This Is What It’s Like to Raise a Child with Autism, According to One Celebrity Mother
In 2000, my husband and I didn’t know what autism was—let alone how to treat it. But there we were, rookie parents with three-year-old fraternal twins Ryan and RJ, finding out that our son RJ has autism. We were devastated. I mean, as a mom you know when something’s up with your kid. I didn’t need a doctor to tell me that RJ was developing slower than his sister Ryan. My husband, on the other hand, was deeply steeped in denial. He just kept telling me, ‘Boys develop slower than girls. Don’t compare him to his sister.’ It put a strain on our marriage. I found out later that parents of kids with autism often struggle to stay together. We are no exception.
We call the day RJ was diagnosed “never day,” because the pediatrician kept listing all of the things he would never do. He’d never speak, never go to a mainstream school, never say, ‘I love you,’ never play sports. Let me tell you, when you’re a parent and someone tells you what your child will never do, all of those “nevers” are equally devastating. At first we were angry. We were frustrated. How dare she tell us who our son is at such a young age? She didn’t give us much hope. And when I started researching, I was surprised to learn just how little people knew about autism. We couldn’t get any answers, any hope that RJ could accomplish the “nevers.” People shrugged their shoulders and doctors didn’t know much about it at all. The hardest part was tweaking our expectations for our son. It was a pretty dark time, until we met people like speech therapists and other families on what we call the “autism express” journey. They gave us hope along the way. Eventually my husband came around, too, and we feel so blessed that our marriage survived. There’s no manual, no Welcome to Autism handbook. You just have to go through it to get it. And the autism community lifted us while we learned what was possible through their journeys with their kids.
Raising a child with autism is extremely frustrating. RJ learned totally differently than his twin sister. Everything was kind of in slow motion for him, from learning how to tie his shoes to brushing his teeth. And it was hard for Ryan, too. When you have a sibling with autism, you do feel a little neglected. But I tried to give her the one-on-one attention she needed. Deciding to have more children after Ryan and RJ was hard, too, because it’s a lot of work when you start off with twins. But I also wanted to build a team around RJ. When you have a kid with autism, one of your biggest concerns is what happens when you’re gone? Who is going to take care of him? That’s why I’m so proud of the way my family, including our two younger children, have rallied around him. I'm also encouraged by corporations that are embracing the autism community in ways they didn’t when RJ was diagnosed.
This April, for Autism Awareness month, I’m doing a campaign with Colgate because it really hits on those life skills like hygiene that were the hardest things for RJ. Colgate recently launched and sponsored five guides on the MagnusCards app. Magnus Cards is a free app that empowers kids with autism. It gives them step-by-step instructions on how to take care of themselves right on their smart phones. Colgate's cards on the app help establish those healthy oral care routines like proper tooth brushing to visiting the dentist, which can be a traumatic ordeal for kids with autism. We didn’t have anything like MagnusCards for RJ when he was little, but he uses them now. And I love the opportunity to share tools that work with other parents.
Now, at 21 years old, RJ still has his challenges. He’s never had a girlfriend or even been on a date. He had very few friends. On our Hallmark show Meet the Peetes, we gave him a dance, because he’s never been to a school dance before. But the most amazing thing has been seeing how many “nevers” RJ has checked off his list. We were told he would never speak. And then around age 10 or 11, RJ found his voice and started to articulate his feelings—that was probably the number one gift we’ve ever gotten. And he keeps surprising us, giving us more and more hope. The best days are the small wins. I remember the first time RJ called his little brother a “doo-doo head.” That sounds really random and stupid, but that’s what a typical older brother might do. My husband and I were so excited we were running around high-fiving, all because he insulted his little brother. But seeing typical older brother behavior was a win.
We were also told he would never work. And now RJ is working as a clubhouse attendant or “clubby” for the Los Angeles Dodgers. He gets everything ready for the team, and they love him. I always thank the Dodgers for being so kind to my son. But they’re like, “Listen lady, this stud brings so much love to the clubhouse, you don’t understand. When we have hard days, we look to him. He makes our day brighter.” That’s what keeps me going. Oh my gosh when that beautiful, innocent young man comes home from work, it can make me cry. We never thought we'd see him be confident in his life like that.
Being a parent is hard. Period. But being a parent of a special needs child is triple hard. Moms of special needs children learn you don’t know how tough you are until you have to be tough. Now, we’ve been told that we can be a little gangster or hardcore from time to time. But we have to be because we’re advocating all the time for kids that often can’t advocate for themselves. And it’s a blessing to be able to do that. I’m proud that my husband and I have used our platforms to raise awareness. Corporations like the Dodgers, Hallmark channel, and Colgate are stepping up, and I like to think we’ve had something to do with that. Being open about this wasn’t easy, but it has given us an opportunity to show RJ’s strength, which is something you don’t get to see when you’re too busy saying what kids with autism can’t do. Showing what they can do is really important.
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Autism remains the fastest growing cognitive special need in the United States, affecting the 1 in 68 kids diagnosed every year in different ways. I want people to look at RJ and go, “He’s such a cool kid!” and think about all kids with autism the way they think about RJ. He’s a source of hope and inspiration for people, and that’s what I want him to be. I want more corporations to hire young people with autism. I want to see more organizations support parents of kids with special needs that work for them. Kids with autism can cross off so many “nevers” from their own lists. And if you just go out of your way to get to know them, you’ll find some pretty cool people with amazing abilities, just like RJ.
—As-told-to Shalayne Pulia
For more information on MagnusCards, visit magnusmode.com.