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“I wouldn’t change RJ for the world, but I would change the world for RJ”

Actress, author and advocate Holly Robinson-Peete remembers saying the word “autism” for the first time on the Oprah Winfrey show. “Whenever you share your platform, it is powerful, “ she said.

Robinson-Peete was the keynote speaker March 2, 2018 at the Michigan Council for Exceptional Children conference in Grand Rapids. In an upbeat presentation, the engaging celebrity recalled her own family’s autism journey and encouraged the audience to share their experiences with others as well.

The Peete twins, Rodney Junior and his sister Ryan, were born Oct. 17, 1997. Robinson-Peete beamed when she told of her happiness at having boy/girl twins. Two years later, Rodney Jr. or “RJ” as he is called, was diagnosed with autism.

“We didn’t know a lot about autism,” Robinson-Peete said. “We didn’t see a lot of celebrity people talking about it, “I was pretty lost.”

RJ’s sister became one of his biggest advocates and made a video about her brother entitled “Meet RJ.” Ryan’s “Autism 101” included: never say something embarrassing, level the playing field, accentuate the positive, encourage patience and have a sense of humor.

“Being too serious doesn’t help,” Robinson-Peete added, saying how proud she was of Ryan. “Siblings are often forgotten. “They’re not the squeaky wheels.”

When RJ was young, Robinson-Peete looked for children’s books explaining autism and they were sad not to find any. So, she and her daughter Ryan wrote “My Brother Charlie” as a way to introduce autism to RJ’s peers. She recalled that one of her most rewarding speaking engagements was talking to a group of third- and fourth-graders at her son’s school. “The kids were very receptive,” she said. “Kids are often more open than parents.”

RJ knew a lot of facts about presidents and sports figures but had difficulty making friends, according to Robinson-Peete. When he reached adolescence, she and her daughter wrote another book, “Same but Different.”

Robinson-Peete’s husband, football star Rodney Peete, also wrote a book from a father’s perspective, entitled “Not My Boy.” “Rodney struggled with the concept that his son was not going to do all the things he thought,” Robinson-Peete said. “He had to tweak his expectations.”

Robinson-Peete recalled that her husband’s football career took him away from home a lot, leaving her with two small children and her father battling Parkinson’s disease to care for. Her father was Matt Robinson, who was the original Gordon on “Sesame Street” and also worked as a writer for television series such as “The Cosby Show” and “Eight is Enough.”

The Peetes formed the Holly-Rod Foundation to help families coping with Parkinson’s. When RJ was diagnosed with autism, they expanded the mission of their foundation to include that condition as well.

Robinson-Peete presented a brief overview of autism in America, noting that one in every 68 individuals is on the autism spectrum. The financial burden of care for an individual with autism can total $3.2 million over a lifetime, she added.

“RJ growing up has been a journey,” Robinson-Peete said. “These children grow up to become adults with autism. “They hit this cliff and then they fall.”

Against a backdrop of slides of animals with their babies, Robinson-Peete noted that she and her husband are “fierce protectors” of RJ. “It is very important for us to constantly advocate for our kids,” she said.

And, what great advocates they are. They have opened “RJ’s Place,” a new initiative to help individuals with ASD gain vocational skills. Through partnerships with businesses such as Microsoft and Stella & Dot, the Holly-Rod Foundation is able to provide technology. RJ’s Place has a location in Detroit with another expected to open in Los Angeles in a few months.

“How can we set them up for success?” Robinson-Peete asked, noting we need to ask this question to help every young person on the spectrum. “Just because they’re nonverbal doesn’t mean they can’t work.”

Perhaps the greatest advocate in the family is RJ. He is a poised young man who works as a clubhouse attendant for the Los Angeles Dodgers. He also worked as a model. On the family’s Hallmark network reality show, “Meet the Peetes,” he is often shown providing encouragement and hope to other individuals with autism and their families. He lovingly interacts with his grandmother, uncle, parents and siblings Ryan, Robinson and Roman. “RJ knows he’s here as a vessel from God,” Robinson-Peete said. “It’s not just about my kid, it’s about all kids on the spectrum.”

Although she never intended to become “the autism celebrity family,” Robinson-Peete is grateful to share her experiences to help others. She recalled a trip to Disneyland during which another family approached her to say thanks for speaking out about autism.

Robinson-Peete recommended using humor to brighten the dark days that we often face. She laughed as she told about RJ using his autism as an excuse for leaving a pizza under his bed. “I said, ‘Why did you do it,’” she said with a smile. “He said, ‘Because I have autism.’”

She turned serious as she concluded her presentation; thanking and encouraging the parents and educators for caring about individuals with autism and saying she was blessed to have resources and will continue fighting for those who do not. “I wouldn’t change RJ for the world, but I would change the world for RJ,” she said.

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