Down syndrome in public (Awareness/Education)

So…before we had Caleb, we didn’t know many people with Down syndrome (Ds).  We knew some baggers who worked at Publix, and a couple distant family members, but no real personal contact.  We didn’t know what life was like with almost any disability, much less Down syndrome.  We used inappropriate terms (that’s another post!)  ☹  So when we had Caleb, and had to dive into the world of “disability”, some things were a bit awkward.  

baby with Down syndrome therapy

The first being our birth announcement.  Should we “announce” it?  This was 10 years ago, folks, and still not a lot of public awareness about Ds.  No World Down Syndrome Day, no models, no inclusive ads.  The only role model, really, was Corky (played wonderfully by Chris Burke) on Life Goes On, a TV show in the 90s.  In the end, we decided we wanted to tell people in person, so we didn’t say anything.  His picture was cute as could be.  I tried to pick one that didn’t “show” so much.

new born baby with Down syndrome

Out in public was a different matter.  New babies!  Who can resist?  I warily showed off my baby boy, looking for any sign of question on their faces.  The grocery store, doctor’s offices (lots of those), Target, and so on.  I wasn’t quite sure how to handle questions, but no one really said anything.   

The questions came later, when Caleb turned one, and wasn’t walking, talking, or interacting like a typical child that age.  I wasn’t ashamed that he had Ds, but for me, it really came down to TIME.  Did I have time to educate whoever was asking?  How do you fill a total stranger about Down syndrome in the checkout line?  How do you let them know that your life is “more alike than different”?  So, my standard reply when questioned about his lack of any particular skill was “we’re still working on it”.  It’s still my go-to today (tying shoes, good grief!).  

riding a bike is a big step for any child

As Caleb grew, trips to the playground became interesting. I hesitate to use the word “uncomfortable”, but really, that’s how some of them became.  Typical children didn’t understand why he wasn’t talking back to them; that he didn’t know how to swing just yet, or climb the ropes. I was sad, for a bit.  But that’s really where I had my first taste of advocacy.  I had to learn how to explain to people, both children and adults, that although he was delayed in some areas, it didn’t mean he wouldn’t get there someday.  That he could still communicate, but used a different method (signing) at the time.  That our lives weren’t unhappy, or sad, or less.  Our lives were just different.  I found some people got it, and some didn’t.  And as a parent, I felt I did the best I could to spread awareness in that moment, and move on with my day. 

You will need to have a bit thicker skin, you’ll discover, and be able to listen to some pretty interesting questions. But just like us, who didn’t know much about Down syndrome before our little guy came along, most of the general public doesn’t know much either.  Education is key.  Education and Awareness can lead to Knowledge and Acceptance, to Understanding and Empathy.  Not pity, but perhaps a brief glimpse into our lives, and that of our children’s.  Some people you will reach, and some you won’t.  To that end, we’ve learned to be gentler with people, and give them the benefit of the doubt.  There are jerks out there, yes-ha! But that’s just life.  

As time has moved along, I find that many people who have loved ones with Ds will be the first to ask questions, or talk directly to Caleb himself, as they try to figure out how to break the ice, and gauge whether the parent is interested in talking.  I do the same when I see anyone with Ds!  It’s a club, and a wonderful club at that.  We share similarities and trade stories about our kids.  I love learning more about their children, and hope that they learn from us too.  Having him has moved us out of our comfort zone on more occasions that one, but we’ve learned some wonderful lessons too.  I still certainly believe that we are one of #theluckyfew

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Peace,

Karen


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