When there isn't a happy ending

I’ve been sad recently. It started when I began to look at how to revise Ben’s communication system on his iPod. I got to the section called “Friends” and realized it was a struggle to think of a single kid I could legitimately put in there. You know, a friend that Ben sees on a regular basis. That led me to recall the day almost 17 years ago when Ben was three days old and we met geneticists who told us he had a good chance of having a syndrome. As we tried to hang on to our hope, my husband asked: “Will he still be able to run and jump and play with his friends?” Ben has never had the strength to run or jump, but it’s his lack of friends that makes me sad. I know he loves the idea of friends. One of my cherished memories of him is as a young child waiting by the window, signing “friends?” on the day of his birthday party. In those days, there were kids who came.

A student in his class this year did give him a Christmas present – a video – and I made a note that we should call him and have him over. He came to Ben’s birthday party last year.

But as Ben heads into his 17th year, it strikes me that he’s one of the kids who won’t have a happy ending (in the traditional sense). You know how people like to hear stories about children who defy the odds, who ‘overcome’ their disabilities?

Somehow it’s not good enough to simply be an ordinary person with a disability. It’s as though the value of a person with a disability hinges on them doing something considered exceptional in the typical world. “He may have a disability, but look what he can do!” I’m sure that most of you can recall well-meaning people telling you stories of kids like this when your child was first diagnosed. At the end of the day, it all comes down to what people can ‘do,’ doesn’t it? Not what they can ‘be’ in the lives of others, but what they can ‘do’ to acquire status in the world.

My son won’t be able to ‘do’ any of those things. I’m not even sure that he wants to, if he could. He’s quite happy in himself, as he is.

Perhaps it’s because he’s nearing the time that other kids his age would go off to university and launch their independent lives that I grieve for him. Or perhaps it’s because I clearly recognize that there will be no 'breakthrough' in his development. That no matter how much time I spend working on his iPod or reading with him or buying him workbooks or making him secret messages he can decode on the computer to improve his keyboarding skills, there isn’t going to be a leap in his progress. Or perhaps I feel inadequate to create the meaningful life for him that rests on the shoulders of parents like me.

I mentioned this to one of our BLOOM bloggers – Amy Julia Becker – and she responded by saying: “I love hearing about the ‘amazing’ people with Down syndrome, but I love even more when I hear about the normal people with Down syndrome. The ones who just live their lives as everyday people, with challenges and delights. If only we as a culture could recognize their contributions instead of ranking them.”

I read a moving column in the New York Times Motherlode blog by Susan Senator, author of “The Autism Mom’s Survival Guide.” It’s called This Little Light of Mine. It describes an epiphany she had about her son Nat’s obsessive worry with diminishing daylight in winter – especially when the streetlights hadn’t adjusted. “For so long I made the mistake of believing, like so many people, that someone with autism could not connect with other people,” she writes. “That because Nat did not show how he felt about me in all the familiar social ways, that he did not care about me. But the streelights panic eventually showed me I was wrong. Nat watched me like a hawk during those times – he who couldn‘t sustain eye contact – hungering for me to say something, do something about the lights. It dawned on me that this could only mean one thing:…Perhaps it was actually his profound attachment to me that made him believe I was all-powerful, responsible for the lights and everything else around them. Perhaps it meant that Nat – though profoundly autistic – was deeply connected to me, after all.”

This change in how she viewed her son – “my openheartedness,” she says – led Nat to relax and be more easily reassured. “This shift, this growth for both of us has changed everything – because he can manage his feelings. I feel a new confidence, as if it’s okay for me to hope for things...” The author imagines her son eagerly waking for a day at his day program, where he may carry meals to elderly people. And while her son may not look to see the smiles of the recipients, she now believes he will feel them, building on the attachment he’s learned is there in others.

It’s a beautiful story. And I thought – maybe I’ll get there one day. Where I feel hope for Ben’s future, his adult life.

But then I couldn't help wondering whether Senator’s son wants to go to a day program? And if he wants to carry meals to the elderly?