My kid has Down syndrome, thank you.

Yesterday Reed, Parker and I, along with enough medical supplies to bring a pack horse to it’s knees, sat in the waiting room of our Pediatrician.  To keep Parker occupied I stood next to him on  a stool as he looked at the fish swimming in the gigantic aquarium.  We pointed at the fish, naming the color of each one.  After a few minutes I looked up and saw a little boy, about Parker’s age looking at Parker through the glass on the other side of the aquarium.

I smiled and waved.  It wasn’t long before this little boy came around to our side of the aquarium, sat down, and promptly started staring at Parker.

Some Mamas may have been offended by this. I wasn’t.  Kids are often totally mesmerized by Parker’s trach and the oxygen bottle he’s connected to.  They are also facinated with someone who speaks in a language they can’t understand.  Parker and I had been signing fish and the colors to describe them.

As I smiled at this little boy, I shared Parker’s name and explained that Parker loves making new friends but is sometimes a little bit shy and it might be easier if he said hello first.

As this handsome young man waved at Parker I explained that Parker didn’t talk the way many of us do, instead he signs.  I showed him the sign for fish and a few colors as he scooted a little closer to Parker.  I’ve found that most, if not all kids, love learning a few signs and it makes a great bridge between the typical kid and the one with special needs.

A child with Down syndrome

My goal is that as Parker gets older, as he gets healthier and his skills increase, that he’ll no longer need a bridge, but will be able to find his own way to take that first step into his community.

Sometimes new friends will ask about Parker’s trach right off.  Other times they wait awhile.  I take the cue from them sharing when they ask.  I answer them simply by telling them that Parker’s trach helps him to breathe.

It wasn’t much longer before Parker’s name was called to go back to see the doctor and as we left I said goodbye and while Parker would have offered up a high five, knowing that he is brewing something funky in those sinuses of his, I figured it would be best not to share.

I’ve had this sort of conversation a hundred times with kids who are curious about Parker.  I spend a few minutes answering questions and acting as a bridge until things take off on their own.  And they do.

It’s not that much different than when I lived in Germany and had friends who were foreign exchange students there.  They acted as my bridge with their German friends until my language skills were to the point that I could make it on my own.

My child has an extra chromosome. One more chromosome than is typical.  Not a rebel chromosome.   He’s not a Downsie, or even a Down syndrome child as I’m a huge believer in people first language.  Parker is a little boy with Down syndrome.

First and foremost, Parker is a little boy.  Yup.  Just another kid on the block.  A kid who has his own unique challenges.  A kid that breathes through a hole in his neck and eats through a hole in his stomach.  That’s part of what just makes him Parker.

We ask the public not to use the r-word.  We ask them to respect and include our children for who they are.  We set the example for this by how we share our children with the world.

When less emphasis is put on the diagnosis and more is put on the ability, that is when better strides will be made in the inclusion of my child into the world at large.

 

 

 

One Response

  1. Chris May 3, 13
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