Holly Robinson Peete Talks About Parkinsons and Autism

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In an interview with Black Voices, an effervescent Holly Robinson Peete reflects on her life, family, marriage, activism and philanthropic projects. She also dishes about what makes the star-studded Hollyrod fundraiser the hottest ticket in town each summer.

The foundation's 11th annual DesignCare Event honored actor Michael J. Fox (pictured) with the Matthew T. Robinson Courage Award last month at a posh Beverly Hills home. The award is given to people who have defied the odds. Past recipients include Muhammad Ali and Maurice White of Earth Wind & Fire. Fox was joined by autism awareness advocate Kelly Austing at the event, where En Vogue, the 1990s R&B group, performed and designer Marchesa featured a fashion show of her fall line. The event raised about $500,000.

"I invite 500 of my closest friends,'' said Peete with a modest chuckle.

Peete, the svelte and sexy mother of four also gives BV the exclusive on her plans for the future, including acting, her new children's book written with her daughter, her husband's new book, the struggles of love and marriage and a lot more. Read on!

BV: Tell us about the founding of the Hollyrod Foundation. You are obviously quite passionate about it.

Holly Robinson Peete: Almost 11 years ago, my husband, Rodney, and I founded it because my father [Matthew T. Robinson, the original Gordon from 'Sesame Street' and former sitcom writer for the 'Cosby Show'] had Parkinson's disease, which is a really difficult disease to live with. We knew what he struggled with.

He was fortunate to have the both of us who could quasi-afford to take care of him, but for those families that don't have those resources, it's really tough. That's why we started Hollyrod. We have a Compassionate Care Center for patients at University of Southern Cal, which is Rodney's alma mater. Parkinson's patients that are underprivileged and don't have insurance, they can receive physical and speech therapies that they normally wouldn't be able to get. We're really, really thrilled about our home for patients with Parkinson's disease.

BV: Your oldest son, Rodney II, also known as RJ, has autism. Tell us about that:

HRP: About five years into the Hollyrod Foundation, Rodney II, was diagnosed with autism. So, we decided to start Hollyrod for kids. And the same way that Parkinson's is difficult to afford for families, autism is really difficult as well. So, we decided to raise money for families affected by autism to help them get services that are too expensive.

BV: You hear horror stories about getting children diagnosed. Was it difficult for you?

HRP: He was 2 when we started noticing there were some issues, and it took a whole year for us to get a diagnosis, which I'm still real bitter about. That's valuable intervention time that we lost. He was 3 when we actually got the official diagnosis.

BV: How do people get access to your foundation and its services?

HRP: We serve the Los Angeles area through our Compassionate Care Center at the University of Southern California. We have hotlines set up and a lot of resources that people can access on the Internet. Our goal is to become more national and to form partnerships with other hospitals. I really feel like there is going to be a cure for Parkinson's, especially since President Barack Obama has lifted the stem cell ban. Until then, there are just a lot of people who need help now. We handle in the neighborhood of about 200 people. Maintaining a positive attitude is important, and we try to help with that through speaking engagements.

BV: How does your son maintain a positive attitude?

HRP: We were at Disneyland recently, and a family with two sons on the autistic spectrum walked up to us. All the mother wanted to do was meet RJ. She said that RJ and his story in People magazine and Essence magazine really gave their family some hope. When they left, RJ said to me, "That was about me? Did I help them? I helped them, didn't I?" He really gets it now.

He's 11 now and he's come a long way. For a long time, he was nonverbal. He couldn't make any friends. We had to fight, advocate, roll up our sleeves and get him access to every resource possible. We were blessed to be able to do that. But just like Parkinson's, if you don't have the resources to take care of your loved one or child with autism, you miss out on a lot of opportunities to help them get better and live a great quality of life. That's why it's interesting that these two disorders would strike our family. They are similar in so many ways. We see so many people struggling just to get by day to day. That's why it's been our mission to peddle a little corny thing called hope.

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Holly Robinson Peete on Motherhood & Autism
Holly Robinson Peete candidly reveals her take on the link between autism and vaccinations, how to keep sane as a working mother, and her public fallout with actress Amanda Peet.
Gallery by Angela Bronner Helm, Photo Editor: Lauren Williams
Getty Images

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BV: How does the community respond to RJ? Do they try to label him?

HRP: RJ doesn't like being called autistic. He hates it. We just say he has autism. It implies that it's maybe something you can get rid of, or something you may not have one day. When you call a kid an autistic child, it's like saying that kid is Chinese or that kid is black. He's not an autistic black child. He's a black child with autism. It's important to listen to kids and how they respond to being labeled.

For lack of a better term, he can spit out those 'Rain Man' facts like Dustin Hoffman in the movie. He can tell you who was dropped last year for every NBA team and even hockey. If you shout out a number from 1 to 44 and ask him which president it was, he'll tell you. He's one of those guys. He has those amazing qualities, but he has a terrible time making friends.

BV: How far has the black community come in terms of dealing with autism?

HRP: The black community needs stop being in denial and get these kids diagnosed quicker. Our problem is that we get hung up on the idea of therapy and anything that has to do with a mental situation. What happens is a lot of our families go into denial about something being wrong with the child. Even in our family, you'll have people say, "Oh, that's just like cousin JJ. JJ didn't talk." Well, cousin JJ needed services. He was on the autistic spectrum. So, that's like little Rodney. We're not facing up to it in the black community, and were getting our children diagnosed two to five years later than other races. That's not acceptable. That's a wide window of time where we can be taking them through intervention. Then there is the matter of being able to afford that help. That's where Hollyrod tries to help.

BV: Does President Obama's health care plan address any of this?

HRP: He's really on board with engaging the autism community. The insurance legislation he's trying to get through includes autism therapy. In the last 10 years, autism has become a pandemic, so the president recognizes that this is something that has to be moved on and moved on quickly. I'm really hoping the first lady embraces autism as a project as well. I know she's very focused on military families. Well, you'll be surprised how many military families have children on the spectrum. There is still a lot of work to do, but at least this president is having the dialogue.

BV: You and Rodney seem to have a great marriage. You all work together on so many projects and raise the kids together. What is your secret?

HRP: Just like all couples, we've had to fight for our marriage. The autism diagnosis wore us down. There is an 80 percent divorce rate when a child is diagnosed with autism. There is a lot of pain and denial. But I told Rodney we had work to do. I couldn't wait for him to come around. He's actually writing a book, 'Not My Boy: A Father's Journey With Autism.' It's the story of being the father of a child with autism. It's going to be great because there is no other book from a dad's point of view about autism and what it does to the family and the male ego. I'm also writing a book with my daughter, a children's book. Both are due out in April 2010.

BV: Tell us about the DesignCare Event.

HRP: I think it's one of the best out here. It's not one of those been-to-a-million-times-hotel-ballroom-rubber-chicken-dinner-fundraisers. We always have it at a private home in cities, from Encino to Malibu. It's a fun game of people trying to guess where we're going to be next year. They wanna know whose house we got. It's a private event, which always gives that sense of intimacy and that sense of family fun and philanthropy. This year, we held it in Beverly Hills and it was lovely.

The guests are a mixture of philanthropists, friends, volunteers, and people with autism and Parkinson's. Celebrities who attended this year included Magic Johnson, Gabrielle Union, Sanaa Lathan, Ciara, Garcelle Beauvais, Nicole Murphy, Michael Strahan, Leeza Gibbons, Harvey Weinstein, Natalie Cole and Sugar Ray Leonard, the people who have been in our corner from day one. Derek Fisher of the Lakers donated a package where you get to be a ball boy and courtside seats.

I was so excited to have Michael J. Fox this year. I've been trying to get him for 11 years. He usually vacations with his family, but this was the first year I was able to get him.

BV: How did you get En Vogue to perform?

HRP: Terry Ellis, as many people know, is my best best girlfriend. And they are so fierce. I saw them at the Essence Fest. They killed it at the Superdome. We joke that I'm the wanna-be fifth member of En Vogue. I've been trying to get in that band for 20 years! They're celebrating their 20 anniversary, and I'm thrilled they were able to join us.

We had Maxwell last year. My girlfriends wrote me and thanked me for a whole year. In the past, we've had Babyface, Stevie Wonder and Jill Scott, The Time. We've really had some fun and amazing artists. Every year everyone expects so much. It keeps me motivated and inspired to make it better and bigger each year.

BV: You are doing so much, but the big question is when will we see you on TV again?

HRP: Rodney and I are pitching a talk show pilot, which is sort of like 'Regis and Kelly' meets 'Run's House.' We've had some really good feedback. We're looking forward to it.

BV: You have such positive energy. How do you maintain that?

HRP: You learn that over the years from negativity. When it really brings you down and you see what it does to you and the people around you, you learn that the positive attitude is really what it's about. That's what Michael J. Fox and Muhammad Ali have taught us. If you put out that positive feeling, it is so inspiring and so helpful to others. There is always somebody who has it worse than you!

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