Autism activist: Actress Holly Robinson Peete relishes role as an autism poster parent
Actress Holly Robinson Peete wants what any mother wants for her kids — a future in which they're safe and genuinely loved long after she is gone.
Most parents can assume their children will find that, one way or another. For Peete and her 14-year-old son, R.J., who has autism, that's no guarantee.
"As a mom, you worry about protecting your kid," Peete says. "But there are extra added layers of fears when you're talking about a kid with autism or who has some special needs issue. You worry about him being bullied, about being treated unfairly. You worry about him doing the wrong thing in public and it being misconstrued."
Peete, best known for her primetime roles on "21 Jump Street" and "Hangin' with Mr. Cooper," as well as for her hosting duties last year on CBS's daytime chat-fest "The Talk," might not love the extra worrying it brings, but she relishes her role as autism poster parent.
She wants the issues this growing segment of the population faces — the most recent estimate from the Centers for Disease Control and Prevention says that 1 in 88 children lands on the autism spectrum — to be part of the national conversation.
"We need more support," says Peete, who with her husband, former Detroit Lions quarterback Rodney Peete, in 1997 started the HollyRod Foundation, which helps bring awareness to autism issues, supports families and raises funds.
Q: Do you do autism workshops often?
A: I do. I do them for various reasons, but the biggest is that I feel very empowered after having spent time with families that are experiencing things we've experienced. It really helps reinvigorate my passion for what I do. It keeps me in touch with what people are saying in the autism community.
Q: Is it less confusing now, 12 years after your son's diagnosis, or more obvious where to turn?
A: Oh, it's still very confusing. Fortunately, we have some pretty great organizations that can guide you. Autism Speaks is one of them. They have 100-day kits for the first 100 days after a diagnosis for what you can do. And they have a lot of community resources and a database on their web site. You have organizations like ours, HollyRod, which gives compassionate care to families. We're working really hard to erect a compassionate care center where families can go. Hopefully that will be the model that can spread across the country. The one I look at as the Holy Grail is St. Jude, where families can go and deal with their children's cancer without having to worry about paying for it. Where is the St. Jude for autism? That's in my sights, doing something like that.
Q: There are many therapies and theories for how to treat autism. What have you tried?
A: We've tried everything. I'm hesitant to say to people what works for me because it may not work for their child. My goal is to create an environment where families can try, let's say, hyperbaric oxygen therapy, which was helpful for my kid. But at $100 a half hour or $100 an hour, no one can afford that. Our goal with HollyRod is to set up centers where people can go and try hyperbaric oxygen therapy without sacrificing the rent or tuition.
Q: What is life with R.J. like now ?
A: It's challenging because the teen hormones can really cause erratic and a little bit of regressive behavior. You feel like you've moved past a lot of things like stimming (self-stimulatory behavior like flapping, rocking or spinning) or some of the things that he's been doing as a child that you feel like you've grown out of, you're seeing that again. Also, just dealing with girls and social circles and all these things that are already a nightmare for any typical teenager or typical teenager's parents. But when you fold in autism, you have social issues that are really difficult to navigate. I try to have those conversations publicly as often as possible because, you know, we don't talk about it enough.
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