Fran & Diane: Making A Difference with Clay
Gary Barg: What particular challenges do caregivers of children with developmental disabilities face?
Diane Bubel: I really think that when you have a special needs child, you need to monitor very closely what is going on throughout the school day, because autism is a difficult disability; there are certain people who understand it and other people who don’t. I found myself over the years having to really closely monitor Mike’s school situation to make sure he was with the right people, and that they were managing him the right way, and that they actually understand the disability as opposed to being trained to handle any child. I’m grateful that I was able to do this. I think that one of the difficult challenges is having to explain why Mike behaves as he does, and being open to accepting him the way he is, and helping others to understand him the way he is. It’s a different kind of disability.
GB: How did Clay come to work with Mike?
DB: I learned there was a program offered by North Carolina to help families who have children with developmental disabilities and mental retardation. The program provides people to work with your child on the off-hours from school and take them out into the community. This program was fantastic because people would come to my house and take Mike out into the community because at school, he was always in a self-contained classroom, and inclusion is always a little difficult when you’re “that” kid in “that” separate class. This was a fantastic program, and I believe Clay was the fourth worker that I had. I’ve been really lucky and I’ve had some really great workers. They take Mike out into the community doing simple tasks like teaching him how to manage his way through a grocery store and how to follow the rules, or take him to the park for some leisure activities or to public pools so that he can learn to be around other children. The girl who had worked with Mike for three years had to move, and we had to interview other candidates and then Clay came.
Clay had all this background specific to autism and he just has a manner and a way about him that during the first interview I definitely knew that this was the person I wanted to work with Mike, so we hired him right away. He’d come two days a week and take Mike out into the community. Usually, since Mike is nonverbal, I try and work with the person for about a month so that there’s a certain comfort level there, to help Mike get used to the new person, to help the new person start to understand the way Mike says and does things. Generally, it takes a while for the new person to get to understand Mike, but Clay picked up really quickly and when Clay left to do American Idol, he found a replacement for us.
GB: How did you and Clay decide to create the Bubel-Aiken Foundation?
DB: After American Idol ended, Clay was only one semester short of finishing his degree. I went to the dean and he said that they were thinking of having him do some kind of research to count as credit toward it, and the research he did was to come up with a foundation that would serve the special needs population, something that’s not already out there, or some unique niche that needs to be filled. He did all the research and shortly after he finished up with that, he called me up and he said that he had finished this independent study and that he was actually thinking about really creating this foundation and would this be something I’d be interested in? We talked about it and it certainly was something that I wanted to do. I’d always worked hard so that people would accept Mike for who he is. Inclusion has always been important to me as a parent and we want to create a world that is more open to children and people with disabilities. This was also important to Clay because he loved being able to come and take the kids out into the community and do things with them. We would talk a lot about just how the world is and how it’s time for things to change. Why do we have to think of people as being so different? So he brought up this foundation idea, and I thought, I’m for it if this is something you want to do. I didn’t quite know how we were going to get it off the ground, but I was perfectly willing to do my part, whatever my part was. Fran Skinner-Louis ended up meeting with his mother, and that’s when I got another call from Clay saying he’d met someone who was really excited about running this foundation, and he said he’d have her give me a call. Fran called me and it just kind of snow-balled.
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