Friday, May 02, 2008

Sometimes I think...

that being a 'so high functioning kid' is a curse, and not a blessing....

The expectations that society-at-large has of these kids is so enormous. They look neurotypical, and on good days they do an amazing job at ACTING neurotypical. But they are NOT neurotypical. They do not process socially ambigious situations, sensory inputs, nonverbal information, emotions, etc., like a neurotypical child does. And letting yourself be 'fooled' by a very high functioning kiddo's ability to mimic neurotypical behaviors into believing that they ARE neurotypical, does that child an ENORMOUS dis-service.

Salamander has come a long long way. There are days now that you really 'can't tell' that once he used to be on the severe side of the Asperger's presentation (as in, no eye contact, extreme perseveration, extreme sensory disregulation, little to no two-way reciprocal communication, very rigid, explosive hour long tantrums, extreme need to 'control' everything and everybody, limited ability to function and participate in unstructured social activities, etc., etc., - really, at diagnosis Salamander would have fit the 'HFA' box better, if not for the fact that he DID develop speech at around the age of 2.. now it wasn't exactly functional speech...).

But never for once have I lost sight of the fact that, despite all of the progress he's made, he DOES process information differently, that he IS different, that his brain works differently.

And never for once do I let myself become complacent during the really good periods and think that he no longer has Asperger's, no longer has LDs, no longer has different needs. I can 'back off' a little, but I can never, ever let go of all the structures, interventions, accommodations, and modifications I've put in place over the years.
And I certainly cannot ever give up on the life style I've had to implement to allow Salamander to thrive and grow.

I wish that others in Salamander's environment (especially school and 'the other parent') could look at the whole situation the same way. Yes, Salamander is maturing, he's growing, his coping skills are getting better.. but you need to be prepared for a 'bad spell' .. always, always, always.

I just spent almost 1.5 hours composing an email to school outlining Salamander's current struggles with issues that are happening at school. And it's a long, long list of 'stuff'...

None of the issues are huge issues on their own, they are nothing new, they've come up in the past, they will come up again. And Salamander really has been working his butt off in trying to deal with all these issues on his own. But this morning, the 'bucket spilleth over' and he fell apart.. utterly and completely.. and I saw behaviors that I had not seen in a while (remember, behavior is communication.. extreme behaviors are a cry for help!!).

At least I got him to talk (not always an easy feat.. as he is not always able to sort through and then label and then verbally express his emotions), and stuff came out that obviously had been eating at him for weeks!!!

Yes, he has not been feeling well for almost 4 weeks now, which is not helping (tough allergy season here, and there is some metabolic stuff going on too that I haven't completely figured out yet). And, yes, end of 4th grade is really really tough. Some of his class mates are definitely starting the hormonal/emotional transition from child to adolescent, I suspect that Salamander is one of those kids. And kids that have been really nice and supportive of Salamander since Kindergarten now all of sudden want nothing to do with him anymore (and that's confusing him and it's breaking my heart).

I know I'll be able to work things out with school again.. I just get tired of having to go over the same issues, the same needs, the same solutions over and over again..
See, I never ever 'slack off', why can't the rest of his environment take that same approach?

Maybe it IS time to 'give up' on keeping him in public school and finding him a school more targeted to his particular set of challenges. But where to find such a school? Salamander is so high functioning, he needs to be with neurotypical peers to learn to function in the 'real' world. So I need a school where that exposure happens. And I cannot afford the price tag that comes with enrolling him in the one or two schools in this state that would fit that model. Not without having to significantly scale down both boys' biomed program, which, for obvious health reasons, I cannot do....

Comments, thoughts, suggestions, shared experiences very, very welcomed....

[and I may get 'killed' for writing what I am about to write.. I watched the Autism Yesterday DVD yesterday. And I loved it. I think it's a great introduction for parents with newly diagnosed kids that 'no, you don't have to roll over and play dead. A lot of these kids are very, very ill and there is a lot you can do to help your child.' And I also think it's a great reminder for those of us that have been 'at it' for a while that 'yes, this is a fight so worth fighting'.

Where I get stuck personally is on the whole 'my child is recovered' thing. Granted, the kids featured were severely affected and they are obviously doing 1000% better.
But are these kids truly recovered?
As in, do they now process socially ambigious situations, sensory inputs, non verbal information, emotions, just like a neurotypical child would?
Are any short term memory deficits, speech issues, executive functioning challenges fully resolved?
No traces of any residual LDs?
No anxiety disorders, mood disorders etc?

If so, my heartfelt congratulations (and yes, I am more than a bit envious in that case) to those children and their incredible parents ...

But I can't help but thinking that some, if not all, of the issues I outlined above could be present and continue to need support and intervention. So is that true 'recovery', or are the children 'recovering', or 'in remision'.... Which of course in itself still is a great thing.....

I have heard parents with severely affected children state that seeing the child progress to 'Asperger's' type stuff would be a blessing. I can understand that, I truly can. I have spent enough time with severely affected kids to know that 'HELL' doesn't even come close to describing what these kids and their families go through. But trust me, getting to the 'high functioning' point is not the price it's made out to be. It comes with its own set of, significant and difficult, challenges....]


At 8:59 PM, May 02, 2008 , Anonymous Anonymous said...

Have you looked at Murphy and Dwyer Academy in Chelmsford? It is fairly new and services Asperger's kids.


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