Thursday, December 15, 2011

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

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.

Friday, December 9, 2011

A Day in the Life

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. 

Saturday, December 3, 2011

One Small Voice

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. 

Sunday, November 27, 2011

The Muppets

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.

Tuesday, November 22, 2011


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.

Monday, November 14, 2011

Autism and Church Part II

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. 

Sunday, November 13, 2011

Autism and Church

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. . .

Thursday, November 10, 2011

Gut Wrenching

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.

Thursday, October 20, 2011

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

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 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.....

Thursday, October 13, 2011

Fair Practices?

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. 

Wednesday, October 12, 2011

A Fulfilling Life

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.

Monday, September 19, 2011

Hakuna Matata

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....