Developmental disabilities are certainly not geographically specific. They pervade people’s lives throughout the country and the world. The national Arc organization, for example, has 140,000 members and 850 state and local chapters across the nation.
Although we focus on covering families, issues, and events local to Pennsylvania, I also like to explore what’s going on at other Arc chapters in the U.S. I think it provides some perspective on how things are going here in PA.
So I recently came across an op-ed in The Dallas Morning News penned by Clay Boatright. He’s the president of The Arc of Dallas, and member of the board of directors for The Arc of Texas. Clay wrote about a Law and Order episode, called “Challenged.” The show depicted an intellectually disabled man who had been institutionalized at the infamous Willowbrook State School when he was three.
In Clay’s op-ed, he writes how the episode resonated with him because he saw himself and his family in the show. He and his wife Carole are the parents of three girls, Blaire, Paige, and Mia. Paige and Mia are autistic twins. They were diagnosed at age two and a half.
The twins are now eight. And I was curious to learn more about Clay’s story of having autistic twins — the challenges he and Carole have faced, and solutions they’ve discovered to raise Paige and Mia in the best way possible.
I talked to Clay yesterday, and our podcast is below. He takes me back to the beginning, when he and Carole first noticed developmental delays in Paige and Mia. At first, Clay and Carole thought they would outgrow it. But now they know that was a naive way of thinking about it.
Paige and Mia began undergoing occupational, speech, and physical therapy. They were responsive. A few years later, the girls started kindergarten. On that first day, while watching Paige and Mia board the bus, Clay says he realized two things.
One, the public school system would be able to work with his family to accommodate Paige and Mia’s disabilities and provide them a good education. But his second thought was chilling. This wouldn’t last forever. What support will there be when Paige and Mia transition out of high school?
That’s when Clay got involved with The Arc. He became a board member, and then president of The Arc of Dallas. He wanted to learn what he could do to help his daughters more.
Paige and Mia are now in the third grade, and doing well in their IEP programs. Clay and Carole have been very pleased with the school’s involvement and collaboration. He explains that Paige and Mia have largely similar disabilities and IEPs, which has made it easier to support their needs.
And a state institution, he says, is not part of the picture. As Clay and I talked about the Law and Order episode, he reflected on this decision that so many families with disabled children grappled with: Do I institutionalize my child?
Unfortunately, some families have no choice. But the waiting list in Texas is just as long as it is in Pennsylvania. Clay says The Arc, school, and his church have provided the support and guidance his family needs.
In fact, with Thanksgiving around the corner, this is something Clay and Carole are most grateful for. He tells me, “God has blessed us in many, many ways … The people we’ve met through our church, school, and community. These are folks who are wonderful, caring, and truly reflective of what God wants us each to do in each other’s lives, and that’s to be a part of each other’s lives.”
Listen to the rest of my interview with Clay right here.