Telling her story

Local author and blogger Carrie Cariello talks about her son’s autism, advocacy and finding a balance

Carrie Cariello with son, Jack, 14. Carrie blogs about the challenges of Jack’s diagnosis, but also the many bright moments in her family’s life.
Photo by Kendal J. Bush

Raising a child with autism is kind of like going for a boat ride in the wide open water. One minute it’s all smooth sailing — the radio is playing softly, no one is screaming a profanity — and all of a sudden, you come to an abrupt stop, like the anchor has dropped.

This is how Carrie Cariello, 44, describes raising her autistic son, Jack, in her Huffington Post blog: “Here is What No One Says Out Loud about Raising a 13-Year-Old Son with Autism,” published in April 2018. It is one of many that have been published in outlets such as TODAY Parents, the TODAY Show, and Parents.com.

Her blogs — posted each week on her website, CarrieCariello.com — tug at the heartstrings of parents who struggle with the conflicting emotions the come from loving someone with autism. In them, she writes candidly about her experiences with her blue-eyed son Jack, 14. Now more than six feet tall and 180 pounds, he’s getting older and still wants to know whether a restaurant serves Coke or Pepsi. (He prefers Pepsi.).

He also suffers from anxiety and needs to self- stimulate to keep himself in check. But he has a superb memory — if you tell him your birthday and ask him what it is two years from now, he’ll remind you what day you were born.

He is a dichotomy. He is complicated. He is loved.

“Did I tell you my son has autism?”

Cariello writes that she often repeats this phrase to servers, home repair technicians, and others she encounters in her orbit.

Her honesty is a source of power and strength to her readers, who relate to the trials, tribulations, and humor that autism brings to the Cariello family of Bedford, which includes four other children, ages 15, 13, 11, and 10, and husband, Joe. She writes about the emotional toll of autism while exposing the bright moments.

“His brain is wired in a different way,” she writes in ‘Here is What No One Says Out Loud About Raising A 13-Year-Old Son with Autism.’ “Because of this, he doesn’t read social cues or fully comprehend language or understand why you shouldn’t ask a woman if she’s pregnant.”

Her blogs serve as a companion piece to the two books she’s written about living with her son’s autism: “What Color is Monday? How Autism Changed One Family for the Better” (2012) and “Someone I’m With Has Autism” (2015).

Carrie has authored two books: “What Color is Monday?” and “Someone I’m With Has Autism.”

“What Color is Monday?” won its title when Jack asked his mother, “What color do you see for Monday?” In her first book, Cariello discusses Jack’s autism diagnosis and the family’s approach to embracing autism, rather than “conquering” it. Her sequel, “Someone I’m With Has Autism,” discusses how Cariello and her husband tell Jack about his autism and show his siblings how to love him exactly how he is.

Cariello also speaks about her journey with autism throughout the country. In 2015, she was a featured speaker in TEDxAmoskeagMillyard Women in 2015, where she wowed the audience with her ability to tell her story with poise, grace, and humor.

Pamme Boutselis, lead organizer of the TEDxAM event, met Carrie while doing research for an autism article. Mesmerized by her honesty and ability to expose her vulnerability in print, she said she knew that Carrie’s words would have a tremendous effect on the TEDxAM audience in Manchester, even though she had yet to hear her speak.

“When I connect in some capacity with people and am bowled over by them, I don’t forget them. I knew the impact Carrie’s words had on me would be replicated hundred-fold if she had the opportunity to speak at our event,” Boutselis said. “Her authenticity shines through and we all gain a better understanding and deeper empathy for their challenges and others, too.”

Charting a new course

A career as an author and public speaker in the autism community was not part of Cariello’s master plan.

Until her fourth child was born, Cariello had worked for 10 years as a marketing director for a construction company. Writing and public speaking comprised a major part of her professional life. Still, she never anticipated downshifting from her marketing career. Then suddenly her life took a sharp turn, thanks to Jack’s autism diagnosis.

“I have two moments which defined my start in writing. I ran the Boston Marathon for the Doug Flutie Foundation. A young man stepped in front of me on Heartbreak Hill and said, ‘I believe in you,’” she said. “It resonated so strongly. I bought a necklace that said ‘Believe’ on it. When Jack got really riled, and I couldn’t calm down, I would look at the necklace and think of the man that said, ‘I believe in you.’”

The second time took place at a hotel in North Conway where they met a dog. Since Jack was terrified of dogs, Cariello wasn’t sure how well the encounter would go. Would Jack become hysterical? Would the dog owner understand?

“The dog owner was kind and gentle. He met Jack where he was. It was eye-opening. People are willing (to meet you where you’re at) if you let them into your world a little bit,” she said.

Cariello jokes that she is a natural-born storyteller who picked up her aptitude for public speaking in graduate school. She remains humble about her ability to engage naturally with audiences about very personal experiences.

“I am just telling my story. This is how I feel about it. I don’t have to convince someone or relate research or prove a point,” she said.

She has traveled to speak to audiences locally and across the country, but said she prefers not to travel too often, because she says it throws off her schedule at home and can be lonely.

Amy Hamand, program director at Imagine A Way, an Austin, Texas-based charity that raises money to pay for therapeutic services for autistic children, invited Cariello to speak at the organization’s gala in 2017. She first heard about Carrie through her blog, which she shared to Imagine A Way’s Facebook page. Hamand’s boss saw it, loved it, and invited Carrie to speak at its major fundraising event.

“There are so many different stories and people talking about autism in different ways — what causes autism and how do you help kids with autism,” Hamand said. “She touched our donors because people want to give when they can really see what it is truly like to have a child with autism. She also tells it like it is. It is hard. It is OK to admit that it’s hard — it’s not disrespectful to our children.”

Cariello also describes her new career as a mindful choice. It allows her to juggle writing and speaking engagements, while also managing a busy family life. Aside from devoting time and attention to Jack, she’s built a schedule that can accommodate driving lessons, drumming classes, and hockey practice. She also finds time for self-care, which includes yoga and CrossFit.

A disciplined organizer, Cariello hates living in chaos and usually has dinner prepared before 10 a.m. That way, when Jack comes home before school, he can put the finishing touches on the meal.

“I am wired for organization. Focus on what you execute well and grow that piece of you,” she said.

Mapping out a new life

One gift that Jack’s autism brought the Cariello family was the idea that they could design their own lives. Jack’s diagnosis forced them to re-evaluate what is important and create a life that nurtures him and one another.

“No one wants to describe their life as busy, so why create a busy life?” Cariello said. “If you want a life best described as ‘mindful,’ or ‘peaceful,’ or ‘well-traveled,’ align your choices to meet it.”

Joe Cariello owns two dental practices, but finds time to taxi the other children to their after-school activities while Cariello tends to Jack. Cariello said that she has freedom to write and speak, which lights her up inside and fulfills her, while it also allows her to fit in the “cracks” of her family.

“Through Jack I found something — I have a voice in advocacy that I would have never stumbled upon any other way,” she said.

They’ve adjusted their parenting due to Jack’s limitations, as well. The family’s schedule cannot be so overwhelming that it disrupts Jack so they tend to bond together as a family around weekly outings and at meal times. Cariello said they are also more understanding of their other children’s’ strengths and have dropped some of the rigidity around expectations such as earning all As or excelling at every sport.

“They are all different thinkers. I have been able to meet them where they are,” she said.

Cariello is toying with the idea of writing a third book that speaks to the issues of marriage and balancing a family in a modern world.

“It’s about taking back the power that at some point we gave away; we thought other people should dictate who we should be,” Cariello said. ”When I design my own life, I can’t help but sit up a little taller — it’s a powerful notion for me.”

Making peace with a fuzzy future

In one of Cariello’s most recent blogs, she admits that as Jack gets older, it’s harder to envision what his future will look like. She used to compare the gaps in milestones between Jack and his brother Joseph, who is just a year older. In pictures, the two tall, dark-haired young men look very much alike. But the trajectories of their lives couldn’t be more different.

Joseph is now about to get his license to drive. He plays sports and has friends. Cariello says they don’t even “look like the same species” anymore.

In her latest blog, “The Peace We Make,” she acknowledges that the gap is widening.

Jack is getting bigger. This is getting harder. Will he sweep floors? Sort clothing? Collect recycling?

She writes: “It stings. That’s all I’m saying. Right now I am on the jagged side of the mountain, and I am holding on for dear life.”

But in typical Cariello fashion, rather than linger too long on what might be, she wishes her son happiness.

“And as the sun lowers in the cool sky, I just hope he looks my way even once. I hope he tells me something about his day. I hope he is happy.

Grief, hope, peace.

Grief.

Hope.

One day, peace.”

Krysten Godfrey Maddocks is a former journalist and marketing director who now regularly writes for higher education and technology organizations in New Hampshire and Massachusetts. Mom to 4-year-old Everett, she has lived in the Seacoast for the past 20 years.

Categories: Autism, Special Needs

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