Lessons Learned in Raising a Son with Special Needs

Steve Adubato goes One-on-One with Eliza Factor, Founder of Extreme Kids & Crew and author of "Strange Beauty: A Portrait of My Son." Eliza describes raising her son with special needs, including autism, and what that experience has taught her about people’s fear of disabilities. She also shares her inspiration for creating a place where kids with special needs and their families can relax and play together.

7/8/19 #2229

Excerpt:

"We are thrilled to be joined for the first time by Eliza Factor, the founder of an organization called Extreme Kids & Crew, novelist and author of Strange Beauty: A Portrait of My Son. How are you? I'm very good. I'm happy to be here. Glad to have you. Tell us about your son Felix. My son Felix right now is at a wonderful school in New Hampshire. He's been living there for five years. So he... since he's kind of moved to New Hampshire, I've been able to really dedicate myself to helping families with kids with disabilities, and building this organization. and seeing Felix, you know, in a more kind of conventional parental way, rather than, like, a 24-hour emergency, high alert handler. What's he challenged by? He's got a bunch of different disabilities. So... and because of that, my work is really pan-disability, but I guess cerebral palsy and autism would be the two big, like, big ones we use, because there's a lot of understanding about them, and they're good for getting services. The organization you created, what year again? 2010. Why? Because I have three kids. Felix was the first. And Felix was... as everybody who has a bunch of kids, there's some wonderful, amazing, incredibly difficult, getting-used-to-being-a-parent stuff that happens with your first child. But you know, it's not like the others are a breeze, but it's a major transition. And then Felix was, you know, a somewhat more complicated case, because there was a lot of time in the hospitals and therapists and just trying to figure out why he wasn't sitting up, why he was, like... like a rag doll. Floppy. Right. Well you know, what was going on, and so, for the first three years of his life, I didn't really have a community of friends. I had a community of therapists and doctors and, you know, so like a wonderful babysitter, because I couldn't... I needed help with him. You feel isolated? So I felt very isolated. And then when I... I mean I didn't realize I felt isolated, because I have a wonderful husband, and it was really difficult, but also incredibly rewarding being with Felix, and he was very happy in many ways, and very interesting to me, and very expressive. So like, even though he didn't use language and wasn't learning like other kids, just being with him, and trying to get into his world, was deeply rewarding. Right. And so I didn't understand that I was isolated until..."