Gina Gallagher, a lifetime sports enthusiast and classic overachiever, always fantasized about her daughter Katie’s future. “I thought she would be a star athlete, even better than I was.” But when Gallagher enrolled her in soccer at age 5, she discovered Katie was uncoordinated, preferred chasing butterflies rather than the ball, and barely talked to any of the kids on the field.
That was just the beginning. A few years later, Gallagher would learn that Katie had Asperger’s syndrome, a form of high-functioning autism, which would affect her daughter’s ability to interact socially and perform routine motor tasks. Almost immediately, Gallagher had to change her expectations. “I knew then that Katie’s life was going to be so difficult. I was devastated. It was like being in mourning: desperately trying to deal with the loss of that ‘perfect child.’”
For Gallagher it was not an easy task, particularly in this age of MVPs, awards banquets, and honors classes. “I really felt like I didn’t fit in. My daughter was struggling at everything — sports, academics, and social situations. And it seemed wherever I went, I would find parents eager to tell me about how many goals their child scored, or the straight As they’d earned.”
Fortunately for Gallagher, she wasn’t alone. Her older sister, Patty Konjoian, the mother of Jennifer, a child with bipolar disorder, was dealing with something similar. Though Jennifer did not have the sports and social struggles that plagued her younger cousin, she did suffer bouts of severe depression and periods of mania, which made life very difficult for her parents. “At one point, I was struggling to get Jennifer into the right hospital and a mother actually told me that she understood because she was struggling to get her child into an elite soccer camp.”
Generally upset, and anxious for their children, the sisters started comparing stories one day and ended up laughing. “We’ve always been able to find humor in things,” says Konjoian. “We’d listen to parents bragging about how their children were at ‘the head of the class’ and we were just happy if ours went to class.”
Soon after, they decided to write a book about their family experiences. Shut Up About…Your Perfect Kid! (Shut Up Industries, $15.95) features anecdotes that encapsulate the humor of raising “imperfect” children in a perfection-preoccupied world. “We know the name is a bit controversial, but the book is not really about anger. It features our personal journeys and the powerful lessons our special needs’ children have given us,” the authors explain. These lessons have include such basic mantras as:
—Appreciate the little things in life
—Take one day at a time
—Gain a greater appreciation of family
—Be more accepting of others
—Not be as materialistic
—And simply to be real
And they share some of the real-life coping techniques they’ve used to release stress:
—Attending support groups. “We went to one in particular where wine was served. We ended up having such a good time, we forgot we had kids.”
—Doing something for themselves; such as playing adult women’s basketball
—Going for long drives
—Getting a puppy to help the Asperger’s child make friends.
Their message — and approach — actually goes beyond the parenting of just special needs kids. “Stop judging your children by society’s high standards and your own childhood expectations and love them for who they are,” they urge all parents.
This message now rings true for Gallagher. “Before I began writing this book, I thought Katie’s Asperger’s was the greatest failure of my life and wanted desperately to cure her, even asking my husband if we could take her somewhere to be healed. But during the process of writing this book, I underwent an amazing metamorphosis. I no longer want to change Katie; I want to change the world by helping others see what she has helped me see, and that’s the beauty and individuality of Katie and imperfect kids like her.”
All of this, of course, doesn't mean parents should never brag about their kids. The sisters would just encourage parents to:
—Know your audience. Don’t tell a parent of a handicapped child how fast yours can run.
—Ask parents about their disabled children. “We very much want to talk about them. Ask us what their interests are and why we’re proud of them.”
—Think about the other qualities that make your children special. For example, instead of bragging about how many goals your child scores, talk about their hard-work ethic or dedication.
—Think before sending a bragging holiday newsletter. Does a parent whose child is really struggling need to hear how well yours is doing on the baseball diamond?
— Don't be so quick to judge. If you see a child screaming in a restaurant or in the grocery store, don’t label the mother or father a bad parent. The child may have autism and this might be his/her method of communicating.
—Teach their children tolerance — to accept kids who learn, look, or speak differently. Tolerance starts at home.
And, they add, “Don’t be afraid to ask us questions about our children’s disabilities and things you don’t understand. It shows us you care. We think most people really do care; it’s just that they don’t know how to talk to us about our kids.”
Authors Gallagher and Konjoian