What we did and when we did it. Sometimes.

What we did and when we did it. Sometimes. People, places and events to remember.

Monday, October 22, 2012

31 for 21: Explaining Down Syndrome to my Older Children

When Ben was born, Evan was six years old.  Corrie was three and a half.  When the kids came to the hospital to meet their baby brother, we didn't mention Down syndrome to them at all.  I didn't know what to say, and I didn't want them to see their brother as someone who was sick or "less than" or messed up or ... anything like that.  And I really didn't want to cry about Ben while I was showing him off.  They were soooooo excited to meet him. 

I don't think we officially said anything to them for at least the first week or so.  Honestly, I don't remember when we actually talked to them - it could have been a month or two later.  I just remember this irrational fear that someone else would say something to them about it.  I wanted them to hear about Down syndrome from me.

I sat down with Evan and Corrie individually. 

I asked Evan, "Have you heard us talking about something called Down syndrome?" 
"Do you know what it is?" 
"Well, let's talk about how babies are made in a mommy.  Babies grow from part of mommy and part of daddy.  Each little cell has chromosomes that help the baby's body know what to do and how to grow.  Usually babies receive 23 chromosomes from mommy and 23 chromosomes from daddy.  How many is that?" 
"Down syndrome means that Ben got one extra chromosome, so he has ..."
"Right.  That one extra chromosome means that things are a little confused in Ben's body.  He will learn to do all sorts of things, but it's just going to take him longer.  He'll be able to crawl and walk and run and jump - just like you and Corrie - but he's going to have to work hard to learn how to do those things.  So we need to help him!  You can be one of Ben's coaches as he grows."

Note: I don't think it had ever occurred to Evan that Ben wouldn't learn to do things.  I didn't want him to worry about Ben, but I also wanted him to understand why Ben would have therapists and other "helpers" around.

Evan has embraced Ben - and being Ben's helper - enthusiastically!  If Evan is home when Ben is having therapy, Evan likes to sit in on the session and tell the therapist all the things that Ben can do.  He learns the exercises and practices with Ben.

My conversation with Corrie was similar, but I left out all the information about chromosomes.  She just knows that Ben needs to work hard to learn things - and it will take some time.  Corrie has a rougher time with the therapists than Evan.  I try to schedule therapy when Corrie's at preschool, so she doesn't feel like Ben gets all sort of extra, special attention.  Or I save fun activities for her to do when the therapists are here - like playing on pbskids.org.  Corrie likes to participate in therapy, too, but she gets bored.

I think Corrie is more aware than Evan that Ben is not keeping up with other kids his age.  She is more attuned to people, so she notices more.  Evan is kind of oblivious.  As the kids get older, I'm sure we will have many more conversations about Down syndrome.

As it is, I hope that the kids just think of Ben as their little brother - who might need some extra help but will still be able to do things.  I want them to see Ben as more alike than different.  And they do.  I also hope that being Ben's siblings will help them grow in compassion and patience.  I see life a little differently now that Ben is here, and I imagine that Evan and Corrie will, too.

I did look for help explaining things; someone suggested this video.  Evan has asked to watch it several times.  I recently ordered a book called We'll Paint the Octopus Red.  I think Corrie will enjoy reading that one.

Before I wrote this post, I thought I'd check with the kids to see what they could tell me about Down syndrome.  I did not do any coaching or prepping, I just grabbed Evan one day after school.  Here's what he had to say:

I asked Corrie, too, but she preferred that I take a video of her dancing rather than talking.  I might post that one a different day.  :)


  1. Deborah, you are such a super mom and your children are super kids! I love you all and I know God will bless you and Emmett abundantly through your children forever!

  2. That video is absolutely precious! My Ben told me today that we should move to Texas so that he can play with Evan whenever he wants to :) Yes, that extra chromosome makes your Ben extra cute!!

  3. Evan's video made me cry ... what amazing children you are raising! Not at all a surprise :)

  4. Love! We just showed Zoe Evans video to Zoe then explained what down syndrome was. She loved what Evan said! And agrees!

  5. That is the best video ever!!!! I love it!!!! Thank you for sharing how you talked about DS with your kids.

  6. I just replayed this video like 4 times. Evan is so SWEET! I love the way his little voice cracks, but I love more how much he loves his little brother. I think I'm gonna play the video one more time, then I'll stop stalking your posts. Hehe, hope you guys are having a great weekend! <3