August 19, 2011
I feel the soft weight of a juice box bounce off my shoulder, and as I slow down to adhere to the rules of the red hexagon before me, I turn around to confront the offender. I am quickly rewarded with a “Sorry, Mom” and a sweet smile that dissipates the rush of annoyance I’d felt upon contact, and I remind myself that Zach’s four, and not yet the most accurate shot. I look him in the eyes and say “Zach, Mommy’s said a thousand (million?) times that when you’re done with your juice, just put it down next to you, don’t hurl it at Mommy’s head”.
He looks sheepish again and responds “I know Mommy, it’s so hard to remember”, and I think to myself ‘no kidding hon’, as I turn back around to ease into the intersection. It’s quiet for a few moments as I search for songs on Sirius, then the peace is broken by a small voice from the back asking “Mom, is ‘David’ like Justin?”, and I grip the wheel tighter, because this is the first time he’s ever asked me anything specifically about his brother.
Apparently, the question and answer portion of his childhood has begun.
We’d just finished a playdate at my friend’s house, a lovely woman who also has two boys on the spectrum (we’re just all autism, all the time). One of her sons presents much like Zach, and one mirrors Justin somewhat in the trajectory of his development. So far we’ve always gotten together when both of our older, and more affected offspring, are still in school.
But it’s summer now. While I have Justin gratefully ensconced in his eight week program (oh, the happy dance conducted when I discovered the miraculous length of this agency’s summer school would have gone viral on YouTube), my friend’s older son is now home for the duration. This is the first time Zach or I has ever met her eldest, her firstborn who is as sweet as she has claimed him to be. He spends some time with us for a while, participating on the edge of the crowd, uttering the occasional familiar vowel sound that replicates Justin’s repertoire, causing Zach to look at him in surprise.
And I admit on occasion, despite knowing my son was safely in his school, that this elongated “e” made me question Justin’s whereabouts as well.
I bring myself back to Zach’s query, because I want to answer this casually, but carefully. I look into the rearview mirror, take a deep breath and say “’David’ is a lot like Justin. ‘David’ and Justin both have autism, and they both say “eee” often”. I wait for his reply, and I know it will be a few moments as he processes, because he always takes his time with these sorts of conversations.
“Mommy, what is autism?” he asks, a question he’s put to me many times, and one I hope I answer in a manner which he can comprehend.
I trot out “Autism is what makes it hard for Justin and some kids to talk and to play with each other”, which has been my pat response each time. When I taught, I always tried to get inside my students’ heads with the big questions, tailor my answers specifically to information I thought was appropriate, and relevant to them. I’ve adopted this strategy with Zach as well, and I feel so far it’s worked. At least there’s never been a follow- up question before, so in the past I believe I’ve satiated that inquisitive little mind, because his next interrogative has usually revolved around dinosaurs. This time however we’ve moved on to deeper waters, because I hear him say softly “Will Justin ever play or talk with me?”
When my heart resumes beating, I know I’ll have to respond.
I remind him that Justin does “talk” with him sometimes, that his favorite letter of the alphabet often signifies excitement over a new toy he’s showing to Zach, or mere happiness that they’re in each other’s presence. I recall for my last born how we often have “book club” together in the family room, an event in which Justin usually permits Zach to splay at least half of his body across his older brother as long as they’re both cocooned in our “reading blanket”. I continue my narrative with reminders that all four of us now play “chase” at night, a game in which Zach usually wins due to those supernatural speedy legs. I summon these examples as offerings, hoping they placate and sooth, and seemingly, they do. I regard him once more in the rearview, and watch him settle back into his seat and comment, “Justin is my best friend, can you buy me another Transformer?”, which mirrors the split nature of much of our dialogue these days. He appears satisfied with my responses.
At least, for now.
I have friends who are entering the more challenging portion of the inevitable “Q and A”, and I let them regale me with their stories when I can. It seems siblings’ responses represent a wide spectrum in and of themselves, with some very distressed upon learning their teen-aged brother will probably never talk, and others seeming to take their siblings’ differences, and potential life outcomes, in stride. For most families there appears to be a see-saw reaction, one which demonstrates tolerance, irritation, indifference, or sadness, often all in the same day. Not for the first time, I wonder how things will play out here.
And yes, the sibling bond is not the only thing I wonder about either.
Zach asks for pretzels even though he knows I’m driving, and digresses to yet another discussion of the merits of Diplodocus and his favorite, Tyrannosaurus Rex. I relax, knowing once again we’ve returned to safer territory. For the millionth time I wish once more for a guide to help me with the answers to these questions, because I know the tougher ones are coming, a reality as inevitable as the fact that both boys are growing up faster than I’d like. I also have a sneaking suspicion that one day, many of my youngest’s queries will start with “why”.
And your guess is as good as mine as to what I’ll say then.