When Parker was first born, I was all about Down syndrome awareness. I wanted to shine a light on what it was like to have a medically fragile child with special needs when your insurance only wanted to cover the typical. I wanted to share the day to day of a kid with Down syndrome to help show that it was, indeed, a life worth living.
It feels different now. I want to kick it up a notch by focusing on Down syndrome integration—in the community, in places of worship, in schools…..public and private, as well as in places of employment.
I’ve been reading the posts of new parents of beautiful little ones with Down syndrome and I see what I was writing 11 years ago. And I wonder why. Why are we still trying to raise awareness. Hasn’t enough time passed for people to have become aware? Shouldn’t we now, 11 years later, expect our kids to be accepted within our communities, welcomed in our places of worship, funded and supported within our school systems, and to be seen as competent and hard working employees?
It’s almost as if awareness for me has become more like asking permission. “Please sir, my child has the ability to be educated along side his typical peers. Even the law supports his education taking place within the least restrictive environment. May he please be integrated into a general ed class? Oh, please?”
Maybe it’s just me. But who I was 11 years ago was so sure that today would be built on a foundation of more progress and less segregation. It’s time to move past awareness and shatter PRECONCEIVED NOTIONS of what it like to be a person with Down syndrome, and replace those notions with the reality of what our kids can and are accomplishing. It’s time for the world to keep up with the pace our kids are setting, and not the other way around.
What about you? What changes have you seen? What changes would you like to see more of?