:) OK, that sounds like a bit of a down title. And perhaps it is.
The past couple of months I have had the opportunity to talk to a couple of different groups about teens with developmental disabilities becoming adults. I am by no means an expert. This is on the job training for me, and the process has been eye opening in many ways. In one group I accidentally brought some people to tears, which was far from my intent.. but I digress. Let me get back to my title.
Developmentally disabled teens experience the empty chairs and empty tables a lot. If you don't know the song, here is a link Empty Chairs and Empty Tables from the movie Les Miserables. In the movie, a young man laments his fallen comrades. In my analogy, I am talking about young men and women who grow up with siblings and friends, and eventually the friends and siblings move on, grow up, and they leave behind empty chairs and tables at home, at school, at church, or anywhere else where the young person with disabilities lives.
In the case of my son Ben all three of his older siblings have moved up, and only Ben is left at home. He often talks about his siblings, of late in particular of his sister, who was the last one to leave home.
A couple of weeks ago, I mentioned in some context a girlfriend of one of his brothers (because I am knitting a pair of socks for her, and one person asked me about the socks). Ben had a violent reaction, "NO," he said. "He does NOT have a girlfriend!!" I would concur that Ben has never met this 'significant other' so to Ben, she does not exist, but more to the point, Ben knows what significant others mean, he realizes how his family has scattered over the past 5 years, and he knows that having a girlfriend will add to that phenomenon. But also, Ben goes to high school, and what he sees in public high school is lots of people who are attached in different ways. I might add, that many young people at high schools in America are not particularly subtle or modest about their relationships, in fact, I would say that relationships (however unhealthy some of them are) are a mark of status in a high school. Ben may not fully understand the nature of these relationships or what they mean, but what he does know is that he does not have a girlfriend, and that the few times he has asserted to a girl that she is his girlfriend, he has been met with gentle (and sometimes not so gentle) rejections of his assertions. He would like to have a girlfriend, simply because it is what most other people have... and perhaps also because he has the same needs and longings as others have, and would like to be close to someone--- to belong to someone, to have exclusive 'rights' to someone, to look important and valuable---just like everyone else.
"Just like everyone else" --- I think this is the key phrase. It is so difficult to be different. We all know that from minor issues we have suffered in life where we were not just like everyone else. Could be physical, could be emotional, could be the clothes our parents allowed us to wear. The longing to fit in, belong, and be accepted is strong in all of us, sometimes even to the point where we join the wrong peer groups just to belong somewhere.
Ben's situation is so controlled for the most part, he is never likely to end up in the wrong peer group. He is monitored both at home and at school to the point where he is not likely to be assimilated in groups that would worry me. What does concern me is the difficulty he has in hanging onto friends. I remember when we first came to Colorado and he was 7. He instantly found some really really good friends. They ran and laughed together, they swang on the swing set, and I think this euphoria lasted about 6 months, perhaps a bit longer. Then the 'normal' kids discovered precisely how much there was to Ben, and they started making fun of his peculiar speech. They would get together with him on the swing set, and then whisper to each other, "Let's run away from Ben", and they would lure him far off somewhere on the grounds and ditch him. They thought it was funny, and I don't totally fault them in that they were more or less innocently exploring their interactions with each other and with Ben, and not until an adult makes it clear how that feels can we really expect them to realize how wrong it is.
This, you may say, happened to my child too, and no doubt many of our kids (special needs or not) have experienced this. The problem for Ben is that it happens again and again and again and again. He is mentally and socially about 6, intellectually about 8, and expressive language-wise about 2. He hooks up with kids readily because he is friendly, he is willing to do what others want him to do, and many kids who have no friends will end up seeing him about and connecting with him for a while. The problem is that most of those kids are yearning to be in an inner circle somewhere where a strong-armed leadership type of kid rules, but they can't quite get in at this point. Ben is second best, but as soon as the opening to the inner circle appears, Ben gets 'trashed', sometimes brutally by the inner circle being out and out mean to Ben, most of the time just by neglect. -- Ben will cheerfully approach the friend (usually someone around 6 or 7) and the kid just shrugs him off. He has better friends now, and there is no longer a 'need' for Ben.
Public schools try to include kids with special needs by generating circles of friends, peers who volunteer to be friends for the day, or lunch buddies or something once a week. It gives our children with special needs a way of being connected.
I recently talked to our church about this, and we are in the process of setting up some sort of "Ben's Buddies" system where different teen boys volunteer to be Ben's pal for the day on a rotating basis, like once a month (it's only about 30 minutes after the service before Sunday School). It involves eating a bagel with him, and being his pal on the playground, playing ball or frisbee or something.
No, I don't totally think there is a cure for the loneliness that many children feel. Many 'normal' kids feel ostracized and different in minute ways that become significant, even defining for them. Developmentally disabled kids feel this too---and I guess this is the gist of my post. They may not have the IQ of an Einstein, but the irony is that nobody is so 'stupid' that they don't know they are 'stupid'. We know when we are being laughed at, even when we don't get the joke. We know when we are unwanted. Person's with Down's are IQ wise somewhere between 40 and 65, but in terms of empathy (emotionally perception) they are quite high on the spectrum, perhaps higher than some of us.
All that being said, as I have mentioned before, if you meet a young adult with Down's, he or she asks very litte. Silent companionship is fine. Just sitting down with him or her with a cup of tea, or throwing a ball is all they ask. I often wonder, when I pick up my son... what communication is enough. After all, if I were in the car with my daughter or one of my older sons, we would be discussing everything and anything. But with Ben, I often just drive the car, put on some classical music (which he loves to conduct to), and I occasionally squeeze his hand. I ask 'closed-ended' questions that he can answer yes or no, so he can actually answer, rather than open ended questions where he stutters and gets frustrated because he cannot answer. -- And we have a blissful quiet but satisfying time together WITHOUT discussing ObamaCare or the War in Syria.
He also loves calendars and he loves knowing what comes next, so often we talk about tomorrow, and I will mention one thing we're doing and he will ask "what next?" and after I mention it, he will again ask "what next?", which gives him a sense that he too can direct the conversation for a while. I also ask him what he wants for dinner (I know, it seems a small thing) and he will mention very interesting foods, and if at all possible, I will get them for him... or if I can't I will mention what we have and he will choose. He loves to help me cook (in fact, we're off to make oatmeal raisin cookies in just a minute here), and I try to let him do as much of the cooking as he can. It is a wonderful way of interacting... but let me say this. Our world is so busy interacting intellectually and verbally, it is quite a transition for me to learn to interact emphatically. Point being, the world is the world, and neither he, nor I, can change it, and talking isn't going to change it. Instead, he and I interact in prayer together in the morning, doing yoga for exercise last thing before bed. We do our daily household chores as a team, always together (I rarely send him off to do things on his own), and through those tasks we affirm each other, we create a pleasant atmosphere to live in, and we affirm that life is worth living.
The rest of the world talks a lot, and Ben can't join that. The rest of the world often plays, and Ben COULD join that if the games were not too rough or too difficult. We play games at his level and we play ball at his level, and my hope and goal is that in his social interactions, I can help some of his peers to discover how to connect with this unique, wonderful, compassionate and fun person named Ben, so their lives can be enriched by all that he has to offer, and that his loneliness in the process may be alleviated a touch in the process.
