Shonda Schilling, the Mamas, and Asperger’s

We recently had the opportunity to talk with Shonda Schilling, wife of baseball great Curt Schilling, about her new book, The Best Kind of Different: Our Family’s Journey with Asperger’s Syndrome. In it she talks about life with her 10-year-old son, Grant, who was diagnosed with Asperger’s three years ago. We knew that this mama would have something valuable to share with all of us about the disorder that affects so many children throughout the world.

We asked Shonda what made her decide to open up and share her story now. One day, she said, she was at a kids’ baseball draft and there was a particular child who nobody wanted and who didn’t get picked. He was different and it turned out he had Asperger’s syndrome. Shonda understood the pain he was feeling and realized at that moment, “Oh my God, that’s how people see my kid.”

She decided then and there to reach out to the world to explain what Asperger’s is and how it affects a child and a family. She really wanted to shine a light on the subject in the hopes that it would ultimately help people to understand and accept her child and all the others who suffered with the disorder.

MAMAS: First of all, congratulations on your new book! We understand that it’s doing really well.

SHONDA: Oh, thank you so much. Yes, actually I’ve been surprised by how well it’s doing.

MAMAS: Tell us a little bit about Grant, Shonda. We know he has ADHD and Asperger’s, but those things don’t define him. What’s he like?

SHONDA: Well, he gets up every morning, does things that interest him, wears the clothes that he wants to wear, and he’s not afraid about what people are going to think about him. When he talks to a person, he talks directly to them. He’s not telling you what you want to hear, he’s telling you what he really thinks. So his relationships are true.

His biggest issue is that when he does talk to you, he doesn’t understand the social implications of what he’s saying. So he has a hard time knowing when it’s time to be quiet, or when it’s time to listen. So sometimes it kind of looks like he’s overrunning the conversation. And we all remember those kids we knew when we were younger who used to do that, and we thought they were strange.

He also acts like he’s a couple years younger than other kids his age. But these are all things that he can learn, and he is learning how to interact socially, in a more appropriate way.

He doesn’t really know how to lie, either. We call his style “brutally unfiltered honesty.” So if you’re looking at him and asking him if he likes your outfit, you better be ready for the answer.

MAMAS: But in a way, it’s kind of refreshing because you always know where you stand with him.

SHONDA: Absolutely. And instead of saying “Oh my gosh, he’s different! How will I teach him to be like everyone else?” I think, “If I acted the way that he does, I’d be a better person.” He’s real with people, and he’s honest with people, and I love that. You see the impact of something as simple as kindness and honestly on people, and it makes you want to be more like that.

MAMAS: Most kids with Asperger’s have one special interest, or one subject that they really like. What is Grant’s?

SHONDA: Sea life. He is a marine biologist in the works. He knows more about Beluga whales than any other child.

MAMAS: That’s so amazing, and what a broad world for him to explore. Are you going to let him learn how to Scuba Dive?

SHONDA: He’s not old enough yet, but yes, definitely. He would love that.

MAMAS: Grant wasn’t diagnosed until he was 7. What was the tipping point for you in getting some clarity about what was going on? Were there behaviors you noticed in him that were different from the ones that you had seen in your other kids–ones that didn’t fit with ADHD? [All four of Curt and Shonda’s children have ADHD.]

SHONDA: I think a lot of kids aren’t diagnosed until later. I think as parents, we kind of see the behaviors and think “Oh, it might be this, it might be that,” and we find reasons to explain it.

But at some level, I knew there was something different, and I kept calling Curt and saying, “I feel it in my bones. There’s something different. He’s just not reacting the way a typical child reacts.” That was sort of the way I knew he was different. For example, my younger son was more mature than Grant. With my younger son, if we were walking through a parking lot, I knew he would stay close to me. But with Grant, I never knew if something would catch his eye and he would run off. So I always felt like I had to keep a hand on him.

MAMAS: How were these behaviors different from things that you would have normally seen with your other kids who had ADHD? Were the behaviors just more extreme versions of the same thing, or were they out-of-the-box all together?

SHONDA: Out-of-the-box, because ADHD is more impulsive behavior. This behavior was him getting locked-in on something. There’s a difference between being impulsive and being locked-in.

MAMAS: You’ve talked about how you went through a mourning period when Grant was diagnosed. Emotionally, what did that feel like for you? Was it like a grief reaction?

SHONDA: I never experienced the grief that goes along with the loss of a child, but it certainly was a grief about losing the child that I had dreamed of him being. And it was hard because I realized that the things I had thought I could give him as a mother weren’t necessarily there anymore. It was going to be a whole different thing.

MAMAS: How did the diagnosis affect you emotionally? How did you cope?

SHONDA: Well, when we got the diagnosis, we were right in the middle of the World Series…It took me a while…It wasn’t until I realized that I needed to get help and reach out and take care of myself that things started to change.

I think for a lot of people when something happens in their family they have to work through it on their own first. I mean, it’s different for everybody. Some people wake up the next day and can reach out, and for other people, they need to take it one day at a time.

MAMAS: That’s true, and some people can’t go there at all for a while.

SHONDA: Yeah, and I think that’s important for people to understand. There’s no timeline that you have to follow, you have to do what’s right for you.

MAMAS: After he was diagnosed, your world must have felt like it was turned upside-down. How did you get back on track? What was the first thing you did to create a new sense of “normal” for your family?

SHONDA: I think education was key, and I also reached out to another mother who I was referred to through the director of the program we were working with. I had her number, but I didn’t call her for three months. I was so afraid that if I reached out, would the response be about me, or about my husband, who had just won the World Series?

And I needed to be treated like a mother. I needed to be understood like a mother. And you know, I wish I had done it months earlier, because that’s what really made the difference.

MAMAS: And people don’t understand that when you face a situation like this, if there’s any kind of celebrity status surrounding you or your family, you can end up feeling even more isolated.

SHONDA: Yes, I felt isolated because of my son’s behavior, and also isolated because of who I was.

MAMAS: How did you break the news to Grant and the rest of your family? Any second thoughts on how you might have done it differently?

SHONDA: Well, we told the older kids first, and they were fine. They cried, but now it all made sense to them. Grant just kind of laughed at me. He said, “It’s just who I am.” It’s kind of funny because in my house, my youngest one is dyslexic, and they kind of tease each other and call each other names. Like one of them will say “So what! You’re dyslexic,” and the other will say “So what! You have Aspergers!”

MAMAS: That’s kind of funny! And it seems like it doesn’t really matter that much to them.

SHONDA: No, it really doesn’t. But some people are really afraid, and they don’t tell their family members that their kid has Asperger’s because they don’t want to label him. But I didn’t see it as labeling him, I saw it as a way for him to be understood.

MAMAS: There’s a difference between labeling and naming. Labeling makes you feel boxed in, but naming something can liberate you and lead you to think, “Oh, now I get it!” It’s a whole different feeling that actually frees you, and then you can start to understand it and come to a place of peace about it.

SHONDA: Yeah, and that’s why one of the first things we wanted to do was to put it in his school record. But people said, “Then he’ll be labeled.” And we said, “Well if they don’t know, how will they be able to help him?”

The kids should be proud of who they are. I mean, it’s who he is. You can’t change it, you can’t medicate it, it’s just who he is. It’s like my son with dyslexia. People don’t have a problem saying, “He’s dyslexic,” because they know that just because he can’t read doesn’t mean he can’t learn how to read. And so Grant will have to learn how to do some things differently, but it doesn’t mean he won’t grow up and get married and have kids.

MAMAS: We were talking yesterday about some of the adults we know who we realize have undiagnosed Asperger’s. And they have obviously gone on to have really successful lives, even without the benefit of a diagnosis in childhood and access to the techniques and strategies that could have helped them when they were younger.

SHONDA: Yeah, that’s hard. And you know the sad part of it is that there are people who didn’t have any support, and were sort of pushed to the side.

MAMAS: How has day-to-day life changed since you found out about Grant’s Asperger’s?

SHONDA: Well there’s no yelling; all the yelling stopped, and that’s made a big difference. And we’re having to deal with the flexibility issue — we’re trying to teach him to be flexible. So I have to be more flexible in my own life.

MAMAS: How has knowing about Grant’s Asperger’s changed your parenting style? Are there strategies or techniques that you have found to be particularly helpful?

SHONDA: Um, it’s deep breaths mostly, and not being so rigid about the way things are supposed to be.

MAMAS: And how about parenting your other kids? We read in another article that your kids have learned a lot about empathy from dealing with this. Is that true?

SHONDA: Yes, because they’re around it. I can give an example with my daughter: She was in a school play, and another kid who was in the play had Asperger’s, and he had missed his line and he got stuck and really upset. And you know, she was the only one that could give him the space that would allow him to come up with it. It was such a gift to him because she was able to help him in such a completely different way. She could really help him to calm down.

MAMAS: That’s so amazing, you must have been so proud of her!

SHONDA: Oh yeah! She can’t do it at home, but…

MAMAS: Yeah, but isn’t that always the case with all kids? They’re great at washing the dishes at somebody else’s house but they never want to do them at home.

Looking back, were there any red flags that you realize you might have missed regarding Grant’s condition? Anything you wish you could go back and do differently?

SHONDA: Oh, absolutely. And there’s a guilt there, too. You know, like being out of patience with him when he had no idea why we were mad at him all the time. It’s something I have to work through every day. And I think that’s why I’m able to have more patience with him now.

I think that’s something that comes up with [Asperger’s] people who are older, who didn’t get diagnosed — they just felt so alone, and they’re angry about how they were disciplined for their behavior.

MAMAS: That’s true. And discipline was used very differently in those days.

Is there any advice you would give to other moms who have recently been given the same diagnosis for one of their children? Any words of wisdom for them?

SHONDA: That no matter what the diagnosis is, you’re going to be okay.

MAMAS: So Grant’s in 4th grade now, right?

SHONDA: Going into 5th grade. I’ve got one more year before things change again.

MAMAS: And he’s still in regular ed? He’s still mainstreamed?

SHONDA: Yes.

MAMAS: Will that change when he goes to middle school?

SHONDA: No, we’re going to keep him mainstreamed as long as we can. And he may be able to go through high school like that, we don’t know. Again, we’re just going with being flexible and keep learning to change.

MAMAS: That’s something we all need to do.

SHONDA: As long as you’re looking for the good instead of the negative — that’s so much of what we have to learn in life.

MAMAS: Well, thank you so much Shonda, you’ve told us a lot and taught us a lot.

SHONDA: You’re welcome. You know, the best part of this is that it gets people talking, and that’s great because that’s how my son will be accepted.

MAMAS: And many other kids too! You might not realize it, but you’re putting a light of understanding on Asperger’s for lots of families, which is so important. Thanks again, Shonda and good luck to you and your family.

FOR MORE INFORMATION ON ASPERGER’S SYNDROME VISIT: www.aspergersyndrome.org

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Ellen and Rachel are two old friends and “expert” mamas—one a pediatrician and one a family therapist—with fifty years of parenting experience between them.


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