Abubakar Tariq Nadama was a 5-year-old Maryland boy who died last summer as a result of a treatment intended to cure his autism. I think about Abubakar and his parents, and the choices they made believing they were helping their son. I find myself remembering our own such dilemma, when we put too much pressure on our autistic son, putting him in a very challenging classroom without adequate support, and he fell apart. Although we regained control over him, and in the process, we were forced to let go of our wish to cure him. In the process, we learned a very powerful lesson: If we contort ourselves and our kids to make them into something they’re not, might we be doing more harm than good? Abubakar’s case is extreme, but the question remains: How do we find just the right balance between helping — and hurting?
Even parents of children who are typically developing fall prey to the desire to push their children towards perfection, to develop every possible edge so that they might have it all, sometimes sacrificing their children’s and their own peace of mind and self-esteem in the process. Here in Brookline, not only do the schools strive towards as much parental involvement as possible, parents are heavily invested in their kids’ lives from the beginning. You can sign up your 6-month-old for a program at the Brookline Music School, you can do parent-and- toddler art at the Brookline Arts Center. I know parents who start their kids at piano by first grade, tennis in preschool. Having math tutors and reading tutors is par for the course, despite all the extra support built into the school system. By the time most Brookline kids get to the high school, being almost completely oriented towards achievement is fully in their blood. This is not necessarily a bad thing, except when it destroys something in the child — or the parent.
In parents of autistic children, this drive to push and mold is just as strong. As a young parent in newly diagnosed hell, I completely lost sight of Nat in my desperate desire to cure him. I wanted him to be normal, so I could have the dream child I thought I was going to get. I went around in a haze of pain and rage that only felt manageable when I was taking action. But so many times that my husband and I tried something new with the hope of “de-autisizing” him, we were disappointed with the results. We put him on a special diet during a particularly difficult winter, in the hopes that he would become less aggressive. We had him take medications that boosted his language ability, until they also made him manic and aggressive. In our race to stamp out Nat’s autism, we were unhappy with ourselves, and with him, and we felt like failures. We were also exhausted, and it was difficult to be there for our other two younger, typically developing boys.
The phase of continual pushing built to a crescendo when Nat fell apart when he was 11, and was expelled from his school program for aggressive behavior. We started him on a new sedating medication, and when he responded well, we were sickeningly grateful. It was then that we understood how our goals for him must change, from pulling him out of autism to only managing its most difficult aspects.
But if one light went off, another one went on for us. Finally I understood the simple truth: He’s just a kid, a kid who happens to have severe autism. We could not make him normal. But we still had a child to love and a family to take care of.
Since that time my work has been belatedly getting to know Nat. Like my other two sons, he deserves to be who he is, and not whom I wish he were, no matter how difficult that may be. After 16 years of trial-and-error parenting, I understand that in order to be the best mother, I have to fight my tendency to remake my children in some other image. I have learned, from Nat, that the most difficult parenting challenge is knowing when to push, and when to let them be. The tragedy is not autism, nor is it children who don’t achieve external signs of greatness; the tragedy is children who are not allowed the chance just to be children.
Copyright 2006, Susan Senator