Granted, we have many, many advantages. He is a smart little guy. He wants to engage socially and is truly charming when he does so appropriately. I feel incredibly fortunate that our piece of the puzzle places us in the high-functioning range of the spectrum. But there is also something exceptionally frustrating about this spectrum territory too.
We had a wonderful weekend. When at home, we rarely even think of his issues. But as I packed him off to school on this dreary, rainy Monday, I couldn't help but feel trepidation that I was sending him straight to the front line of his struggles. It's at school that his high-functioning explodes (or implodes?) into high-anxiety. Why does he struggle so much there? And if he so clearly struggles, why is it then that I feel I must push so hard for compassion and understanding?
Is it because his atypical neurology may be so difficult to recognize? To see? So that when his autism does present itself, he seems merely odd or badly behaved?
Am I seeing backlash for having "labeled" him? Was that a bad idea after all?
Or is it because his struggles and frustrations so often present themselves as anxiety. Does he receive less understanding, less tolerance because while he actually is overcoming his spectrum challenges remarkably well there are times he simply seems like a bad kid or worse, a little "crazy?" Does he carry that taboo too?
Maybe, it is because he's so unpredictable? He copes and copes until he can't and he seems to just explode?
Still, I find him so wonderfully quirky, adorable and endearing, I guess I'm struggling to understand why, for example the birthday party invite can be so hard to come by. Afterall, there is a child with pronounced impairments in my daughters grade who I swear is invited to at least half of the parties, even still, in 5th grade.
Perhaps we've so completely modified our lifestyle around him, have made him so comfortable and at ease in our familiar surroundings that we never see his anxiety while he is here? But if he can be so comfortable at home, couldn't I find at least one other group that would collude with us to make him just "at home" elsewhere? Make him feel welcomed and invited even. It seems we are though — we are beginning to find just such a community at church.
Silver Lining: Our church is reaching out, to us and to other families. We have a new priest. She has a background in special education and has brought that to her role in ministering our church. She also invited other specialists to give a sermon on learning differences which included a specific mention of children on the autism spectrum. My husband and I were invited to a dinner to welcome her to our community and of the families at this small gathering, all of us had children with high-functioning needs. So many displays of support. It is all bit subtle really, but to us of course, it is huge. Receiving this sort of outreach feels unusual. It puts me in new territory. But I am amazed and hugely grateful.