In My Daughter’s Eyes: A Story of Autism

This story could be mine. It could be yours. It could be your sister’s, your friend’s, your neighbor’s, the cashier at Walgreen’s, the bank president’s, the school maintenance man’s, the owner of your favorite restaurant. In New Jersey, a state that has one of the highest ratios of children with autism, this story is universal. Autism is a disease that gives itself freely and without consideration for demographics. There is no way to protect your child from it; no diet or vaccine that will prevent it. It is pervasive; it lives among us.

Getting my daughter to love me is like being on an endless job interview. I wanted children because I thought I had within me the capability to be a successful mother. I am loving, nurturing, patient, quick to think on my feet, and not afraid to work long hours. However, I’m years away from knowing if I got the job with my daughter. 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 soothed her. My daughter is autistic and for her, love, like any emotion, is a learned task. There is a great deal of heartbreak in this; imagine having to teach your child how to love you.

But there is also an incredible lesson to be learned, for 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? My daughter rebuffs most physical contact so to lather her with hugs and kisses is rather traumatic. 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 struggle with trying to keep their children well behaved, I struggle to teach my daughter basic behavior.

For those of you who have ever been a part of the world of Applied Behavioral Analysis (ABA) you’re all too familiar with the mantras, “This is sitting,” “This is walking” and “This is standing.”  Nothing comes naturally except frustration for both the parents and the child.

I used to lie awake nights wondering why this has happened to our family. Why is our child autistic? 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 disease had not come into my life.

In moments of weakness I 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 last week.

Last week while I was 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. My heart soared with unimaginable joy. In that moment her eyes cast a wise stare revealing to me that there is a lifetime of knowledge hidden behind the perceived emptiness. My eyes strained to hear more, and in an instant her stare pleaded 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 the lesson takes time and in the interim, I must let her teach me how to believe.   

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.