Susan Senator

I was asked to blurb a great book that is coming out in the U.S. soon, A Different Kind of Perfect, by Cindy Dowling, Neil Nicoll, and Bernadette Thomas. It is a thematic collection of essays from parents of kids with disabilities. Some were moving, some were funny, some were informative. One of the most striking essays was written by a mother of a child with Down Syndrome, who was told by the doctor, “I’m sorry to have to ruin your day, but…” when the child was just born.

This sentence has stayed with me ever since. In some ways, all of us who have children with disabilities have been given that kind of message somewhere along the line. It made me think, however: how much worse does a message like that make things? And, if we are being handed this label describing one aspect of our child at birth or upon evaluation, wouldn’t it be fair to be handed a similar list of issues about all of our children?

I know that is a ridiculous thought, but bear with me. That mom had her day saddened by learning something about her child that she didn’t know; by learning that her child was going to have to struggle, and how; but also, by learning that many in society (including their doctor) would view her child in a negative light.

The first two items are hard enough to deal with: dashed expectations and hardship, maybe physical, maybe mental, or both. But why add to that the baggage of an outsider’s personal issues with disability?

What the doc could have said, instead:

Your child — among her many other wonderful traits, such as a lovely smile, smooth skin, chubby legs, good reflexes — has Down Syndrome, which means that she may have some trouble with X, Y, or Z. We can cover all that at her [whatever] checkup. She would do best with such and such educational approach, and Early Intervention — here’s the phone # of a good practioner, by the way. With the right education and healthcare, she should be able to lead a happy life. Who knows what she may accomplish? But no need to worry about any of that now, right now you need to get some rest and then play with your new, delicious baby.

Or, if doctors and the rest of the world must make us feel awful on top of delivering the specific information necessary for helping a child, then they should be required to tell us all the goods on all of our children. Here, for example, is what my doctor might have said about me when I was born:

I am sorry to ruin your day. Susan is not an easy person to know. She is rarely content. Her nose is kind of long, and her hair is impossible. She will always struggle with her weight — she is genetically meant to be a heavy peasant-type like her paternal grandmother but because of current fashion will have to diet way below body type and therefore be unpleasant to her immediate family whenever bread or chocolate are present. Also, she is impulsive, obsessive, and very hard on people. She can be lazy, too. She cannot do any math above a fifth grade level. She is argumentative. Positives are: she loves beautiful things, she loves to write, she loves very deeply, with her whole heart. Which can also be a negative. Therapy might be a good idea at some point.

Why is it that only the disabilities get the downer report? I think all we really need to know is how to care for this child and help him be the best he can be. All the other loathsome crap can be checked at the door, thank you very much. Life is hard enough.