Recently I wrote a blog post lamenting my mortality as it relates to my son with Down syndrome. Parents are often a child with a disability’s first and most important advocate. While the post started off with me whining that no one can replace me, it ended on a more realistic, less narcissistic note. I will probably die before my son, and he will be just fine without me. How, you ask?
Read Related Post: The Immortal Mom: Why I Can Never Die
He will do just fine, because he will have a “Circle of Support” that will allow him to lead a successful life of interdependence. You read that right: not independence, “interdependence.”
This idea is not mine. Many parents of children with disabilities facilitate this idea of interdependence every day, and one in particular has coined the phrase “Circle of Support.”
National recognized speaker, author and advocate, Janice Fialka, shared her son’s journey to interdependence with me via phone the other day. You may recognize her 30-year-old son, Micah, from the upcoming documentary “Intelligent Lives.”
Micah lives exactly 471 miles from home (I had to smile over the phone, because of course his mom knew the exact mileage), and has worked for the University of Syracuse as a teacher’s assistant for the past 5 1/2 years. He also has an IQ well below what most people would consider functional for a life of independence and “success.” Micah’s mom, Janice, says Micah’s success is 30 years in the making and includes help from dozens of friends.
“My advice to families is to seek out support. At first I felt awkward, uncomfortable, angry or too shy to ask for help. I soon realized Micah needs more than just me,” says Janice.
Fialka says families need to drop their love affair with independence. We all need a circle of support to be successful. “It’s important to learn the value of interdependence. Learn to ask for help and let people in. We had to be intentional about this with Micah,” explains Janice. Micah’s family became intentional about interdependence in elementary school by creating a “circle of friends.” First they invited friends in his class to hang out with Micah at lunch time, recess, and at home.
“Micah is poised now, but he could be very annoying when he was younger. He just didn’t know how to interact with people. I can remember crying because we invited friends over and Micah would be standing in the corner not playing with his guests,” Janice describes. The “Circle of Friends” got more complicated in middle school, but Janice was able to build relationships with eight families who continued to interact with Micah. By the end of high school, Micah had a group of friends rally, petition, and eventually help Micah sue a local university to allow him to live on campus and attend college courses there.
Read Related Post: Social Media Give Self-Advocates Voice
“When you ask Micah now, he will tell you he’s always had lots of friends. But he spent countless weekends at home alone. He’d call five friends and no one could meet up,” remembers Janice. Still, the family continue with the intentional interaction, and it really paid off. “When Micah was offered a job seven hours from home, he was the one that came to us an said ‘I’m going to need to create a circle in Syracuse if I’m going to live on my own.’ We knew then what an impact the idea had on Micah’s life,” Janice says.
Janice wants parents to know it’s “not about letting go, but holding on differently.”
What an impactful message from a mom who’s been there and gets it. You can order Janice and Micah’s new book, “What Matters: Reflections on Disability, Community, and Love,” here. Listen to an interview Janice gave to NPR here.
Tell me what you think about the idea of a “Circle of Support” for your loved one with Down syndrome below. How have you already begun this journey? What challenges and successes have you found in helping your loved one seek a successful life of interdependence?