A word to the wise to those of you dying to ask a parent of a child with Down syndrome, spina bifida or an open neural tube condition if they had prenatal testing: Don't do it. Bite your tongue. Shut up. Swallow it.
Because what you are really asking us is, "Why didn't you abort your child?" And, similarly, "Why is this child even alive right now?"
Believe me, justifying the very existence of our beloved children hurts. It will not gain you any brownie points on the playground or when I'm writing up my Christmas card list.
A while back, funny things were happening to my son, who happens to have Down syndrome, in his preschool class.
Aaron went to his neighbourhood preschool, not to a special-ed site. I believe that inclusion in his community is the best thing for him. As his mother, I make decisions based on what is best for him. Other families make other decisions for their children. I'm not into judging since I got thrown off my pedestal of judgment when Aaron was born six years ago. But inclusion is the choice for us.
The problem with inclusion isn't with the children. It is with a select few parents, who grew up in the era of special-education schools and segregation. They are scared of my kid. And they pass that fear on to their children.
A kid came up to Aaron, and shouted in his face, "Why is Aaron different?" (For some reason, little kids like to shout when they talk.)
Fair enough. We are all different, kid. Some kids have glasses. Some kids have dark skin. Some kids have earrings. See what I mean? This is easy enough to explain to children.
But then another kid said, "My mom says I have to be nice to Aaron because he is different."
Now, this is a comment coming from a parent, through a kid. We don't want your faux sympathy, folks. We want our kid to be accepted as part of a diverse classroom. With different skin colours, genders and abilities. Is a kid going to shout in another kid's face, "My mom says I have to be nice to Johnny because he's black"? I hope not.
But intellectual disabilities or developmental delays or mental differences are the last stance for discrimination.
I sat down and wrote a nice letter to the preschool parents. The teacher, who has been nothing but welcoming of Aaron over the past two years, happily handed it out.
The letter explained Aaron and his family. How he is the same as other kids. How he likes construction trucks and swimming. How we are all different in this world. Read between the lines and what I'm saying is that there is no such thing as perfect.
After the day we handed out the letter, a mom stopped me in the playground on my way to my car. She chit-chatted a bit, then said she was surprised by the letter. I said I was hoping if I explained a bit about Aaron it would help foster understanding. I was thinking she was the one who told her kid she had to be nice to Aaron because he's different.
Then she got to her point. She really wanted to know why I didn't get prenatal testing.
I looked at her, puzzled. It seemed like a funny question to ask, and staggeringly inappropriate to boot, but I had been asked it before. It was in a mom-and-baby yoga class when Aaron was only four months old. The sting of it then had not lessened almost five years later.
I thought, rationally, "Here's your chance to educate - I am an ambassador against ignorance." I answered her cheerily, "Well, testing wouldn't have changed my pregnancy outcome, so I turned the testing down."
Out of the corner of my eye, I could see my car in sight. It was my escape hatch, but it was several metres away. I had to immediately extract myself from this conversation because I felt as if I was floating above my own body.
I said my (pleasant) goodbyes and motored to my vehicle as fast as I could in the winter snow. I slid into the driver's seat, slumped over the steering wheel and burst into tears. I'm not much of a crier. But it was as if I had been slapped.
I continued crying all morning in parking lots in between running errands. I cried in the coffee shop drive-through and in the grocery store lineup. I had to bite my lip to prevent the tears from falling down my face in public.
Why do I have to justify my son's very existence? Why isn't it okay that he's alive? What are you afraid of?
For those of us who have children whose extra chromosomes could have been detected prenatally, it is a long and lonely road. We get asked these questions. We get frantic calls from friends who are considering amniocentesis because their triple-screen prenatal test has come back elevated. The whole genetic testing thing is fraught for parents who have kids with disabilities.
One day it won't just be "us." With the clever mapping of genes, there may be tests for all the lovely imperfections of life that make us human. All in the quest for the blue-ribbon baby.
What I should have asked the mom in the playground was, "What if your daughter was in a car accident tomorrow and had a brain injury? Would you love her any less?"
When you can answer those questions, I will answer your questions.
Sue Robins lives in Edmonton.