Having a Child with Down Syndrome Part IX: Exciting Windows of Normality

Copyright © 2009, Stephen Hawley, all rights reserved.

Every child is different. Every child with Down syndrome is even more different. Part of this is simple truism. By the virtue of DNA we are all unique, but due to the complications and unusual physical issues that arise, the Down syndrome population tends to stand apart more from each other than many people do. This is at odds with the 2008 National Down Syndrome Congress campaign “more alike than different”, although I think that’s just simple statistics.

At times, it is hard to accept the differences. At times it is extremely frustrating. Alice is a very heavy visual processor. It appears that she is easily distracted, when in reality she is attracted to things that are visually dynamic. It’s frustrating to have to repeat things four or five times with sign to get her to listen or respond. That these circumstances happen several times a day is especially frustrating. It’s the depth of frustration that leads one to crave normality (whatever that is – I don’t honestly know since my family was and is fairly far from normal) or pity or something else. Something, well not something different. At least not different from the rest of the world, something the same as the rest of the world.

And in moments like that there is “normality”. Alice exhibits things that are consistent with many, many girls her age. She loves princesses. She can name all of the Disney princesses. She loves animals and can name a lot of them. She loves her brother and her parents and shows that love in reflection back. One of the biggest slices of normality for her which I cherish is that she loves the Muppet Show. She knows most of the characters, knows the regular segments, and does a few things that make me smile very broadly. When Kermit introduces a guest, Alice does the wavy-armed yell. When the Swedish Chef comes on, she sings along with the theme and finishes with a pretty good “bork bork bork”, and finally when Pigs in Space comes on, she yells “Pigs…in…SPAAAAAAAACE!” I love seeing these things because I relate to them deeply. I did all of these things when I was young and the Muppet Show was brand new and it is a tremendous pleasure to see them coming back to me in reflection. I’m thrilled when Alice stops me and says, “no daddy, yook a Alice” (look at Alice) to get my attention before she does something particularly silly. I love that she enjoys airplane rides and horsie rides as much as her brother.

And in seeing these windows of normality, I do come to see that we are more alike than different.

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