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Just who is the expert on your child?

Posted Nov 02 2012 1:53pm
















I don't expect to find a deep understanding of the complexity of disability in the mainstream. That's why I was taken aback by this piece in The New York Times Magazine: How do you raise a prodigy?

In it, Andrew Solomon draws parallels between child prodigies and children with disabilities -- in terms of how they challenge their parents' preconceived notions of 'normal' and what makes a good life.

And he cautions that common assumptions about what life is like for either group are simplistic and misleading. 

"Having spent 10 years researching a book about children whose experiences differ radically from those of their parents and the world around them, I found that stigmatized differences — having Down syndrome, autism or deafness; being a dwarf or being transgender — are often clouds with silver linings," Solomon writes. "Families grappling with these apparent problems may find profound meaning, even beauty, in them.

"Prodigiousness, conversely, looks from a distance like silver, but it comes with banks of clouds; genius can be as bewildering and hazardous as a disability."

Both of these experiences centre on difference. What may be natural and normal for a prodigy -- or for a child with disability who thinks or moves or interprets the world differently -- is often at odds with the parents' notion of 'normal.'

How much do you try to pull your child in to the world that is normal to you -- and how much do you accept the 'new normal' that your child presents?

This got me thinking about Melissa's blog yesterday, where she wrote about how her daughter Isobel's disabilities are a natural part of her: to Isobel, her disabilities are normal.

I'm always agonizing over my wish to find Ben a better way to communicate. When I read Melissa's piece, it hit me that perhaps Ben's way of being in the world is normal to him (not that he isn't frustrated by it) and that the problem is with my own expectations (i.e. my assumption that my world is 'normal' therefore he must be suffering if he's not in my world).

Melissa noted that her daughter, even as a toddler, is the expert on her disabilities, not her mother.

That's an interesting viewpoint, and I bet one that many parents, if we're honest, haven't adopted. I think most of us feel very much that we are the expert on our child -- even if we haven't experienced our child's disabilities firsthand.

Melissa's comment made me pause. It made me let go of judging the different worlds in which Ben and I live and, instead, motivated me to turn to him for clarity on his world and on what matters to him. And to not be so quick to assume that I know what's best, or that my way of being in the world is somehow richer.

Humbling.

Solomon is a lecturer in psychiatry at Cornell Medical School with a new book -- Far From The Tree -- that comes out later this month.

According to the book description: "Solomon’s startling proposition is that diversity is what unites us all. He writes about families coping with deafness, dwarfism, Down syndrome, autism, schizophrenia, multiple severe disabilities, with children who are prodigies, who are conceived in rape, who become criminals, who are transgender. While each of these characteristics is potentially isolating, the experience of difference within families is universal, as are the triumphs of love Solomon documents in every chapter...

"Many families grow closer through caring for a challenging child; most discover supportive communities of others similarly affected; some are inspired to become advocates and activists, celebrating the very conditions they once feared."
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