Autism Watch: 2007

Posts Tagged ‘migraines

Sometimes, when things are good, we can go days without really thinking about it. The word “autism” doesn’t even enter my head on a level where I have to focus on it, because so many days, that’s just how BB is. I don’t see him as autistic or see his odd behaviors or problems as autism, it’s just BB. But some days, it hits you. Bam, the kick in the stomach that reminds you: my son has a disability.

Autism.

It hits you hard and you almost have to remind yourself to take a breath, because you hadn’t thought about it that way in a while. Maybe it’s just me – maybe I compartmentalize and some might say that’s a bad thing. Some might say “Well, how bad can he be if you are able to forget,” so let me clarify — it’s not that I forget, it’s just that I see him as his own person, just the way he is, and I’m so used to his eccentricities, his sensory problems, his OCD behaviors and the meltdowns that I don’t focus on him being a child with autism. I just see him as a child who needs my love and attention in some different ways.

Yesterday was one of those days. On the heels of last week, when BB refused to go into the school in the morning, and he was a stressed, anxiety-ridden little boy who visibly shook when we mentioned school over the weekend, I didn’t figure yesterday morning would go easily, but I also didn’t expect it to go like it did.

Long story as short as possible, we went to school, with the homework the assistant principal had given him, basically a list of all the things that bothered him, things he wanted to discuss and have fixed. It was a well-written list, big words, proper grammar and spelling, but it still wasn’t pretty. He was candid, almost brutal, in his explanation. He doesn’t like it when someone touches him unasked, so he didn’t hesitate to name names of those who didn’t abide by this rule. (But I have to say, if you have a child with autism in your class, you should also know enough to not just touch them unbidden, so I didn’t feel sorry for those whose names were listed. If you haven’t taken time to learn about autism, knowing you have a child with it in your class, you aren’t being fair to yourself or the student.)

BB handed the list to the AP, and turns to head back to the car. Uhm, no, baby, you have to go into the building. All heck broke loose from there. Reminding him, as quietly as possible, that he wants to be seen like everyone else, so falling to the ground and trying to run away will make him stand out didn’t work. Four staff/administrators later, we were still there. Cars had all gone, and this was when it was a blessing that I have no friends here and neither does he. (Small towns? Not always friendly to newcomers beyond the hello, how are you. And if you’re different? The stares and actual “wow, I’ve never seen someone like you before” comments abound. My daughter’s blue streaks in her hair for Autism Awareness month? Mouths would drop open.) Because of our lack of attachment to anyone here, we were just another group of people on the sidewalk thankfully.

However, when we were still there 45 minutes later, BB in the car after us having given up, my stomach was in knots. My left arm had no feeling, as I’d used it mostly to hold him to me rather than running away. The AP doesn’t believe in dragging children into class, nor do I. If he’s going to be miserable outside, what happens inside? Is it fair to him, and if it escalates, we put him into the position where he could get even more in trouble. So back to the car he went.

This afternoon, we have an emergency IEP. Plans for what to do to make him willing to at least go to school for a modified schedule, for social purposes mainly, will be formulated. We’ll be discussing things that will motivate him to go into school, even if it’s computer-based projects or helping someone out. Then we need to work on friends. How to get him to make friends without the adult intrusion he doesn’t want?

Then we get to discuss ABA and social skills services. We aren’t signing anything that doesn’t include both in writing. Now that they’ve seen the good, the bad, and the ugly, they are aware that a lot goes on behind the surface. They realize that while he may look ‘normal’ quite often, there’s a whole new world in his brain. His thoughts and feelings aren’t obvious, but they matter, and we have to not only help him adapt, but we need to teach him to adapt, and make some adaptations for him as well. Medication is a consideration, but if the problem is mostly happening at school, I’m hesitant to biochemically change his behaviors and/or personality when there’s other options to approach first.

Think happy thoughts for us. Not only is our house not sold yet — four weeks and not one showing — which makes me discouraged and sad, being stuck in a place where we have no friends and don’t want to live anymore (for new readers, we’ve only lived here about 14 mths and we have no close family here either) but now our son is showing signs of major regression and I’m just seconds away from developing a tic again in my eye. It’s not about me, and I don’t want to make it about me, but we could really use a break. BB needs help, and he needs love and acceptance. We can shower him with love, but I can’t buy him the acceptance and the help relies on others.

I hate saying “my son has a disability” but yesterday’s issues really drove it home. Whatever else is going on in our life (such as planning a move that we’d hoped to still make this year) can’t be the focus. BB has to be the focus. Kind of a kick in the pants, and maybe we needed it.

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Recently, our school told us that BB was behaving oddly. Blurting out silly answers, being goofy and appearing to try these new tactics in order to fit in. I attended a class with him and watched, and sure enough, he was not being the BB I know from home. On the way home, after he vented on how he was missing his computer time, I asked him why he felt he needed to do that. A sad discussion followed.

Mom, I do it because, well, remember back home in CA? I was picked on there. Teased. Laughed at. No one did anything. People laughed at my hats and my glasses and I learned that the only way to not get teased was to not be myself. So now that I’m here, I’m going to be what doesn’t get me laughed at.

Sniff.

I understood, but assured him that it was fine to be himself. Wear what you want. Have your own style. Speak like BB, not ‘the cool kid.’ It seemed to work.

Fast-forward to yesterday. He’d decided to wear a cape to school, one from a local gaming place where you get in costume. Kids his age are in there all the time, wearing the cape. I realized it was a stretch, a risk, and that someone might tease, but I assured him that if he was going to do it, be prepared to ignore it. (And to realize that most kids who laugh at it probably do so because they’ve not been there and some wish they did. Let’s be real, these are kids we’re talking about and I know adults that have teased me about my obsession with Nascar and then reveal to me later they just wish they could attend as often as we did.)

Anyway, I picked him up amongst a flurry of phonecalls from various school staff. Yes, the kids laughed at his cape. No, they weren’t stopped. Yes, he was embarrassed. No, it wasn’t against dress code. Yes, they band-aided the problem by making him put it away instead of using it as an educational opportunity. The day got worse from there, and ended with him getting kicked in a private place by an unhappy classmate at the end of the day. Had that been BB, we’d have received a phonecall and it would have been taken uber-seriously; the nurse was very involved, and really good about it all, but I’d best get confirmation that the child was dealt with. They’re all over BB about ‘dress code violation’ and every other little thing, I expect them to be fair. They appear to be, but I still want proof. I’m still mom, after all.

So was being true to himself successful? Not in this case, sad as it may be. However, kids and adults have to learn that you are judged by your attire, right or wrong. If I went shopping today in my Aeropostale Christmas jammy pants and a knee-length purple tiger print hoody (both of which I own, btw, don’t hate) I’d get some stares, too. Some immature adults would probably audibly snicker. (I live in the south, where holey clothes and white t-shirts with no bra are acceptable, but there’s still a level at which you’ll get laughed at…it’s just a level that’s impossible to explain unless you lived here. I do promise you though, I do not leave the house in anywhere an outfit such as anything described above.) He does need to realize that there are some things you just need to watch out for, but it’s a hard thing to teach an autistic child that you can be yourself, have your true personality, but immaterial things like clothing and hats will be judged. And quite honestly, not sure I get it either, with all the “beauty’s on the inside” garbage that’s spewed all over the airwaves and magazines with thin beautiful people on the covers yet judgment happens 24/7 everywhere. For a literal child, it’s a minefield to navigate.

He’s at school today. Didn’t want to go, he was embarrassed yesterday and unhappy that he had to take off his favorite shirt for the class photo (still haven’t gotten an answer as to why a plaid flannel shirt on a cold day was unacceptable) but I’m hoping he has a better day. Sometimes people just need to lay off. Focus on the important things. Don’t nitpick. If he’s already been asked to remove a cape, drop it, let it be done. Don’t haul him into an office for more of a reason, especially a questionable one, and if he has to go to the bathroom during reading, let the poor kid go. You can’t fight every battle, and if all your battles are tiny ones, the real, true big issues are going to be lost because you can’t get through.

There are days that homeschooling is more and more appealing. Do I want to do it? No, but ridiculous attendance laws forcing a medically disabled child (he also has migraines) to go to school despite having a doctor’s note saying he is on medication and has this diagnosis, are harassment at best. Spending so much time daily trying to fix problems created by going to school, I could teach him in that time. Again, do I want to? No. Is it a last-resort? Definitely, but I’m not going to count it out if we can’t find a way for him to be happy while still being productively educated. I like his teacher, and I like his school, but school isn’t life, it’s just one part of it, and if school puts him in a bad mood, everything and everyone around him is affected.

Next blog entry I’ll update on the neurology appointment. New prescriptions, new headache diary and a list of things to avoid until a foll0w-up appointment to see if it works. Wish us luck.


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