Sunday, November 17, 2013

Interacting with the Public

The world is very welcoming to little children with Down syndrome---that is, for those of them that manage to get themselves born. (But that is another chapter for another day, perhaps, perhaps not). Toddlers with Down's are irresistibly cute (as are all little children), but when they grow up, society is uncomfortable with their teenage and adult hood bodies and minds and most people do not know how to interact with them.

Young persons with Down's often feel socially isolated. Everyone else is connecting by play, by talk or in some game that the young person with Down's does not necessarily understand enough of to participate. Nor do most people invite him to join. The person with Down's, however, likes to be around others that are playing, and what better place than to sit on the swing and swing and swing while enjoying the remote company of the kids playing in the sand or on the grass around him while he just swings on the swing set? He is there, somewhat included, and he is having a good time.

So he swings high. He puts as much effort into that swing as he possibly can. It feels exhilarating to be going through the air, up and down, the air brushing his face, and best of all, when he is really high up, he can JUMP, jump off and land on his feet. And then get back on the swing to start the process all over. What better way is there to spend a sunny fall day in November?

But, say parents of younger kids, he is too big for the swing set, and he swings too high, and he cannot look out for younger kids, and they might get in the way of his amplitude, or one of his jumps.

And then there is the issue that he hogs the swing. He gets on the swing and for the 30 or more minutes that he is there, he will just swing and swing, the same way that when he is at the pool he makes an endless series of loops to the water slide, down the slide, into the water, then crawls out, climbs the ladder, back at the top of the slide, and then the delightful 30 seconds of down, down, down, hit the water, and then up the ladder again.

Other kids may know moderation or be pressured by adults to vary their activities from the swing to the sandbox to the slide to the hopscotch. They need to try it all and they need to let other kids onto the swing. AND  most of all, as Barney the Purple Dinosaur told us all... we need to share--and that includes sharing the swing. 

What parents of typical kids often miss is that the young man with Down Syndrome has 15-19 years experience, and that experience tells him that he prefers the swing at the  playground, and that he prefers the water slide at the pool. He doesn't feel a need to TRY anything else, having already tried it all year after year for almost two decades. The swing is it. And that is where he wants to be. The swing gives him the stimulation his nervous system needs to endure the usual social isolation that he often feels--it helps him forget how hard it is to fit into the world, and how difficult it is to break through to other people who seemingly are all connected, something a young adult with Down's never feels, no matter how hard he tries.

Young adults with Down syndrome are precisely that--young adults--no longer kids--or at least on the verge of no longer being kids, just like any other 17-19 year old. 

But in the minds of the public these young adults are ---"forever kids' in the most romantic sense of that term. They are supposedly children in mind and mentality, and as such they get treated like little kids by most people, as if they fulfill people's nascent dreams of eternal innocence. As eternal children, young adults with Down's get corrected and lectured at, and they get saddled with the expectations one would have of a 6 year old kid--- or at least with the sort of talking to that we think we can get away with when a kid is 6: "It's time to let someone else on the swing, Johnny. You have had your turn."  -- That may be reasonable when you are training your 6 year old that the park is for everyone and that there are people waiting their turns, but you would never do that to an adult who was sitting on a swing, nor for that matter  would we-- (not I at least) would never-- do that to our young adult children. We would let them decide how long to do whatever they are doing (like playing Risk till 1 am). We would not interfere with other young adults at church as to how long they throw a football around, or whether they have spent the whole 30 minutes between the church service and the Sunday School playing tetherball. That is their choice. They can manage and moderate their own behaviors, preferences, and spare time.

So also, I would advocate, we need to respect the young adult who is developmentally disabled. He can manage and moderate his behavior and he needs not only his space, he needs our vote of confidence that when he is not doing something that is dangerous or in some way seriously causing discomfort to others, we need not correct his repetitive behaviors or choices. We need to respect the way he chooses to spend his time-- the way we would any other 17 year old's choices.

Some people are not comfortable having anyone that big playing around little children, but by taking that stance, they have made their own world smaller, narrower, and they have barred another human being from being able to enjoy himself the only way he knows how, simply because they do not understand him or trust him.  

I realize I am advocating for the benefits of one, instead of the benefits for the many. I realize that most people are not only uncomfortable with young adults who are developmentally disabled, but actually scared of them because they are different, because they have near adult bodies, and perhaps they have near adult urges, and perhaps they would do something untoward that we would not know how to deal with or stop.... so the thinking is 'best not to let it happen to start with'. 

But where... if I may ask ... where do these young adults (and later older adults) with developmental disabilities belong? 

Like Shylock said about Jews in "The Merchant of Venice", if you poke them do they not bleed, if you tickle them do they not laugh. 

Where do they belong? Where do any of us belong? Who decides?

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