Autism Watch: 2007

Archive for February 2011

First, I don’t really think that, but I was told again yesterday that if I didn’t try xxx on BB (for his autism) then I was a sheeple going along with the general public, just because my doctor said so. Well, I’ll be! Baaaaa-aaaaa. šŸ˜‰

After all these years in the autism community, I still get shocked at this mentality, the “I research, I talk about it, thereforeĀ  I am more educated than you” mentality. We’ve probably all run into that here and there. (Or am I just lucky?)

So many things are wrong with this picture. I won’t list them, because I have Valentine’s day cookies in the oven and quite honestly, don’t want to devote to much (more) time to nonsense, but the holier-than-thou attitude doesn’t fly well with me. I don’t go around tooting my own horn, telling you how many hours every day I research autism, how much I advocate for autism, or how many people I’ve helped; what’s the point of that? So just because I don’t tell you about it doesn’t mean that I don’t do it. So when you tell me that the new headache medicine I’m trying for BB is wrong simply because it’s not biomedical and instead is a prescription from the pharmaceutical industry given to me by a ‘drug-pushing’ doctor? You’re wrong.

Somehow this society has confused caring for another and looking out for their best interest with judgmental nosey-ness. There’s a way to share your feelings without putting down those who don’t agree or choose another path. You aren’t ‘better’ than someone, nor is your child necessarily any better off, so get off your high horse.

Just one of those days where I wonder why (not) the autism community can’t do something with the power of numbers: we can’t even get along with ourselves without inflicting the same judgment and nastiness the rest of the world inflicts on us simply because they don’t (choose to) understand autism.

Until that is fixed, we’re not going to make the change we want.

And with that, I’m off to get another tray of non-gluten free cookies out of the oven. (That didn’t work on my child, which makes me a pariah in some circles, imagine that. Autism isn’t bad enough, but because a remedy for only approximately 60% of the community doesn’t work for us, we’re fair game for questioning on that, as in ‘are you sure you did it right?’ It’s not rocket science, folks. But I will stop now.)

Happy Valentine’s day to all!

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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.

Is there such a thing? Because I feel like I’m getting it. Well, maybe not, because the more I learn, the more I realize I don’t know. But I do know I don’t have a DAN within reach and it’s up to me…and the autism community that thankfully shares information on a regular basis. But if I could get a PhD based on time, count me in.

Little guy’s having his headaches, some intestinal issues, hyperactivity and less attention/focusing in school. He also still won’t sleep without melatonin. Time for a change.

After a lot more research, we’ve decided to go with Theanine Serene. Living where we do, we had to order it so it won’t be here for a few days, but I’m anxious to try it.

Then what’s next? It may be time for another round of anti-yeast protocol. We want to see if the theanine (which also includes magnesium) makes enough of a difference. Too many supplements and additives and BB catches on to what we’re doing and becomes resistant. Not that I blame him.

Autism research can be a full-time job, and I work on keeping the balance between finding what I can do to help BB, and just being BB’s mom. Sometimes he needs that more than anything else.

I had an IEP yesterday afternoon. Lately, these IEPs have been pretty standard — we know what’s going to be discussed, we laugh a little, we agree on further services, sign the attendance sheet, and leave with the IEP paperwork to review once more together, at home, before we sign. Pretty simple, especially given that our school is up-front and offers services without hassle. Dh couldn’t go with me, and I wasn’ t worried; I figured I’d be in/out in less than an hour and we’d go on as usual.

Just when you least expect it….wham, the punch to the stomach.

First, the teacher came in to meet me early. I like the teacher, she’s good for him, and I trust her, so when she laid out several issues he’d had yesterday, I believed her. Then she started talking about Tuesday…then Monday. Then another teacher came in and added to it. Then the special ed. director/teacher concurred as she’d seen it. They were very nice about it all, and their approach was fine. It was just that the information, the surprise of it, was a bit…overwhelming?

I know my son has social and behavioral issues. I love him to pieces, and we work daily to fix things and help him improve and learn how to be independent and function in the world, but when you hear there are more issues, or things are worse, it’s still difficult to hear. That’s when I got butterflies and started to do the smile and nod. It wasn’t a ‘how funny!’ smile, but a ‘yes, I’m listening, thanks for sharing’ kind of smile. The kind of smile that signifies I’m holding together just fine, and am rolling with the punches. Inside, I’m sighing and wondering what the heck just happened.

The questions came, and I didn’t have any good answers: had there been a recent medication change? (No, he’s on no meds.) Had there been a dietary change? (No, we eat primarily homemade healthy food, same as always.) Had we noticed any change? (Yes, we’d noticed a few weeks ago that he was more active, his attention span was shorter and he was having more mood swings and control issues.)

While I already knew he was hyperactive — ADHD often goes hand-in-hand with autism — and I knew he had social issues, to hear that he’s now acting out in order to fit in, that he’s trying harder to manipulate situations in an attempt to control his environment (not necessarily to be devious), and that he’s showing lack of focus, lots of fidgeting and difficulty getting and staying on task, well, it was a lot to hear.

New and increased services are in place, and we’re working with the school to be sure we’re consistent and employing the same tactics and strategies at home. Bigger picture, we’re revamping his diet, which is a real challenge as he already eats pretty darn healthy. We’re working on solving his intestinal issue, trying another round of anti-yeast protocol, and seeing what we can do to decrease his level of activity as well as eliminate his headaches…all without medication.

Not sure where to start, but away we goooooooooooo………..

Mommy, I need a pain reliever. It’s at a level 7.8.

That’s what I heard last night around 8pm. Apparently the school nurse also heard it around 1pm.

I heard it the afternoon before. The rating is a little different each time, but 7.8 got my attention.

Two years ago, my son went to his neurologist for a follow-up, where I mentioned his frequent headaches. I get migraines, as does my 16-year-old daughter. (Can I just say how miserable it is watching your child going through insufferable head pain that you know kills you just to have your eyes open?) The MRI was slightly abnormal, but there was no visible cause for headaches, so they were determined to be migraines based on the presentation and other tests he ran. He was prescribed a medication to take daily, but after waiting two days for the prescription to be filled (it had to be ordered) and seeing him not have another headache, we decided to not risk the side-effects. Fast forward to now, he’s still not on medication but he’ll go a few weeks at a time with frequent headaches, then a few weeks of pain-free time.

He goes back to the neurologist on Tuesday, where we’ll seek treatment as well as a note for school attendance. To me, it’s pretty obvious that a child diagnosed with autism and documentable migraines would miss some school, but I am not on the state school board.

Anyway….the wasting of the doctor’s time aside, does your child with autism experience headaches? Migraines? What do you do?

I’ve done a little research. I found this:

Reversing Autism: The Story Behind Feast Without Yeast, an article about a book that appears to detail a dietary change that will reduce headaches

Biomedical Autism Intervention

Autism Comorbidities, part 2 of a blog series about migraines and autism

Not a lot of mainstream information available, so I’m interested in others’ experiences as well as any references anyone may have. I want to be well-armed for the appointment, as I need to find a way to keep barnacle boy pain-free. He’s got enough to deal with already.


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