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In My Daughter's Eyes, A Story of Autism

An editor's personal journey through autism.

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. 

JM Mom April 18, 2012 at 06:20 PM
Ann, My beautiful almost 4 year old boy is also on the spectrum. He is such a joy. I loved your article and I think that all of us parents of children with autism need to learn from each other's experiences and support each other as much as possible. Even though we have similar stories, our experiences, reactions and feelings are different. Learning from eachother will bring new insights and will help us see, notice and practice things we would not have otherwise. I see the love I pour into my son reflected back often even though he doesn't show it in the conventional way. Lets lift eachother up, lets stop judging.
Edwin April 19, 2012 at 03:34 AM
Ann, I am searching for the right words to say after reading your article and the responses that followed. Firstly, thank you for opening up and sharing your feelings. Nowadays I feel like we (including me) are always on guard of sharing how we REALLY feel. I can honestly say raising a child has been the most difficult yet most rewarding and loving expierence in my life. I realize how blessed my wife and I are to have our son. In reading your article I can tell how much you love your daughter and quite frankly that love is beautiful. Thanks again for sharing and keep doing what your doing! Your reward awaits you Matthew 7:7
Martin Rosenfeld April 19, 2012 at 06:48 AM
Ann: Your article was eloquent and touching. For 12 years I have subbed in the Bergen County Special Needs program. I have seen many autistic students develop great skills over the course of their educational years. New theories and strategies are being developed on a constant basis. It is always gratifying to see how a special parent, teacher, etc. can make real breakthroughs. All the readers are certainly hoping and praying that you will experience many of these highs as your daughter progresses through life. P.S. I have a cousin whose autistic child graduated a special program at Indiana University. Great achievements are within reach. God bless you for sharing.
Marjorie Tracey December 19, 2012 at 02:01 PM
Occidentalist, What a smug and self serving comment you wrote. I work in the field and have seen parents like you who take credit for their childs improvement. Most children will improve with services, but some skills elude them, depending on the severity of the autism. most children seem high functioning at the preschool age because not much is asked of them, it gets tougher as a more complex skill set is expected as they age. It is no wonder peolpe don't feel safe expressing their feelings and fears, there are people out there like you who are poised to judge them.
Madison April 03, 2013 at 02:06 PM
It is all part of God's grace. Many of us are given gifts that we may not see as "gifts" but as something to struggle with. The struggles and hurdles are what allow us to grow into each individual, special person. I believe it is largely up to us to make the most of what we are given and find the beauty. I say this as a person who deals with physical as well as neurological disorders in my immediate family.

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