Saturday, February 27, 2010

I warned you it was coming lol, more autism

I was typing a reply to an email and the thoughts on Zachary and autism are swirling. I just had to get it out and always welcome your input.

For me, what I mean by not wanting to "fix" him goes to the core of who he is that I don't want to change. Yes I absolutely want to help him through the anxieties, the melt-downs/rages, the flapping or humming, recognizing pain, etc. I homeschool my son and that's what works for us; I get to work with him on a daily basis, finding what works for him and (more often than not, lol) what doesn't. I've had to work quite a bit with him on empathy for others and even empathy for himself; yet he has this unbelievable compassion and deep feeling for animals. His emotions involving people very often is too powerful for him and we are slowly finding appropriate responses for him to communicate the confusion. His mind can analyze a situation and solve what is going on; my work with him is to help him learn how to communicate these amazing findings of his to share with the rest of the world! ☺

The more I read about autism, the more I realize how wrong the Pervasive Developmental Disorder/Not Otherwise Specified (PDD/NOS) diagnosis is. I get angry that I had to insist they relook at his case; this in spite of the demonstrated autistic behaviors during therapies, as well as spectrum scoring on parental intake testing and initial evaluations with Zachary. Reading the most recent diagnosis is like reading a textbook definition of autistic behaviors, yet the doctor resisted--and even wrote of her resistsance in her notes--and settled with PDD/NOS.(we don't go there anymore, lol)

I'm sure many of you have seen the Autism car magnets with the puzzle pieces making up the ribbon. (and I want one btw!)

I do believe there are many puzzle like pieces to people with autism--the problem I see with it is that many still only see the finished "piece" and find that to be the problem. I don't think all the pieces necessarily fit together, and helping those on the spectrum, or at least my own child, is about:

  • finding the pieces that fit together properly
  • finding the pieces that don't quite fit and gently reshaping them to fit the best way they can
  • finding the pieces that just can't go back in the puzzle--those are the areas we have to learn creative and positive techniques to fill in the "holes."

I know these are layman's terms and these thoughts are coming from my heart in my search for helping Zachary, which in turn helps my other children too. They have their own levels of frustration when handling some of Zachary's issues...but Alexis, Dylan, and Mallory are the most amazing siblings to Zach. To him he is their special, hilariously funny, imaginitive little brother, nothing more and nothing less, and they are amazing with him. But they are human, too, and get frustrated at times when Zachy hits his limits or has a rough day and just can't communicate verbally what is bothering him. I wonder if there is a book out there for kids to read and learn...hmmmm, maybe we should write it? lol!

1 comment:

Anonymous said...

Hi- I just know you from the lapbooking group, but have you had Zachary checked for Lyme's disease by, and this is important, a "Lyme literate doctor" (these are sometimes hard to come by)? Lyme's disease is often misdiagnosed as autism spectrum in children. There's a good doc I know of in Orlando, but I don't know where you are. The earlier you get a correct diagnosis, the earlier better chance of recovery someone has. And unlike autism, there actually is hope for reversal of nerve damage. There's a great documentary about misdiagnosed Lyme's disease called "Under Our Skin" that you can purchase online. It doesn't all pertain to children, but there's a section on it and it's helpful to watch the whole thing to get a broad perspective.
I know it's hard to always get suggestions from well-meaning strangers, but my husband was misdiagnosed for 4 years, and we've since done a lot of research, and I'm not writing this just because I read somewhere that Lyme is the "new, new thing". It is something that you should seriously look into for your son.