Written on April 15, 2013 at 3:41 pm , by Lynya Floyd
When I met Holly Robinson Peete a few years ago, I couldn’t help but be in awe of her passion. It wasn’t just for being an actress or a phenomenal mom (that’s four kids and two big dogs in the pic!), but for her autism advocacy. Her 15-year-old son RJ has autism, which she has spoken about openly in interviews and even co-wrote a book on the subject. She also co-founded the HollyRod Foundation, which helps families living with Autism and Parkinson’s disease. As my favorite hashtag in her Twitter bio says: “#ServiceIsTheRentWePay4Living.” Here’s what she told Family Circle about how having a child with autism impacts a marriage (she’s the wife of NFL Quarterback Rodney Peete), why the teenage years are so trying and the reason we all need to befriend a teen with autism today.
Q. So often we see stories in the news about autism that are focused on very young children and even the pre-natal habits of moms. As the mother of a 15-year-old son with autism, what do you think has been missing from the discussion of older kids?
A. That autism is in many cases a lifelong disorder and when children find themselves at the intersection of puberty and autism it can be an unforgiving combination. Many teens with autism struggle so often with new challenges like OCD, depression, regression, seizures, social ostracization and other issues. Being a typical teenager isn’t easy. When you have autism, it can be extra difficult. We need more public awareness about these hurdles as well as compassion towards these young people.
RJ is 15 (and he has a twin sister Ryan who does not have autism) and his biggest issue is his difficulty making friends. The teen years are rough with peer pressure and it can be crippling for someone with social skills deficits. If you have the opportunity to befriend a teen with autism, please do it. They need you.
Q. When we met a few years ago, I remember you spoke about the challenges of getting your husband Rodney to connect with RJ at first. Can you offer advice for our readers who may be experiencing the same thing with their husbands right now?
A. First, I would say to get my husband Rodney’s book Not My Boy. He is a man who stayed deep in denial about his son’s autism for years. He had to learn to tweak his expectations for his son, discover a new normal that flew in the face of every dream he had for his boy. I made him write this book because I wanted other dads to not feel so alone.
I thank God for Rodney every day. We came dangerously close to going our separate ways. I just couldn’t fight for my son and my marriage at the same time. I needed him on my team.
Q. Can you talk about how having a child who is autistic impacts a marriage? You’ve said that this is something the media doesn’t discuss enough so let’s try to change that.
A. There is sadness, blame, guilt, resentment, fear, mistrust, financial and emotion stress – just a slew of hurdles parents of children with autism have to clear. It is hard and when one person gets too far off the same page, it can feel overwhelmingly insurmountable. The key is constant communication and a whole lot of empathy and patience for your spouse and what he or she is experiencing. Also make room for me-time and date nights or you will lose yourself in the struggle.
Q. Autism Speaks recently sent me a press release listing things we didn’t know about autism just one year ago. They said that after age 4, many nonverbal children with autism develop the ability to use spoken language. As a board member for the organization, why do you feel it is important for people to know this?
A. That’s great to know but my personal concern is for those children who never become verbal. You cannot imagine the heartbreak a parent endures to never hear the words “Hi, Mommy” or “I Love You.”
At HollyRod, we have a “Give the Gift of Voice” program where we donate tablets with communication apps to non-verbal children to help them communicate. It’s simply awesome. We have a new partner FUHU (they make the popular Nabi tablet) who is helping us get more tablets in the hands of these kids. They are also helping us develop a new HollyRod app and donating a million dollars to us to help us with our capital campaign for our Autism Compassionate Care Center where we will treat whole families affected by autism. The numbers are rising and they need help desperately.
Q. What’s the most important parenting lesson you’ve learned from raising a son with autism?
A. My son has taught me patience, acceptance, compassion, advocacy and pure love. As he says: “I may have autism, but autism doesn’t have me.”
Want to hear more from Holly? You had questions for her that you posted on our Facebook page and we answered them. Check back next week to read what she had to say!
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