As we observe National Parkinson’s Disease Awareness and National Autism Awareness this month, Sherri Snelling, our caregiving contributor, recently spoke to Holly Robinson Peete, TV star, singer and author. Holly knows first-hand about the caergiving experience; Her father suffered from Parkinson’s and her oldest son, RJ, is living with autism. This sandwich-generation caregiving star is one of more than 24 million people who are sandwiched between two generations, caring for a child or children still at home and providing assistance or full-time care to an older parent. In this interview, Holly talks about getting rid of guilt, keeping her marriage in play and leading Team Peete to help others.
It was in the 1980s when Holly was still in college at Sarah Lawrence in Bronxville, New York, that Holly’s father started showing the early signs of what would be eventually diagnosed as Parkinson’s disease. He was only 46 years old.
Her father, Matthew T. Robinson, Jr. was a producer and also played “Gordon” on the award-winning PBS-TV children’s program “Sesame Street” in the 1960s and 70s. In the late 70s and 80s he went on to become one of the most prolific TV screenwriters for shows such as the wildly popular “The Cosby Show.” Keeping up the family tradition, Holly gave acting a go in the 1980s and 90s and was riding high on a career that saw her become a breakout TV star on “21 Jump Street” alongside a then unknown Johnny Depp, followed by her star turn on “Hangin’ with Mr. Cooper.” During this time, since Holly’s parents were divorced, it was up to Holly and her brother to support their father as his disease progressed.
It is estimated that one million people have been diagnosed with Parkinson's Disease, and each year there are 60,000 new cases in the U.S. This neurodegenerative brain disorder is characterized by a progressive destruction of cells in the central nervous system that causes patients to lose control of their normal body movements. While later stages of the disease are devastating, early warning signs can be subtle and progress gradually. Not every PD patient has the same symptoms. Some experience poor balance and frequent falls, rigidity or muscle stiffness, tremors, and Bradykinesia, which is the slowing down or loss of movement (shuffling steps, loss of one arm swing when walking, and difficulty or inability to turn the body). The most high profile people living with PD today are the actor Michael J. Fox and former world heavyweight boxing champion Muhammad Ali.
“My first reaction to my dad’s diagnosis was ‘what is Parkinson’s’?” says Holly. She raced to the library to find out everything she could about the disease. “I saw two words in the books I read: neurological and incurable. I felt helpless and in a dark place, and it was hard.”
While still providing care to her dad, Holly had fallen for Rodney Peete, a superstar college football player at USC and one of the NFL’s best quarterbacks with a 16-year career playing for the Philadelphia Eagles, Washington Redskins, Dallas Cowboys and Carolina Panthers. They were married in 1995 and two years later Holly was a new mom to fraternal twins Rodney Jackson and Ryan Elizabeth.
But her father’s illness was progressing to a point where he needed around-the-clock care, and Holly and her brother decided he needed to live in a special-care facility. Since Holly lived in Los Angeles and her father was in New York, this made Holly one of the eight million long-distance caregivers.
“The day we moved my dad into the facility was singlehandedly the worst day of my life. To this day I still have regrets about the decision but there really were not a lot of choices,” says Holly, with the pain still evident in her voice. She had her twins, a husband who was on the road for six months out of the year and she was pregnant again. “The guilt has never really gone away but I don’t hold myself accountable anymore – it was a hard choice but really the only choice.”
It was during this painful period in Holly’s life that her three-year-old son, RJ, was given a devastating diagnosis: autism.
“When we were told about RJ, my life just stopped right there in that doctor’s office,” says Holly. “I call that day the never day – we were told all the things my beautiful baby boy would never do and at first I felt ten times more than hopeless. Even though my dad was young when he was diagnosed with Parkinson’s, it was totally different to hear that your three-year-old child will never really do anything normal.”
What happened next came out of left field for Holly. Her husband Rodney had been “my rock while I cared for my dad,” always there to support his wife and the father-in-law who adored him. But, suddenly with RJ’s diagnosis, Rodney became withdrawn, frustrated and in denial.
Initially, Rodney was in denial about RJ, and as is typical of fathers of special-needs children, he distanced himself and was less involved in the daily struggle, in part because he was still playing on the road in the HFL.
It’s estimated that 85 percent of parents with special-needs children divorce, but Holly actually thinks the distance saved their marriage. “It gave me time to cope on my own without facing Rodney’s different attitude and ideas about RJ,” says Holly. “Rodney originally thought RJ just needed more discipline, I knew it wasn’t about that at all.”
While Rodney retreated, Holly got to work. She learned everything she could about autism in the same way she had educated herself about Parkinson’s disease. Holly learned that autism impairs a person’s ability to communicate and socialize normally with others and often has a physical manifestation of repetitive behaviors. Statistics show that one in every 110 children has autism spectrum disorder (ASD) and symptoms can be subtle or significant.
Given little hope by doctors for RJ’s ability to assimilate into normal childhood, Holly refused this dismal outlook for her son and turned to alternative measures. She found a wonderful autism therapist, she established a gluten-free diet for RJ that had some very positive effects and she brought soothing music into his life. When RJ recorded his first music single, Holly believes it was a way for him to not feel “judged” as he often did during sports or other activities. She also maintained as normal a life as possible for her other children, which in addition to RJ’s twin sister Ryan now included sons Robinson and Roman.
During this time, Rodney and Holly admit, they had a lot of conflict. In reflection, Holly says, “I wish I had been more patient with Rodney and respectful of his denial, but I was too focused on RJ.” But that changed. “Rodney had that ‘oh my god’ moment when he realized he could lose his family, but he chose instead to enter into the fight and save us all.” Just a few weeks ago on Valentine’s Day, Holly and Rodney renewed their marriage vows with all four children as their attendants.
Rodney credits an autism father support group with helping him understand that instead of being dismayed with RJ’s inability to operate in Rodney’s world, Rodney learned to enter RJ’s world. The result was Rodney’s 2011 book, "Not My Boy! A Dad’s Journey with Autism," which he hopes will help other fathers of special-needs children who are struggling to understand their situation and create a “new normal.”
Holly co-authored a book for Scholastic with her daughter Ryan who wanted to help other kids learn about her brother’s autism. The book, "My Brother Charlie," gave Ryan a hero’s role in her brother’s daily challenges and won an NAACP Image Award. And, together Holly and Rodney have built the HollyRod Foundation, originally created to support families facing Parkinson’s to honor her father now expanded to also help families living with autism in recognition of the lessons the Peetes have learned from RJ.
Her relief from the guilt she says is inevitable for all caregivers comes from the impact of the HollyRod Foundation. “At some point, you take your guilt and you move on and I did that by paying it forward,” says Holly. “Knowing that my family can help others and maybe ease their caregiving journey is the best gift of all.”
Spoken like a true superstar.
Sherri Snelling, CEO and founder of the Caregiving Club, is a nationally recognized expert on America’s 65 million family caregivers with special emphasis on how to help caregivers balance “self-care” while caring for a loved one. She is the former chairman of the National Alliance for Caregiving and is currently writing a book about celebrities who have been caregivers. You can find more information at: www.caregivingclub.com.