There is a new television show called “Born This Way” that a number of people have been asking me about.  Have I seen it?  What do I think of it?  I hope I don’t disappoint people who think I might be interested in it when they talk to me.  First of all, I’ve always felt that our situation was very unique to us and our time and place and the configuration of our family.  Second, the young adults on the show are mentally so far ahead of my son that it isn’t really related to our experience even though my son also has Down syndrome.

When my son was born a great friend who also has a handicapped son (though not Down syndrome) advised me that “it gets harder when they begin to know that they are different”.  I can see how that might be true but over the years it’s become clear that my son isn’t likely to develop that awareness so we haven’t had to live that experience.  

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Joe waitingIt broke my heart though as I watched a bit of the show “Born This Way” where a mother had to explain to her daughter about her limitations as far as work and family.  Other people may be able to watch the show as a curiosity but I felt that mother’s pain so much and the pain of that sweet girl as she wiped away tears.  Where is the explanation that could satisfy?  I am so glad my son will not feel that pain.

There was a time when we went bowling once a month with a group of wonderful people and their Down syndrome children.  Our son hated it, because of the noise.  We had so much fun with them that we even went a couple of times without him but that didn’t really make sense, so now we see them only at an annual Christmas party which we go to 100% for our own enjoyment.  The “kids” in that group are about 10 years older than our son.  

They’ve always been way ahead of him and are in their 30’s now but he’s still at a much lower level of social development than they even were when we met them.  One girl was so excited to tell me once that she and another young man in the group had been married.  “We’re married . . . just as friends,” she said.  They were able to live together in a supervised setting but without the skills needed to manage a marriage it hasn’t worked out.  Although painful for everyone, the parents were right to try it.  You want so much for your son or daughter to have every experience that interests them even if it is complicated.  

I can’t say what will interest my son in the future.  For now he is happy with his crayons and his papers.  I know he feels affection and that he loves our family very much.  I will also say though that on a recent morning after he’d waited in the driveway for the school bus I noticed he blew a kiss my direction as he was climbing on.  I smiled to myself about his sweetness as they drove away until I realized that the angle of his regard meant he was blowing that kiss to the trash can.  He is who he is.

Down Syndrome Days might be different but still sweet

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He stands alone in my mind as a singular and magnificent individual.  On his own mission through life he may not be able to fascinate enough for reality TV but he’s plenty fun for me, keeps me guessing, and is always interesting.

About Jane Thurston

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