Baking at Her Own Pace
Penny wants to work on cooking and baking skills this year. Usually, we are rushing around, so it is hard to let her work at her own pace. But over…
Step by Step by Step | Increasing Independence
Step by step by step. For our daughter Penny, who has Down syndrome, the path toward adulthood and increasing independence involves many more deliberate and supported steps than it will…
Is Independence the Goal?
Every so often I get asked, “Do you think Penny will live independently?” I’ve started answering that question about my daughter who has Down syndrome by saying, “I never want…
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…
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…
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…
Why Our Down Syndrome Clinic Appointment Is Worth It
Once a year, Penny and I travel to see a specialist and his team at the Down syndrome clinic at Massachusetts General Hospital. Every year, I wonder whether it will…
New Glasses: It Matters What I Think
Penny is getting new glasses, after 15 years of more or less the same ones. We’ve changed the prescription but not the frames, per her request. But she has recently…
Baby Steps Towards Growing Up
Marilee definitely regrets the fact that she got excited when I told her I was filling out forms for summer camp because some unexpected words came out of her mouth:…
