Building a community: Young boy's journey inspires foundation for autism

Eagle-Tribune - 3/16/2024

Mar. 16—It's a gray day in January, and Jack Fortin, 14, and his younger brother, James, bounce from the school bus, pass the day-old snowman that Jack made — Flakey — and bound into their Windham home.

Jack takes a seat near his dad in a corner by the kitchen with a view of the snow-filled backyard.

Most weekdays at this time, Jack and James are rehearsing "Frozen," their Windham Middle School drama club production.

But today's a Wednesday, their afternoon off.

Jack listens as his Dad, George Fortin, says that the family is lucky to have learned about Jack's autism early, before the age of 2.

They are fortunate because the family immediately enrolled Jack in early intervention programs, including Easterseals speech, occupational, physical and behavioral therapies.

Jack worked the programs.

Over time and through continuing care and effort, he learned to speak. To pull away from disorientation and toward predictability, to trade meltdowns for interaction.

Jack's successes inspired his parents to establish a help organization, the JT Fortin Foundation for Autism. It's a force for positive change.

It funds projects that promote safety for people with autism and awards grants to families with members who have autism.

The Family Grant Fund's mantra is, "Do you know Jack?"

Jack wears a colorful T-shirt this afternoon, the words "Disney Cruise Line" splashed over the front. It's from a trip the family took last April during school vacation.

The family cats, named for "Star Wars" characters, lounge and roam nearby. Leia, all energy and curiosity, introduces herself to visitors, and Ellie, doing what she does best, is chilling.

The other day, Ellie stretched out and snoozed in Jack's lap as he gripped a video game's controls and feverishly clicked away, says James, 12.

A day in the life

Jack is a focused and busy teen with a mind for details.

He announces a few self-related facts when the topic of swimming lessons comes up. How it is a valuable, even lifesaving skill for people with autism and how Jack is now on a swim team.

"My first swim meet was on Oct. 28, a Saturday, and I had my second one on Jan. 13, which was my grandmother's birthday."

Jack speaks with cadence and humor. He stresses the first syllable, grand, in grandmother, and otherwise declares his accomplishments with a touch of bemusement.

He likes coincidence.

He likes humor, including cartoon explosions — think Wile E. Coyote.

He likes cooking, math and science, and is a good listener. He asks questions if he doesn't understand what someone is talking about.

Sometimes, Jack raises his hand to ask a question.

When he hears the expression "in a nutshell" emerge from a snippet of conversation, he wants to know what that means, something being in a nutshell.

His father explains that it's a short description, one that gets to the point.

Jack nods his head. He gets the meaning.

He likes order and routine in his day, and gets an early start on both by hopping out of bed to his alarm clock's call at 6 a.m. and feeding the cats.

What about this morning?

"I had a chocolate chip muffin and let the dogs out and brushed my teeth. Then me and James went outside to wait for the bus."

In art, the class drew an imaginary creature.

Jack's creature was part bull and part dog. A dog with hooves and horns.

In chorus, they practiced "How Far I'll Go," from the Disney movie "Moana," and in language arts, they had to build an argument for or against homework.

Jack argued for homework, since it reinforces whatever it is that they are studying.

"For lunch, we had chicken in a wrap," Jack says. "It was delicious."

Period six was cooking, and they made lemon bread.

Period eight, Jack had specialized instruction, speech.

He's also preparing for math and science quizzes at the end of the week.

In science, they are learning the difference between reactions.

Endothermic reactions absorb energy; exothermic reactions absorb it, he says.

"When I am making a pizza, it is absorbing the energy," Jack says. "When you put out a fire, outside, the smoke coming out — that is a type of exothermic reaction."

George smiles.

Jack's progress has been a godsend.

Answers and guidance

George is a stay-at-home dad. Jennifer is the breadwinner. She travels during the week in her work as a software instructor.

Jack is the third of four boys.

A decade ago, George more than had his hands full. Two children were in their early elementary years, George IV and Joey, and two in strollers, Jack and James.

Until 18 months, Jack seemed typical. But he didn't speak, was having trouble saying mama and avoided eye contact.

Maybe he was having difficulty hearing?

No, his hearing tests came out fine.

The pediatrician suggested that they see a neurologist. Within 10 minutes, the doctor, an old hand at working with children, told them that Jack had autism spectrum disorder.

The parents enrolled Jack in Easterseals therapies.

He didn't make a lot of progress right off. He still wasn't speaking.

One day, George took him to a program in Dover for therapy with a woman named Jolene. Her approach was less clinical and more engaging.

"Let's let him explore the room," she told George.

There were slides and carts and ball pits in the room.

Jack was still not communicating at the time. The therapist allowed Jack to figure out what the toys and play sets were there for, and after 25 minutes exploring the room with her, he was pointing at things and grunting.

He was communicating with her in ways that he had never communicated with his parents.

"And I'm in tears," George says. "I had never seen anything like this before. I was on the phone with my wife saying you are not going to believe what I just witnessed."

Sharing their knowledge

Jack's six to nine months with Jolene, before she moved to Florida, saw further progress.

It established a foundation for Jack to build upon and a springboard for more progress as he continued, and continues, with therapeutic learning and education in traditional settings.

It revealed to George and Jennifer what Jack's learning needs were and how sensory issues or other disruptions led to disarray.

The Fortins also learned about Jack's education rights from a parent who works with special needs children and has three kids with autism.

Public schools that receive federal funds are required to put in place plans to meet a child's special health needs, under laws established by the Americans with Disabilities Act and other legislation.

Jack has received the school therapies spelled out by his IEP, individualized education plan.

Going back to around 2014, at night, George and Jennifer would tell each other about articles they had read about promising therapies or glaring needs for children with autism.

They decided to pay forward their good fortune and do what they could to help families on their autism journey.

They started the JT Fortin Foundation in 2015. Up until the pandemic, the foundation held two major fundraisers, a dinner and raffle and a golf tournament.

Over the years, it raised about $50,000 a year, over $350,000 in total.

It's an all-volunteer organization with an 11-member board and donates the money it raises for projects, programs and grants.

"The biggest priority for me was safety — how do we keep these kids safe?" George says.

George and Jennifer knew that people with autism are at a greater risk of death from drowning.

Through the Fortins' oldest son, George IV, they learned about Swim Angelfish, an adaptive swim program that teaches special needs kids, including children with autism, how to be safe in the water.

The Fortin Foundation has awarded scholarships for children with autism to take swimming lessons there.

Jack took Swim Angelfish lessons, as well, though the Fortins paid for them out of pocket.

Providing the right tools

Another safety-related initiative the foundation supported was first responder training.

They learned about this need through a family friend who told them the story of a young person with autism who was arrested and jailed for 72 hours.

This person had been among others at the scene of an extinguished fire that had been set by an arsonist.

A fire investigator interviewed a boy who had been chuckling in the crowd, and said to him, "You must like fires."

There is a trait, echolalia, that some people with autism have that causes them to repeat what other people say to them.

This boy had nothing to do with the fire but ended up repeating what the fire investigator said to him.

The Fortin Foundation contributes to first responder training provided by an organization from Norwood.

Also, the foundation was a leading contributor to Griffin Park's new inclusive playground, a sensory-rich environment designed for children of all abilities.

The foundation was also an important contributor to the Windham Center School's Chillville multisensory room. It was established for all students to help them center themselves and be better prepared to learn.

While the foundation has yet to restart the annual dinner and raffle and golf tournament, it continues its annual Jack's Family Grant Fund for families that include members with autism and have financial need.

The fund typically receives $4,000 to $10,000 a year in online donations.

Every April and May, dozens of families apply for grants.

The foundation reviews the applications, and, in June, 10 to 12 families receive grants of between $750 and $1,200.

Autism changes the dynamic in families, George says.

The stress can be enormous, moments of meltdowns terrifying for the person with autism and brutal for family members to witness and contend with.

Yet, through planning, proactive therapy and endurance, the experience can teach people lessons about patience and care.

"I always joke with my other three boys that my patience for Jack, what I have learned from him, is to be more patient with them," George says.

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