The Down Syndrome Talk

 

Aaron in Grade 1.

Aaron in Grade 1.

When Aaron was in grade one, he was having troubles with some of his classmates.  The teacher witnessed a group of the other boys egging Aaron on.  They’d encourage him to do silly things or make weird sounds, and then laugh and laugh.  My son happily participated, thinking that the boys were laughing with him.  The sad fact was that they were laughing at him, not with him.

This was the beginning of his social exclusion.

Luckily, Aaron had a great teacher in grade one.  She was seasoned but open to learning more about Down syndrome and most importantly, she believed in Aaron.  She’d seen this Lord of the Flies behaviour before, and suggested that we have the Down syndrome talk with the students, hoping that encouraging understanding of Aaron would foster compassion.

I worked with the school board’s behaviour consultant to come up with a plan for THE TALK.  I had a book that was perfect:  It’s OK to be different by Todd Parr.  This is a super book.  It isn’t specific to Down syndrome, but it talks about all the ways children are the same and different.  I’d recommend it for any classroom that is thinking about having a discussion with their students about any differences.

The day came for THE TALK. I stood at the back of the classroom, sweating and fraught with anxiety.  I spoke to Aaron about Down syndrome earlier in the day.  He was only six, and I wasn’t sure how much he understood.  I told him that he needed a helper in class because he had Down syndrome, and that he was born that way.

The consultant read Todd Parr’s book.  Then she asked the kids how they were different.  Now, this happened to be a very multicultural class, so many kids proudly answered:  I was born in Africa!  I was born in India!  When it came to Aaron’s turn, he said:  I love hockey!  Then the consultant gently said:  another way that Aaron is different is that he has Down syndrome.  She asked the class, ‘what do you know about Down syndrome?’

The first answer came from a boy (who I will call kid #1) who had history of treating Aaron with disrespect.  He said, with great distain:

Down syndrome means you cannot control yourself and that you make weird noises.

I almost passed out in the back of the room.   My worst nightmare had came true.  I had witnessed this boy mock other kids who played with Aaron, asking them:  why do you want to play with him, anyhow?  Of course he had something negative to say about Down syndrome.

But then, something wonderful happened.  Another boy, kid #2, put up his hand.

Having Down syndrome means that you learn differently, and you just need some extra help and patience.

Tears of gratitude sprang to my eyes.  This young boy had hosted Aaron at his house for playdates.  He knew Aaron as a boy, not as just a diagnosis, or someone different to be afraid of.  The consultant jumped on his comment, and finished the discussion in a positive way by explaining that Down syndrome was something you were born with, that it wasn’t contagious, and yes, that people with Down syndrome need extra time and help to learn.  And that was that.

We survived THE TALK.  Aaron didn’t seem worse for wear.  But the kid #1’s comments upset me for a long time.  We pulled Aaron from that school two years later, in part because of a lack of support from the families in the community.  Kid #2’s family ended up moving away, and that was a big loss for Aaron.

I realized a few things from the experience of THE TALK:

  1. Better to explain differences than to just leave them unsaid.  That way you can address myths or misunderstandings head-on, and not let them fester in negative behaviours.
  2. Use a book like It’s OK to be different for the younger grades.  That way you can gently introduce the fact that ALL kids are different, not just kids with disabilities.
  3. With a group of young children, I wouldn’t just throw out an open question about disability and hope for the best.  I think guiding the conversation is less risky – explaining Down syndrome in simple terms, and then asking if kids had questions might be a better tact.
  4. I believe in involving Aaron in THE TALK, but that’s a personal family decision.  Some people don’t tell their kids about their disability, out of concern that they don’t want them to feel different.  Having a kid with a visible disability forces that conversation a bit – we’ve always chosen to be open with him about his difference.  One day, in a discussion about differences, I hope that he can pipe up:  I have Down syndrome as proudly as a kid might say:  I was born in India.  That’s part of who he is, and I want him to embrace his identity.

My most important lesson came from kid #2.   I realized that kids learn their attitudes from their parents.  Kid #2’s mom was an Occupational Therapist and his dad was a physician.  But more importantly, his mom had an uncle who had Down syndrome, so disability was just a part of their family lives.  They had obviously spoken to him about patience and compassion for people who had differences.  I talked to his mom later about her son’s response at THE TALK and thanked her for raising such a kind boy.  Empathy was taught and encouraged in that family.

Kid #1’s comments still haunt me four years later.  Although we moved neighbourhoods and schools, we still run into this family.  Both parents won’t make eye contact with Aaron.  Ironically, the mom is a physician, too, and the father is in a high profile position at the university.  Achievement and status is what’s important to them, not compassion.  I’ve spent many hours of wasted energy thinking about them, and after writing this post, I’ve finally decided to let it go.

Let’s channel our energy into people who believe in our children.  The others simply aren’t worth our time.  Thank you to all families like kid #2’s family who teach their children how to be compassionate and accepting of people with differences.  Those are the kind of people who are going to make a positive impact on this world.

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