For more than a month — an eternity in the autism blogosphere — Autism's Edges has been dark. Some may have even given up on this site as dead and gone. I almost had.
Too much had happened — too quick, too painful, and too daunting — to sum up in short posts.There were (and are) troubles a-plenty with Sweet M's school — troubles about which I have not felt it prudent to post given their complexity and what is at stake for Sweet M (i.e. a free and appropriate public education in the least restrictive setting.) There were psychiatrists to see and medication doses to adjust. There were possible schools to research as alternatives and school tours to take. There were conversations to be had about wonderful settings where the tuition is $72,500 per year. There were attorneys to talk with. There was the coordination of childcare since it was never clear when Sweet M would be sent home from school. There were conferences with teachers and principals and heads of school. There were conversations and quiet time with Sweet M to try to hold in tact her own sense of her wholeness, and value, and goodness. There was just the everyday work of making a living to support one's fragile family. And there were some hours — not many, but some — of dark despair.
Sometimes things are just too hard to write about, as MOM-NOS had observed. I admired her for making that observation (as well as for much else), particularly when I myself only grew gradually more and more silent.
At the heart of the particular despair that I felt was a single idea: that there is no place in the world for my beautiful daughter. Folks who do cognitive behavioral therapy talk about the ways in which a belief or cognition can send one spiraling down, and I can see that. The idea that there is no place in the world for one's child is a quick ticket to despair. Social banishment — even in the form of troubles at school — can inspire an almost primordial dread in the neurotypical.
I've been working on banishing this mistaken idea, with some success. But the exorcism of this demon got a big boost yesterday, fittingly enough under the auspices of the Jesuits and in the week before Halloween, at the extraordinary conference Autism and Advocacy: Witness and Hope that Jim Fisher and Kristina Chew organized at Fordham University. It was a moving day of panel presentations, and evening of readings, where Mark Osteen read of the anguish of waiting for hours and hours as his autistic son took five times the typical time to awaken from surgery (for the removal of a wad of paper that he'd inadvertently lodged in his nose); where Bruce Mills shared the story of his neurotypical daughter's challenges being the sibling of an autistic brother; where Gloria Pearson-Vasey read from The Road Trip: Life with Autism, a book she coauthored with her autistic son Kevin; where Jean Kearns Miller (editor of Women from Another Planet) read poems and shared experiences of being an Asperger's mother. There was an atmosphere of community, without the requirement of any uniformity or conformity, and the sort of hospitality that is more healing than any hospital.
Many thanks to Jim, Kristina, and the folks at Fordham.