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After our daughter Penny was born and diagnosed with Down syndrome, I felt as though I could no longer imagine our future as a family. The messages I had heard…
The Good Life Belongs to the Ones who are Unimportant and Overlooked
A few years ago, I was seated next to a businessman from New York City at a fundraising dinner. I asked him about his summer plans, and he told me…
Penny in Her Own Words: Camp PALS 2024
Penny, can you explain Camp PALS to people who don’t know anything about it? Who is it for? Yes. Camp PALS is for young adults with Down Syndrome where they…
Creating Belonging Within Families
I wrote a few weeks ago about the difference between exclusion, tolerance, inclusion, and belonging. Generally, when I think about belonging, I’m thinking about institutional spaces. I’m wondering whether our daughter Penny, who…
Reimagining the Dream of a Family Bike Ride
(Scroll down for a great video!) Does it matter whether your child ever learns to ride a bike? Does it matter if your child never joins a family bike ride?…
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Sometimes Holidays Are Hard for Kids With Disabilities
Public Service Announcement for friends and family members: sometimes holidays are really hard for kids with disabilities. There’s the problem of sensory overload, with crowded spaces and special foods and…
Penny in Her Own Words: Dance and Dedication
What values are important to you? Penny recently thought about that question, and I love her answer—and that it’s connected to dance! (Scroll down to hear Penny read her answer.)…
Fear of the Future and Finding Goodness
I expected to need tissues on the day Penny finished high school. I expected a sense of deep loss, and perhaps even dread about what lies ahead. For many kids with…
Penny in Her Own Words: Graduation and the Future
Penny is a high school graduate! Here are her reflections on graduation day and the future: I can’t really believe you have finished your final year of high school! How…
Humanity, Belonging, and “An Ordinary Future”
Penny’s school reached out months ago to make sure they could special order both a robe and a cap that would fit her well—an example of belonging. How do we…
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