I was thrilled to join the chat, because My Brother Charlie is a book that needs talking about. It's a book our community has needed for a long, long time, and one that will hopefully give other people -- and their impressionable, open-minded children -- insights not only into what autism is like, but how truly special and loved people with autism can be.
Holly wrote My Brother Charlie with her daughter Ryan, whose twin brother RJ, has autism. Long time readers know that I am an advocate for literary activism, so I appreciated talking with Holly about her book that not only promotes autism acceptance, but donates a portion of its proceeds (to the HollyRod4Kids Foundation, to help kids like RJ and Leelo).
Holly has serious plans for My Brother Charlie:
"...our biggest goal is to make sure that you know when you walk into a classroom, not only do you see the “No, David!” books, but you see “My Brother Charlie” sitting right next to it. And I think you know that’s going to be a difficult path, but I think we can get there."It was an hour long, eye-opening, and cherished conversation, I wish I could share it all but that post would be far too long. (Plus we were sworn to secrecy on a couple of points.) The other interview participants were:
- Jennifer from 5MinutesForMom.com
- Fred from MochaDad.com
- Melanie from SavvyAuntie.com
- Ramesh, bringing the Dad's perspective to MommyNiri.com
- and Abigail from BlackCelebKids.com
Melanie asked about the book's role in helping families whose kids may have autism:
HRP: It is our hope that when families are able to read this book and in the back of their minds know there’s something going on, that they read [My Brother Charlie], it will give them hope and a little less fear to talk about autism and what may be happening with their families. So I hope that it will help get people out of denial.
Melanie asked what "aunties" and friends can do to help kids with special needs and their parents:
HRP: Just take those kids and give the family a night out. That is the biggest thing, that is so underrated. When an auntie says you know what, I’m going to take your kids to the movies or they’re going to come to my house or I’m coming to your house; you and your husband go out, or just you go out if you’re a single mom.
Childcare is huge, because so many of us with special needs kids are very uncomfortable leaving our children with just anybody. And an auntie is a perfect person that can give us peace of mind. We can go out. We can just have some me time, because that’s what parents need.
I asked how much input her co-author and daughter Ryan had, and how Ryan brought her experience to the process:
And she said, "You know, I think they don’t understand what autism is and I think we need to come down to school as a family and have this conversation," so that’s exactly what we did. We went down to a fourth grade class. My husband’s played in Super Bowls, I’ve spoken in front of lots of people, but nothing was scarier than sitting in front of fifty fourth-graders, just having this conversation.
But basically, we said to them, "Autism is something that makes your brain a little bit different, but it doesn't mean that you don't need friends, that you don’t need people to understand who you are." And then we talked about strengths and weaknesses. We asked them what theirs were, and one kid said I’m great at soccer, but I suck at math. And another kid said I’m great at math, but I’m terrible at football."
And then we said, "Well, our kid can tell you the name of every single American President, one to 44, if you just give him a number. He can tell you the name of every single player in the Major League Baseball; every single umpire’s name, practically. He is a wiz in sports; if you just ask him these questions he can tell you that; however, he’s terrible at making friends." It made such a difference.
So that was really the basis of the book. We though, "If we talk about how Charlie has these strengths and then focus on the things he can do great, then I think that’ll take the scariness away from autism and promote autism acceptance."
But it was all Ryan and she had a lot to do with making this book. The two of us, we sat down, we talked about our goals and our objectives, and we wanted to make sure that we were able to connect with children and help them understand what autism is and help them be more accepting of it.
Ramesh talked about how his daughter with autism read My Brother Charlie and said, "This boy is just like me."
HRP: Oh, wow. Oh, my God -- that gives me the chills. That was what we wanted to do. We wanted kids to be able to identify with these children and see themselves portrayed as, I don’t want to say heroes, but as the protagonist in a mainstream book.
Ramesh then asked how long it took Holly and her family to publicly acknowledge that RJ has autism:
HRP: We took a long time. It took us about six years to be able to talk about it publicly. It was a difficult conversation for our family. My husband didn’t want to pull [RJ] out as the poster child for autism. We were concerned about how labeling him in the media might affect him.
We didn’t keep [RJ's autism] a secret, our family circle knew and people knew, but we didn’t make a big deal out of it. But really, it was something random that made us decide that [public acknowledgment] was something we needed to do. We were out at an amusement park and a family walked up to us and said, "we know who you are and we had heard through the grapevine, and thank you so much for talking about it because it’s really helped us." And we realized that if we talked about it even more that we might be able to effect change.
Ramesh also asked how RJ was taking the publication of My Brother Charlie:
HRP: The perfect example is, we were in Philadelphia at an amazing museum called Please Touch Museum a couple weeks ago. And we shut down the whole place for just families and their kids with autism. And it was so amazing and families didn’t have to worry about their children touching things. They could just be free.
We read the book and at one point a kid walked up to RJ and said hey, Charlie, and started calling him Charlie. And [RJ] said, “I’m not Charlie, I’m RJ, but Charlie’s a cool kid, isn’t he?” And so he really does get that he’s helping to put this message forward. He’s almost 13 and I’m loving that he really does get how important this is to have this conversation.
Because basically, he became a rock star in his classroom after we started talking about his strengths and kids started looking beyond his weaknesses. And I think all it takes is just to have more conversations like that.
I asked if her family had ever encountered people who treated RJ with less than compassion, and asked what she has done in those situations:
HRP: Well, of course we have. Every single parent who has a child over the age of three or four, certainly school age that is on the spectrum has experienced some, whether it’s at school or whether you’re in the supermarket and your kid goes flat on his back in the aisle and someone walks past you and either verbalizes or gives you that look like why can’t you control your kid?
So we’ve all experienced that and I certainly have, especially on airplanes. That’s always fun, the airplanes, because he’s so much better now, but boy, when he was three, four, and five, his favorite thing was to keep pushing the call button for the flight attendant. And if he couldn’t do it, he would kick the seat in front of him, so it was one or the other. And so (we used) to have to try to disable the call button. People got so angry and really just you know you know how people are on planes with just typical kids. So this was rough.
And I usually try to say to people you know what? He has autism and I just want to tell you that that makes it so he cannot help his behavior. So I can’t yell at him or spank his butt to make him stop. So you just rely on the basic compassion of other human beings. And oftentimes that’s not enough. But I feel like I can educate people one person at a time and hope that there’s an each-one-reach-one mentality that happens.
But that’s one of the reasons why we did write the book. We really, really wanted to get this word out about autism being not so scary.
HRP wanted to add that she's been getting some feedback saying that this is a book about a boy who makes progress, people saying that not all kids with autism will do that:
HRP: [RJ's] made a lot of progress, yes; and we’re blessed because we were told he wouldn’t be verbal and we were told he wouldn't do a lot of things. There’s a moment in “My Brother Charlie” where [Charlie] says I love you and many families will never hear their daughter or son say that. I do think about them and we spend a lot of time with teenagers that basically use machines to talk and I’ve found them to be amazing people, so just giving a shout out to those families as well.
Jennifer asked what was it like working with Ryan on the book:
HRP: It was a tremendous bonding experience for my daughter and myself. We had the best time and she’s so proud. It’s very interesting watching her blossom into this amazing writer and this really great sister. I mean she’s this unbelievable advocate for her brother. And now she’s going to start blogging and having chat rooms with other siblings.
And you know I talked earlier about how we went to the Please Touch Museum with all those families with autism, and they were calling RJ Charlie and he was eating it up? But with Ryan, sisters and brothers were walking up and going guess what? I’m a twin sister and my brother has autism, too. I mean they were proud of it and to connect with another young lady who’s experiencing and verbalizing what they go through.
You don’t hear enough about what siblings have to deal with; ruined play dates, vacations cut short, terrible airplane flights, you can’t stay in the movies or restaurants too long. And these things can take their toll on siblings and I have spoken to many adult siblings of children with special needs and they’ve experienced that, too.
So writing with her was amazing, but I have to say the best part is now, seeing the connection and how people are responding to the book and being very comfortable with approaching her, and her just getting that she’s doing a service.
I'll leave you with Leelo's little sister Mali's review of My Brother Charlie:
Holly is graciously offering an autographed copy of My Brother Charlie to my readers. To join the book-seeking fray, please visit my review site.
Photo of RJ, Ryan, and Holly Robinson Peete (c) Chris Voelker, VoelkerStudio.com