Photo by Voelker Studio
Last week, I spoke to actress, author, activist, and philanthropist Holly Robinson Peete about her son RJ's autism diagnosis 10 years ago and her family's long journey to living with autism today.
Holly talks about how her family's priorities and focus on autism have shifted as RJ approaches age 13. The family of six is working inwardly to strengthen their own family bond and outwardly to share their experience and hope with other families struggling with autism. "We're approaching this from a family point of view," says Holly. "I think it's so important that parents stay hopeful, and we weren't very hopeful in the beginning."
Holly runs the nonprofit HollyRod Foundation, founded in 1996 during her father’s battle with Parkinson’s Disease, to help improve the quality of life of people plagued by a disease or disorder. After Holly’s son, RJ, was diagnosed with autism at age 3, hollyrod4kids was formed to focus on improving children's lives too. Holly has become an advocate and activist for autism education, outreach, and support.
Holly and her husband Rodney Peete, who was a quarterback in the NFL for 16 seasons, have four children: fraternal twins, son Rodney "RJ" and daughter Ryan, both age 12; son Robinson, age 7; and son Roman, age 5. They live in the Los Angeles area. Holly is currently appearing on Celebrity Apprentice and blogging for the The Huffington Post.
How old was RJ when you first suspected he might have autism? What were those initial signs?
We saw RJ's behavior change dramatically at 2 -- no more eye contact, he wasn't communicating. He'd started to say his first words. Those stopped. He wasn't connecting with his twin sister, and he wasn't responding to his name.
There was about a year from the time we saw this change and the time we actually got the diagnosis. That was a very stressful year. The doctors said he was fine. There's nothing wrong with him. He's a boy. He'll be fine. He'll grow out of it. All that stuff.
It'd be one thing if that's how he was from the beginning, but we were seeing him do things and look at us in the eye -- and when that stops all of a sudden, how is everything fine? So it was a difficult journey for us at that point.
In those first moments when you found out RJ's diagnosis, how did you react? And how did that reaction change over time?
RJ was diagnosed when he was 3 years old. It was a difficult time. You go from having this boy with light in his eyes and that light goes out and you're like, What just happened? And you don't know how to respond. You start trying to ask all these questions. Okay, he has what? What is it? You have a developmental pediatrician who gets all clinical: "Well, autism is brain disorder..." You're sitting there just completely naked. We sat there and listened to this laundry list of things [our son] would never do. It was a daunting moment for us. [My husband and I] both were in this "make it go away denial" kind of thing.
I quickly focused on, You need to get out of that and roll up your sleeves and go to work, and the earlier the better. And I was already, mind you, a little miffed because I missed a whole year of intervention with the doctors lolly-gagging and not listening to what I knew in my heart. There was a mixture of despair and relief because at least I knew I wasn't wrong. I knew there was something and to have a name to put to it, I think there was a little bit of a relief. But that didn't last long. We've been on a journey. This didn't happen yesterday. It happened 10 years ago, so what RJ was like at 3 and 4, he's totally different now. He's about to be 13.
So we've gone through peaks and valleys, ups and downs, really really high highs and really really low lows, and it's been an exciting yet difficult journey for us. I want to say "positive" because I think it's so important that parents stay hopeful, and we weren't very hopeful in the beginning. As we started to chip our way through this, we had some moments of hope and positive things happened that sustained us through this journey. Again, with the diagnosis, we were given this list of nevers, and that list of nevers was very hard to navigate. They didn't give us a whole lot of hope.
As time moved on, there was a lot of acceptance and coming out of denial from my husband's side, and that had an impact on us. There's my daughter, RJ's twin sister, poor thing -- all her play dates were ruined and she always had to leave birthday parties cause her brother was crying too much. She always got the short end of the stick, yet she never complained. So we had a lot of little hurdles, but in the middle of those hurdles, there were these nice small victories and little wins that made us feel like we were making progress and that everything was going to be okay.
I think that's what most families with autism deal with. You have to change your expectations for who you thought you were going to have for a son. That's difficult. It's difficult for anybody. It was especially difficult for my husband. Dads process things a little differently. All he heard was someone stomping on his dreams. Readjusting those expectations of his boy was a difficult ride and certainly wasn't going to happen overnight. It didn't. It took a while. And it caused a lot of friction between us because I was already on the warpath, and he was just lagging behind like, It'll go away. I can fix it.
Then that was dragging me down. We had a few "come to Jesus" moments where it was like, Okay, look, you have to get on board or get gone. It was really down to that, and I certainly didn't want him to leave because I didn't want to be a single mom dealing with this. But in the end, it was that ultimatum and some revelation that he came to on his own. Fortunately, the timing worked out where we were able to figure it all out, get on the same page, and move forward together. But in the early days, it was rough going.
When that light went out, we were fighting to get that light turned back on. You want to accept the child, but you feel like if you accept it, then does that mean I'm not fighting to get him better or to equip him with more tools to become functional in this crazy, neurotypical world we live in? There were a lot of very interesting forks in the road that we'd come up to, and often [my husband] would want to go left and I'd want to go right, so that was challenging. But I guess in the end we were really blessed to be able to pull it all together because a lot of marriages don't survive.
What is RJ's exact diagnosis?
High-Functioning Autistic Spectrum Disorder. Actually at the time, the doctor said it was High Functioning but then she adjusted it to Mid to High. We didn't know what that meant. That sounded like gibberish to us. Giving us words that we were unfamiliar with...it was such a process. Ultimately, they just give you this blanket: "He has Autistic Spectrum Disorder." They said he had Sensory Processing issues and may be a little OCD. They gave us a whole list of stuff that we had to digest.
Holly with RJ and Ryan
Photo by Voelker StudioAnd what does that diagnosis mean in laymen terms?
When he was little, he was nonverbal, so he couldn't talk. He wasn't able to express himself on so many levels. So that was probably the most noticeable thing. He was disconnected. He wouldn't make eye contact with you. Another little kid would walk up and want to play with him, and he wasn't able to do that. If he was playing Legos and another kid grabbed his Legos, he wouldn't say anything even though they were his, whereas a typical kid would say, "Give me that back!" He wouldn't do any of that. It was like, Where are you? He was just not there. He wasn't present, at least to us, on the outside.
Now I've since learned that children with autism are very present. They know exactly what's going on around them and their inability to properly process all the sensory issues and express verbally is askew. For the most part, they're very aware of what's happening around them, and it's frustrating for them to feel something and not be able to say it.
We as a community have learned so much from people like Carly Fleischmann who's an autism activist. She's a teenager, and she has autism. She's nonverbal, and I've gotten to be very friendly with her. She keys everything on a little mini computer, and she tells what it feels like to be inside her body. We'll be sitting there, and I don't even think she's connecting with me. She's rocking back and forth. She's kind of grunting and making noises, and you don't even feel like she's there, and next thing you know, she keys, "Holly, I totally love that purse" or "Your son RJ's really cute" or "I'm so glad that we got a chance to be together." So you know that they're there. She's taught me so much. [Many kids with autism] are completely present. They just have a completely different wiring and sensitivity to the world around them. And so it's really up to us in a lot of ways, as we try to get them out of their world that we start thinking about coming into theirs.
What are three things you wish someone would've told you about autism that you had to learn on your own?
1. If children aren't connecting verbally, they are inside. They know what's going on around them. I would've been more aware of the things I said about my son in front of other people and just been more conscientious of his presence. He'd be over in the corner by himself lining up toys or twirling around in circles, and people would ask, "What's he doing?" I'd learn different language like, "He needs that to stimulate himself. That calms him down." Not just saying, "He has autism so he spins." He [could hear] me saying that and make the connection, "Mom really gets why I'm doing this." I would have been way more conscientious about language growing up if I had to do this again.
2. I'd probably take my time for myself, not be so scared to leave him with people. I'd take more time with my husband. I'd value more what my husband's fears and worries were.
I was just so busy focusing on this boy that I was like, I can't deal with you. I can't coddle you and deal with him. I would've stopped and said, "Okay, honey, let me listen to how you're processing this, and I know you're different and I'm different." There was a Mars/Venus moment. I feel like I could've had more of those. When I read his book, I come off like such a bitch, but I was doing everything that I had in my power at that moment. If I had to do it over again, I'd definitely cut him way more slack. Be way more conscious of what he was going through.
I was sending him books on top of books. He was playing football, and I'd go to the football city and I'd find the books unopened, under the bed in a package, never even bent, not even a page dog-eared. I went through those books painstakingly highlighting, dog-earing pages, trying to give him the CliffsNotes, and he didn't even open the box. So he was definitely trying to will it away. I think he thought if he read those books, it'd make it a reality, and he didn't want to deal with that. I get now why he was in that denial, but it just wasn't moving us forward.
3. I also wish I had known how expensive it was. Yes, with the disclaimer that Rodney and I have nice-paying jobs and we're not, as far as income, a typical American family, and we were blessed to be able to afford it. But we felt it. So we know families that are dealing with unemployment and this recession get hit extra-hard, but I think I would've have financially planned differently had I a better idea of what this was going to cost. And even if you have [money], you still argue about how you allocate these funds for therapies. It's excruciatingly unaffordable. Again, we were blessed to be able to come up with the dough, but in the end, we felt it and can't even imagine what it must be like for families that go paycheck to paycheck and try to afford to treat their kid as well.
It's therapies, it's special schools, if you're in a public school, sometimes you need to hire an advocate to help fight the system, IEPs. There are so many costs attached. And then you have childcare and you have to think about your other children and what they need to be doing and try to get them into activities so they're not just sitting in the waiting room of a therapist's office. There are so many angles.
If you have your kid on a special diet (and by special I mean if there's something he has a sensitivity to), you want to omit that. That worked very well for us. Our son had a gluten sensitivity. He tested off the charts for wheat. I had never even heard of a wheat allergy and this was long before any celebrity came out talking about special diets. We were dealing with this long before that. We did a workup on our boy, and he was allergic to wheat. Wheat is in everything! We found it extremely helpful to wean him off of that.
I remember talking about it once to a magazine, and I remember reading one of the comments, "Oh, you and your celebrity fad diets that don't work." Fad diets! This isn't like a diet to lose weight -- we were omitting something from his diet that he has a sensitivity to. We found that it works for him.
Now he's semi-gluten-free. He's built a tolerance to it over the years, so we've worked it back into his diet a little bit. We don't overdo it. We have two other little guys, so we started them off in the gluten-free world so we could all eat the same kind of pizza. When we go shopping, I gotta go to three stores and online. You can't just get gluten-free stuff. You gotta find the stuff that tastes good. Ten years ago, you'd be surprised how little stuff was there that tasted good. Now there are a lot of really delicious brands that have fought hard to makes some of these things taste better. That also goes to how unaffordable it can be. You can't get that food at Costco. In your family budget, you gotta work that in.
What or who has been your greatest resource for information and support during this time?
There's a lady named Sharon. She was the very first person who made me feel like it was going to be okay back in 2000.
Sharon runs a school called Smart Start, and it's a preschool that they recommended we put our son in. He was in a mainstream school at the time, and it was painful to make that transition. When I walked in that room, I sat down and cried, and I told her I didn't know what to do. And she was the first person who said, "You know what? You're going to survive this and actually there may be a day that you look up and say, 'This is a blessing.'"
I said, "Yeah right, lady. There's no way I'm ever going to do that."
But we've had those moments many times. There are tremendous challenges. We've all read about those, but I do feel like there's some unbelievable joys. When you see their breakthroughs and progress, it's a beautiful moment. I love that. We love who this kid is, and we wouldn't change a thing at this point. Sure, we want him to be happy and we want people to be more tolerant, but he's such a special, amazing, unique kid that we'll take the issues and the hurdles any day.
Peete family in Mexico
What's been the most challenging part of dealing with a child with autism?
The biggest challenge has been trying to get other people to accept my son, trying to get other people to understand who he is, and this community supports him -- my best friend, my family, my mom, all the people who really get a good Team RJ going.
My biggest challenges surround my fear of what happens when I'm not here. Who's gonna watch out for this guy? Who's going to protect his heart? We all have that fear. Your kid doesn't have to have autism, but when you're told he'll never live on his own and he'll have to go to a group home ... they told us stuff like that at 3 years old. That's the biggest challenge for me. Knowing that I've got X amount of time to try to prepare him to have a meaningful life.
Another challenge is to get my other kids to rally around him and to have them all bonded together as siblings so they can look out for each other. I'll be honest; that's part of the reason we went on and had two more kids because I want to build this group of people around RJ -- family that can love him and help him navigate through life. His sister is the most amazing advocate for him. His little brothers, they're a little annoying to him right now, but I know they're going to look out for him. It's very important. That's peace of mind for me and Rodney.
I feel this giant clock ticking in my head, and I just have to relax and not be so uptight about it, but there are moments when I'm like: Am I doing enough? Teaching him enough? What doesn't he know? I don't have any time or patience for things that I feel like he's not going to use. I'm struggling with fractions and I'll tell him, "Honey, don't worry about it. You need to focus on just making change at the grocery store." It's living skills that we're trying to focus on. He's not going to be a mathematician -- although some kids on the spectrum have that ability.
Tell us something that makes RJ special or unique.
He's absolutely amazing with sports trivia. He can tell you every single baseball player in the MLB, what team they're on. He can tell you the name of every single stadium, the managers. He's actually on a little TV show now. It's called Kid Pitch that's on Fox Sports Net, basically an ESPN-type of baseball show for kids, from the kids' point of view, and Tom Arnold hosts it. And there's a segment on there called Stump Rodney. Basically Tom sits there and if the subject is baseball managers, [RJ] will just bust them out. It's done in a very cute way.
We were nervous to let him go on TV because we didn't know how he'd interact with some of the other kids, and they've been amazing, embracing him, and I just think it's important that people see how uniquely gifted these children are. He's totally enjoying it, so that's the most important thing.
It comes on Sunday mornings real early, and we're so proud of him. It's a chance to show off his gift. It knocks down some of the stereotypes and makes these kids a little bit cooler than they're seen and often portrayed in the media and in social circles. RJ seems to be enjoying it . We're going to ride that wave as long as he's having fun.
See an episode of Kid Pitch (the Stump Rodney segment is around 13:13).
Finally ... the debate around the cause(s) of autism is very heated right now. What do you think causes autism?
In our minds, he certainly wasn't born this way because he was hitting all his milestones alongside his twin sister, and then it just sort of happened to him. I think the reason a lot of parents think that there's any connection [to vaccinations] is because around the time autism presents itself, in a lot of cases, not all, is around the time there's certain shots associated with this checkup. So do I know what caused our son's autism? I haven't a clue. But I do know that I became fearful after the experiences we had and his responses to these vaccines.
I'd never tell any parent to not get their kid vaccinated. It's a personal decision between you and your doctor. It's important that you get all the research and look at your child's specific physiology and figure that out. I do feel that in some cases, in our case especially, that there was a toxic overload for RJ that specific day. Now did that trigger his autism, did that bring it on? I swear, I just don't know. I'm not a scientist. I don't know.
There was a time when RJ was younger where I was really caught up in that and very angry about it, not getting the answers that I needed. But look, he's about to be 13, and now we're dealing with puberty so our priorities shift. Our goal is to get him through this, to get him to adulthood, so we don't quite expend as much energy on that argument. And that's one of the reasons why I wrote that blog entry Shifting Focus: 8 Facts About Autism the Media Is Not Covering because I wanted to shift the conversation a little bit. At this point, all I would love to do is shine a light on some things that happened within the span of a person with autism's life. We don't ever have the conversation of what's going to become of these more than half a million children who are going to become adults with autism in 10 years. We don't even talk about that. So I'm just going to use the opportunity to talk to you and other people about some of these lesser headline-grabbing issues.
But yeah, if I'm being honest, there was certainly a moment when I was very concerned. I was really upset and a little consumed. But he's grown up now, and our priorities are shifting. You have to save up your energy for the challenges that are ahead. At least in our case, we had to move forward and be focused on other issues. A lot of families responded to that blog post in a positive way. Like, wow, we haven't seen a blog like this because we're so bogged down in this other debate. So people were very receptive. I didn't write it for that reason. I wrote it because I really became concerned with some of these other issues.
You and your daughter co-wrote a book about the sibling experience, and your husband wrote a book about his experience coming to terms with RJ's autism. Why and how did these books come to be?
Better World Books; $11.48Talking specifically about My Brother Charlie, my daughter [Ryan] was just such a great advocate for her brother. She co-wrote this book because she really wants people to understand what siblings deal with and wants to advocate how beautifully unique her brother is. I'm very proud of her.
I'm also proud of Rodney. We're approaching this from a family point of view. Let's talk to the children and dads, you need to have this conversation -- because basically when we were getting our diagnosis, we found a lot of holes at the bookstore. We couldn't find anything for dads specifically. We couldn't find anything for children to explain what it was.
I went to the store (I'll never forget) looking specifically for a book for Rodney that he would actually want to read. I guarantee you if some football player had written some book called Not My Boy! and I went and got it after we just got this diagnosis, he would've read that baby. All those other books that were under that bed, he didn't touch. All those clinical books, he couldn't even go there. But another guy saying, Hey look, it's okay to feel this way and, yeah, I dealt with these thoughts.
That's really what we thought about when Rodney decided he was going to write this. Same with Ryan. I was looking for a book to help explain to her what was going on with her brother. There were some smaller press books, but nothing Scholastic would ever have. So to be associated with that company and getting out this message in a mainstream way is just a blessing for us.