We promised my youngest son we would take him to a fancy hotel and a fancy dinner as a celebration of all that he did to get through his first month of school.
Heres some of what he had to do.
He had to navigate the stress of spending 6 hours a day surrounded by people … students and teachers and therapists …who do not understand his sign language.
He had to adapt to a grueling schedule of 1-2 hours of additional speech, occupational, and physical therapy, AFTER he gets out of school each day.
He had to survive the sensory assault of classrooms, lunchrooms, and playgrounds.
And he had to learn to thrive in a world where he had to wear socks. For 2 years of the pandemic, there was no need to wear socks. When socks are like ”nails on a chalkboard” to you, this is no small feat.
As we were getting ready for bed, I could see the corner of the Scott Street Bridge, lit up in Blue and Yellow to commemorate the fact that October is Down Syndrome Awareness month.
I’ve always struggled to define what Down Syndrome is. Sure, it’s 3 copies of the 21st chromosome, but what does that mean for my son?
When we talk about raising awareness of Down Syndrome every October, what are we raising awareness of, exactly?
The fact that he is non-verbal isn’t a function of Down syndrome. My son doesn’t suffer because of Down syndrome..
When it‘s the three of us in our little family, I can’t see Down Syndrome.
Any more, I can only see Down Syndrome in the eyes and body language of other people with whom we interact.
I see Down Syndrome in the barriers society erects to my dons full participation.
Everything my son did to reach this milestone – to thrive in a fully inclusive mainstream public school – was an effort to adapt who he was to what society would need him to be in order to accept him, even in a limited way: the precious. the angel.
Except for a handful of therapists and administrators, society made little effort to adapt to him.
I have been thinking that maybe Down Syndrome awareness month isn’t for those who have Down Syndrome.
Instead, maybe it’s only for those who don’t.
Maybe its a chance for those of us who don’t have Down Syndrome to see people with Down syndrome out in the world, and to realize we can stop erecting barriers to block people with Down syndrome from a full opportunity to participate in the same society as the rest of us.
In that spirit, let me ask you a question as you look at these pictures: in the photos of this celebration of a milestone, which ones show you Down Syndrome?
Click on the first photo to see the photos with longer captions in gallery format.