Spotlight on Autism

Aren't many parents thrilled to see the subject of autism raised on the national stage?
Some parents are just excited to see their child's disability mentioned. And I agree with that. It's very important to me to hear autism being discussed on a national level, to know people are thinking about it. But I'm always concerned about the way autism is talked about, because when politicians and celebrities talk about autism, it affects what people think. The statements that have been made about special-needs children put a huge emphasis on children. There's been very little said about adults with disabilities. As a parent, that concerns me most of all.

Isn't Sarah Palin a good role model for special-needs families across the country?
I appreciate the fact that the choice of Palin brought working mothers, and especially working mothers of special-needs children, into the national discussion. And as a mother, I hesitate to criticize or judge another mother on her parenting style. But I'm concerned about the reality [she would face in] taking care of a special-needs child.

How is your son doing?
It's not as easy when a child gets older. My son is growing up. My son is an adolescent. He has tremendous language disability, so he can't tell us about the changes going on inside of him. It's very frustrating for him and for us. He can have a loose tooth and it can be driving him crazy and he can have an outburst because of that. It'll look like he's getting mad out of the blue, but it's because he has a loose tooth and it hurts.

My son doesn't have other friends or kids he plays with his age so we spend a lot of time with him. He definitely needs constant care. He can't get off the bus and let himself in the house. He's only 11 years old, but he's a strong athletic boy and taller than me. When we're out in public, people look at him differently immediately. It's very painful to see people shrink away from your child, look scared or horrified or laugh.

What do you want people to know about your life as Charlie's mother?
I never thought I would be the mother of a very disabled child who would need constant attention and who would not go to college, who would need special education, who would not be able to sit down and read a book with me, who would just be very different. I also didn't think I'd be the mother of a child who'd jump into the ocean at high tide and swim or the mother of a child who would be able to ride a bike for longer than me and enjoy it. Everything about raising my son has been unexpected, but it's all been completely worth it. Life is very challenging, life is very busy, very full, and sometimes very frustrating. My son is a great, great kid. My husband and I wouldn't want him to be any different than he is.

© 2008