Caring For My Sick Dad and Son With Autism Wasn't Easy, But Here's How I Made It Work
*As told to Adrienne Farr
My dad, Matt Robinson, the original Gordon on “Sesame Street,” was diagnosed with Parkinson's at the age of 45. I was a freshman in college, only 19 years old. I didn't know what to do. It was the '80s and there was no Google. I remember going to the library and looking up information about the illness. Through that research I found Parkinson’s was neurological and incurable. I became the caregiver for my dad from that time until he passed away in 2002.
While I was caring for my dad I married Rodney Peete. As the divine would have it, the night of our wedding Rodney got traded to the Eagles, my dad's favorite team. Dad was so excited! A couple of years later my twins, RJ and Ryan, were born. There I was, a new mom of twins, a wife, and a caregiver for my dad.
I went back to work as an actress when my kids were just 4 months old. By that time, my dad was also suffering from dementia and wasn't really speaking. I thank my husband because even though it all felt so hard, he was the one that let me see how blessed we were to be able to care for my dad both physically and financially—the amount of money it costs to take care of a parent is astronomical.
A post shared by Holly Robinson Peete (@hollyrpeete) on Jun 16, 2019 at 8:52am PDT
As I watched my dad's health deteriorate, I also realized my son RJ was falling behind in his development compared to his twin sister Ryan. When he wasn’t conquering milestones the same way she was, I was concerned. The first doctor we took him to said we shouldn’t compare our boy to our girl. He said every child develops differently, but I knew something was off.
RJ was diagnosed with autism at the age of 3. This really knocked Rodney and I off our feet because we didn't know what we were supposed to do. Just like with my dad’s Parkinson's diagnosis, I tried to devour all the information I could on autism. I was a prime example of being part of the sandwich generation, a group of adults who are taking care of aging parents while raising children.
My dad’s health continued to decline and his dementia got a lot worse. He also began to wander and I’d have to go get him. Autism is a lot of wandering too—it’s called elopement. One time RJ was missing—he got out and was on the roof. We were outside screaming his name but as a young boy with autism, he couldn't process the fear in our voices. So now everything had to be adjusted—from refitting our house so my dad had the right bathtubs to making sure we had alarms on our doors. We had to tighten up and make sure that everyone was watched at all times.
A post shared by Holly Robinson Peete (@hollyrpeete) on Sep 15, 2019 at 1:24pm PDT
In the midst of all this, my daughter Ryan was being left out. She’s in college now and is finally able to put a voice to all that she was feeling. Ryan had no margin for error. She had to go through a lot of therapy. I am trying to be more vigilant with Roman and Robinson, my two sons born after the twins.
As a member of the sandwich generation, it's almost a scary feeling to be so depended upon. You can get lost in the caregiving and if you don't take care of yourself, run the risk of having a nervous breakdown or stress-related illnesses. I used to feel tremendous guilt even thinking about taking time for myself. Friends had to kidnap me and take me to a spa or force me to slow down. I know this is true for many of you. I hope some of the suggestions I’ve included can be of service to you as you continue on this journey.
Give Yourself a Break
Channel some time into something positive because you're no good to anybody if you're not good to yourself. If the caregiver doesn't get care then the caregiver can't care. So now I meditate, I get on the treadmill, I take a boxing class, or go in a room and just yell. Do whatever you have to do to vent your emotions in a constructive way.
Be Wary of a Doomsday Diagnosis
My darkest moment came when RJ was diagnosed with autism as I was caring for my dad. Rodney and I sat and listened to all the things he would never do. He will never say, “I love you,” he will never go to college, he will never drive, he will never have friends. But kids with autism go on to do amazing things. They may not do it in the same way or at the same speed. They may learn and function differently, but these children have beautiful, unbelievably unique brains. RJ does everything we were told he wouldn’t. I have met so many people with autism along this 19-year journey that have defied the odds too. That's one of the reasons why we wanted to do our reality project Meet the Peete’s to show people what is possible.
Make A Difference However You Can
I give Rodney credit for helping me realize we needed to begin a life of service as a result of watching my dad's struggle. Most people with a regular job do not have the money to take care of their kids and parents. With health insurance in this country as inexcusably terrible as it is—it's really a struggle. We decided to start a nonprofit that would provide compassionate care and services to underserved individuals and families that were burdened financially and emotionally by a diagnosis. Our goal with the HollyRod Foundation was to help people get their medicines funded while they wait for Medicare to kick in. And once RJ was diagnosed with autism, we expanded our focus to include helping kids with autism and their families with assistive technology, vocational training, specialized job placement, and much more.
Holly Robinson Peete (right) and her mom. PHOTO: GreatCall
Build a Team Around Your Aging Parents
My mom Delores absolutely loves the aging process. She wears a neon sign with her age (83) on her shirt. If you look up the antonym for age phobic, my mom’s picture will be right there. She’s very social and planning her next chapter of life. Mom moved down to Palm Springs and she's got all these fabulous men around her. But even though she won’t admit it, she is slowing down. I have embraced her neighbors and her friends. I have all their numbers. So if your parent isn’t living in your home or right down the street, you can call one of their team members that’ll hopefully say, “I checked in on her, she's fine.” Get to know the people that your parents interact with, make them your friends, and put them on your team.
Stay On Top Of Caregiving Resources
I don’t need to worry about my mom as much as when I was an extremely hands-on caregiver for my dad. My mother and many actively aging parents are independent and the minute you try to pull that away from them, they rebel and you end up getting into situations that don't work for the caregiving scenario. That’s one of the reasons I partnered with GreatCall. They get who these adults are and the whole actively aging process. There’s 24/7 access to nurses and doctors, fun and challenging brain games, urgent response agents, and more.
Take Care of Your Intimate Relationships
We talk about self-care, but somewhere in the middle of all of that you have to find moments to take care of your intimate relationships too. Even something as simplistic as acknowledging the fact that you want to make time for them. I told my husband once, “I know that I'm running myself ragged taking care of my dad and RJ but I need time for us as well.” That alone opened up a stream of understanding. It sounds hard to do, but it doesn't take much. Expressing yourself can make things happen.
