A great friend of mine (who I met first in cyberspace, then in person) gave me some wonderful food for thought this week. She also has a son on the autism spectrum, and always seems to have such wonderful and "deep" insights into the ASD world and our place in it.
I was whining on our ASD forum (what else is new, right?) about the strange place I find myself in as a parent of an ASD child who would be described in the lingo as "high functioning". And in her wonderful way, my friend looked at my situation and put it into perspective, in a way I'd never considered. Really, never. I live with my role as A's advocate, protector, champion, therapist and psychologist 24/7, yet until yesterday I'd never really looked at us in this way.
It's like an Olympic-caliber gymnastics competition, specifically the balance beam. My sister was big into gymnastics when we were young, and she and I have always enjoyed watching the gymnasts on TV, etc. My favorite event is uneven bars, but I digress.
So, imagine with me, if you will: A, and our family by extension, is walking on a balance beam. (did you know that it's only 4 inches wide? oops, there I go again) On the right side of the beam is the NT world, the "real" world. It's so close that we can touch it. We don't actually walk in it, but we skirt along the edge and if we lean over just enough, we can sorta kinda feel like we're in it. We can blend in, merge into the traffic of regular life and pedal like crazy to keep up.
On the left side of the beam is the ASD world. The world of ABA therapy, advocacy, RDI, 1:1, IEPs, classroom aides, special diets, and a daily life of valiant struggles and hard-won progress. We don't really walk in this world either, truth be told. A's in a regular classroom, no aides. We don't do ABA, or RDI, or floortime or VB or anything like that. No special diets, no medications, no delayed vaccine schedule, nothing. He gets speech at school, and we do a social skills group once a week, and that's it.
So, I whine. I whine because I feel like we're walking on this tiny, narrow beam and we don't belong to either of the worlds that surround us. And that means I don't belong either. Not to the oh-so-cool Moms that I see at the park, the soccer games, and church.....my life's not like theirs. And not to the brave, dedicated ASD moms I meet in person and online either. It's almost unfathomable to me what these ladies do on a daily basis, and I don't know that I could be as strong as they are, or keep pressing on if my child was non verbal, or violent/self-injurious, etc.
Bless you, dear friend and fellow Obamamaniac. You know who you are. I guess it takes someone who looks at your life from the outside to truly see it sometimes, to give that rational perspective that you may lack. What was this amazing revelation that she gave me? Well, in a nutshell, it was this: She gave us credit. Credit for the tough hand we've been dealt. Anybody who has a child on the spectrum has it tough, no question there. But when I start thinking that I've got no right to complain about A's struggles, MY struggles, now I can remember her words, like this:
"A has some pretty sophisticated expectations placed on him, because he is so very high functioning. In many ways, your life, navigating him through the NT world, is probably much more stressful than mine - because my son is always so insulated and protected from NT expectations. A has so many more expectations on him than my son does, so I totally understand your frustrations about him, even though I don't have a similar child."