Holly Robinson Peete on ‘the gift of caregiving’

Since 1967, the Capri Theatre has brought local and national performers and celebrities to its stage in North Minneapolis. On Tuesday, May 23, nonprofit AARP, an organization that represents people aged 50 and older, brought Holly Robinson Peete of The Talk and 21 Jumpstreet to the Capri’s stage for a conversation on family caregiving. “I was in what they call the sandwich generation,” Robinson Peete said of her dual role as caregiver for both her father and her son.

The evening included a film about four Black jazz musicians who are also caregivers in Stepping Up: Stories of Jazz and Caregiving. The conversation with Robinson Peete was moderated by KMOJ morning show host Freddie Bell.

From 1969-1972, Matthew Robinson, Jr., Robinson Peete’s father, played Gordon on PBS’s Sesame Street, the first children’s show with a diverse cast of characters. He created the Muppet Roosevelt Franklin, an African American Muppet, for the show.

He was also a writer for the Cosby Show for its nine-year run and wrote the famous “Night and Day” episode. He wrote for TV shows Sandford and Son, The Waltons, and Eight is Enough as well.

During her freshman year in college, Robinson Peete recalled her father walking with a limp and asked, “‘Daddy, why are you walking like Fred Sandford?’ And he said, ‘Don’t worry about that. Just get good grades or you’ll be running a junk yard,’” she said.

The following Christmas he had a case of Bells palsy; one side of his face was paralyzed and droopy. At the age of 45 he was diagnosed with Parkinson’s disease.

“It was 1983, and [there was] no Google, no PCs. We didn’t have the Internet. We didn’t have any information. I didn’t know what Parkinson’s was,” she explained. “So I went to the library, but all I saw for Parkinson’s at that time was [that it was] neurological and incurable… There was no Mohammad Ali yet, no Michael J. Fox. There was no face to Parkinson’s.”

She became her father’s caregiver, and with little information, she said her caregiving techniques were based on trial and error. Robinson Peete told the MSR, “In my experience, it’s mostly women — mostly the daughters — who end up doing the heavy lifting of caregiving. But it really is everybody’s responsibility.” Her father lived 20 years with Parkinson’s, dying at age 65.

Just last year, her only brother was also diagnosed with Parkinson’s. In 1997, she and her husband, Rodney Peete, former NFL quarterback, formed the HollyRod Foundation. Its mission is to improve the quality of life for people living with Parkinson’s and the caregivers who support them.

Much like her dad’s Parkinson’s diagnosis, Robinson Peete was unprepared for her son’s diagnosis of autism when he was three years old. “We get this diagnosis, and we’re told by a pediatrician that our son would never have a meaningful conversation, go to a mainstream school, play organized sports — and for Rodney that was like the worse thing ever.

“And he would never say, ‘I love you.’ He wouldn’t interact with us as parents in the way that typical kids act.”

After the diagnosis of autism, behavioral therapy should begin immediately, Robinson Peete explained to the MSR after the event. An early diagnosis is critical. Though her son was diagnosed at age three, she said her maternal instinct led her to see issues at age two.

“I still kick myself for not getting him that therapy for that one year,” she said. “It’s a very crucial time. So the sooner you diagnose, the better the kid has a chance of making it in the world. I just can’t stress that enough. So many kids get diagnosed when they are 12 and 13.”

She said her son, RJ Peete, now age 22, does in fact now say, “I love you.” He has a job and drives.

In 2005, the HollyRod Foundation’s mission expanded to include support and resources for families affected by autism. Robinson Peete and her daughter co-authored two books about autism: My Brother Charlie, a children’s book published six years ago that explains autism, and Same But Different: Teen Life on the Autism Express, a recently released book about adolescence and autism.

Robinson Peete said the biggest benefit she has derived from her experience with both her dad and her son comes from advocating for others. “The gift of advocacy, it’s really a special gift, because you’re going through things and there is nothing more cathartic than to take those things and use them as a tool to help other people,” she explained.

“I don’t mean that trying to be self-congratulatory,” she continued. “It’s really good to know that you’re able to get other people through things that they didn’t think they could ever survive.”

Part of her advocacy work regarding autism is fighting for RJ’s law. “My biggest fear is that my son is going to be stopped by the police and not be able to process the police’s cues, because children with autism and special needs don’t process things the same way, and so I don’t want [my son] to be some kind of casualty of that.” The legislation supports putting information on driver’s licenses that would identify those on the autism spectrum.

Recently, Robinson Peete was asked to introduce a new Muppet to the Sesame Street cast: Julia, a Muppet with autism. “They asked me, Gordon’s daughter, to come and introduce Julia, and I could barely keep it together. I could feel my daddy in the room.”

Vickie Evans-Nash welcomes readers’ responses to vnash@spokesman-recorder.com.