What Do I Think About the Barbie With Down Syndrome?
What do I think about the new Barbie with Down syndrome? I was a little skeptical at first. She isn’t wearing glasses, which most people with Down syndrome wear. Her…
What an Assessment of My Daughter’s Life Tells Me About Us
Every few years, Penny goes through a series of tests to determine the extent of her disability and, therefore, what services she is eligible to receive. I am tasked with…
Some People Are Awesome
We’ve encountered our fair share of subtle discrimination over the years. The people who talk to me as if Penny isn’t present. The professionals who have predicted her future in…
3 Things I’m (Still) Learning About Down Syndrome
Penny was on spring break last week. Our original hopes for a quick trip to Jamaica never materialized, but we did get to spend two nights with Penny’s friend Rachel…
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…
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