Advice for other caregivers


Well, I think that’s a really good point about “don’t place expectations on them.” But also the converse of that or the other side of that coin is “don’t expect that they don’t want to or don’t love” either. So, don’t just expect that because your child is disabled that nobody wants—your family members don’t want to be. But at the same time, I think it is challenging because everybody has a different ability to deal with disability. I know when I first went to the school even and Ollie was still very young—and again as I was mentioning earlier about those trajectories, like he was sort of looking more normal than some of the older kids at the school who would be screaming, or making loud noises, or moving. And I always… it’s a little bit jolting when you’re in an environment where you’ve got all these, all this difference. And now I’m so totally used to it, and so I kind of just assume that other people can find that as easy to deal with as I do. And I think that… so don’t put your expectations on other people, on your family members. But at the same time, don’t shy away from having a true family relationship because you just have to work at it a little bit differently.

I just want to come back to one thing so I can be specific about it […] about this notion of the family members. So, don’t place expectations on people, but at the same time, don’t under-estimate what their capacity is because one of the things that I think people have a tendency to do—I know I do— is “You couldn’t possibly do it.” Like, “It’s a lot more work than you think.”And you have to kind…again partly being risk averse. “Oh, I can’t imagine that person looking… ” Just release yourself. It’s like, again, these caregivers that we’ve had. These are not people who are professionals in…they’ve not been trained. […] They don’t even know how to change a diaper. One of the young people we have working with us now, a delightful young man, is studying business at the college. And I said “Ever changed a diaper?”

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