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In My Daughter's Eyes, A Story of Autism

An editor's personal journey.

This story is not mine to own. It could belong to you. It could belong to your sister, your friend, your neighbor, the waitress at Jersey Boys, the bank president, the school principal, the police officer directing traffic. 

In New Jersey, the story belongs to all of us. The findings of a federal study released last week show that one in 49 children, and one in 29 boys, are diagnosed with autism in New Jersey. Nationally, one in 88 children are diagnosed annually. 

Autism is a disease that gives itself freely and without prejudice. There is no way to protect your child from it; no diet or vaccine that will prevent it. It is, as experts will tell you, pervasive.

Autism has been an unwanted guest in my house for 11 years. It has attached itself to my daughter in a way that I never can. But like so many people I know, I get up and go to battle everyday and lie awake strategizing every night. 

You see, I was not graced with a baby who came into this world armed with unconditional love for the woman who gave birth to her, fed her, cleaned her, changed her, rocked her and tried so hard to soothe her. My daughter is autistic and like any emotion, for her love is a learned task. There is a great deal of heartbreak in this; imagine having to teach your own child how to love you. 

But there is also an incredible lesson to be learned. How do you teach someone how to give love, how to receive love? How do you even teach a child what love is? Does love reveal itself in the tone of your voice? Is it embodied in physical representations? Can she feel my love in those moments when I remit to her silent, yet willful resistance to everything? Or does it linger in the steady repetition of structured days and nights? And while most parents encounter difficult moments, every moment of every day is difficult for the people who live in the world of "special needs."  

Getting my daughter to love me has been like being on an endless job interview. I feel qualified, but not confident. I wanted children because I thought I had within me the capability to be a successful mother. I like to think that I am loving, nurturing, patient, quick to think on my feet, quick to laugh and not afraid to work long, exhausting hours. However, I'm 11 years into the game, and I still feel years away from knowing if I got the job with my daughter. 

I used to lie awake nights wondering why this has happened. There is no family history and during my pregnancy I ate healthy foods, I took pre-natal vitamins, I gave up caffeine, and received proper pre-natal care. 

Now I have ceased asking “why” and have surrendered to the fear. The fear of where the future will find my child. The fear of thinking, “Who can give her the care and attention that I do if something should happen to me?” The pulsating panic I feel when I realize that my life, my future, is as uncertain and unplanned as hers. 

In moments of strength I gain great comfort in the realization that this journey that I am on is preordained and that the lessons derived from it will not only make me a more empathetic and compassionate human being, but will take me to a place that I know I would not have arrived at if this diagnosis had not come into my life. 

In moments of pure weakness I fall to my knees and weep. 

A few years ago there was a popular song that played repeatedly on the radio called In My Daughter’s Eyes. I would sob every time I heard it and most times I had to change the radio station because reflected in my daughter’s eyes is a deep emptiness that mirrors exactly how I feel. 

Until that moment when her eyes connected with mine for the first time. While sitting at a red light I looked at her through the rearview mirror and our eyes connected. For the very first time she looked at me with purpose and intent. Cars beeped behind me, but I could not, would not, be pushed from that moment. 

In that moment her eyes revealed that there is a lifetime of knowledge hidden behind the perceived emptiness. Her eyes seemed to plead for my patience, my calm, my strength. Her eyes emitted the promise that over the long course of days she will reveal to me who I really am; who I am meant to be. But that lesson takes time and in the interim I must let her teach me how to believe--not only in her, but in the depths of my own strength.    

April is autism awareness month. Please reach out to any parent you know whose days are spent in autism’s grip and lend them compassion. Take this time to explain what autism is to your children. Chances are, more than one of their classmates has been diagnosed with autism and arming your child with information will help them to exercise compassion, rather than assign labels, when a classmate is having difficulties in the classroom, the cafeteria, the auditorium, or the schoolyard. Because it is by building compassion in each other that we build bridges to understanding.

Rick April 10, 2012 at 08:11 PM
Great story.
beth April 20, 2012 at 11:32 PM
great story...I am the mom of 2 girls, my 12 yr old has CAPD and my 9 yr old has had a speech delay since being a toddler, she didn't talk til she was almost 3. Her vocabulary wasn't upto grade level. She is in the 3rd grade class, this is our 2nd yr doing mainstreaming and she has attended school since she was 3. Every year I go for my IEP meeting,to discuss the following year, this is the 1st yr that I'm not happy with what child study team has discussed. I also feel that my daughter is too comfortable as she has been in the same school for 6 years. I left the IEP meeting today thinking that I am going to contact another school for my daughter for September.
Denise Sikora April 22, 2012 at 10:26 PM
26 years ago, there was no such thing as an autism diagnosis. My son had many of the signs, but he was labeled emotionally disturbed. He was my first child and I was in my late 20's and not very assertive. Having to fight for his rights throughout his childhood changed the person I was. My husband says that he knew, after fighting for my child for so many years, that I would become some sort of an advocate. There is a reason for everything, and although that seems like such a common saying, after having raised this child through the mostly hard, difficult times, to watch him still struggle to get his life together, and more importantly to share his life with him and to be there in every way for him, well, isn't that what it's all about? We had 2 children, our oldest was special needs & our younger one became a special needs teacher. Isn't it amazing how that has worked out? So I see my daughter, who grew up in a house full of chaos, now give us advice on things we can do for her older brother. And I have become a medical bill advocate, helping people maximize their health insurance coverage for such things as nutritional counseling and biofeedback, and to provide support thru my services to families who are navigating their health insurance system trying to get treatment for their autistic or special needs child. So by my son having been a special needs child, it resulted in 2 people who became advocates for the special needs children & their families.
Face2Face Cosmetics April 22, 2012 at 11:58 PM
What a beautifully written story - it left me with tears streaming down my face. My heart goes out to you and everyone who has to deal with this on a daily basis. I pray for a cure and want to mention that the Friendship Circle of Manalapan does wonderful things. http://www.youtube.com/watch?v=gFOUOAjmOyk Thank you for sharing a bit of your journey.
Cecilia June 01, 2012 at 12:20 PM
Beautifully written. I know the days of being on your knees, and remember the astonishment and utter joy when my child got annoyed with me and talked back to me. God Bless.

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