I Know My Kids Have Down Syndrome

I think our perception of Down syndrome is changing all the time. Years and years ago these children were put in institutions (and still are today in some countries) simply because no one knew what to do with them. I’m grateful for those mothers and fathers who braved the way and brought their babies home and raised them in a loving home environment.

Now Down syndrome is celebrated. I hear of many parents so excited to welcome their baby with Down syndrome. They’re far and away farther along than I was when I had my first baby with Down syndrome. I cried. A lot.

So much progress has been made in how we treat, educate and interact with people with Down syndrome. It is remarkable. And I benefit greatly because of those who have made it possible.

With all this, though, I still find those that don’t fall in this category of “progress.” They ooh and aah over my children. And yet act like I don’t know my children have Down syndrome. Or others who simply ignore our differences. Being a mother with two children who have special needs has helped me develop some thick skin and now I just roll my eyes. My energies go to so many things I’d rather it not go to them. Perhaps I should be more open with them and gently correct them. Or perhaps I just need a t-shirt that says “I know my children have Down syndrome.” Then maybe people wouldn’t pretend to ignore the elephant in the room.

It’s a tricky thing. We mothers rant and rave that we want our children to be treated like they’re “normal” or equals.  But the fact of the matter is that they’re not “normal” and definitely not equal. I’m pretty sure my kids far out weigh me in many areas of life. In no way are we equal when it comes to their ability to forgive, to show love first, to laugh at the silly stuff all the time.  No, we’re not equal. I have to accept that. I have to accept that they aren’t going to be what other’s call “normal.” That our family is not “normal.” That is our life. I do want my children to be included and to have friends and to be surrounded by people who will love and protect them. Yet I can’t pretend like they don’t have Down syndrome. Because  I don’t want them to pretend they don’t. It’s who they are. And I can’t imagine them any other way.