Thursday, June 03, 2010
Tilling: 30 Posts in 30 Days
This blog has been fallow for a while. I've inadvertently taken off whole months from blogging as I've been doing all the things that parents do when they aren't in a state of crisis over the place that their child occupies, either in the present world of daily life or future world of our imaginations and of time's unfolding.
I'm aware that this time I've had available to focus on other parts of our lives is a luxury that could evaporate faster than our 401(k) balance did in the autumn of 2008. The space to focus on the sorts of things that we imagine the parents of typically developing children get to think about is something that parents of special needs kids can't take for granted.
ASDMommy writes beautifully about this in a post called "The Other Mom," where she describes her feelings of living at the margins of normal parenting as her son's differences from other children make her own life quite different from other parents. It's hard to believe that for the past couple of month's I've almost been "the other mom" — able to concentrate on something besides getting a new neuropsych, or looking for a new school, or consulting with a learning specialist, or adjusting medications, or trying to find a summer camp, or developing a reading intervention.
The change wasn't dramatic. It seems like these changes just crept up on us. But actually they didn't. The changes happened not only because Sweet M is growing up, but also because she's just been growing in every way—because of all the things that so many people have done to help her on her way.
When I started to turn the soil over on this fallow blog a week ago, I began reading around on the blogs of other parents with kids on the spectrum or with communication disorders, looking at what was going on in neighboring fields.
I discovered that in addition to the folks from my own initial blogging pastures — folks like MOM-NOS, Kyra Anderson, Kristina Chew, Estee Klar and Liz Ditz who have been blogging and parenting and advocating consistently month in and month out for years — that there are so many other fabulous folks with children who are just a little younger than ours who are hoeing similar rows to our own.
Along with ASDMommy, another one that I came upon last week is the extraordinary site of Robert Rummel-Hudson writing about his girl Schuyler. Schuyler isn't on the spectrum. She has rare neurological anomaly that interferes with language acquisition—what Rummel-Hudson calls "her monster." But her story and Sweet M's, their story as a family and ours, have many overlaps.
When I read Rummel-Hudson's devastating post about the ways a particular test and IEP meeting had left his vision of Schuyler's future temporarily crushed, I thought of the time that a neuropsychologist told us that our girl had "disordered thinking" — standard code for psychosis. I thought of the time that the psychologist with a new parent training method he was marketing told us that she had oppositional defiance disorder (when he hadn't even read M's history or evaluations, so he didn't understand that she couldn't even track his commands, let along follow them.) I thought of the five-year battle we waged with Sweet M's school to keep her placement and to get her the services that she needed.
We held to our view that Sweet M was smart and teachable and worthy of the work required to bring her along. We cajoled, we debated, we picked her up from school in the midst of huge meltdowns, we negotiated, we threatened, we sought legal counsel, we got additional neuropsychs, we wept, we blogged, we remediated, we reached out for help, we overspent our budgets, we neglected our careers, we doubted ourselves, and we did what any parents would do. We loved our girl.
So when I read Robert Rummel-Hudson's post about the wrenching despair he felt after a particularly bad encounter with educational testing, I wept. And I hoped that he will never ever capitulate to the crushing calculus of educational metrics. (Somehow I doubt he ever will.)
We are enjoying a hiatus from these particular battles right now. We have a truce with testing, a zone of neutrality from the sometimes devastating demand that everyone follow normative developmental trajectories. Now that we are in a cease fire, we can cheer others from the sidelines.
And instead of spinning off into the world of "the other moms" who are taken up with other things, Kyra Anderson and I are looking back, looking inward, and looking forward — regrouping — with a thirty day blog fest — 30 posts in 30 days — to see where we've been, think about where we are, and imagine where our kids may land. I hope you'll join us all through June and beyond.
Posted by MothersVox at 6/03/2010 09:08:00 AM