Gina and her girls

Gina Gallagher lives in Massachusetts and has two daughters, Katie and Emily. Katie, age 14, has Asperger's and Emily, age 11, has learning disabilities. She recommends putting down all of those depressing books describing what could happen to your child and focus on the positive instead.

To share the joys and challenges of raising "imperfect" children in a perfection-obsessed world, she's co-authored a must-read book with her sister (the mother of a bipolar child) called Shut Up About Your Perfect Kid, which will be released by Random House on August 3.

She shares her story with us below.

How old was your daughter when you first suspected she might have autism? What were those initial signs?  

My daughter, Katie, exhibited some early signs of autism at about 6 months. She'd look at things out of the sides of her eyes, flap her hands, etc. In preschool, they noticed she had social difficulties and poor motor skills. My husband and I never thought it was autism mainly because she was so verbal from a young age. We'd never heard of Asperger's, nor did we know autism was a spectrum disorder.

In those first moments when you found out her diagnosis, how did you react? And how did that reaction change over time?   

I felt like I'd been punched in the stomach. I felt tremendous grief -- grief that she'd have a difficult life and that my plans for her perfect life would be shattered. I felt pity, anger, hurt, and deep sadness. Several years ago, when I began writing our book, I learned to see Katie differently. Now, I celebrate her differences and see both my daughters as the greatest gifts I could've been given. Both of my daughters have taught me to appreciate the little things in life -- to celebrate milestones. They've also helped me rearrange my priorities and see past the differences of others. It's ironic because as their parent, I was supposed to teach them, but they both have taught me such valuable life lessons. They overcome adversity every day and get up every morning ready to take on the world.

What's her exact diagnosis? And what does that mean in laymen terms?

Katie has been diagnosed with Asperger's syndrome. People often refer to Asperger's as having a dash of autism. It basically affects Katie's ability to make connections with people and to pick up on nonverbal communication (facial expressions). To those who don't know about Asperger's, she may seem as though she's in her own little world. Those who know her think she has a creative outlook on life and a terrific sense of humor.

What are three things you wish someone would've told you about autism that you had to learn on your own?

  • That it's nothing you could've caused. My first reaction was to blame myself. I shouldn't have let them give her a shot, I shouldn't have had an epidural. Then I moved on to blaming my husband.
  • To go beyond the label. Just because your child has autism doesn't mean they may not be able to enjoy successes in life. Of course, my daughter is very verbal and high-functioning. It's easy to see the positive in that, but when you have a child that has lower-functioning autism, that's a lot harder to see.
  • Stop reading depressing books. I remember my husband grabbing Asperger's books from me and telling me to stop reading them. All I did was cry when I found out what could happen.

 
What or who has been your greatest resource for information and support during this time?

My parents have been my greatest source of support. They remind me every day that parenting is about letting go of the expectations and learning to love the reality. My father gave me the best advice: "Gina, just love her and enjoy her. She's a joy."

They've always loved and accepted my daughter for who she is. And they've always been there to cheer me up or help me out when I'm struggling.

I've also found support groups with close friends who have kids with similar issues to be extremely therapeutic. There's just a connection between parents of kids with special needs. My sister and I call it the imperfection connection. If you don't have a network of people who understand, you can feel very alone. I always tell parents to reach out to others.
 
What's been the most challenging part of dealing with a child with autism?

Getting others to accept them and not judge them.

Tell us something about your daughter that's special or unique that you love.

Katie has a very unique outlook on life and a tremendous sense of humor. "Mom, so what if I didn't get all As and Bs. I think it's boring to get the same grades."

Finally ... the debate around the cause(s) of autism is very heated right now. What do you think causes autism?

I think there's validity to many of the arguments -- immunizations, food chemicals, etc., but I prefer to focus on my daughter's unique issues and what she needs to manage them. And through my book and speaking, I try to help other parents do the same.

The most important thing I can do for my child and other parents of children with disabilities is to educate people about disabilities and let them know that if you have a child that's special, you're not alone.