|Carrying the Hope - Page 5|
RDI work takes the form of parent-led activities, usually in the home. Parents record their work, using video and notes, so that consultants and parents can track the progress toward mastery. For example, in Stage 2, a major objective is having meaningful dialogues with your child using only gestures to communicate. When we were working on this objective, one of our games was "traffic cop." Brian and I would put whistles in our mouths to keep us from talking, and then we'd then take turns letting each other know when to come closer, go further away, move slowly, move quickly, etc. I made sure we did this work in a quiet space where distractions were minimal and tried to make it clear to him when I could tell exactly what he was "saying" just by watching his body. It was remarkable to watch Brian gain confidence in this alternative communication modality and to see him generalize it to other settings.
We've been doing RDI therapy with Brian for almost four years now, and we've seen significant remediation in each of the areas of core deficits. RDI therapy is the hardest and most rewarding work that Todd and I have ever done. It's basically Ÿberparenting—always mindful, always well-paced, always at the child's learning edge, and always dynamic—and it's this parenting (or as close to it as merely mortal parents can do) that children with ASDs need. But to attempt to do this kind of parenting is a continual challenge, on every level. Let me to take you into my messy RDI world.
I'm sitting at the monthly RDI parent-support meeting feeling like a disaffected preteen, arms crossed, rolling my eyes at my friend, Samantha, who's sitting across from me. This isn't my usual M.O. I adore our RDI consultant, believe fully in the program, and consider myself a fairly mature adult, so what's my deal?
The topic of this particular meeting is "appreciating messiness." The consulting staff is working with this group of moms and a few dads to figure out how we can incorporate more messiness into our lives in the service of helping our ASD kids appreciate the messiness (literal and figurative) of relationships and of the world. In fact, we're broken up into small groups and sent into therapy offices to make a "stew" with oil, flour, liquid soap, toothpaste, oatmeal, and salt.
Later in the meeting, we're given handouts with suggestions of messy activities that we can try at home, like filling balloons with shaving cream and water, having a snowball fight with crumpled paper, painting a mural, and eating breakfast for dinner. The suggestion that still sends Samantha and me into fits of laughter months later is to create a sand pile instead of a sand box. The details of idea are: have a truckload of sand delivered to your backyard, play all sorts of messy games on the mountain all summer long, and order new truckloads every few years. This is the idea on creating mess that makes me really mad.
The nature of my anger is complicated. I absolutely agree that ASD kids need lots of opportunities, far more than typically developing ones, to experience messiness in the safety of their own homes with their primary caregivers before they can be expected to handle competently the messiness of the world. And I absolutely agree that ASD children's difficulties with messiness operate on many levels. Putting their hands into a bowl of toothpaste and flour can be overwhelming to ASD children's already skewed senses. Such messes upset their black and white notions of where toothpaste belongs and doesn't belong. And making messes like that requires joint attention and the sharing of the experience if the mess-making is to be meaningful and fun. I absolutely agree that making a messy stew with my ASD child is a great idea.
But then I start to examine the RDI consultants' message, which sounds to me as if I, an ASD parent, need to be encouraged to loosen up and get messy. That seems fine on the surface, but, at the emotional level, the message seems to imply that my kid has an ASD because I can't loosen up. And maybe they think that my kid's ASD will get better if I can just loosen up. This all sounds suspiciously like blame, and makes me feel defensive as hell. My rational self trusts that the RDI consultants respect me as a mother and don't blame me for my child's ASD, but my irrational self is having a field day!
I start thinking about friends of mine who are far more neurotic than I—friends who don't allow finger painting indoors, friends who rub Purell on their kids hands at every turn, friends who'd never tolerate the shaving-cream treasure hunts and mud pies that we enjoy at our house. These friends aren't sitting on the floor with other grown-ups making oatmeal stew. These friends, in fact, are raising kids who are the poster children of typical development.
Fast-forward a few months. I attend one of Gutstein's two-day RDI workshops. By way of empathizing with ASD parents, he says something like, "Parents of neurotypical kids can do a relatively mediocre job, and their kids will turn out just fine because the force of typical development is very powerful. Parents of ASD kids have to do an A+ job nearly every day in order to help their kids bypass and work around their condition. That's exhausting." This is an "a-ha" moment for me, offering some clarity about my anger. The biggest difficulty, for me in parenting an ASD child isn't the financial strain or the chronic worry. It's having to bring my "A game" into play every moment with Brian every day.