About a week ago I wrote about how I've recently read things that made me question myself as a parent and advocate for my son. The first applied to my writing / blogging about him and the second is about inclusion.
"Perspectives on "Most Integrated" Services for People with Developmental Disabilities" - John 0'Brien (2006)
The article seems to be written with an intended audience of service workers, but the theories involved would apply to parents/caregivers as well.
The section on "positive psychology" talks about how, in recent years at least, many if not most people who have developmental disabilities have a "pleasant life."
Positive psychology is just one of the five different lenses this article uses to define "most integrated." It's a really interesting read - and has certainly caused me to think.
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I know Josh is happy.
Like everyone else, his life isn't perfect, but he knows he's loved and appreciated. I've worked hard to make sure he does things that he likes to do and feels comfortable and safe with his routines.
We do things together - there's no place or activity that I would consider excluding him from based solely on the fact that he has Down syndrome. One of his favorite things to do is see a live band play - sometimes that means at a bar. I use the same criteria I use for myself in determining whether it's appropriate for us to go.
Is he the "most integrated" he can be?
Sometimes I feel like we live in a fishbowl
I don't know the answers to any of it right now. I guess I'm writing this just to say - I don't know. We're all learning and growing with our kids, no matter how old we are. I'd love to hear any comments / suggestions about how other families balance their own lives with the "duty to represent."