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.
Again, thank you for your words and support, Ann
What a beautiful article! My 13 year old daughter has a diagnosis of autism too. I love her with every fiber of my being. I know that God gave her to me for a reason. I have learned so many things from her. The most important lesson is to stop and smell the roses. The smallest accomplishments for her are HUGE! Her twin sister is a "typical child model" for her but she has also taught her sister to be the compassionate, loving girl that she is. My daughter has enriched our lives more than words can say. When she hugs me and kisses me, it melts my heart everytime. It has and continues to be challenging to raise her but I wouldn't have it any other way. She has brought so much joy and love to our family. I am crying as I write this because I too worry about the future for our children. I try not to think about the future too much...just take one day at a time! As long as my daughter is healthy and happy, today is a great day!
Wow. I can say to some degree I can relate. In a totally different way. You mentioned that Autism wasn't welcomed in your home, as diabetes wasn't welcomed in ours. Diabetes as well 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. Our son's story was in here three times, and people would call me or even write how touched they were with our families story. That is brought tears to their eyes. How can we do what we do 24 hours a day 7 days a week 365 days a year. My response was always and still is, "We have to, he is our son" This is what we were meant to do. Despite all the heartache, all the times we feel helpless or alone, or when we almost lost him. Or even in the middle of the night when we don't sleep well. You do what you have to do for your child as a parent. So when they say it brings tears to their eyes. As a mother having a child with a disease where there is no cure ( a different disease of course) but I still know the pain. I have six friends that have children with Autism as well. I have heard their stories. But I have to say, none were put in the words as your was. It literally brought tears to my eyes. You are amazing and giving mom. For you and your daughter as well as my friends, my home is lit up BLUE FOR AUTISM...