31 for 21 Day 4: Siblings

I received a question from Lisa today.  "It would be interesting to read a blog post for this month on the interaction between siblings in your house---how Down syndrome does or does not impact the boys' relationships, how their relationships with Micah or with each other ...continue to grow and change. Do they resent Down syndrome? Do they ask lots of questions (I'm primarily thinking of Nathan here, of course). How do you approach treating them "equally" when Micah needs things that the others do not?"

It's an interesting series of questions and I've often wondered about this too.  So, I'm going to just process the answers while I'm writing.

As far as Down syndrome impacting their relationships... About a year ago, Nathan told me for the first time that he loves Matthew more than Micah.  That really stung me hard.  I had to remind myself of the following: Matthew was running (Micah wasn't even walking).  Matthew plays with Nathan (Micah wasn't interested in playing WITH Nathan).  Matthew wants to BE Nathan (maybe providentially, Micah couldn't care less and doesn't imitate anyone, much to my chagrin as it relates to eating, drawing, etc.).

So I guess that means that Down syndrome has somewhat "delayed" a peer relationship between Nathan and Micah.  Nathan will now occasionally slow down enough to play with Micah.  But Micah has no interest in the typical boy tackling thing.  I'm guessing that a good part of that is related to his poor vestibular processing (google it if you're interested... can't really describe it fully right now, but it affects Micah's balance and "gravitational security").  He also isn't a big fan of touching things... anything... so that includes his brothers most of the time.  Here's an example:

I didn't post these pics after I took them because it looked like Micah was not included with his brothers.  Sadly, that is usually by his own doing.  Don't get me wrong... they LOVE Micah.  And they are playing together more often these days.  It usually involves a ball.  And Micah is starting to find it funny to intentionally throw the ball so someone else can't catch it (then he says, "I funny" and laughs hysterically... class clown in our future).

As far as I can tell, Micah's brothers don't "resent Down syndrome."  I tried very hard to involve Nathan when Micah was little and had therapists coming over to the house to work with him.  And Nathan was pretty little when Micah was born and he was only 2 1/2 when Micah had his open-heart surgery.  That said, life was much more complicated back then (esp since Micah was on continuous feeds on his feeding pump).  We tried to NEVER say, "No, Nathan, we can't do that because Micah ____." (fill in the blank).  I've always taken Nathan out every week for a lunch date, just the two of us.  We have been blessed with help so that I've been able to do that.  I now do the same thing with Matthew (much easier now that Micah is in preschool and Nathan is in Kindergarten).

Nathan hardly ever asks anything about Down syndrome.  I think that's primarily because Micah was born when he was still young and doesn't know anything different.  I'm sure the questions will start coming more frequently as he meets new friends in school who do not have a sibling with different abilities.  We went to a birthday party for a friend last weekend and on the way there, Nathan asked me, "Does K have Down syndrome?"  I told him she does.  He said, "Oh."  That was the extent of the discussion, LOL.  In the spirit of the research, I just asked him what he thinks it means that Micah has Down syndrome.  He said, "It means he grows slower."  That's all I got out of him. :-)

I'm sure there's wisdom in why the ARC runs "Sibshops" for kids who have siblings with "special needs" and the Sibshops don't start until age 6.  I'm guessing that's when they can really start to verbalize any potential issues.

Brian Skotko's group (Children's Hospital in Boston) just published the results of a survey.  Here are some highlights:
The study evaluated responses to similar questions from 822 brothers and sisters age 9 and older (estimated response rate, 19 percent). Of the siblings age 12 and older:

• 94 percent expressed feelings of pride about their sibling
• 7 percent felt embarrassed by their sibling
• 4 percent would “trade their sibling in” for another
• 88 percent said they felt they were better people because of their sibling with Down syndrome

Of siblings aged 9-11:

• 97 percent said they loved their sibling
• 90 percent felt their friends are comfortable around their sibling

Good stuff.  If you want to read the whole article, you can find it here.
Thanks for asking, Lisa!