Tag Archives: cerebral palsy

Jackson Ruscitti’s Amazing Journey

Like many young Westporters, Jackson Ruscitti loves playing soccer.

Unlike many, he has cerebral palsy.

That’s a challenge. As the physical gap with his peers grows, it’s hard for the 12-year-old to keep up with his able-bodied friends. (He does play in the Westport Soccer Association recreation league.) But programs for youngsters with developmental delays are not appropriate either.

Fortunately, there is also CP Soccer.

Jackson Ruscitti

In the fall of 2017 Jackson’s mom Elizabeth heard of a non-profit. Its mission was to build a nationwide league for kids with cerebral palsy.

There are already 5 US teams, in New York, New Jersey, the Mid-Atlantic, South Florida and Houston. Another 4 to 6 teams are planned.

Jackson travels a couple of hours, to Clifton, New Jersey. But he’s learning new skills weekly. His teammates include a boy who plays for his high school freshman team, and another on the US Paralympic soccer squad.

Jackson also attended his first-ever sleepaway camp, at Clemson University. (Coincidentally, the head coach of the Tigers’ national Top 10 team is Staples High School 1979 graduate Mike Noonan).

Elizabeth calls that experience “life-changing.” Many of the youngsters had never spent time away from home — or met another child with the same disability. The environment was safe, fun and totally accepting. No one had to hide his arm, or try to disguise a limp.

But that was just the start. In March Jackson helped represent the US in the first-ever international tournament for kids with CP: the Friendship Cup in Dublin, Ireland.

A U-14 team of 17 kids was formed. They came from around the country, and played squads from Ireland, Scotland, Northern Ireland and England. They were accompanied by Kevin Hensley, a US Paralympic soccer team captain.

It was an amazing experience — and not just because the former strangers came together to ring up 3 wins, 3 ties and 3 losses.

Coach Ash Hammond, wrote down his thoughts after the trip. He tried to put into words what the tournament meant to him. He wondered:

Was it the training sessions on Wednesday and Thursday where everyone met for the first time and we all realized that we had a TEAM?

Was it the USA Flags everywhere, and realizing that you were representing your country, not just playing soccer?

Was it seeing one of the coolest signs EVER on the side of the field- “Soccer For ALL”

Was it the new friends we have made all over Ireland, England, Scotland and Northern Ireland?

Was it that the national team players back in the US kept posting “support messages” recognizing our young charges as the future of US CP Soccer?

Was it our crazy (GREAT) sibling cheering section?

Was it that we made history becoming the first US U-14 CP team ever to play a game, let alone an international game?

Jackson Ruscitti is in the back row, 2 to the right of the goalkeeper.

Then the coach offered a personal shout-out to the young Westporter:

Was it Jackson, who offered to go in goal when his team needed it and pulled off a magnificent save, along with his incredible effort in the field in the other games, or his crazy good split passing that we covet yet see so rarely in the youth game?

Then the coach revealed what really was his favorite part of the week.

It was all of those things and much more, but mostly it was the knowledge that we non-CP players, coaches and families were in the minority this weekend.

That the minority got to watch the majority, unabashed; perform, enjoy, revel, laugh, make friends, play, score, pass, tackle, dance, be recognized for their greatness, win, lose, tie, be happy, be upset, be exhausted and most of all seeing so many be among others like themselves for the first time.

Finally it was seeing our amazing children have a week like none other that they richly deserve, and giving US much joy along the way.

Jackson is already looking forward to his next camp at Clemson.

And 2 of his new mates from Ireland have signed up to go too.

(For more information, or to make a donation to support CP Soccer, click here.)

For Wyatt Davis, State Budget Cuts Literally Hit Home

Wyatt Davis got the most out of Staples High School.

He hosted a weekly radio show on WWPT-FM. He was an avid member of Best Buddies and the Photography Club, and the football team’s most ardent fan. Nearly every staff member and student knew him — and all loved him.

Not bad for a young man who — because of cerebral palsy — cannot speak, or use his extremities.

Wyatt Davis in 2011, at the WWPT-FM controls.

Wyatt is 21 years old. That’s the age limit for high school special education services. He graduated last June (while also attending community college).

In normal times, he’d move to a program like STAR. Like similar organizations around the state serving those with intellectual/developmental disabilities, its services would help Wyatt transition to the “real world.”

But these are not normal times.

In the absence of a state budget, Wyatt — and over 200 recent high school graduates like him — have been stranded in a hellish limbo.

“Wyatt uses a wheelchair for mobility, and needs 24/7 assistance to meet his basic health care needs,” says STAR executive director Katie Banzhaf.

But, she adds, “I don’t think of Wyatt that way. To me and all of us who know him, we see an amazing young man who loves photography (he takes great photos with adaptive devices), loves his iPad, has a great sense of humor, and will absolutely charm his way into your heart.”

Wyatt Davis and his friend Taylor Harrington, watching a Staples baseball game.

Through STAR — which he became involved with last year — he has attended photography and music classes, and engaged in many activities.

But state legislators have not yet passed a budget for the fiscal year that began July 1. Governor Malloy’s interim budget cut funding for places like STAR by up to 18%.

Now Wyatt mostly stays home.

His parents have paid privately for STAR services, 3 days a week. They have other pressing needs — including Wyatt’s other health expenses, and a daughter in law school — and cannot afford that for much longer.

A little snow doesn’t stop Wyatt Davis from enjoying the slopes.

The other option is for his father or mother to quit their job, to stay home with Wyatt. But that won’t help him grow, develop and make friends.

“We’re trying to raise awareness and funds from the community so Wyatt can return to STAR for at least 1 to 2 months,” Banzhaf says. “That will give us time to find additional resources, so he can stay as long as he needs us.”

United  Way of Coastal Fairfield County — and an anonymous donor’s contribution of $1,000 — have ensured that after major hip surgery last month, Wyatt can join STAR again next next week.

The organization hopes other neighbors and friends will help too. To donate — or for more information — call Peter Saverine, STAR director of philanthropy, at 203-846-9581, ext. 302, or email psaverine@starct.org.

 

Taylor Harrington Speaks Strongly For Those Who Can’t

For some Staples High School students, club rush is a chance to grab candy, as organizations try to lure in new members.

For Taylor Harrington, it was a life-changing event.

As a freshman in 2011, she discovered Best Buddies. The organization — which fosters 1-on-1 friendships between students with intellectual and developmental disabilities, and their classmates — grew to be a passion.

As a junior, Taylor was paired with Wyatt Davis. Though they shared similar interests — sports, music and food — and had attended Coleytown Elementary and Middle Schools together, they did not know each other well.

Their relationship grew quickly. They attended Staples games together. Wyatt invited Taylor out on his family’s boat. They attended a “Walk the Moon” concert in New York.

Wyatt Davis and Taylor Harrington, watching a Staples baseball game.

Wyatt Davis and Taylor Harrington, watching a Staples baseball game…

Their friendship has lasted beyond high school. Wyatt has gone to Penn State — where Taylor is a sophomore — for a football game. She showed off the school she loves, and hit the Waffle Shop for eggs and pancakes.

For years the 2 friends have sat in Wyatt’s kitchen, watched his dad Brett cook, and chatted. “He makes the best food!” she says.

Wyatt — who has cerebral palsy — communicates using an iPad attached to his wheelchair. He has a great sense of humor, Taylor notes.

“I love being Taylor’s friend,” Wyatt — now a student at Gateway Community College — says by e-mail. “She makes things easy when we hang out. When she comes over, she’s like part of my family. She is incredibly genuine and sincere.”

“We are all way more similar than we are different,” Taylor notes. “Too many people judge Wyatt and other people with disabilities just because of their medical condition.

“That’s not fair. Wyatt doesn’t let his disability define him, which I love. Any time I think I can’t do something, I think of Wyatt’s attitude. I tell myself, ‘I can do this — just maybe not in the easiest way, or the first way I think of.'”

...and on Wyatt's parents' boat.

…and on Wyatt’s parents’ boat.

Last year — her first in college — Taylor realized how much she missed Best Buddies. She noticed that fellow students who had not gone to school with students with disabilities felt disconnected from them. She also wanted to learn more herself.

That led her to minor in disabilities studies. This semester she’s taking a course with a blind professor. She’s learning how blindness affects the woman’s life, and is asking questions she could not get from a textbook.

Last year, a Deaf Culture class helped her understand hearing impairments as a difference, not a disability.

Taylor’s major is advertising. Her other minor is entrepreneurship. All of those subjects converged in September, when Project Vive — a small State College-based start-up that makes communication devices for people with cerebral palsy and ALS — hosted a poetry night at their workspace.

A 70-year-old woman named Arlyn shared her poetry with an audience, for the first time ever. Because her speech is slurred, she used Project Vive’s Voz Box.

Project Vive's Vox Box.

Project Vive’s Vox Box.

The Box is a speech generation device. It’s customizable — Arlyn operated it with her foot; others use a hand — and at $500 it costs far less than the $16,000 average of similar devices.

Taylor was excited to hear Arlyn — and eager to help.

Soon, she was hired as Project Vive’s marketing intern. She runs social media accounts, promotes events, and creates innovative ways to expand the company’s network of supporters.

She also runs an Indiegogo campaign.

That’s necessary, because even though the Voz Box is a lot less expensive than other speech generators, it’s still out of reach for many.

Her goal is $10,000. But she has less than 24 hours to reach it. The campaign ends tonight (Thursday, December 8) at midnight.

Taylor Harrington, Wyatt Davis, Arlyn the poet and Project Vive have one voice. Through it, they speak loudly and clearly: “Please help!”

Click here to contribute.