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Raising a Child With Asperger's Syndrome

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Headlined to H3 8/20/10

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To many women, being the wife of an All-Star major league pitcher may seem like a dream existence.

Behind her celebrity husband's glamorous network TV appearances on the diamond and the sports page headlines, though, a baseball wife must grapple with raising a family alone for a good part of the year when her husband is away on the road, no easy task under normal circumstances, and a daunting one for a family that had to move 40 times because of spring training and trades to five different ball clubs. And if the wife is also battling skin cancer and has one child with Asperger's Syndrome, and another with anorexia, she is apt to write a book about her trials as Shonda Schilling has done, titled, "The Best Kind of Different: Our Family's Journey with Asperger's Syndrome( HarperCollins)."

Fortunately, Shonda was a journalism major at Towson State College, Maryland, and knows how to tell a difficult story.

Shonda is the wife of Curt Schilling---a dominating hurler for two decades for the Philadelphia Phillies and Boston Red Sox, among other contenders, and a man who struck out a phenomenal 3,116 batters while compiling an enviable 216-146 won-lost record over nearly 20 years in the Big Time, collecting three World Series championship rings in the process for his performances in 2001, 2004, and 2007. With Curt away so much it wasn't always possible to be a typical family, Shonda writes. In an interview on Comcast on "Books of Our Time," produced by the Massachusetts School of Law at Andover, Shonda told law professor/TV host Holly Vietzke:

"I think that when you're married to somebody who's a professional or a celebrity, you're often thought of as never having to do anything. So I was always trying to live up to what people thought, to prove that I was doing it. And I was raising my own kids"at a cost of killing myself in the process." After a while, Shonda said, she stopped trying to change peoples' minds and determined "to live my life the way that I am, and true to who I am (and after the fourth child)..to get some help in there." Married in 1992, the Schillings have four children: Gehrig, 1995; Gabriella, 1997; Grant, 1999; and Garrison, 2002.

While she recognized that son Grant was different "in a way I'd never seen before," Shonda said, "I had no idea that anything such as Asperger's ever existed"I just kept chalking everything up to that he was the baby of the family." At times, Grant would not obey her in public and threw temper tantrums, causing passers-by to stare or offer advice, which Shonda regarded as humiliating. The Schillings did not know Grant had Asperger's until he was diagnosed with it at the age of seven. What followed in her family, she believes, could happen in any family. "There is no perfect family, and (it's best) to go with your instinct and just be kinder to people. I mean, knowing now what I know, if I see someone who's really struggling, the last thing I'm going to do is throw a look at them. I smile at them because it is humiliating, you know, and if someone would have thrown a smile at me, it would have meant everything in the world to me. Instead, I got all the unwanted advice about what I was doing wrong, and what kind of child he was and"that I was failing so miserably. But we just do really (have to) realize that there are all different kinds of kids in the world."

Shonda learned that the simplest change in routine---such as entering school by a different door---could provoke a crisis. On one occasion Grant began to cry because "I never have gone in the front door of the school and I don't know how to go in that way." Grant struggled repeatedly but could not make himself walk through the door but after 20 minutes, though, Shonda calmed him down and had him walk through the entrance when a teacher was present "and he was fine for the rest of the day" but "it was emotionally draining (for me)."

A child with Asperger's, Shonda says, does not think that other people have opinions that count. "He only thinks that he has an opinion, so if you're in a parking lot and he sees a dog he really wants to pet, his thinking is, "I want to go pet the dog, what's wrong with that?' Not safety, not anything"so I found myself always having to be a step ahead of him, often putting my hand on him rather than the younger one(Garrison), because the younger one got it." There were occasions, she continued, when Grant did not want to be at a baseball game when his father was pitching. "He didn't...care that I wanted to see the game. It was too much for him and he wanted out of there, so he would rock back and forth and stuff and say "I want to go', and loudly, and he didn't care who was around." Other fans would lean over and say, "Oh, you need to listen to your mother.' There's nothing worse than your child not being in your control and having to listen to other people's opinions," Shonda says. Some people suggested that if Shonda spanked Grant the misbehavior would stop. "But I knew in my heart that a spanking wasn't going to work." "It had gotten to the point," she continued, "when he was seven years old, that I knew if I put my hands on him, I might hurt him because he wasn't responding to me at all, and, in fact, he would give me a giggle that was almost like a slap in the face, like "You can't affect me.' It was his nervous way of trying to deal with my yelling."

Although outsiders tend to notice the acting out of Asperger children and complain of their anti-social behavior, they don't recognize the syndrome has some positive aspects, Shonda writes. "I think people need to recognize children with Asperger's are not doing anything by being malicious"that they're over-talking, over-talking"our first reaction is "this is really weird.'" Kids, though, don't see that the listener has had enough. They have this wealth of information and they want to get it to you. Nothing they do is to be mean but(for them) it's a deep conversation and they're saying it from the heart. They're not saying things you (necessarily) want to hear." Grant, for example, was obsessed with Naked Mole Rats, featured in the cartoon "Kim Possible," and spent hours finding every book in the library that mentioned them.

Shonda goes on to say, "I think one of the best qualities about my son is that he's not going to be influenced in the world by status or money because he doesn't really understand that. He's going to get into a career that he loves and be really good at it because he's in love with it and he's going to research it and he's going to have a wealth of knowledge." She adds, "He's going to have to be taught and understood, when it comes to social interactions and stuff like that but if you understand what kind of a person he is on the inside, you realize that it's really a gift that he gets to live like that." Asperger children learn better to socialize as they age and their maturity levels when they're twenty-five or thirty, Shonda says, are the same as their peers and their quirkiness does not stop them from getting married and raising families.

Shonda says her other children "were mad at Grant all the time. They'd say, "Why does he always get his own way and can do what he wants?' And one of the great lessons is that life isn't always fair"and so that's where I've seen my kids come a long way, to understand there's a lot of different kids out in the world, and there's a lot of different approaches and a lot of different ways to sit back and go, "Okay, well, I can let that go.' It's really not that important.'" Shonda said her children fought a lot until they came to that point and, being forced to handle the fighting with her husband away, she believed her own situation might be considered "not fair," either.

Far from attempting to hide Grant's condition from his teachers out of fear that it would label him, Shonda was open about it. "I think in a society that we are recognizing that there is so much different, that understanding it would be the best tool, and it would help my son to be the best person that he could be to be understood, and that the people in his classroom could help him by saying, "Grant, you're talking too much, you're in my space.' They need to go ahead and tell him and help him so that he would be learning lessons in school and in sports and in his everyday life."

Shonda says that Grant is "very proud of himself" to have overcome his problems and that the best feeling for her about the book "is that he has no reason to be ashamed. It's not a disease, it's the way his brain is wired, and he should not be treated any differently because of that. My youngest son has dyslexia, but we don't mind using that term. That doesn't mean my son isn't going to read. It just means that he has to learn a different way to reading. It doesn't mean that my son with Asperger's is not going to grow up and be a successful human being. It means that his route is going to be a little different than the typical route." For the most part, Shonda says, Asperger kids "are gifted in their minds, often very, very bright, and you think back when we were in school that these kids were just pushed to the side because they weren't understood or labeled "behavioral.' And so it's just really neat to know that people get them now and will be able to bring out the best in them and make them actually contribute to society. A lot of them grow up to be scientists because they are able to hyperfocus on things that they really enjoy."

Shonda learned to make use of the strategies that would help Grant adjust to an often tumultuous life. Her parents brought him to the baseball park to participate in what they hoped would be a celebration if the Red Sox swept the Colorado Rockies (Curt had won the second game 2-1) only in the eighth inning of the fourth game to avoid sensory overload on the seven-year-old. "He never cared about baseball, couldn't care less," the worried Mother said, thinking about the tumult that would erupt after the last out of a Red Sox victory, "so a World Series win is the last place you want to be." Ordinarly, loud noise and commotion would cause Grant to shut down. Shonda feared Grant "might go fetal" so she explained beforehand to him exactly what would happen, including the barrage of flashbulbs. As it turned out, "nobody was jumping higher than he was...he'll just remember that it was a fun family experience, being on the field and all the kids and parents, with everybody hugging and taking pictures"and there's Grant running back and forth in the outfield and he sees himself on the JumboTron"and he's having fun and that's what's important, and I took one of my first deep breaths, it was so overwhelming what my life is going to be like." Shonda added, "Just being able to sit back and watch Grant's euphoria made me almost as happy as the fact that we'd just won the World Series. Nothing will ever compare to witnessing Grant's excitement and joy, and the feeling of relief that came over me. It warmed my heart as nothing else could."

Being a baseball player, Curt missed a lot and now that he has retired from baseball "he realizes how much of his life he did miss," Shonda says. "It's hard. It's hurtful. There's a lot of making up to do and there's no way to go back." She says her husband "never fully understood Grant until he retired" and never recognized the burden Grant's differences imposed on her. She says Curt was thinking, "I'm providing this wonderful life for you and you're complaining" while she was thinking, "I'm doing everything and you don't appreciate what I'm doing." Writing the book, she explained, alerted Curt to the scope of her problems and the couple got counseling "He came in and said, "I had no idea that you were going through all this stuff.' And that was all I needed. I didn't blame him or need to be angry at him. I just needed him to understand that I really was trying my best, and I was frazzled, and I felt like a failure, and I was covering it all up so that he could go out and pitch every five days, that I could handle it all""

In February, 2001, Shonda, then 33, was diagnosed with stage 2 malignant melanoma. The affliction required five surgeries that left 25 scars crisscrossing her back, arms, legs and chest. "We lived a lifetime in 2001," Curt said. "In a 365 day span we experienced probably the highest of highs, from a professional standpoint and from a personal standpoint, and the lowest of lows on both fronts, too. The thing that worried me the most that year was losing my wife and my children not having a mother." That October Curt won the World Series co-MVP honor pitching for the Arizona Diamondbacks, and the media wrote up his wife's battle with cancer. The overwhelming response inspired Shonda to create the Shade Foundation of America. She travels the country warning people to avoid overexposure to sunlight and to have their skin checked regularly. Her foundation has worked to teach thousands of school children about sun-safety and her work has been recognized by the American Academy of Dermatology. She also runs the Boston Marathon each year to raise money for the work. "Every year we provide grant money for schools and community groups to create shade on playgrounds and public spaces," Shonda says. "In the classroom, we introduced the SunWise program with the help of Environmental Protection Agency. We also run a school poster contest to drive home the message of prevention."

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Sherwood Ross worked as a reporter for the Chicago Daily News and contributed a regular "Workplace" column for Reuters. He has contributed to national magazines and hosted a talk show on WOL, Washington, D.C. In the Sixties he was active as public (more...)
 
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