Monday, September 29, 2008

I'm going to ride a bike, right now! Part I

I've been trying to figure out how to write this blog. I have finally decided it has to be in a series. So this will be part one. . . .

The summer of 2007 we were still working on refining Zachary's bike skills. He was 7 then. Riding a bike was something he was unsure of. He is very cautious. He is not a kid who enjoys "danger". (this totally comes from me) A few years earlier we saw a kid learning to ride and he stopped himself by falling ONTO THE GRASS. Zachary turned and announced to me, "I will never ride a bike if that's what you do." Good grief. So, needless to say, he wasn't interested in learning until later than most kids. His older brother wasn't doing it. There wasn't much motivation.

We had finally begun the process of learning to ride a two wheeler in 2006 and had just started getting somewhere when the season ended. We are in Michigan so it isn't like you have all year to ride a bike. So when summer rolled around again in 2008 we started back on it. Since Zachary wasn't determined to ride, it took a while. Not to mention the fact that it drove Daniel crazy whenever we would practice. He HATED us going back and forth, up and down the street. I think it was sort of pointless to him. He would always ask, "where is Zachary going?" and really the answer is "nowhere" he is just riding, practicing. I knew this would drive him crazy. I understand. He needs there to be a purpose. You have to be going somewhere? Don't you? So inevitably Daniel would be standing out front, upset because Zachary was simply riding up and down the street. This went on for years. It started with training wheels and then continued into the two wheeler. Then when Todd and I are suddenly running behind him. Forget about it. He was officially peeved.

Then that magical day came and Zachary was off and, well, biking. He was getting pretty stable so I asked him one day if he wanted to go on a ride around the neighborhood. He agreed. I got on a bike and we went for a very pleasant ride around the neighborhood. I thought this would be helpful for Zachary to not have his brother yelling in the driveway while he was trying to practice, so we went off, out of site. My husband, Todd, stayed home with Daniel for those of you who think I left Daniel in the driveway alone!

So Zachary and I had a lovely ride. He was VERY proud of himself. As he should have been. That's a big accomplishment after all! After that day you just don't go back. Once you learn you always know how. Fabulous!

I will never forget coming back from that ride. Daniel was sitting smack dab in the middle of the driveway. He had that determined, sort of ticked off look that he gets. I was hoping he was there to greet us?!? No, not quite. When we rode in Daniel stood up and stomped his way down the driveway and announced, "I am going to ride a bike, right now." Ok, let me give you all some perspective. We had been encouraging Daniel to ride a bike for, oh, 5 years at this point and he had ZERO interest. This is how it goes with him. Feast or famine. He saw his little brother do it (Daniel was 10 at this point and Zachary 7) and he thinks, wait a minute, I want to do that. Even though Daniel has autism he knows when it isn't "right" that Zachary is doing something like this before him. He really thought he was going to get on a two wheel bike right then and ride off into the sunset and that would be it. Had he not noticed the year or so that Zachary had been practicing and trying to learn and he was yelling in the driveway? He didn't connect that all of that lead up to this night. He thought you could just get on and go. . . I felt like I was in sort of dream, some alternative universe?! And by gosh, he tried to get on a bike! I ran inside to get Todd, knowing there was no way I could hold him up and a bike. He weighed over 100 pounds at the time! Then we need a helmet. . . is there one to fit him?! We are scrambling around while he is getting more and more annoyed that you were not somehow prepared for this giant shift to occur at any moment. . .

Todd came out and we tried to steady him. No surprise here, it just wasn't working. He was tipping and unstable and he cried and yelled and we all went inside. This was the end to a lovely first long bike ride with my seven year old. As usual, it went from an achievement for Zachary and turned into me realizing that my new priority was going to be figuring out how in the world we would get Daniel on a bike. The focus immediately shifts to Daniel. He finally had the will, and as usual I had to find the way.

Tuesday, September 23, 2008

Team Daniel

Don't you love it? It sounds so positive and upbeat! A few years ago Daniel's resource room teacher at his old school started calling our monthly meetings Team Daniel meetings. The team is the rather large group of people who get together to basically, get Daniel through his education. A long time ago I requested that we have monthly meetings to keep in touch. This is written in my IEP. I found that while a lot of these people were in the same building, getting together for 30-40 minutes once a month helped keep everyone on the same page and we could share strategies with each other. I'm sure the school district isn't thrilled with the fact that we request these meetings, but I've never had any complaints. . . to my face anyway! Our team consists of my husband Todd and I, the resource room teacher, the general ed teachers, para pro, speech teacher, AI (autistic impaired)consultant and social worker. (it used to be OT also, but he "graduated" from her last year) Depending on what's going on the principal may be there, or a "specials"teacher like art or music. I find the meetings to be very helpful. They keep me updated. We can make decisions about where Daniel's education is headed. It's all good right? Well most of the time.

There have been times when I've left these meetings feeling very frustrated. Times like when I get the feeling that the majority of the people there don't understand Daniel at all. This is how I felt most of last year. I just never felt that anyone could understand his learning style. Or that they could figure out how to retrieve that information he has hidden under lock and key in that head of his. I don't know if it's true but I always had that "feeling". If you are the parent of a child with special needs you know that feeling. The one when people look at you with the sad smile one their faces and they are thinking, "she just doesn't understand his disability, she wants too much" maybe even, "she's in denial". Whatever. I know different. I know that we push. We don't push to frustration, but we push because Daniel always always seems to rise to the occasion. It never fails to surprise me. As soon as you get together to talk about a problem he seems to solve it himself. It's like he's messing with you!

Yesterday we had our first meeting of the year. We gave ourselves some time for the new teachers to get to know him and see where he is academically. Now I need to say this. . . he has AMAZING general ed teachers this year. They are general ed, yet they understand autism. They have had lots of training. It's unbelievable. I am so going to be spoiled after this year. Most of what we have been talking about is academic for him. He sort of floats on the edge of everything. He learns, but slowly. It's all just catching up with us. He is in 6th grade now. The work comes hard and fast. He learns at school and we have to sit through all of his homework and reteach a lot of it to him. We have to "model" some things. Especially writing. But we have been fighting switching to modified work. Modified means the child is not meeting all expectations of the curriculum. They will not learn all of the points laid out that a 6th grader (or whatever) has to meet. Accommodated means they are learning the same things, just in a different way. It may be presented differently, they may be given more time, have someone write the answers the child gives them. Lots of things. Social Studies went to modified in 4th grade. The higher level thinking that is required, he hasn't been able to do. The vocab is tough. He has significant speech and language impairment. I gave up beating my head against the wall in social studies a long time ago. It's not that he doesn't do it. He does, on a level he can do. Some of it is modeled. Meaning we show him how to do it. He learns from that too. He takes in a lot.

Spelling is accommodated. He is a great speller. It's sort of amazing. He loves words. Always has. Writing was modified last year. Then there is math. Math has been the great divide. We got through last year with it being accommodated. But all year, as they sped up and sped up and the grades started dropping, I knew it was slipping away. Oh, I put up a great fight, but I knew it was gone. We have been trying to keep him on the graduation path. It may be unrealistic, but who knows. He tends to surprise everyone like I said.

So back to our first team Daniel. I finally let it go. We all agreed. He IS learning the math. He just needs more time with each unit. Maybe twice as much time. That's an accommodation. But if you do it on each unit you'll never get through all of the curriculum. It's tough. Todd and I decided that we would rather he learn all of half of it, not none of all of it. Understand? If we keep working on a unit and he really learns it. He'll learn it forever. That's how he is. It is something I've been fighting but I could see the writing on the wall. It was time. It was out of his grasp. So everyone else is moving on and he is reviewing the new information he's been working on the past few weeks. And you know what? He's doing it on his own. Independent (that's a big buzz word) He's confident, he's proud. And I have to say. I'm sort of relieved. I thought I'd be upset that we had to let that go. But I'm not. I will keep on things and make sure he is always learning up to his highest potential. Team Daniel all agreed.

The teachers commented on how productive our 30 minute meeting was (we also agreed on how to go about his new English Language Arts lesson). It's amazing that when you are comfortable with the people you are working with, when you are confident in their understanding of your child's abilities how much you can let go and how high you can soar.

Sunday, September 21, 2008

Still Creeped

My husband has just about had it with me. I can't get over the lice thing. Granted, him rolling his eyes at me and shaking his head does not HELP me in any way. It does, however, point out that I am being slightly irrational. OK maybe more than slightly. I can't help it though. There is the rational part of my brain that knows we are past this. Then there is the emotional side that cannot move on. I told him I was going to write this blog. He said he should write it about me. . . ok bring on the comments Todd.

In my defense I was improving, ever so slightly. I was still using the nit combs, checking hair etc. But the panic was subsiding. Then last Tuesday something happened. I know it was Tuesday because Todd was at a City Council meeting that evening. Daniel was outside swinging, Zachary was playing somewhere in the house. I was finally sitting down for a bit. Daniel comes in and sits by me. Then it happened. I saw something scurry across his head. I grabbed it, killed it. He said "is it lice?" I said, "no Daniel I don't think so". "You probably had a little spider on your head from outside". The apple tree branches are practically laying on top of the slide, so he has to go through it to get up the slide. I was totally playing it cool. But my insides? I can't explain the panic that I felt. I brought him upstairs, checked out his head. Found nothing. I also know from killing many of these suckers, that lice are not that easy to kill. This bug was gone in a split second. I sent Daniel on his way. But I was one half of a step from dropping into some deep abyss that I wouldn't be able to find my way out of. Total and complete panic. It was very close to a terrible panic attack I had once. It was that bad. Todd came home earlier than normal (thank goodness) and I told him what happened. He didn't seem worried. I said Daniel had to have a shower and check his hair again. I asked (ok begged) Todd to do it because I was so paralyzed with fear I literally couldn't move. He very patiently did as I asked. He found nothing.

Todd say, "Are you ok now?"


It started me going all over again. I was convinced we all had lice again. Friday night Todd had poker here and I hid in my room with my computer and treated myself for lice, again. It has been weeks since any lice was on me, but I spent a good hour of my night combing Cetaphyl through my hair and playing word twist with my cousin on facebook. Lunatic, I keep thinking. But I can't stop! I still have all of the items bagged up in lice time out in my dining room. All the things that were too big to wash, or you couldn't. They are supposed to be bagged for 2 weeks. We are way beyond that. I talked to Beckie about possibly needing to medicate myself. She is my cousin, who has a masters in social work. If she billed me for the hours spent talking me through stuff on the phone I would have to sign my house over to her! What a gal. She seemed to think that since at some point I was feeling better, I didn't need to medicate myself. AND that it was understandable that seeing that bug on my autistic son's head, and knowing what that could mean for HIM was enough to set me off again. Ok I'm feeling a bit better.

Then today I get a phone call, from Jacob's mom 2 doors down. Jacob has lice. The first notification from someone who most likely caught it from us. Zachary and Jacob played at the park on Friday. They found it Friday. Ok maybe I'm not done.

Friday, September 19, 2008

The Big Zoo Lesson

On Wednesday I went to the Potter Park Zoo with Zachary's 3rd grade class. He is spending the entire week there! They get to study one animal in depth as well as learn many other fascinating things. He is LOVING it. I was lucky because we went early so we could be a part of the penguin feeding! It was so fun and interesting. We even got to go behind the exhibit and see a few penguins very very up close. Here is zoo keeper Dennis feeding the penguins their breakfast! Here is a photo of Zachary (in the center) with Tommy (left) and Jonathon (right) by the penguin exhibit.

We had an hour of observation at the lemurs. What a treat!!! This day we were focusing on habitats. As soon as we arrived they came out of hiding and walked over to the corner of the exhibit with sunshine. They would sit with their legs out in front and hold their arms out to the side soaking up the sun. One child said it looked like yoga. I said they were doing their sun salutations! They loved this idea. They did look so calm and happy. I feel that way too sitting in the beautiful sunshine soaking it up. A few of the zoo staff stopped by and were intrigued. They stopped and took pictures too. So it can't be that common? This one in the picture is checking me out. The girls loved that the females make all of the decisions for their group and are matriarchs. The females are in charge. . . but really, aren't we always?
Here are a few of the kids doing their best lemur impression and their own sun salutations. Regina (left) Zachary (middle) and Cora (right). We really lucked out that day. It was glorious. As you can tell by the lemurs, and the kids!

Thursday morning Zachary was going off to school and he said, "mom, yesterday was the best day at the zoo yet." "We got to watch the penguins get fed, the lemurs were active and the best part is you were there too". Thanks Zachary. I had fun with you too! What a sweet kid.

Monday, September 15, 2008

The first chilly day of the school year

Well today was the day. The day I dread every year. The day that it is 50 degrees in the a.m. with a high of only 63 degrees. Now I will start off on a positive note and say things are millions and millions of times easier than they used to be. It used to literally take me WEEKS of screaming to get Daniel to make the inevitable switch from shorts to pants. It was a long and painful process and usually, when we were finally there we would have a rouge 80 degree day, then he would scream because he didn't want to wear shorts. It was, in a word, exhausting.

But things have improved greatly. More than greatly. This morning I was on the way to the bus stop with Zachary. Our schedule is I tell Daniel I'm going to the bus stop. This is when he usually gets off of the computer, goes upstairs, gets dressed, makes his bed, brushes his teeth and then goes back to relaxing until it's time for school. Today I rather breezily said, "oh, by the way, it will be cooler today, you might want to wear pants and a short sleeved shirt". Daniel says, "ok". Then I RAN out the door before he could change his mind. (Wimp)

I came back rather quickly from the bus stop. (sometimes I stay and chat for 5 or 10 minutes) because I thought, "I wonder how his pants will fit him?" I never go out school shopping in August when everyone else does. It's always 85 degrees and I can't seem to get the kids to try on their clothes (ok, I mean Daniel) and I would rather sort through them when they are at school. Well, between the lice week, my friends father dying and organizing things for her, and volunteering, I hadn't gotten around to it yet. So today snuck up on me. So I get home and sneak upstairs and Daniel is sitting on his bed with pants in his hands. He is trying to put them on and they are literally stuck on his thighs. "I can't get them on". So I start going through pants. About 12 pair of them. All the same. Can't get the on. He's a bit upset, but not really, I can see him teetering on the edge. I finally pull out a pair of Gap sweatpants that used to be rather large. Jackpot! Off he goes.

So what did I do today? Shop. Rather unsuccessfully I might add. It's not easy finding him pants. He needs "Husky". Daniel is not overweight, at all. In fact I'm always told he is in perfect proportion. He is wide and solid as a brick wall. He's 5'4". So in other words, he needs at least a 16 husky. Did I mention he can't button? So in addition to a husky size 16 they can't have buttons. So I went to Sears where they now carry Lands End. For those who need a tip. Lands End has the perfect pants for kids on the spectrum. They look good, they hold up really well, they have elastic waist and they come in slim, regular and husky. Something for everyone!! Well, Sears didn't have any husky. I went to Gap, neither did they. Children's Place was empty practically. I came home, went online and spent over $300 at Land's They'll be here in about 4 days. Hmmmmm. maybe I SHOULD have done this in August.

Sunday, September 14, 2008

Food Glorious Food

For a parent with a child on the autism spectrum you only have to say the word "food" and that parent will start twitching. It is a source of torture. What do they say (whoever they are)? That for a "regular" kid you have to present a new food to them, I don't remember, 50 times before they may try it? OK maybe not that long. But my perspective on this topic went out the window a loooonnngg time ago. Whatever the number is you must have to multiply it by 100, at least, for a child with autism. Daniel's food repertoire is very limited. For those who are earlier in this process of autism, the only thing I can say is keep trying. Daniel turns 12 next month (what?!?) and in the past few years his vegetable intake has increased dramatically. It took only what, 8 or 9 YEARS. But it happened. That sums up the lives of people living with autism. Slow but sure, try try again. It all fits.

What I'm getting to is pizza. Ahhhh pizza. It's a food that I could eat, pretty much at every meal and be perfectly happy. Maybe 100 pounds heavier, but happy. I don't get sick of it. Ever. Now Daniel has a thing about cheese. He has since about age 3. That is when a lot of his food habits changed. Dramatically. But at a young age I made him macaroni and cheese. Every kid likes that right? I put it in front of him and he started gagging. Immediately. I quickly swept it away and never did that again. We don't eat it either, but I was trying to find SOMETHING he'd eat. That is sort of opposite most kids with autism. A lot of them that I've encountered live on mac and cheese. Not us.

I have been giving Daniel "my crusts" when I eat pizza for a long time. He loves the bread. He would inspect it very carefully to make sure there was nothing that resembled cheese on that crust. Then eat it. Well, last week at our neighborhood picnic someone brought 2 pizzas. I grabbed him a piece and put it on his plate. Try try again, right? All he had eaten thus far was cantaloupe, watermelon, chocolate chip cookies and brownies. He won't eat hot dogs, which were being grilled by a neighbor. He did at one point, but that is long gone. I handed him his plate and walked away. I came back to find out he ate it. The whole thing! Now I know he would never eat a pizza that was really cheesy. Those long strings of cheese would send him running from the room. But a cheap $5 pizza that barely has any cheese. He seems to be accepting. He had pizza for lunch yesterday. He asked for it again today. He is trying to eat it right now as a I type but he is barely getting it down. It doesn't seem to be going well. He keeps saying "it's just dough". Trying to convince himself there is no cheese. I haven't said there is or there isn't. I just smile. I am so desperate for an alternative. I don't even care if it is healthy.

Currently he eats; a plain hamburger, a brat, or plain waffles (a very specific kind you understand?) Granted he may have a variety of fruits with it. Or he'll eat green beans, broccoli, carrots, corn on the cob, a "salad" (it is actually a bowl of plain romaine lettuce). I try to balance the fattening foods with the good ones. As much as possible. But pizza is accessible. If you are on vacation, you can find it places. It would give us some small amount of flexibility. At least with him. I still have Zachary who is allergic to milk and eggs. Try feeding him at a restaurant!

Sunday, September 7, 2008

Bus Stop

I thought I'd show evidence of Zachary's new haircut. I didn't do too badly considering it was dark and we were outside on our deck (not to mention in a panic). He's happy with it so that's a plus!
Our bus stop is awesome. We are lucky enough to get dropped off at our neighborhood's park. This year there are a ton of kids. Pictured to the right in order are Gavin (2nd grade), Zachary (3rd grade) Jacob (Kindergarten). Don't they all look so happy? It's a great day in the neighborhood. Especially if everyone else stays lice free. . . . . .. hope, hope, hope, pray, pray, pray.

Friday, September 5, 2008

Creepy Crawlies

Well, it finally happened. After years of dodging bullet after bullet, the Sneathen's finally came down with the L word. Only parents of elementary school kids, would think of the the L word as the dreaded lice. Zachary, my poor unfortunate child, REALLY came down with it. I thought I was diligently checking since a neighbor's family had it. Ok, maybe not diligently, but I was checking. Todd said he was too. Zach was itching some, yes. But you would think with what we eventually found in there he would have been screaming from the rooftops. So Labor Day night after his shower I was drying his hair and looked and saw actual bugs crawling around. My body and brain immediately went into overdrive and started itching. Now when you are a hypocondriac like myself as soon as someone says the word lice I am scratching my head and asking Todd to check me.

My next thought was that we had just been to two separate houses on two days with parties full of kids. Oye. I am so kicked out of the 'hood! Plus Zach had spent most of the last week a boys house 3 doors down who was starting his first day of kindergarten the next day. I pretty much started sobbing just thinking of calling these people.

But back to poor Zachary. We ran out to the drugstore to buy a lice treatment immediately. (again, by we I mean Todd). So after washing my 8 year olds head in a neuro toxin (not easy to do when your other child is not neurotypical), picking through his hair for hours and starting the endless process of washing everything in your house in hot water and drying it within an inch of it's life. By then it was about 1:30 am. Todd fell asleep and so did I for exactly 90 minutes. Then I woke up to stomach cramps (due to complete panic) and was up the rest of the night praying that Daniel wouldn't get it. How do you treat someone who will barely let you wash his hair? Of course by this time I was worked into a total frenzy thinking I was covered in bugs. Zachary was upset because he would be missing the 1st day of 3rd grade. Daniel was wonderfully oblivious to the whole thing.

Tuesday I was calling my Dr. trying to get my head checked and get a prescription for Ovide, recommended by my neighbors who used it and swore by it. But talking about neuro toxin! So by Tuesday night, after spending about 5 hours thus far nit picking (now I know where that saying comes from) I was still finding very tiny newly hatched live lice 24 hours after initial treatment. NOT GOOD. So I said "Zach, how do you feel about a hair cut?", his response, "whatever it takes mom". So my child who has the most beautiful hair on a boy. It gets auburn highlights in the summer, he had a great cut. I brought him onto our deck at 9:00pm, in the dark, with one spotlight on him, and proceeded to cut. All the live lice were in the longest part of his hair. It had to be done. This is one of my best decisions to date. After another exhausting day I called the pediatrician (for the second time) and chatted (ok begged) for something else to do. My neighbor Alice had a suggestion of the "Cetaphyl treatment". Whatever, I'll try it. I got the supplies, went back to the deck (it's messy) and got to work. It's quite a treatment, but it is not a neuro toxin and if you try it, follow each and every direction and don't think, oh I don't need to do that, I'll just massage it in. Nope do it all. see We went from, I am not exaggerating, maybe a thousand eggs, to about 20 that night and no live lice. From Cetaphyl. It was a miracle. We are still checking him twice a day and using the nit comb. As well as checking Daniel with the comb every day. I did give Daniel the otc treatment, but I don't think it works. I was just impressed with myself that I got him to use the shampoo! Todd used the otc and the prescription. Yesterday combing with the nit comb I found some in my hair. (after the Dr said I had none). I used the prescription on me. You leave it on for 8 or more hours. So I'm walking around looking like I don't know what and had to go to the school. So sad.

So here I am, 4 days later, my washer and dryer have never stopped. I am still thinking of things I need to clean. Everyone's at school, but we are still picking through hair twice a day. What a way to start the school year. None of the neighbors have found anything yet. Not that I've heard of anyway. But then again, maybe no one is talking to me!