Autism Watch: 2007

Posts Tagged ‘autism spectrum

One thing that strikes me as odd, as perplexing and disturbing, is that despite how we parents of autistic children want and expect tolerance everywhere — school, restaurants, airplanes, churches, anywhere — how quickly we turn when our child or our child’s class has a difficult experience with another special needs child.

I use the word “we” obviously as a generality, not a blanket statement because this doesn’t apply to everyone, but “we,” the parents of autistic children, are our own community. Within that community, we share our stories of school problems, insurance issues, health dilemmas. We seek support and information, and we commiserate, truly commiserate, with others within our community. But, apparently that stops when another special needs child bites our kid…pushes him on the playground…disrupts his studies one day in class…says something mean, and so on.

Now, I’m not saying that we should put up with anything that other special needs children do, but how can we rant about what a neurotypical (aka non-autistic) child does to our autistic child, when we do it ourselves? How can we expect others to be more tolerant if we exemplify “do as I say, not as I do?” Doesn’t real tolerance mean understanding that the other special needs child needs that same compassion we want when it’s our child causing the problem?

I’ve been on both sides of this. I’ve been the parent of the child treated badly by a neurotypical kid, the parent of the child punched by another autistic child, and the parent of the child biting another child. (And the child he bit? Autistic as well…but to be an equal opportunity problem, he has punched a non-autistic child, too.) I know how frustrating it is when you have to fix your child’s boo-boos that were caused by someone else. And I know how frustrating it is when you have the school call you to tell you your child hit someone else, and the parent is unhappy. Neither side is a pleasure. Maybe having been on both sides has helped me to understand it more — maybe it takes having your child be the problem at least once to truly get what it is like, the mix of emotions that you feel, the need to protect your child but the knowledge that he hurt another child, or hurt the child’s feelings.

I met a parent recently who wanted to call the police because a child in her daughter’s special-needs classroom bit her daughter, a couple of days after the child pushed her daughter. She was angry, and wanted something done. I didn’t blame her, I understood the need for a quick and safe resolution. But it also needed to be fair. And fair to both. Sure, the other child shouldn’t bite and shove, but where was the teacher? Why wasn’t there supervision? And why isn’t that supervisor, or the person who failed to secure it, the one in trouble? And why call the police? Did I mention that this child was 8? People don’t realize what calling the police does. It mars the child’s future, it leaves a nasty spot on his/her record, and that of the parents. And autism is widely misunderstood, so the special needs child who clearly needs more supervision and behavior training gets to learn to deal with the police, seeing his parents stressed, and all the legal hoopla that it brings. Who in the world wants to bring that onto another family?

In short, if we’re going to ask the world to accept our children, we have to be ready to accept our children.

Mine, yours, all.

If we want the general public to tolerate our children’s behaviors, we can’t be the pot calling the kettle black…or calling the police or making a scene with another family because their child displays behaviors due to their disability. If we want fairness, we have to display fairness in return. It only works when we all want the best for all our children, not only when it suits us.

If you’re faced with a situation where another special needs child hurts your child or upsets your child’s classroom, remember what it feels like. Remember that support is critical. Remember that this family may or may not have the support or knoweldge they should have, that you may have. Be a help, and in the spirit of a resolution that works for all, don’t take it out on their child. In the wrong situation, it could be your own. What kind of response would you want then?

I think I mentioned earlier this week that I was worried about another year of fighting to get ds to go to school…to get up and leave the house on time, fully dressed (which means shoes)…and listening to him each night as he shares stories of how he is wronged at school or what frustrates him or who takes up too much of his desk space or who is a ‘brat.’ (And ‘brat’ is someone that continually upsets him in a way that appears intentional — he’s actually pretty discriminate about who gets that label.)

So if I didn’t mention it earlier this week, I am now.

This morning was the worst yet…out of three whole days, it’s not a major contest yet. Day one he was excited, day two he was hesitant because he was sure I hadn’t signed all the required paperwork, and day three…it seemed to go so well when I woke him up at 7:30. He slept through his alarm (he was up later last night because it was his behavioral therapy program night) and he didn’t want to get up initially until he remembered that he was hungry and wanted pancakes. And I was so proud, I’d already prepared them, leaving me to just lead him to the kitchen since he normally wakes up and hops out of bed almost immediately. Fast forward to the kitchen a minute later, and he’s mad. I’d made the ultimate mistake in the world of pancakes. I’d…wait for it….poured the maple syrup on them before he sat at the table. This wasn’t the first time, yet somehow this really aggravated him.

I did get him out the door on time, but he refused any sort of food, even a completely new stack of homemade pancakes. (For you new blog-readers, I make almost all of his food from scratch, including the pancakes he eats daily for breakfast, day in, day out.) He did brush his teeth, but only with a lot of slamming and banging of the toothbrush and toothpaste container. If he could have slammed the faucet on/off, he would have. He stomped onto the stool. Shut the door loudly. (You can’t really slam that particular bathroom door, which is a blessed thing.) “There! Happy now?” Stomp stomp stomp to his shoes, shoves his feet in them even though he’d told me earlier he wasn’t going to wear socks or shoes. (“I don’t care if people stare!”) Time to get in the car. “You know what? I’m going to get suspended. You hear me? Then I won’t have to go anymore.” Sigh. SIGH.

At school, we found the classroom door open, and I had a chance to speak with the teacher. I like her. She’s got a big smile and seems to already have picked up on some of ds’s nuances. We talked for a minute, she assured him that I had signed the paperwork, and gave him some tips to handle the teasing he’d experienced on Tuesday. You could see him visibly relax when he realized he didn’t have to worry about the paperwork, and that someone knew about the teasing. And the aide? She’s on it, too, and she’s going to be sure things on the playground go well.

How’d pick-up go? It went great. We chose a different gate, on the teacher’s suggestion, as the other gate is less crowded. He didn’t have to wade through so many people, and he didn’t mind the walk to the car either, though going against traffic with a rolling backpack that drags behind you a bit posed a bit of a challenge because so many were in one-way traffic mode.

But, once home from school, the meltdowns are already worse. He’s been angrily, violently mad quite a bit in the last few days, and it requires so much calm on everyone else’s part to keep him from exploding…though we’re still working equally hard on ensuring he doesn’t get his way every time and that the rest of the house isn’t jumping to give into him, especially if his demands are unrealistic. So we’re wondering — is it from being back in school? The stress of behaving all day so he lets loose at night? It’s too early to tell, but I suspect it’s a combination of that and no regular routine. And to make matters worse (at least for him) is that it’s Nascar week here in town. The festivities begin this evening (though we did drag him around a bit last night to see the haulers parked in various places and to his favorite restaurant after, despite him whining the whole drive about how he’s carsick and it’s not fair that he’s stuck in a car for something we want to do, not him) and don’t end until the fireworks after the race late Sunday night. Thank God, we’ve got respite help during all of this, but I think Monday, the holiday, could be crazy. Two weekends like this a year, and maybe it’s selfish, but we look forward to them all the rest of the year. I do wish ds would find a way to deal even for a short period of time, but forcing him doesn’t help him or change the situation at all, so maybe as he gets older? Again, too early to tell. (And, because I can, go Jamie McMurray, #26!!!)

And this morning? You can bet I didn’t pour the syrup on the pancakes until after he sat down.

Do you ever feel like your child’s right on the edge, and it won’t take but one more teeny tiny thing to push him right into oblivion, the land of unreachable reason?

Today my son’s got a friend over. Awesome, yes? Yes, but he’s been on the edge the last few days, several days where we’ve said he’s ‘just not quite right.’ Off. Easily upset. All those nice little names for saying he’s two seconds away from a major tantrum that will have him screaming, crying and hurting himself. Not that he hasn’t screamed and yelled these last few days — we’ve had plenty of that — but he hasn’t done all three together in a few days now. So when the phone rang and another child wanted to add himself into the mix, I had to say no. I felt bad, but I knew that would not just double or triple the chance for issues, but quadruple it, at best. As it was, we had a lot of “But I want to xxx and he doesn’t…” moments, but they managed to co-exist and neither wanted to end the afternoon early.

This week, we need to get ds a blood test. If you hear screaming, that’s him. I hate it, but it’s necessary. We also need to squeeze in all our Christmas shopping, go to Disney for his birthday, visit his awards ceremony at school and take cupcakes (and don’t forget the required healthy snack) for a school birthday party…and the best part of all, we start his new program on Tuesday night. I can’t wait! Two and a half years later, and this wonderful behavioral program starts. Long wait, but well-worth it! Then he has his birthday party weekend, but unless you’re going to RSVP for it, maybe don’t talk to me about it. Why? NO one has RSVP’d. We invited over 3o children, and the only ones that have told me yay or nay are two parents I happened to run into. My heart will break for him if people don’t come. Why don’t people RSVP anymore? And can his whole class really not be coming, or will they just not RSVP? It’s okay if they don’t, at this point, I just want my little guy to have friends at his party.

Have a good week of holiday preparation!

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