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A Father’s Journey Across the Spectrum

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Being a celebrity is considered an advantage by many, but when your child is on the autism spectrum, any advantage is far outweighed by the same uncertainties that beset every parent affected by autism. Rodney Peete, a former NFL quarterback—now sportscaster for ABC—and Holly Robinson Peete, a well-known actress and model, have faced many of the same concerns as other parents of a special needs child. When their oldest child, R.J., showed troubling signs by the age of three, Rodney and Holly asked the same familiar questions:

What is happening to our child?

Where can we find help?

How can we face this challenge?

Rodney’s and Holly’s initial responses to R.J.’s condition were not unlike the average parent, but they came together to meet autism’s challenges. In a recent interview, Rodney candidly spoke about what he and Holly faced with R.J., and how they responded.

What is happening to our child?

As the celebrity couple eagerly awaited the birth of their first child in 1997, they were surprised to find out that they were going to have not one, but two babies! Excited by the possibility of twins, they named the boy, Rodney, Jr. (R.J.) and the girl, Ryan Elizabeth.

Not very long after the babies were born, Rodney and Holly knew that something was different about R.J. Around the age of three, the doctors diagnosed him as having autism. The Peetes received the same “misinformation” that many in the medical community gave other parents.

“Some [doctors] said that R.J. would never speak, would never be mainstreamed in school, would never say, ‘I love you,’” Rodney explained.

This list of “nevers” went on and on, causing Rodney to enter some of the stages of grief. “Denial” became his immediate response. How could something like this happen to his boy? The diagnosis must be wrong! “Denial” flooded Rodney’s very being. “First instinct is to not believe it,” Peete said. “It can’t be. It can’t be.”

Holly Robinson Peete, having been through her father’s diagnosis of Parkinson’s disease and his increasing decline, recovered enough from the autism diagnosis to begin researching this little-known disorder. Rodney freely admits that his wife was the “rock” during this time. Holly hired therapists to help their son: speech, physical, occupational, etc.

“Anger” soon replaced “Denial” for Rodney Peete. He thought that the various therapies were not beneficial at all. Why pay for something that was not helping?

Then came the day when a therapist wanted Rodney to “engage” with R.J. The therapist told Peete to get on R.J.’s level and look him in the eyes. R.J. was playing on the floor with a toy, so Rodney got down on the floor by his son. R.J. paid no attention to him, avoiding eye contact. This was typical for R.J.

Frustrated, Peete got up and then saw the therapist reach out to R.J. and get him to engage with her in a way that his father had not been able to do. Angrily, Rodney stalked out of the room and “retreated” for several days. It took a while, but “Acceptance” replaced “Anger.”

Where can we find help?

So, R.J. had autism. What could be done? The doctors said that there was very little that could help a child with autism, but Holly did not believe in doctors who only focused on the negative. She was the first to want therapy for R.J. “Speech therapy, occupational therapy, physical therapy, any kind of therapy you could think of. Someone suggested to us that he would, like I said, need 40 hours of it a week,” Rodney said.

The Peetes initially started the HollyRod Foundation to focus on Parkinson’s. However, after R.J.’s diagnosis, autism became the foundation’s additional focus. “We were looking up and seeing the difficulties, especially financial, that families were going to have dealing with Parkinson’s, because not everything was covered through insurance. We established the foundation under those reasons, and then when our son was diagnosed with autism, we switched gears a little bit. Still stayed with Parkinson’s, but autism became a focus of ours, as well.” As Rodney points out, both autism and Parkinson’s suffer from a lack of public support.

Of course, the Peetes had to struggle through red tape to help R.J. get where he is today. The logical first place for educating R.J. was to get him into one of the “special needs” schools. After several of those schools said that they were not equipped to handle R.J., the Peetes looked at public education for their son. Fortunately, the Peetes discovered the UCLA Lab School, an elementary school on the campus of the University of California, Los Angeles. The school welcomed R.J., and said that it would be a positive learning process; not only for him, but for the entire school. UCLA Lab School allowed R.J. to grow at his own pace, become “mainstreamed,” and form friendships with other students.

While meeting R.J.’s educational needs, the Peetes considered the many students in public schools with limited resources. So the HollyRod Foundation partnered with Microsoft to provide special needs children in various schools tablets, laptops, and other devices that enable non-verbal children to communicate. A child types, and an artificial voice repeats what has been typed. Now kids that have never spoken are having conversations with their parents or friend by typing on a tablet! While this technology is not new, it has not been within reach for most people because of price and availability. The HollyRod Foundation and Microsoft are working diligently to change that.

How can we face this challenge?

After Rodney’s initial denial, the Peete’s faced R.J.’s challenges as a family. Upon retiring from football, Peete became a successful sportscaster. Does it help that his current job allows him to be home more? “Yeah, definitely. I really try to pride myself on being an involved dad and being engaged in my kid’s life—that’s most important for me.”

In addition to having supportive parents, R.J.’s twin sister Ryan has always been his advocate. When the two were very young, some parents did not invite them to birthday parties and other events because if they invited Ryan, she would insist that R.J. also be invited. Even when both of the children were included, Ryan would often have to take R.J. home before the end of the party.

It is a well-known fact that autistic children have sensory issues, and one of those that challenged R.J. was his hypersensitivity to noise. For example, when Rodney took young R.J. into the football team’s locker room, the boy would almost always crawl up into a “fetal” position in response to all the laughing, slapping, and loud talk. Peete thought that R.J. would enjoy the locker room as much as he had when his father (a coach) had taken him. Rodney admits learning that, “Every child is different. You can’t put them in a box. Each child is on a different level. What works for one may not work for another.”

It was a “miracle” for R.J.’s development that he and his twin sister were the oldest. His siblings were too young to give him any slack—they just knew that he was their brother. The “normal” boys expected R.J. to talk to them, play with them, and help them. This is one of the reasons that the Peetes encourage parents of an autistic youngster to have another child (or two), if possible.

Again, embracing the diagnosis wasn’t easy. Rodney admits that Holly was the first to “recover,” the first to do all the research, and the first to seek help for R.J. Rodney took more time to meet autism head-on. “My reaction was totally different than Holly’s,” he said. Perceptions have really changed, not only for Rodney, but also for many others. “… now people say, ‘you really helped me to get through it.’” Men, especially, connect with Rodney. “Again, going back to having that voice and having that platform, being able to share a story that’s common with a lot of people out there who don’t have that kind of voice, of if they’re wondering if they’re the only one like that out there, or going through these type of feelings as a man, as a dad, they can hear it and see it from me that they’re not the only one.”

So how is R.J. doing?

Early treatment (with an early diagnosis) can enable people with autism to improve in many ways, but not everyone will get to the high end of the autism spectrum. Some children with autism will not be able to live independently after both parents (or caregivers) are gone. However, R.J. has progressed to the point that his father and mother are confident that he will someday live on his own. He has a terrific memory. R.J. knows all the bus routes, goes home from school on the bus everyday on his own, takes the bus to the local mall, has passed the written driving test, is going to take the actual driving test soon, plays sports, etc. He has certainly proven his initial diagnosis wrong!

R.J. loves music, plays the piano, and really likes playing the bass guitar (one of his uncles plays the bass and deejays around the L.A. area). Although Rodney is not musically gifted, he knows that music is a wonderful part of his son’s life: “Being able to communicate through music he likes, what he likes to hear, what he likes to play, is important.”

As R.J. has grown, so has the scope of the HollyRod Foundation. The Peetes recognize that young and older adults on the spectrum are in a “forgotten group.” So much focus has been on finding a “cure” for autism (Rodney does not believe there is one), early intervention, diagnoses, etc., that hardly anyone or organization has thought about the fact that these youngsters do indeed grow into adults. The Foundation wants more support for those “left by the way-side” young adults who need help in finding jobs, living arrangements, etc.

Rodney Peete has obviously replaced his initial demons with education and action. Peete knows that he is luckier than most people facing the challenges posed by the autism spectrum, yet he remains humble. “I may have a good life, my wife is an actress and all that, but we still have family problems and real family issues. How you deal with them is no different than anyone else. You can’t hide your feelings.”

One can only imagine the joy he feels when his son says what doctors said he wouldn’t, “I love you!”

 

 

Polly McGlew has a B.S. from Texas A&M and a J.D. from The University of Texas at Austin. Ms. McGlew has practiced law, both as corporate general counsel and managing partner of a private law firm. She has been an officer in many corporations, as well as a corporate director. A published author, McGlew has also edited many books, including the award-winning Inclusive Programming for Elementary Students with Autism.

 


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