Down Syndrome’s “Exclusive Club”
I remember a day 17 years ago when Peter and I had spent hours with Penny at the Children’s Hospital of Philadelphia. We were exhausted. But he needed to attend…
The Dignity of Risk
She might cut herself. She might burn herself. She might feel lonely, sad, scared, abandoned. I have read all about the dangers of helicopter parenting, and about the importance of…
Deficit-Based Language
The only way to receive special education services for kids is by focusing on their deficits. I received a DM from one of you the other day about this reality:…
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What Will Perfect Humanity Look Like?
I used to think I knew what perfect humanity looked like. I thought it had to do with virtues like kindness and honesty. I also thought it had to do…
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…
Siblings on World Down Syndrome Day
Last weekend I mentioned to our kids that March 21 was World Down Syndrome Day. I reminded them that a few years ago, Marilee thought we should celebrate this day…
S6 E15 | World Down Syndrome Day and Unexpected Gifts with Jillian Benfield
On World Down Syndrome Day, Jillian Benfield, author of The Gift of the Unexpected, talks with me about whether it is hard to be the parent of a child with…
World Down Syndrome Day 2023
I love World Down Syndrome Day. It’s a day to simply pause and celebrate the goodness of a world with people with Down syndrome in it. It’s a day to…
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Novels (for Adults) with Characters with Intellectual Disabilities
What novels have you read, recently or in a long-ago English class, that involve characters with Down syndrome or other intellectual disabilities? I’ve been thinking for a long time about…
Nonverbal Individuals in the Church
When Penny was first born, an older Christian woman with a child with Down syndrome came to visit. She told me how her church hadn’t wanted to baptize her daughter…
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