Contentious Topics

Charlie woke up before 6am on Tuesday morning (or maybe it was more like 5.15am). He hung out on in the living room wrapped in a big yellow fleece blanket and then asked for his pants and a shirt and socks. Jim and I tried (groggily) to talk him into going back to bed; we were not surprised that he did not. Fine for him to get dressed but on school mornings, Charlie, once dressed, insists on heading down the stairs and out to the car in the parking lot and the mornings have been frosty. Not to mention the fact that standing in a cold parking lot for an hour and half plus does not sounds a great idea for anyone.

Charlie's been waking up early most days. Even last year he had a tremendous amount of time getting up and his schooldays often started on a rough note after a massive struggle to wake him up, get him out of bed, get him dressed. Jim and I often tag-teamed running to beg the bus to wait for him and hurrying Charlie into his clothes. Charlie was also still having a great deal of trouble getting himself into bed and then going to sleep; melatonin definitely helped, though we often wondered if it contributed to his early morning grogginess. This past summer, Charlie started putting himself to bed around 9pm (sometimes even around the jaw-dropping time of 8.30pm). 

Getting Charlie to sleep and up and ready for school were once some of the major challenges of our day. Now they've become things he does pretty much on his own (and he tells us that he doesn't want us helping out---okay by me). Not that there aren't other things to worry about, like a little matter called school, figuring out how to transition Charlie into the new school, still needing to remind the school district about its various violations of IDEA, feeling like we've come to the end of our rope as far as options for Charlie here in New Jersey, reaccessing what sort of teaching techniques might foster, or hinder, Charlie's education. And not to mention all the usual things one does to help Charlie through the day, from having to wait behind seven cars in front of us at the Walgreen's drive-through window (more like the "park 'n' wait window") or to sending him a look that (I hope) said "whatever" when, this afternoon, caught my eye and indicated that he might knock his forehead on the car window. 

Charlie, you know better than that was what I tried to communicate non-verbally. At school (as far as I can make out from the Incident Reports, since the district's made it clear, they are not entertaining discussion about Charlie's behavior plan), a minimum of two (male) aides would have been hovering over (at the very least) Charlie by that point and getting ready for the whatever-person hold. As for me, I stood across from my boy and barely shrugged my shoulders. Sure Jim and I have been through many a "neurological storm"-induced behavior (I just don't find "tantrum" or even "meltdown" the appropriate word here; I don't want to use euphemisms, but think "tantrum" prejudges the situation and what it's like for and with Charlie). But if I communicate (non-verbally, especially) fear and worry, you can be sure that Charlie's fear, worry, and his flight-or-fight reaction will crescendo. The worst thing about the restraints that the school district and its ABA program say are necessary for Charlie's "safety" (read: that's what the school district's lawfirm told them to say) is that these restraints just make everything worse. All the restraints say is that this school district has no idea what to do to actually help and teach Charlie.

But you've heard me soapboxing about all this before. I'm not planning to go into these contentious directions at a meeting with Charlie's case manager this morning at 9am. Just getting the transition to the new school for Charlie has taken a whole lotta effort to get started; making it anything like "mellifluous" seems more than a long shot. Can't wonder about him having bouts of anxiety as his time at his old school winds down and as he finds himself in a new place, and not one that he had requested.

 And so, with Charlie brushing his teeth and in the shower, I sat down and read Blood Mercury Concentrations in CHARGE Study Children with and without Autism, which was published online October 19th in Environmental Health Perspectives. You've probably heard about this study by now: Researchers from UC Davis, some affiliated with the M.I.N.D. Institute, found that children aged 2-5 on the autism spectrum had similar blood mercury concentrations as their same-aged "typically developing" peers did. "Dietary and other differences"---such as the use of "nasal sprays and earwax removal formulation"that might contain thimerosal---were accounted for; these, it was found, not either "[elevate]" or "[reduce]" the levels of mercury in the blood of the children (who were part of the CHARGE study.) While not feeling surprised myself at the results, reading it did lead me to reflect on the contentiousness associated with the topic of vaccines and autism, and the (as usual) over-the-top response of "pro-vaccine-safety/anti-vaccine advocates" in the wake of Dr. Story Landis resigning from her position as a federal member of the Interagency Autism Coordinating Committee after a certain handwritten note was blogged at a certain autism blog, with David Kirby Huffington Post posting about the kerfluffle.

Theories of autism causation come and go, ebb and flow, rise and fall, but the need, society's moral obligation (yikes, I am getting on my soapbox---ok, soapvox---here; I could blame it on taking this little venture into the old vaccine wars warhorse of a topic, or that school thing again.....), to educate individuals on the spectrum in ways that fit with their learning styles and cognitive profiles: I could go on and on.

Let's just say, Tuesday night, Charlie was in bed by 8am and in slumberland. Giving me plenty of time to ready myself for another early morning.

And for a little Virgil.

Comments

[emma]

Maybe, in a way I'm lucky that I know the reason for Dimitri's diagnosis of Angelman Syndrome, I'm not left wondering "what happened". But even before his diagnosis my focus was always "ok, what do we do know", what educational methods would help him reach his full potential.

I think the quest for aetiology can seriously distract (and take funds away) from what is most pertinent, helping those people here and now (as well as future generations), have the best life possible NOW and in the future (adult services - where are they?).

I hope the meeting goes well today!

[aenea]

Good luck with the meeting today- I hope that it goes well!

Emma...I couldn't agree with you more. Maybe it's just that my kids were diagnosed about 12 years ago and we've had time to get used to it, but I'm considerably more concerned with services than I am with the "why" of autism.

[farmwifetwo]

My gripe isn't with causation but with the "camps" especially those that claim to be different - Hub/LB-RB/ASAN - that wish to stop discussion and simply blame the other side.

To claim a child with autistic disorder deserves to be spoken for, so that the Aspie/HFA side can be the only voice heard, is IMO no different than any other supposed autism lobby group. Everyone is entitled to be heard. Everyone is entitled to an opinion, to refuse others the ability to speak and demand that only you have the right to do so... is that not a dictatorship??

[Dwight F]

>> To claim a child with autistic disorder deserves to be spoken for, so that the Aspie/HFA side can be the only voice heard

>> to refuse others the ability to speak and demand that only you have the right to do so... is that not a dictatorship??

If this was what was happening, if it wasn't a hypothetical construct created in your own mind, you would have an excellent point, farmwifetwo.

[Linda Sullivan]

Your family deserves the best. Hope the meeting this morning goes well.

[Club 166]

Well, it's not the place for him (because they refuse to make it so), so this is just one more step to getting him out of there and finding a place that will be better.

Hope all goes well today.

Joe

[Kristina Chew]

The meeting went well, I think---there were no clear plans to have Charlie visit the school, meet his new teacher, etc. prior to starting there so I was glad to have emphasized the need to do this. I made a big appeal about how it's still important to do our best by Charlie in his current school, even though he will soon no longer be there----can't just keep sending us paragraph long incident reports. Not sure if that will go anywhere, but will just keep pushing.