The Disability Community Needs Grandparents Like These
I spoke with the Massachusetts Down Syndrome Congress Grandparents support group this week by Zoom, and what struck me most was that they all just want a good future for…
Disability and Suffering Are Not the Same
Disability and suffering are not the same. I was so disappointed to read John McWhorter's misunderstanding of disability in the NYT. He wrote: "To say that someone “has” a disability…
Helping Kids With Disabilities Move Toward Independence
For the moms who feel like they aren’t doing enough to help their kids (with disabilities) move toward independence, here are a few things I’ve learned: “Not enough” is never…
Disability and Self-Care Skills: Nail Clipping
“I have never known a person with Down syndrome who could cut their own fingernails.” I heard these words, and my stomach fell a little bit. I had just asked…
2014 | Photo by Phil Dutton
I’m Working on a Video Teaching Series About Disability and Family
Sometimes the future comes at us like an assault. A tornado of unanswerable questions that suggest chaos is about to ensue. That’s what it felt like when Penny was diagnosed…
Playdates and Disability
When I had a chance to talk with NBC News about parenting kids with disabilities, I was asked about playdates. Here, in a nutshell, is what I wish parents of…
Turning 18 and Guardianship Decisions
It’s a big deal to turn 18. For every teenager, that birthday marks a transition to adulthood. For kids with disabilities, it carries even more weight, especially as it connects…
Idolatry of Intellect
I didn't realize I’d gone into the hospital with a set of expectations, but I had. I very much had a set of expectations about who our child would be…
Bureaucracy and Disability
One of the things they tell you when you're a parent of a child with disabilities is that the bureaucracy is going to be awful. I thought it would be.…
Penny Turns 18
Our daughter Penny turns 18 today. She’s not at home with us, as it turns out. Rather, she is at a retreat center with a group of other teenagers for…
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