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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.

Related Topics: Autism, Child Care, and Parenting

P. Edelson

9:15 pm on Tuesday, April 3, 2012

A wonderful, moving account of the author's life with her daughter!

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lil mama

9:19 pm on Tuesday, April 3, 2012

This is very heart felt. I have three children one with a speech delay. When she was a toddler they weren't sure if autism was a cause for her not talking. I am grateful that as she is seven years old we can't get her to stop talking and it just turned out she wasn't ready for words till after two years old. My heart goes out to all that have the challenge of every day life with autism. Working in group homes for nine years I know the difficulty and the strengths it takes to get just that one brief moment of triumph. Don't give up. Hold strong and take a breath if you become overwhelmed.

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Ann Piccirillo

6:52 pm on Thursday, April 5, 2012

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.

FbS

9:40 pm on Tuesday, April 3, 2012

what a beautiful read. You are a good Mom.. Be strong.. She loves you.... Its just an emotion she cannot reveal to you as of yet..

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DJ AJ Zampella

12:56 pm on Thursday, April 5, 2012

Frank the tank! It's not me Ric. I love you and your manly chest hair!

Carla

9:45 pm on Tuesday, April 3, 2012

As a mom of an autistic daughter too, I understand everything you've written about. Tears were streaming down my face as I read this. I also wonder if she can feel my love or if she even knows how important she is to me and how I wish that I can make her better. As a parent it is so hard not to be able to fix the boo-boos and take her pain away. I often wonder if she is happy. I hope and pray that one day she can tell me. It's funny how reading this makes me feel such a bond with you even though I don't know you. Stay strong my friend.

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Ann Piccirillo

6:33 pm on Wednesday, April 4, 2012

Thank you Carla. We are bonded--all of us. Remember, in those dark, difficult, very lonely moments we are all together. Thank you so much for your honest, heartfelt words.

emily stewart

9:49 pm on Tuesday, April 3, 2012

I love this! Keep doing what you're doing! My daughter is turning 3 soon and it has been an uphill battle but not one I'm willing to give up! Very moving article, thank you.

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Ann Piccirillo

2:47 am on Thursday, April 5, 2012

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!

Chester Copperpot

9:51 pm on Tuesday, April 3, 2012

Nice article. I'm sure with the rate that autism is happening there are many parents who share the same sentiment and are left feeling alone and isolated. In this time period, you almost have to have lottery like odds to either not have autism affect you in your family or through a friend. I'm sure it's relieving to many parents to know that awareness of the matter is spreading and to realize that they're not so alone. Best wishes to the author and other parents who display such strength and love on a daily basis.

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Jack Wagon

5:41 am on Wednesday, April 4, 2012

Thank you. As a father of three girls, I know that song well. You've emotionally put into words what parents with children that have autism live 365 days a year for the rest of their time here on the earth. God only gives us what he knows what we can handle in life.
Stay strong for your daughter. You are her advocate, friend, nurse, and teacher. But most of all, you'll always be her mother.

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Leslie

6:24 am on Wednesday, April 4, 2012

Beautiful article. I am sure your daughter's love is in there, but the Autism gets in the way of her expressing it to you. Thank you for sharing this, Stay strong. <3

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Rachel Tomasi

8:15 am on Wednesday, April 4, 2012

Beautifully expressed and so honest. I keep having to wipe the tears between the article and replies. I have 2 neighbors on my block and the next over who have aspergers (high functioning autism ) and a friend I we to school with and talk on Facebook now in north Jersey whose son sounds moderately affected. I know it's pervasive in their lives. I'll never forget a tv movie I saw as a preteen about a mom and son with severe autism (based on true story) who busted her hump and one day he finally made the connection with her. I hope those of you dealing with this journey of love yet frustration take the time to let a friend or mature babysitter spell you on occasion for a break and to reconnect with your spouse or significant other. It will only refresh you so you have a more relaxed patent for your child. I know I posted a couple of awareness articles yesterday on fb. God bless you all living with this illness.

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Ann Piccirillo

2:51 am on Thursday, April 5, 2012

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

Jocelyn Stadnik

9:20 am on Wednesday, April 4, 2012

I am the proud mother of an 18 year old son with Aspergers. In the early years of his life, we knew that there was a difference, but because he was not severe, it went undiagnosed until he was almost 8 years old. I know what its like to never get a hug, no kisses, no acknowledgment. Without any support from my family, I was his only advicate. I pushed him thru every therapy I could find, OT, PT, Speech, anger management, whatever it took. Probably around his 16 birthday, he willingly came up to me for the first time ever and gave me a hug. I still cry everytime I think of that moment. It was around then I realized the path that I carved for him was working. I had no idea if he was ever going to be able to handle the social aspect of High School. I am here to tell you with lots of determination on his part, he has been on the honor roll, pretty much every year, and getting ready to graduate with scholarships. The future is very uncertain for him right now, as for all kids with Autism, but without a parent to push them its that much more uncertain. The way I see it, when a child is affected with Autism, he or she is here to teach everyone around them strong life lessons. Lessons you would never had gotten any other way. For those lessons that I have learned along the way, I will be eternally greatful to my son.

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Ann Piccirillo

6:34 pm on Wednesday, April 4, 2012

Jocelyn, you've brought tears to my eyes, and hope to my heart. Thank you so much!

Jim

10:24 am on Wednesday, April 4, 2012

Parents who give their all to special needs children are true, unsung heroes. The world can be quite cruel to children who are different-- and to their parents. For every stare, nasty look and unkind word you and your children receive, please know that there are a million people out there who appreciate your labors of love.

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John Doe

5:45 pm on Wednesday, April 4, 2012

Such a wonderful, insightful comment to a woman who wrote such a moving story. For the parents of special needs children who need our support and understanding, Jim is right. We see and appreciate your love and caring. Don't ever think you are alone.

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Ann Piccirillo

6:35 pm on Wednesday, April 4, 2012

Thank you so much Jim, and John. Your words lend incredible strength.

Marjorie Smith

1:26 pm on Wednesday, April 4, 2012

Mommy - My heart goes out to you and I hope that an answer is found soon. Thank you for providing the link to the study. This study should not be disseminated as a representative sampling of the children of New Jersey as it surveyed a very limited sample of children (7,000) in metropolitan Newark.

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diane

2:26 pm on Wednesday, April 4, 2012

Ann you put all the small stuff in perspective in your elegant, heartfelt article. We could see through your eyes, the challanges and rewards. May God bless you and your daughter always.

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Emily

3:26 pm on Wednesday, April 4, 2012

This is such an amazing story! I am also a mother of a child with autism, I can understand the uncertainty when trying teach about receiving love and giving love. This brought to tears to my eyes, I can remember the first time my son looked into my eyes and actually meant to do it. Every child is unique and wonderful in their way. And every child has their difficulties. It is my absolute belief that God gives parents children with Autism for the simple reason that we can handle it! And it is our job in life to help our child grow up to reach their full potential! Yes, April is Autism awareness month, but for those living with children, relatives, friends, neighbors... on the spectrum every day is awareness day. We need to honor those on the spectrum! And show our support to those who love and care for them on a daily basis. We are warrior moms fighting every day for our children to succeed!

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Ann Piccirillo

6:36 pm on Wednesday, April 4, 2012

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.

Patricia Smith

3:45 pm on Wednesday, April 4, 2012

Autism can be reversed if treated before the age of 10. Heal your child. Go to www.drcarley.com Lots of info and Videos. Then Google reversingvaccineinduceddiseases.com for a protocol to heal your child. READ-about us-services-vaccine induced disease-pet page and media page. The Hippocrates Academy can reverse autism. Autism is non fatal subacute sclerosing panencephalitis. And for god’s sake don’t let them vaccinate your child ever again.

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Linnette Frey

3:56 pm on Wednesday, April 4, 2012

What a beautiful article! God bless you and your beautiful little girl!

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Robin

6:29 pm on Wednesday, April 4, 2012

Robin

Honest and beatiful article. I'm a mom of a 13 year old child with aspergers the future is uncertain and thought of much more deeply when you have a child on the spectrum everytime he walks out the door I take a breath and worry. Is the world going to be nice to him? Will they understand why he is different? Is he going to be ok, can he handel what situation comes up? His thoughts and reactions are so honest, real and innocent. Their is no judgement or manipulates it is what it is.I think the world would be a better place if everyone had a little bit of the spectrum in them. I love my son and I'm proud of him I would not want to change him, but maybe I would want to change the world.

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Ann Piccirillo

9:16 pm on Wednesday, April 4, 2012

Robin, I could not have said what I feel more eloquently than you have in your comment. Thank you so much!

Rachel Ahern

8:43 pm on Wednesday, April 4, 2012

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.

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Rachel Ahern

8:45 pm on Wednesday, April 4, 2012

Oops I meant to type our children not our Holden

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Jennifer

7:17 am on Thursday, April 5, 2012

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.

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Marcella Reinhart

10:18 am on Thursday, April 5, 2012

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.

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Ann Piccirillo

12:55 pm on Friday, April 6, 2012

Marcella, I could not have said it more eloquently than you. Thank you.

Lana Romano

11:03 am on Thursday, April 5, 2012

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!

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Ann Piccirillo

12:57 pm on Friday, April 6, 2012

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.

Sherry Kriss-Dillane

11:29 am on Thursday, April 5, 2012

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...

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Ann Piccirillo

1:00 pm on Friday, April 6, 2012

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.

Cherie

3:57 pm on Thursday, April 5, 2012

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

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Ann Piccirillo

1:01 pm on Friday, April 6, 2012

Thank you so much, Cherie. All blessings to your family as well.

Christina

4:28 pm on Thursday, April 5, 2012

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.

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Ann Piccirillo

1:03 pm on Friday, April 6, 2012

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.

Lisa Howard-Fusco

9:22 pm on Thursday, April 5, 2012

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.

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Ann Piccirillo

1:04 pm on Friday, April 6, 2012

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.

beth

7:32 pm on Friday, April 20, 2012

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.

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Denise Sikora

6:26 pm on Sunday, April 22, 2012

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.

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Face2Face Makeup Artistry

7:58 pm on Sunday, April 22, 2012

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.

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Cecilia

8:20 am on Friday, June 1, 2012

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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