Monthly Archives: March 2012

Having a Child with Down Syndrome, Part XXIII: Awesomesauce

Copyright © 2012 Stephen Hawley, all rights reserved.

Dear Stuart,

You’ll read all of this some day.  Maybe you’ll be old enough to understand.  Your mom and dad, like just about every set of parents in the world, really don’t know what we’re doing.  We try.  We fail.  We succeed.  Last week, you were teasing your sister.  I’m sensitive about that as I got teased a lot growing up and didn’t care for it at all.  You and Alice were trying to negotiate what to watch on TV.  You declared that ‘Backyardigans is a baby show.”  I waited until you agreed and then I asked you to come have a talk with me.

We talked about why you thought that and you were pretty frustrated that Alice likes to watch the same things over and over.  I can understand that.  You have always preferred novelty.  When we talked about it more, I asked you how you think Alice felt when she watched the show.  Comforted.  Safe.  Happy.  I asked you about your animal blanket.  You said that you loved it and you were going to have it for the rest of your life.  Ah.  And how do you feel when you have your blanket?  Comforted.  Safe.  Happy.  And do you think that Backyardigans might be Alice’s animal blanket?  And then I watched the light turn on.

You are a precious boy, Stuart.

Having a Child with Down Syndrome, Part XXII: Wish I’d Seen This Earlier

Copyright © 2012, Stephen Hawley, all rights reserved.

I was at the MDSC annual conference today and in scanning the various tables set up, I found The Ten Commandments for Helping Parents of Children with Special Needs By Michele Stiefel.  A casual read makes it look like something for grand parents or other family members.  Reading it closer, I decided that was actually for me and Evie.  It is so nice to simply hear someone else say that it’s OK to feel that way that we do, which may be all over the map on any given day.  Less so now than early on, but we still have our rough days.

The conference was good and it was nice to see the photo I submitted for the conference up on the big screen as well as on the MDSC facebook page.  This year the theme was Style Down Syndrome – an intentional owning and repurposing of a GC article that declared that Boston suffers from a kind of “Style Down Syndrome, where a little extra ruins everything.”  I’m glad to see their constructive approach, including contacting GQ directly.  Dr. Brian Skotko posted a blog article about it that got a fair amount of coverage inviting GC to mock his pants and not his sister. I posted the story to Metafilter and found in the comments that the author of that particular gem is an ex-boyfriend of one of Metafilter’s members.


You Have a Family Member With Down Syndrome, So Now What? Part 3

Copyright © 2012, Stephen Hawley, all rights reserved.

This installment is easy.  Super easy.  So easy it’s sitting right under your nose:

a box of tissues

That’s right, it’s a box of tissues.  Around month 10 (give or take), children start to develop means-end behavior.  This is where they need to overcome a simple obstacle to get what they want.  You can start with a box of tissues.  Put it in front of your child and show how you can pull out a tissue.  Encourage her to pull tissues out.  Yes, you will have tissues all over the floor.  Yes, you will have the problem that you have now trained your child to empty any tissue box.  This will pass.  You are jump-starting language and cognition.  Are they enjoying it a little too much?  No problem – put your child in a high chair at a table and put the tissue box out of reach, but put a towel or cloth place mat under the box so that he can reach it.  Your child will discover, with encouragement, that she can pull on the placement and bring the box to her so she can pull out tissues.

You can get the same effect with a pull toy:

pull toyby putting the string just within reach, your child will learn to pull on it to get the reward of the toy.  You don’t even need a pull toy – you can tie a string to his favorite toy and get the same effect (of course, you as careful parents wouldn’t leave a long string on the toy for play without some supervision).

Also, remember those blocks from part 2?  Time to start presenting and hiding them under a bowl or a towel.  As your child develops object permanence, this will be a very entertaining game (as will be peek-a-boo).