| Not what my family looks like |
A few weeks ago I offered my philosophy on inclusion, illustrated with a picture of Nico dancing in the middle of a circle of musicians. I called it “inclusion, not same-ness.”
Sometimes, inclusion means people with disabilities get to do things that not everyone can do. Sometimes inclusion means that people with disabilities do not do the typical things and don’t engage, but still have a meaningful experience while on the fringes. Sometimes they do the typical things but in a different time frame. And sometimes, there’s no difference.
The key is to keep the goal, inclusion, in mind, and not focus on same-ness. I see lots of people make this mistake in their interactions with people with disabilities (or just people with different ideas of what constitutes a good time). At parties, for example, I have so many friends deeply content to be in a room with other people reading a book in the corner. They are included. They are happy. Check in with them. But don’t push to impose your value of “party” on others.
Mostly, I make this mistake all the time, either explicitly or in my quiet thoughts, sometimes laden with sadness, when I want Nico to find pleasure in the things that please me. And they don’t always. And some may never be a part of his life. And it’s ok to be sad. But what matters is inclusion.
Ellen Lonquist, a therapist and a mother of a boy with Down Syndrome who lives in the area, has written a great piece on What Families With Special Needs Wish People Knew For The Holidays. Here are some excerpts, all of which Lonquist illustrates with quotes from real parents (I know some of them). The first one basically argues for inclusion, not same-ness.
Many families named their wish that people would understand that
their kids don’t always find the magic in the usual places- whether it
be spinning the dreidl or visiting Santa. Many parents have had to
let go of their own wish for their kids to respond to holiday traditions
as they did or their other children do and have had to accept a
different picture- it can hurt to renegotiate this acceptance with every
push from yet another family member. Try to realize that every kid has a
different experience.
That’s certainly true for Nico, and I LOVE the followup quote from the piece, with Lonquist’s own comment.
“Johnny doesn’t get Santa. And doesn’t care,” says Anna, whose 6-year-old has Down Syndrome.
My son, who also has Down Syndrome, LOVES Santa… but he loves all
jolly, grandfatherly men. He loves our local crossing guard with equal
enthusiasm.
Nico likes to go up to men, put his hand on their bellies, and say, “Hiiiiiiiii.” I’m trying to convince him that words, not hands, are appropriate. I have failed so far.
You should read the whole piece as it moves between practical and ways-of-thinking. Here’s one practical note with which I’ll conclude as we head towards the Thanksgiving Holidays.
Safety issues
Many kids with special needs take off when the spirit moves them.
And they take off quickly. “It would be so helpful if people would
secure their houses- doors and maybe dangerous basement rooms. We tell
people they need to baby-proof, but to remember that he has the
capability of a 12-year-old to figure out locks. But they still don’t
quite get it, and then he’s running off into traffic or down the
street,” says Hannah, whose 8 year-old-son has autism. Ask parents about
reasonable interventions to keep their child safe- or be prepared for
them to have to follow their child around all day.
This is one of the most exhausting parts of traveling. This summer we were at my brother’s house and Nico got out the front door. We were getting ready for a walk and the door got unlocked and Nico just walked out and was halfway down the street talking to someone driving in a car by the time I came sprinting down to get him. I live with my head on a swivel when I’m in an unfamiliar place, never quite knowing how Nico will react. I hover. I over-protect. This is why.
This is also part of inclusion, being ready to adapt your environment in such a way that you can include the parents, too, and make them feel comfortable that their child will be comfortable.
I intend some light blogging days over the next week as I’ll be busy hosting Thanksgiving for the first time. But we’ll see. And once there’s video, I’ll show you one of the greatest examples of inclusion, not-sameness, in the history of history, featuring my son at his school performance yesterday. So stay tuned!