I resisted at first the identity of mom with a sick kid, yet I am still in awe of the ways that adversity has of dragging us back into life, into new ways of seeing. Researching, I learned that a baby's brain does not come into the world like a clock ready to start running; it comes in more like a computer ready to be programmed, ready to make itself fit into whatever world it enters.
In the first few months of life, the brain increases neural connections by as much as fifty trillion. These same connections will begin to be pruned away by the very brain that made them if the baby does not have the right kinds of "experiences" and stimuli. Understanding that time was critical, I knew I could not afford to think about my career. It was time to buckle down and get to work to make a future for my son.
I spent every free minute of the day on the floor with him working to stimulate his brain. Sometimes I had to do it in a darkened room, because my son's nervous system was fragile, shutting down in bright light.
Today at eleven years old, my son is highly social with friends calling for play dates. He is creative, intelligent, compassionate, and just finished his first season of baseball, but keeping him that way still takes hours a week, even hours some days. Sometimes I wonder what his life would be like if I hadn't spent those countless hours with him as a baby, if I hadn't brought him to nutritionists or driven him to occupational therapists and physical therapists and the parade of doctors who came not just to our lives, but through our lives.
Listening to a recent speech by Sarah Palin, I felt a strange sense of disquiet, a disquiet that continues to haunt me. As a feminist, I know I should be proud that a woman is in line for one of the greatest leadership positions a human can face in this world. Yet, Sarah Palin's presence in this campaign leaves more questions for me than answers. Most disquieting are her claims to being a "hockey mom," and to be a representative of special needs families.
I've been mulling this problem over for days. How can she do this? Pretend to know our struggles? How can any parent of a special needs child ramp up her professional life right at the moment she should be taking a leave of absence? (Or at least as her husband should, but neither is to my knowledge).
I can't figure out the mystery. Who is dragging their son to all those appointments? Who is talking to him and playing with him regularly to make sure all those neural connections develop properly? (If the brain doesn't receive the proper kind of stimulation, those neural pathways will be lost forever. Scientists now insist that the course of a child's life hangs on these important first months and years.). Who is meeting once or twice a week with early intervention staff to make sure that the family follows through with suggestions and therapeutic activities? And who is following through?
Palin can't know my struggles. If someone had asked me to so much as join the PTO when my special needs son was a baby I would have laughed, (or cried -- probably the latter).
Studies show that many fathers mysteriously become very busy when special needs children are born. The stress of the extra work at home, the dramas of discussion with doctors with its mixture of bad and good news, the new lists of twenty things parents are supposed to be doing, the endless visits to therapists, facing the stressed-out wife in tears by dinner, is too much for some to handle. Work is a safe haven from the chaos of the special needs family life.
But if there is a percentage of parents who retreat to work when they have special needs children, isn't Sarah Palin one of them? What makes the problem convoluted, like something Orwell described in his coining of the term "doublespeak" is the way that Sarah Palin pretends to be the kind of mother who is on the front lines. Instead, she stands on a podium with this child as if he is a trophy of her domesticity, without admitting that she often works 800 miles from her family home, and now will be on a campaign trail for weeks. By doing this, she mocks me and all the parents of special needs children who have given up years of our lives to protect the dignity and futures of our children.
"So are you saying that special needs children are solely the responsibility of mothers?" the feminist in me perseverates. "No! They are not," she insists. "But Palin parades her Down syndrome child at a convention, in an environment wholly hostile to a baby's delicate nervous system. She displays a teenager equally vulnerable, (and quite possibly a teenager who lacks proper guidance), while the baby lies in someone else's arms (ironically, that very teenager), a baby who lies limp-headed, ignored even while being starred at, surrounded by crowds of people who seem oblivious to the truth, that family values have skipped town in the arms of ambition.
(by Patricia Stacey, author of The Boy Who Loved Windows;