Wednesday, December 6, 2017

Different. But Equal

We arrived at the rec center early and opted to sit in the car for a few minutes to kill time there. I watched people enter and exit the building. The front door is a long way from the rec center. I am envious of women who enter and exit together, side by side, laughing, chatting, wearing exercise clothing. I wish I had a friend here to meet at the gym. We are too new here; I haven’t had time and opportunity to grow friendships.

I saw two men walking the long sidewalk, one behind the other. Their silhouettes provided information. I am an avid reader of non-verbal information. The young man in front was taller and younger, my guess, around 20 years old. The man in back, two or more feet shorter, was older; his features more mature, and his gait told me he has some special needs. From a distance, I saw Down Syndrome.

The contrasts were striking. Not only were they separated by at least two feet in height, one walked three or four feet behind the other. They walked the long sidewalk to the front door to the rec center so differently than all of the other couples I’d seen.

A few minutes passed and my daughter and I headed into the rec center. My homeschooler was taking a class with other homeschoolers. I escorted her to her classroom and found a chair in the lobby and prepared to read books from my tablet for the hour and a half.

And I watched people walk by. People who arrived together – to exercise together – came in side-by-side, just as they had on the sidewalk.

Those two young men walked through the lobby four times while I was sitting there. Every single time, the shorter, older man, the one with Down Syndrome, trotted three or four feet behind the taller, younger man. Not once were they side by side. Not once did their body language say, “We are together.” To me, it said, “I let him come with me.” What I saw was "you can't keep up with me so I won't expect it". One was actively going to the gym; the other, passively being allowed to come along. One trip past me, the man in back was trying to talk to the man in front. Right in front of me, the younger man pulled an earbud out of his ear and turned around to hear what the man behind him was saying. I had not noticed the iPod until then. The younger man in front was shutting everyone out – even the person he’d brought with him – to give his attention to whatever was on that iPod.

The contrasts continued to weigh on my mind. Women entering the facility together walked side-by-side. Equals, even when not close in age. Men who entered as pairs also entered side-by-side. Equals. Mixed gender couples – you guessed it – side by side. Chatting, staying alongside one another, moving together.

I began to wonder who the two young men are. Brothers, I guessed, with the neurotypically developing younger one bringing the older brother with Down Syndrome on his trip to the rec center to work out. Nothing in their body language, nothing in their non-verbal communication said “equals”. Maybe the taller, younger young man is a caretaker or respite worker.

My mind began to wonder. Is this the way we treat my child who is developmentally delayed and on the autism spectrum? When we walk from parking lot to building, do I expect her to dutifully trot behind me? Or do I bring her alongside me, a partner, an active participant? And how do her siblings treat her? Side-by-side? One of us? Or separate, “allowing” her to come along, follow along?

 I think I know the answer to this. We’ve been working on non-verbal coordination and co-regulation for too long. But I want to see. I want to observe myself with her, because, as I watched the two young men, so un-equal, I want to be intentional to make sure my daughter is included, is equal, is walking beside me, beside us. Her job is not to trot dutifully behind. Her job is being a part of. An important part of.

Too many times I’ve stopped in a parking lot, turned around to wait for her, silently, to allow her to notice that we were having a breakdown in interaction, to allow her to realize that she’d fallen behind. I waited silently in non-verbal expectation that she join me, a message that she is an active participant and equal shopping partner with me. Too many times, I’ve stopped at waited during times when she went ahead of me, while I waited for her to shift her own attention and notice that we were no longer together, to wait for her to come back to where I was and join me.

But I hadn’t assessed us lately. I had not observed us lately. How am I using myself to give her opportunities to grow and to experience how-people-are? I want to make something clear. I am not referring to “training” the individual with a developmental disability. It's not "training" - it's offering opportunities. It involves the neurotypical individual slowing down, making room for, EXPECTING the individual w/ DS or autism or whatever to "come alongside", and making themselves "possible" for that to happen. (“Possible” is a term that Dr James D MacDonald of Communicating Partners uses.)

Our kids learn through experience - they need practice through actual co-regulating and coordinating, NOT through prompting, telling, instructing or training. Homeschooling gives us more time with children with special needs to practice “being with”, “being a part of” if we have “being with” on our radar.

When I saw the young men at the rec center, two things happened. I began to self-assess and make plans to keep this concept toward the top of our objective list and I began to compose a blog post in my mind, so that I can share this concept with others. Being intentional to include our kids with special needs means including them in the little moments, too. I wanted to remind you of that. And remind me, too.
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