Like 40% of individuals with Down syndrome, my son Troy has Childhood Apraxia.
It’s a motor speech disorder in which the brain has trouble planning to move the body parts (tongue, lips, jaw) needed for speech (see the video at the end). Some days I feel like Troy will never be understood by anyone outside of our immediate family.
But then I was lucky enough to meet Sean, from the Emmy Award winning reality television show, Born this Way.
We both decided to advocate on Capitol Hill this past April at the Buddy Walk on Washington, and I got to have dinner with him and his mom. This mom-son duo is a formidable force!
I was a bit star-struck! I mean, here’s a guy that’s co-starring in an award winning reality show entering its third season, and he has Down syndrome!
But I was even more inspired when Sandra, Sean’s mom, told me that Sean has Apraxia too, and she says “It was not so long ago I had to translate everything Sean said.”
How then, is it possible that Sean is on television, making celebrity appearances, and booking regular speaking engagements?
It’s because Sean dreams only one way:
“I want to buy a house at the beach with a pool, a bowling alley, a movie theater and a man-cave in the basement.”
“I want to go on a date with Megan Trainor.”
This is how he opens his speeches these days. With what he calls his “crazy dreams.” Then he has the crowd repeat after him “It could happen!” In which he replies, “That’s what faith can do.”
These phrases are so well-known by fans of Sean’s that they’ve inspired Seanese —Sean’s newest business venture. Sandra hopes it won’t be lost on readers that “less than 5 years ago he was unintelligible, and today we celebrate his speech by immortalizing it on swag.”
But here’s what those with Apraxia and their loved ones need to know:
Sean’s hard-won success is a marathon, not a sprint.
Sandra never dreamt that Sean would be on television, but he did. He was involved in drama throughout school, and auditioned for a sitcom while in community college. Sean was confident that he would get the role, but his mom was honest with him: “I couldn’t understand your words, and if I couldn’t understand them, I know they couldn’t.”
But it seems this small failure served as further motivation for Sean. He took his mom’s advice and worked tirelessly on his intelligibility at every chance. Now look at him!
Born This Way opened doors for Sean once thought impossible. And has also helped Sean perceive himself in a new way.
In the first season, Sean was the self-proclaimed “Ladies Man.” But after watching himself on the show, he realized the saying’s true intent.
Sandra says Sean has “grown so much by watching himself on TV and learning from his mistakes in an authentic way.”
Sean’s also living in his own apartment, subsidized by HUD. He has a roommate who is a live-in-aide.
He had a job at Home Depot, but it didn’t give him the social outlet he was looking for. He loves kids, and is now starting a job at a trampoline park working with children.
Some within the Down syndrome community criticized Born This Way for only showing what they say are “high functioning” individuals with Down syndrome. But Sandra argues that Sean is not the smartest, or most intelligible. In fact, she says the show uses some pretty “creative captioning” so the cast can be understood.
What she says is unfair are the differences in adult transitional services throughout our nation.
It’s obvious the cast members benefit greatly from California’s system, which has no waitlist for job coaches and supported living services.
Sandra also makes an important point that “if we criticize television shows like Born This Way and stop watching it, we’ll lose the opportunity to open doors for all individuals with Down syndrome.”
Both Sean and Sandra have sage advice for parents like me and kids like Troy, who seem to not yet see the forest for the trees:
Sandra says it’s important parents find a speech pathologist and occupational therapist who are knowledgable in the therapy techniques for Apraxia, and practice with your child every day.
But more important “find out what your young adult LIKES, and help them learn about the types of jobs they can do to fulfill their dreams.”
I want Troy to have the best services and therapies to address Apraxia, but what Sandra and Sean taught me is even more important. If we want our children to be success in school and work, we have to focus on what’s really important: “Have good behavior and listen and be nice to everyone,” Sean says.
The rest will follow with hard work and the right motivation!
Season 3 of Born This Way aired May 16, 2017. You can catch up on Seasons 1 & 2, and watch current episodes here. Sean won’t reveal any real spoilers, but says parents of young children with Down syndrome will definitely want to tune in for a surprise this season.
You can help support Sean in his next business venture at https://seanese.com.
If you’re still trying to understand Apraxia, watch the video below: