Saturday, October 28, 2006

Hospitality

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.

8 comments:

Kristina Chew said...

Halloween being so near just occurred to me---I have gotten only 1 part of Charlie's costume so far!

A great deal of light shone on us thanks to meeting you yesterday. I'm so glad you posted here about the reading----talk about processing, I don't know how long it will take me to think everything through.

Always thinking of M. Do we know troubles a-plenty in Autismland: M sounds sweeter than ever and she'll light the way for everyone through the dark and into something very, very bright.

MothersVox said...

Good -- your comment is back! Blogspot has been spotty this morning.

This year Sweet M has made Halloween easy for me . . . she's boycotting the holiday. She said it's creepy and icky and that all of her favorite cartoons get creepy and icky. When I ask her how that made her feel, she said, "It's soooooo boring." She insists that we should move directly to Christmas.

So no Halloween costume to get this year.

Not sure whether that's good or bad, but it's a time saver.

The conference was a real watershed event because of how inclusive it was of so many points of view even in the context of conversations that were largely about issues of inclusion in church, temple, or congregational settings.

M is very sweet these days, but it has been a bitter experience to see education professionals and administrators engaged in the process of othering her.

Kev said...

"but it has been a bitter experience to see education professionals and administrators engaged in the process of othering her."

I empathise completely. This time last year was bad-getting-worse for Meg and school. It got so bad she's Home Ed now.

Other people have unlimited capacity for denigrating children who are not of standard issue.

MothersVox said...

Sorry to hear about Meg's being pushed to Home Ed. I have to say, I've been wishing we could home school Sweet M, but given the practical realities, and what she needs, it doesn't really make sense for us.

Thanks for stopping in Kev. I'm going to try to get back to posting. It feels good to be thinking instead of awash in a sea of inchoate emotions.

KathyIggy said...

There is a place for your "M", just as there is for my "M." What a difference a year makes thanks to a much better placement, teacher, and meds adjustment. Megan is often laughing and SILLY at times, something which would almost never happen last year. She trusts her classroom and speech teacher and opens up to them, which surprised the teachers given all the negative comments at last year's IEP meetings re behavior. We've even worked through a problem with a classroom aide who was making inappropriate remarks to Megan; that person is leaving special ed. I know in time you'll hear giggles from your M too. There is someone in school who will realize her potential. BTW, my M does not have a medical ASD diagnosis, but the school classifies her as ASD. She has ADHD, anxiety, receptive/expressive language delay, sensory integration dysfunction, pragmatic language delay, and "likely" CAPD. Sound familiar? Luckily, lack of a "official" med diagnosis hasn't caused problems w/the school district.

MothersVox said...

Kathyiggy, That is pretty amazing to hear. Sounds as though M&M -- to reference to the candy company except in terms of the girls intrinsic sweetness -- are practically twins separated at birth.

Would you be willing to say what school district your daughter is in?

I am trying to decide whether to push for the Dx or just continue on in ambiguity.

KathyIggy said...

Our school district is Normal, IL Unit 5. Normal is the home of Illinois State University (the state teachers' college), with its Special Ed dept. ISU has an Autism Outreach Center here (with Professors Stacey Bock and Karla Doepke) and the McLean County Autism Society is very active and involved with local school districts as well. We have been very fortunate: Meg has attended Unit 5 since Kdg and her previous school district, Unit 4 in Champaign, IL had a fantastic Pre-K Spec Ed program. Of course, there have been a few not-so-good classroom teachers. But I have been very pleased with all the Special Ed staff. So far, they have all been very responsive and caring people.

MothersVox said...

Sounds as though Normal is one of the few places where a girl is allowed to be different!

Thanks so much for all of that information! I hope it continues to be a great setting for Meghan.