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People Top 5
LAST UPDATE: Tuesday February 10, 2015 01:10PM EST
PEOPLE Top 5 are the most-viewed stories on the site over the past three days, updated every 60 minutes
- June 04, 2007
- Vol. 67
- No. 22
Fighting Autism with My Son
After Her Child's Heartbreaking Diagnosis, Holly Robinson Peete Battled Denial to Find Hope in Three Little Words: 'I Love You'
RJ was born two minutes before his twin sister Ryan. He was the most delicious piece of butterscotch candy I had ever seen: chunky, laid-back, with these big eyes and dripping juicy lips. Something drew me to him. When he started talking, "cow" was his first word. "Cow, cow," he would say, pointing his fat fingers at the picture. He and his sister were hitting all their developmental milestones right on time. He was sweet, had a great disposition and was always giving kisses and saying his few words. I will never forget that because one day he stopped. He went from saying "cow, cow" to nothing. Silence. Indifference.
That change happened when he was about 2½, very soon after he had received his inoculations for measles, mumps and rubella. I noticed he ceased making eye contact and responding to his name without loud repetitive shouts. "RJ, RJ, RJ!" we would scream helplessly. I called Rodney, who was traveling. "Something's going on with RJ." And he said, "Maybe he can't hear. Get his ears checked." But that wasn't it. Rodney, like every man who felt helpless when he couldn't fix things, called again. "Everything's okay, right?"
But it wasn't. Together we took RJ to a specialist. She was a rigid, hard-looking woman who sat us in this icy office. The room was cold; the toys were cold. I hated everything about the place. Even the diagnosis was cold. She said, "Okay, here it is. He is a mid- to high-functioning autistic child. Here are a few phone numbers." With pessimism in her voice she said, "Unprompted, he will never say, 'I love you, Mommy,' or run to you and greet you at the front door." Something died in me the day RJ was diagnosed with autism.
Rodney and I cried for hours. What did we do wrong? I was in denial for a month. Then that became anger. I was ready to fight for RJ, but Rodney lagged behind. He and my mom were in denial. It was harder for him to fathom that something was wrong with his firstborn son and his namesake. I gave them an ultimatum: Get on board with RJ's treatment or go.
Autism can present an insurmountable strain on a marriage. And faced with the idea of divorce, I said to Rodney, "Quite frankly, I'm not trying to do this without you." At the time, we had a life strategist who counseled us and we still do, but during the worst part of the autism crisis, it was just the two of us battling it out.
We fought for RJ to stay in this world. Hours and hours of expensive, exhausting intervention: speech, occupational, vision therapies—all with endless waiting lists. There wasn't anything out there I wouldn't try: diets, acupuncture, hypnotism and enzyme treatments. Some yielded results; others were a waste of time and money. In all, we have probably spent about $500,000 in treatments.
When RJ was 3, I met the administrator of a preschool called Smart Start in Santa Monica where we enrolled RJ. It taught kids with mild mental retardation, Asperger's disorder, ADHD. She had them all. I sat in her office after hours of talking to people, going online, researching more treatments, and I just bawled. She was the first person who talked to me like I was going to get through this.
RJ's tantrums and behavior were hard to handle, especially when Rodney was away. He would self-stimulate with repeated movements, called "stimming" in autistic children, by flapping his arms. On a bad day he would literally fall down and cry inconsolably. I felt completely helpless. He only ate three things: pizza, French fries or pasta. The smell of anything else would throw him into a tantrum. People would say, "Can you control your child, please?" I would say, "My son is on the autistic spectrum." They didn't know what that meant. People asked, "Why don't you go to church anymore?" I made up excuses. I didn't go because I didn't want him to be disruptive in church. I didn't want to see the looks on their faces. We worship in our own way.
Even friends did not understand. At playdates, RJ would come around and they would talk down to him. I lean on Jenny McCarthy and Tisha Campbell-Martin, who both have autistic sons. Jenny called me after her son was diagnosed. She said, "I'm sorry to call you, but ..." and six hours later we were both laughing.
I used to wake up in cold sweats visualizing my child walking around homeless. My dreams were so scary, they pushed me into action. After trying countless therapies, we settled on something called Floor Time. We get on the ground and get up in RJ's face to force him to interact. We would both have toy cars, and I had to crash into his car. I refused to give him enough time to phase out.
Never once did we think about sending him away. I chose a proactive, crazy-mama approach. Rodney had his own ways of teaching RJ. RJ went through a phase of repeatedly bouncing a basketball. So Rodney said, "If you're going to bounce the ball, then every five times you bounce it, you have to shoot it." We refused to let him bounce aimlessly. We are very goal-oriented. At 6 years old, our biggest goal for him was to have a conversation from start to finish. I say, "Hi," and RJ would say, "Hi, Mom. How are you?" I say, "I'm good and you?" and he would say, "I'm good too." Now RJ sets goals for himself.
I am just so proud of my boy. He is a happy 9-year-old about to enter the fourth grade at University Elementary School, a mainstream school. He struggles valiantly with subjects like math and reading and loves to write. Thankfully his classmates accept him just as he is. He blows us away with his ability to communicate now. The other day he said, "Mom, I know my name is Rodney Peete, but I don't want to play football. Is that okay? I want to play piano." I could barely get him to discuss his day with me two years ago.
Tantrums are now followed by RJ saying, "Okay, I'm going to play piano." He'll start playing beautiful arpeggios and scales. He will try any food now: salmon, brussels sprouts, salad. He leaves the athleticism to his younger brother Robinson, who competes with RJ for attention. His twin sister Ryan is never shy to step in for him. She mothers him, it's beautiful. And little Roman is just trying to roll with the big kids.
It's exhausting because we have to constantly love everyone, play up everyone's strengths and cheer for every little thing. But having a big family is important. I had Robinson five years after I had the twins because I didn't want Ryan to be the only one to have to take care of her brother. It was hard having to take care of my dad, who had Parkinson's, with my only brother. What if RJ can't live on his own?
RJ and I speak very frankly about autism. We treat it like a bully at school. I grapple with not wanting to make him a poster child, but he's a success story. I'm talking about it now because I want parents to have a glimmer of hope. Especially in the African American community, there's not a lot of information about autism. I want to take the scariness away.
Now that Rodney is retired, there are two of us to take care of the kids full-time. Even still, something as obvious as getting an eye exam for the kids got by me. Every day I'm packing backpacks, meeting teachers, scheduling treatments and heading up HollyRod, our nonprofit to improve the quality of life in Parkinson's patients.
And most amazingly, almost every single day for the last year, RJ, along with his three siblings, runs to meet me at the door with a kiss from those juicy lips saying, "Mom, you're home.... I love you." So much for never.
For more on autism, visit autismspeaks.org and cureautismnow.org.
February 08, 2016
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