A piece by the site's editor, Louise Kinross, resonated with me on two scores. One - she refers to a Charles Dickens novel she had just read and I'm now in the middle of, "A Tale of Two Cities" (started and stopped in the middle 40 years ago). And two: she describes that nagging tug-of-war between "working" with her disabled child every waking minute and just lovingly hanging out with him.
And that sums up my relationship with C... an endless round of interaction designed to spur her to progress. And it is never, ever enough, of course, so there's the attendant guilt too.
Here is Kinross on that compulsion:
My son Ben was born with a rare genetic disorder and over time we learned he had many disabilities. He’s 15 years old now, and we’ve spent most of his life trying to get him to do things he simply can’t: to grow, to hear, to speak, to write... We live in a culture that values constant self-improvement. There’s always something to be worked on, some future state that will be preferable to the one you’re in now: a time when you’ll be happier, smarter, richer or more youthful.
I think that value seeps into the world of children’s rehab, and makes it hard for parents to feel blessed with who their children are, just as they are. We’re so busy “working” on things with our kids, trying to turn every interaction into a therapeutic one – that we can lose sight of their inherent wholeness.
I used to long to read a book with Ben just so we could sit together, he in my lap, giggling at the funny parts – and not because it was a way of squeezing out one more word attempt. But time was ticking, and he wasn’t meeting his milestones.
There’s a push and pull – especially early on – between wanting to accept our children for who they are and wanting to make the disability go away... [more]But stories of children who confound their doctors and arise, speak, walk, communicate and other such miraculous feats keep appearing.
Here is a video clip documenting the awakening of one such child. If you were considering letting up on the work with your child, this will re-charge your batteries with hope.
Her name is Carly and there's more here.
As for therapizing and acceptance co-existing, Kinross discusses our dilemma with philosopher, humanist and theologian, Jean Vanier.
Kinross: My son is 19 now, and sometimes I’m tired of the pressure to always be working on things with him. I feel that I miss out on enjoying the moment.You can read the full interview here.
Jean Vanier: What I hear also, and I find it beautiful, is taking the time to enjoy the moment, to be together, to have fun together, so that he discovers that you love him—not because he can change and be better, but just as he is. To rejoice, to be together, each one of us as we are, that is fundamentally important.