My Autism Story: Gina's Daughter Has Asperger's

Being a Mom 6


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.

autism

6 Comments

To add a comment, please log in with

Use Your CafeMom Profile

Join CafeMom or Log in to your CafeMom account. CafeMom members can keep track of their comments.

Join CafeMom or Log in to your CafeMom account. CafeMom members can keep track of their comments.

Comment As a Guest

Guest comments are moderated and will not appear immediately.

nonmember avatar Bernadette

I loved what you said about " letting go of expectations and learning to love the reality." When you become a parent you have all these hopes and dreams for your children and when you find out that your child has special needs it truely hits you pretty hard. You do have to let go of of those expectations and truely appreciate them for the laughs and smiles they have the ability to achieve!

Iamgr... Iamgr8teful

I'm glad your mom has been such a support for you. When my husband's stepsister learned that he son had autism, his mom blamed her. I tried explaining that it was nothing that she caused, but it didn't seem to help. You are a blessing to both of your children!

akhlass akhlass

You're a wonderful Mom! I too, cherish every single day that I have with my daughter, Ameena. You are an inspiration to all Moms! :) See you on Twitter @disabilitykids I'm here supporting you too!

cherylgo cherylgo

Hi! Someone told me about your website not that long ago, and I've been enjoying visiting! Please blog more though! Hehe! Thanks!

Alexis Bandin

Hi, i was just wondering after reading your story about your daughter, how would you feel if a high school student by there senior year was to make an action plan about there research proposal and they did it on autism and felt like that it didn't only affect the child but the people around like family and this high school student was to make a plan to raise money make a video and post it on YouTube and ask people to make donations and tell them what really goes on with autism and get people informed on how this disorder how gone fairly unnoticed for along time and it needs to get out so people know and understand much more about autism, would you like to see that happen?

nonmember avatar Julie

I'm stil quite new to autism I haven't been ti any support groups yet not til June my daughter is 4 and I jst found a month and half ago it's crazy everythnk I read about moms hits mi so much because at first I felt numb ur child is fine playin or doing or being theirselves around u and it's moms it affects at first in a huge way I supposes its just ur brain goin thru motions of acceptance in lucky I'm a hairdresser with quite a lot of clientele who r teachers and ta's and they have talked to mi n helpt mi a lot only today I was doin one of mi clients I've been doing for a while n I told her I thought she was a teacher bt she told mi today she's the lady the manages all the assessments and told mi wht ti expect when I go ti the development centre she told mi today "beleive it or not I love workin n teaching children with autism etc more that other children I was goin to say normal then but strange u do that a lot after finding out about mi daughter watch which words affend mi u don't like that u want ti be able ti use whatever word is I want without it affecting mi hope whoevers reading thus understands where im at my little girl is a beautiful intelligent girl and more clued up then I am u never want her ti feel different x

1-6 of 6 comments
F