Thursday, November 5, 2009

31 for 21: Still thinking...

Well, 31 for 21 is over - and I did not too badly, but definitely didn't post daily like I was supposed to. The process of advocating for/about Down syndrome was an interesting one. But I hardly skimmed the surface! On Halloween night we attended a party given by one of Liam's classmate's family. It was amazing. We took Aidan (as a little fireman) for a little while, then he went home to bed with Dad.

After he left I was chatting with another mom and she said that her son (4) was asking why Aidan was crying. Why he seemed more like a baby than a three-year-old. She wondered how she should talk about Aidan and Down syndrome with her response was, "I really don't know." I honestly don't know.

And I don't think I'm alone. This seems to be a struggle for parents of children with Trisomy 21. How do we describe Down syndrome:

1. without being overly technical?
2. with respect to our child?
3. with honesty (yes he's different - difference isn't a bad thing though, right?)?
4. without making a big deal out of it?
5. to our own child once they're old enough to understand?
I'm on a bit of a mission to find answers to these questions. My inquiring mind wants to know: what are your thoughts on the best way to describe Down syndrome?

Incidentally, one mom in our local Down syndrome group said she talks to her son's class every year about Down syndrome, but now her son is adamant that he does not have Down syndrome. She's wondering what to do now.

Also, I asked Kieran how he would describe Down syndrome to a four-year old, and he didn't know either.


Cammie Heflin said...

We've always told our boys' friends that Addy is just like they are, she just takes longer to learn things and some things might upset her that don't upset them. They all seem pretty okay with that!

Michelle said...

I wish I had the answers! I'm' thinking of using the book My Friend Isabelle - you can find it on Woodbine House.

Kim said...

This is a great post and a question that I've had myself. It seems easier to explain to older children, but I myself have wondered how to explain it to the younger ones.