Autism Watch: 2007

Posts Tagged ‘autism spectrum disorder

My son’s got autism. He is extremely smart, is verbal and can speak clearly, and is in a regular education class, but he also can’t tolerate certain textures in his foods, doesn’t like eye contact, flaps his fingers, can’t deal with loud sounds or sudden changes in his schedule, lacks social skills, has personal space issues and a strong need for sameness and repetition, as well as difficulty monitoring his moods and anger, can’t stand tags in his clothes or seams in his socks, has to have everything a certain way or he could flip out, and sensory issues ebb and flow. Yet, because he can speak and is so smart, the autism isn’t the first thing you see, or even the second. As a result, some people that don’t live with us — those that haven’t seen him lick everything in sight, flip light switches on/off, line up chairs in waiting rooms, drop to the ground and strip, run away with no fear, meltdown from rage that fades into apathy — don’t get our concerns. They don’t understand why we push so hard for services in school, why we keep things on an even keel no matter what else, or why we treat him any different. Well, uhm, he is different, and the reason you can’t always tell it at first glance is because of all that we’ve done for all these years.

There was a couple of years early on that we barely left the house, and if we did, it was rarely as a family, so few people aside from our closest and most supportive friends saw the ordeals. We could show videos of the worst of the worst, pictures of the vacant stare, or reports from the nine diagnosing doctors and double-digit therapists and other professionals who worked with him. But why should we have to?

What do you do when you run into people who insist on him just being like everyone else, as though better discipline or a spanking or taking away privileges/possessions could just fix it? What do you do with those people who feel like you just need to have it pointed out that he’s not ‘that bad,’ or that if you just throw him out there and let him learn, he’ll do just fine.

Or do we really need to do anything at all? Is it their problem, or something we need to work on?

What are your thoughts?

We’ve visited the same pumpkin patch for years now. Petting zoo, bouncers, slides, games, swings, reverse bungee, you name it. We’re a few days behind this year — crap week continues — and we expected the crowds that were indeed there. What we didn’t expect was that half the rides weren’t operating, the petting zoo wasn’t open, and the games weren’t being run. It pretty much left the bouncers and slide for ds, as he’s not one for the swings. The petting zoo has always been a favorite, so he was bummed from early on. It came as no surprise, after dh dropped $16 on 20 tickets, that ds had a meltdown. But let’s back up a bit.

First, ds ran to the bouncer. Last year, two tickets got you two runs through it; this year, one. Fine, we do it a couple of times then move onto the bouncer slide. After handing the guy a couple of tickets, the attendant tells ds he can’t jump onto the slide. So much for that ride, ds of course wouldn’t go on it again. Then he moves onto the bouncer, just a regular bouncer with only two other kids in it. Five minutes later, in which he was at least smiling, a kid bounced on him when he fell, and we hear him screaming “he broke my neck!” After apologizing to the mom because ds called him stupid — and mom, if you’re out there, thank you, you were nicer than most people I’ve seen in public in a long time and it is/was appreciated — ds had a complete freakout. Screaming, yelling, people staring meltdown. Dd and I walked around looking at pumpkins. (They had a 95-pound pumpkin. 95 pounds!) People were still turning and staring, but eh, bite me. Yeah, he sounded obnoxious, but he wasn’t hurting your night, and even worse, he wasn’t going home with you, so go find something else to stare at.

We head out, and I point out a family to dh to give the tickets to. “Pick them, Honey, they have three small children in that wagon, how cute.” Little did I know, until mom turned around, that we know them. Yay! Ds calmed down, but we still made him leave…there’s gotta be consequences for epic meltdowns, now that he’s aware enough to understand.

Next year, we may skip the pumpkin patch altogether. We can’t promise that the activities he wants will be there, though we understand. After all, they’re there every year otherwise, the booths are still there, who knew? Some days it really seems pointless to drag him to places he thinks he wants to go but can only turn into disaster…and I’m tired of disasters. Really, so very tired.

He’s upstairs making a loud mess with magnetics. (Yes, we still let him play with ‘those’ toys. He doesn’t eat them. And if he did, I’d, here’s a thought, supervise my child. He can choke on a piece of food, a marble, or any other item that a child should be supervised with, so I’m not going to scream that they be removed from the shelves.) He seems happy, though his fundraising toy that he waited weeks for broke after a few minutes. (Yes, I actually wrote the company for a replacement.) It’s always something.

If you head to the pumpkin patch with expectations, drive by first. Have a backup/alternative in mind. And don’t forget the camera!

And because I’m in a bad mood, here’s a mini-rant. Second-graders need Halloween celebrations..or if we’re being ridiculously politically correct, ‘harvest celebrations.’ It’s as important to the parents as it is to the kids. They’re kids only once. Let them party, let them have fun. When every other kid of the same age is carrying out caramel apples, sacks of cookies and goodie bags, it isn’t fair. It’s  not a big deal. Give them 30 minutes, give the parents time to spend partying with the kids and their class, and consider it time well-spent.

For those of you who have autistic kids, you know Autism. You know how it goes with you wherever you are, usually even when your children aren’t with you. It’s an entity, with its own personality, requirements, and mood. Autism is sometimes hiding under the rug, other times it’s right there and can’t be slightly partially ignored, even by those who wish it’d climb back under the rug. Sometimes Autism is noisy, other times it’s quiet. (And the capital A in Autism isn’t a grammatical error — when referring to an entity, it needs to have a name, and we all know names are capitalized.)

Today, Autism went to the dentist. So did our son. Our son was there to have sealants put on two teeth; he’d had reflux very bad as a child, and it wore off some of the enamel on those back teeth. He’s already had four root canals, because Autism decided it didn’t like its teeth brushed and gagged every time we tried. Our son sat down in the chair, and I followed in to sit with him, with dad relegated to the waiting room due to space issues. (We use an office that specializes in special needs children, so it’s a small price to pay that we can’t both be in with ds.) The hygienist explained the process to him, how they’d clean those two teeth first, then do the sealants, but then she had to step out for a few minutes, and the waiting got to him. Big time. Before she returned, he’d thrown the stuffed puppy (used to cuddle or boost a little one up in the chair) and was starting to get out of the chair to make a run for it when she returned. On went the fancy glasses he requests so the bright light doesn’t hurt his eyes. Oops, wrong color, he wants the white ones. You know, the same ones as the last appointment. We weren’t two minutes into the cleaning when I had to swap with dh because ds started to squirm, whine, cry, and then yell. Dh came in, then there ensued an argument over putting vaseline on ds’s lips. He’s got a lip-licking stim that causes major clown rashes when it gets windy, cold, or just because. Meanwhile, I’d already gotten out two tight knots out of his hair from his hair twirling stim, which worsens with anxiety, and he was definitely anxious. Vaseline applied, and dh left the room. The cleaning was done, and then the dentist arrived to apply the sealants. She patiently showed him every piece of equipment she was going to use, and explained that touching the gloves was a no-no, and that his job was to leave his hands laying on his tummy. That worked for about two minutes…and I am probably being really generous. It got worse before it got better, but after the dentist got the pillow that holds his jaw open (instead of him having to hold it open himself), he was good, as long as they suctioned out his mouth frequently. He forgot the movie playing on the ceiling or the cute bugs on the walls and the puppy that was back in his seat, but soon enough, it was over. I give kudos to the staff for their patience and willingness to work with him, and I hope they get paid well. They seem to appreciate his unique personality, which is a big deal in itself. And when the receptionist commented what a different child he looked to be from two years ago, ahhhh, what an affirmation. To us, he looks better, but we’re with him each day so getting an unbiased opinion from someone else is always a blessing.

So you can understand how Autism indeed went with us. It went home with us, but stayed in a separate room for a few minutes of homework time…even if that was when ds ran to the livingroom to do his homework on the floor because he couldn’t focus with anyone else breathing at an audible level. He knocked out his spelling work, and we headed to his favorite restaurant, Logan’s Roadhouse. (Shout-out to them for peanuts on the table, a great O.T. exercise, where ds can smash, squish and mash peanuts until they scream, then drop it all on the floor and start over again.) He and I enjoyed our ‘date’ night, and for the most part, Autism was quiet. That was probably because ds ordered steak tips, medium well, so ds had to work a bit to eat them, and that too is a sensory experience. A whole bowl of cinnamon apples and half a glass of root beer and we were good to go. To Target. The latest Indiana Jones movie was released today, and not only does ds really want to watch it, but it’ll give him something to do with older dd when we take younger dd to her choral performance tomorrow night. Oh, and I’m cheap, I like to buy the movies we want the week they come out because they’re on sale. He even let me shop for a few miscellaneous items (Halloween candy…18 pounds, to be exact..and that’s just a drop in the supplies, a shirt) before he started bugging for an Icee that I had no way in heck intentions of getting. Moosetracks mint chip ice cream was waiting at home, already paid for, as healthy an ice cream as we can buy, and it wasn’t about to hype him out in my car or give him something to spill on the leather seats. (I know, I know, leather seats…but we bought the SUV a few weeks before A-day…autism diagnosis day. I’ll never forget getting lost in the midst of nowhere on the way to our new neurologist, having to call and get directions, explain why I’m late, deal with dh on the phone giving me no help whatsoever with directions because he was in denial and refusing to work with me or participate in the process, while having to perfect driving the Tank, a vehicle I’d laughed at for years because it’s a Road Barge, yet was suddenly necessary due to family size and the need to tow a trailer. Anyway, I digress….)

Autism’s getting ready for bed now. So is ds. We had our very one-sided conversation about Pokemon, while he was doing his required reading log minutes, and ds announced that he got the best fundraiser results out of his class. (Go us, go us…we worked so hard for that, he has no idea.) Not sure what time Autism will wake up tomorrow, but hopefully it’ll be in a good mood. It’s windy here, fires on the news but none nearby. Fires cause a regression that’s hard to explain, but even the wind can cause some explosions out of the blue, so it’s just one more reason I hate the wind.

And now it’s time to go give ds hugs before he falls asleep. Dentist appointment is over until March, when it starts all over again, hopefully minus any work beyond a cleaning and check-up. Phew.

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.

I found some great news articles on autism today. Here’s a few favorites that are worth the read:

Clinton Unveils Autism Plan AP article

I don’t know yet who will get my vote come election time, but at least this is more encouraging than Bush’s “yes, I’ll get thimerasol out of vaccines” that turned into “no can do,” or his outright vetoes and refusals to sign anything that would take money away from the war in Iraq and spend it on American children with health issues.

And this one’s just fun — because who really ever believed it anyway?

Blog Debunks Study Linking Wifi and Autism  from the Financial post

Enter your email address to follow this blog and receive notifications of new posts by email.

Join 34 other followers

Twitter Updates