An interesting dialogue follows Friday's post about Jennifer Johannesen's book: No Ordinary Boy.
Jennifer notes that her pursuit "of optimal ways of being in the world" for son Owen (that pursuit that I believe every parent undertakes to give their child the richest life possible) was worthwhile and she has few regrets because of it.
But she notes that she could have approached intervention in a healthier way, one that didn't consume and exhaust her and lead to burn out.
"I would have had a healthier/happier time of things if I wasn't attached to outcomes," she says. "And if I'd felt a welcome place to voice the futility I was feeling."
I've found it hard to come to terms with the fact that I can't control the outcome of my son's life; that I may invest innumerable resources in therapy, equipment, life opportunities and one-on-one time but "results," if any, may not be related to the efforts I put in.
I've been told that I need to measure myself on what I put in (e.g. did I make the best possible effort to promote Ben's speech?) -- not what comes out (he never acquired speech).
That's not a common way of thinking in our culture.
A popular platitude is that if you work hard, anything is possible, and that we get what we deserve.
Therapy is increasingly goal-oriented (with our commitment to evidence-based care). For parents whose children don't meet the hoped-for goals, it can seem like a set up for failure.
Do you believe that it's possible to live in our culture and rehab system and not be devastated when our children don't make the progress we hope for?
I wonder how we can change our definition and understanding of rehab -- and our common concept of success -- so that it isn't so black and white, so that there's more room for grey?
How could rehab professionals counsel parents so that they don't fall into the trap of 'more therapy is better' when their child isn't making any meaningful progress?
And finally, how could rehab professionals better 'hear' parents like Jennifer, who says in her book: "I want to cringe, cry, yell when I think of my 30-something self. I worked so hard, and yet underneath it all I felt the futility...I could pick just one thing of the 50 and do only that one thing for 10 years and it would still never be done. It's all too much, and it will never be enough."
How can we, as parents, better speak up?