Friday, November 2, 2012

Just who is the expert on your child?

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.


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."


I love this man!

Solomon hits the nail exactly on the head: 'The experience of difference within the families is universal.' Exactly! Thanks for mentioning my blog too. I'm glad I was able to give you pause for thought.

What we mustn't forget, though, is that to an extent we ARE the experts of our children. We gave birth to them, we feed and clothe them, we play with them, take them to school, bring them home and read their reports. While they are minors we have to be responsible for them - that's unavoidable.

But then I always think: where would the medical profession be without their patients? We are the ones who educate them, not the other way round.

Even my little girl's paediatrician admits he doesn't have all the answers - we have to go along with her development and see where it leads. But only my daughter would know exactly where she's heading.

Wow... so close to what Judith Snow writes .. please go read this! Same "story" (i.e., point) from the person with the disability ... mind bending... she writes
"...Children labeled with disability come to this world as members of every cultural group that occupies this world. Almost always they are born to parents who are not themselves viewed as disabled. Those who surround them are almost always unfamiliar with the fact that handicappist stereotyping disguises and renders invisible the person's actual abilities and contributions. Their parents have no story to counter the negative beliefs about bodies and minds that function in unusual ways. In fact, their parents may very likely be champions of these stereotypes..." and then goes on to discuss the need for reorienting stories. For the full (and definitely worth the read) piece go to the philia website:

Thanks for this Louise, it was a good read. People are so uncomfortable by differences. I always say, "why did God make us so different, if He wanted us to be the same."

We all have a lot to teach each other about our worlds that we live in, and I know, Ben has a lot to teach us. We need to litsen more, something I try to do everyday!