As much as I was excited to start writing another autism blog back in April, I had a few hesitations, namely, what more did I have to say about autism than to record the stuff of our days—tough moments, triumphs, random musings in watching Charlie grow up? Moreover, I was not at all sure how I felt about talking about any number of autism-related issues of a political and “controversial” nature.
Like mercury and thimerasol. Like the MMR and vaccines. Like whether or not there is an <a title=”AutismVox: What if there is no autism epidemic?: Roy Richard Grinker in Time magazine” href=”http://www.autismvox.com/what-if-there-is-no-autism-epidemic/#comments”>epidemic of autism. Like the Combating Autism Act. Like prenatal genetic testing and eugenic abortion. Like the use of electroshock as an “aversive.” Like physical abuse. Like the stabbing death of 15-year-old James Alenson by 16-year-old James Odgren.
When you are an autism parent, the personal just is the political. From the time that Charlie was diagnosed, any mention of “autism,” be it on a brochure from a therapy clinic, a passing reference in the newspaper, struck me right in the gut, or rather, the heart. This is about Charlie, I said to myself. This is all part of it.
But it seemed like so much and my mind, and my hands, and every waking and sleeping moment was all about teaching, all about taking care, of Charlie. I know some mothers spend endless hours tracking down the latest research on thimerasol and the brain (as Portia Iversen writes of herself in her book Strange Son: Two Mothers, Two Sons, and the Quest to Unlock the Hidden World of Autism ), but—especially when Charlie was younger—just tracking down a box of Things That Go Together flashcards or Charlie’s stuffed dog seemed like plenty—like quite enough.
When I did consider the likes of the above “autism issues,” it was always through the lens of my personal experience, that is, always through the lens of Charlie and of being Charlie’s mother. MMR? Charlie had not had a reaction; Charlie’s development was already “delayed.” Epidemic? I was certainly seeing more autistic children but, prior to Charlie’s diagnosis, I knew nothing about autism. Abortion? I tried to write about this many posts ago (in Abortion & Autism: Two A Words (#122) and found myself approaching incoherence. Electroshock? What…….
Even education, the one issue that I intended to be the focus of AutismVox, had so many corners and angles—mainstreaming, training, LRE, FAPE, all the minutiae of IDEA, and I wanted to keep my eyes focused on my greatest concern, Charlie. Not being a scientist, not having a background in something like psychology or medicine or the law, in anything practical that could obviously applied to Charlie’s educational needs, I preferred to keep my opinions (or the lack I had of them) to myself. I was surprised at how even a simple discussion about ABA—which has, through trial and error, proved the best method for teaching Charlie—could quickly escalate into a heated philosophical exchange about human nature and human rights that left me feeling raw and exposed.
But I never felt so raw and exposed as when the school nurse in the town we used to live in called to tell me Charlie had hit his head 20 times and she had applied ice.
I never felt so raw and exposed as I did in some of the meetings Jim and I attended with Charlie’s teacher in the district, the case manager, and the consultant with his plans for “behavior management.”
I never felt so raw and exposed as when we took Charlie out of his classroom in that school district in November 2005. One of the schools he used to attend was not five minutes from our old house: What were we doing? Where would Charlie go to school? Why had we left our jobs in the Midwest and come back here to New Jersey? What was going to happen?
I suppose you could say, after all that, I felt like I had not too much left to lose. I don’t mean regarding Charlie who, once he started to attend a small, private, ABA autism school in December 2005, just started to do well (with numerous bumps and setbacks, including the school closing—but these were tremors by comparison). After all that, I did feel I had a few things to say about autism education and I thought I might as well see how long I could last writing about them more publicly, and, hopefully, learn from others. I remember clearly how alone Jim and I felt that day we took Charlie out of his old public school classroom; there seemed no place for Charlie—-there was no placement for Charlie—and we were back to wandering.
The more I wrote on Autism Vox, the more I felt myself drawn to talk all those autism issues—the hot topics I had been careful to offer “just my opinion, that’s all,” on. I read, thought, I fielded comments, I tried to see every side, I began to write about my oldest passion—books. Vox is the Latin word for “voice” and I heard, and keep hearing, so many voices via Autism Vox, and I am grateful for I have learned from them—from you—and wish only to keep learning.
Charlie is certainly a frequent guest on Autism Vox, where this blog is identified as “Charlie’s blog” and that is what it has become, a blog of days lived, many quietly and filled listening to Charlie’s words, and smiling at small gains: Jim telling me “Got on the bus this morning like clockwork!” Charlie sitting serious in a swivel chair in the living room while it was vacuumed (a noise that has been known to irk him). Charlie running out to the driveway to greet his ABA therapist and, when the therapist stepped into the bathroom, going to look for him in there. Charlie eating his brown noodles very nicely with a fork. Charlie hearing me mention that a former therapist had emailed me and calling out “Stella! Tara! Stella car, Stella baby!”
Those are the “Hot Topics in Autismland,” are they not?
But if you really want to hear more about whether there is an epidemic of autism………