Sharing Jack with the world
BEDFORD -- Raising five children in this day and age is no small feat. Raising five children when one of them has an autism spectrum disorder is an achievement on a whole other level.
Life isn't easy for the Cariello clan, and on some days it would be easy to complain, but Carrie Cariello has chosen to focus on how having an autistic child has changed her family for the better.
The 38-year-old Bedford mother has written a book that chronicles her often funny and sometimes poignant experiences with her family, including son Jack, who was diagnosed as autistic at age 2 in 2006.
"What Color is Monday?" began as a collection of Cariello's essays written for Autism Spectrum News' online blog. She began piecing the essays together and expanding on them, and within a few months, she had herself a book.
"When the material and inspiration is with you every day, it wasn't hard to do," she said.
In the book, Cariello explains that she can't point to any particular moment when she could say with certainty that Jack had autism. She just knew something wasn't right.
"His language wasn't developing normally," she writes. "He never pointed or gestured, and he had a difficult time managing solid foods. Jack rarely made eye contact, and he didn't babble or coo. He rarely seemed content in his own skin."
Finally, a pediatric specialist in Buffalo, where the family lived at the time, confirmed Jack's diagnosis of autism spectrum disorder, specifically pervasive developmental disorder. The next day, Cariello discovered she was pregnant with her fourth child.
Shortly after Jack's diagnosis, the Cariellos moved from Buffalo to Bedford, to be closer to family in an area where her husband, Joseph, could open a new dental practice. Once there, the Cariellos immediately enrolled Jack in the Bedford Early Education Program.
Carrie credits the program and Jack's teacher, Emily Blahnik, with much of his developmental progress.
Blahnik gave the Cariellos tips on managing Jack's behavior and was able to draw out some language from him. Soon, Jack was able to string two and three words together.
"She gave us our child back," Cariello said of Blahnik. "We were really floundering. It's hard to say where we'd be without all of that."
While Jack's chart says he has limited verbal skills, makes only variable eye contact and has difficulty with social cues, his mother knows he's more than a collection of test scores and medical jargon. Writing "What Color is Monday?" was a way to share the Jack she knows with the world.
"I resolved to never reduce Jack to a mere paper boy, but instead to spring him to life in all of his autistic glory, to really see him for who he is," she writes. "Because underneath all of the diagnostic testing and medical terminology was a beautiful, sweet little boy struggling to shine."
Cariello said her other children help Jack, now 9, do just that.
Joey, 10, Charlie, 7, Rose, 5, and Henry, 4, provide Jack with plenty of opportunity for social interaction, and, in many ways, treat him just as they would any other sibling.
"They push him more. They challenge him differently than I do," Carrie Cariello said.
Yet they're protective of their brother and are sources of frequent support as he navigates his world. For example, Jack's refusal to do karate turned completely around when he was able to attend class with his siblings. Jack, his mother said, grasps the concept of family.
"It is such a gift to see the way he is with the other kids," Cariello said. "There is no greater joy than hearing them dancing and laughing in the playroom."
Cariello said her public experiences with Jack have been overwhelmingly positive.
"I've never once in nine years been offended by people's reaction to him," she said. "I've been nothing but touched by the way people interact with him."
From the people who send license plates from across the country (Jack's newest passion), to those who extend small kindnesses to him every day, Cariello said, she's been impressed by Jack's interactions with the world.
"People are anxious to bridge the gap," she said. "I used to hold him close, to protect him, but as I peel my layers away and let him interact with the world, I know that it is a gift."
Cariello said the boy who assigns each day of the week a color and has very little cognitive flexibility has as much to teach the world as he has taught his own family.
"The irony is that, in my quest to help him reach his full potential, I'm actually reaching my own," Cariello writes in the book's final pages. "I am a far better mother because of him, and he has taught me so much."
The color of Monday is revealed at the end of the book, which is available on amazon.com.