Autism Watch: 2007

Posts Tagged ‘special needs

I just realized I didn’t share this with you, this gem, this dentastic visit to the dentist for a filling. It’s an epic story, from start to finish.

Start: I pick him up from school, he’s on a tear and starts to cry within seconds because the teacher reprimanded for something that she’d seen while outside of school on a weekend. (I am biting my tongue from sharing my feelings on that, it would take a whole new blog entry.) I promise him we’ll handle it, put on a calm face and secretly think that this may have seriously messed up our dental appointment.

We make the 25-minute drive in pouring rain, with BB talking to Dad on the phone about the injustices of his day. Dad agrees with me that we need to fix it, but top priority was relaxing him to get through the dentist appointment. Ha. I’ll get right on that.

He gets in the chair. Whew, we’re psyched up and ready to go. Oops, 9-year-old girl across the hallway had a meltdown and had to leave — now she’s back and they are going to finish her work. Dentist leaves our room, chair comes back up straight and out comes the DSi XL to keep him busy. Ten minutes later, dentist is back. BB is nervous. I’ll spare the details, but the dentist’s hand got novocained. It was bitten. The mechanical tray over BB’s lap went flying. BB had to be caught before he fell out of the chair onto the floor. Five of us were in the room. Door was shut. Door was opened. Dentist tried three times before he admitted defeat. I was sent on my merry way with a puffy-faced, red-eyed child apologizing profusely for not being able to stay still in the chair due to having a bad day at school. I did the same, while wondering if indeed we could return. Would their patience be any better next time? Did they really want him to return? Would the dentist wear leather gloves??

Finish: It.was.a.disaster. Dad seems to think he can get him to go back to the same dentist and try once again. Hmmph. I’m not going again. I think we need to try a special needs dentist about an hour away. We’re undecided right now, but we will be making a decision by Monday — the filling has to be done soon, but we have a few days to be sure we don’t put him through anything else unnecessarily.

Special needs dentists are a rare breed, and if you are one, kudos. I’ll try to warn you if my son bites, but I imagine it won’t be your first time. Or at least I hope. I’ve had enough of being the unique situation.

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….there are things you just don’t say to someone who does. Especially if you’re a close friend.

Today, someone crossed the line — unintentionally, probably, but thoughtless, nonetheless.

“Don’t blame vaccines. My two girls got them and they’re fine!”  Posted to my FB page.

My mental response? Uhm, yep, your two children being fine most definitely means that the thousands of us whose children were affected can move on to another focus. Oh and you’re super fortunate they’re fine, too! Mine isn’t, but thanks for the kind thought, Mrs. PharmaScientist!”

So I couldn’t really say that in response. My real response was probably much kinder than it should have been. I had to remind myself that people who don’t experience things are ignorant of what it’s like for those of us who do, and therefore, they’re likely ignorant in the area of research/information that we’ve had to immerse ourselves for a decade. It’s not their fault, we can’t expect people to understand us if they’ve not been where we are, but I don’t know zip about Angelman’s Syndrome, scleroderma, cerebral palsy, and a whole lot of other real medical issues, and I wouldn’t tell a mom of a child dealing with one of them how she should feel. I wouldn’t begin to think I knew more than her, or not even enough to comment on it. Even if she made some outrageous comment, like “Don’t breathe air, it’ll cause xx..” I wouldn’t respond in any way unless it was supportive, because I’m not in her shoes. I didn’t spend years having to live around that ailment, I haven’t researched on how to give my child a better life, how to prevent further problems, or how to possibly prevent my grandchildren from being affected, and I don’t know the passion she feels about what she sees as to the cause of the illness. So why would someone do it to anyone? I can’t be the anomaly here — or as someone else put it, as the parent of a special needs child told me, people ignorant of the topic shouldn’t begin to tell those of us who aren’t ignorant of it how to feel, but they’re ignorant of that fact in the first place?

Over the years, I’ve learned that we can’t worry about convincing everyone to believe our feelings; it’s futile and will cause stress. People are entitled to their opinions.  However, we can expect people to respect our thoughts. Random strangers, eh, not so much, but someone who is/was close to you, yes, there should be an expectation of support there…or an expectation that they will quietly agree to disagree instead of being inflammatory.

Off to calm BB, he had a flip-out when I told him I wasn’t going to allow him to pay a child at school for being a friend.

…and he rocked it!

I’m not surprised…not to sound like woohoo, isn’t my child so smart, but he’s been complaining about being bored and telling me math facts on the way home from school. He also got his state testing scores back and was exemplary, though just on the high edge of ‘middle’ for science. No surprise there either, it’s not his favorite topic.

Whenever we talk to any school staff, whether it’s for an issue or just an update, we hear that he’s wonderful in the academic setting. Yes, that is an awesome thing, and yes, it’s reassuring, but that’s only half of school.

Anyway, before I digress into my concerns about the phonecalls/incidents last week — Did I even blog about them? It’s a blur — I’ll just stay on topic. It’s better for my impending migraine. BB was thrilled with his grades, and I got a chance to make sure he’s being tested for GATE, if he wasn’t already. I don’t want a pesky diagnosis changing his possibilities. If they want to treat him like anyone else, it stands for the positive things, too. Luckily his teacher gets that.

We’ve had to change his homework routine. Now, he is back to doing it as soon as he gets home, after his snack, and before he gets on the computer. Once he’s on there, it’s hard to get him off. But, he’s learning more HTML daily, and now CFrame. He’s even got a couple of mentors, and he’s making some amazing things. So, for those who think computers aren’t good for kids, yeah, you’re right, being well-rounded is ideal, but a career in computers isn’t too shabby. (Ask me, it sure pays the bills.)

He should be starting soccer in the next few weeks, and by then, it’ll be cooler aka tolerable enough to go outside for more than five minutes without needing a change of clothing.

I’ll try to get back to more exciting updates in the future. It’s probably a good thing that there’s not much exciting to discuss, but there are many days I call it just boring. We really need to get out more.

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 bucket..office 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.


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