.

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.

Ann Piccirillo April 04, 2012 at 10:34 PM
Jocelyn, you've brought tears to my eyes, and hope to my heart. Thank you so much!
Ann Piccirillo April 04, 2012 at 10:35 PM
Thank you so much Jim, and John. Your words lend incredible strength.
Ann Piccirillo April 04, 2012 at 10:36 PM
Emily--that first look took my breath away. Thank you so much for sharing your story with all of us. And yes, for us, every day is autism awareness day.
Rachel Ahern April 05, 2012 at 12:43 AM
What a fantastic article! You stay a strong...with all of the help she is getting she will thank you one day. I know your daughter loves you and I think you know that. Our. Holden show us in many different ways; sometimes in ways we don't understand, but it's her way. My son is almost 10 years old and he continues to show me many different ways he loves me! You are a fantastic mom...don't ever give up on your daughter. When our children are young they expect us to know them and accept them the way they are...it's not up to us to challenge that. Be well.
Rachel Ahern April 05, 2012 at 12:45 AM
Oops I meant to type our children not our Holden
Ann Piccirillo April 05, 2012 at 01:16 AM
Robin, I could not have said what I feel more eloquently than you have in your comment. Thank you so much!
Ann Piccirillo April 05, 2012 at 06:47 AM
Emily--you go girl!!! You won't give up--none of us will. That's why it's us going through it. As much as there are days when we feel weak, we cannot break. Thank you!
Ann Piccirillo April 05, 2012 at 06:51 AM
Thank you so much for your kind words, Rachel. The days are difficult no doubt, harder still to find a babysitter or family member up for the challenge as our children get older. It's relatively easy when they're young to get a sitter, but I'm sure I'm not alone in saying that offers for help get thin as the kids get older and their needs may be more challenging. I am happy to report that some babysitting courses are now offering classes in watching children with autism. Hopefully in a few years it will be common training. Again, thank you for your words and support, Ann
Ann Piccirillo April 05, 2012 at 06:52 AM
Thank you so much Rachel!
Jennifer April 05, 2012 at 11:17 AM
Patricia Smith, vaccines don't cause autism. Just because you can google something doesn't make it true. Non vaccinators are the left- wing version of right wing climate change deniers. The science is there, you are just choosing not to believe mainstream science and go for your own version of reality. When I see a study that shows zero incidence of autism among unvaccinated children, then I may pay attention. So far I have heard no such research. But there was a large outbreak of pertussis in Ocean county last fall, and if you were the parent of an infant your child was very much at risk from every vaccination objector.
Marcella Reinhart April 05, 2012 at 02:18 PM
Thank you so much for letting other Moms know we aren't alone. My 8yr old aspergers son will tell you each day I say "God give me strength" and I know I can fight on through the tears. When I watch him sleep I know he is my angel from God but when he wakes my day is full of struggles and stress. Who can answer the questions of why nobody likes me or why I am the only kid who doesn't have friends, but a mother. As tears are flowing down my cheeks I know my pain is only mine. My beautiful healthy son could have far worse conditions and we will charge on knowing we are not alone.Thank you for sharing something we try to hide behind our front doors. They are all beautiful children if we can look beyond our own pain.
Lana Romano April 05, 2012 at 03:03 PM
Lana Romano 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!
Sherry Kriss-Dillane April 05, 2012 at 03:29 PM
Ann, 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...
DJ AJ Zampella April 05, 2012 at 04:56 PM
Frank the tank! It's not me Ric. I love you and your manly chest hair!
Cherie April 05, 2012 at 07:57 PM
i am truly blessed to have had the opportunity to have to have read this and pass it along. my child is on the spectrum and so true to pass the knowledge to bridge compassion. God bless you, your family and your daughter
Christina April 05, 2012 at 08:28 PM
Parents of children on the spectrum are some of the strongest people I have come in contact with. This article brought tears to my eyes, as I have met so many parents like you that struggle with this diagnosis. I am a student physical therapist, and have worked in elementary schools with many autistic children, working to engage with activities and even just walking down the hallway in a line or walking up and down the stairs safely. The challenges that parents, siblings and friends face can be scary thing, but I hope that for all of the parents out there that you know that you are not alone, and we are fighting this battle with you.
Ann Piccirillo April 05, 2012 at 10:47 PM
Thank you so much Frank!
Ann Piccirillo April 05, 2012 at 10:52 PM
Which just goes to show that whenever our children struggle, with or without a diagnosis, our hearts break more than just a little. And yet, I always think of those who desperately want a child and cannot have one, or have an incredibly long wait. Their hears so filled with love. No matter what my days and nights are like--I have a child whom I can love. And that, I feel, is such a blessing.
Lisa Howard-Fusco April 06, 2012 at 01:22 AM
Ann, you are an amazing writer.My son has autism and I am at a crossroads in making decisions for him at his school. Thank you for reminding me to be patient and loving with him on days that can be daunting.
Ann Piccirillo April 06, 2012 at 04:55 PM
Marcella, I could not have said it more eloquently than you. Thank you.
Ann Piccirillo April 06, 2012 at 04:57 PM
Lana, thank you for taking the time to write. I, too, feel that I have learned so much from my daughter--important lessons I would not have learned any other way. My daughter has also taught her younger "typical" brother so much as well--most especially compassion for other children who seem to be struggling. Again, thank you so much.
Ann Piccirillo April 06, 2012 at 05:00 PM
Thank you so much Sherry. I have a very dear friend whose son was diagnosed with diabetes when he was 2 and my heart breaks for her. How often, she's almost lost him because, as you well know, as their bodies change their numbers spike and until you can get control of the medication it's scary in a real life-or-death way. I feel that all of us as parents who have children with medical issues go through the same soul searching--the same worry. It's nice to know we're not alone. My best wishes for you and our son. You are an amazing mom.
Ann Piccirillo April 06, 2012 at 05:01 PM
Thank you so much, Cherie. All blessings to your family as well.
Ann Piccirillo April 06, 2012 at 05:03 PM
Christina, knowing that there are wonderful people like you working with our children is a comfort that you'll never know. Thank you so much for helping our children. I call all the people who have worked with my daughter through the years "my angels" because they really are. And so are you. Thank you.
Ann Piccirillo April 06, 2012 at 05:04 PM
Thank you Lisa. Hang in there--somedays patience is hard to find, but those are the times we need it most. Remember, you are stronger than you think and you are not alone.
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.

Boards

More »
Got a question? Something on your mind? Talk to your community, directly.
Note Article
Just a short thought to get the word out quickly about anything in your neighborhood.
Share something with your neighbors.What's on your mind?What's on your mind?Make an announcement, speak your mind, or sell somethingPost something