Disclosure - FamilyEducation


March 03,2011

On Tuesday night Scott and I watched Parenthood, and I cried. I often feel emotional when I watch Parenthood, but it's usually just a welling-up-of-tears and that lump-in-the-throat kind of response. Sometimes the dialogue does me in, or I'm driven to tears because of a particular scene; other times I'm tired and feeling wrung-out and the cut-to-final-scene-with-music-swelling-in-the-background just pushes me over the edge. This past episode centered around Kristina and Adam Braverman telling their son Max that he has Asperger's Syndrome--a form of autism, and as happens to me with almost all the episodes on the show dealing with AS, I cried.

I had prepared myself ahead of time for disappointment; I thought for sure we would see both Adam and Kristina responding in just the "right" way to Max's questions. They would have all the answers, I thought, damn them, this TV Land family with the nice house, the money for private school tuition, their extended family network of close support, and the behavioral aide extraordinaire (although she did quit her job last week). The scene would make me think about what we hadn't done by the book; I would replay our stumbling over the right words, our sense of panic, the tears that choked me when that time came. But instead, the producers and writers gave us a very real scene--vulnerable, suffering, very human parents who make "mistakes" in explaining AS to their son (Adam even uses the word 'disability' and Kristina corrects him) and who are struggling to put it right, to fix his world. 


When L. was first diagnosed, a wise parent of an older child with AS suggested we tell L. about himself when he began to ask questions; when he showed signs that he felt different, or "weird" or articulated confusion and anxiety about the things he was going through. We waited, and wondered when this would happen. We second-guessed so many moments, shrinking from The Talk, dropping our voices when we mentioned AS, hiding the monthly issue of our county's autism newsletter under a stack of mail, where L. wouldn't find it. When L. did ask about Asperger's, a year after his diagnosis, the questions came out of nowhere and caught us unprepared. We should have known what all parents find out eventually: that all the really difficult questions from our kids will come at us when we least expect them. We can script the answers all we want, play our responses back to ourselves over and over, but when the time comes, we will still end up knocked off our feet. 

I often run into parents at our support group meetings who have younger children, and they are wrestling with the question of when to talk about AS with their kids. These parents are still reeling from the roller coaster ride that is always the road through the dark to a diagnosis. There is, of course, no right time. There probably isn't a wrong time, either. Maybe they might end up forced into the discussion, as Kristina and Adam Braverman were with Max, or like we were with L., and we wish so hard that the timing had been better but, in the end, the "right" time ends up being whatever time it is. Because that's just the way it happens sometimes.

What did we tell L.? That there is nothing wrong with him, but that his brain works differently, in amazing, and sometimes confusing ways; that he might see the world differently, too, and that many things that come easily for other people--people like his sister, for instance--might always be more challenging for him. We tried to explain that there are things that T. will struggle with, things that will come easily for L. This is the way it is with all people, with all things. We talked about famous people L. knows and admires (Einstein, Mozart, Bill Gates) who most likely had/have AS, too, and that the world desperately needs people like them, and like L., too. 

If I could have scripted the scene of our own conversation with L. I would have placed the three of us sitting calmly in his room.  L. would be busily working on his Legos, or at his desk drawing. We would have said just the right things, in just the right order, and left L. feeling only interest and wonder at the uniqueness of who he is, who he can be. Instead, I know things didn't play out that way. Somewhere, in the jumbled chaos of the moment that was, I can only look back and hope the message was in there somewhere: that we love L., that he's an astounding person in so many ways. By the end of Tuesday's episode, Kristina and Adam are able to finally have the conversation they wanted with Max--a "do-over" of the one that went so poorly.They sit at the table and say the right things. They take turns talking, and Kristina manages to hold it together, and doesn't cry. More importantly, Adam is able to articulate the positive qualities of AS to Max, because he finally begins to see them himself.

I have tried to let go of so many guilty feelings over how we might have handled or not handled things correctly with L., and The Talk was one of them. But I would tell any parent wrestling with questions of the "right" and "wrong" time, and the "right" and "wrong" ways to talk about a diagnosis with their child, that in the end it will be okay. All the worry and angst and pain will lead you by the hand back to what you knew all along: that at the end of that sometimes dark and winding tunnel that is life after the diagnosis, is your child--that beautiful, brilliant, quirky, complicated, take-your-breath-away, utterly amazing person you are so very lucky to have in your life.