At the time I thought this was a bit of an odd question. I can’t imagine the parent of a typical child being asked: “Are you doing enough?”
And implicit in the question is that if we “special-needs” parents only do enough – get our child the right therapy at the right intensity at the right time – our child will “overcome” their disability.
My answer was that most of the parents I met were superhuman in their attempts to get their child the best therapies and support them in every way possible.
I was reminded of that last weekend. One of the parents on the unit told me that she spent $30,000 to get her son private speech therapy. To pay for each one-hour session she had to work one-and-a-half days as a cleaner.
I noticed a Dad who was always here on the weekend. Weekends can be long and slow and a bit sad, I find, at the hospital. There aren’t as many activities going on. Many staff aren’t here and some inpatients go home. It’s lonely. No one wants to be in hospital, but especially not on a weekend, when you expect to be out doing things.
On Sunday as I was about to go home with my other kids I bumped into this dad. He mentioned that he was leaving too. But he was about to walk out to Bayview and begin a 90-minute TTC route home.
I was exhausted and could barely cope with driving 10 minutes home and I couldn’t fathom how this man was about to begin his journey, which would certainly be unpredictable on a Sunday night.
Now I knew what it entailed for this dad to spend the weekends sitting with his son. He didn’t want his son to be alone.
I think most parents of kids with disabilities do more than enough.