Holly Robinson Peete on the “Greatest Gift” of Raising a Child With Autism

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Holly Robinson Peete wears many hats: actress, talk-show host, author, producer. She’s also a longtime activist and philanthropist who uses her experiences as a mother and a daughter to help others. In 1999, Robinson Peete and her husband, former NFL quarterback Rodney Peete, started the HollyRod Foundation inspired by her father’s battle with Parkinson’s disease; when her son, RJ, was diagnosed with autism a year later, they expanded the foundation’s mission to include support for those affected by autism, too.

On July 15, the HollyRod Foundation will celebrate their 25th anniversary with the DesignCare Event, which will honor Nicole Ari Parker and Boris Kodjoe in Los Angeles. Ahead of the event, Robinson Peete told us what raising a child with autism has been like, including both the joys and the challenges. Read her reflections, in her own words, below.

Imagine this: the year was 1999, 2000. I was a rookie mom with boy-girl twins. I was working on a series called “For Your Love,” and my husband was playing for the Eagles at the time, so he was all the way across the country. That football schedule is no joke, so a lot of the parenting fell on me.

Then, I started noticing that RJ, my son, was not playing alongside his sister right. I’m like, “Well maybe he just doesn’t want to be with her.” But he was not doing parallel play; he was playing alone. He was looking at things, and turning lights on and off, and lining up his Thomas the Tank Engine trains and staring at the wheels. There were lots of signs, but I was just a rookie mom, so I didn’t know. So I went to the pediatrician, and I said, “He’s acting different.” And the first thing they said was, “He’s a boy, don’t compare him to his sister. Boys develop slower and in different ways.”

“Don’t be scared to tell someone your son or daughter has autism.”

But my mommy gut was churning, screaming at me from inside. And when he started going to preschool, that’s when I really noticed it, because that’s when he was around other kids besides his sister. The boys are all running around together, and the girls are grouped up, and there’s RJ in his corner in the playground, talking to himself.

So finally we got the diagnosis. That’s what I noticed: how hard it was to get the diagnosis, how expensive it was, how long it took. I was like damn, I’m glad I have resources to handle all of this, because if I didn’t, I wouldn’t know how to pay for any of this.

When RJ got the diagnosis, we were told at the time that he would never do a laundry list of things. We infamously call it “The Never Day,” because the developmental pediatrician rattled off 10, 15 things he’d probably never do in his life and told us we should change our expectations. One of them was not having friends, another was not having any meaningful employment and being able to live on his own. The list went on and on. I was like, he’s only 3, why are we putting this on him?

After that, it became about finding interventions, putting him in different therapies. And again, a lot of this stuff wasn’t covered by insurance, and we had to pay out of pocket. The waiting lists were sometimes two years long. As I was taking care of RJ, I just kept noticing every step of the way how impossible this would be if I couldn’t afford to do it. I would see single moms, I would see a lot of other parents and families in these situations who were struggling so hard.

When I first got the diagnosis, I would hang out with my best friend, and her kids are the same age, and it’s just like, their problems were, “Oh, Billy got a C on a test,” and I’d be like, “I’m just trying to get RJ to look me in the eye.” I think the lesson from that was that autism parents need compassion, and we need a lot of it. We need understanding about what we experience. And not everyone wants to deal with that. But we need help, and we need compassion, and we need people to come by and say, “Can I babysit your other kid?” We need help, and we don’t always ask for it.

“For me now, watching him soar, watching him thrive . . . it’s the greatest gift”.

I counsel families all the time, whether they come to me through mutual friends, or whether I see them on social media, or whether someone hits me up on a DM. I’m like, give me your number. And I’ll stay on the phone for an hour with a new family and give them some encouragement, because I did not get that. Dr. Debbie Downer did not give me that. One of the most tangible things I tell them is to begin to build a team around your son or daughter so that when you’re not around, there are people who understand who they are, what they like, how they communicate. And advocate constantly. Don’t be scared to tell someone your son or daughter has autism, because it can help them understand.

Now, RJ is 25. We were told he would never drive, never have meaningful employment. And he just left in his car to go to Dodgers Stadium, where he works. For me now, watching him soar, watching him thrive, seeing him have friends, watching him have a whole baseball team who cares about him, watching him have purpose – it’s the greatest gift.

He’s a clubhouse attendant at the Dodger Stadium, which means he needs to have all the baseball players’ clothes lined up and their lockers all organized. And he’s got a brain for all that, because he remembers everything about every player; that’s part of his beautiful brain. The best part of it all has been watching him use his particular set of skills in a way that’s appreciated and valued. And that’s just beautiful. We went to an event at the Dodgers Foundation the other night, and the players all walked up to me and said, “You don’t even know what having your son in our clubhouse means to me.” That makes me very, very happy. On “The Never Day,” he wasn’t even supposed to have meaningful employment.

– As told to Lena Felton

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