When Kristin Arniotis’ son, Billy, who has autism, was four years old she was sitting at home one day thinking about his “quirky” behaviors and started to write them down.
Unlike many other observers of her son’s behaviors — looking at objects closely with his eyes and memorizing tons of facts – his loving mother saw the positive side to autism — a neurological and developmental disorder than can affect speech, socialization and various behaviors.
Instead of trying to change her son, Kristin saw the potential of what his behaviors could be. From these observations, a small yellow paperback book with a big heart was born.
The book, I have Autism…And That’s Okay, (Summerland Press), is Kristin, Billy, and their entire family’s way of changing the world, and what a better time than April, which is Autism Awareness Month.
Kristin’s husband, John, illustrated the book. While Billy, now seven, is the main attraction. “I run back and forth a lot to organize my thoughts…maybe someday I will be a track star. I have so many things I like to do and so many people I love…Oh…and I have Autism…and that’s okay,” the book reveals.
The book’s positive message of patience, love, kindness, and acceptance is gaining momentum. Kristin and her son have been featured on Fox 29’s local Good Day Philadelphia news program, and held several book signings in the suburban Philadelphia area.
While his mom is articulate and passionate about the book – her seven-year-old son is the star of the show. When asked why he likes this book, Billy recently replied: “I like it because it’s all about me.”
Living in a society that doesn’t accept differences has been difficult for this loving mom, who has four sons: Billy, 7, Nicky, 4, and two-year-old twins, Jake and Anthony.
“I want everyone to see my son as I see him: my beautiful, loving sweet angel, who happens to have autism. I don’t want people to look at his behaviors and see a problem,” Kristin said. “He’s perfect the way he is. I just want people to love him and accept him the way that we do.”
Family means everything to this mom and her son. The book was written in loving memory of Kristin’s mother and Billy’s grandmother, Debbie Chakler, who died May 20, 2013, at age 57, after a 22-month battle with stage four pancreatic cancer.
Like all moms, Kristin worries about all of her sons, but especially Billy. “I had a really hard time sending him to school. After all, he was my first child and I was concerned — what if the teachers aren’t patient enough or what if the children are mean?”
While many families around the nation have been touched by autism, there are staggering statistics to consider. Autism affects one in 68 children today. Boys are four times more likely to develop autism than girls. Autism greatly varies from person to person, so no two people with autism are alike.
Children with autism benefit greatly from early intervention and services such as the ones Billy received. Sometimes navigating the educational system can be daunting and school officials can be uncooperative, but parents like Kristin know they have to advocate for their children.
Billy received speech therapy starting at 18 months old as well as extensive occupational therapy. As a result of this support from therapists and the family, he learned focus, following directions and other vital skills. So much so that by age four and a half Billy had taught himself to read, and was reading to his classmates – all big milestones.
Today, Billy is in a 100 percent inclusion class at a public school in Philadelphia, which is a major achievement. He still receives occupational therapy, which has been a key aspect to his development. In fact, early intervention for special needs children is a major factor in their educational and social success.
Billy’s dad, 39-year-old John, works as a manager at a mortgage company. But when he saw his wife’s passion for the book, he started drawing. Soon, he was the book’s illustrator.
“As a child I took art classes, but I had never illustrated anything like this before. I was following my wife’s lead,” explained John. “One Saturday morning we sat down at our dining room table and made pictures to fit the words, and it worked.”
The proud husband and father says that his goals are clear. “If our book helps one dad, mom or child understand that it’s okay, then it was worth it,” he said.”
Dr. Wendy Ross, a leading development pediatrician who diagnosed Billy with autism when he was two years old, believes strongly in the themes of the book – acceptance and inclusion. In fact, she encouraged Kristin and her family to have the book published.
Ross is the director of the Center for Pediatric Development and founder of Autism Inclusion Resources, or AIR. “The Arniotis book is a social story for the rest of us,” said Ross. “It shows us how to look past the label of autism to see and appreciate the people inside. This is a must read for everyone who knows a child with autism.”
Ronald Chakler, Kristin’s father, is glowing with pride and knows that his late wife would be as well. “I cannot begin to express in words how proud I am of Kristin and John for the small part they are doing in helping to raise awareness for this ‘epidemic’ that is sweeping our country today,” he said.
“To openly put themselves ‘out there’ and chronicle their personal journey takes a great deal of courage, compassion and empathy. I mostly enjoy the simplicity of the book, and, at the same time, the powerful message it conveys about the possibilities for children who are struggling with autism,” says Chakler.
“The response that we have gotten from everyone that has purchased the book is overwhelmingly positive,” the proud grandfather said, “and the upbeat nature of it seems to be resonating to everyone who experiences this book.”
Here is a chat with Kristin Arniotis about the important life lessons she wants to share:
Q: What does your son, Billy, think about having his own book at the tender age of seven?
Kristin Arniotis: He likes it. We have had him autograph quite a few of them. He asks me – why are people buying this book, it’s a book about me? His nickname is Billy Bug, so he calls it the B-Bug book.
Q: What is Billy like?
KA: My son is a patient kind, loving and giving boy, and he is such a gift to us.
Q: How are your three other sons with Billy?
KA: My son Nicky, 4, is three years younger and having younger siblings opened up so many doors for Billy because social skills are a problem and this forced interaction. It took Billy a while to want to pay attention to his younger brother. But we never had to force love – he’s always been loving, kind and sweet. He loves helping me get things I need for his twin brothers.
Q: There are parents, children and people in the community who look at a child with autism, or other special needs, and want to steer clear of them. How do you respond to that?
KA: Every child has issues. My son, Nicky, is a typical child and he has issues just like Billy, they are just for different reasons. Children with autism shouldn’t be judged or criticized – my three other kids who don’t have autism have their own behaviors and issues.
Q: What advice do you have for parents of autistic children going out for the day or on a longer trip based on your experience as Billy’s mom?
KA: Always prepare ahead of time. Billy has a specific drink he loves, a little bottle of water, pour out a third and put one third of white grape juice. If I go out with him, even though he is almost eight years old, we make sure we have a cooler with his drink. Nicky drinks milk and I can order it at any restaurant; with Billy there is less flexibility – so I always go prepared.
Q: Do you have other parental advice?
KA: Knowing your child and knowing his needs is major. Every child can have a tantrum. There is always a chance he’s going to cry about something that another child at seven years old won’t. But, I deal with it and I always remain very prepared.
Q: People can be judgmental – they can see an autistic child running back and forth, known as ‘stimming’ and it makes them nervous. Some parents force their children so stop these and other repetitive behaviors – how do you handle it?
KA: I have never ever, ever stopped him from doing that. We never knew at first and for many years why Billy ran back and forth but we never tried to redirect that or any of his behaviors. We felt like they were things he needed to do even though he couldn’t communicate that to us. Finally, years after he began running, he was able to tell us why he runs and his answer was ‘because I feel better.’ So, I’m so happy that we never tried to change that or redirect that. It was a need for him. I just feel that it’s something that he needed for his comfort level and his organization and I needed to allow him to do for his own wellness.
Q: Talk more about the behaviors that people may see as quirky.
KA: We have always shown love for his behaviors. When he couldn’t clap, he did a funny thing with both his hands we used to call ‘Shake it up’ and crack up. When he used to do his ‘eyeing, or looking at objects very closely, we would actually look at Billy that way, too, and we would all laughed about it together. It was always about focusing on the positive.
Q: The book is dedicated to your late mother, Debbie, how do you think she would have felt about the book?
KA: She knew about the book. She liked the book. She thought it was cute. I tried to get it published when she was still alive, but it was turned down. After my mom died we found a publisher.
Q: How do people get a copy of this book?
KA: From Amazon, Summerland Press or my Facebook page. The book will have its own web-site very soon.
Q: What is your hope for the book?
KA: Overall? My hope for the book is that it relays the message that Number One I don’t have an autistic son. I have a beautiful, loving, caring, sweet, child who also has autism.
Q: Please tell me more.
KA: Children like Billy shouldn’t be judged or excluded or thought about differently. They are children who want to play, love, have fun and make friends. And they all have all of the same feelings as your child. Just because they have autism it doesn’t make it different.
Q: Are there other issues that your book touches on?
KA: Sure. I would like for children to understand all of this as early as in elementary school. Then maybe it would eliminate bullying later on in their school life. Let’s all agree that all children have differences, but they are the same on the inside and let’s have more tolerance from everyone.
Q: What does Billy think autism is?
KA: I have never told him it has to do with development delays. To Billy and our entire family the definition of autism is: Amazing, Unique, Talented, Inspirational, Special, Miracle.
Debra Wallace is the mother of an eight-year-old son, who has autism, and who loves to see his friend, Billy Arniotis, during TV interviews, at local book signings, or just to hang out and play