The Sneathen Family Site

Be the Hare!

2012-01-12T10:54:00.000-05:00

We spent last night at a middle school swim meet for Zachary. Daniel came to watch, I was timing and Todd was there for a while before he had to run off to a city council meeting. Daniel was very patient at this very long meet. Tonight it is his turn. Yes, tonight he will compete in an honest to God swim meet.

Over Christmas vacation he participated in a Blue and White meet they called it. It was a scrimmage between his team. I was a ridiculous nervous wreck inside but once again put on my happy mom face and worked through it. He was THRILLED. He actually swam in two "races", the 50 free and 100 backstroke. He finished. And when he did I could see his excitement. He finished waaaaaayyyyy behind everyone else. He didn't care. I was very nervous that I would care. You see, I'm a wee bit competitive. OK, maybe more than a wee bit. Maybe a lot competitive. But I impressed my self. Watching him just be a part of the team, finish his races and be excited was ENOUGH for me. Just being real here, I didn't think it would be. I am often told people like my honesty here, so I'm being honest, even if I sound terrible, but I was scared I'd be mortified. Isn't it wonderful when you rise above yourself? I had no idea I had that in me. I just watched him with a smile on my face. It was enough because I know what a huge accomplishment it is for him to even go to practice every day. I know what an accomplishment it is for him to sit through an entire swim meet. I know what an accomplishment it is to get him to swim for 2 hours. It's astounding as a matter of fact.

Since that time there have been away meets, which we are not going to, and a home meet, but with 4 teams. That is just a lot of people. So we actually went to watch that one. He wore his warm up,(see picture above) sat with the team. Told everyone good job, nice race and incorporated himself into the team that way. I sat with him and showed him things during the meet about how things are "done" so he could take it all in, without having to worry about swimming.

Then one day I came into the end of practice to pick him up and they were practicing "starts" and "racing". When I entered the pool it seemed like everyone was standing around, but they were waiting for Daniel to finish his race. People were cheering for him to swim. He was about half way and barely moving. I already knew he didn't really understand the "race" part of it. I have seen him swim hard against his brother. Something about that motivates him to SWIM, he doesn't want his little brother to beat him, so he kicks it into gear. But in this instance, and in the scrimmage, he looked like he was out for a Sunday stroll. It's sort of adorable. But it was clear to me that he had no idea what he was supposed to be doing. Especially when he yelled, "do I have to swim to the wall?" Um yeah...

After that practice I was talking to him about races. How it's different from practice. The only example I could think of about going fast is "the Hare" from Aesop's The Tortoise and the Hare. He loves that story and knows it by heart. He liked the comparison to going super fast like the hare. We have talked about it a few times since then. I was telling my cousin this story yesterday and she said something like, 'you need to find a story with a different moral, like Elmo winning a race, the whole point is that the tortoise wins'. But we were laughing and Beckie was yelling into the phone "BE THE HARE DANIEL" which made me laugh. But I do understand the conflict with the moral, and unfortunately, so does Daniel! So if anyone has any suggestions, please leave a comment. If it is Sesame Street, or some other animated movie, that shows trying your best in a race, that would be the best motivator.

Last night after Zachary's meet, Daniel was riding home with me in the car. He said, "I'm not a tortoise, I am the hare! A tortoise has a very heavy shell that makes him slowwwwww." I was laughing along with him and said "yes it would be hard to swim with that heavy shell!" (again, turtles swim and as far as I know rabbits do not...I need some help here people!) But we were joking and having fun. The last thing he says at night is what he is going to dream about. He said he was going to dream about being the hare.

This morning he came bounding into the kitchen excitedly saying, "I dreamt I was the hare!" But then he looked at me and said "but slow and steady wins the race" with a bit of a question on the end there. I replied that slow and steady wins only the very long races. In a very short race fast fast fast wins, so you have to try to go your fastest. Be the hare. This seemed to satisfy him. He is very excited for tonight. He has proclaimed that he will "Be the hare." What we really want is for him to understand the difference between a race and practice. Which he did not. Todd and I were laughing about all of this on the phone this morning because it really doesn't make any sense at all. It is all conflicting, but Daniel is really enjoying the thought of being the hare. Todd I can't wait to find out what this means to Daniel. Knowing him he'll take it literally and go super fast (for him) and then stop at the end and not finish. Just like the hare. Or he'll try his very best, which is what we want from everyone. Or...who knows?! At the very least, it will be interesting! Seriously, what have I done!?!

Happy New Year; Two Years in the Making

2012-01-05T10:39:00.000-05:00

Happy 2012! I hope this finds your families healthy and happy after the holiday season. We decided to go "low key" this New Years. We stayed home. It's been a busy break with swim practices, so instead of packing up and going somewhere we thought we needed some down time before school started again.

New Years Eve found us hanging out, playing cards and waiting for the ball to drop. Daniel was also waiting, although ready to leap into bed after we counted down. His favorite part is counting backwards from 10 of course. It is oh so very very Sesame Street! At about 11:45 he wandered downstairs, already showered and in his pajamas waiting for "the" moment. He brought his I pad with him while he waited in the family room. Todd and I were playing cards with our friends when we heard the TV go silent. We both turned around to look into the family room and then we saw "it". For those of you who know us, or have read this blog for a long time, you know what "it" is. "It", like Voldemort, is the thing that cannot be named, said, talked about, make a reference to, anything. The Belle Tire commercial was on during The New Years Rockin' Eve "with Dick Clark" hosted by Ryan Seacrest (I don't know why that makes me laugh...Dick Clark, please please retire.)

But for those of you who aren't familiar with our years and years (and years) of dealing with "The Belle Tire guy", here are some old posts for you to read. Here I think that should pull up all of them. I reread a lot of these last night. Realizing that for the past two years we have been actively working on helping Daniel past this fear. Really, it's been his whole life, but the past two years he seems to have matured enough to work harder on it. He is still terrified by the little demon. This seemingly innocuous little guy has really pissed me off for a long time. Only because he paralyzes my child and prevents us from going to a lot of places for fear that he will suddenly appear on a screen somewhere. I have written about "Sensory Perceptual Issues in Autism and Aspergers". But as a reminder, it explains that "perceptual thinkers can experience thought as a reality. It means that when they think about something, they relive it visually, auditorially, etc and emotionally." (ONeill 1999). If you have ever seen Daniel react to this guy you'd know he was reliving a nightmare over and over again.

One of my followers became someone who worked for Belle Tire, because I wrote about them so much, I guess they had to know who this blogger was who kept talking about them. They feel bad. They've even written to me, which is nice, but also kind of funny. But what can they do? I only wish they could do something.

So back to NYE. Silence. Todd and I looked at each other, with that non verbal communication that only 20+ years of marriage can give you. Todd jumped up and went into the room (we can see the TV from where we were, but not Daniel). Daniel was looking at his I pad, with kind of a scrunched up look on his face, looking off to the side. Kind of like when you see something really disgusting and don't quite want to look at it... Then when it was over, it was over although he was a little upset. He muted it and looked away. That's what he did. What he DIDN'T DO was: yell, cover his ears, run from the room. None of it. None of the typical for him fight or flight, over the top panic. He simply picked up the remote and hit that powerful little button "mute", averted his eyes and waited for it to be over. For two years, when we go into restaurants with TVs (that are muted) we have told him "it's safe, it's on mute", he won't hear "it's" voice and he can look away when it's done. For over two years. It has allowed us to slowly go to more places. He gets a little anxious, but he's been doing it with some underlying panic. Then on NYE, this happened. The couple who were with us, both know very well, about his problems with this. We all looked at each other in astonishment. I'm so glad they knew how BIG, HUGE, ENORMOUS, this was for him and were able to celebrate that with us. We didn't have a lot of time to do that, because it was time for the countdown. We had poppers with confetti (yup, loud, but we warned him, and he was fine with it and happy to pull one himself). We counted down, we kissed and hugged and welcomed 2012 together. With maybe just a little more enthusiasm that we had planned on because Daniel made a huge leap forward that night. I think confetti and celebration were a perfect way to follow up this growth. That is why we are always working on things. It took over two years, and we saw a change right before our eyes. I'm hoping this is a sign of things to come. Happy New Year from the Sneathens!

Just Keep Swimming, swimming, swimming.....

2011-12-15T11:09:00.000-05:00

I have been asked, a lot, about how swimming is going for Daniel, so it is time for an update. How's this? He LOVES it. What does he love? I'm not totally sure. He cannot put something like that into words really. At night, filling out his feeling journal (which is really a way to help him figure out his anger and emotional breakdowns, but we have to be positive so we also ask about what made him happy) he says "swimming with ________ and ________." So in his way, he is happy to be swimming in a lane with a couple of kids he's known for a really long time. That's it. Pretty simple. But from a parent's perspective this is what I think he loves, but doesn't know how to say:

1. He loves being a part of a team. For the first time ever, at age 15. He is a part of something at HIS high school. He has eluded to this. "Swimming at my school".

2. He loves the exercise. When I pick him up he is in a state of calm. All of the physical exercise seems to center him and calm him. It seems to work out the angst of a 15 year old with tons of hormones and autism on top of it. He could never put his finger on that, but I can see it.

3. It improves his sleep. There is nothing like good 'ol physical exhaustion to help you sleep! As a mom who likes to sleep more than, well, anything. (Daniel once compared me to a cat in a school project saying "my mom is like a cat, she likes to nap" nice!) and having a kid with autism who didn't sleep for 9 years, the fact that he slept until 11:15 on Sunday makes me dance with joy.

4. He gets to be part of a team, but work independently at his own pace. How much more perfect can that be for a person with autism? It couldn't be, is my answer. Swimming actually puts the I in TEAM!

Just to be clear here. He is NOT participating in the same way as everyone else. The REST of the team is there at 6:15 am or 6:45 am depending on the day of the week. They work until 7:30 am. Then go back after school from 3 to 5:30. Daniel does not do this. From the book of "learn from your own parenting mistakes" we are easing him into this swim team thing. We are taking cues from Daniel and (gently) nudging him. HE is deciding what he can handle. He isn't telling us this with words. I constantly get parents of special needs saying to me "my child can't talk" in a way that says they are annoyed with me that my child can. When I say things like he "tells" us, he tells us with his moods, with how he reacts to something, whether positively or negatively. You just KNOW your kid. You have to step back and read them.
We are lucky that our coaches are open to any and all of this. They just want him to keep swimming. To love swimming, and to be in the pool as much as he can handle. In fact, the coaches excitement has almost thrown me off course a few times. But I have had the sense to listen to my gut. Again.

So in reference to above where I said "learn from my mistakes". Here was our mistake. When Daniel was 6 he started his MSU swimming with KIN (Kinesiology dept). Each spring they go to the Special Olympics. After two semesters Daniel did the Special Olympics swim locally. He still couldn't swim independently, but did one event that he had a flotation devise on and swam. One "noodle swim" with two much older, larger individuals, and something else... I can't remember. He won a first place medal in every thing he did. Sounds good right? Well, he could care less about those medals even though they hang in his room. But something else happened that day. I have no idea what it is, but SOMETHING happened. We waited, a lot. He seemed to do fairly well (as well as could be expected). I believe at the time he had a Game Boy or DS or something and we had that for in between times. But from that point in time forward, he never went back to Special Olympics. Ever. He is now 15. When he hears "Special Olympics" he is like "no way not gonna do it" and will not budge and usually escalates and whimpers and yells. I have no idea why. But when he refuses, you are not going to get him to change his mind. EVER. Whatever happened that day, or whatever he hated, he has never been able to communicate to us, and we can't get him to change his mind.

So we went into this swim team thing with a lot of apprehension. I know that if we push it just a little too far, we might ruin the whole thing. He has 4 years to participate with this team. I'll be damned if I'm going to screw it up by getting a bit too excited and pushing it. I know some people probably think we are taking it too slow. I.DON'T.CARE.WHAT.THEY.THINK. I refuse to mess this up. This is his only chance to participate is something like this. So here is what we are doing to (in the words of Tim Gunn), make it work.

1. Daniel is not going to morning practices, at all. I don't even think he realizes they exist.

2. He is going after school to swim. For a few days I went into school at the end of the day, brought him food (we must feed the beast) and brought him his Buspar (anti anxiety medication). Then walked him down to the pool. I stayed for practice, 3 times. For Daniel, I say "three times is a charm". If he does it three times in a row without incident, you are probably good. You see, the first time may be a fluke. The second he knows what's going to happen and something new might come up. The third he is fairly comfortable and if he is going to revolt, it will be on the third try. Also, for all of you who have started and failed exercise programs over and over (I speak from experience) the first time you are super gung ho and sure you will soon be running a marathon. By the third time you are exhausted and wondering why you decided to do this. So if he got through 3, I was pretty sure, he'd be in.

3. After the third time of me going to school and staying until 4:30 (cutting it short. You could see by 4:15 he couldn't pick his arms up out of the water he was so tired so we'd push him until 4:30 to build endurance but not so far that he'd vow never to return), I arranged to have the social worker at the high school walk him down to the locker room and get him settled at practice. The social worker (lucky us!) happens to be a man and could go in the locker room and continue to teach Daniel how to organize himself. This was taking a surprisingly long amount of time. He was not finding the locker room independently, nor was he able to navigate his padlock, which he usually has no trouble with. I'm not sure why this was the case, but he needed time. I continued to email the social worker and tell him the schedule of the days for swimming and he helped all but one day, and he arranged on his own to have a male para pro take over that day. I didn't even have to ask! It was awesome.

4. We decided to have Daniel only compete in home meets. This is where we have gone back and forth. The first two meets had like 12 or more schools involved and sounded like a nightmare for the sensory system. Loud and chaotic. Those were easy decisions to skip. But this is Daniel. We know him. When he doesn't know where he's going he gets very anxious and wants to know "how long will it take to get there?" and escalates. Todd and I decided to have him only go to the meets where he is used to his surroundings. Familiar surroundings are very important to him. We keep telling ourselves "he has four years, he has four years, don't push it". So he hasn't gone to a meet. Yet.

5. When others were bringing him down to practice I was coming to get him at 4:30. Last Friday I went in at 4:30 and looked at Daniel and he was a new person. I could tell he wasn't exhausted. He had gotten over that hump. The coach glanced up at me and smiled and simply said, "I don't know if you are getting him out today" and I knew we had done it. Daniel waved at me and instead of saying "am I done, can I get out?" he touched the wall and made his turn. And just kept swimming. I was proud and relieved.

6. The coach seems to know how to push me just enough not to make me run away screaming. Very important. I see when I'm being pushed. But I like his style. He looked at Daniel and me that day and said "come in tomorrow, 9:00 am for Saturday practice" and basically walked away. I'm thinking 9:00 am on a SATURDAY? Daniel looked at me and said "do I have to set my alarm (he's not a fan) and I said, "no I'll let you sleep as long as possible then get you up. And he got up. Willingly. And went to Saturday practice. The coach says it nicely. He seems to know, just how far to push it. He was also thinking and planning how to work Daniel into the away meets. He made me think about it, and I finally said "NO" and held my ground. I told him his history with never doing things again, and he agreed, we don't want that to happen. He listened. Isn't that awesome?

7. The coaches believe in 100% participation. When we agreed on the first meet he said they'd put Daniel in a 50 free style and that would be it. I agreed that was plenty. Enough to get his feet wet (ahemmm, sorry) and enough to make him feel part of the team. Sounds good.

It has been a HELLUVA lot of work. But it is SO worth it. I can see how this is positively affecting him. He seems calmer, happier and frankly, he is already slimming down. Yesterday I went in a bit early because they were taking team pictures. I knew that would be crazy so I went in to facilitate. I stood back, watching the kids who have taken Daniel under their wing. Who were helping guide him through the confusion. Daniel was irritated because he didn't want to put on the team shirt and warm up pants and get them wet. I finally went over and whispered that I would put them in the dryer when we were done. That seemed to do it. He went over and got into the picture. Kneeling in his row. Smiling for the camera. Lined up with his teammates wearing his new shirt with all the swimmers listed on the back. His name included. He was patient, he waited for the photographer. He waited for everyone to get situated. He was doing what everyone else on his team was doing. It made me very happy. It makes everything worth while. How does the saying go? The harder the work the greater the reward? I think that just about sums up raising a child with special needs.

A Day in the Life

2011-12-09T11:35:00.000-05:00

December 7, 2011, late afternoon. I am leaving Meijer, a huge store in this part of the United States. It is based in Grand Rapids, MI not far from here, and it was the blueprint Sam Walton used to design his mammoth Walmart stores. I lucked out and one of my favorite cashiers walked by and gave me the signal she was opening. I quickly got out of line and into hers. It truly is the little things that are encouraging. Little did I know this was the high point of my day.

I was making something new for dinner. I love the promise of a new recipe. It is simple recipe, but pretty time consuming. I was going to start at 4:00 to have it ready by 5:45 when my 11 year old came in the door and the first thing I heard was a choking groan in the back of his throat. "Not good" I thought. I tried to be upbeat, but it was too late. As soon as he saw me he dissolved into tears. It wasn't really anything, he was feeling sad, and tired and needed to let go to his mom. I'll take it while I still get it. These moments of closeness with my boy will be disappearing soon enough. It started my dinner late, but I dove in while he was working on his homework.

Meanwhile Todd came home. Everyone was saying how good it smelled in the house. Things were looking good. Todd then said, "but I'm meeting my friend at 5:30 before the MSU basketball game." Then quickly added, "but I can drive Zach to swimming on the way" to try to make up for the fact that my work thus far was for naught. So I decided I could finish most of it, put it together the next day and stick it in the oven. That is the last step anyway. It should work.

Daniel was in the basement, in his glory that he didn't have anything after school for the first day in weeks. I let him be on the computer for some rest and relaxation. Zach and Todd left. I was packing up the dinner when the phone rang. Zach was at the high school pool and it was dark and locked. Todd had dropped him at the curb, and when he went in, that's what he found. I knew he was in a rocky state so we talked for a minute to relax him. He said two other kids were there with him (so I didn't totally flake on a cancelled practice I thought to myself) I told him it made sense it was locked up, because the high schoolers who usually are practicing before them were at a meet. I knew because we chose not to send Daniel. We are easing him into the schedule for his first year of the swim team. Since he had two other kids with him, I asked him to wait for 5 more minutes and then call me if a coach hadn't showed up. He did and called me back with relief that his coach had arrived. Crisis and an ill timed trip to the high school, averted.

I started packing dinner only to realize that I now had a filthy kitchen, no dinner and I was starving. I threw Daniel's together which I have the basics on standby because he doesn't usually eat the same main dish as us, unless it is hamburgers or tacos or bratwurst sausages. (?) I make batches of his stuff and serve it with the same sides as we have. So I heated a hamburger, gave him melon, and carrots and fed him. I decided to order a pizza (which I could live on twice a day every day if someone would let me) but mid order I realized my wallet wasn't in my purse. I couldn't give him the VISA number without it. (I only have it half memorized). So I hung up in search of my wallet. Only to remember that the last time I saw it I was at the stove watching my Labradoodle run by with it in his mouth with my husband in hot pursuit.   Our labradoodle, Oscar, has a thing about stealing things. He never eats them, he just finds great pleasure in snatching things and running through the house with us yelling "drop it" and "no" and he runs around tables and over the top of furniture to escape us. It's super fun....for him. Especially when you are in the middle of something. At Thanksgiving, unbeknownst to us, he had taken my brother in laws wallet. We found him in the living room with it in front of him on the floor pulling bills out of it, one by one. My wallet didn't measure up for the fun factor as it only has that pesky plastic in it.

After texting my husband demanding to know where my wallet ended up, I realized I was beyond hungry and getting really testy. He told me 4 or 5 places he was sure it was and said he had "been no where else in the house". This was obviously wrong since it wasn't in any of those places, but since he was having a drink with his buddy before the game, he wasn't feeling my pain and I don't blame him. I finally located the wallet (oddly in a room Todd had claimed to have never been in) and called back the pizza guy for him to say 40 minutes. Which put me right about the time I was supposed to be picking up Zachary. Sigh. I decided to risk it. It came in time for me to scarf down some pieces, yell to Daniel I had to run to the high school "quickly" and be back. Another problem barely averted.

I pulled into the high school to see nothing but cars as far as the eye could see. They were illegally parked, added on to ends of rows, on the grass. The quick part of this scenario evaporated. Not good. After circling 3 or 4 times I decided the fire lane was my best bet. I had to go in to get him, since we hadn't arranged other wise and that has been the routine. I saw my friend who lives across the street pull in front of me (we had pulled out of our driveways at the same time.) We talked for two minutes (the best part of my evening). I abandoned my car in the fire lane, hoping that it would still be there ticket free when I returned but feeling optimistic that 10 other cars followed my lead in the fire lane.   I made it to the pool and it was empty. I knew he must be in the locker room and chose to wait outside the door. I amused myself watching the high school girls basketball be silly in the hallway, ignoring the anxious middle age woman hanging outside the boys locker room (me). I have spent an unimaginable amount of time outside of a boy's locker room door, waiting for my children to appear. Daniel takes his sweet time when I'm waiting. Savoring the fact that I am helpless and unable to charge in and demand he speed up. It's an annoying and helpless feeling. Zachary finally emerged, I found my car where I left it, again feeling like I barely got by with another one this night.

I then realized Zachary had no food. I looked at my tired boy and said "How about some McDonald's?" He sighed with relief and said "that sounds perfect". Off to the drive through, feeling guilty for once again getting fast food and happy that I felt like I just made Zachary's night. We went home for homework. Zach was working on his (again) and went through Daniel's folder only to see Daniel had a research assignment he had "started at school" with no mention of what he had already done. Just a list of websites, but no mention of which he had visited. When I ask Daniel questions about this sort of thing he becomes angry, he thinks I should know all of this (but really I SHOULD but for some reason the school refuses to communicate it to me). He obviously doesn't want to repeat what he's already done, or he can't remember, or he doesn't want to remember, or he feels I should know or he simply can't communicate to me and pull the words together (most likely). Doesn't matter, it always ends up with Daniel getting mad and having a tantrum. He's 6'1" 215 pounds by the way. Then I'm mad at the school for not just telling me the damn information. So I wrote a note to the school saying if they don't tell me, I will just not even attempt it at home anymore. Done. (The response I received the next day was basically "Daniel knows what he did". Sigh. They really think I'm making this up? Do I want to cause more tension and anxiety? I don't think so. Don't need it, obviously.)

Next, Daniel emerged from the basement and calmly said, "the lens fell out of my glasses". (of COURSE it did). I asked what he did with it and he replied in a off handed, what else would I have done way, "I just put it back in." Wait a minute. What? Something like his glasses falling apart will normally cause him to dissolve into a tantrum demanding that they be fixed immediately at 8:00 pm on a Wednesday night. I asked him for his glasses and he removed them and went to shower. I tightened everything as much as I could, with the set of tiny screwdrivers we have for such things. I of course had a wrong size but made due. There was a glaringly empty space where it is most likely that the correct sized screwdriver should be but was not.   I made due. I was still amazed at the calmness Daniel exhibited while delivering the news of broken glasses, but just counted my blessings while I looked up what time the Optometrist opened the next morning, planning on bringing him in before school, or with him missing as little school as possible (he doesn't like to miss ANY, it's his routine) I wanted to make sure they wouldn't fall apart at school. THAT would be a disaster.

Daniel emerged from the shower checked his glasses, satisfied with my workmanship. He went to take his 2 5 mg Buspar that is his evening dosage of his anti-anxiety meds. He uses a days of the week container so he has 4 per day. 1 in the morning, 1 after school and two at night. He says, "Wednesday is empty. I'll just get two more." Wait a minute. "Why is Wednesday empty?" I responded. "I don't know." (Teenager) He answers while pulling out the pill bottle to 'get two more'. I told him he was NOT taking two more and asked if he took all three that were in there after school. He said "no". I then asked, "well what happened to them, did you drop them? throw them away?" "No, I TOOK THEM BY MISTAKE".  (he hates making mistakes) Let me get this straight,he took 15 mg after school instead of 5 mg. Highly unusual since he is so methodical about every thing. I worried for a moment that he took way too much (running a quick ER scenario through my head) then I remembered the Dr. had told me 30 mg / day would still be an appropriate dose for him. I counted it up and realized he had taken 20 mg so far that day and gave him only one for the evening. He wasn't happy because in his mind it wasn't "right:". But he did accept it.

When Todd got home from the game and I was very happily alone on the couch, I was relaying this evening to my husband he said "No wonder he was OK with his glasses falling apart." What would normally send him into a spiral was "oh well I'll just pop it back in" because he had taken so much anti anxiety medication!. I hadn't even had the time to put this together or I was too tired to do so. We dissolved into laughter on the couch, realizing that his mistake of taking too much medication showed us that he just might need a bit more, and that his mistake might have been a very good thing. Come to think of it. After reflecting on this day in the life of....maybe I could use a little of that medicine too. I think I need it as much as he does, or maybe not, if I can end this day laughing with my husband on the couch about it.

One Small Voice

2011-12-03T15:49:00.000-05:00

Last night Daniel went to a winter dance. It was given by the teachers who run the summer camp he went to this past year. I wasn't blogging then, so I don't think it's ever come up here, but it was an overall good experience for him. At the very least it got him out of the house 3 days a week! All of the kids from the camp were invited and it was held at the high school one district over from us, where the camp is held.

There was a DJ and snacks and a chance to see some of the kids who attend different schools. Daniel is always up for a dance and even though it's been a very long week here having swim practice every day, we decided to go.

The invitation said "dress up" and at the last minute I wondered if Daniel would wear a tie. He has never worn a tie, but he always complements Todd on HIS ties and he likes to play with Todd's ties and flip them around, so hmmmmm. I took a shot and asked him if he would like to borrow a shirt and tie from his dad. I told him he could wear his black jeans and I thought he'd look pretty cool. Daniel agreed very quickly. I was only hoping the shirt would actually FIT Daniel, and I don't mean that his dad's shirt would be too big. The opposite, I thought it may be too small....

We went up to our closet and I immediately honed in on a purple shirt and a silver grey tie that has some purple in it. I thought it would look pretty sharp with the black pants and Daniel agreed. Once he started putting on the shirt I realized it would be too small. To go along with the "dressy but cool and relaxed vibe" he had going on I rolled up the sleeves (to cover the fact that they were too short) and left the top button undone (because the neck was too small). I attempted the tie, which I did an OK job with, but not good enough. Todd came in the door from his meeting and fixed my inexperienced tie tying right away. The result was quite good I thought. Here's my handsome kid.

The dance was 7 to 9 pm and I decided to drop Daniel off. It was going to be the first time he was just dropped off at a dance. I have always volunteered or stayed in some capacity. The teachers gave the OK on parents dropping off. Unfortunately, I didn't prepare Daniel for this and on the way there I said I was going to drop him off and come back. His response was an anxious, "I will MISS YOU". His way of saying "there is no way you are leaving me there lady!" I was a bit dismayed. I hadn't been planning on staying. I haven't been feeling well this week and have been plagued with headaches. Two hours of loud music wasn't sounding like a great idea. He seemed anxious after it came up and I knew I had to stay. After thinking about it, I realized he had never been to this dance before and I understood his hesitancy. I was kicking myself for not being more prepared. I texted my husband and said I had to stay, upon Daniel's request. I was starting to text him "have wine ready" to him and he texted me first "I'll have the wine ready". God I love that man.

Daniel hit the floor immediately. I love to watch these kids dancing. They are the epitome of "dance like nobody's watching". There is no self consciousness at all, they just feel the music and move how the want to. It makes me happy!

I could see Daniel playing with his tie and flipping it around like I see him do to Todd's. He hates to be video taped, but I used my phone to sort of act like I was taking a picture (dirty trick, I know, don't judge) and I called him over to me. Here is what I got:

Now if you look at the beginning when he walks up to me and starts adjusting his tie at the knot. I thought that was so cute and such a "I look dapper" move. I posted it to Facebook and had Todd go look at it from home. Todd texts this to me: "Baby Bear, One Small Voice".

I didn't get it at first. Then when we got home I asked Daniel where that "tie move" was from and he said "Baby Bear, One Small Voice" "Elmopalooza". I looked it up. Here it is. At 38 seconds in, watch Baby Bear:

How can practically everything he says or does be a snippet of something he has seen or heard? It amazes me. It's like everything is on one giant editing tape and he immediately sifts through the information in his brain, cuts, splices and then spews it out. In seconds. And it is completely appropriate for the situation. If you weren't home watching all of these movies with him over and over, you would never know that it was "from" something. But it is. Almost always. It's baffling. Yet I'm thankful for it. Yup, I said it, I'm thankful for his echolia. Without it, he may not be able to communicate at all. It gives him his voice. I'm thankful my child has a voice, a way to express himself, even if it is filtered through Walt Disney. Many kids on the autism spectrum don't have that voice. Their parents don't get to hear their thoughts and feelings. While Daniel struggles with communication daily and gets frustrated at times with his inability to tell you what's wrong, I know we are still lucky. So for today I am feeling thankful for that voice and to Baby Bear for giving me that small moment in time.

The Muppets

2011-11-27T11:56:00.000-05:00

This weekend a much anticipated movie was released. The Muppets. Ever since we saw the ads for this movie, we have all been really excited to go see it. Unlike many kids, my children have watched a lot of the old Muppet Movies. The original The Muppet Movie, Muppet Treasure Island, and Muppets from Space have actually been not only rented or checked out from the library for years, but we actually own some of them. They have been a staple in our household. In the fall of 2006 Kermit was the Grand Master of Michigan State University's Homecoming parade. Here is a small clip from You Tube. You can seriously find anything on You tube:

Daniel still talks about that. It was the most star struck I have ever seen him, and honestly, I was a bit thrilled to see the little green guy perched on the back of that convertible waving to the crowd. The theme was Bein' Green. Get it. Green like a frog, green as in recycling etc. It was awesome. When we were walking to our car after the parade we saw a limo parked on the street. My husband joked that Grover was driving it and waiting for Kermit. There is a scene in Elmopalooza that Grover drives a limo, so it was a natural connection, but to this day if we drive past a limo Daniel thinks Grover is driving and Kermit the Frog is in there. Just yesterday we passed a limo on the expressway and Daniel craned his neck to see if Grover was driving. He wasn't, by the way. So you see. The Muppets and really ingrained into our lives.

Thanksgiving night Zachary was on the laptop at Grandma's house searching for movie times. I was honestly not really looking forward to it. Another Muppet Movie, yeah yeah....I have spent the past 15 years watching these same movies over and over again. Our kids with autism often stay in these stages, forever. Unlike other families where they may have a 6 month Teletubbies obsession, with us, it. never. ends. If you would like to take a quick look at A Diary of a Mom's blog where she talks about this regarding Halloween this year, go ahead. I'll wait. See, it's not just me. Our kids don't have the social filter to care that Teletubbies is totally inappropriate. They just know what they love. So this is why I know these movies inside and out. When Daniel incorporates a movie line into a conversation, flawlessly I might add, I usually know where it came from. If there was a kids movie version of Who Wants to Be a Millionaire, I would be ALL over that.

So the afternoon on Black Friday, which I never participate in, I much prefer to sleep and lay around like a slug all day digesting my turkey with all of the trimmings, we headed out at about 2:00 to the 2:30 movie. Except when we got there it wasn't a 2:30 movie, it was a 3:15 movie. Zach was looking at the wrong theater so we were one hour early. There was NO WAY in the world we could leave that theater. Daniel would never leave without seeing that movie. The explanation that we would come back, wouldn't fly. He would melt down. All 6'1" of him would be screaming and yelling and causing a huge scene. So we stayed. Todd got a bunch of tokens for the game room where they luckily had a Simpson's pinball machine (Daniel LOVES pinball) and we settled in for the wait. I have never seen him so patient in my life. Proof that this was a huge deal for him that he was willing to do just about anything to make it happen.

We finally settled into the theater. Daniel with his kids size popcorn and Sprite. Standard fare for him. After a new Pixar short about Buzz Lightyear that was rather enjoyable and about 20 minutes of previews after an hour of waiting, we were in business. As the movie began I was at first dismayed that the story is exactly the same as The Country Bears (2002). Not that anyone else in the world would realize this but us. Who else has seen that movie? Anyone? I have, approximately 15 times. The basic outline is an evil man is going to take over Muppet Studios, the Muppets have to raise money to save it. They are spread out all over the country so they go on a journey to get them back together for one last show. EXACTLY like The Country Bears. That annoyance quickly dissipated and I found myself sitting there, literally grinning from ear to ear. I was excited, happy and laughing out loud. It was awesome. During The Rainbow Connection Daniel and I were singing together he was playing the banjo (air guitar style) and we were in heaven. There were lots of wonderful original songs like "Am I a Man or am I a Muppet" that were hilarious. There were wonderful guest appearances. It was just super enjoyable. I love watching Daniel when he is watching something he loves. The joy is contagious. At one point in the movie a woman punches someone and Daniel yelled out "WHAT A WOMAN" which is a line from "The Hunchback of Notre Dame". It was funny.

If you can't tell, we all enjoyed it. A lot. The man in front of me was probably 45 and laughed LOUDLY and often to the point that it made me giggle with how much he was enjoying himself. When the lights came up Daniel said, "In the scene in Walter's bedroom (which was filled with Muppet's paraphernalia) there was a picture from my July calendar of Kermit the frog! I just stared at him in disbelief. In explanation; a.) Daniel has a monthly Kermit the Frog calendar hanging on the wall of his room and b.) within that very quick scene with hundreds of Muppet things in Walter's bedroom, he picked out the picture from his calendar and knew that it was the "July" picture. His mind is the most fascinating thing. I don't understand how he could have picked that out, but he did. No one can say our kids don't know what is going on. I think bigger problem is they know everything that's going on and they can't filter it out. No wonder they are overwhelmed so often.

I'm just happy we had a successful day at the movies and I am SURE we will be seeing it again. I am glad I liked it too, because I am 100% sure we will be owning this on Blu Ray/DVD some day and I'll be watching it hundreds of times in the future.

Oh and p.s. My 11 year old started his own blog. My little writer decided to do kid's movie reviews. His writing is much better than mine, so please don't hold that against me if you decide to check it out. I am very proud of him. I think it's a great idea. Adults reviewing kids movies, doesn't always add up. Moviereviewskidsedition.blogspot.com

50/50

2011-11-22T14:34:00.002-05:00

With the words, "make that call" I was thrust toward my next journey. Daniel's three words were about the high school swim team. I had explained to him that the high school has a swim team, the same way they have a football team,(this would have never occured to him) and I wondered if he was interested in becoming a part of it and if I should call the coach and talk to him. I was expecting a stressed "I DON'T KNOW". Which is usually what he says in these situations. He becomes agitated because he doesn't know what to expect. It is so uncertain, he doesn't know what to say. Not this time. He said, "make that call". Okey dokey. I guess we are doing this.

Today is the first day of practice. For Daniel at least. Yesterday was the "official" first day. We didn't make it. I was still waiting for the forms from our pediatrician saying Daniel has had a physical and is fit to swim. I got those yesterday afternoon. Now we have what we need. So today's the day. I thought I would write this blog before I actually know what happens. I'm not sure if that is a good idea, because then I am letting you in on my secret. That I am a total obsessive compulsive wreck planning for these things.  Is that what helps it work? That I think of everything (or almost everything) and perseverate until it happens? Maybe. Maybe it would all work out anyway and I just cause myself a ridiculous amount of stress and I should just trust. Nah. Not going to happen any time soon.

After I was requested to "make that call". I sent an email to the swim coach. Well several emails because our schools website, in my opinion, kinda sucks. I looked him up under athletic coaches and emailed him. I got something back immediately saying it was an incorrect email. Of course. Then I went on a hunt and finally tracked it down.  I didn't hear anything. I called the elementary school where he works as a PE teacher. Several days later, I heard back.  He did email me back, I didn't receive it. This seems to be happening with some frequency from the school. I'm not sure if it's them or if it's me, but it is super annoying. I had a great conversation with the coach. I had heard he is a great guy and my conversation would lead me to believe that is true.  He was totally open to whatever worked for DANIEL. What a relief.

I also talked to a teacher about where Daniel could eat a snack after school but before practice. He is like a hungry grizzly bear after school and there is NO way he could do this without eating. I got that part arranged.

When I found out practice was 2 hours I thought. Wow. Maybe not.  The coach said, Daniel can stay as long as he can handle it. When I said that he is committed to his MSU swimming until December 8, he said, that's fine. He can come when he can. When I asked about meets, he said he would absolutely be able to compete. Everyone gets to. This sounds amazing! How wonderful! He said I should stop by after school some day and get the needed forms. We missed the initial meeting because Daniel was sick.

So, not once but twice I went walked into the high school at the end of the day. Walking against the flow of teenagers streaming through the doors. The PACKS of kids, who all look amazingly old to me. Each time I walk in there I am so thankful that Daniel is over 6' tall. I feel like he would get swallowed up into the crowds and feel trapped and panic. Instead he at least is big enough to look over the top of most of them, and while he's super solid and bulky I can't help but wonder what he feels like getting bumped and jostled in those crowds.  For a person who likes to be touched on HIS terms only, it must be a nightmare.

These two trips left me formless.  The head coach wasn't there when I was. We had different ideas of what "after school" meant. I did find the assistant coach and talked to him, with Daniel present and we got to check out the pool, which was very good. It is a newish facility and pretty impressive. Daniel loves a pool as we know and this one definitely measured up. So something good happened. One coach met Daniel, he got to see the surroundings, which he always needs. But I still didn't have what I needed. What I also saw was the hallway/locker room area, after school. Full of "jocks", kids screwing around, hanging out and generally doing all the things that freak Daniel out. That is unpredictable of the highest order.  What other people see, I do not. My mind rushes through all of the things that could set Daniel off. It ticks off all of the problems we will have to over come.  I don't see anything as I used to, and when I'm planning something like this, to make Daniel a part of something, he hasn't been before, I see the problems. I see the problems first so I can (try to) find the solutions and clear another path open for Daniel. I firmly believe our kids need to be exposed to as much as they can tolerate. That's how they learn. With Daniel in high school, I am feeling the opportunities might be peaking. We need to seize them.

I talked to the coach about staying for practice. At least for a while, until he is settled in. I can't imagine just leaving him. I know I probably should, but there are so many problems that could arise. He needs to get settled. Know the routine. If he is having a hard time I can assist the coaches, but otherwise I plan to stay far out of the way in the stands. I also need to decide when he is ready to leave. He is used to swimming for an hour. But right now, I don't know what the plan is. I fear if they try to instruct him too much, he'll get upset. I have no idea what to expect. If things aren't going as Daniel expects he'll get upset and not be able to communicate well. I don't know what he's thinking because he can't really express that to me. It's a guessing game and a waiting game. It's us jumping in and me holding my breath and hoping. The coach was hesitant about me staying but agreed as long as I stayed out of the way.

However I was still formless after these two trips to the school. I emailed the Athletic Director thinking he might be easier to get a hold of. He was. I got the quick answer to go the Michigan High School Athletic Association website and print them off. Really wish I had either thought of that myself or someone else had mentioned that to me....I always feel self conscious asking so many questions. On one hand, I have to in order to prepare Daniel as much as possible, but I also don't want to come off as a crazy person. I could have asked them approximately 100 other questions and didn't. Honestly, I still don't know if it would have made me feel better, or feel more anxious. Like I said, it's a balance that I am constantly trying to find.

The truth is, what I'm really afraid of is the locker room. I can't figure this one out. Zachary always comes out of the locker room rolling his eyes, horrified at Daniel in the locker room. Zachary is prudish, Daniel is......NOT. He just walks around naked, singing and "air drying". This never fails to make Zachary crazy and scurrying from the locker room in a frenzy just to get away. Daniel doesn't care. I, never having been in a men's locker room, am not sure what the protocol is. I have asked my husband, since he was in a high school locker room for 4 years of football. I haven't gotten an answer. He's probably afraid he'll send me into a state of panic if he tells me the truth and really, come to think of it, it may be better if I don't know. High school boys locker room. Really, that sends a shiver down my spine.

Last night I made a list of locker room rules at the high school. Yes, this is an actual list that I typed onto my computer and saved under "locker room rules":

1. You will not take a shower at the high school unless mom or dad says it is OK that day. You can either take a shower when you get home or in the evening before bed when you usually do.
2. You will quickly dry off with a towel and get dressed. no sitting on the bench naked to air dry. You will keep the towel around your waist if walking around naked.
3. There is no singing in the high school locker room. You can do it at home. (somehow I don't think singing "I love trash" ala Oscar the Grouch will be a good thing.
4. The team practice goes until 5:30. Daniel is probably going to leave earlier than that. In the beginning Daniel will only stay for about 1 hour of swimming.
5. Daniel will not yell or bite. You can take a break if needed or talk to the coach.
6. In the beginning either mom or dad will be there in the bleachers in case you need help. Eventually you can stay with your coaches and the other kids.

I have also asked the Teacher Consultant in charge of the friends (ELFS) group at school to see if there are kids who can be his" buddy" so to speak during practice. Haven't heard anything back. Asked for that weeks ago. The wheels of information seem to turn very very slowly. It is frustrating.

Today, Todd will come at the end to facilitate the locker room process. I simply don't have the necessary parts to get into that locker room. So today is the day. Daniel is supposed to practice with the boys swim team. I don't know what to expect.. I have no idea what will happen. I don't feel prepared. I feel neither confident nor panicked. I've done this enough to know that our weeks of preparation is as much as we can do. I am, however, hopeful. This would be a great thing for him. He loves the water so. It's his only chance to be a part of a high school sports team. It's great exercise for him. It's all good. Right? Please tell me it's all good. I need some positive reinforcement.

So all of this leading up to today. I still feel like I know nothing. My stomach is in knots. This might be the first and last day of his swimming career at the high school, it could also be the best thing that ever happened to him. I think it's about 50/50. I am second guessing myself. Maybe we should wait a year, but it's too late. Daniel expects it and I need to follow through now. For better or for worse. Wish me luck.

Autism and Church Part II

2011-11-14T09:20:00.000-05:00

Saturday night we told the boys we'd be attending the 10:30 service the next day. Everyone was on board. We were careful to explain to Daniel that he would not be hanging out in the Youth Parlor, we'd be in the sanctuary. On these first trips anywhere you have to be so very careful. Whatever you do, he will want to do each and every time. If we had allowed him to play pinball, by gosh he'd be doing that every single time. It is nearly impossible to change. That is one reason why we waited until this day to go. They have had some other special weeks of Youth Sunday etc. but it hasn't been the "standard" service. We wanted his first church experience to be what it would look like MOST of the time.

All went well most of the morning. When we got to the church and the parking lot was full the anxiety set in for him. I could see him start to stress. He got rigid and irritated. Todd dropped us off and set off in search of a parking spot. This also caused him great stress. But we have determined through other experiences it is better than Daniel driving around and looking. We waited on a bench outside while Daniel perseverated about when dad would come and where he was. I was on high alert because of Daniel's stress level. He just didn't know what was coming and frankly, neither did I. We sat on the bench on the mild November day while people continued to walk into the church. With every opening of the door he got more stressed waiting for Todd and listening to the very loud screech of the door. Daniel commented that it "definitely needed oil". I agreed but was continuing to put on my happy face while Zachary paced off to the side. I could see how upset Zach was getting. I'm sure he was thinking what a terrible idea this was and he was preparing himself for embarrassment and disaster. I have to say. So was I.

When we finally saw Todd striding across the parking lot toward us I think we all let out the breath we were holding. We looked at where Zachary would be going for Sunday school and sent him off. That was one thing I was relieved about. If Daniel did scream and break down, Zachary would be far away in the Youth Parlor for Sunday School and wouldn't have to witness it.

We entered the sanctuary and positioned ourselves near the back at the end. Ready for a quick exit to the Friendship Hall if necessary. We were given programs which we started to look thorough. The program!!! What a wonderful thing! For those of you with kids on the autism spectrum the program is essentially a visual schedule!!! It showed all of the things that would happen, in order. Something for us to point out where we are in the schedule thus helping him determine what is left to get through. This was good. This was very good.

Then a woman took a seat in front of us with an adorable little girl. Probably 1 1/2 or 2 years old. Todd and I looked at each other, with Daniel in the middle of us. We both immediately knew what the other was thinking. "This will never work". He would be watching that little girl wiggle and want to leave and the mom would be doing whatever would need to be done to keep her there, which is fine, but that won't work for Daniel to see the whole time. He would be very irritated and would only focus on her. The next thing we simultaneously thought was "how do we get him to move?" Because once he has a spot. He doesn't move without a fight. I said, "Hey let's go say hi to Mrs. Spicer, I saw her come in!" He loves her and was willing to get up and do this. Then I threw in, then we'll sit in a different spot. We said our hello's and moved to the other side of the back, hoping another mom wouldn't have the same big idea to be close for a quick exit like the rest of us. This also gave us a view of the bell choir and we used that as our excuse to move, "Look, now we can see them play the bells!" He seemed suspicious, but went along with it. I love those parenting moments when Todd and I are on the exact same page and with a look and not a word, go into the same mode!

Soon after the bells started playing and I could see his body relax. The music would be the saving grace.   The church has a new pastor whom I have heard a lot about. He is young, he is kind of cool and I've heard nothing but fabulous things about him. As soon as he spoke, I watched a smile form on Daniel's face. He was everything I'd heard about and more. He is engaging, funny and makes you feel like he is talking to you. My confidence was building.

We heard from the Book of Ruth and of Gleaning. I was enjoying the stories. He relates them so well to his life and ours. And as Daniel would start to get antsy the choir would sing, or we would have a hymn to sing and he would stand and sing along with the words in his sweet clear singing voice and it would break up the mood. I was really starting to feel confident.

I desperately wanted to know what time it was. I finally asked Daniel, who always has his watch on, and he said 11:05. Darn, just over half done. I knew it was a risk to ask, because it could set him off if it was too long before it was over, but my curiousity was getting the best of me. Then what happened next, was not what I was expecting. Daniel was sitting there quietly and a huge smile came over his face. Then it started. The giggles.  He had the giggles. Big time. He was trying SO hard. Covering his mouth, trying to be quiet. As it goes with the giggles, they are contagious. I couldn't help it either. I looked at Todd and we both were smiling and giggling ourselves. It eventually subsided. I don't remember what it was that broke it. Probably because I love when he gets the giggles. It is infectious and it makes me happy to see him happy.

At one point I heard Pastor Andrew talk about a discussion he had with some people of the church. I must have missed the beginning of this and been watching Daniel, but I snapped to attention when he mentioned that a person on a committee was talking about the expense of installing a handicapped door and if the large amount of money should be spent on it. The discussion was saying that they don't really have anyone at the church who needs that (as a man was at the end of our row in a wheelchair?). I am a bit confused on what Pastor Andrew said in relation to this and I'm sure someone else who was there can clear it up for me, but my mind immediately shifted to a story I heard once at a training. I still don't know if this story happened or if it was metaphorical, but it stuck with me and applied so perfectly to this discussion that I missed part of it. It was this:

on a very wintery day when the children arrived to school the paths were still not cleared for the kids. The custodian was working feverishly to get it cleared and safe for the kids. Shoveling and salting and laboring, sweating under the pressure that the kids were arriving. The children wanted to get into the building on this very chilly day and were asking when he would be finished with his work. The custodian was working and working to clear the steps to the school when a girl in a wheelchair asked if he would clear the ramp first. The custodian said no, if I clear these steps more of the kids can enter this way, you will have to wait since there is just one of you. To which the little girl replied, "but if you clear the ramp first, we can ALL enter that way".

I love that story. People often wonder why you accommodate for that for one person.  The lesson obviously being that if you make it accessible for that one, you are actually clearing the way for everyone. If you have a door that not only one can enter through, but all can enter through, you make your church open to everyone. Maybe you don't have as many people at the church who need it, but maybe they don't feel like it is handicapped accessible enough? Maybe people are being left home and excluded because of it.

This story always affects me so much. Autism, while not the same as being in a wheelchair and physically excluded from a place, is a very isolating thing. My mind went back to 1st grade and I was waiting at the school to go on a field trip with Daniel. There was a large group of moms waiting to do the same. They of course all knew each other and everyone was asking this and that. It struck me at that time that I didn't know one parent there. I had missed on all the play dates, the phone calls, the chatting at the park and at the school. I was just working to get my child TO the school every day. You don't get invited to as many places, if anywhere at all. You don't fit in. It is lonely.

Because of this, I know when families are excluded from their church too, is very difficult. For the families who attended church and were asked to leave that is a terrible thing.  Then there are some of us who just don't put themselves out there and avoid being excluded as a self protection. It seems it should be the place that welcomes you with open arms, no matter WHAT. It is a community. A safe haven. And with that I heard Pastor Andrew say something about the church being a place "inviting all people". That is how it ended. On the first day that we were there. They ended talking about inclusion. We said the Lord's Prayer which was written in the program and Daniel read along with everyone else, something I learned on those Sundays at the Catholic church and recite every day to myself and we sang another hymn. Then it was over. One hour, successfully completed. Our first day in church. I didn't get a chance to talk to Todd about it after. He was leaving town and we went into that mode. But I felt so happy and content all day that we had accomplished that. That Daniel had enjoyed it. That the message was about inclusion in the end.

Autism and Church

2011-11-13T23:11:00.000-05:00

This fall our family resumed a discussion that we have had on and off for years. The discussion was about church. Zachary, my youngest came to the age when he could start attending the middle school Youth Group that happens to be run by a good friend of mine. She does amazing things with her teens and they get to experience things they wouldn't get to anywhere else. Zachary happily became involved and quickly fell in love with his Wednesday Youth Group.

Church is not something we have ever done as a family. Todd did with his family as a child, but my memories of church only revolved around going with which ever families house I had slept over at the Saturday night before. I spent a lot of time in the Catholic church but only because my best friend was Catholic! Church was not a part of my immediate family.  This set me apart from a lot of other people growing up in a city that is literally referred to as the city "with a church on every corner". Church, after all, is supposed to give a sense of community and belonging, among other things. At least I think so.

Over the years, discussion of bringing our boys to church would surface we would have a short discussion then it would quickly dissipate. There were so many questions of not only how Daniel would react and if he could sit through a service but would he be accepted. I can't tell you how many families I have come across that were not welcome in their church because the congregation could not accept the differences of their child. The fact that they couldn't sit still or blurted out, or whatever happened, made them unacceptable. I still can't understand this. How could a CHURCH tell someone they aren't welcome? That is just mind boggling. It has never happened to us, but I've heard it many times. That is enough to scare me. It is just another way that autism is so isolating to families. Not to mention the fact that our lives are a LOT of work anyway. Thinking about all the prep it would take to get Daniel prepared for church...well, it's just overwhelming. It has been much easier to just keep Sunday a day of relaxing. Therefore, the discussions would end and we would go back into our Sunday routine of sleeping in, hanging out and swimming.

On Wednesday's before Youth Group, the church serves a dinner for all who want to come. We have attended a few times when the food works for us, because between Zach's allergies and Daniel's pickiness, it seems like it would be impossible but we have actually all eaten there! During these visits, we didn't realize it, but Daniel was acclimating himself to the church. One of the first steps of starting something new is getting used to the surroundings themselves. Without even realizing it, we were doing it. Frankly, it was nice to be falling into Step 1 without even worrying about it. It also gave us a taste of the church community. I liked being there, with the elderly church ladies and the little toddlers and the teens and the families. It was nice to feel a part of something and I could see Daniel liked it too. Even if only for a few minutes. Even if the pinball machine, and snacks are a lure. Who cares? It's important for him to feel comfortable. That is something we can build on.

Then Daniel went up to the Youth Parlor with Zachary one night. Just for a few minutes before it started. Most of the kids are up there "hanging out" so Daniel went up with a friend of ours to check it out. Much to his surprise the youth parlor, among other things, has 3 of Daniel's favorite things:
1. a full sized pinball machine!
2. a disco ball hanging from the ceiling and
3.  popcorn

Any one of these is enough to sell Daniel on a place, so having all three is like the Holy Trinity! (look at me getting all churchy) He was hooked.   So now if time allows, he goes to the youth parlor for about 10 minutes before Youth Group starts on Wednesday to play a game of pinball, or pool (oh yeah, a pool table too) walk around and have a few bites of popcorn. The first time he ever went to the Youth Parlor a boy named Jack who is Zachary's age offered Daniel some of his popcorn. It was only a few weeks ago that Zachary told me that now whenever Daniel goes into the Youth Parlor he goes and finds Jack to ask for popcorn. After all, he gave it to him the first time, he MUST be the keeper of all of the popcorn!

Watching Daniel become familiar with the church made Todd and I think it just might be possible. So the discussions began again. I contacted my friend who is in charge of the Youth Group and sort of got the schedule of what was coming up. Today we took the plunge. We jumped in. Ready or not. But, for this, you'll have to stay tuned for part two. . .

Gut Wrenching

2011-11-10T13:12:00.001-05:00

Allow me a little self indulgence today.

This blog post doesn't have a direct relation to autism,

but I do feel it is related to all children.

Thanks for the opportunity to help me sort

out some of my own feelings through the written word.

I find myself obsessing about this Penn State mess. So much so that my thoughts are spinning around in my head. I keep thinking about a blog post and I wonder why I think I need to write about it here, where the subject at hand is autism and special needs. I am so mad about this fiasco I can't get it out of my head. While I know everyone is disgusted and horrified, I seem to be a bit further over the top. I know that isn't unusual for me to be over the top, but injustice is something that doesn't sit well with me.

After a bit of time of self reflection today the pieces finally came together. Age has an amazing way of putting things into perspective doesn't it? I am going to assume most of those reading this know the background of the Penn State scandal. However, I do realize that I get many visitors to this site from the other side of the Atlantic so unfortunately I should link an article. HERE.

The boy that is referenced in the article is "about 10". The fact that my youngest is 11 is not lost on me. I keep picturing him as the child so brutally taken advantage of by a man he looks up to with awe. It obviously sickens me. The amount of people who buried this is astounding. Not just the coach, athletic director and university president, but what about the charity that was supposedly notified not once but twice? How many people there, kept sending kids out the door with Coach Sandusky? How many people just felt something was wrong but ignored those feelings? They obviously aren't as morally required to follow through as those who knew information first hand (especially who witnessed with their own eyes) but not enough people stand up for what they think or feel.

I have been thinking a lot these last few months about Zachary (11) as I send him off to school. You see, when I was in 6th grade and 11 years old myself, a tragedy that changed my life unfolded. My very dear friend Linda was kidnapped while she was on her safety post. Taken off the corner and thrown into a car. Never to be seen alive again. She was found later that day, dead, hands bound. I won't go into the details any further than this, but it rocked our quiet Christian town and I was smack dab in the middle of it. My mind today has gone back to the reports of people from a block away who saw Linda taken but were simply too far away to be of help. I felt for those people when I was a kid and I feel for them even more now that I'm an adult with children. They reacted, tried to chase a car, which they would never catch, in a morally reactive way because a wrong was being done. How can a man, young man or not, walk into that locker room and walk away? Did the child hear someone and become hopeful his rescuer had come only to hear descending footsteps? These are the things that haunt me. Did Linda hope that someone would catch her and save her from the horror that she couldn't believe was unfolding? That snowy day looms in my mind, as I sit here and the first snow falls from the sky, as if a sign that someone is thinking about me too.

Now having a child that age, it is bringing back these feelings. I have discussed them with him before, and given him instructions not to approach a car, no matter what the reason, no matter how innocent, only for him to say "but what if the person just wants to know the time?" It is hard for an innocent child to understand the horrors of our world sometimes. I, unfortunately, was not so lucky and was put in the middle of it. The years following that, I was questioned by reporters at anniversaries of the kidnapping, at festivals in our friend's honor, put on the Bozo The Clown show to promote the children's festival. I was a painfully shy child and this was very difficult for me. I understood the need, but the same question of "do you miss her?" from reporters made me fantasize about punching one of them in the face. I wanted to run away, but was constantly told I could do it. We were helping families and children by getting the word out after all....

I have always been a person who listens to my "gut". I follow it and it serves me well. If I have a bad feeling, there is a reason why. A few years ago I was in my house in the middle of the afternoon and walked outside because something felt wrong. I can't describe it. I looked around, couldn't find anything and walked back in. Only to be pulled once more outside by that hollow feeling inside. I then started walking up and down my street only to finally find an elderly lady 4 houses away that had fallen by her garage and couldn't move. That was an instinct that made me look. I was glad I followed it. How many people had an instinct about Coach Sandusky? How many more boys are out there with stories to tell about him?
How many people didn't listen to their gut? Not only listen, but then stand up and protect those that need to be protected. I see that in myself now. My need to protect kids, to be an advocate for them. To be the parent that points out when the system isn't working for their kid. To advocate for those who cannot advocate for themselves. I can now see where some of that came from in my life. As a child I watched an innocent girl taken from the world. I learned at a young age that we need to protect each other. I only wish that in a place called Happy Valley, someone else would have done it sooner.

Dancing, dancing, dancing....Dancing machine....

2011-10-20T10:29:00.000-05:00

Friday night Daniel was invited to an all abilities dance sponsored by CADSA (Capitol Area Down Syndrome Association). This was the second annual dance in recognition of Down Syndrome awareness month, but the first time for Daniel to attend! My friend Amy from Life According to Emma and Joe blog was one of the coordinators and she did a fantastic job! It was a Mardi Gras theme, which is perfect for Daniel, purple is involved!

A few nights before the dance I mentioned to Todd that maybe we should ask Daniel if he knows how to slow dance with another person. I thought it may come up, and wanted to give him a quick tutorial. The night before the dance, Todd came down from Daniel's room with a big smile on his face. He had asked him if he knew how to slow dance. Daniel's response was "sure" and stood up with his hands up, moving in super slow motion. Literally, dancing slowly. I wish I had a video of Todd showing me this. I was laughing until I cried. It was honestly the most adorable, sweet thing. But Todd showed him how to simply put your hands on a girls waist and sort of shuffle side to side to the music. I will never look at slow dancing the same way again.

One thing that they did a great job with is just getting the word out! They contacted classrooms all over to get the dance advertised to all ages and all abilities. The teachers were wonderful and kept telling the kids about it and passed out fliers to bring home. The result was a wide variety of kids. Kudos! That is a lot of work. The other thing Amy decided to do was find volunteers to chaperon. I decided to ask our friend Amanda, who was one of Daniel's fabulous swim coaches last spring. We continued to work with her throughout the summer. She is a great swimmer and has that gentle knack to get Daniel to do things that I never ever could. In short, she is wonderful.

Amanda agreed to chaperon. Amy's idea was, especially for the older kids, for everyone to have dance partners that AREN'T their parents. For the most part, I think most of the kids are happy to be out dancing as a group, and just having fun. I wasn't really prepared for the transformation that happened because of this set up. Amanda was obviously a partner for Daniel (and others if they needed it). I brought Daniel to the dance, which was at our local community center. (close to our house!) not sure what to expect. The invitation said "Sunday best", so I made Daniel change into a collared shirt from his usual t shirt. He put on a purple. I must admit, this was a happy accident. I hadn't connected the Mardi Gras to purple at the time, but he looked good.

We arrived to the community center, and waited in line to pay. The music was filtering down the hall. Daniel was excited. I could tell by the way he was shifting his weight back and forth, using his now 6 ft size to peer over the top of people into the room. When the line wasn't moving (at all) I told Daniel to go check out the room while I waited to pay. At that moment I saw Amanda walk by the door dressed to the nines in a sparkly black dress. She looked amazing! She is a beautiful girl, but we usually see her with a swim cap on and Speedo swim suit. It's just not the same!

After Daniel found her they came out to say hello to me. By the look on Daniel's face I could tell that he was feeling as though he hit the lottery BIG TIME! He LOVES a pretty girl. Autism or not. Those hormones have kicked into high gear! He (as of today) is a fifteen year old high schooler. (HAPPY BIRTHDAY DANIEL!!!) Any man would be thrilled to have this girl paying attention to only you all night, but for this night, it was Daniel and he was beyond thrilled. We were off to a good start.

Amy found me and told me that she had a conversation with Amanda and they felt fine with me leaving for a few hours. I thought I'd stay for a while, and immediately began talking to parents staying a very respectable distance from Daniel ie the opposite side of the room. They immediately hit the dance floor. I honestly wasn't paying much attention to them, but would occasionally glance their way, saw him talking to her, dancing, getting water and a snack, all the usual dance activities.

I had a good time connecting to some parents that I don't know very well and gathered some good high school information. I talked to the dad of another kid on the swim team. A hope we have for Daniel! It was great. By that time I had been there for over an hour and decided I might as well just STAY. So I did. I went to talk to Amy's husband Chris (still far away from my teenager). When YMCA came over the speakers. I don't know why, but that song has always gotten people out on the floor. Every wedding, dance, and when I was a kid, the roller skating rink. I clearly remember that song coming on and everyone yelling and getting out to skate around that rink arms in the air spelling out Y M C A....It's fun to stay at the Y M C A.....it still has the same draw. Maybe it's because we can all do that "dance?" Not sure, but I was surprised when I saw Daniel and Amanda sitting at a round table chatting. From afar it looked rather "normal" although I'm sure he was repeating lines from Toy Story or Sesame Street. She was listening intently, nodding and smiling. (love her) I walked over and said "Daniel YMCA is on, aren't you going to dance?" He turned to me slowly and gave me the most evil look. I kind of backed up and said "I'm sorry, am I interrupting?" He replied, in a growly teenage voice, "YES you are interrupting me....." Amanda had to look away because she started laughing. I was surprised and well, a little happy to see him asserting independence. But WOW. Really? How funny is that?! But they did hit the floor, pictures below.

I backed away slowly and let him reclaim his space. Hiding in the corner. He did come charging up to me a while later pushing his watch under my nose saying "look at my watch. What does it say? It says it is 8:17". For this reason alone, I'm glad I stayed. I knew this meant that he usually gets in the shower at 8:15 pm. I had forgotten to tell him we'd be out later that that and it was "OK". If I give him a heads up now he is OK with it although he might get slightly agitated. I'm not sure how stressed he would have gotten if I wasn't there to interpret this and assure him that it was OK and it was a Friday night and staying out late that night was an exception. He proceeded with the evening.

Later while I was talking to someone I heard a slow song start. I turned around to see Daniel and Amanda dancing together, just as Todd had instructed him. I couldn't believe it. And he looked SO PROUD.

My heartfelt thanks go out to Amy and Amanda for helping make it a memorable and amazing evening for Daniel! I know it wasn't about him, but knowing that the time you spent planning something or volunteering your time touches each person individually hopefully makes all of the time worth it! We look forward to next year and what will come from it. Maybe next time I can leave, and not cramp Daniel's style so much!

Daniel and Amanda

during the raffle, Amanda paying attention and Daniel catching me with the camera

Slow dancing.....

A little YMCA, once he was finished giving me the stink eye.....

Fair Practices?

2011-10-13T19:21:00.000-05:00

We continue to struggle, particularly with one teacher at the high school about properly accommodating Daniel's tests and quizzes. She has made SOME of the accommodations regarding classwork and notes, and now is going a bit further with the tests after our IEP (only after 2 tests have already been taken and failed). One of the accommodations I am requesting (which has always been done in the past in every dog gone class) I am still getting no response about it as of 8:00 tonight, the night before yet another quiz.

We had a discussion, led by the Special Education Director, explaining some of the basics of autism, which appear to be lost on these people. I am so fortunate to have the Sped Dir explaining the nuances of autism and why it is necessary for him to be tested differently. The AI teacher consultant also looked at the tests and said they were confusing to HER not yet what he would see? So what is the problem you ask? I don't know. There seems to be a disconnect in what she will bend on. Possibly she feels, it is giving him too much. He "should" be able to give her the information if he has "truly" learned it? Despite us explaining that people with autism often understand the information, but have problems "outputting" the information. I have watched her shake her head, put it down, and roll her eyes. She doesn't get it. She feels we are the problem. When she started the sentence, the dreaded sentence, "I can't do this for one.....child" the answer I gave was, "that's why you have a special ed teacher and an autism consultant to help with these accommodations. I am still being ignored. I hate to be ignored. I hate that Daniel is failing these tests and quizzes. I hope that he won't become so frustrated he starts acting out. I hope he doesn't start feeling bad about himself. I hope it doesn't hurt his self esteem.

When I quiz him on his flash cards, he KNOWS some of this stuff. He is getting some of it. I'm not saying he has a complete working knowledge of the 9th grade history. Can we ask more? I could take the easy way out, but I, once again, need to get my point across. I can be as stubborn as she is. This is MY CHILD. I am past being sad and crying and frustrated. I'm mad.

I came across this comic on Facebook today. It's official title is No Animal Left Behind. It very succinctly shows my feelings regarding accommodating work for our kids with autism. We can't all be tested the same. Asking him to perform on these quizzes and tests the same as all of the other kids is as ridiculous as asking that elephant to climb a tree.

A Fulfilling Life

2011-10-12T09:45:00.000-05:00

Saturday I brought Daniel to his first ever Kiwanis bowling league. He has always enjoyed bowling as long as the bumpers are up.   He would be angered by the ball rolling down the gutter, not even hitting one pin. The bumpers make it more fun, and more successful.

I have heard about this league for a few years. For some reason I have never been able to get our act in gear to get there. I would forget about it then it would have started a few weeks before. I hadn't realized that you could just GO. Even weeks into the season. I now have some mom guilt that I didn't get it done before. But you do what you CAN right? I keep telling myself that. YOU DO WHAT YOU CAN WHEN YOU CAN.

Apparently, this year, I can. We had to get ourselves around a bit earlier than normal on a Saturday morning, but it was worth it. We arrived to the new (to us) bowling alley on the other side of town. There were lines and paperwork and confusion, but Daniel handled it like a champion. He enjoyed checking out what this new bowling alley had to offer. The most intriguing thing being the "Wowie Zowie gumball machine". You put in two quarters and the machine releases a (jawbreaker, but Daniel continues to call it a gum ball, he would never actually eat either of these things) and it goes through sets of tracks and gears before it is released. This is heaven on earth to Daniel. I even found a video on you tube. You tube has everything!

He knew lots of kids there from his summer camp, and other various things around the city. He was especially excited because Adam (changed the name) came and they got to bowl together.  Adam is 2 years older than Daniel and I've always thought they were a good match. He also has autism but it manifests in different ways. Daniel tends to just talk in statements and quotes and talk AT you not asking questions.  Adam tends to ask mostly questions . . . non stop. This seems to work because they are direct questions and Daniel can answer them. It makes for a good combination and I've always felt a real friendship could emerge. We have never actually been able to get them together much because both families have so many challenges, it never seems to happen. My hope is that this every other week bowling is a chance for them to spend more and more time together.

Daniel is nearly 15. The future is on our mind more than ever around here. Where will he fit in? What will he do? We have spent so much of his schooling with him only in general ed. His general ed peers have been (mostly) wonderful. He occasionally gets included in parties and functions, but lets face it, it's once or twice a year. He used to walk with kids and ride the bus with them. But as his peers have gotten older, their ability for independence has put an even larger gap between them and Daniel. There isn't anything wrong with it. It is what it is.

This look to the future has caused a shift in my planning that I hadn't anticipated. I have been taught (ok I feel like it's kind of beat into you) inclusion, inclusion, general ed general ed into my head. But what I have found is that while Daniel has been off on this general ed track, there is a whole community and friendship that has developed and he has not been a part of it.   At the beginning of the school year Daniel requested to take the bus to school. For the first time since 3rd grade I added "special transportation" back into his IEP. The bus comes to our house and picks him up. He LOVES it. He says his friends are on the bus. There are 5 kids on it. It's not too crazy. He doesn't have to walk to a bus stop. It's a good thing. For ALL of us. I find myself wondering what I was fighting. Who was it good for that he was on the general education bus, him or me? Actually at one point he and Zachary took it together so that was a convenience. Kids got to see him doing the same things as him. That is always a good thing. But maybe just maybe, we can take the best of both worlds for Daniel. He went to a special ed. summer camp. His swimming includes a lot of these same kids. He is socializing more. He is, well. Happier. He was on cloud nine talking about bowling last weekend. He shared it with his teachers. He saw Adam at school and they talked about bowling. He's excited. When Zachary asked me if he could go bowling too I said "no, it isn't for you" which surprised him. But you know what? It felt good to tell him it wasn't for him. I never felt the tiniest bit self conscious for Daniel at the bowling alley, even when he got upset because our lane was breaking and he hit himself in the head and bit his hand. I solved the problem and we moved on. It felt good that people understood his frustration and all the parents had been there before. It felt even better watching Daniel literally jump for joy at his strike and have everyone CHEERING for him, high fiving, and fist bumping for him. I'm a little ticked off I didn't give him this gift earlier. But I'm thankful we have found it now.

I just sent an email to the boys swim coach at the high school about Daniel being included on the team. (At Daniel's request). Like I said, best of both worlds. Isn't THAT what we want for our kids. To be happy, and be able to navigate the world. To have it ALL. To enjoy life and fit in with those that he feels comfortable with? To give them opportunities then let them see what they love?   While I have of course always KNOWN it, the push into general ed has been good for him. I think it has challenged him in so many ways, but he has risen to that challenge over and over. But he gets confused by the chatter of those kids, he can't follow along with their discussions very well. I know that in four years, those kids will all be leaving for college. Where will that leave Daniel? I feel very at peace with us balancing between general education and special education.   We need to make ALL opportunities available to him, whether or not they are what we originally envisioned for him as a baby. I've had people ask me, where he could work? can he go to college? will he get married? Honestly, do you really know this about ANY child? I can't say that I have these answers, but I know what I want for both of my kids is happiness and a fulfilling, independent life. That can take place in many different ways. We all need a little bumper to help us every now and then.

Hakuna Matata

2011-09-19T09:04:00.000-05:00

Saturday was a big day for Daniel. He had been eagerly awaiting it's arrival. You see earlier in the week I mentioned that his friend Emma asked if he wanted to go see The Lion King 3D with her. He dropped what was in his hands and said "RIGHT NOW?" Ready to bolt out the door and go. That says a LOT since he still needs to have some warning for everything. The lead time for those needed warnings has shrunk. But it is still needed. So to see his drop his snack and eyes go wide and practically start off to the car, well, I knew this was a BIG DEAL.

The rest of the week went along with a daily countdown to Saturday from Daniel. Emma and her entire family, lead by mom Elizabeth, who has her own experiences with a special family member, have been a blessing to Daniel and all of us. I have written about them before here. So the planning of this wasn't too much of a surprise, but it couldn't be more appreciated.

Saturday morning arrived with Daniel bouncing out of bed. His first words were "I'm going to The Lion King with Emma today!!!" Elizabeth and I tagged along. Partially to be there in case Daniel had difficulty, and partially because we both wanted to see it on the big screen in 3D! Daniel mostly enjoys the movies but he usually gets impatient 60 minutes in and you have to talk him through the rest. I didn't feel comfortable leaving Emma with that. He loves popcorn and that's a huge draw, but it can also make him feel sick and he has no control to stop eating it. He'll dig into whatever is available, then be sick for 2 days and onerier than a wet cat. So, I thought I had to go, to help through this.

Daniel also has trouble with any angst in movies. He has been known to yell out "Pooh look out!" and "Woody!!!!" With fear that his animated friends will come to their demise. The separation of reality and movie is a very fine line. He seems to be understanding this more, if we remind him (ahead of time). So before we left I had a talk with him about all of the scenes in this movie that have a high anxiety level. When he watches DVD's he only watches what he wants, and in the case of the Lion King, it's the music. He doesn't bother with all that pesky dialog!!! So I prepped him for the fight scenes and stampedes.

Movie time came. I told him we'd be picked up at 2:10. We were on the porch at 2:05 waiting on our bench. He wasn't going to miss a moment!!! I could feel his excitement as we waited for our friends. We bought tickets, popcorn, drinks, got our seats where I told him "15 minutes to show time". An important part so he knows what to expect. I wish he'd have more of a conversation with Emma, but when he gets excited it becomes even more difficult for him. The excitement brings out dialog from movies in echoalia that exhibit, well, excitement. She is so sweet though, it doesn't seem to phase her. Finally, it was time for "Our feature presentation" which is what Daniel likes to announce to everyone. It was a packed house! The two week limited showing has gotten everyone out to the movies. Daniel was singing along with the songs, (ok, so was I). And he was better than I had EVER seen him in a movie. He didn't get restless, he didn't ask a thousand times how long until it was over, not even once. I think he was so happy to be with them he didn't want it to end. It was wonderful, and I was so proud of him. We all left the theater happy.

We decided that Hakuna Matata should be what Daniel thinks about whenever he gets upset by something. If you don't know, (but how could you NOT?) it means "no worries". I told him whenever he makes a mistake or someone else does, instead of getting upset he should think of Simba singing that song, because you honestly can't be sad when you think, of it. It's impossible. As you will see in my next post, he took this to heart, and of course it is coming back to bite me! Hakuna Matata! Oh, and here is a picture of Emma and Daniel outside of the movie theater. Then I'll leave you with a song....

School's in Session

2011-09-08T08:32:00.000-05:00

I can't tell you how many posts I've written in my head since February. Countless. I just haven't been able, for whatever reason, to type them. Then I get behind and I think, should I go back and write things that have happened of significance or just jump in to today and leave out all that got me to this point? I guess either way. Nothing is really "wrong", it's my blog right? Yet I struggle with it and, like those pictures you just can't get organized, you just keep getting further behind.

So I'll start with now. Daniel just got on the bus. It's the third school day of the 2011-2012 year. The day at the Sneathen house, when the pep in everyone's step slows down, the novelty wears thin and we are all just tired. Our puppy, satisfied that Daniel is off safely (yup that's something you all missed. I said we have a dog), is curled up by the fireplace. I'm pecking at the keyboard with one hand, since I broke my wrist and waiting for son #2 to arise. Their schools start an hour apart so I work in shifts! Watching the news while working in the kitchen this morning they had a story about how people get "post vacation blues" and I thought, hmmmm, you betcha. If it is common among the general population, I'm sure that us parents of spectrum kids get it worse. I know I do.

Daniel started high school. Yup. High school. It's such a cliche to say, but where did the time go? How did we get here? Wasn't he just diagnosed? Isn't he still 4 years old and climbing onto the school bus with me following my baby in the car? It certainly seems like it. In some ways not much has changed, and in others it seems like the longest road to get here.

This momentous time started out rocky. On his very first day of high school the bus forgot to pick him up. Well the actual bus didn't forget, someone screwed up, royally. Can you tell I live with a literal person?He had a meltdown on our front porch wanting the bus to just COME like it was supposed to. It was too late and it had started its next run. My saintly husband came home from work and drove him. Daniel was in full in meltdown mode because this was NOT THE PLAN and Lord knows in his mind being late is one of the seven deadly sins. But he recovered once he got to school and proceeded with his day.

We went back to him riding the special ed bus this year for many many reasons. He hasn't ridden it since 3rd grade, I believe. There isn't really a general ed bus for our neighborhood. We are within the 2 mile radius required, but yet, it is too far to walk. The kids he used to walk home with in 5th to 8th grade all have other things going on now that they are in high school, or they ride their bikes or go to friends houses. It's fine. It is just yet another reminder how far they have all come and well, we haven't. Sure, Daniel's made great progress. I know that. But seeing how MUCH MORE the other kids have changed is a sobering reminder each and every fall of how much further behind Daniel is. Watching my now 6' tall child climb the steps of that small bus 15 the same one he rode when he was 4, is surreal to say the least.

Every fall, like all parents, we have to adjust to new teachers, figure out the kids schedules and expectations at school. It is always very difficult to decide Daniel's classes. He doesn't quite fit in anywhere. He can do Algebra, but his reading comprehension is low for general ed. He doesn't, academically, fit in with the basic room, but obviously not with the rigors of high school classes. Yes, we have his work accommodated or modified where need be. But nothing ever feels "right" to me. When I changed his schedule from 4 core classes to 3, along with band and 2 academic supports I could breathe again. So I figured that was a good sign and stuck with that.

The thing that gets me at every transition is trying to explain my very unique boy over and over again. It feels a bit like the movie Groundhog Day and I want to just hit play on a recorder to save myself the grief. I always feel like (most but not all) staff members have to restrain their eye rolls and whisper to their colleagues about the crazy autism mom wanting to control everything. Why do they not understand that while I KNOW they know their jobs, they don't know MY kid. I KNOW my kid, yet I always feel it. Every time. Mostly, I feel their attitudes change as they get to know me. But it is so frustrating to not be heard. To be described as "anxious" (yes someone wrote that in an email to me) instead of proactive and having your kids best interest at heart. It not only depresses me, but it angers me. I actually said to my husband yesterday that I wanted to "go beat the crap out of _______". Of course I was kidding. Sort of. He laughed and commented that it says a LOT coming from me. I am sometimes too calm and laid back.

The fortunate thing through all of this planning and maneuvering and yes arguing with the school, is that Daniel doesn't seem to realize it. I'm proud that I can keep calm and smile and get him where he needs to be with a hug and such enthusiasm. It isn't until they leave that I slide into a slight depression and start perseverating on my next step. Planning what to say next to whomever, reading emails of why the school isn't doing what they said they would, feeling like I'm falling deeper into sadness, being tired because my body is wondering why I am suddenly up when it's dark instead of sleeping in to 9:00 and having coffee with Regis and Kelly.

Then at the end of each school day Daniel comes bounding off the bus, asking me how may day was, unpacking his backpack with such enthusiasm and yesterday pulling out these pictures, so anxious to share them with me. I remember the days when he had no "shared joy" the autism gurus call it. He showed me his drawings with such excitement. He couldn't wait to share and explain each one. The same drawings he does over and over again. The same drawings I have a whole file of. All the things he loves. Rainbows, bats, logos, Wallace and Grommit, Blues Clues. He was so contagiously happy, that all the things that seemed wrong, felt very right. If only for a moment. How can you feel sad when looking at rainbows and Pooh? Until the next day. When it starts all over for me. Then slowly, as things start to fall into place, we work out the kinks, the sadness dissipates, and we settle in for another year. I don't know when that will be. In the mean time, I'll keep looking at my pictures, with happiness of his shared joy mixed with the sadness that in some ways, we are in the same place. That things change, but they also stay the same.

Self Advocating

2011-02-23T13:35:00.000-05:00

It seems that for years we (when I say "we" I mean our family in conjunction with speech therapists and teams of people!) have been trying to get Daniel to tell us what he needs. Now it seems that is all he is doing and it can be a little much!! Working backwards. Yesterday he had swimming. It was his first swim with "Tuesday girl" since she came extremely late and sent him into a melt down (see previous post). He was very anxious before going yesterday which I didn't understand until we arrived at the lobby of the pool where we meet the coach every week. 45 minutes earlier he was kicking the wall with his bare foot (very hard) and screaming at me. This was in reaction to me telling him that perhaps it wasn't a good idea to bring his I Touch into the bathroom in case he dropped it in the sink or toilet. (I was speaking from experience by the way). The melt down took me by surprise until we went into the lobby. I saw his face light up and he said, "Hello Tuesday girl, I'm SO glad you aren't late!!" To which everyone in ear shot laughed. They have all been commenting on Daniel's outstanding ability to say EXACTLY what he needs. But when does it become too much? He needs to still be able to handle a "no". That is the tricky part.

Regarding the I Touch above. He loaded a new application an "app" for those who know this sort of thing. It is Tom the Cat. My friend Jodi had it on her I phone this weekend (more later) and Zachary saw it and downloaded it. He showed it to Daniel and now Daniel is totally obsessed. Here is an example of Tom in action.

You can pet Tom and make him purr, feed him milk, punch him (yes) and the kicker? You can talk to Tom and he repeats everything you say, in his voice. This is like Daniel's dream. But then the realization came that his Touch doesn't have the microphone. Todd broke the news to Daniel with trepidation, thinking he would have a break down. Instead he said. "You can go to the store and get me a microphone". Excellent problem solving indeed, but we happened to be in the middle of a severe winter storm and in the process of getting 15 inches of snow. We weren't going anywhere. When Todd pointed this out to Daniel he said, "What do you mean you won't go?" Again. Excellent job expressing yourself. Three cheers! But um, no. It's difficult NOT to do it because you are so happy he being so clear in his needs. But part of you is thinking "you aren't the boss of me kid!". It's a tough balance.

Just so you know the "end" to that story, Todd did go out the next day and after searching all over we discovered that the headphones that came with his Touch had a microphone built in. So we had them all along, we are just not technologically advanced and didn't know what it was! So all is right with Tom, except that he has it all the time and even wants him to go to the bathroom with him. . .

Still working backwards, now we are to Friday/Saturday. We went on what I can now say is annual ski trip since this was year two. We packed up our entire existence and went 3 hours north with 5 or 6 other families. Friday night we all went tubing. SO much fun. I call it "lazy mans sledding" because you get a giant inner tube, hand the handle to the tow rope operator, plant your butt in the tube and he puts it on the tow rope and it drags your lazy butt up the hill, where it pushes you off to the top of the run and you go down the hill yelling with glee! I love it! It's perfect for me! All the fun with no work!! Because of all of these things, Daniel loves it too. He does NOT like going backwards down the hill, but he settled in and we did our best to keep him forward, by Todd hooking their tubes together so he could control it a bit. He had a blast. There was swimming and eating and socializing. He loved it.

But this year, Daniel wanted to ski. Of course he thinks he'll just slap on skis and swish down the hill with the Wallace and Gromit theme song in his head.

There is a point in one of the movies that someone is skiing with this song playing, so that is what he thinks. We of course know this will be a nearly impossible feat. But he wants to try and all be damned he was advocating that he was going to ski!

Saturday, we rented skis for him. Size 13.5 men's ski boots, beginner skis. The whole thing. After a lot of wrestling around in the snow he FINALLY got the skis on. When it takes 20 minutes to get him to properly put his boot into the binding, you know this is going to be hard. He was very frustrated. So was Todd (the primary teacher, yay me!) Daniel was ready to get on the magic carpet and go to the top of the bunny hill. Todd told him "no". He had to learn to walk around, "skate" around, snow plow "make a pizza" and stop. This was very frustrating to Daniel. He was ready in his mind. He had the skis, he had the theme song, let's GO! So there was a lot of Daniel complaining and asking to ski and Todd saying no. Then Daniel would get in Todd's face in frustration. I don't know how long this went on, but at last we called lesson 1, quits. Daniel and I went back to the room. Todd went skiing down actual hills with Zachary and Daniel said he was trying again LATER. Yup. After that, he wanted more. Like I said, when he makes up his mind. Look out!

All be damned, later on, he did it again. This time he got the skis on quicker. Todd literally pulled him around with Daniel in a crouch, so he could get the feel of it. He could walk around, he could turn around. He fell a few times and the world didn't end. Todd helped him up and they did it some more. He never got to the hill. He couldn't "make a piece of pizza" with his skis. Sometimes it's just hard for him to get his body to do what his mind wants it to. Or he doesn't understand (bad receptive language) what you are asking him to do. It has got to be very difficult, to have someone explaining something to you and you don't get it. He now simply says, "I don't understand" and we try it a different way. He is self advocating.

I think he did really well. He had two mini "lessons". We made progress. I am sure that sometime in the future he will be going down that hill, humming the theme song in his head, more likely out loud. I know he'll do it because he didn't give up. I can see the determination. I can't wait to see it happen and I'm even happier that I don't know how to ski either which makes it officially not me as the teacher!! ha ha ha! Todd was amazing!

I can understand his frustration in all of these instances. He is telling us what he wants which is what we have been asking him to do. Then we are telling him it will be different. It is frustrating. But it's called living life right? Autism or not, you have to learn when things are appropriate. I am so pleased we are having this problem. You get what you ask for and you dig in deeper. You keep working. Along the way, hopefully you enjoy the ride. It's not the lazy man's way, but sometimes the harding the work, the sweeter the reward.

Progress and Powerless

2011-02-15T21:26:00.000-05:00

Just when things are moving along nicely. . . Friday, Daniel had an Activity Night (again!). I went and worked concessions. This gave me the opportunity to stay out of Daniel's way, yet be there for him if he needed me. Without any prep he came and checked in a few times. Once to tell me he was going to the hall to play Foosball, another to go to the bathroom (which tends to be what he does to take a break and find somewhere quiet). Once he came and bought some M & M's. It was good. A few times I glanced out of my concessions room when there was no one there asking for Coke or candy or pizza. I could see his head over the group, a whole head taller, jumping with the rest of the kids, arms in the air, dancing with the beat of the music. He was having a blast. I couldn't see who he was with and it didn't really matter. He was having fun and I wasn't stressed. Progress.

On the way home I asked him who he was dancing with, to which he replied Emma (who I know and love) and "my new friend Nora". (not her real name) I hadn't heard this one before. I was curious, as mom's tend to be, so I emailed my friend to ask if she knew who this girl was. She did, and assured me of her sweetness. It made me happy to think that he bonded with someone new while rocking out on the dance floor. Monday he came home from school and as we were talking about his day he was reaching into his pocket. I asked him what he had, since he rarely has anything in his pocket. He pulled out a small little card and said "My new friend Nora gave me a Valentine with a sweet treat attached". Yup, the small little Sponge Bob Valentine had an Air Head attached. He seemed pleased. Being an 8th graders they don't all exchange, so I hadn't even thought about it. It can be hard to read his feelings in these situations. I believe he was happy to receive it and be thought of, but he tossed it on the table, where it still sits. I have brought up a few times how nice it was for her to think of him and give him a Valentine. He agrees. But that is as far as it goes. But still, it's progress.

Today he had swimming. His Tuesday girl wasn't there when we arrived. Unusual, but it is only week 3 with her. We waited in the lobby while Zachary bounded up the stairs to the balcony where we watch and he eats his snacks and plays with his I Touch. Daniel looked at me with some concern and asked where she was. To which I replied with a big smile that she would be there. While in my head I was screaming HURRY UP, because I know we only have a few minute window before he starts to stress. Swimming is very important. Any time lost in the pool, causes more stress. So we waited. He asked me again. He told me he was "getting worried about her". I assured him she was fine, just not there. He asked me again. I suggested he ask the Professor if he knew where she was. (Ha! getting him to perseverate on someone else!) But also I was trying to get him to problem solve and make sure she hadn't called in sick. The Prof had no answer. Daniel decided he'd "go wait at the door". THIS was new? I let him.

Other coaches were coming in. I could hear him quietly saying "she'll come", and "she'll be here", hoping in my head that it was true. Although I was losing faith. Quickly. I could see him starting to deteriorate. Nothing too obvious, only obvious to me. The Prof. went to the locker room to set up a back up coach. He came back and said, "give it two minutes and we'll have him swim with the T.A.". I sort of knew that it would be two minutes too long. But I kept quiet. I'm not sure why. A few years ago I would have stepped in and solved it all. At Daniel's age of 14, I know that doesn't always help him. So I smiled and tried to reassure him, and waited.

The T.A. came out and introduced himself to Daniel. Daniel politely shook his hand and replied (sometimes these rote responses are helpful) then Mr. T.A. said, "we get to swim together today". Six simple words. But this slow climb to the top of the cliff sent Daniel over the edge. He started yelling. And jumping. And flailing his arms. And stomping his feet. Did I mention yelling? It is quite a site to see a 205# 5'10" "boy" doing that in the lobby of Jenison Fieldhouse on MSU's campus. I smiled.

I smile because my facial expression is the only thing he can see in a fit, so if I'm not upset, it throws him off. I think it may make other people think I'm a lunatic. Or that I'm brave. Either way, it is something I've trained myself to do, despite what I feel like inside. He fell to his knees. Mr. T.A. said they'd have a great swim. Daniel said through his tears, "I WON'T swim with you! Only Tuesday girl!!" (he said her name, but you see what I'm doing). WOW. That's new. (they sometimes surprise us). This time it wasn't about the swimming. It was about swimming with HER. Interesting. This also proved to be a more difficult situation to get out of. I smiled and assured him, he'd have a good swim (yeah right! I'm thinking DISASTER!) still smiling. "Go ahead Daniel, you can do it". He got up and (still yelling) marched into the locker room. The place I cannot go. Men only. MSU athletes abound. I. can't. go. in. there. Powerless.

So I went upstairs. Filled in my friends and waited. He came out of the locker room, changed, face extremely blotchy. Mr. T.A. came over to where Daniel was sitting. I couldn't hear him, but he seemed to be encouraging him. He gave him five, but Daniel was on the edge of the cliff. Then, as if in slow motion, I could see Mr. T.A. about to pat Daniel on the back. You know... a "way to go" back slap. I felt like I was in the Matrix. It all felt slow motion. I stood up and started yelling, "don't touch him! don't touch him, DON'T. TOUCH. HIM" then smack. On the back. Zachary and I recoiled waiting for the back lash. Daniel's head turned with a jerk, as if to take a giant bite out of his arm as it lay on his back. But he stopped (just) short. Zachary said, "Oh my God I thought he was going to bite him". To which I replied, "He was. But he didn't." Note to those working with kids with autism, WHEN A CHILD WITH AUTISM IS AT THE EDGE OF THE CLIFF... DON'T TOUCH THEM!!!! Is that clear enough?

Then something amazing happened. Tuesday girl walked into the pool area. With a huge smile plastered on her face. (Good girl). She helped him with his goggles (and he got REALLY in her face) a warning. His way of saying, "Tuesday girl I'm PISSED". Then they jumped in. And did he swim? Yes he did. He swam harder and faster than I've EVER seen before. He did new kicks with the kick board. He dove for rings in the 10 ft (which he had refused to do with her until this week). As if he was proving how great he was. It was incredible. Then once he looked up at me and waved. I waved back and he yelled, "MOM, I'M HAPPY AGAIN!" Which is what he always says when he is totally over it. "ME TOO" I yelled back.

After, in that same lobby of Jenison Fieldhouse, where an hour before he was on the ground yelling, Tuesday girl asked how our Valentine's was, and he told her about his Valentine from Nora. To which she said, "I got one from my parents". In a dejected sort of way. Maybe next year Tuesday girl. We said our good byes, and as she was walking away Daniel yelled out, "next week, BE ON TIME". I love that kid.

Keeping Connected=Overcoming Distress?

2011-02-09T11:07:00.000-05:00

Sometimes it's the little things. I was talking with a friend the other night and she said her daughter, who has babysat for us, mentioned how easy Daniel is compared to some other kids. I take that as a compliment for sure! What people do not realize, and never will, is the effort that goes into that. What they also don't realize is all of the planning and work and encouragement it takes for a seemingly "normal" day to look normal. What it takes for it to be a day without Daniel biting his hand so hard he leaves bite marks that stay for a day, or that he doesn't pound his head with his own fist. How much we have to set up a situation for him to be successful. The down side is that then they think I over worry. I know I don't. Only Todd and I truly know how much it takes to get Daniel prepared for something. We are able to leave him with other care givers because we know he is comfortable in that routine. Preparation can be as simple as a quick social story, or as complex as years of working him into a situation. My Aspie from Maine blogger talks about it beautifully in her most recent post.

Many of you know about Daniel's fear of the "evil Belle Tire mascot". It has paralyzed him from going to restaurants or being anywhere that has TVs playing. He lives in constant fear that this mascot will appear on the TV and send him into a panic. We still don't know the back story of that fear, we just know it exists and it plays a huge part in where we can go as a family. I have written about it a lot in my blog over the past few years. In fact one of my followers is from Belle Tire. They have even written me apologizing for the fear it causes Daniel. I appreciate the sentiment, I just wish it helped Daniel in some way.

Last week I made a trip to the Detroit area (home of Belle Tire!) to celebrate my cousins 40th birthday. While I was gone Todd took the boys out to dinner. Somehow he got Daniel to go to a new place. According to Todd he didn't really DO anything, he just gave him a choice and Daniel chose it. This is why you never give up trying to make changes, because just when you think you know the answer. They surprise you!

Just to see if it was a fluke, we went there, all four of us, last night. After Daniel's Tuesday swimming we usually all meet up at a local cony island "Sparty's". Daniel loves Sparty's and I do too. But I'm a little burned out on it to be honest. I love how they treat Daniel there. The cook sees us walk in and immediately puts Daniel's burger on the grill. He knows what Daniel will order and he starts it immediately. They also still allow him to order with the waitress, even though they know what he'll say. It's good practice for him, and they seem to love his routine and good nature he brings in every week. But Sparty's may be missing us. Last night we went to another local restaurant. It's called Crunchy's. It's a tiny little "dive" (which I say as a compliment and with love). Todd and I spent MANY hours in this place before kids. It is also a bar, but has a pretty good menu and some of the best burgers in town.

Why have we not been there before? Because there are TVs everywhere! And I mean everywhere. For such a tiny place there is nowhere in the entire place that you can't view a television. This is because it is a college establishment and they want the crowds who go to watch college sports. Todd and I have known each of the owners of this place. Why the change? Why did Daniel decide it's OK? Well, I think because Todd told him 'it's safe' and he trusts him. Over the years he is more calmly learning to accept when we tell him something is safe. We stay connected to him and give him encouragement to help overcome his fear. Tied into overcoming a fear is of course a reward. The reward here is that Crunchy's has a PINBALL MACHINE. Daniel loves pinball. So the fact that after his order is placed he can play pinball is a big deal. Zachary is thrilled with Crunchy's, he loves the burgers (he has good taste) and Todd and I are happy to be back at a place that we have always loved.

So last night after we told our waiter what we wanted for dinner, I pulled two dollar bills out of my purse, one for each boy. They slid out of the graffiti covered booth that the local college students have "decorated", each with a dollar in hand, in search of the change machine. Todd and I sat back as the quarters dropped into the pinball machine and he looked at me and said "this almost feels like a normal dinner out". We were both relaxed and so were the boys. I could tell Daniel had no anxiety despite feeling under the weather. To those around us, they would probably not think twice about it. They might think it's easy for us to go out for a burger and fries. They would of course be wrong. It has taken years and years for that to happen. He was 3 the first time he freaked out and refused to go to a restaurant because of TVs. He is 14. So when people think Daniel is easy to be around, I am flattered. Because no matter what it looks like, if we weren't constantly working with him, he'd never go somewhere like this. Our progress may be slow, but it is progress none the less. We are giving him the tools to manage in the world and the best part is he's taking them, when he is able to.

Aspie from Maine compares her story of riding a bus to a quote about floor time "If we can keep Ty engaged with us, it means that he is harnessing and organizing his energies in order to interact,” ..... “By keeping him connected, we won’t let him be kidnapped by random fragmented thoughts. If you aren’t engaged with other people, then you are completely at the mercy of your own regulatory system. Think about a situation where you were overcome with distress and how being able to tell someone helped you avoid becoming uncontrollably distraught.” (Melissa Fay Greene, New York Times, 17 October 2008). I love that. It amazes me that I came onto my blog today to write about going to this restaurant and Daniel keeping engaged and calm only to read this post. They are really both about the same thing. And I get it. I know how hard it was for Aspie to do what she did. I've observed it with Daniel for 11 years. Hurray for staying connected!

The Wahl Custom Shave System

2011-01-25T09:30:00.000-05:00

My husband and I continue to say "he has a beard, he must be really smart" and start snickering, taken from http://sneathenfamily.blogspot.com/2011/01/funny-friday.html this video. The ridiculousness of all of it just strikes a chord with us. Obviously, the fact that someone has a beard, does not make them smarter than you. In the video, if you haven't seen it, the Special Ed director is telling a parent their school psychologist is smarter than her because he has a PHd. When the mom says that she also has a PHd he follows with "but he has a beard." Tt is also funny (to us) because beards have long been a topic of conversation in our house. I am not sure why, but Daniel loves beards. In the same way that he yells out "look a little yellow car" or "look a red car" or "look a motor home" or "look a (insert emergency vehicle here)" he yells out "look that guy has a beard!" The obvious difference between all of these things is that a motor home doesn't turn and look at you with the expression of "yeah, so what?" on it's face. And if the guy has a really loooong beard. Forget about it! It's his FAVORITE. He gets so excited he can barely contain himself. You would think that ZZ Top would be his favorite band, but I haven't introduced that group to him, yet.

Although I can hear Daniel now, walking around singing "Sharp Dressed Man" whenever he is feeling particularly handsome...

Yes, Daniel loves a beard. When Todd has missed a morning shave, Daniel has loved to rub his hands on the stubble and talk about his whiskers. I wish I knew what the draw was, but I do not. Come to think of it, having hair just growing out of your face might just seem silly enough to draw his attention. Why does that happen? Why do some people have it and some don't? All possible questions going through his mind.

With conversations on beards he is SURE to start scripting about "Wahl's beard and mustache trimmers". He knows entire ads about these things. Now THAT, I know where that comes from. So I'll digress for a moment. Back when he was about three years old and things were rapidly falling apart in our lives, haircuts became a huge huge problem. Of course Daniel has always been a kid with the thickest, fullest head of hair on the planet. At 6 months old he lost all that baby fuzz, it just fell out one day. I swear to you that weeks later he had a full head of hair. This caused us to start getting haircuts by his first birthday. At first it wasn't a problem. He'd go and sit in the car at the kid hair salon that had video's over head playing Barney. He'd get his sucker and be a happy kid. Then, as with everything else, one day it just changed. He wouldn't go. He was scared to death, he'd go into an absolute meltdown kicking and screaming, fight or flight. I had no idea what to do with him. After numerous tries from both my husband and I and several instances of slinking with a screaming kid unsuccessfully out of the kid salon, we gave up. I went and bought a clipper set. Did this solve my problem? NO. But it did save us public humiliation and we shaved him at home. Don't get me wrong, it wasn't necessarily us demanding he have short hair. Not only did he hate haircuts, but he hated having long hair. This is what you'd call a vicious circle of hell. At the time we didn't understand that his sensory system was out of control, that the clippers probably DID actually hurt. We didn't know he had autism and what that meant. So, and this pains me to say, we held him down and cut his hair with clippers. He would scream and fight and it was HORRIBLE and exhausting.

Along with those clippers I purchased, came an instructional video. I don't remember the details on how it started, but he started watching this video and of course, to this day, he remembers every word of it. It was a rather old video and he still starts quoting about "the flat top" or the "fade" haircuts. All of the possibilities with the "Wahl custom shave system!" He scripts on and on and always ends with "Wahl makes it easy". He says it every time we go to get his haircut or mention that he needs one. We are actually going today after school. I am happy to say that he now goes to my (wonderful!) stylist and successfully gets a very nice haircut! It DOES get easier!

So one day he saw a commercial for the beard and mustache trimmer. Well, that was IT. Since then he says that someday he WILL have a beard AND get to use the Wahl beard and mustache trimmer. Could anything possibly be better than that!? I have heard it for years! This weekend, I was sitting next to him at Zachary's basketball game. I looked over at him, in profile and tried to brush something off of his chin. I gasped. Really, I gasped! Because I realized what I was brushing away was ATTACHED. In fact there was more than one. There were MANY long whiskers on his chin. I could see a shadow over his lip. He is growing facial hair. He asked me in a very annoyed way what was wrong when I looked so shocked. I told him he had whiskers on his chin. To which he simply said "I'm getting old. Now I can get a Wahl beard and mustache trimmer!" He got a very self satisfied smirk on his face and said, "I want a beard". At least he'll be smart.

It's Not You, It's Me

2011-01-17T23:04:00.000-05:00

I was having a "conversation" with my Aunt yesterday. That is in quotes because it was in our usual way that we converse, through email. I had updated my Facebook status the night before that I was at the middle school with Daniel. She was inquiring about why we were there on a Friday night (especially before a long weekend).  The answer was it was a middle school "Activity Night".

Activity Night consists of several things. First and foremost is the DJ in the large open lunch room. Complete with flashing lights and large speakers. This is the center of the evening. The lunchroom has a lot of windows to the hallway with separate doorways, which allows a good set up for having other games in the hallway. They have Foosball, ping pong and cornhole. I linked cornhole so those of you who do not live smack dab in the middle of a college town and experience tailgating 8 weekends a year can look it up and not wonder what they are making available for these teens!   They also have the gym open for basketball, although I have never made it to the gym because Daniel goes for the dancing.

Yes, that's right. My sensory sensitive, autistic son, prefers to hangout in the lunch room with the LOUD music, the flashing lights and masses of teens jumping to the beat of Katy Perry. I say jumping because there seems to be a lot more of these large groups of kids jumping in unison than actual "dancing". Not that I'm expecting waltzes or anything, but I don't seem to remember groups of jumping. I'm getting old. He has been to all but one activity night since he started at the middle school last year. (ours is a 7th & 8th grade school).

Last year I was a volunteer at all of them, because I knew the mom who was in charge of gathering the saintly mothers who gave up a Friday evening to stand guard around the halls so children can't steal off to other parts of the building or to watch the dance floor and gym to make sure everyone is doing what they should be, or even volunteering to sell pizza, pop and candy to the always hungry teenagers. I usually took one of the positions of the dance floor since that is where Daniel prefers to be. It also allowed me to move around and keep my eyes on him. Although this year, I do not know the person in charge of volunteers and she seems to be tapping into her group of friends to work the evening, since I know not one of the adults on site.   I have been doing a lot of reflection about how these nights make me feel. Frankly, it's not all that pretty. But I am nothing if not honest, so here it goes.

I spent that whole day of Activity Night, griping, snapping and having a huge knot in my stomach. In short, I'm on the brink of a panic attack. I actually do not understand this at all. I don't know why I do this to myself and what I want to do is say "NO you are staying home with me in the safety of our house". But safe from what? I'm not sure I really know.

Maybe it has something to do with him growing up, but I don't really think that's it. Maybe a very very small part of it, but not much. I sometimes say I want to keep my eyes on him not because of what he will do, but to protect him from being teased. I'm not sure why I'm afraid of that, because we have been really really lucky. I have had no reports of him being teased since second grade and that was one incident on the playground. Those kids were all taken into the Principal's office and talked to. I don't know what was said, but that principal said she was confident it would never ever happen again. And she was right (oh to be a fly on THAT wall) We have built up a large and very faithful group of kids around him. So far it's worked. Maybe it is the unknown. There are a lot of kids in the school that fed from other schools. Kids he hasn't been with since 1st grade. But I don't think that's it either. Again, maybe a very very small part.

Will he get overwhelmed with the stimulation? That has never happened in this scenario. I think we can safely say that after 8 activity nights it is not going to happen. He leaves the room and goes into the hallway when he needs it quiet.

Is it that he has ZERO understanding of money? When he wants to buy a snack he doesn't know how much to give or how much he should get back. He might walk away without his change. He might cut in the line and cause a problem. Also never happened, but I do usually coach him before he wants a snack.

Is it that he doesn't always know when he's "done"? He won't know when to say when and call me if I wasn't there hovering like a helicopter mom? Maybe.

I watched some of his "friends" go out of their way to say hi to Daniel and he very enthusiastically greeted them in return. It pains me that he can't sit and hang out with them and have a conversation. He just can't do that yet. He'll end up quoting Elmo and Barney and Sesame Street. That makes my stomach hurt for sure. It's hard to watch. But it doesn't seem to bother anyone but me. Daniel seems perfectly happy with the interaction he receives.

So what is it? What is the problem? Well I finally decided that the only problem is ME. It is totally MY issue and I need to get over myself. I need to stop the panic attack and let it play out. Actually I DO do that. I keep all of the turmoil going on inside of myself. The only way you'd know is if I snap at you because I am at the end of my rope. So that's what I do. I suck it up and go. This time since I wasn't working I brought a book. I sat in the corner and read in the dark room. Sometimes Daniel would come sit by me. I realize this doesn't look "normal" but honestly, not much about his situation is "normal". The kids are used to me being around. I thought the book would be a buffer so I'm not staring at what everyone is doing. I did receive two comments from adults who wondered how I could a.) see in the dark and b). concentrate among the banging music. Neither was a problem. Like Daniel, when I am totally overwhelmed and in sensory overload I HAVE to block everything out around me. It was actually the most focused I've been reading in a long time!

Near the end of the night, Daniel looked tired and he was sitting by me basically waiting for the clock to read 8:30. A girl from his class came over with some pizza. She set it on the table, then said "Daniel, do you want to dance with me?" He didn't hear her (because he is blocking everything out too!) so I repeated it to him. I saw his face change from exhaustion to excitement. He SCRAMBLED up to his feet and yelled "YES". Following her out to the dance floor. I looked over the top of my book but could only see the top of Daniel's head over the crowd. I couldn't see them dancing together. I restrained myself from running out there and taking a picture on my phone (I would never do that, but I admit the thought ran through my head!) I left them alone and went back to my book. It was only then that I realized that the knot that had been in my stomach all day was gone. I silently patted myself on the back for overcoming my own fears (yet again). That I just let Daniel be Daniel and let him have the experience. Maybe someday soon, won't even go in and just drop him off. Maybe. Someday. One step at a time please.

Funny Friday

2011-01-14T08:06:00.000-05:00

I was chatting with a colleague yesterday about work and remembered this video that someone had posted on Facebook over the holidays. My husband and I watched it over and over laughing hysterically! Unfortunately, the reason it is so funny is because it is so true. I'm sure most of you can relate to it.

At the last follow up visit with Daniel's psychiatrist I ran in the door few minutes late. I was at a work function and Todd and Daniel had met me there and were already sitting in the Dr's office. When I plopped down in the chair out of breath from running into the building and my anxiety at being late. I finally gathered myself and looked up at the Dr. I had seen him many times before but this time all I could think was "he has a beard, he is very smart" and try not to giggle the whole time.

I hope you all find the humor in it as I do. It is also good to know that it is "almost summer". . .

Let it Snow?

2011-01-12T10:36:00.000-05:00

It's January in Michigan. The snow has been around for a while now and is likely to be here for a few more months. Every winter the same issue comes up. Daniel eating snow. Ok, I KNOW, I know, "all kids eat snow". True. Most of the time I really don't care. I learned over the years to look away and pretend I don't notice. Then when some parent or child says "Daniel's eating snow!" I will pretend that this is a surprise to me and ask him to stop. He generally looks at me with confusion, because, I always know he's eating it and only sometimes tell him to stop. No wonder our kids don't understand us!

It isn't so bad after a fresh few inches has covered our yard and he scoops it up to eat it out of his glove covered hand. But despite years of rule making about eating snow he still seems to defy them whenever possible. This is when I don't like him to eat snow : 1. by a road or sidewalk that most likely had salt or Lord knows what other chemical put down to melt the ice, 2. the infamous "yellow snow" all our mothers warned us about, and 3. that disgusting snow that has been there and melted down and is turning grey from mud and most likely had squirrels, raccoons and rabbits running around on it. Occasionally Daniel asks to "go outside" in these months to "walk around in the back yard". This is code for "I'm going out there to eat all of the snow I can in the next 10 minutes." He loves that coldness in his mouth and I can only guess that he gets some sort of sensory calming from it. That is why I say "ok have fun!" and turn my head the other way while he goes outside.

He also opens our sliding glass door and scoops snow up and eats it, that way he doesn't have to don his winter wardrobe for a quick fix. I was going to take a picture of the finger prints lined up outside of our door, but we received a fresh blanket over night and the evidence is now gone. There are two things that bother me about this: 1. It is well documented that raccoons walk along that part of our deck, right next to our sliding glass door. There are many times in the winter that we have been sitting there eating our dinner only to have a big raccoon face peer in wondering what's on the menu. This is always very surprising and never fails to freak me out. City raccoons are very bold. 2. Our deck gets so much direct sunlight in the summer it is in a constant state of peeling (it has a sort of paint/stain mix on it). So I worry that he will be getting that mixed in with the snow....

This all leads me to one of Daniels Christmas gifts. Hamilton Beach 68050 Icy Treats Ice Shaver, White.

That's right, we bought him a snow cone maker. I bought it on our December snow day from school, when I was sitting here panicking that I had hardly bought any presents I went online and started ordering things and this was one of my finds! It is now set up in our appliance garage next to the coffee machine and toaster, ready to make snow when needed. We have discussed that he can have as much of THAT snow as he wants. The other day when I heard that tell tale sound of the door sliding open, I gently called to Daniel about eating clean snow. I was in the basement and didn't even come upstairs. A few minutes later I heard the ice machine in the refrigerator dispensing ice. Then I heard the LOUD grinding of the machine. We Todd has shown him how to use it several times and he has it figured out. Since he doesn't want any of the flavorings we bought (I knew that would be the case, but bought them for Zachary) we really don't mind how often he uses it. It has pretty much gone exactly as I had planned (I love that). It isn't perfect. He is human and it is still easier to open that door and grab a handful than to put ice in the machine and let it grind (not to mention quieter). But I think we are on the right track. He still either doesn't care or doesn't quite understand why it matters so much. But I'll keep working on that. In the mean time, this machine also has recipes for frozen margaritas......something for everyone!

Gratitude

2011-01-10T21:22:00.000-05:00

Some of you know that I have been working as a paid advocate for the last 15 months. It's been filled with some very high highs and some very low lows. I can't, of course, write about any of it here because of privacy. I recently had an article written in our United Cerebral Palsy Newsletter it is on page 2 under the "Learning the ABC's of IEP'S". They asked me for a parents name to interview and this is the result. (Names have been changed) I must say, I was very overwhelmed at the final result. It is always a good thing to hear that the work you did was appreciated and worthwhile. This was a happy ending, and one of the first families that I had ever worked with in a "job" capacity. It felt good. In fact, often when I leave meetings with parents that went well I get a RUSH of adrenaline. I like it.

Unfortunately they don't all go that well. Surprisingly, most do, but recently I have had a really really tough one. It is working with these tough circumstances that, if nothing else, make me take a look at our family and remember how darn lucky we are. I know that. But a nice reminder every so often doesn't hurt!

It was after a particularly hard meeting that I went home, slightly in shock at what I had witnessed and began reflecting on the circumstances with Daniel. What if Daniel was born to a different family? What if he didn't have parents constantly fighting for him? What if he was born to a family with no resources? What if he went to a school district that wasn't so supportive? Where would he be? If you put the exact same person into these different circumstances, what would happen? Would he be in this same situation? Would something within him persevere? These questions tend to haunt me. And during this week, it literally made my stomach hurt. Part of it was the fact that I had had the toughest meeting to date. The other part was that the day after this meeting I attended a student of the month ceremony at the middle school because Daniel was being honored. That's right. Daniel was STUDENT OF THE MONTH at his middle school. He's in eighth grade, and doing so well! I am so proud of him. What an honor! Daniel was nominated by his English teacher for always being kind to others, complimenting people (thank you speech teacher!) and always working his very hardest. Which he does. Every single day. He earned it. The best part was he was so proud of himself. (He is never lacking in that department!)

His dad and I went early to the middle school with him. They had bagels and orange juice for the families gathered in the cozy, well stocked library. There was a big crowd of parents and teachers who came in early (7:30 am) to observe. A teacher read the letter written to nominate each student. They each received a certificate from the school and one from our local senator and most importantly a gift certificate to Tasty Twist! It fills my eyes with tears just thinking about it. I was so very proud. I know how hard he works each and every day, sometimes to just get through the day. Even with all of the sensory overload and distractions, he still manages to buckle down and finish all of his homework in academic support, every day. No one is making him do that. In fact, at the open house at the beginning of the year, the teacher for that class said "they won't get all of their homework done in here", to which I could only think, "you don't know Daniel very well....yet". He will bust his butt not to have to take anything home with him. Natural consequences and his own reward system.

But with all of that pride came a sadness thinking about this other child. As I drove up to that school building I had a moment of wondering if google maps brought me to an old abandon building, only to realize, it hadn't. This was indeed the school. I'm not naive. I know what it's like out there. But it was the huge contrast of that week that made me wonder and weep. What if these children had switched places? How would it all turn out? I have had many dreams about it over the last few weeks. It is something I will never know the answer to. I can only be thankful for what we have been given and grateful that our work with Daniel (up to this point) has been successful and look forward that just maybe some of my work can help some more families out there. I can't ask for much more than that.

Keep Calm and Carry On

2011-01-03T08:56:00.000-05:00

Well, it's been since AUGUST that I posted. That seems like a long time ago. I have had some very kind souls email me asking if everything is OK. The short answer is yes. I guess I just needed a break, and I was working more hours than ever before (with children), causing me to reprioritize (is that a word?) a bit.

It isn't too surprising to know that a lot has gone on since August. Anyone with children, not yet children on the spectrum will know that every day is an adventure, not yet 4 months. So going back a bit, the summer was a little rough for Daniel. His puberty was in full swing and (we believe) this, on top of his autism was/is causing him to self injure and occasionally, coming at myself and/or my husband. It seemed to gradually increase throughout the summer. Many have asked, "was it also due to the unscheduled summertime?" Possibly. That used to be a huge problem, but at some point he always adjusted and settled in to a summer routine of parks, pools and lakes. This summer, he escalated. In about August, I'd had enough. Actually, my last post about our amazing experience with a successful tooth pulling. made me start looking at some of our choices a little closer. I am referring to the fact that Daniel has never been on any sort of medication for anxiety.

Medication is not my favorite thing, personally. If there is a laundry list of side effects that will come from whatever it is, I will be that person in the .05% who will experience it. It's just the way it is. So I try my hardest to avoid it. It's not always possible and I am not against it. I do not judge those who choose the path of medication. I think everyone should do what's best for them. I just like to try everything else, first. In our society where people want a magic pill for everything, I admittedly may have gone too far in the other direction. I am slow, but eventually I'll see the light. I believe what changed my mind was that one Valium Daniel took to go to his dental appointment. He was so relaxed. It made me see how HARD it is for him. Every day. I know that, of course. But after that I couldn't shake the feeling that I am making his life much more difficult by not looking into something to "take the edge off" and that it is possible for him to not be completely drugged out (my fear) and to just feel a bit less anxious every moment of his life.

The other thing that happened was his social skills teacher,who he'd seen for years, came to me and said some parents of other kids in his group have said to her that their kids were becoming afraid of Daniel because he was escalating so much in group. He never touched anyone, but his intensity was SO great, and sometimes he'd hit himself or the table etc. Now, I would like to argue that in JUNE I TOLD her this was an inappropriate group for him. The kids were too little. I thought that was upsetting him. He is used to being with kids his own age. She had him with this group because of his language deficits. I understand that. But it wasn't working any longer. I knew that and had talked to her about it. Several times. She asked for another chance to make it work. Then came to me saying parents were calling her etc. I didn't think it was very fair. I told her I was going to start exploring some new avenues with Dr's and would get back to her when we had it worked out. Well, it's pretty much worked out, but I'm not getting back with her yet. Frankly, I'm sort of pissed that she didn't listen to me and things escalated to where they did. And I'm mad at myself for listening to her when I knew she was wrong. So that is in a holding pattern. I think he was due for a break anyway and the money saved hasn't made me upset either.....

So we went to our pediatrician and talked about Daniel hitting himself in the head or banging it. Biting his hands HARD, and charging at us. The fact that he is now 5'10" 198, (that is today, not in August, but you get the point) wasn't helping. Zachary was scared of him. It wasn't pretty. Fast forward to being sent to a psychiatrist, I'll call Dr Q. We did the assessments, answered endless questions and filled out even longer questionnaires. You know the drill. I'll skip the details. We decided to start mild. He started with 5 mgs of Buspar once a day, at night. About 4 weeks later we added 5 more mgs in the am and a few weeks ago added 5 more in mid afternoon. As Daniel says "my pills make me less anxious". And they do. It is a pretty mild medication and it seems to be helping, A LOT. I am happy to see that he is feeling more relaxed. Some of his compulsiveness has eased up. He is doing much better. Oddly enough, none of this self injury had transferred to school. He would work SO hard he would save it up for me. A few things happened at school that he couldn't handle and it wasn't until he was alone with me that he came totally unglued. For that I am thankful. It doesn't always feel like a great thing when you are the person who it's being saved for, but it's nice to know you are the safety zone.

Now we have been instructed by the psychiatrist to write down when he hits himself or bites (which has become his preferred thing). My mother in law gave me a notebook in my stocking. This is it.

As my own little joke to myself, this is what I'm using to write down the self injury log. It isn't a bad reminder, as you are writing down what led to your child beating his head with his fist, to take a deep breath, and carry on.

So here we are. I always knew this time would come. Medication. I also knew it would probably be during puberty. He turned 14 this fall. He is the same height as I am. He is growing up. I think this is one of the best decisions we have ever made. I think I waited too long, but that is par for the course with me. I can just be thankful that we took the steps we needed to for our family, and most of all, to help Daniel feel better about himself. It's a new year. Follow your gut and do what needs to be done. I'm glad to be back in blog land. Keep Calm and Carry On!

We Did it!!

2010-08-05T10:13:00.000-05:00

The pediatrician's office didn't call me back that day. I had gone to Walgreen's in the evening after voting in the Michigan primary and dropping off the DVD "The Girl with the Dragon Tattoo" at the video store, just to "see" if miraculously the Valium was there waiting. It was not. With a sigh I decided I'd call back in the morning and start over. Instead, the nurse called ME first thing in the morning. Relieved that I wouldn't be starting over (and cursing Dr Israel for ya know, taking a VACATION! (how dare he!)) The nurse said the Dr. was concerned about drug interaction. When I assured her that Daniel was on no medication and that they weren't putting him under (HENCE ME WANTING THE VALIUM) she went back to the Dr. I know they have to be careful, but sheesh. This time she called me back to say it was being called in immediately. I kept sending mental signals of (get me TWO) one for me one for you...ha ha ha.

I wrote Daniel a simple social story the night before and left it on the computer keyboard for him to read first thing in the morning since that is where he immediately goes. I explained what would happen and how great I KNEW he'd do and like I usually end these things I told him, if he did a great job we'd go get ice cream after. Nothing works like a ~~bribe~~, I mean "reward".

I was starting to feel like who needs the Valium, he can do it! I was feeling strong and confident. I had wondered aloud the evening before to my neighbor (a PA) how Valium would affect him. She said, "I expect he'd sing a lot". hmmmm. Sounds like usual! I was also curious how the Valium would affect him. In group situations he has had very high anxiety lately. I can see the anxieties building and how hard and distressing it is for him. We have discussed that it "may" be time to explore something to ease this for him. So the wonder was strong in my head. I decided to go ahead with it. It can't hurt to take one pill and I'd hate to be in the middle of it kicking myself for NOT doing it and making it harder on him. So 40 minutes before, I gave it to him.

We were driving to the appointment. There were roads closed due to construction (thank goodness Todd told me this, nothing like getting him upset by coming to a road closed sign!) So I was driving a "different way" as Daniel says. Daniel's amazing sense of direction and memory kicked in and he was wondering where we were going. He noted this is how we went to Jennifer's house (someone he took music lessons from TWO YEARS AGO. Except he was asking me very calmly and happily? Hmmmm two cheers for Valium. Then he started singing! and singing and singing. Two points for my neighbors good call!

He charged into the office happily, singing "Hi diddily dee, an actors life for me..." which if you read this post that I linked was right before disaster struck on vacation. I literally stopped in my tracks hoping this wasn't foreshadowing. He took his two "rides" in the chair up and down. Remembering that 4 is up and some other number is down and some other number lays him back. Jenny lets him do this on his own and it's his routine. I never even remember that this routine will happen, but Daniel and Jenny do, so there you go! She starts rubbing numbing gel around the tooth and we wait. She has her finger in his mouth so he won't suck it off. And he just STAYS LIKE THAT, chatting about her vacation and his. He's just laying there. Seemingly, fairly happily. She puts more on. We wait. She is wiggling it and wiggling it. Trying to loosen it and talking to him in the kindest voice. I love her. Really, I think I'm in love :) It's such a relief to find someone who "gets it". After what felt like a long time (and still no anxiety showing) the Dr comes in. He is touching and wiggling and poking. Jenny and I are right there telling Daniel how AMAZING he is. Daniel did ask if it was "taking a long time". As Daniel describes it now, "then Dr Hartman took out the BIG PLIERS" (which is exactly what it looked like). He grabbed the tooth and started twisting and then POP out it came! Daniel said "FINALLY! At last it's gone!" I exhaled. It was bleeding, they put in gauze. There was clapping, cheering and joyfulness.

He didn't like the gauze, but didn't like the bleeding either. We took some gauze home in case it started bleeding again and went out to the car. I was a big geek and brought my camera.

with a hunk of gauze and blood Daniel says good job!!

look at my "chocolate chip on a regular cone" my favorite!!

I have a giant hole in my mouth!

And by Daniel's request, he wanted me to add this video! How cute is that? This is the only one I could find on You Tube that didn't have their own child in it or wasn't edited obscenely. These people have a messed up TV! lol. But the song and the intention are right! I'm so relieved this is done. I was exhausted after it was over. Oh, and they did give me two Valium. One in case of an emergency for mom?

Back to Life.....Back to Reality.....

2010-08-03T15:01:00.000-05:00

You know that song..."back to life, back to reality..." I'm dating myself here. But it's by Soul II Soul in the 80's. That first line keeps running over and over in my head. I am facing a rather unpleasant issue this week and it's making my head hurt. I decided to face up to it yesterday and I called the dentist for Daniel. He has been blessed (as have we) with pretty much perfect teeth. No cavities thus far (he's almost 14) and this is with not having them cleaned for YEARS. They are straight, spaced well. Nice. Thank GOD. His very last baby tooth became loose months ago. The. Last. One. We are almost there. The golden ring is in reach. We've been riding this crazy carousel ride round and round with the dentist and we are on our last circle the ring is there, we tried to grab it and the damn thing got STUCK. Literally. The darn tooth refuses to let go. The adult tooth is almost in. It's in front of the baby tooth. The baby tooth is stubborn. And it's stuck. And I'm not happy. Not one little bit.

We have worked so hard at the dentist. We have spent years. Yes YEARS, mastering the cleanings with our ever so patient and wonderful Jenny the hygienist. The dentist, Dr Hartman is a young guy, and so very very patient with Daniel. This spring we got our first complete set of X-rays! They all celebrated. He hasn't been able to do the bite ones, so we tried the full head x ray. You stand at a huge machine bite down on a guard and the machine actually circles your whole head. We have the X ray in his room. They printed it out for him. They are wonderful and know just how to handle him. He calmly does cleanings after years of practice. He gets no sedation. Never has. We chose to take the long slow road, so that someday he could just walk in and do it. We accomplished it and I'm very proud of that. I think it empowers him that he can do it without any help. He let's people put instruments in his mouth and scrape! That can't be easy! But he trusts them. They have earned that trust. But now. This tooth. GAH!!!

During the last triumphant exam they said if the tooth wasn't out by July 4th, to call and set up the extraction. Well, I waited until August 2, but who's counting. The thing will not let go. I thought I should get it done before school starts. I called on Monday and they said "you can come in at 4:00 today" and I panicked!! "I'm not ready TODAY!!!" So it is tomorrow at 2:00 pm. What am I scared of? I'll tell you. This one thing could undo years of work. He might not want to go there again. It might panic him and take him years to get back to this place we've worked so hard to get to. They cannot put him under there. I think it's because he is a minor and they are not pediatric dentists, I'm not sure. But I don't know if I'd opt for that anyway. In my opinion he might see that as much of a breach of trust as just getting it done. So today I am preparing. And I'm literally giving myself a migraine with worry. I can feel that tingling starting on the right side of my head like it does.

I just hung up with the phone from a conversation with someone at the Dentist office. As I was asking questions about what the plan is so I could prep Daniel, she said, "I totally understand, more than you know". Apparently she has a son who is now in his 20's who has autism. What a relief. I know the others would understand but she understood every word. So the plan is:

1. He will have the tooth pulled in "Jenny's room" where he normally gets his teeth cleaned. This is not procedure. That would normally happen in the "Doctor's room". It is too keep him in familiar territory (or should he be in a different room so he doesn't associate it with Jenny's room?)

2. Jenny (super hygienist) will be there. Because he trusts her and she always seems to know what he can handle and what he can't. She always says the right thing. (Or should we get a "mean hygienist" so he doesn't relate any of this to her?)

3. They can use nitrous oxide to relax him (or will he feel claustrophobic with that on?)

4. They will put on a topical numbing whatever you call it (or will the taste and smell make him crazy?)

This is all me arguing with myself. Trying to decide what is right for Daniel. I argue and argue with myself. This is what I do. Until I finally have to just DECIDE. There is no way to know what is correct, I just have to go with my gut based on past experiences.

Talking to the office I said do not even think about a shot. Don't even mention the WORD. He is not scared of anything more in this world than a shot. That will totally undo him FOREVER. They said "good to know". So if it can't be done with the above we'll have to go somewhere else where he can be put under.

I then called his pediatrician to ask for a prescription for a Valium. "A" as in just one. He has done this before, but I never used it. Unfortunately, our pediatrician is on vacation this week so it has to be ran past another doctor. I called the nurses line and laid out the scenario. We have lots of friends who are doctors, so I hear about people trying to talk doctors into prescriptions for things, so the whole time I was trying to convey that I just wanted ONE to get us through this appointment. I almost said two so I could get through it too, but I thought the humor might have been lost on the nurse and then I wouldn't get anything! It's too bad our pediatrician is gone because he would do it in a second he seems to realize I'm not (too) crazy and trusts me. We have built up a great relationship even though he doesn't always agree with some of my decisions. But he does appreciate that I listen and have an intelligent conversation with him before I tell him no :) But basically he knows I'm doing my best.

So that's where I am. Waiting for the pediatrician to call me back. Preparing myself mentally. I'm going to write a social story so Daniel knows what to expect. I'm not in Charlevoix anymore. Where my biggest decisions seem to be which beach to go to or what to have for dinner. I'm here debating with myself about what will make this as successful as possible. I'm back to life. Back to reality. . . Just so you have that stuck in your head too, here is the link. http://www.youtube.com/watch?v=jLHMAFfXYNY&feature=related

Fuzzy Moon

2010-07-31T20:28:00.000-05:00

At the end of our vacation week in Charlevoix is what I like to call the "Groundhog Day" portion. Just like that movie when Bill Murray keeps reliving the same day over and over again! It is the same with the ending of Venetian. It is the same every year! The kids love it, and I'm sure you can appreciate the fact that Daniel LOVES to do the exact same thing each and every year. The Groundhog day part starts with the carnival on Thursday. The good news from that fiasco was that Zachary went back later in the day with his cousins. Daniel did go back on Friday with his dad for a while to get another chance and "finish" his carnival time. He was very excited to do this. I was not pleased that the 20 tickets they had to buy on Friday cost $5 MORE than the wrist bands on Thursday. Carnivals are expensive! OYE!

Friday is the night of the first fireworks. Yes I said first. This is being written by a girl who does not enjoy fireworks or parades. And this is all we do for two days! LOL. I try to keep my chin up, but each year, I'm finding that more difficult to do! I try to be a big girl, I know that it terms of problems, this isn't a very big one! Friday night they are shot off over Lake Charlevoix. That was a very very warm evening for northern Michigan and we were able to bring boys swim suits to the beach. They swam until about 9:00 pm (in Michigan it stays light until 10:00 pm in the summer), so by the time they dried, changed and got settled in, it wasn't too long until the fireworks started. Most people are surprised that Daniel loves fireworks. My only thought is that the visual sensation way outweighs the loudness of the experience. He actually does ok with loudness if he knows to expect it. It's the surprise loudness that doesn't go very well. He obviously knows that fireworks will be loud, so it's isn't a problem. But he loves to yell and cheer for the beauty of the lights exploding in the sky!!

Saturday was the parade. It starts at 11:00 am. Since this is small town Michigan, it is the same parade every year. Although this year it was a bit shorter. This was also dampened by rain. Daniel was tense during it, but had an umbrella and a chair for a front row seat (thanks to his Grandparents who bring chairs down early!) I came right at 11:00 (delaying as long as possible!) and the rain was just starting, so I was able to grab a few umbrellas. I took cover with Zachary who part way through looked at me with his big brown eyes and said "are you enjoying this?" To which I could only answer in all honesty with "not really". "Me either!" he replied. LOL. I guess he inherited my anti parade gene?

The interesting thing came later that evening. We were in the park by Round Lake again, waiting for the finale for Venetian week. They have a boat parade after dark (so 10:15) the boats are decorated with lights and props and music and parade through the water in front of the park. This, I must say is a better "parade" than the other! While we were waiting Daniel looked up at the nearly full moon. It was sort of hazy behind a cloud. He said "look the moon is kind of fuzzy". Which he often says in this circumstance. When we agreed he said. "when we were watching fireworks in Charlevoix before when the full moon was fuzzy" (I knew exactly what he was talking about because he's talked of it before. I believe it was the first experience he ever had going to fireworks) Todd asked, "yea, how old were you?" Daniel answered, "I was three". Not very shocking, but he is right. He was three years old. I remember because we were at a different beach than we usually go to, and Zachary was an infant, which puts Daniel at 3. It will never cease to amaze me the way he has information filed up there.

"fuzzy moon" over Round Lake

I can't even remember the other context, but when he brought up another vacation memory Todd asked "how old were you then?" To which Daniel answered "I was 10". And I can only say, I'm SURE he is right. Some day I hope we can figure out or at least have a better incite into how his mind works! It never ceases to amaze me!

We Can't Control the Weather....

2010-07-29T10:23:00.000-05:00

Our vacation continued with beautiful weather in Charlevoix. We spent the next several days, going to the beach, taking boat rides, grilling amazingly fresh fish, and in the evenings heading downtown to listen to music in the open band shell in the park. This is actually my favorite part of our weeks there. It has the wonderful small town feel, it's relaxing and, well, sort of perfect.

Daniel and I at the bandshell with Round Lake in the background

The boys anxiously await Thursday. Thursday is THE day for them. It is "arm band" day. The carnival comes to town during this week of Venetian festival and Thursdays you can buy an arm band for $15 and ride as much as you want ALL DAY long. It is highly anticipated, year in and year out. The carnival starts setting up earlier in the week, of course, and there are regular "checks" on their progress. Zachary and his cousins would ride down on their bikes and come back to report what rides where being put together. "They have Crazy Dance again", they "don't have Gravitron! why not?!" It's ENDLESS. As a parent I am not a fan of the carnival. It usually means a hot day, in a small area, with way too many people amongst well, a carnival....I get it though. I would have been the same way. The positive is I don't have to RIDE (most of the time) and the kids can do it together.

I have had several comments from those who have seen my pictures that they are surprised Daniel enjoys these rides. I would be interested to know from other parents if their autistic children feel the same. Daniel LOVES the spinning rides and roller coasters (as long as they don't go upside down). As soon as they start something stimulates in his brain and he chats and laughs and talks the whole time. It's the same as when he is swinging. It's fascinating.

The day started ok. It was a very cloudy day, not big white fluffy clouds, but grey fuller coverage. This is ideal for ME in that it isn't so hot hanging at the dirty carnival all day, (especially since we had a very late adult night out the night before!) but for Daniel it means one thing THREAT OF RAIN. He gets very agitated with this especially when there is something important (to him) going on. His entire body is on high alert and concerned about the rain. He talks about it and perseverates about it. all. day. long. He asks "is it going to rain?" approximately 457,000 times. Then usually answers himself with our standard parental answer, a whimsical sounding, "we can't control the weather......" . This answer started coming from us years ago when he would be crying and screaming at us to "MAKE IT STOP RAINING!" As exhausted, frustrated parents we would try to continue our good natured attitude with answers that invoke the feeling of "everythings ok", even when it clearly ISN'T. We try to let him know things will happen again, and you can get another chance. It's a tough sell to someone on the spectrum. Although Daniel handled it very well the tubing day (see previous post). That was raining all day, but you see, the difference is, he didn't know what he might be missing because he had never done it before. In terms of the carnival, he looks forward to it ALL year. He is still talking about "Arnold Amusements Inc" today. (possibly the only child who takes that away from the day).

We finally start walking down to the carnival with Daniel skipping ahead singing "Hi diddly dee, an actor's life for me".......Even if your child isn't obsessed with Pinocchio like mine, you might remember that song from the movie. If so, you remember this is when Pinocchio is merrily headed off to school. . . right before disaster strikes. ahhhh. foreshadowing. I should have seen it. But then "I can't control the weather" so what was I to do? So I've given away where this is headed. Cloud covered + high anticipation = disaster. You got it.

The four boys (Daniel, Zachary, and southern cousins Connor and Clayton) were enjoying the carnival. They were riding The Tornado:

Crazy Dance

and the classic Tilt a Whirl

And then I felt it. A rain drop. Just one or two. It was honestly barely spitting. It wasn't enough to end anything. The boys were back in line for The Tornado and the stress level was building. At least for Daniel and I. I was trying to talk him down and it seemed to be working. They got on the ride and one thing lead to another and Daniel was starting to freak out just as the ride was starting. I was yelling for him to relax as he was screaming at the other 3 boys (for basically breathing wrong) and he was pounding on the ride. I was giving my best even mom glare, imploring him to relax and enjoy the ride, begging him with my eyes to see that it was ok. He was still riding. Hoping he would magically see that the only thing ending his day was HIM. But he was gone. He'd gone over the edge. I felt hopeless. Daniel had slipped away and I couldn't get him back. Every time he came around his eyes were locked on mine. He knew it too. He'd lost control, threatened those around him and he had that look in his eye. I couldn't even hear the madness going on around me anymore, Daniel and I were locked together, which probably stopped him from hitting himself or whoever else was in reach.

When they exited the ride, Zachary was scared (he thought he was going to get punched) and embarrassed (in front of his cousins and the rest of the carnival) and the damper on the day was much more than a few rain clouds. I told Daniel he was leaving. Which only escalates him, but he couldn't handle it anymore. Todd pulled him away while Zachary sobbed in my arms. I told Zachary and the cousins that they could stay and all I got was a sad, pathetic, "we are just going to go home now". Which absolutely killed me. Daniel's meltdown had taken them all so far down that they didn't even care anymore. It broke my heart. into. a. million. pieces. Suddenly I wanted to stay at the carnival and have them enjoy it more than anyone else. But it wasn't meant to be. We all walked home. This time with no singing, no excitement. Just me fighting back my own tears for the disappointed kids. Including Daniel. Usually my posts are very upbeat and show the brighter side, but to have a bright side, usually there is a dark side looming about. Thursday we had it.

Pure Michigan

2010-07-27T09:06:00.012-05:00

We are back from 9 days in northern Michigan. We go every year, sometimes many times a year and I am always a bit surprised at the beauty. It seems to sneak up on me time and time again and take my breath away. One of my friends was making fun of the "Pure Michigan" ads on TV. But I get it. Especially in northern Michigan. It is pure and lovely. I am usually feeling a bit cranky before we head up there. I don't know if it's the packing or the driving or just negativity, but as soon as I sit down on that beach along the Lake Michigan shoreline, I am once again sucked in to it's beauty. I'm relaxing and wouldn't want to be anywhere else. Can you blame me? Look at this vision!!

I'll start our journey on the blog after we spent our first days on Lake Michigan beach. We had made plans to go to our friends lake house about 40 minutes east of us on a lake that I have heard about a lot but never been to. It is a very large inland lake (4th largest in MI) that does in fact make connections all the way out to Lake Huron. Daniel was very unsure of this day trip since we have never ever gone there before. He does not like to leave the area and perseverates about "how far" things are and becomes quite agitated. I, as usual, like to push him to show him that IT'S OK! It won't kill you AND you might even (gasp) have fun!!

We were not starting out very well, since not only were we making him leave the Charlevoix area, but it was also very dark skies, and even raining. These two things have a tendency to rock Daniel's world (more later in the week on this). There is nothing worse to him than a threatening sky. I don't know if it's the thought of plans changing, the barometer changing or a combination of both. What I do know is he's MAD. So we started this adventure with two very big strikes against us.

We arrived at our friends (fantastic!) house in the rain. We came prepared with movies, portable DVD players and lots of snacks. Everyone actually settled in quite nicely despite the rain. They were watching the radar closely looking for breaks in the weather so we could go out in the boat. The plan was to take my kids tubing for the first time ever. My thought was that Daniel would love this as he loves speed, he loves roller coasters, he loves water. It seemed to make sense. My only hesitation was that when we go out in his Grandpa's boat he does not love the spray off the water. Sometimes it's ok and sometimes it isn't. Would being on a tube in the water make the spray ok? Or would it make him really angry? Only a trial run would tell us the answer to that.

Zachary and his friend (a girl from his class) went first. This way Daniel could see how it works. Daniel immediately had to move to a different seat in the boat so he "wouldn't get sprayed". This made me nervous as he was not relaxing into the trip. Zachary was on for quite a while, his friend fell off once (which was probably a good thing for me) We took the opportunity to show Daniel it was ok if you fell off. You just climb back on!

Here are Zachary and his friend having a great time!!!

We decided it was time for our turn. We swapped places and Daniel and I were ready to go. One of the instructions was to "lean back when you start". As you can see in these pictures, he got the "lean back" part, but seemed not to understand that "when you start" was only at the beginning. He was leaning back the whole time. It doesn't take a detective for you to see by the look on his face what he thought of the experience. . .

His face and his entire being was PURE JOY. The whole time. He laughed and laughed. That laughter that is contagious, because it comes from a place of such honesty. It was contagious because I couldn't stop laughing the whole time either. There is nothing more wonderful as a parent as knowing your child is having the best time of their life and you helped them experience it! Pure Michigan. Pure Joy! Thanks for the day to our wonderful friends!!

It's Worth It

2010-07-15T09:24:00.006-05:00

I have been so lax in my blogging!! Summers tend to whirl by so quickly I find myself in September wondering what just happened. We have been spending our days with friends, at the local pool, traveling for weekends throughout the gorgeous state of Michigan and of course with Zachary's baseball. Todd was the coach this year and that has also kept us busy. Daniel is pretty good about the games, but this season we finally figured out that it is helpful for him to bring his Ipod along to the games. That way he can listen to music that he loves and not be scared by sudden cheers from the "crowd" of people. It works. The down side is it keeps him more separated from people who he normally would engage with, but at least it keeps him from getting angry.

We had our end of the year baseball party at our home on Monday. 10 families RSVP'd "yes" to it, which brought the total number of people to 40 for hamburgers and hot dogs on the grill. A number that I initially found a bit staggering! The good news for us was we had a game at 7:00 so everyone had a time they HAD to leave by. We prepped Daniel for this many times. I knew it would be crazy here, but he had his room to escape to if he needed to, which he did. He of course came out for FOOD, because he is 13 (14 this fall) and if you all have a teenage boy you know that there is no such thing as "enough" food. He is always hungry. Always. He has grown 4 inches this year and is showing no sign of stopping. The Keens (shoes) I bought him at the beginning of summer are size 13 men's. While these are expensive, I decided they served multiple functions, they can go in the water, so they are good for being on a boat, on the beach, riding a bike or walking around. They have good support, which he needs too.

Back to the party. . . at the end of the party, it got a bit hectic as everyone was trying to round up their children to get to the game. Daniel, of course, was in the middle of it all and watching it and feeling a bit overwhelmed. I wish he could know to pull himself out of these situations, but he can't quiet do it. I could see him escalating but I was also trying to be the hostess and say thanks for coming to everyone and see you at the game and keep my own ball player moving. One of the moms was being particularly "challenged" by her son, who was not listening and trying to shove as much sugar into his body as humanly possible before leaving!! :) She was talking to him in the stern mom voice, not yelling, and he was not responding. Daniel was watching all of this with the utmost fascination. She finally said to her son "look at my face and my look, what do you think it means?" (I paraphrase, but it's close) and DANIEL said, "she's feeling embarrassed of how he's acting". I completely (inappropriately) laughed out loud. But he was right! She was angry with him, but she was probably mostly embarrassed that he was not listening to her AT ALL. I looked at my friend Jodi (who is a follower here) and said "WOW, that was a major social cue he just picked up on!" I was totally impressed.

I had to apologize to the other mom for laughing, but if DANIEL can pick up exactly what she was thinking and trying to communicate, I think it's fair to say that her child knew exactly also, but was trying to ignore her. I see over and over that Daniel is very intrigued when children are ignoring their parents and it makes me cringe a bit, because I think that possibly he doesn't know that it's possible to just say no! I really don't want that to start!! I have heard him say "did he just say "no" to her?"..... to which I respond "he did, but that is not ok to do to his mother!!" I have to keep my creds as a parent!

Daniel's social group has worked a lot on facial expressions. They look at pictures of situations and interpret how a person is feeling. I guess, it is paying off. Which is again, just in time. Whenever I start thinking that I'm going to take a break from this therapy something generalizes to our life like the one that took place in my kitchen and I realize, once again, it's worth it.

An Exclamation Point!

2010-06-17T12:37:00.004-05:00

We are in the first week of summer vacation. This is always a very tough week for Daniel and I BOTH. He is transitioning to a completely different schedule (or lack thereof) and well, so am I. We'll start with me. I just went from exercising for myself almost daily with friends, to... not. I went from working and going into an office when I chose to, to... not. I went from quiet most of the day to....not. I now have to adjust to the constant chatter of Daniel and to Zachary wondering "what's next". I get sensory overloaded. I never used to know what that meant, but life with an autistic child has given me great incite to myself. I need the quiet. Lots of parents are going through the same thing I realize but don't have the label for it. It takes me a few weeks to not want to scream at everyone to stop talking. I said "want", I don't actually do it. As the non autistic person in this story, I have the strength (most of the time) to "keep it in my head".

Daniel struggles. I remember the days when it would take a good 3 weeks until he'd transition to the summer schedule. Just when I'd think I couldn't take it, he'd settle in. That time frame has shortened, but the days he struggles, he really struggles. We spent Monday and Tuesday this week with Daniel yelling for a minimum of 2 hours. Slamming doors. Just being angry. When I very very nicely gave him suggestions of things we could do together or he could do on his own. He yelled "I CAN'T TELL YOU TO SHUT UP"....well, I thought, I think you just did....

The weather was sketchy. When school went away, so did the sun. It was bordering on chilly and the sky was threatening rain. The pool was out. I have one child that you have to fight with to get him to do anything and another who spends 4 hours at a basketball camp and then wants to know what's next? Opposites. It's hard for me to balance. I always figure it out. But for some reason it always takes me a while.

Yesterday, Daniel, told me "I won't be angry today" and it was actually much much better. I don't know which came first, if he made a conscious effort to not be angry or if it was his way of telling me he was feeling a bit better. Either way. It made me happy and more importantly,he seemed to feel a less stressed.

This morning I saw a missed text from my neighbor. Her boys are Daniel's age and twins. They walked home with Daniel this year and have been pretty inclusive with Daniel. They are used to him and Daniel's constant scripting. The Sesame Street talk doesn't seem to faze them. In fact they have reported an amazement of Daniel's vast knowledge of every single character. Their mom called to tell me that the boys were having some kids over tonight to sit around the new fire pit, roast marshmallows, make s'mores and "hang out" with about 9 kids. They wanted to invite Daniel. There would be loud music, but they didn't think that would be a big deal, as they've seen him at the "activity nights" at school and at another neighbors garage dance party. He's good with it. The concern seemed to be it might be a long time for Daniel. The mom wanted to make sure Daniel was good around fire. He is. He LOVES a fire. It is very calming for him. In fact we converted our wood burning fireplace to gas this year so we could turn it on at will. He loves it.

The only other concern of the boys is that neither their mom nor myself be anywhere around them. They know I'm always lurking around in these situations. I have agreed to stay away. The only other concern is it will be a long evening, but they live across the street, I am pretty sure when he's "done" whether it's an hour or two, he will be thrilled to be included and the time will be well spent. I gave the thumbs up to mom, and she said she'd have one of the boys text Daniel an invite, since that's how everyone was invited. . . Yes you heard me. During my absence from blogging Daniel got a cell phone. The time had come. With him getting more independence I felt better that he could contact me if he needed to. I also wonder if he can connect to some of his peers this way. Let's face it a one sentence text with time to process the information has to be easier for Daniel than a face to face conversation. It's worth a try.

I went back to making my breakfast and sort of forgot about what was going on. I didn't expect a teenage boy to even be up at that hour, let alone to text Daniel quickly. As I was eating my eggs, Daniel came bursting through the door from the basement. He said very excitedly, and slightly out of breath, "I have to get dressed!!" I was somewhat confused, but noticed him clutching his cell phone in his hand. I asked him why he needed to get dressed and he just held out his phone to me. I asked if he had received a text and he said "yes". I took the phone and read it. It said, "Hey Daniel, this is _________ and I was wondering if you would like to come over at 7:30 for some s'mores and brownies" (they SO have Daniel figured out!)

I explained that it was at 7:30 tonight, and he was in fact, not late. He relaxed a bit and said to me "I want to go". I told him he should text him back and let him know. Daniel took his phone and typed out "I would like to come over tonight thank you" Then he looked up at me and very sweetly asked, "how do I put exclamation points on this?" I think that I melted. Right then and there. He wanted to express his excitement. I could tell he was excited, but I don't think many other people would have figured that out from how he looked. But in that one sentence, he wanted to show his enthusiasm. With an exclamation point. How. Cool. I showed him how to do it, and he sent it off. He was out on the trampoline later, while I was weeding. He said "I'm so happy I feel like dancing". His funk is gone. His anger has dissipated. With the invitation from two boys who thought to include him. They flipped his switch as we like to say. I'm sure they have no idea how much it meant to him. But for us, it was !

What the warm days bring....

2010-04-30T07:33:00.004-05:00

I have been finding it more and more difficult to find time to blog. I have things that come up and find myself "writing" in my head, but don't actually get it onto the computer. My work as an advocate has picked up, tis the season, IEP season that is. I know the feeling all too well. Spring always seems to bring up my own anxieties. It may not even be about school, but there always seems to be a combination of stresses that bring out mini panic attacks.

I love the beauty of these spring days, the warm sun finally showing itself after a long winter. But those high 60 degree days with spring flowers blooming also remind me of how much my mother loved those days. It was during these kind of spring days that we also found ourselves in the hospital with her. It was 1993, the year that she died. I remember one of the days my husband and I left the hospital for a few hours. We were driving through the beautiful neighborhood surrounding Blodgett hospital, the sunlight flickering through the trees. The wide boulevard with huge homes flanking either side. It was jarring after spending days and nights at a vigil by my mothers bedside. I already knew that she wasn't really with us anymore, but it wasn't quite "over". I was in a haze from lack of sleep, only 25 years old, and knowing that this would be last time of seeing my mom who was only 20 years older than me. I'm an only child so we had a particularly close relationship. I remember the feeling more than anything. The confusion over feeling the sunshine, the warmth, the rebirth of trees and flowers, but the loss of my mother at the same time. I said aloud, "this is her favorite kind of day" while looking out the car window. Words that I think every year and cause the heaviness in my chest. The toxic combination of loss and panic and sadness, that I often wonder if it will ever go away. It seems to be compounded by the stress of planning for another year of Daniel's school, the crazy schedule at the end of both children's school year, and the promise of summer. What I can't figure out is why I don't see it coming. What can I do to prepare myself?

I have finally thrown down the gauntlet and started exercising again. Not only have I been carrying around an extra 15 pounds, but the feelings that I carry start causing pain in stress points in my back and shoulders. I remembered back to 5 years ago and a Dr. had talked about fibromyalgia possibly beginning. He talked about exercise being a great way to combat the stress and pain. I jumped into it completely and started to feel better, physically, than I had in a long time. When I exercise I do it all or nothing, much like everything else for me. I don't have much middle ground. I can already feel some of the pain lifting from my back. I need to keep it up, but it is definitely taking away from other things, like writing that are also therapeutic for me. Today I chose to stay home from exercise and write this. I didn't have any idea what I would write about when I sat down, sometimes I'm surprised at what I start typing. The exercise needs to continue. It is a great stress reliever.

Writing this also helped me come to a conclusion about summer. Yesterday was the last day of Daniel's Kinesiology swim class. He had a wonderful coach this semester. J, I'll call him. He taught Daniel the breast stroke, they swam LAPS! It's so good for Daniel to get that physical exercise. With the extra anxieties he has, I know that we need to continue the exercise for him too. Maybe it will help him even out his system also. But we all know how difficult it is to get our kids to do this sort of physical exertion. I'm thankful that swimming is a way for Daniel to do this. After swimming yesterday, J, offered to continue to work with Daniel through the summer, either swimming or LIFTING WEIGHTS! My first word was "interesting". He thinks it would be really beneficial for Daniel. His body is so huge and strong, but he could use more toning. I can see how it would help his swimming and possibly help him get more in touch with his body. If anyone could do it, it would be J. They really bonded. After writing this I decided that I'm definitely going to take him up on his offer. I was explaining to Todd and Zachary last night what J's idea was. Zachary looked at me and said, "that's what we need, Daniel to be STRONGER, if he hit me he'd kill me". He was joking, sort of. He doesn't hit Zachary but he will scare him and be aggressive. Zachary noted that Daniel hit his own leg in the car yesterday so hard he yelled out "OUCH!!" afterward. What would happen? Would the added strength be a positive or a negative? Would it help his channel some of his own discomfort and anxiety or make him even stronger and less able to judge his own strength? As usual, I won't know until I do it. That's the way it is with everyone, isn't it?

I can only look forward to summer, hope our plans for next year work out, that Zachary's changing schools next year will be all that he hopes it will be. That the transition into summer will slowly take away the heaviness in my chest. That the spring rebirth continues to bring a new year of hope.

It's the Little Things

2010-04-16T10:41:00.005-05:00

Thursdays tend to be hectic for us, schedule wise. Yesterday didn't change any of that. But at the end of the day I had one of those moments that makes you remember just how far you have come. It astounded me.

Our usual schedule is this: Before my first stop I pack up two swimming bags, one for each boy, complete with towel, suit and goggles. I make a snack for each of them and bring a drink. Pile it all into the car and go pickup Daniel in my car at his bus stop. Once I have him, I drive to Zachary's school. Then we drive to MSU to Jenison Fieldhouse for Daniel's swimming. Sometimes my husband picks up Zachary part way through Daniel's swim or sometimes I leave mid swim drop Zachary off at a different location and rush back to get Daniel before he finishes. Then when all is said and done we go to dinner. It is a carefully choreographed dance that needs precision timing to pull off. But it works for us.

I was tied up at the post office, literally. I could not get out of the parking lot. (Happy tax day!) I admit this is my own fault by waiting until this time to put my state taxes in the mail, but it is what it is. I was panicking thinking I wouldn't get to the bus stop on time. I barely made it. Daniel got in my car, I asked how his day went and he said very calmly and matter of factly, "I was a little stressed in computers today."

me- "Oh, I'm sorry, what made you stressed?"

D- "something disappeared from my screen" (still calm and not reliving it before my eyes like used to happen. He'd be back in the moment and be reliving it. I believe it has to do with how his memory works.

me- "I know how frustrating that is, I get upset when that happens too."

And that was it. We drove to Z's school and got in "the line". At some point Daniel usually starts escalating and worrying that he'll be "late for swimming". We do this EVERY week and every week he worries and frets and stresses about how many cars are in line. He began again and I reminded him (as always) that we don't have to be to Jenison until 4:00 and we have at LEAST 20 minutes. I remind him to look at the clock. But this week, he calmed down.

Next phase, we arrived at Jenison fieldhouse and waited for his MSU student to arrive. And we waited. And waited. I asked the professor if he had heard from Daniel's guy, he had not. Daniel was pretty patient. He looked at me and said, "is Josh sick?" Which was a great question. I said I wasn't sure and how about he go change and wait on the bench in the pool area. (this has never happened before) We went to the pool. I was chatting with my friend and looked down (I'm in a balcony) and Daniel was quietly sitting on the bench, by himself, holding his goggles, waiting. It was 4:15 by this time. No Josh. I yelled down to D and told him he was doing a great job waiting. Then I yelled to the teaching assistant and suggested that maybe???!?! he wasn't coming and to get Daniel in the pool with someone else. He did, although it took 5 more minutes.

It crossed my mind that many things had interrupted his schedule and now he'd be swimming with a different coach which would mean a different routine in the pool. I tucked that thought away and resumed my chatting and waited for the anxious yells to come. But they never did. Not once.

After swimming he came out dressed and said, "why didn't dad pick up Zachary?" who was standing next to me. I said Zachary was really tired and didn't feel great and was skipping swimming today. This alone, in the past, would have sent him through the roof. He would have cried and been "worried" and said he missed it etc etc. Nothing. We were walking to the car and he said, "now we are going to Spartys" a cony place Daniel loves, and I said, "nope we are going to Olgas that's where I told dad we'd meet him". Nothing. Just an "ok".

It was only then that I thought of the huge number of things that went "wrong" on that day. Previously any one of those changes would have set him off to the point that he would have had a terrible night and never recovered from it. But he endured all of them, in stride. These are the little things that make it so difficult for families with autism. Life happens. But when it does it can be so upsetting for our kids that they can't take it. He was having a good day, but I realized in that moment how far we have come. I was thankful that all of the work we've put into helping him deal with his days has paid off. We aren't done, but it was so satisfying to know that HE felt more relaxed and able to deal with the changes. The daily things we say to him to help him through the stress are working. He's maturing, he's dealing. It made for a pleasant day. It felt....normal. It was nice to flash back and see how far we had come, once again. It made me smile.

Different not Less

2010-04-11T09:07:00.004-05:00

Those are the words that rang throughout the new Temple Grandin movie currently playing on HBO. It is On Demand, if you have it, until May I believe. I will watch it again and again. I will show it to my 10 year old. Maybe even to Daniel if I can get him to watch part of it. That would be interesting. I have had the pleasure of meeting Temple Grandin once and watching her speak twice. For those of you who read me who do not have children on the spectrum I'll briefly explain, but I recommend you somehow watch the movie. If you are near me, come over we'll watch it together. But only if you don't mind me crying at odd times. I don't think the movie is sad at all, but it continuously moved me in ways that surprised me.

Temple is a woman with autism, obviously. Not Aspergers, autism. She is in her 60's now which puts her at a time growing up when no one really knew about autism. This makes her story even more powerful. They show Temple's mother (who I have also seen speak) being told it was mom's fault that her 4 year old wasn't speaking and wasn't bonding to other children. She is a very strong and smart woman but the fact that they all rose above this still amazes me. Temple now tours the world talking about her autism and because of her autism can tell you things about her childhood and the way her mind works that is FASCINATING. I have always been interested in her because she is so similar to Daniel. There are certainly areas that are different, but through the movie there were times when Todd and I would both start chuckling at the smallest thing because it was DANIEL. Or I would say what Temple would do next because I knew what Daniel would do. I can't wait to watch it again and again.

Todd and I both met Temple years ago. I'll guess 6 or 7 years ago. She was speaking in Ann Arbor and we drove over to see Temple in the morning and her mother in the afternoon. It was an amazing combination. The child's perspective in the am, the mother in the pm. We were sitting at a large round table as you are at most of these events. We were in the front. After Temple finished it was lunch time and she sat at our table since there was room available. Besides Todd and I everyone else at our table were "professionals". They all immediately started asking her questions. All at once. I remember thinking, what is wrong with you people? You know she has autism right? I use the sentence "I have met her" loosely, because she was sitting next to Todd and when all of the questions started she turned toward him to block out the clutter bombarding her and said, "what do you do for a living?" He answered, "I'm an engineer." Then everyone else was gone for her at that lunch. She talked to Todd the whole time. While everyone else made the mistake of overwhelming her sensory system, Todd was a life line. He was an engineer, she could talk about that. And they did. It makes me smile just thinking about it. No one else was very happy, but really, it was there fault!

Back to the movie. I thought Claire Danes did a wonderful job portraying Temple. The few times I've seen her, her accent, her movements were all there. When Temple would come across something that was upsetting to her or would set her off (seemingly for "no reason" to an outsider), they would flash to the pictures she was seeing in her mind as a way of explanation. It was really well done.

Temple has her Ph.d in Animal Science. She has designed over half of the systems used for cattle in slaughter houses in North America. While this seems an unlikely topic for a movie, I found it very interesting. She loves animals and is completely in tune to them, which they show throughout the movie. It is partially that love that inspires her find a more humane way for them to be slaughtered. Her rationale is they are here, they will be food and we should respect them for it. She does yet she also has the disconnect of the cattles final outcome. Her respect of animals reminds me so much of Daniel. There is a scene where she walks into a horse stall, the horse is going crazy, rearing up and very dangerous. Temple walks up to it and calms it down. She walks into cattle and sees how they move. She lays in the middle of the cattle looking toward the sky like Daniel does laying on the trampoline or sidewalk staring at the sky. She brings calmness to the animals and they return the favor. I have seen Daniel do the same thing with animals. He has no fear, just calm understanding. Lucky for Temple she spent summers at her aunt's farm and this helped her tremendously. Watch the movie!

Most of all, when Temple speaks of the things her mother did for her that changed the course of her life, (not institutionalizing her as recommended, for one) my heart pulled. She knew that had her mom listened to the Dr's her world would have been totally different, but she had never expressed that to her mom. Instead she has a doctorate and helps people all over the world with her public speaking and her books. I had an experience last week talking to a mother for my job that showed me with a few changes in fate how different Daniel's life could be. I am working as an advocate and this woman's story tore me apart. I felt like her son and mine were so similar and yet the point he was at in comparison to Daniel's was very difficult for me to hear. I cried when I hung up the phone. I cried for the mom, who was at a loss of what to do, and frustrated with her school system. I cried for the son, who is being cheated from his potential. I cried for our systems that are still in place in 2010. Temple, born August 1947 (the same year as my parents) somehow overcame that, but we still have some of the same crap going on today. There are still some schools who don't know how to handle the children who are different. Different not less. The children aren't incapable. You just have to take the time to understand them. Figure out what makes them tick. People did that for Temple. Her mom, her aunt and a teacher and mentor. We have given Daniel these opportunities and he has many many people in the schools that know what he can do. It was hard for me to see the similarities and the differences. I guess that was why the movie was emotional for me. I could see the differences but also the similarities with Temple and Daniel. It gave me hope. It also tore me up. But the message that our kids are Different not less, is the most important thing to draw from it. Please watch it and give me your feedback.

Unexplainable Moment

2010-04-01T07:04:00.006-05:00

Setting: an evening in Michigan. The first day in the 70's. The kids played outside all evening. Things are winding down and Daniel is in his bedroom, on the 2nd floor playing with his things and going through his nightly ritual. Zachary is getting ready to go to his room. We are in the family room on the 1st floor. He comes to me and says he doesn't like his book he is reading. He is looking for something different. Todd suggests he look for something in Daniel's room. I was a bit hesitant. Daniel does not like books out of order in his room. In fact he knows if anything is out of place, despite the huge amount of things arranged in there. Instead I asked Zachary if he'd tell Daniel for me to get into the shower and we'd figure out something else.

Zachary goes upstairs, delivers the message and goes to his room. Daniel gathers up his things and on the way to the shower, opens the door to Zachary's room.

Daniel- "Zachary, I am taking a shower, DO NOT GO INTO MY ROOM."

Zachary runs down the stairs to me with an amazed look on his face.

Zachary- "mom, you won't believe this, I think Daniel read my mind. He has never told me to stay out of his room, it's like he KNEW that I wanted a book out of there."

I have to say, it kind of gives me chills. I can't imagine he heard the conversation, he was upstairs on the other end of the house. The vents in that area don't lead to his room. Zachary was stunned, amazed and confused....what do you think?

The Good, The Bad, and the Ugly

2010-03-23T07:51:00.004-05:00

I seem to barely be keeping my head above water. For me stress seems to come with MIGRAINES. So that is one thing I've been fighting. Migraines they make me lose entire days of time, which puts me further behind, which makes me more stressed. You see my problem here. . . So here's a little update of some good, and not so good things from the past week.

Good: Daniel's MEAP scores came in the mail. MEAP is the statewide achievement test here in Michigan that everyone takes (except for you IEP savvy people who take the MIAccess,) Daniel took the MEAP only in math this year, because we thought that would be the most appropriate test for him. Testing him is not always easy, and he gets accommodations for it, like more time, a different location etc (write those in the IEP folks!). But still he usually doesn't do well. I know that the testing doesn't always show his true levels of achievement, but the scores can be gut wrenching to see. They usually get glanced at and filed away, far away, so I don't have to see them. It's easier to go to my happy place of denial that way. But not this year! He went from a 4 (not proficient) last year to a 2 (proficient for 7th graders!) this year. This is in comparison to all 7th graders in Michigan!

Bad: In Daniel's Resource English class there has been three parapros available to assist a class with very high needs. One was just pulled from the class to be put into another class, and it was Daniel's long time parapro.

Good: I had a very good conversation with the special ed. director. This was after talking to teachers, vice principals and principals. She understands my concerns and has assured me that if Daniel starts showing frustration and falling behind (after making so much progress!) that they will reassess the situation. I have known her a long time and I feel confident this is true.

Bad: Daniel was screaming on the bus last Wednesday and hitting himself because the natives (teens) were restless and acting like caged animals. i.e. hanging out the windows, arms flailing around similar to chimps at the zoo reaching out through the bars. This, not too surprisingly, stressed Daniel out. The bus driver was trying to get the kids under control. They wouldn't listen (and refused to raise the windows?!) which made Daniel even more upset. The vice principal was called out and he had to RIDE THE BUS WITH THE KIDS. Daniel recovered part way home since the bus was SILENT (a "request" from the vice principal). I then received an email explaining the situation from the vice principal.

Good: This lead to a brain storming session about giving Daniel something to concentrate on while on the bus. If he is in noisy situations (like a sporting event his brother is participating in) it helps for him to have something else to concentrate on. Like his "DS" (Nintendo DS). When I asked him what would help him on the bus he answered "my DS" which was immediately shot down by me. I fear him losing it or kids would want to see what he is doing and hang over his shoulder. This would NOT make him happy. During my conversation with the special ed director. She immediately offered up an MP3 player for him to borrow. We loaded it with music from Fantasia and so far, he is ONE HAPPY BOY! It has worked like a charm! It is very relaxing for him and the music makes him happy. Now he can ignore the caged animals if he so desires...

Bad: A friend let me know that her daughter reported that she witnessed some kids harassing Daniel in the hall and frustrating him to the point of him getting upset.

Good: She stepped in and stood up for Daniel

Bad: They didn't listen

Good: This led to topic number 3 with the Special Ed director and she was very upset about it. It seems that is it is being taken very very seriously by the school and we are working on it. When I had dinner alone with Daniel last Thursday we had a conversation about his morning routine. (an entire conversation!) When I got to the spot where I thought the harassing was occurring I asked him if people ever bother him. His answer. "Sometimes". Which makes me think that it happens with some regularity.

Bad: While talking to the special ed director about this I was crying the ENTIRE time. In my defense, I was also in the middle of a migraine day and was not handling anything very well. It was an ugly cry too. Not a few tears, but all out crying.

Good: She was extremely kind, especially when I asked if she could please just ignore my crying and continue on with the conversation. She was very sympathetic. We have known each other for many years (long before she became our special ed. director.) I have always felt a connection to her and I think that is reciprocated. She immediately called the social worker at the middle school to get to the bottom of this issue and delivered the MP3 player to come home the same day!

I talked through this with my friend afterward. (crying again). This is the friend who's daughter stood up for Daniel to several kids. This girl has the self image and strength as a 7th grader to do what is right, for someone she cares about. Not only is she amazing, but her parents are too, for raising such a child. I am starting to sound like a broken record but I am very lucky to have them in our lives. As I was crying to her on the phone, and complaining that I can't stop crying when talking to someone like the special ed. director about an emotional issue, or in a meeting in front of people and she said something that made me pause. I'm sure I will never ever forget it . She said, "You cry the tears that he can't cry for himself and you get the job done and make it a better world for him."

Wow. What a powerful statement. I said, "that's beautiful and I'm stealing it from you". Which I am! That is honestly the most lovely thing I've ever heard anyone say. I wrote it down immediately so I'd get it right. I'm glad I did because I only remembered the "you cry the tears that he can't cry for himself part". I had completely forgotten the last half about making it a better place for him. I guess I had forgotten that part, because in terms of that, what choice do we have as parents? In my opinion, that is why we are here, and I know that I will always do that. Sometimes when we are having a hard time with Daniel, I think back to about 5 days after he was born. He was a very sick little boy and was in an incubator for several days receiving oxygen and medicine. It had been a long week, but we knew at that point he was in the clear and recovering. I was sitting in my special room at the hospital for mom's whose children are sick and still admitted after the mom's are released. They give a bed to you and you can stay in the hospital to be close to your baby. I was holding him in that room and looking into his face and I clearly remember promising him that I would be there for him always, I would be there to protect him and help him with everything, that I would do whatever necessary to help him. It was a different feeling than with my other son. It is almost like I knew that the hard part wasn't over and it was going to be a long long road with Daniel. But I have kept my promise to him from that day. I always always will, through the good, the bad and the ugly.

Spring in Michigan

2010-03-16T09:30:00.005-05:00

We can feel it. The promise of green leaves, flowers and sunshine. After a long cold winter and a very snowy February, spring is in the air. We went from very cold temperatures to the 50's everyday. Which, if you live in Michigan, sends people into a spring frenzy. Some people stopped wearing coats when it was 48 degrees! I say SOME because I do not fall into that category. I am the person who is shivering when it is 75 degrees. Nevertheless, the sun is welcomed with open arms.

Last week the warmer temperatures fell in a week that gave us two half days and one full day off of school. On Tuesday, the first half day of the week, I was trying to paint my laundry room in preparation for a delivery of a new washer and dryer (yeah me!) Only to be met with requests to get the bikes down (they are hanging upside down from the ceiling of the garage by the way, not an easy task). This then leads to "my tires need air" and "can you come on a bike ride". My painting stopped needless to say....

Daniel went on at least 5 bike rides last week. He whips around our neighborhood a MILLION miles per hour. Zachary can't keep up! And at one point when Daniel went FLYING over a rogue patch of ice Zachary reports that he was fearful of Daniel wiping out. Of course Daniel went over it without missing a beat and Zach slid and crashed only to have Daniel continue on at full tilt, with Zachary left yelling "WAIT, WAIT, WAIT!". The next time they went out I loaned Zach my Blackberry in case of any accidents. (yes, I know where that is leading....) Daniel was blissfully in heaven. I found myself thanking God for that Bike camp nearly two years ago. It totally changed our lives. Not only does Daniel get more exercise, but I think he feels ALIVE flying around the neighborhood at warp speed.

The feeling of spring continued last night after Daniel's group therapy of speech/social skills when he was feeling particularly anxious. He had worked really hard and kept all of his scripting in his head for an hour. He was upset at how difficult a game was (and the pace of others playing it). He kept it in. Then when we got into the car, he needed to get it OUT. We arrived at home and he had his usual chocolate chip cream on a regular cone (NOT SUGAR that would be unacceptable on so many levels to him) he requested to go on the trampoline for the first time of the year. In the spring it gets flooded in that part of our yard, but for the first time the ground wasn't under water. We gave him the green light.

Todd and I were watching him jump with joy (literally) on the trampoline. Flying through the air. It still calms him right down. (If you have a child with austims and you don't have a giant trampoline, I recommend you go out right now and BUY one). That anxiety was filtered through his legs and into the air instead of at a slamming bedroom door. It was exhilarating, even from the kitchen window. Then he did his next favorite thing after the jumping, he lays down and watches the clouds float overhead. What a relaxing and enjoyable feeling. To exert the frustration then lay down and watch the light clouds overhead. It relaxes me just thinking about it. That is the payoff in Michigan after a long winter. It makes us think of what is to come in the next months. The beautiful Michigan beaches, the Great Lakes, and for Daniel, laying on the trampoline at dusk and waiting for the bats to fly overhead as the sun drops below the horizon. I can hardly wait.

Conferences

2010-03-10T08:39:00.004-05:00

English Language Arts. Is it an art? Where does that come from? According to the American National Council of Teachers of English, the five strands of the Language arts are reading, writing, speaking, listening, and viewing (visual literacy). Put into perspective with a person with autism and the definition might was well read "NIGHTMARE".

I have heard the reports for years that Daniel's reading comprehension is at a 2nd grade level. His word recognition is always at least at grade level, sometimes higher. He has always been able to read the words, it's the understanding of the words that hasn't been so great. We have been focusing on Daniel's math for quite a while, he does better with one "push" at a time. The math has really clicked. He is working in a class that has a slower pace, but same content which is perfect for him. He is thriving. It is amazing. He is working independent much of the time and it is beautiful. He has A's. In PRE ALGEBRA. It is mind boggling. Now what? I say great, what about English? Will I ever be happy? There is always something to tackle. This 2nd grade comprehension really kills me. I mean how are you supposed to keep up with science when you can't understand the content of the language being thrown at you?

I have felt that he comprehends more than we know. Standard tests are, of course, not always the way to go with our kids. Daniel is in a resource English class this year. This is a new direction for him and for us. We really wanted to get him working on his comprehension to see what would happen. A lot of his academic goals are around ELA. I have been asking questions of the teachers and have been told, "he is fully participating, he is answering questions, he is "getting it"". How can that be when they are reading 7th and 8th grade books? I know he can read the words, but actually answering questions? That seems, well, unlikely. Don't get me wrong, I have confidence in his abilities, but it's going to take a while, right?

Last night I met with his case worker (who Daniel hugged upon their first meeting he loved her so much) and his English teacher along with yet another Michigan State Univ. intern. I love when the interns are at our meetings but wish I could crawl in their heads to see what they think of this crazy mom before them!? It seems that Daniel's most recent comprehension test put him at a 50% level for SEVENTH GRADE comprehension. Which I believe cute case worker said is average proficiency. 7th grade? That's the grade he's actually in! Is that possible? He has been tested other times this year and the last time it was at 6th grade. Now it's at 7th grade? She started at a 2nd grade level, he was at 90%, 3rd grade 80% + etc. It all made perfect sense, with each grade level up he went down slightly. BUT he is at a SEVENTH grade level. I have to keep repeating it to wrap my brain around it. They are using a different method of testing than they have in the past. It is more suited to him, and they think more accurate. We think that Daniel's verbal language difficulties have prevented him from showing us what he knows. This is not earth shattering, we knew that on some level. But I didn't expect that. Not at all. How incredible.

I was so happy. I am so happy. But as I think back and realize I didn't show it at all. They must think I'm an ice queen! But part of me wasn't um, well, comprehending the whole thing. His ELA teacher said, "I know you are concerned but he's doing incredibly well". She must be thinking I'm crazy since she has seen all of this growth. They ask him a question, he answers, (correctly and appropriately) I think she must be wondering what I'm concerned about. So I then explained that Daniel has been (on paper anyway) at the same reading level for freakin' ever. When he started ppi (pre primary impaired) (preschool for those with special needs) after the first day the teacher said, "can he read?" and I was all,"yeah". Completely oblivious to the fact that not every 4 year old can pick up a book and just read it. He'd been doing that for over a year at that point. I didn't know at the time that this was called Hyperlexia. The linked site defines it as a "precocious ability to read words far beyond what would be expected at an early age and/or a fascination with letters and numbers. These children have barriers with language acquisition and communication."....later it goes on to say, "Hyperlexic children follow a similar pattern of development. First words developed about 12 - 18 months, but approximately half of the children lose gained words and do not begin to regain them until after age two." It goes on to talk about how language is primarily echoalic and "chunks" and even whole conversations may be used in conversations. This is exactly what Daniel does. In fact the above all sounds exactly like they are speaking of him.

Speaking with my friend (thanks Amy!) I realize that my lack of enthusiasm regarding Daniel's excellent news, and my constant "what should we focus on next" is pretty much a self defense. I am protecting myself from celebrating because I know very easily today I could get a call that Daniel has banged his head so hard on a wall that he cut himself, or that he because so frustrated because someone did something like walk out of a room. I take my successes as I do with the frustrations, with a grain of salt and hopefully with a little tequila ;)

I am thrilled with his progress and I don't take it for granted for one second because I know there are many families who will not get this fabulous news. Because Daniel is who he is, we can continue to push him forward. He can slowly emerge from his shell. We are seeing a crack in that shell. I didn't know if I ever would. I am so proud of him. He is an amazing child.

The Conversation

2010-03-05T08:28:00.007-05:00

Scene: A cold Monday evening in Michigan. Daniel's weekly group session. His therapist was working on conversations between the boys. Daniel is quite a bit older than the other boys but his speech is much more impaired than theirs. Despite their young age (and Daniel's giant body in very small chairs) their speech helps pull him "up", in my humble opinion. The therapist sets up a conversation between Daniel and a boy I'll call Sam. The subject; Mackinac Island, Michigan. There is more about this magical place here. The therapist has helped them with canned beginnings and transitions, well for years in Daniel's case. I was listening to this over a speaker while in the waiting room, I could not see them. I also do not claim to have 100% recall (as IF!) so let's just say the "spirit" of it is correct.

Daniel- Have you ever been to Mackinac Island Sam?

Sam- Yes, I have, have you ever been there Daniel?

D- Yes

(thought bubbles over their heads)
pause
pause
pause
thinking
processing
what's next??
do I continue?
when will it be 6:30?

D- There is a Grand Hotel there. Have you ever stayed in the Grand Hotel?

(are we seeing the scripted parts? and transitions?)

S- No, I've never stayed there, have you?

D- Nah.

S- I've ridden bikes all around the island. Have you?

D- No, I rode on a carriage ride. (thought bubble- it's a LOT less work that way)

pause
pause
pause

D- Do you like the ferry?

S- What fairy, what do you mean? (this is an example of a huge problem with speech and conversations for those on the spectrum. Homophones are very confusing. I believe Sam was thinking of fairy of the Tinkerbell kind)

D- A ferry like the Arnold Transit Company. (this is seriously what he said!)

S- oooooohhhhhh.

D- Where did you sit? Do you like to sit on top?

S- Oh, I sat on top and I thought it was sort of creepy!

D- I sat on top. And I sat on the bottom, inside, when it was raining.

Then a lengthy conversation started about the seating on the ferry. By the windows, in chairs, outside, inside. I have honestly never heard such a long exchange. I never heard the therapist interrupt or interject anything. She might of been gesturing to continue, but she didn't say anything. By this time I was laughing out loud. Part of it was it the joy of hearing my oldest son, at age 13, engage in the longest conversation I've ever heard. Part of it was the autistic idiosyncrasies that were in there and were, in my opinion, adorable.

All parents "really" don't know if their child will grow up to get married, be able to hold down a job and live independently. Let's face it there are a lot of deadbeat 40 year olds out there letting mom still cook and clean for them. No one thinks that will happen to their child. But parents who's children are not special needs, do know that they can converse with their child. They know that their child will be able to appropriately express their needs. Those parents know that they will be able to talk to them about their hopes and dreams, and often take it for granted. We don't all get to do that. And when your child is particularly challenged in these areas, it's almost as you don't DARE to hope for it. You work at it, you try, you encourage. But if you hope too much, will it be more difficult if it doesn't happen? I suppose I try not to think about it. I am a "put one foot in front of the other" sort of girl. But in that dark, dank, depressing waiting room that evening, I was laughing and crying by myself. Then the therapist walked out at the end of the session to talk to me and her jaw was LITERALLY hanging open. She was shocked. And thrilled. And amazed. That is the really amazing thing about raising all kids. You never know. You really never do.

My "Hose" in Band

2010-02-26T09:15:00.005-05:00

Yesterday morning I emerged from my meeting at the middle school a very happy mom. We all know that isn't always the case, but when it is, it feels good. Really really good.

Flashing back: when we were setting up Daniel's IEP and schedule last spring I was very focused on getting him para support during lunch. We had dropped it back in about 3rd grade when he sat with "his girls" in our safe little elementary school cafeteria. He continued to be independent during this time. We had had a few minor incidents over the years, but honestly, not much more than MOST kids experience. Middle school lunch sounded like a nightmare to me. It was a new huge place and he wouldn't know half of the kids. I wanted him to have support and also thought that the person with him, could help him find appropriate people to sit with and maybe even facilitate some conversations. I got what I asked for.

What I gave up was support in band. I know. Really? you ask? I know you are thinking I was nuts. Maybe I was, but I was blinded by the lunch room, and actually I had some good reasons for giving that up. One being that his para did not go into band with him in 6th grade. She would check in, she would go get him if he needed to leave, but really, he was pretty independent. So I went along with it. What I DIDN'T take into account was that band was going from 2x's per week to 5 x's per week. The size of the class doubled and they went from 1 percussionist to 4. Had I KNOWN that I wouldn't have made that decision. IEP tip #1: this is why it is a good thing to have the general ed teacher there when a decision is being made about a class. Had I heard that, I wouldn't have agreed to it. Hind site is 20/20.

Rolling forward. A few weeks ago the last thing happened. I keep calling it "the hose". What does a hose have to do with anything? Read on. My cousin and her husband live in a cute house. It is "cozy" and they bought it as a couple with no children. They now have 2 growing boys and a dog. There isn't much room left. The tightness of the space kept building and building. One day the husband bought a hose. He couldn't find a place to put it. There was not an inch to spare, he proclaimed, "that's it! we have to move!". Is the fact that you have a hose with no home a big deal? No. But it was all of the things leading up to it and the one thing that pushes you over the edge. For me I wrote a note in "the notebook" to Daniel's para asking what music they should be practicing at homeand she sent me back a list. I had NONE of the music at home. He'd (again) been practicing the wrong songs for over a week. That music was my hose. I snapped and said "that's it" we need some help. Was the fact that we didn't have the music a huge problem? Not really, but it pushed me over the edge.

I constructed a very long email, outlining all of the issues and problems Daniel has faced this year in band. Tip #2 a calm fact based email describing all of the difficulties he has had this year. I explained the ways we have tried to overcome those difficulties and how they haven't worked. I explained the impact to not only Daniel, but his peers in the class. I explained that it is no reflection on the teacher, she has done her best, but it's too much. Lastly, I asked them to consider giving him para support in this class. Calm, cool, emotionless facts explaining the problem in detail.

I am explaining these tips because I have been working as an advocate now for almost 4 months. The mistakethat I see parents make is that when "the hose" happens they fly off the handle and make a huge deal about "the hose" when it isn't the hose at ALL. This gets you no where with the school district. They'll tell you "it's just a hose".

The school district had someone collect data, there were discussions. The Special ed director observed a class (guess what happened THAT day? Correct, best day of the year! I suggested to her yesterday that she should be there EVERY day :) I had honestly expressed my concerns that he escalates so much that he may hurt himself or go after someone else. You would think I set this up, but he did grab an adult for the first time since the beginning of 3rd grade, while we were in discussions about this, proving my point nicely. We discussed the hormones and how they are affecting him, I explained how he has gone backwards in some areas (physicality) because of it.

So yesterday morning I sat at a table with the Special Ed Director, the Principal, the Special Ed teacher who handles his case, the band teacher, and the AI specialist from the county (and an intern; I love when they get to see how a meeting SHOULD go) and little old me. My husband asked if I was intimidated. No. Not at all. It is my job now after all, but I have learned it is WAY different when it is someone else's child you are talking about. Plus, I think our district really does a great job (IF you present it right)of working through things. These four months of working as an advocate has left me a bit stunned at how some other districts operate. To be fair, it leaves me a bit stunned at how unable and inappropriate some parents are. But yesterday they genuinely understood AND they gave him support during band. So I'm giving the school props where they deserve it. In a super super tough economic climate, when money is no where to be found they chose to do what is best for the STUDENT. What a novel idea! I'm very very pleased. For now, my hose is just a hose.

Yoo hoo, Good Neighbor!

2010-02-19T11:08:00.007-05:00

This is why we practice. You have to be prepared ahead of time. I have recently discussed all of the practice with Daniel staying on his own for short spans of time, and our fear when he wouldn't answer the phone.

Wednesday the need arose to quickly leave the house. Zachary was supposed to stay at school for art club. It was the first day back after a 5 day weekend. I had reminded him several times about art club, sent him a snack for it, and still he forgot. This is not like him. He usually reminds ME of these things, but on this day, he jumped on the bus and came home. When he walked into the door I wondered allowed what the heck he was doing home and told him to get into the car, so I could turn around and bring him BACK to where he just came from. Daniel was on the computer in his post school bliss. Making him jump into the car for a frazzled ride to the elementary school would NOT have gone over well. So I grabbed the home phone, called it (so my cell was the last one on caller id) handed it to him and said I would be back in about 20 minutes. He knows the rules. Only answer if mom or dad calls, don't open the door, etc etc. He happily complied. I left.

I pulled into the school only to have my cell ring. I looked down to see my husband's name. I hit ignore. (sorry honey) I wanted to run Zach in to make sure everything was ok with art club and it didn't get cancelled or something. Then my phone rang again. Neighbor Laura. I answered in case there was a naked 13 year old running through the snow or something. There was not (thank goodness) We had a short conversation and hung up. My phone rang AGAIN from Todd. I ignored. (sorry again honey). I dropped off Zach and started to wonder if Todd had a problem or if he somehow knew this madness was happening. So I called him back. Only to have him say, "I didn't call you". It was at that moment that I realized on my cell phone under our home number it says "Todd" instead of "home". (it no longer does, I changed it right away) and my dense self didn't realize it was DANIEL trying to call me.

I then noticed the little voice mail icon on my Blackberry. I called my voice mail stuck somewhere between panic and confusion. Daniel wouldn't leave a message would he? He never has. He has only ever called me once before. If I were more technologically savvy I might be able to download the voice mail to my computer and then to here, but I am NOT. So I can only TELL you what it said, which really detracts from it, but it just said this, "I love you" (think of Barney saying I love you...that is the same way he said it, an example of scripting but using it appropriately and in context). My heart melted. How sweet is he? Calling me to show he can (again) and just telling me he loved me. I called him, I was already driving home by then. I heard him answer, and after a moment of silence he says "YOOOOOO HOOOOOOO!" in a very goofy, high pitched, sing songy way. We chatted and I told him he was doing great and that I got his I Love You message. He was very proud. I could "see" it through the phone. We hung up.

Driving down my street I saw Laura, who had called me earlier. I stopped and we chatted. I told her I was sorry I was abrupt on the phone but was getting bombarded with calls and explained the situation. She understood of course but then shared a piece of the puzzle I didn't know. . . before she called my cell. She called my home phone. Daniel answered it and said, "Hi mom!" Laura answered, "it's not your mom, it's Laura from down the street". At that moment panic must have set in, because he is not supposed to answer unless it's from myself or Todd, so he just hung up on her! Kind of an "oh crap, I'm not supposed to talk to her, so I'll just hang up as fast as I can and then maybe no one will know and it will have never happened" hang up. Which is why she called my cell, to make sure I was indeed home and Zachary and Daniel weren't in a bad situation. I still laugh when I think of Daniel realizing he'd answered the phone and hanging up on her! I am also very grateful to have good neighbors looking out for us and having my back as well as my children's. And also don't mind if they get hung up on occasionally...

Sneathen Adventure

2010-02-15T10:46:00.005-05:00

We are home. It is 10:45 am the day after our arrival and Zachary is still in bed. He is exhausted, as we all are, but he is really exhausted. I am reflecting on how much it has affected him, physically and mentally to try something new and I think about Daniel and how much harder it is for him. What does that do to him? How hard is it for him to learn something new, when the rest of us collapse in a heap after putting ourselves out there physically and mentally? It is overwhelming for me to think about.

Backtracking two days. Our family packed up and headed north. Our friends invited us to go to Schuss Mountain in Michigan for a weekend of skiing. It was President's weekend and according to those at the resort, the busiest day of the year for them. I belive it. It was packed.

We arrived late afternoon Friday. We had reservations for tubing at 5:00 pm. After unpacking we headed to our friends condo. This was not enough time for Daniel to settle in. We usually get to a room and he likes to hang out, watch movies and get really comfortable in his space. The problem with that can be that then he doesn't want to LEAVE his space. He doesn't know what's out that door and likes his little hotel room, why leave? Well we were leaving. Right away. He didn't love this idea. But he came along and was griping the whole way. We drove to our friends condo, getting only slightly lost in the complex on the way. This is also not acceptable in the big book of Daniel (bbod) (thanks Aunt Judy!) We made it. Only to get to the condo and have everyone say, "ok, let's go tubing". Again a bit jarring for Daniel. We were telling him these things would happen, but I did not write it down (probably should have) and he seemed a bit confused.

We got to the tubing hill. My thought was this would be sledding at the optimum for Daniel. There was a tow rope, so you hand the circled rope end to the attendant, sit your butt down and he hooks you onto a tow rope. It then pulls you up the hill for a leisurely ride, and pushes you off to the side at the top. You jump on your tube and sail down the hill. It was a blast. No trudging up the hill to the top each time. Here is what Daniel did NOT like about it. These are the things that are hard to anticipate and you have to adjust to on the spot. He didn't like being pulled up the hill backwards on the tow rope. He adjusted that maybe the third time up. When shooting down the hill, I never once did it without spinning around. He did not want to go backwards down the hill. I actually didn't mind it because I wasn't getting sprayed in the face with snow when I was backwards! I believe Todd suggested he go on his stomach, which I would have thought would be uncomfortable and spray snow all over your face. But nope, it worked for him. This is when the tag team parenting is helpful. I would not have thought to suggest that. I guess on his stomach he could change his direction with his feet? I don't know, but it worked and I was happy he was happy! We tubed for an hour, that's what the passes were for and I think the adults were all happy we were limited that way! It was a blast, but we were ready to get warm. Back to the condo.

Daniel survived this back and forth rather well. I don't know if he could have handled it a few years ago. 19 people back to the condo for dinner! I had brought some of his favorite foods, we hung out,he had a quiet place to go to, the kids went swimming! It was all good! Success number 1 complete.

The next day Zachary was signed up for a snowboard lesson. He has never been on a slope of any kind. We went back and forth between skiing and snowboarding. We went with snowboarding. Daniel had been insisting he would ski the whole week, but once we got there he stopped talking about it. I don't know why. Maybe it was the impressively tall black diamond runs in front of the lodge. Maybe it was all of the people skiing around who looked so proficient. I don't know. He can't put it into words. It was overwhelming to ME, so I can't even imagine. I had never skiied in my entire 42 years, so I was feeling a bit anxious myself. For some reason I wanted to give it a go.

My friend Jodi, who I've talked about before, hadn't skiied in 20 years. Todd was willing to hang with Daniel while Zach was in his lesson, so Jodi and I pushed each other to sign up for a lesson. I was proud of us! We had a wonderful 60 something year old instructor named Dave who proved to have the patience of a saint. We spent the hour with him, bought lift tickets and hit the slopes. Zachary and I were pretty frustrated but powered through as best as we could. Daniel continued to watch from a far. We had many conversations about the whole adventure. He seemed to be watching intently and listening as we talked about ski lifts, "magic carpets", and the hills. He took it all in. He decided that "next time" he might go a step further than passive observer who eats snow.

The thing I was the MOST impressed with for Daniel was Saturday's dinner. Most everyone else there would not even know what it took for him to get through it. Dinner for 19, in a crazy crowded (huge) room. In the beginning a musician was playing, there were tv's on everywhere and the noise level was high. We chose a strategically placed seat with his back to the big screen tv. We tend to choose restaurants that are FAST. This was not fast. 19 people in a jammed packed restaurant can never be fast. People were getting up, going to video games, and milling around. This is also not ok in the big book of Daniel. According to him you stay put. We work on this all the time, but he was continuously asking where everyone was going and when would his food get there! After a while he settled in. I'm not sure how long we were there but I'd say almost 2 hours. The promise of swimming after might have helped pull him through. All of the kids got their suits and headed to the pool! I watched from the side, chatting and possible having a cocktail or two...

Todd suited up on Sunday and I hung with Daniel, packed up our room, and had coffee in the lodge. All much more up my alley than skiing down the slopes. (or falling as the case may be) Zachary and Todd did some runs together. Daniel and I watched. Todd's 20 years between skiing seemed to disappear as he went down whichever run he chose (some things are not fair!) and we had a great weekend. I think it will be better for Zachary and I to get a bit more proficient, then when Daniel decides to dive in, we can be a bit more helpful and supportive.

All in all, we had a wonderful time. Daniel didn't ski but there were lots of great activities that he could be a part of. Maybe, I'll improve my skiing? Maybe not. Maybe next time Daniel will give it a go. We so so appreciated being included in the weekend. Another Sneathen adventure is in the books!

A Grand Day Out

2010-02-11T09:26:00.004-05:00

Tomorrow we are packing our bags and headed north. We are following the lead of many many Michiganders and going SKIING. Yes, you heard me right. Skiing. Do the Sneathen's ski you ask? No. No they don't. Todd is the only one who has ever skiied and that was 20 years ago.

Zachary is officially signed up for snowboarding lessons on Saturday. We are going tubing on Friday evening as a family with all of the other families going. This seems like a good plan, it will help us get familiar with the area, the snow, the "mountains" (this is Michigan, let's face it, they are really really big hills).

Daniel is CERTAIN he will be schussing down the mountain. He says, "I'm going to ski down the mountain with the Wallace and Grommit theme song in my head". Have any of you seen the Wallace and Grommit claymation movies? Daniel LOVES them and in one of the movies, (I can't remember which one and I've tried to google it and STILL can't figure it out. Where is Daniel when you need him to fill me in?) they are skiing down a hill "with the theme song playing", which is why Daniel will be hearing the theme song in his head.

So my preparations have begun. The food for my picky eaters for two days. Prepping Daniel for the fact that you actually FALL when you ski. A lot. I've been buying ski pants, hats for under helmets (a must), signing up for lessons, getting directions, making food, packing our entire winter wardrobe as well as our pantry. All for two nights at a ski resort. Two frightening, new, exciting, possibly disastrous days "up north". But then again, who knows? It could be fantastic. Either way, I'm sure there will be some good stories. Sometimes I think I must be crazy. But I thank our friends who invited us. I'm glad you are willing to take on the Sneathen's for a few days! More to follow....

Dear Hormones

2010-02-05T20:35:00.005-05:00

Dear Hormones,

I have heard about you. Ever since Daniel was a newly diagnosed child with autism, people have warned me about you. I knew you were coming. I dreaded it even. I never thought people were exaggerating, but it's hard to imagine some things until you are in the middle of them.

You have made my guy spring up into an even bigger guy. You've made him as tall as his dad at 13. You've left his dad's shoe size in the dust. You've hit Daniel so hard that sometimes he doesn't know WHAT hit him. You've made him volatile. You've made him angry. You've made him unsure. You brought back the aggressiveness that had become part of his past.

You've brought back the discussions with school, the "reports to administration", the lightning fast loss of control, only to dissipate to show us our sweet sweet boy again. You rear your ugly head, making it hard for Daniel to control you. He could barely contain himself before, but now you take him by surprise. He doesn't know what to do with you and neither do I.

I have been warned about you, from parents, from teachers, from blogger friends, even from Temple Grandin! I knew you were coming and still we can't stop you. It's a part of growing up, a part of development, I know, I know. It's a hard time for everyone! But as usual, for a person with autism, it's even more confusing. For a person who is trying to control his actions 24 hours a day ANYWAY, you make it harder. And for that, I am angry at you.

I am angry that I am back to dealing with aggression. I am angry that you make Daniel feel bad about himself when you enrage him. I'm a little bit angry that my little boy is no more. I think it's a bit harder to accept since in so many ways he still is a little boy. He likes V tech toys, Winnie the Pooh and the Seven Dwarfs. But still you come.

I know we will get through this, it is yet another mountain to climb. Sometimes I wonder if I will ever get over a mountain without seeing another looming in front of me. This is a big one. But we'll make it over you. We may fall a few times, we may slide backwards, we may even start an avalanche or two, but I bet the view from the top of that mountain will be worth it. You are pushing my boy towards manhood, just don't push his mama off the cliff. . .

Home Alone

2010-02-04T08:42:00.003-05:00

I have broached the subject of "when to stay home alone" on this blog before. It is hard enough with a "typical" child, but as usual, you throw in the autism shake it up a bit, and you get a mess.

We have practiced. We have done mini trial runs. We have written out rules. We have done phone practice in therapy, starting over a year ago. We have prepared. A lot. We have left him for 5 minutes, 15 minutes, been across the street, at the bus stop, the list goes on and on. I leave the phone with him and call him during these trials and he answers, sometimes not saying anything, but it's practice.

Saturday came, and it was nearly time for Zachary's basketball game. It was pretty clear that Daniel would not be ready to go in time. The game was at noon and the precision timing of lunch and dressing on a Saturday was not coming together in our favor of getting Daniel out the door. He can't be rushed and he has to get everything "done" or you might as well not go out. He'll be a wreck and it will be miserable and we'll pay for it in some way or another. As this was unfolding Saturday I said, "Why don't we leave Daniel home, he can eat his lunch and stay on the computer". My husband was surprised at my leap of faith. He stated, "I didn't think that was an option, but I think it's fine". So I quickly went over the rules, made Daniel do a quick practice run on the phone, and gave him his lunch. We were going to be gone for just over an hour. The basketball game is an hour, and we are very very close to home. I was nervous, but ready to take the plunge. It was probably better that I didn't have much time to think about it.

We set him up and left. We got to the game and the first thing out of my friend Jodi's mouth was "where's Daniel!?" I told her and she looked surprised but knew it would be hard for me. We pushed the parents from the game before out of their seats and settled in for 4th grade basketball. We were happily chatting while the teams got ready and my cell phone rang. I froze. I carefully looked at the screen of my beloved Blackberry to see "home" on the screen staring back at me. While Daniel has practiced calling us he has never ever picked up the phone on his own to call someone completely unprompted. I believe Todd said "answer it" because I was just staring at it in disbelief!

me- "hello?"

Daniel- "Hi mom!"

me- "How are you Daniel, is everything ok?"

Daniel- "yeah"

me- "are you just calling me to say hi, or are you nervous?"

Daniel- "I'm not nervous"

me- "are you calling just to say hi?"

Daniel - "yeah"

He was so sweet and I was SHOCKED. What a step! I was relieved. I talked to him for a few minutes and told him how great he did and when we'd be home. I still can't believe it, honestly.

The game progressed, as have the 4th graders skills, and it was nearing the end. I realized I should call him and do the usual check in. I dialed home. It rang 5 times and went to voice mail. My heart starts quickening. I hung up, and called again. Same thing. The quickening is turning into a pounding. He has NEVER not answered before. Never. I think, "he could be in the bathroom, he wouldn't take the phone to the bathroom". I dialed a few more times and nothing. Todd pulled out his phone to try (he is only supposed to answer two different numbers that come across caller id, mine and Todd's) same thing. Nothing.

Jodi says "is this good or bad?"

Todd says "it's very bad" and stands up grabbing his coat. It's the end of the game now, but Zachary has to change his shoes, do the congratulating and it will be a few minutes. Todd looked at me and said, I'm going home. Jodi offered to drive Zachary and I home while Todd went home.

I was trying not to panic. I get an odd calmness in some instances which I achieved then. I actually told myself that freaking out wouldn't help. If something went wrong it already did and I couldn't change it. I should wait before I freak out. Wait until I really hear that something was wrong. I was hoping he wasn't following the script, but that seemed somewhat unlikely. It didn't make sense to me. Jodi praised my self control, but I didn't feel I had much choice. I didn't want to upset Zachary unnecessarily. I also didn't feel in control, my mind was going crazy, but on the outside I went about our business.

We were walking out to Jodi's car when my cell rang. It was Todd. Daniel was fine. He was on the computer listening to music SO LOUD that he couldn't HEAR THE PHONE. I could hear Daniel in the background I knew he was upset. I was fairly sure Todd had yelled at him in his panic. Daniel felt like a failure.

When I got home I went and talked to him. He was red in the face and looked very very sad. I told him how amazed and proud I was that he called me to check in all on his own. I told him it helped me know he could do this on his own. I talked him up. I could see his face turning upwards, and some pride filling him back up. I then had to say it scared us when he didn't answer the phone because that is the rule if he's staying home. He deflated a bit again. I told him we'd try again soon and I was sure it would be better next time. We went on with our day. While I'm thinking back, I can feel the joy of him calling us, and the panic of him not answering. I questioned myself wondering if he was ready. I wondered if my parents when through this stress when they left me alone the first times. Do all parents go through this? Is is more stressful because of Daniel's autism?

What I do know is this. It is important for him to learn these skills, and it's important for us to give him independence. We'll eventually get there. I just hope I live through it!

Sticks and Stones

2010-01-28T14:42:00.005-05:00

Sticks and Stones can break my bones but names will never hurt me. That was a chant that we used to say over and over as a children. I can still hear it ringing through my head in that sing song voice. I wish it were true. Broken bones can heal, but sometimes the sting of some one's words have a much more lasting impact.

This is something my friend have been "talking" about over email for a week now. Last week her daughter came home from school very upset after listening to an exchange between two of her classmates. It went something like this, "you are a retard" "no you are" "no you're a retard". You get the picture. Emma had been prepared for this day. Her parents had prepped her on what to do. She was to stay out of it and come home and tell her parents, which she did. You see Emma has a brother with Down Syndrome. I have written about my friends here before. She has a blog, find that here. Amy, the mom and my friend, emailed me about what she should do. She was very angry and hurt and her words broke my heart as I was reading it. I could feel her rage, and her disappointment. It's never easy to see your child wounded with words. I suggested she email the social worker at our elementary school. I have always found her to do a tremendous job teaching the children about things like this. I am convinced she is the main reason most of the children in Daniel's class are wonderful advocates for him. She followed my advice and emailed the school and suggested that they look into this link.

Monday Emma came home and said that all the 4th grade (it appears that it may be more of the classes too) had a time with the social worker and principal. It had been a difficult subject for Emma to hear. She cried during the discussion. My heart ached for her. Much to my surprise (and genuine delight!) my son Zachary stood up and added his two cents (being the noble advocate that he is). He talked of his brother Daniel and some of the challenges he faces. He has done this before and it seems that the social worker and he are becoming quite the tag team! Emma felt very grateful for Zachary standing up and giving his speech. She felt very supported. I felt very proud. He hadn't even told me about it. One of the other boys said that Emma was "very brave".

When I asked Zachary about it yesterday he told me some of it, but wasn't really interested in sharing. He did say that kids talked about their Grandma's or parents who use the "R" word and therefore, they had no idea it could be hurtful to some people. One girl said she used it in the past but never would again. Zachary couldn't understand why adults might be using such language. We talked about that for a bit. I told him that maybe no one every explained that it is wrong, maybe they choose to use it anyway. But for sure they don't know if they are never told. It sounds like it was a very good discussion and it sounds like many kids responded to it. I'm very proud of Zachary that he continues to advocate for the kids that can't always do so for themselves. I'm proud that he supported his friend, when mostly no one else did. I'm proud that he is so self assured that at barely 10 he has the bravery to do that. I am mostly thankful that Amy and I can keep up the fight to be accepting of everyone, and we can do it togther and that our kids will be behind us doing the same. I'm hopeful that we can change the "R" word to a more positive one, like Respect.

As I was finishing this blog this story came across from disabliity scoop. Read about white house chief of staff Rahm Emanual being quote in the Wall Street Journal asying "f_ing retarded". Read about that here. Apparently, we have a lot of work to do. I for one, am hopeful.

Look, It has a Handle!

2010-01-20T10:00:00.006-05:00

Yesterday was a very exciting day for Daniel. A large package was waiting for him when he arrived home from school. He has been eagerly anticipating it for several months now. He was one happy child and honestly, it is partially because of this blog!

I had written about Christmas and the VTech Little Smart Alphabet Picture Desk he so coveted a few times. Several days after Christmas he had finally found the words to tell me that Santa had brought the WRONG one. Since that time I had been scanning the internet sites looking for the "right" one with little luck. I had found one, but the guy selling it had a TERRIBLE seller rating and a few comments from angry buyers looking for their product. I thought that was probably a disaster waiting to happen, so I didn't bid on it. The only thing worse than the wrong one, is paying for it and it never arriving! So I played it safe and kept looking. I couldn't find it. Every few days Daniel would ask about it and say in his sweet voice, "but I really want that". It might sound demanding here, but he says it with such love and longing and really, he almost never asks for anything. When he a. finds something he loves and b. finds the words to ask and express his desire, it is almost more than I can handle, and I want to find it for him. Daniel's requests were getting less frequent as time was passing and it was slowly working itself out of my head.

Then I received an email from a reader. She is also a friend of mine who lives here in East Lansing. She has been very supportive of my blog and of my family. Her daughter and my youngest son, Zachary, are the same age. She sent me a very nice email about my blog then had a link at the bottom saying, "you've probably seen this, but is this it?" I clicked on it, and it LOOKED right to me, but I've been down this road before, and I was wrong. So I decided that before moving forward I would wait and show it to Daniel. After school that day I showed him the link and his little eyes lit up and he said, "let's get it". I tried to explain that it was on E-Bay and you have to "bid" on it and there is a possibility that we might not win. There was something like 5 days left on it, but I put in the first bid and let it sit. Zachary, being ever so helpful, said he was SURE we'd win because who else in the world would want that? I told him he may be surprised, because it is amazing what people want out there, and if we wanted it, why wouldn't someone else in the world? He was doubtful.

When Sunday rolled around I remembered that it was the final day. All day I kept telling myself DON'T FORGET TO WATCH EBAY, DON'T FORGET TO WATCH EBAY. I'm not very good at that sort of thing and I've been known to let the deadlines slip by unnoticed. I hadn't mentioned it again to Daniel, for fear of losing. When I checked back, two other people had bid on it. There was going to be a war....I knew it. I waited until just before to up my maximum bid. I talked to my husband about what exactly were we willing to pay for this thing? I was starting to feel anxious and just wanted to win, which is of course why E Bay is so wildly popular. Obsessive people like myself get carried away and pay way more for something than they should. It makes the seller happy and everyone is a winner...sort of. The only good news to me is that both of the bidders were amateurs like myself. You can see how many items people have bought, so I sort of figured they wouldn't have one of those programs that outbids me at the last possible second. Which has happened to me, by the way.

Anyway, we won! Now I just was hoping it would arrive and WORK. As I mentioned, it did arrive, yesterday, with batteries included. I waited to open the box until Daniel was there to do it with me. It came out of those Styrofoam peanuts and I swear you could hear the angels singing! He said, "oh there it is! It's the right one!" He sat down and started playing with it. Ignoring his usual after school rituals. He hadn't moved one foot from the spot where we opened it. I suggested he get his snack, because if he doesn't eat he gets super crabby. Zachary and I were playing Rummikub in the kitchen and Daniel, instead of bringing the toy with him to the kitchen, was getting his Saltines out (10 of them exactly, not broken in any way please!) and his Poptart (I know, terrible) and he kept sprinting back into the family room to hit a button when it would start playing. Back and forth, not wanting to miss a thing. It was so adorable! He was IN.HIS.GLORY. It was wonderful.

Eventually my husband came home from work. Daniel was still playing. He showed it to Todd and said "Look it has a handle" as if that was the most important thing ever, it implied portability, I'm sure. It was finally Christmas morning in the Sneathen house, as far as Daniel was concerned. Thanks Michele (I am not talking to myself in the 3rd person, that's who sent me the link :) You are an incredible friend!

Seriously? How happy is he? How cute is he? Notice the box right behind him. That is how far he made it. This falls under the category of "better late than never". Merry Christmas?

What's for dinner?

2010-01-19T08:25:00.005-05:00

I am sure that I have written about food before. Frankly, I'm feeling too lazy to look back and see what words of wisdom I have spouted. Those of us with children "on the spectrum", or if they are on the spectrum and probably anyone who spends time with kids on the spectrum, know that food is a hurdle. It's rough. The desires, the textures, the "diets". They can run our lives.

The Sneathen's have never done "the diet". I am constantly asked if Daniel is on the gluten free/casein free diet (GF/CF). He is not. He is almost on a self imposed casein free diet (dairy for those unschooled). He used to drink milk when he was a toddler. He drank milk, ate grilled cheese, put cheese on his beloved hamburgers. He slowly phased this out of his life. First he cut milk. Then stopped the grilled cheeses and eventually, as happens with him, he stopped the cheese on the hamburger after an unfortunate incident in a Johnny Rockets. He saw the stringy cheese on his burger and started gagging profusely. I was sure he'd throw up on the table, but we got it away from him fast enough and the gagging ceased. That was it for cheese. That is usually the way a food disappears. He will go along eating it and one day it will make him gag or even throw up and it's gone. That's what happened to oatmeal. He ate it every day for months and months then one day he took a bite, calmly stood, walked to the bathroom, threw up and has never eaten it again. I find it only slightly gross and even more fascinating. It's not even usually a spectacle, he just pukes and says he's done. Weird.

Cheese is on his list of "hates". Now that I'm writing this, I do realize I have written about pizza, which is where I'm going with this. In the past year or two he has wanted to eat pizza. I find this to be a positive, since generally, pizza is associated with being social as a teen. You have a party, hang with friends, and pizza is sure to be involved. He nibbles on it like the squirrels in our back yard who have been eating our gingerbread house. Tiny tiny bites, very slowly. His pizza consumption has been limited to Little Caesars because there is hardly any cheese on it. It is a widely chosen pizza for parties, because around here you can get a large pepperoni for $5. They call it "Hot and Ready", which I never really thought about the suggestive nature of that tag line, but you can walk into a Little Caesars, pay $5 and walk out with it immediately. Hence the "ready" part. It's a good deal. Not the greatest pizza, but great for parties. Daniel nibbles away and tentatively asks, "is it just dough?" He is asking if the cheese is dough. He has convinced himself this is the case, and frankly I don't fight it. I smile and nod and he goes along with it. Todd and I are sure he actually knows it's cheese, but is the classic case of not thinking about what you are actually eating. It's just easier that way.

I, of course, realize pizza isn't the healthiest of foods and that many many people with autistic children are trying to get their kids OFF of dairy. But for some reason, I would like to add pizza to his limited repertoire. Daniel, actually does well with his "sides". He will eat as much broccoli, green beans, and carrots as you'll put in front of him. Same with pears, bananas, cantaloupe and watermelon. He'll eat "salad" which for him is plain romaine lettuce. He'll also eat other green vegetables but not with as much enthusiasm as broccoli and green beans. Our main food problem is his lack of variety with an entree. He will only eat a hamburger (plain) and a brat (but barely) and blueberry waffles (plain). That's it. So it would be nice, if we are away from home if the kid would eat a slice. He is getting so big (5'7" and 170 pounds), he's a teenage boy, and he needs a LOT of food. I'm trying to increase the fruits and vegetables, but that only goes far.

Last night, I ordered a pizza. He has his speech social group from 5:30 - 6:30 and it seriously cuts into dinner time. I, personally, could eat pizza all day every day. Marco's, is my pizza of choice right now. It is GOOD, but well, cheesy. Which to me, is a good thing. I ordered at the end of group and drove over and picked it up on the way home. Daniel was commenting in the car how delicious it smelled. He had already eaten some before group, he can't make it that late, so he had waffles, pretzels and a huge pile of carrots. (gluten gluten gluten). At home, I opened the box, and Daniel was still hovered over it. I asked him if he'd like a piece. He never had Marcos before (since there is you know, more cheese on it). He very enthusiastically asked for some. This is how the conversation went:

Daniel (taking a bite)-Does this have cheese?

Me- Yum, isn't that good?

Daniel - Is it just dough?

Me- smile like an idiot.

Daniel- (still nibbling) Are these strings, CHEESE?

Me- What do think? (The classic parental reflecting)

Daniel-It's fine.

I'm not sure if the, "it's fine" means it's ok if it's cheese or that it tasted fine. But I for one, try to avoid lying. It doesn't go over well with him and I'm leaving it up to him to figure it out. My husband was in the next room with our other sick kid laughing at my avoidance of the questions and Daniel's constant questions. When he finished his slice he said, "that was good", cleared his things from the table and walked away. I'm considering it a positive. Except for the fact that I have to share. I'm not a great sharer to be honest with you, but I'm willing, to make an exception!

I feel like the gluten free thing is knocking on my door again. We have a Dr. coming to speak at a parent group. I can't attend due to a meeting for my new advocate job. But it keeps coming up over and over lately. A sign or just coincidence? Why do I feel some guilt about not giving this a go? Who's tried it? Did it help? I'd like some feed back. In the mean time, I'm going to heat up my pizza for lunch.

Top Ten for 2010

2010-01-02T12:09:00.010-05:00

Holy cow! I haven't written a blog since December 12! How can that be? December is one of those months that is for sure. We had a pretty low key Christmas here. I didn't go crazy this year for once but everyone, mostly, came out happy.

Daniel has taken a big jump, language wise, and we are overjoyed every day about it. I decided as a summary for the last several weeks to give a count down of what we have been up too. Sort of a shout out to the new year countdown and a few things I'm thankful for.

10. December is finished. Besides the obvious holidays December included TWO count them two full moons. In our house that means very heightened yelling and uncontrolled emotions. The thing that is frustrating for Daniel is he has no idea why he is feeling so completely uncontrolled and out of sorts. It's frustrating for everyone. He really scared Zachary on this last one and didn't hurt him physically, although he "poked his foot" hard and pulled up from an all on attack at the last second. Since Daniel now has 100 pounds and considerable size on Zach, it is easy to understand how this scared him. On the way to Daniel's time out, he scratched Todd. I, as usual, was left unscathed. He definitely is particular about who he goes after....this is going under the category of, "thank goodness that's done".

9. My dad came over for his usual Christmas Eve overnight. My boys really really look forward to this. I made a lovely dinner (Rosemary pork tenderloin at Zachary's request). I knew Daniel wouldn't eat the main part of the dinner but would consume all of the "sides", the roasted potatoes and squash as well as his "salad". (Which is just plain romaine lettuce, but hey, he eats it and it's the healthiest part of a salad.) He had frozen waffles instead of a perfectly prepared (if I do say so myself) tenderloin that melted in your mouth. At dinner Daniel made the announcement that, "I HATE PORK". I did mention to him that no he really doesn't hate pork because he eats bacon at every single breakfast of his entire life...He either didn't believe me that bacon is pork or he doesn't care, because he just repeated that he hates it, with feeling. Teenager.

8. On Christmas morning a very groggy husband got up at 6:30 am with Zachary after mutually agreeing the night before that that was the earliest he could arise. Zachary had been awake until at least 12:30 the night before too excited to sleep. That left Todd and I up until 2:00 am wrapping presents and getting things "ready". Daniel got up about 8:30. He is more of a teenager every day.

7. Later that day in Grand Rapids at the grandparents, Daniel was opening a gift from his aunt and uncle. It was a Wii game "Carnival games". He very enthusiastically said, "Look ANOTHER Carnival Games!" He wasn't rude or anything, he seemed quite thrilled, but clearly stated, we already owned it. It was rather humorous.

6. Several days after Christmas I asked Daniel if he got everything he wanted this year. He replied, "I STILL want the Vtech Little Smart Alphabet Picture Desk." I said, "you got that from Santa." He said, "no, it should have the LCD screen and two pictures for every letter." Oh no. I got the wrong one. It took him two days but he found the words to explain it to me. He then began perseverating about it. I, of course, could only find one in an auction and the comments on the auction were all what a terrible seller this guy is and people had never received the items they ordered after paying. I can't buy from him! My first thought was why wasn't Daniel that specific when he asked for the VTech Little Smart Alphabet Picture Desk for Christmas? My second thought was WOW. Amazing job verbalizing that! He could never have done that, even a few months ago. My next thought was DOH!!! Damn, I screwed up the thing he wanted most of all! Still searching....

the correct but not yet acquired toy...

5. Even though it wasn't on his list I found a great gift for Daniel, Disney's Pixar Short Films. He absolutely loves it. It may be one of his favorite gifts and it is a bonus because it was a total surprise. It features "shorts" from the geniuses at Pixar. Some of our favorites, are "For the Birds", "Mikes New Car" and "Luxo Junior".

4. On December 30 we had several families from our neighborhood to our house to celebrate the holidays and to see one of the families who left us to move to Florida this summer. It ended up being about 35 people for dinner. Yes, you heard me. (now you are understanding why I haven't been blogging). I made the entrees and people brought sides. It turned out wonderful. Daniel came down to see people and noticed that Lily, the oldest of one of the families, and is one of the girls who walks to the bus stop with him every day wasn't there. Later he asked my husband, "Dad, Lily wasn't here?" No. "Where was she?" Working at a basketball game at Breslin (Michigan State's facility) . "A men's or women's game". Men's. "I was sorry she wasn't here". That was an impressive string of questions for fact finding don't you think? This is what I mean by a language explosion! :)

3. New Years Eve, for the second consecutive year, we stayed at a local hotel with friends. This year we had 5 rooms in a block. The boys went swimming on two separate occasions. We brought the Wii, along with several games, including Rockband, Beatles Rockband, and Lego Rockband and rocked it out with our friends. I had talked to Daniel ahead of time about some of the traditions of NYE. Last year he didn't stay up with everyone as he was too concerned about his usual schedule. Since we get a suite this isn't a problem and he can go to bed when he wants and avoid the noise when necessary (which is 95% of the time). I talked with him extensively about the countdown (which I knew he'd like). He stayed up and came out of the bedroom early and helped all 5 families countdown to the ball dropping. He went around and hugged everyone wishing them Happy New Year. He LOVED it. Success. The next morning however we were all tired and the boys had been moved to the pull out couch in the "living room" of the suite while Todd and I were in the bedroom. At about 9:00 am Todd looked out to check on the boys. Daniel sat up and with some anger in his voice said, "are you waking us up?" Todd said "no". Daniel said "GOOD" and laid back down and went to sleep. Teenager! The amazing thing is that this is the kid who, if he woke up at 3:00 am for some reason, he was up for the day. He could never go back to sleep. The hormones are really kicking in.

2. While eating dinner last night, Daniel (as he does at virtually every meal) said to Zachary, "chew with your lips together Zachary". (He tends to smack and it makes Daniel NUTS). After a few minutes, Daniel said with a slightly sarcastic tone, "I thought we were eating with our lips together...." Is sarcasm entering my autistic teens repertoire? That seems hard to believe, but you can't ignore the evidence. I admit I laughed out loud when I heard this comment. It makes it easier to take the snide comments when you are just happy it sounds somewhat normal. Zachary responded, "ok if WE are, you need to too...." ahhh the sound of sibling bickering, I've never heard that before, it's actually music to my ears.

1. Since I'm doing numbers I'll mention that this is post number 150. When I first started this blog it was to communicate with the therapists at Daniel's school. Then they could find out what he is up too, ask him appropriate questions and help him with his language. Funny that on number 150, I'm talking about how far his language has come. It sounds like a great way to start the year to me. Happy New Year Everyone!!!! I know one thing, living with autism you know there will be highs and lows, but it will always be interesting. I can't wait to see what the year brings to us!

Home is Where the Heart Is

2009-12-12T14:03:00.010-05:00

Maybe it's because it's the holiday season, or maybe it's because baby it's cold outside, but I've been giving a lot of thought to "home". Many people have inspired this. My aunt, after living 4 1/2 years in her paradise of Florida is returning "home" to Michigan. There are many factors to this, one being that love of her life passed away last January. I posted about this tragedy at the time. Paradise just doesn't seem so much like paradise anymore. After wanting to live there for so long, she is coming back. She has five grandchildren in the Detroit area and my two sons, who are really her grand nephews are sort of her adopted Grandsons. When I told my boys she was moving back to the Detroit area, they cheered aloud at the table. They weren't sad we wouldn't be visiting her in paradise, but thrilled to have her a quick drive away.

Many of us Michiganders walk around, especially about mid February, mumbling about why the hell we live here. It's freezing, it's slippery, it's dark at 5:00 pm. Your tired of being cold and miserable. But Michigan is sort of an ignored state. It is beautiful. The spring summer and fall could not be better. We are surrounded by the Great Lakes. Fresh water that looks like the ocean when standing on the beach. You can be at any place in Michigan and not be more than 86 miles from a Great Lake. They are magical but when you've lived here they can be taken for granted. We enjoy our lovely weather because we earn it darn it! I even hear that some people enjoy the winter?? I am not one of them, but if you snowmobile, ski or even go sledding, I'm sure these winter months have many joys that go along with them. I've never lived anywhere but here. I have lived in Grand Rapids (west side) Lansing (center) and Metro Detroit (east). They all have their pros and cons. But one thing that is a constant is we have family here. Not a lot of family, but we have it here and this is where our families roots are.

Until we moved into our current house my husband and I moved every three years. As soon as we would get the house close to what we liked we'd pack up and move again. I have owned three houses in East Lansing alone. I can't give any great reason for this, we just never felt like we were where we should be and I guess and we always found something we liked better. I wanted to move into this neighborhood before we bought the previous house but couldn't find one. One day on a whim, on the way to the pool, we went through this house. It had the extra bedroom we needed, a master bath and an awesome basement for all the kid stuff. We were sold. What I didn't know that I would get with this house is the most amazing support, friendship and love. This neighborhood has become my family in East Lansing. There is always someone to cover for you at the bus stop, to borrow something from while in the middle of a recipe, to go play with at the park, or take a walk and chat. We have parties, we socialize, we support each other. I have felt more at home here than anywhere ever.

When I allowed myself to let Daniel walk home from the bus stop (which they walk over a 45 mile an hour street on a pedestrian overpass and walk several blocks) with his peers I was so nervous. It's gone very well and I have people who aren't even in my circle say when they see me, "I see Daniel walking with the kids, he looks so happy." There are always people watching. That is nice to know.

Last week a neighbor had some people over to make gingerbread houses. She hasn't been here as long as we have. Three years now. She baked all the gingerbread herself and built the houses so we could decorate them. She had maybe 15 people doing this. It was amazing. The day after she posted on facebook that she felt it took 3 years to feel settled and comfortable somewhere and having her "new" friends over and watching us make our houses she felt "home" for the first time. I can't tell you how much that warmed my heart. The next day I watched Daniel staring at the house I decorated. He could stare at it forever. He loves the details. He was pretending to knock on the door and saying, "I can't go in there?" I told him he couldn't fit. He then said he could "pretend to be inside" (he wanted to 'pretend'? Wow.) It just looks like such a nice place to be, inside a gingerbread house....It's nice to look at that little house and the smell of the gingerbread fills the kitchen. Who knew that a little gingerbread house could represent the coziness, the friendship and the love of home itself. Happy Holidays. I hope you feel as at home as we do. I can't imagine being anywhere else.

Walking in a Winter Wonderland.....

2009-12-10T08:17:00.007-05:00

This morning as I arrived back home after two trips to bus stops an hour apart, in blustery winds, snow that has blanketed our city, and school advisories running across our television screen, I grabbed my cup of coffee, made a bowl of oatmeal and thought about what had just transpired. Daniel, unlike most kids was bouncing off the walls with excitement this morning. Most were probably whining that our school district did not close and the promises of the HUGE storm never made it to us. Daniel, and actually Zachary too, were happy we got some snow and still got to go to school. If school closes, which only happens a few times a year, it is met by Daniel with anger, frustration and occasionally tears. After a bit of time he recovers and realizes he gets to stay home and play on the computer, listen to music and play the Wii and he somehow recovers. Zachary loves to put on his snow pants and go to his bus stop, which happens to be our neighborhood park, and fly down the snowy slide a million miles per hour into a bank of snow. Many of the kids race to the park because the one who gets there first gets the first run on the snowy slide which is the fastest slide of the morning. The only reason Daniel likes snow is because he likes to eat it. Yeah yeah, "all kids eat snow". But not like this kid. He consumes it, constantly. I gave up on that battle years ago. I try to keep him away from areas that have been salted and the "yellow" snow but otherwise I pretend it isn't happening. People constantly say, "look Daniel's eating snow!" and if they aren't really close to me I'll give him instruction to put it down, all for show. Or they'll say, "you should tell him to stop that" as if I hadn't already done that 2 million times. If I'm feeling snarky I might say, "YOU try to get him to stop, I dare you!"

(I just saw a weather update and the windchill is -4) Ahh Michigan.

The most glaring thing this morning came while I was sitting at the kitchen table and he was headed upstairs to get dressed. He usually wears Skecher's similar to this...which, I think, are actually quite stylish and you notice have no ties. An excellent choice for those on the autism spectrum. But I didn't think they'd be great for tromping through the snow. Todd had suggested a few days ago that I get Daniel some boots to wear to and from school. I was realizing as he said that, no middle schooler in their right mind would be wearing boots to school and carrying shoes with them to wear inside. Would they? Am I wrong here? I reminded him that Daniel wears size 11 men's shoes and that isn't super easy to just toss in your backpack. It would be heavy and unwieldy to carry (not good for Daniel while walking home). Todd didn't seem pleased with my assessment, but then suggested the shoes I had bought him (at DSW in the clearance section but were still $45 dollars) for his concert when he needed black shoes.

These are very similar to the shoes. They are much more substantial, heavier, with a thicker sole than the brown ones. I thought it was a good idea so this morning as I was sitting at the kitchen table and I casually mentioned that with the snow, I thought that his black shoes might be more appropriate. He looked at me smiled and said, "oh, ok, good idea" and bounded up the stairs while asking me if they were in his closet. I sat there stunned. It has been a very very long slow progression, but we have apparently gotten there. I have memories of it taking weeks and weeks to transition him into winter coats, pants, and out of crocs. There would be tears, yelling, screaming and when he was little hitting. Switching into the winter coat sent his body into sensory overload. Maybe I was wrong to force it, I know some who do not, but I could not send him into -4 degree weather not properly protected. Once the transition was done he was always fine with it. It was just that transition, it took a lot of work and energy. Apparently I am almost as obstinate as he is. In my opinion the fight was worth it. He no longer struggles with the clothes transitions.

He happily brought down his black heavier shoes, to get ready for the walks today. He had a silly little smile on his face and I could see how excited he was. I didn't ask, but I knew what he was excited for, eating the snow while walking, the whole way.

Growth

2009-12-06T22:34:00.004-05:00

As I think everyone who comes to this blog knows, loudness and autism do not go together very well. We are always trying to get Daniel to try new things because I think it is very empowering to him. As he has grown it seems he is more scared of the "idea" of loudness than the loudness itself. This didn't used to be the case, but he is 13 now. He has matured a LOT. I am so proud of him. But trying to get him to do something that he is scared to do, simply takes years. There have been times that we dragged him kicking and screaming into a situation, knowing he'd be fine when he got there (and he always was) but when it comes to most things, we go about it slow and steady. It may take years, but once he does something, he is usually there and will do it again and again.

As you may have guessed by now, we did something today that we have been trying to do again for, I'm guessing, 8 years. Last time we went we didn't get past the concourse of the stadium. He wouldn't even go to the area by the seats. Today we managed to go to an entire, women's college basketball game.

We live in East Lansing, home of Michigan State University. Basketball is BIG here. We have a Big Ten university within walking distance from our house. Along with that comes certain advantages, such has having great sports, arts, concerts and a beautiful campus all at your fingertips. There can be downsides. I don't think there is a resident who doesn't breathe a bit of a sigh of relief every summer when the area empties and all of us 40 somethings and families can reclaim downtown for ourselves for a few short months.

Todd and I have always been huge college basketball fans. It's something we love. Zachary, our 9 year old, is following suit. We are properly brainwashing him. We are both MSU graduates ourselves and except for one rogue member of our families, we all went to MSU. That person went to that other Big Ten university in our state. . . Zachary has no idea how great he has it. He has been to countless men's basketball games and has never sat any higher than about row 11. We have connections, good ones. The tickets usually come and either Todd and I go if I can scramble up a babysitter, or more than likely lately, Todd just brings Zachary and I stay home with Daniel. It's easier that way. I have to say, I'm getting a bit jealous of Zach taking over my tickets, but he loves it too. We ask Daniel if he'll go, we give him reasons why, the things he'll enjoy, like Sparty, the pep band, popcorn (always our bribe). But no. He remembers. He remembers forever.

We tried it once when he was maybe 5. I think it was a woman's game, which are MUCH quieter than the men's but by no means quiet. We walked in the doors of the Breslin Student events center with Daniel 5 and that would make Zach 2. We pretty much turned around and walked out. Daniel's hands were over his ears and he was screaming and crying. That wall of noise hit him and there was NO WAY he was going in. That was the last time he went for a Big Ten Basketball game. He has been in there for a circus. Which I find to be the biggest sensory overload ever, but he was fine for that. If it's something he loves he seems to find a way to power through it. So the key is finding something he'll love about it....it can be tricky but I can find a way. Along with 8 years of patience, a plan, and popcorn (my 3 p plan!)

We had been discussing it again. We had finally got Daniel to say that MAYBE he'd go. This is the opening. Once he allows the possibility, you have an opening. We both thought he was ready. We already decided to try a women's game. If we had to leave it wasn't a big deal, we'd just leave! Todd and I were planning it. Then Thursday I walked into Daniel's swimming and the sign that it was time to proceed came, my friend Amy said, "I have 4 tickets to the women's game on Sunday can you go?" and the deal was done. It was time to launch the plan.

Thursday at dinner I casually said to Daniel that Dad had told me he might be ready to try a game. "yea, maybe". I left it at that.

Saturday, we said that we had tickets and could go. He wasn't so sure. "It's too loud, I can't do it". Yes you can Daniel, it will be fun!!! "It's too loud" So we gave him the list of "things I can do if it's too loud". 1. cover my ears 2. go out to the concourse 3. go to the men's room and take a break (just like at school) 4. go get a drink 5. Last but not least LEAVE . He has to have an option to leave and you have to agree to it if it's requested. Otherwise he'll never try it again and he won't trust you again, and the next thing will be twice as difficult.

So off we went to the game yesterday. Here is a little montage of our afternoon.

Make video montages at www.OneTrueMedia.com

He did PERFECTLY. You want to know the kicker? At one point the BELLE TIRE GUY came on the big screen! I didn't even see it! Todd told me after we got home. Daniel just hid behind his popcorn box and Todd was reassuring him that it wouldn't come back? AND I DIDN'T EVEN KNOW ABOUT IT! That is incredible progress! What a great outing. Thanks for the tickets Amy! He's growing up! Isn't it amazing?

Christmas Decorating

2009-12-03T08:49:00.007-05:00

Every year after Thanksgiving people start decorating their houses for Christmas, well, unless that is a holiday your family doesn't observe or you are insane and start after Halloween. Facebook has allowed me to peek into the lives of others who's status say things like "I'm so excited to start decorating for Christmas" or "only 5 more trees to put up now" or from a relative by marriage of mine, who I adore, "I'm taking a break from decorating to paint my laundry room". Yes, you heard me right.

This has made me feel even more guilt than usual, because, while I LOVE how my home looks when it is completely decorated for the holidays I really really hate doing it. Really hate doing it. One of my Facebook status's read on the Sunday after Thanksgiving something like, "I am in the place of knowing I have to start decorating but really don't want to start, because if I start then I have to finish and I don't want to start". There were a few kind soles who felt my pain. But mostly everyone is jolly and (at least making us think) they are merrily singing Christmas songs while hanging the mistletoe.

I am not a total Scrooge. I put on the best face that I can for my children. I don't want them to see me muttering about the damn lights on my "prelit" tree that is 4 years old and only 1/32 of the them still light. It is maddening to me. I am choking down my complaining and smiling and turning on the Christmas music on the tv music channel. Most of this is all self inflicted, I know that. Which is why I am dealing with it myself. Todd even said he doesn't want to hear me complain. Which he hasn't. So I'm complaining to all of YOU. Of course he hasn't helped with anything, except carrying boxes for me. I don't blame him on this either, because you see as I was starting to explain, I'm nuts and I self inflict holiday pain. It starts because of my perfectionism. I don't WANT to be that way, but I am and Todd knows that whatever he does, I'll probably just redo because it's not "right". So he (smartly) stays out of my way. Of course I then start to resent him for not helping, but I know deep down if he was helping I'd probably tell him to stop. It's a lose/lose for him.

If there is a dark spot in the tree, I'll redo all the lights that just took me an hour to do. If the kids hang all the ornaments in one spot, I can't stand it and try, try, try, as nicely as I can to explain how they need to be spread out and evenly placed. Because if they aren't I CAN NOT FUNCTION. This is partially what led me to getting the second tree I referenced. The prelit tree that is no longer prelit. This is the "kids" tree. MY tree is the "big" tree in the formal living room. It is entirely decorated with only gold, and clear glass and white. It has approximately 8 million clear lights on it with a lighted star (Daniel for some reason insists on only a star at the top of a tree, no angels). And it's amazing. The kids kept wanting to put their adorable ornaments on it, which I could not do because it doesn't "go" together. (As I mentioned I'm nuts). So I got a second tree for all of their stuff. It is appropriately in the family room and covered in Peanuts ornaments, homemade things, trains, superheros etc. It's adorable, because these things go together. Keep them far away from my masterpiece in the living room!

Daniel comes into play here because I know that once I start with the decorations he wants them finished RIGHT AWAY. Hmmmmm, I don't know where he gets this from?? ahem... Anyway, he pesters me, constantly. As soon as I proudly finish one thing he says, "that looks great! When are you doing to start _____ ?"(fill in the blank) It's never ending.

Yesterday I started putting up my Department 56 houses. The kids love these houses. I USED to love them, but am really loving them no more. I now have 27 of them plus many of the small characters and set ups that go around them, like "The Town Tinker" and "Puppet Theater" That doesn't sound like a whole lot, but if you have ever put them up you know what a pain it is.

If you throw in my insanity and it is just ridiculous. I don't want to be this way, but when it's wrong, it honestly hurts me and I can't stand it. I clear off all of the books from my shelves along with the clay projects from school. This takes about 4,000 trips up and down my basement stairs to accomplish. Then I have to dust those shelves (eek). Then I start bringing up all of the boxes for these houses. It makes a mess. Which makes me crazy. ESPECIALLY when you start opening them and little pieces of Styrofoam are EVERYWHERE. I was arranging and rearranging yesterday because I have North Pole houses and the Dickens Village and they can't be intermingled and you can't have Dickens, Dickens, North Pole, Dickens. That just wouldn't be right. Then I have to get them to fit, then I have to clean it all up and put it all away. I finished cleaning up after hours and hours yesterday, sat down on the couch. Ok I laid down. Daniel came in from school, and still in his coat looked at me and said, "are you just laying on the couch?" I said, "look what I did Daniel"

Daniel GASPS and says, "oh mom it looks beautiful! That is a lot of hard work"

Me- Yes it is Daniel, it took me a long time to do.

Daniel-"the family room looks GREAT!"

He is so happy. It makes me happy that he is so happy, and you know what I realized last night? He didn't ask me about the living room. He accepted what I did happily and didn't start riding me about the other tree! What progress! I guess I need to take some lessons from Daniel, don't I!?

All I Want for Christmas....

2009-12-01T12:36:00.011-05:00

'Tis the season! At our house, as Thanksgiving approaches, it seems to be the signal for the children to sit down at our kitchen table, pull out a piece of paper and a pencil and start making their Christmas list. Zachary worked very diligently on his, the "big" item being a video camera. My artsy creative 9 year old would like his own camera to film and edit his own movies. That is his #1 choice of gift. He spent a considerable amount of time last summer making a movie with his friend Ethan. They had a BLAST and spent days working on it. I thought, what a great way for them to be creative and be independent. The more I think of it, I have this underlying fear that I will be the "victim" of his "movie making" which in the hands of a 9 year old could easily morph into spying. So IF he gets this video camera from Santa, there may have to be some rules to go along with it!

Daniel wandered upstairs and saw Zachary's completed list. Zachary offered to help Daniel (by doing the writing for him or in IEP words be his "scribe") which was greeted with great enthusiasm.

Zachary- "ok Daniel what do you want for Christmas?"

Daniel- "A Vtech Little Smart Alphabet Picture Desk"

Zachary- "What?"

Daniel- "A Vtech Little Smart Alphabet Picture Desk"

The list then continued, Toy Story Mania Wii game, The Peanuts Holiday DVD collection.....you get the idea. But number one is the "V tech Little Smart Alphabet Picture Desk". Then he says, "I really want that, I already know my alphabet (yeah, since his was 1 1/2 years old) but I want that". You see, he has a thing about the alphabet. He loves the order of all of the letters, how they always are said in order, he LOVES letters. He knows this is for little kids, but oh how he wants it. And whenever anyone asks "Daniel, what do you want for Christmas?" he says "A Vtech Little Smart Alphabet Picture Desk, I really want that", in a way that is reminiscent of Ralphie from a Christmas Story saying, I want an official Red Ryder, carbine action, two-hundred shot range model air rifle!

There is an excitement and a joy as he rattles it off, just like Ralphie does. It makes your heart go out to him. He has his mind SET. Although no one can respond, "you'll shoot your eye out kid" as everyone did to poor Ralphie. Most people just say ooooooohhhhhhhhhhh and nod politely.

How did he find this toy you ask? I do not know for sure. As much as I can figure he was googling the alphabet and stumbled across it on the internet. I have asked him many varieties of questions, such as, "did you see this toy at someone's house?" "Have you played with it before?" To which I get the answer, "I want that, I really want it". I guess it doesn't really matter HOW he found it. He did find it, and he really wants it. This much is clear. And here it is...in all it's glory!
The only place I have found it, however, is in online auctions. So here I am again. Having flashbacks to when he wanted a "Little Pinocchio carved out of wood with strings and joints" and me searching on the web endlessly trying to find this "toy" that is not a toy, until I finally found one on ebay, beat them down in an auction and took it home. I was willing to pay an astronomical amount of money for that damn Pinocchio, I mean, it is practically a one of a kind, literally carved out of wood, but I believe I got it for like $35.00. Or how about last year when he wanted MAN SIZED BUNNY SLIPPERS, and I FOUND them? It seems that every year there is one interesting item on his list that he has stuck in his head and it becomes my mission to find it.

I bid on 4 different auctions for the "V tech little Smart Alphabet picture desk" and lost them all. Granted, I wasn't willing to pay a very high price for it, so I kept getting beat out in the last second. Unlike Pinocchio there seem to be millions of them on Ebay. Why? I do not know. Is there some reason everyone is rushing to put the Vtech Little Smart Alphabet Picture desk onto online auctions? Is it so annoying that they want it out of their house at any cost? Do people not just give crap like that to Goodwill? Why go through the bother of selling something for $4.99? Which by the way is what I purchased this coveted gift for, $4.99 plus $6.95 shipping and handling. I have a feeling that the $50 Wii games, train tracks, $59.99 robot that will also be under the tree, will be second fiddle to the $4.99 used, "Vtech little smart alphabet picture desk". But I'll have made him very happy because I have again found the random item that he asked for and Daniel RARELY asks for anything. Let's face it, at least he won't shoot his eye out, and maybe, Zachary can film him playing with it!

Weekend of Beauty

2009-11-22T19:41:00.008-05:00

This weekend has been quite a monumental one for Daniel. It started on Friday night with the annual Silver Bells celebration in Lansing. I'm not sure how this celebration started but essentially it kicks off the holiday season. There was much debate between the adults in the group that I watched it with, but I believe it is the Friday before Thanksgiving every year.

It starts with a sort of Electric light parade. The floats are all covered in lights, not only is this beautiful but essential because it is getting dark here at 5:00 pm every day! Daniel has his favorites from year to year, the top of the list is the double sized city bus that looks like a caterpillar and the "Christmas train". Santa is riding on one of the floats. The excitment in Daniel's eyes it just priceless and he was singing Christmas carols at the tops of his lungs through most of the parade. When the parade is over they light the Christmas tree in front of the state capitol followed by fireworks over the capitol building. We go to our friends conference room in his office building to watch the fireworks which gives us a wonderful view of the show. Daniel, as always, was yelling "Magnifique! Bravo!" The 3 year old next to him was echoing every word, which was just adorable.

It has become a wonderful tradition to go just a few miles to our state capitol and kick off the season this way.

Saturday night Daniel was invited to a birthday party! It is his friend Emma who lives down the street. She and her family have just been wonderful to Daniel and our whole family. I feel so fortunate to have them in our lives. Emma turned 13 and had "a garage dance party". Daniel was walking around saying, "I'm so excited to go to Emma's garage dance party" over and over again! We weren't sure how Daniel would do at the party with the noise and 30 middle schoolers being crazy for 2 1/2 hours but he had an incredible time. It was from 7:30 until 10 pm. I was graciously invited to stay to keep an eye on Daniel and be there to help if he had a hard time with the noise.

When we arrived the kids were in the garage popping all of the balloons that were throughout the space. This sent Daniel back into the house (not only him there were other kids who felt the same way!) Once the balloons were all popped it was an "all clear". The lights went out, the disco balls went on along with the ipod attached to two huge speakers and the dancing began. I have to say it was a lot different than I remember the 7th grade parties I went too. I have memories of girls literally stuck to the wall on one side of the room and the boys on the other and never really moving the whole night long. Here, they were all intermingled, under the watchful eye of parents, enjoying themselves. Daniel, who has no inhibitions whatsoever, let's loose when it comes to dancing. He is the bumper sticker that says, "Dance like nobody's watching". I wish I had a just a small amount of that. To not care what anyone else thinks can be a good thing sometimes.

When Emma's dad turned on the lights at one point, Daniel responded how they all did, with a loud "awww, what are you doing!?" Apparently, at one point the kids were all in a circle with people taking their turns with solos in the middle, with cheers from their peers. Daniel took his turn in the middle of the circle to chants of "go Daniel, go Daniel". I, unfortunately, missed that part, although Todd was there to see it. And he hung in there! At about 9:40 I looked at him and could see how tired he was becoming. We went back into the house for a break. He looked at Elizabeth's gorgeous gingerbread house (that is a replica of her house) that is just amazing. He loved the gingerbread house so much and she loved that he appreciated her work! Here is a picture of him taking in the house.

It was truly a magical weekend for us, but especially for Daniel.

No Reason

2009-11-15T15:24:00.005-05:00

We only have a few weeks left until our 12 weeks with a para sub are finished. Daniel's para is on a 12 week family medical leave. She had a beautiful baby boy this summer and starting with the first day of school started 12 weeks off to be at home. While I was very happy for her, this left me with a lot of anxiety as this meant for us, the first 12 weeks of middle school were with a sub. We had tried to arrange a sub of "choice" and because of many different reasons, that didn't work out. Except for some minor bumps in the beginning and the horrible two days during the full moon, things have gone remarkably well. The sub who has stayed with him came in on day two and after a week of subbing agreed to stay on until Mindy (his long time para) comes back on November 30. Let me say, this sub has been AWESOME. We have been so so lucky to have her for these weeks. I can't imagine the difficulty if we'd had to bounce around from person to person this whole time. But it has obviously been an adjustment. She doesn't know Daniel, although she's learned pretty quickly and has a wonderful calm nature about her that he needs.

During the "full moon incident" I could feel myself wanting that date to come. As great as his new school has been and as well as they have gotten to know him, they still don't KNOW him like Mindy does. I've felt that these last two weeks. Again, this week a few things "happened". I have been working closely with his teachers. They have talked to me a lot trying to sort out the "Danielisms" that appear that they don't know what to do with. I can shed some light for them, but without being there and just hearing their explanation of things, it can be hard to figure out.

This past Thursday apparently right after I got in the shower to get ready for work, my cell phone rang. I didn't hear it obviously and since it was charging in my family room the next 30 minutes that I was getting ready I had no idea they had called. Of course they never called my home phone either, but I had told them cell first. I, silly me, figured that they would then try my home number, but I guess not. I was walking out the door to head to the office and my gut kicked in. I thought, "I had better check my email". Which I did. Only to find these two emails:

1. I need your to call me right away 3*3-$%^$ then 20 minutes later....

2. Re: Okay, I think we are okay...hopefully. I will call you if anything else happens. Ms. _____ did not do anything and Daniel went after her and got in her face.

First I know from first hand knowledge that it is scary when Daniel comes at you. He is big. After a trip to the Dr. this week I know he is 170 pounds big and about 5'6" tall. He is careful not to touch you because that is his line. But it takes a strong person to stand there face to face with him. I know because I'm usually one of the people he'll do it too. The funny thing is, he'll only do that to the people he trusts. It's almost like he is calling out to you for help. But I digress, I need some feedback here to know what your reaction would be, because my reaction to the email's was NOT GOOD. First I called the number in email number 1 and no one picked up. Probably because things were under control and they were back to class. So I left a message saying I was in the shower and missed the call and that I would email her.

So I emailed and "lost it" in my email. I was pissed. More than pissed. I told a friend of mine that I was yelling at a teacher in an email and she said "you mean with all CAPS?" . . . not that much yelling, but I answered and copied my husband, the social worker and the AI teacher consultant. I tried to explain my rage as I will try to explain it to you, my readers. First I'll say as I mentioned earlier they aren't asking me to come and get him or anything like that, they are letting me know of the situation and asking for my input on what triggered him, usually. I am fine with that. If anyone can help them find the triggers they will all be happier, including Daniel, my main concern. BUT that phrase "______didn't do anything and Daniel went after her and got in her face, set off my triggers. I know part of it goes back the fiasco 1st grade year where I heard daily and in meetings that "everything is fine and he can't handle it and goes off for no reason". I had a flashback, similar to the veteran who hears the car backfiring that makes a dive for cover. I went into defensive mode.

I explained as clearly as possible, that Daniel does not go off "for no reason". It may not be a reason that they see, but something set him off and it is up to THEM to figure it out. I will help but do not tell me it was for no reason. I went on and on and on. . . and on. I said my best guess, having no explanation expect he "went off", was among other things, that possibly some of the kids around him were acting up and no doing what they are supposed to and/or some of the work was too frustrating etc. His speech skills are still very limited, especially when he's upset. So he can snap in frustration. Which is what happened. I later learned that:

1. in 1st hour in computers his keyboard stopped working (who has not freaked out from their computer breaking down? and this sends him into orbit) It sounds like he actually handled it quite well. He "went to the boys room" which is one of his things he is supposed to do when he is stressed. It gives him a walk and an away safe place. He can sing in there, which helps calm him down. They switched his keyboard and he was back on target but still running a little higher than normal. On to second hour. . .

2. They were doing a very difficult assignment (sound familiar?) he was very frustrated with.

3. They had a lock down drill. He usually does well with these, but with the other two things having just happened he was on edge and apparently some of the kids were talking and laughing (which is against the rules). Making him lose it. (again, sound familiar? am I good or what?)

I didn't hear anything after my email went out except from my husband who said he was 100% behind me and he thought I explained my anger quite well. After talking to him I began to relax myself and headed off to work.

I got a rather surprised apology, still not really understanding MY losing it, but explaining she did not mean to offend me in any way. (and probably telling her co-workers that Mrs. Sneathen went off on her 'for no reason') :) I actually still couldn't bring myself to answer her so I didn't. I then got an email at 4:00 and again and 6:30 (in case I hadn't received it). I wasn't answering and I think I was driving her crazy, but I didn't want to answer until I felt better about the situation.

I finally responded the next day. I basically said I knew that nothing was meant by it, but that "for no reason" thing will set me off every time, again explaining why. The lesson for all of is pretty obvious....autistic or not, we all have triggers and they are different for everyone. The difference is that even in my anger I can sit down and write a comprehensive answer as to what made me angry. Daniel cannot. He doesn't even always know why he's upset, he just knows he is. Often when you ask him what made him angry he'll describe what he did in reaction to the anger, like, "I got in her face" still not understanding what made him angry to get in her face. We work on this every single day. For YEARS now we journal every night. Every night we write down 1. what made him happy, 2. how he helped out during the day and 3. what made him angry. I would say 8 out of 10 times he tells us his reaction to his anger and then we help him work through to the CAUSE of the anger. Sometimes he even tries the "I wasn't angry" which is true part of the time, the other times he was and is trying to avoid it. We then have the opportunity to talk about what he could have done differently, if anything. This isn't my idea, we do it for his private speech teacher. He's come a long way. In the beginning he would RELIVE the incident like it was happening anew, every single time. Yelling and crying. He doesn't do that anymore and sometimes he can tell us the why. We are making progress, but we aren't there yet.

Post Halloween Madness

2009-11-05T08:44:00.005-05:00

After an insane week of days off, Halloween festivities around every corner and lots and lots of chocolate, Monday began a new week. A new and very very noisy week. Actually this noisiness began on Sunday. Daniel was so incredibly LOUD. His 'normal' perseverating and chatting and singing but times 10 in volume. . . at least. I have a tendency to get sensory overloaded. Most adults wouldn't be able to name that for what it is, but having Daniel in my life has helped me understand some of my own "quirks". Too much noise and sound and my insides start to tighten, I'm clenching my jaw, my shoulders are rising up, until that sensory glass runneth over and I'm DONE. Sunday I was DONE on many occasions. I told him on at least twice that one of us had to leave the room because mom could not take the noise, noise, noise! (is that the Grinch or Cat in the Hat?) Anyway, he was very upset with me and my lack of being able to tolerate his loudness. Nice that he wanted to be at my side, not nice that he couldn't lower his voice to anywhere near a normal decibel level.

Fast forward to Monday. The loudness continued. He, apparently, came into school "singing" at the TOP OF HIS LUNGS and from there it got nothing but louder. Soon he was in tears because people kept trying to get him to take breaks, take a walk, get a drink, all the things they are SUPPOSED to do when he can't pull himself together. This just pissed him off further. They called me, not to complain, but for advise. All I could do is say, "I know, I know, I saw it yesterday". Group was pretty good Monday night. She has a new strategy for when Daniel gets upset because kids are "acting silly" or "not following the rules" and he tries to control the room....she simply wrote on a piece of paper something like, "when kids are being silly or not following the rules, Daniel will stay quiet and let the teacher tell them what they should be doing" or something like that. As soon as Daniel would start to point something out, she'd point at the paper, would not say anything, just point, and HE STOPPED. Every time. I have, of course passed this on to school.

Then Tuesday morning I was at Zachary's bus stop. My cell rang. It was the school. This is bad news as school hadn't even started at that point. Sigh. I answered (tentatively and really wanting to ignore the damn thing) only to immediately here in the background Daniel screaming at the top of his lungs. These poor people were beside themselves. I told her to ask Daniel to get on the phone with me...the response was NNNNNNNNNOOOOOOOOOOOOOOOOOO!!!! O.K......

They had gone through the first, what? 8 weeks of school, and not seen this ever. All of a sudden he flipped. I listed strategies, reminded them of everything and nothing was working. I found myself counting the days until his para was back from her Family Medical Leave. November 30. That is a LONG time away. At least from this chair. Probably not so much for her. But really it's all about me...isn't it? No? Well, it should be ;) Anyway, after school the note said he was "aggressively leaning into his para pro (who has been wonderful by the way), not touching her, but in a threatening manner". I, unfortunately, know EXACTLY what they are saying. This is what he does when he's really mad at you. He may not be able to verbalize it, or the why, but you can't get much more of a non verbal communication than that can you? I wrote the teacher an email back explaining this saying, I don't know what he's mad at, but he is clearly, telling her to back off. If she is following on breaks etc, she must stop. He needs space and is clearly communicating that. I followed with, I hope you don't turn around and talk about the nutty woman in EL, but. . . . it's been a full moon, can we give him space and see if this passes on its own? Yes, I was suggesting that the moon was contributing to the insane and noisy behavior of my son.

Her response was, omg I didn't realize it's a full moon, ok lets see...That night, I kid you not, Daniel was getting into bed. He turned to me, smiled his beautiful and slightly sneaky smile and said, "I love a full moon". Seriously. I should have said, what do you like Daniel, the fact that you let everything out and are basically HOWLING AT THE MOON for two days? But I just smiled and said, "I know." It was almost like, "that was the end of it, I've been acting crazy but now its over." And you know what? The next day it was done. Over. Gone. Back to normal. As if nothing happened. I received an email from school saying,"well, it's the same Daniel today as the rest of the year." I knew it was going to be over after he said that. I don't have a good ending to this except, I've seen in the past the moon having an affect on him. But this was nuts and he pretty much told me it was the end as if he could feel the pull was gone. It's really an amazing phenomenon. I'd like to hear how you or your kids have reacted in the past to the full moons. It's fascinating. And I'm glad it's over....for this month.