October 10, 2011

Learning to See

When Moe was diagnosed with autism, I lost him for a while. All I could see was "AUTISM," flashing as a neon sign in bright blinking letters. Although I was repeatedly told Moe is the same kid today as he was before his diagnosis, something had shifted. It has taken a long time for me to learn that what shifted was in me, not in Moe.

In the memoir, Seeing Ezra, author Kerry Cohen reveals the complicated and bumpy process many parents go through upon learning their child is not developing typically. Most of us, upon receiving a diagnosis, immediately jump into early intervention, as we should. But our options are often limited, dictated by standardized assessements that always lead to the same type of ABA and speech therapy, and school districts that may or may not have truly appropriate placements. Beyond those traditional therapies are a host of other options, many unproven, some potentially harmful, and all expensive.

As we dive in to these therapies, wanting only the best for our kids, we spend a lot of time trying to cure and change and forget to learn and accept. What I loved most about Seeing Ezra is Cohen's attitude about Ezra himself. She is uncomfortable from the start with the notion of trying to "fix" her little boy, and the idea that there is only a limited number of years to help him grow.
A lot feel those same hazy pressures that I do: We must do everything we can to make our children normal, to do something fast during the compressed 'window of opportunity.' A lot, like me, want to ignore this notion that there is a brief window in which our children can be helped, but we are afraid to. We're afraid our instincts might be wrong. We're afraid that we really are failing our children if we don't follow the path handed to us, one where all autistic children must participate in forty hours of behavioral therapy every week, receive chelation, and be made into something other than who they are.
Over time, I've started to learn what Cohen shows us so well in this book. We can only do so much. The therapies we choose to try with our kids have to fit in to our lifestyle as well. Our children will continue to grow and develop, even after their fifth birthdays. Don't panic. Move forward. Trust yourself. Grow together.

For me, this shift in attitude happens in little bursts. My language has changed as I talk about Moe, and I don't spend as much time wishing for an autism-free version of him, one that will never exist. Like Cohen, I have unhappy days or times when I blame or feel sorry for myself. But I am learning that "my unhappiness is my own. It isn't his. It isn't his."

If your child is newly diagnosed, reading this book isn't a shortcut to acceptance. We all need to go through the process ourselves. But reading Cohen's words can help you feel better, less alone, understood.

Cohen's story isn't one of miracles. It is one of daily battles, of a failing marriage and a of loss of identity. Like all of us, one day she is full of hope and optimism, the next day despair and questioning. Ezra makes great progress over the years, but continues to have big challeges as well, including a very limited diet. Mostly, this is a story of Cohen learning to remove the neon autism sign and once again see her son Ezra, and in doing so, help the rest of us see him - and our own children - too.


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