There has been a whole lot of ink spilled about the ways in which raising an autistic child involves a process of grieving, of coming to grips with the "what might have been" of parenting. It's an experience of burying some dreams and dealing instead with a new reality, one that not only might not have any typical parent dreams embedded in it, but one that might be suffused with new, unanticipated, and perhaps even indescribable sorrows. So I won't focus on that.
My autistic son is soon to celebrate his 24th birthday. I don't know that I consciously grieved for whatever version of a son I thought I'd lost. But I do know that I'm totally tickled by the son that seems to have emerged in just the past few months. Noah has always been funny, silly, quirky. All of which, I am convinced, are signs of intelligence. And I've always believed that he takes in and knows more than he can communicate back to us. So what a wonderful revelation it's been to see Noah emerge from whatever state of lesser comprehension/communication he's been living in. I have my theories about what might have sparked this change, but as for the change itself, it embodies things like his asking us this weekend, "Is Ariel anxious?" And then offering, "I can help." And also asking, "What is anxiety?" Amazing what he's been hearing and paying attention to. What he's been taking in and understanding.
I'm afraid to get too invested in these changes, lest they disappear. But I will cherish this miraculous unfolding, this unfurling of my son's magical self, for however long we have it. There is also a kind of calm that has accompanied this unfurling, along with more certitude about what he's willing to do or not do, eat or not eat. He seems to be coming into his own, owning what it means to be Noah. And it's pretty f**king amazing.
Even on our several hour drive home today, when I honked lightly at one car and he asked me if the driver was an asshole, I was thrilled. Yes, he'd heard that one from my husband, who spends way too much time in his car, some of it with Noah riding shotgun, but it was matter-of-fact and contextually appropriate. No, we don't encourage cursing, but our tongues slip now and again, and he's clearly been listening.
The young man I'm seeing and hearing from now isn't some new and improved Noah; he's the Noah who's always been there, but he's kind of revealing himself to us for the first time. Or for the millionth. My guess, my theory, is that the shift we made some months back in his anti-seizure meds has lifted some kind of cognitive cloud. In fact, the change in meds was made when Noah's neurologist asked me almost in passing back in March if I'd seen any changes in him and I said that he'd recently had one of his can't-talk-him-off-the-ledge episodes, the kind that compel us to reach for what we--and Noah--call his emergency pills. The doctor then proceeds to tell me that the anti-seizure meds Noah had been on for several years--ever since his first seizure--can in fact cause behavioral outbursts. Well heck, good to know that several years into giving them to him every damn day.
Since we've tapered those meds, not only have we not seen an outburst; we've seen it's opposite. I would describe it as a kind of maturation, combined with greater awareness, understanding, communication, engagement, and self-regulation. It's a wonderful cocktail of stuff that is exposing us to a son I feel like we're meeting for the first time. It's a bit like giving birth to an almost 24 year old newborn, full of all the possibility and promise of parenting.
I don't know how much (more) of this unfolding we'll get to see. Is there a point at which the emergence of this "new Noah" will plateau? Will the gears get stuck? I just don't know. But so much--if not almost everything--about raising Noah has been in the I just don't know category that it almost doesn't matter. It's a gift to see this Noah emerge, and to get to know him. And we'll love him not an ounce more or less than that other guy we've adored all these years...
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