Susan's Blog

Thursday, February 9, 2006

Disability Baggage Check

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.


I could hug you!!! And I hate hugging! *grin*

Shortly after Alex was diagnosed, I had to see my GP for some minor problem. He wrote out my prescription. ‘I read the report’ he said, glancing at Alex. ‘I pity you’

If I had known what I do now, I would have replied with some pithy retort along the lines of a heavily sarcastic ‘Thanks for that… while you are wasting your time in that way I will go on with the business of finding the information I need to raise my son’. But I wasnt, and just flinched, instead.

Apart from being totally unnecessary, such a reaction from doctors etc is just plain wrong!

— added by bethduckie on Thursday, February 9, 2006 at 1:58 pm

This is a terrific post. You’re right, completely right.

— added by Denise on Thursday, February 9, 2006 at 6:21 pm

What a wonderful thing to say.

If I hear one more nurse or doctor give me that look after they see my Harry, I think I will scream.

Harry has a wonderful sense of humor, a stubborn disposition, beautiful brown eyes, a talent for drawing and legos, loves hamburgers and will be a fantastic engineer. Oh, he has autism too.

It’s one of the things that make up who he is. No pity. He is the best of my world. I actually pity those that don’t know him. All of him 🙂

— added by Kathy_WebMD on Thursday, February 9, 2006 at 6:30 pm


I was just talking to the main pediatrician for the MIND institute last night. We were talking about what pediatricians in general can do to make it easier on parents, not making them targets for the most outrageous quack cures, for one thing… She said something like, “the pediatricians need to listen to the parents (about the parents feelings)” If I remember right, I think the pediatrician was saying that it helps to keep the lines of communication going between the parents and the doctor…

I said, Kathleen Seidel is saying that same thing, also, they’ve got to stop giving the “worst case scenario” prognoses to the parents because if they say, “your child is a write-off, a total loss” then the most extreme attempts at quack cures seem reasonable. The doctor totally understood that.

But, I said, the doctor needs to say besides the straight diagnosis, “You’ve got a GREAT kid there!”

The pediatrician didn’t seem to hear that. S/he said, “We can tell the parents that the best treatments are behavioral and educational and that they give the best outcomes.” or something like that.

Yeah. I understand what s/he meant, that education is the evidenced based treatment, etc, but I want to hear the doctors say, “You’ve got a GREAT kid there!”

Which is different than what the pediatrician said, “we can mitigate the child’s problems.”

Anyway, thank you so much for this blog entry. It’s very sweet and right on.

When my handicapped child was born (had an obvious handicap) a few days later, while standing in an Neonatal Intensive Care Unit a few feet from my precious baby, a doctor informed me, “we have prenatal tests now, you won’t have to have another one like that one.”

Actually, he said it much more indirect than that, but I coulda killed him nevertheless. Not really killed him, but close.

I loved my child and he was saying that I probably would have chosen not to have xyr if I had the chance, that xyr life was not worth anything. What a dork. (still mad and it’s been 25 years)

— added by Camille on Friday, February 10, 2006 at 1:34 am

Thanks for the really great thoughts. It is amazing how intolerant the world is of special needs children.

— added by Lisa Brewer Canter on Friday, February 10, 2006 at 1:58 am

A huge thank you to Susan and to everyone who posted these great comments! It’s so true that doctors need to change their attitudes and to understand that there is no such thing as a “perfect” child. The medical profession is responsible for so much of the intolerance we see nowadays.

They’ve even convinced the National Institutes of Health to fund eugenics research to develop a prenatal test for autism, as discussed in this article.

We have to keep writing and advocating to change society’s attitudes, to put an end to the prejudices, to make people realize what is going on; routine abortion of autistic children is only a few years away, and as I’ve said before, the clock is ticking.

— added by Bonnie Ventura on Friday, February 10, 2006 at 10:47 am

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