Susan's Blog

Friday, October 5, 2012

Nat Notes From 1997

Cleaning out drawers today. Old old Nat stuff, scribbled on the back of envelopes, scraps, whatever paper a flustered mother had at hand. Desperate pleas to help him, work with him while he was young. Extinguish self-talking, arm-biting, urinating on floor. Help him read, he is beyond kindergarten age. Make him respond, make him play.

I was very absorbed in these historical documents — true primary sources for Special Ed researchers about the state of autism education in an otherwise excellent school system, or for mothers who will find grim satisfaction in noting that some things have not changed at all. I don’t usually feel this cynical. I hope this motivates you.

There was nothing for him, so little known. These messy papers took me back to how much I had to do, every day, how exhausting our lives are. How exhausted Nat must have been. Nothing but disappointment for him, or the fanning of hopeful sparks, so much pressure on him to be who he now is before he was ready. Oh, my heart. My utter desperation for my firstborn child. Help him, help him, the world is leaving him behind.


Nat is such a handsome young man! You and Ned are such tremendous advocates for Nat and as I read the excerpts of your communications to the his Team I see how much more ahead of the game you were in terms of what types of interventions and services were necessary for a child with ASD; which I believe was at a time when autism was beginning to silently explode and increase. Heck, a mere 5 or 6 years later when we were learning Katherine had autism I wasn’t even close to being “in the know” as you were!!! Maybe I was in shock? Who knows….!
I’m curious to know what the reasoning was behind the “No” when you asked about creating a sub separate program? Was it a budgeting issue?….lack of information/research?…..ignorance? Nowadays, it seems as if it’s the reverse—more placements in sub separate programs w/little or no inclusion opportunities–at least that’s been my experience in my school district!
Thanks as always for sharing your experiences! Maybe you should be Senator Trailblazer? I may write you in on a ballot one of these days! 😉

— added by Sarah Conley on Saturday, October 6, 2012 at 9:20 am

We are a year or so behind you. How I wish I’d known you then. It was a time of such isolation and the learning curve was so steep. Our son is 19 today, a senior in high school, and again the future is boding and uncertain. Makes those early days that I thought were so fraughtful seem like a piece of cake.

— added by Susan Miles on Saturday, October 6, 2012 at 5:19 pm