Raising a teen with Down syndrome
By Sean Adelman
Devon, my second daughter, looked so perfect, how could anything be wrong with her? As a doctor training to be a surgeon, I knew about Down syndrome and had taken care of patients with Down syndrome. I knew more then I wanted to know but I didn’t really want to share my knowledge with my wife. All of the bad things that might happen, she will be weak and mentally delayed; she might have heart defects and thyroid problems. Ironically, what I didn’t know was how little I really knew. The wonderful moments that she would bring into our life would make all of those scary possibilities seem like background static on your favorite radio station.
The interesting thing about raising a teen with Down syndrome is that it’s just like raising a daughter without Down syndrome. She ate, pooped, walked, and grew up just like our oldest, Brenna. And I worried about the right preschool, the right neighborhood, and all of the other things a parent can’t control.
When kids are young, they have play dates. All of the kids play together and nobody seems to care that one child has Down syndrome. With Devon, we enrolled her in team sports, dance classes and gymnastics with our older daughter. It never occurred to us to act differently.
Then, our cute daughter became a teenager and things changed. We began to notice that our wonderful daughter didn’t have very many friends. Some kids were mean on purpose and some were mean unintentionally. The kids who were nice to her when she was little would still say “Hi,” but they no longer invited her for sleepovers, or the movies, or concerts.
Being nice to someone is not the same as being a true friend. And Devon deserves a true friend. She might look different and she might talk differently, but she likes the same music, sings along to the same songs, and likes the same boys. I wish that they would take the time to get know her.
They would discover that she, too, is a teenager: she does her own homework, she rides the city bus by herself, she wants to be alone in her room, and she gets emotional for no apparent reason.
As much as I want her to stay my little girl, she is growing up into a whole new person and part of that should include friends and independence. We try to help by hosting movie nights, coaching team sports and chaperoning school events. But despite our efforts to show the other kids that she is just like them, Devon is often thought of as the “special” kid. And it breaks my heart.
What is really unique about raising a teen with Down syndrome? As it turns out, not so much. We chauffeur Brenna to swim practice and Devon to cheer leading practice and piano lessons; we make sure they both do their homework instead of listening to music. And like all other parents of teenagers, we must put up with their hormonal swings. It’s not so different after all.
The future is bright, amazing, scary, uncertain, choose your metaphor then remember those same metaphors apply to everyone’s children.
Sean Adelman, M.D., is an orthopedic surgeon; author of Sam’s Top Secret Journal and We Spy; and founder of Raise Expectations, LLC.