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Autism

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Smithtown decked out for autism awareness. Photo by Alexandra Damianos

By Donna Deedy

The Town of Smithtown held a special Light the Town Blue ceremony in front of Town Hall April 3. Local families and members of the community living with autism joined with elected officials and town employees in the ceremonial kickoff for the month-long campaign. 

The ceremony was led by 21-year-old Brendan Lanese, who lives with autism, and his family. Prior to the lighting ceremony, Lanese invited any residents living with autism to assist him in illuminating the town in blue.

For the duration of April, blue lights and giant puzzle ribbons, the Autism Society’s official symbol for autism awareness, will embellish major landmarks throughout Smithtown, including Whisper the Bull, Town Hall, the Smithtown Parks and Highway Department grounds. 

In 2018, Councilman Tom Lohmann (R)and Parks Director Joe Arico helped to revive the tradition, which began for the first time in April 2015. Residents can pick up free blue light bulbs at the Town Council Office, 99 West Main St., Smithtown.

For more information, call 631-360-7621.

Hyunsik Kim and Erin Kang. Photo from Matthew Lerner’s lab

By Daniel Dunaief

This is the second half of a two-part series on autism research conducted by Hyunsik Kim and Erin Kang.

 Last week we focused on the work of Stony Brook University graduate student Hyunsik Kim, who used three criteria to diagnose autism. This week we will feature the work of another SBU graduate student in the Department of Psychology, Erin Kang, who specifically explored the types and severity of communication difficulties autistic children have. 

Words and the way people use them can offer clues about autism. Looking closely at pronoun reversals, speech delays, perseveration and 10 other characteristics, Kang determined that the number of features was a “powerful predictor of an autism spectrum disorder diagnosis.” 

In a paper published online in the Journal of Clinical Child & Adolescent Psychology, Kang grouped children from 6 to 18 years old into different subgroups based on their communication patterns and used a statistical method that allows the data to “speak for itself,” in terms of finding groups based on the patterns of how the communication difficulties are associated and to classify them.

According to Kang, heterogeneity is an important feature of autism spectrum disorder. “There has been a greater effort into understanding whether subgroups exist in ASD populations,” she explained in an email. By examining the atypical communication characteristics, she found four subgroups. These groups differed from each other, not only with autism, but on multiple measures, including the occurrence of anxiety or depression and with intellectual disabilities.

The communication difficulties occur at different rates within the autism children throughout Long Island that Kang studied.

Kang said her work has been “building on the previous literature,” although many of the previous studies focused on characterizing autism for children who were younger than 6.

“There are few studies on specific symptoms (e.g., stereotyped speech) across the body of literature,” she explained, adding that she’s passionate about exploring the trajectory of development over time with or without intervention. 

She and her co-authors, Ken Gadow and Matthew Lerner, who are also at Stony Brook University, are working on a follow-up paper that attempts to explore how changes in the pattern of communication challenges examined in the paper relate to other clinical aspects and outcomes.

Kang believes her results have clinical implications that will help in understanding autism. Atypical communication features are a good predictor of diagnostic status. “This can provide an advantage in assessing social communication profiles in autism,” she said. “It’s hopefully valuable in a low-resource setting.”

Parents might be asked 13 questions on a checklist, which could serve as an initial screening for more comprehensive autism evaluations, rather than a multiple checklist that could take a while for parents to complete. The different categories had specific features that distinguished them. 

“There’s been quite a bit of work in the speech and language field,” said Lerner, an associate professor of psychology, psychiatry and pediatrics in the Department of Psychology at Stony Brook University and Kang’s mentor. “This approach allowed us to ask about some of the specific types of language differences we often see.”

Lerner said what Kang found is that specific characteristics do tend to cluster together in “interesting and unique ways that can tell us more about the communicative phenotype of autism.”

One of the groups, which she called “little professors,” had speech patterns with considerable perseveration. In perseveration, a person repeats a word or phrase, even when a question or stimulus that might elicit that phrase no longer continues. As an example, Dustin Hoffman in the movie “Rain Man” frequently repeated the number of minutes until Judge Wapner was on TV.

“These kids would benefit more from a group-based social skills intervention that specifically integrated interacting with peers,” Kang said. People in this group had the highest percentage of wanting a friend, but difficulty with relating to peers.

“They will benefit especially from interventions that help them build skills in interacting with peers,” she explained.

She also suggested that the best way to make a reliable diagnosis is to collect as much information as possible, which could include observations and electrophysiological data.

Kang acknowledged that some of the responses from the parents or teachers of people with autism contain bias. “There can be a lot of potential especially in terms of these subjective measures,” she said.

Indeed, through Lerner’s lab, Kang has been trying to include more uses of neurological measures and other methodology that is less subject to biases.

“Hopefully, by looking at these more objective measures, we can help integrate information from these different levels,” she said.

A resident of East Northport, Kang lives with her husband, musician Sungwon Kim, who works as a freelancer on Broadway musicals. The couple, who have a young son, met in Boston when she was working at Boston Children’s Hospital and he was a student at Berklee College of Music. 

Kang’s first experience with autism was in high school, when she acted as a mentor to a second grader. When she entered college at the University of California at Berkeley, she studied molecular and cellular biology and psychology.

Lerner said that Kang is a “truly remarkable young scholar” and is “among the best I’ve seen at her stage to be able to look at her clinical experiences, which drive the questions that strike at the core of how we understand and treat autism.”

Lerner appreciates how she is driven to understand autism from neurons in the brain all the way up to the classification and treatment.

“She is somebody who is completely undaunted by taking on new questions or methodologies because she has an idea of what they’re going to mean,” Lerner said. “She has worked with [autistic children] and has tried to understand where they are coming from.”

Kang questions assumptions about what autism is, while also exploring its development.

“She is able to see and discover clinical strengths that manifest in the kinds of questions she asks,” explained Lerner. “She is a part of the next generation of where my field is going, and I hope we can catch up to her.”

Kang appreciates the work-life balance she has struck on Long Island, where she feels like the pace of life is “quiet and calm during the week,” while it’s close enough to New York City to enjoy the cultural opportunities.

From left, Hyunsik Kim, Associate Professor Matthew Lerner and Erin Kang. Photo from Lerner’s lab

By Daniel Dunaief

This is part one of a two-part series on autism research conducted by Hyunsik Kim and Erin Kang.

If someone in a family behaves in ways that are difficult to understand, the family might look for a support group of people with similar characteristics, visit a doctor or seek to document and understand patterns.

Finding a doctor who has seen these types of behaviors, speech patterns or actions before could provide comfort, as the physician may either engage in a course of treatment or provide context and understanding for the current behaviors. The doctor may also offer advice about any likely changes in behaviors in the near or distant future.

For researchers, understanding a range of symptoms, some of which might be below the threshold to meet a specific diagnosis, can lead to a more specific awareness of a condition, which could help guide patients toward an effective treatment.

Hyunsik Kim and Erin Kang, graduate students in the Department of Psychology at Stony Brook University, recently published papers examining autism, hoping to get a more specific understanding of subtle differences and symptoms.

Kim was looking for a better way to conceptualize autism. He used advanced statistical methods to compare three theoretical perspectives to find the one that best characterized the symptoms.

“According to my study, autism is not an all-or-nothing phenomenon, but is dimensional [and is] comprised of three related spectra of behaviors,” he explained. 

Researchers can characterize everyone’s autism symptoms through a combination of levels in each domain.

Each of these three areas can range from very mild to severe.         As an analogy, Kim suggested considering the quality of being introverted. A person can be mildly, moderately or highly introverted, which offers a continuum for the dimension of introversion.

In a dimensional approach that involves exploring these three different categories, researchers can get a better understanding of the symptom profiles.

“For decades, people thought of autism as purely categorical,” said Matthew Lerner, an associate professor of psychology, psychiatry and pediatrics in the Department of Psychology at Stony Brook University. “You either have it or you don’t. In fact, autism was thought of as the easiest diagnosis to make.”

Kim, however, has “a goal of answering the fundamental question: what are we talking about when we’re talking about autism?” Lerner said. “Slowly, autism has morphed from the most categorical to the most dimensional. Literally, people talk about the spectrum when they talk about autism.”

With a dimensional approach based on levels of the three major domains for diagnosing autism, Kim suggested that researchers and doctors could better understand people who fall just below the current diagnosis for autism.

“It’s especially important to identify individuals who show a borderline range of symptoms, who barely fail to meet the diagnostic criteria of a given disorder, and provide them with appropriate treatments,” Kim explained.

Ideally, he hopes a dimensional approach incorporates the severity of symptoms into the current diagnostic system to promote better treatment procedures and outcomes.

Kim recognized that he could have just as easily created a dimensional approach that incorporates a greater number of criteria. His statistical analysis, however, revealed that the three dimensions provide the parsimonious explanation about autism symptoms.

Kim analyzed data from a parent questionnaire. He recognized that self-reporting by parents may underestimate or overestimate the severity of symptoms. He believed the over and under estimate of symptoms likely “evened out.”

Lerner suggests this multidimensional approach has numerous implications. For starters, it can help capture more of the types of symptoms in a diagnosis. It can also highlight the specific area of autism a clinician might want to target.

“We should be focusing on the factors that are most relevant for the individual and which are getting in their way,” Lerner said.

Treating autism broadly, instead of focusing on specific symptoms, may be “misguided,” Lerner added. A more specific characterization of autism could also help advance the field of neurogenetic research. “With more contemporary genetic analysis, we can use findings like this as a road map for what those genetic differences mean,” he said.

For his next step, Kim hopes to expand this work to observational data, adding that to the existing pool of information from parental questionnaires.

“People go on a home visit and take video of autistic kids interacting with others,” Kim said. “We can have some people code their behavior.”

More broadly, Kim would like to answer fundamental questions about the classification and conceptualization of mental disorders by using advanced quantitative modeling and other data-driven approaches. He believes a factor may represent a person’s vulnerability to developing a specific mental disorder.

A high level of this factor, combined with life stressors or adversity, would make it more likely that a person develops a disorder. As someone who studies psychology, Kim said he is well aware of his own emotional patterns and he tries to use his training to help himself cope.

He is not particularly comfortable doing public speaking, but he tells himself that whatever anxiety he feels is normal and that his practice, knowledge and expertise should allow him to succeed.

A resident of Middle Island, Kim lives with his wife Jennifer. The couple has two young children. Kim describes his wife as a “really good” amateur baker, who bakes cakes, muffins, cookies, macaroons, chiffon cakes and more. He has encouraged her to start her own YouTube channel and one day they hope to open a bakery that is online and offline.

As for his autism work, he hopes the dimensional approach is “incorporated into the assessment stage so that individuals do not merely receive a diagnosis, but are informed of their unique symptom profiles, so that clinicians can take them into consideration.” 

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Andrea Lambe, right, of Port Jeff, poses with Sen. Tim Scott and fellow parent with an autistic child, Karla Peterson, in Washington. Photo from Andrea Lambe

By Amanda Perelli

A Port Jefferson resident joined a contingent that trekked to Washington, D.C., to advocate for facilities that offer therapeutic treatments for mental health disorders like autism.

Andrea Lambe headed to Capitol Hill in May and spoke with lawmakers on the role of therapeutic treatment programs and to call for improvements to the credentialing process for therapeutic schools and programs.

Her son, Joseph, has severe autism and lives at the Anderson Center for Autism, located in Staatsburg. Lambe drives about three hours every weekend to see him, because places like these are rare around the country.

“He’s in a good place that allows all kinds of involvement,” Lambe said. She has gotten involved beyond caring for the needs of her son, joining an advocacy group that the Anderson Center formed for parents. 

The center is a member of the National Association of Therapeutic Schools and Programs, an organization whose mission is to serve “as an advocate and resource for innovative organizations which devote themselves to society’s need for the effective care and education of struggling young people and their families,” according to its website.

“NATSAP members join together to have a voice in Washington, D.C., because we believe it’s imperative to educate legislators on the importance of tackling mental health issues including autism,” said Megan Stokes, executive director of NATSAP, in a statement. “We explained to those on the Hill how NATSAP programs help fill the gap of mental health programs for adolescents and young adults that are not being met by publically funded programs.”

Lambe met up with some two dozen other people from different therapeutic schools around the country. 

“We discussed the role of therapeutic treatment programs in today’s society and how these programs benefit at-risk adolescents and young adults confronting serious and life-threatening mental health issues including autism,” Lambe said. “We emphasized the stringent credentials required of those facilities that are NATSAP member programs.”

She met with U.S. Sen. Kirsten Gillibrand (D-New York) and Rep. Lee Zeldin (R-Shirley) as part of a 15-member delegation from NATSAP as well as Rep. John Faso (R-New York), Rep. Mark Sanford (R-South Carolina) and members from the offices of Sen. Lindsey Graham (R-South Carolina), Sen. Tim Scott (R-South Carolina) and Rep. Mark Walker (R-North Carolina). 

“I loved it because I feel like we are so welcome because it’s such a bipartisan issue,” Lambe said. “Everyone can relate to it. I almost feel like they are welcoming us in to tell our stories. I was shocked and really amazed with how much time they spent with us and how, Democrat or Republican, they all seemed to be genuinely concerned and gave us a lot of time to tell our stories.” 

Lambe said Faso agreed to tour the Anderson school and see the environment. 

“No one really knows how to deal with this population and it just kind of gets scrambled and tossed aside sometimes,” Lambe said. “The big problem is when he turns 21 and the school district says goodbye. There is very limited housing — another huge issue for the aging autism population.”

The NATSAP delegation discussed its desire to promote legislation that improves the credentialing process for all therapeutic schools and programs in North America, according to a press release.

Smithtown Town Hall. File photo by Rachel Shapiro

Smithtown Town officials plan to go blue next week to celebrate April as national autism awareness month.

The Town of Smithtown will hold a Light the Town Blue ceremony April 9 at 5:30 p.m. in front of town hall, located at 99 W. Main St. The event will feature Autism Speaks advocate Kathleen Lanese, along with her husband, Rick, and sons, Kevin and Brendan.

“I’m so proud that Smithtown will yet again, join with towns and cities across the globe in support of autism awareness this month,” said Smithtown Supervisor Ed Wehrheim (R). “We as a society must do more to bring attention and understanding to this increasingly more common neurological condition, affecting development in our children.”

Throughout April, giant blue puzzle pieces and blue lights will mark major landmarks throughout the town including: the statue of Whisper the Bull at the intersection of West Main Street/Route 25 and Route 25A, town hall, and the Town of Smithtown Parks and Highway Department grounds on East Main Street in Kings Park.

Councilman Tom Lohmann (R) and Joe Arico, Smithtown park maintenance director, helped to revive the tradition that started in April 2015. Lohmann will be distributing blue light bulbs to residents on a first-come, first-serve basis, out of his office this week and during the ceremony.

Matthew Lerner, far right, with his lab group at Stony Brook University. Photo from Matthew Lerner

By Daniel Dunaief

An actor draws in members of an audience, encouraging them to understand, appreciate and perhaps even become sympathetic to a world created on a stage. The process of creating scenes for the actor, however, can also change his or her world off the stage.

A team of scientists from Vanderbilt University, University of Alabama at Tuscaloosa and Stony Brook University recently received $3 million in funding from the National Institutes of Mental Health for four years to study how participation in a theater production can help people with autism spectrum disorders.

Matthew Lerner. Photo by Graham Chedd from the Alan Alda Center for Communicating Science

“Theater is a venue for learning and gaining skills,” said Matthew Lerner, an assistant professor of psychology, psychiatry and pediatrics at the Department of Psychology at SBU who is leading the Long Island part of a study that will involve about 240 participants from age 10 through 16. “The process of putting on a play with others and being able to successfully produce and perform that has key benefits to learn and practice.”

Called SENSE Theatre (for Social Emotional NeuroScience Endocrinology), the shows were created by the project leader, Blythe Corbett, an associate professor of psychiatry and behavioral sciences and psychology and investigator at Vanderbilt Kennedy Center, who herself performed in stage plays before pursuing her scientific career.

Corbett writes the plays, which have themes she believes are important not only for autism but also for the general public. The topics include acceptance, belonging and diversity and offer a current of core ideas that are “part of having a condition that is unique,” she said. The plays, which typically have about 20 characters, include music and last about 45 minutes.

Tiffany Adams and Jane Goodwin participate in the SENSE Theatre program. Photo by Steve Green, Vanderbilt University

Corbett explained that the experience uses theater as a platform for teaching fundamental areas that could help people with autism spectrum disorders, including reciprocal social communication, flexible thinking and behavior and imagination.

“It also gives [the participants] an opportunity to be exposed to social situations and to engage with others in a safe and supportive environment,” she said. “They can be John today and Henry tomorrow, which allows them to expand their repertoire in a playful, fun way” which, she hopes, might help them assimilate lessons when the program ends.

Corbett has been developing SENSE Theatre for nine years. This specific multisite project will allow her to see how transportable this program is to other locations, where other investigators who have not been involved with this before can employ it with other participants.

The investigators, which include Corbett, Lerner and Susan White at the University of Alabama, will monitor the participants through psychological testing, social interaction and research EEG, or electroencephalography. This is a noninvasive way of monitoring electrical activity in the brain that involves placing electrodes on or below the scalp. The EEG testing takes about 45 minutes.

Participation is free, although members, who go through a screening process, need to contribute to the research program by completing the evaluations.

The theater program has a control study, calling Tackling Teenage Training, in which participants will “address some of the challenges of being a teen,” which include dating and puberty, knowing how to know if somebody likes or doesn’t like you and how to express desires or interests appropriately, Lerner said.

Savannah Bradley participates in the SENSE Theatre program. Photo from Steve Green , Vanderbilt University

Corbett chose to work with Lerner because of considerable overlap in their interests in using performance to provide clinical help for people with autism spectrum disorders. Lerner “has a very strong interest in theater and is able to understand the core approach” to the training and shows as a form of intervention. He is an “engaging, charismatic individual who is extremely hard-working” and is a “really good choice in terms of harnessing his energy and intelligence.”

Indeed, Lerner and Karen Levine, a licensed psychologist and the co-author of “Treatment Planning for Children with Autism Spectrum Disorders,” developed a model in 2004 for youths with disabilities to work on social skills called Spotlight, which utilized techniques of theater games and dramatic training. Spotlight is a program of Northeast Arc, a human services organization founded in 1954 and based in Massachusetts.

The Spotlight efforts started with nine students and has expanded to include hundreds of families each year.

In early high school, Lerner met someone who would change his life. He was having dinner with the family of a friend of his younger sister’s when he noticed a boy, Ben, playing on his own in another room. Lerner asked if he could play with Ben, who was 2 at the time and was running a car back and forth across the top of a toy playhouse.

Lerner mirrored what Ben did. “He looked at me curiously and kept doing what he was doing,” Lerner recalled. “I followed him around for over two hours.”

A scene from a performance by SENSE Theatre. Photo by Steve Green, Vanderbilt University

Up to that point in his life, Lerner thought the experience with Ben was “the most fascinating two hours of my life.” He had made a connection in which he “loved the joy and challenge of trying to meet him where he was, rather than behave in a way that was consistent with what the world expected.”

Lerner studied philosophy and music at Wesleyan University. After earning his doctorate at the University of Virginia, where his dissertation explored why youths with autism experience social problems, Lerner worked at the University of Chicago and then moved to SBU in 2013.

A native of Swampscott, Massachusetts, Lerner lives in Port Jefferson with his wife Chelsea Finn, a pediatric nurse practitioner in the Stony Brook Hospital Emergency Room and a nurse practitioner at SV Pediatrics in Patchogue. The couple has a 4-year-old son Everett and a 6-month-old son Sawyer.

Lerner is looking for people who would like to participate in the study. They can reach out to him by phone at 631-632-7857 or by email at lernerlab@stonybrook.edu. The first set of students will begin working in the SENSE Theatre program this spring and summer.

Corbett said the participants aren’t the only ones who benefit from the program.

“The overwhelming sentiment from those who come to see the performance is that it changes their perception of what it means to have autism,” Corbett said. After the show, some of the audience members “ask who are the children with autism.”

Parents of the actors are pleasantly surprised by the things their children are able to do, which exceed their expectations. “In one of our previous studies, parents reported that their stress went down” during the program, she said, “which appeared to be in response to the child participating in intervention.”

WWE Wrestler and Smithtown resident Mick Foley poses for a photo with the Castoro family during his event Sept. 7 where he raised funds for autistic families affected by Hurricane Harvey. Photo by Kevin Redding

Wanting to help in the wake of Hurricane Harvey, wrestling icon and Smithtown resident Mick Foley stopped by a local comic book shop Sept. 7 to sign autographs for a cause close to home.

The big-bearded and even bigger-hearted 52-year-old best known to WWE fans as Cactus Jack, Mankind and Dude Love visited Fourth World Comics on Route 112 in Smithtown to sign autographs, pose for pictures and raise money for KultureCity, a Birmingham, Alabama-based nonprofit advocating for autism awareness and acceptance.

WWE wrestler and Smithtown resident Mick Foley poses for a photo with young children during an event at a comic book store in Smithtown where he raised money for Hurricane Harvey relief efforts. Photo by Kevin Redding

Foley helped raise $3,240 for the organization that is helping dozens of special needs families that have been affected by the Category 4 storm in Houston, Texas.

When he found out the group had members on the ground in Texas, and special needs families were struggling with torn-apart homes and lost items, he knew he had to get involved. The organization is also near and dear to Foley, because his son is autistic.

“Anyone who knows about children on the autism spectrum know they tend to thrive on regularity, and so to take everything they have and to suddenly turn that upside down is just devastating — even above and beyond what other families are going through,” Foley said. “This just seemed like a good way to make a difference. The money we raise may not change the world, but it will change the lives of these families.”

As a frequent shopper and celebrity guest at Fourth World in recent years, Foley took his idea for the meet-and-greet fundraiser directly to Glenn Fischette, the comic book store’s owner.

“It was really last minute, [but] as we can’t really go down there and help, we figured this is a good way to do it,” said Fischette, adding that he and Foley spent a day and a half blasting the event across social media after Foley proposed the idea Sept. 5. By 5 p.m. on the day of the event, an hour before Foley was set to arrive, a long line of super fans had already assembled outside.

WWE wrestler and Smithtown resident Mick Foley meets young fans during a signing to raise money for Hurricane Harvey victims. Photo by Kevin Redding

“People just love him. I know a lot of people who’ve been here before to see him, and they want to see him again,” the owner said. “He’s really into the charity stuff, so it’s great.”

Set up behind a table inside Fourth World Comics, Foley put a smile on the faces of hundreds of adults, teens and kids eager to meet their hero as he signed shirts and his own Pop! Vinyl doll for $20 to $30.

The Castoro family, from Smithtown — parents Jason and Nicole, and their 9-year-old kids Marilena and Brandon — were at the front of the line, each of them donning a wrestling shirt. As excited as they were for Foley, they came to support the cause, too.

“I think it’s wonderful he’s using his celebrity status for a good cause,” said Jason Castoro, a lifelong fan. “Sometimes when we go to meet famous wrestlers, you have to wait on a long line, and that’s just to meet them and take a picture. This really adds something special to it. We realized we had to come to this.”

Nicole Castoro pointed to her daughter, Marinella, who she said came up with a similar idea on her own.

“The other day, she said, ‘why can’t all the wrestlers just give the people in Texas the money they make?’ and here he is, giving them all the proceeds,” she said. “That’s really cool.”

WWR wrestler and Smithtown resident Mick Foley signs an autograph for Chance Clanton, of Austin, Texas, who is staying in New York for the week. Photo by Kevin Redding

Another lifelong WWE and Foley fan was Chance Clanton, an Austin, Texas resident staying in New York for the week. He said he has friends in Houston and is grateful for the overwhelming support from everybody, including his childhood idol.

“It’s really cool that he’s taking time out of his really busy schedule to show support for something like this,” Clanton said. “But it also really was no surprise to me when I heard he doing it, he’s so charitable.”

Throughout the event, Foley shared stories from his career, goofed off and laughed with fans, all the while thanking each and every one of them for being there.

“I’m really flattered by the length of that line — I didn’t think there would be this many people,” Foley said. “This shows the strength and the heart of the Smithtown community and the surrounding areas. We’re called Strong Island for a reason. We pull together. And that’s really nice to know.”

Above, the Cusumano family of St. James stands in front of their newly donated 84-panel solar system that will be used to offset the costs of raising a son with autism. Photo by Sara-Megan Walsh

By Sara-Megan Walsh

A St. James family is looking ahead to brighter days raising their son with autism after receiving a generous donation.

The Cusumano family received an extensive 84-panel solar system donated by SUNation Solar Systems and its not-for-profit SUNation Cares, which will supply free electricity for life. The funds saved will be used to help their 14-year-old son Dylan attend weekly equine therapy sessions at Pal-O-Mine Equestrian in Islandia.

“When we can all come together as a team it makes a tremendous difference in people’s lives, especially people like the Cusumanos who are most deserving to reap the benefits and tremendous rewards that were generously donated,” said Lisa Gatti, founder and executive director of Pal-O-Mine.

The solar panels donated to the family were the end result of positive community building by several local companies. Gatti said she was introduced to Scott Maskin, CEO and co-founder of SUNation, a Ronkonkoma-based solar panel company, through Empire National Bank, where they are both customers. Maskin said as he learned firsthand about the nonprofit work done by Pal-O-Mine to benefit children with disabilities, he asked Gatti if there was a family he could step in to help. That’s when the Cusumanos were nominated.

“We are overwhelmed by the generosity and I think we were stunned because we feel there are so many needy families on Long Island,” said Amy Cusumano, Dylan’s mother. “The gift of solar panels lessens our load or burden so the money we are using to pay an electric bill, we now get to decide if we can increase his horse time or do something else for the boys.”

Dylan, the oldest of the Cusumano’s five sons, started horseback riding at Pal-O-Mine at age 5 due to the therapeutic benefits. Equine therapy provides children with disabilities with positive vestibular, or inner ear, input, can improve speech and language skills, help with walking and can increase fine and gross motor skills, according to Gatti.

“[Dylan] didn’t speak when he came to Pal-O-Mine,” she said. “One of his first words was ‘walk.’ I remember Ms. Cusumano being shocked he began to speak while he was riding.”

Despite seeing improvement, Amy Cusumano said she was forced to discontinue her son’s horseback riding lessons for a few years when financial hardship struck. She said it was heartbreaking.

“When he’s on the horse, he’s so at peace, he’s so totally Dylan,” his mother said. “So when we can give him that half an hour a week where he can just enjoy himself and have some fun, it’s money well spent.”

Cusumano said Dylan’s medical care costs run $35,000 to $40,000 a year on average between co-payments, therapy and those services not covered by insurance. The estimated $3,000 a year the solar panels will save the Cusumano family will be used to help pay for his adaptive riding, which typically costs $260 for four 30-minute sessions.

Dylan’s individually tailored plan through Pal-O-Mine has him riding Ella, a 12-year-old palomino haflinger, once a week. His mother said Dylan frequently requests to go see his horse and cares for her. Horseback riding is motivating to him, and gives Dylan a sense of empowerment and independence, according to Cusumano.

“Autism is not the primary thing we are thinking about,” she said. “Maybe we’re thinking about how amazing he is or that he can ride a horse.”

Mikey Brannigan proudly displays the United States Flag as he races down the London track during the 2017 World Para Athletes Championships. File photo

By Desirée Keegan

Mikey Brannigan didn’t roam the halls of Northport High School, he ran down them. He’d dash through the doors as others raced behind him, saying “catch me if you can.”

“Stop that kid,” Brannigan said they would shout, laughing.

Mikey Brannigan received a proclamation from New York State Assemblyman Chad Lupinacci. Photo from Assemblyman Lupinacci’s office

Brannigan battled his way to a successful high school career, and beyond after graduating in 2015. The runner is continuing to exceed expectations — being the only Paralympic athlete in history to hold simultaneous records in the 1,500-, one-mile, 3,000- and 5,000-meter events. He brought home two gold medals — in the 1,500 and 800 — and silver in the 5,000 at the London 2017 World Para Athletics Championships at the end of last month.

“Make no mistake about it Mikey wants to be the best,” his New York Athletic Club coach of two years, Sonja Robinson said. “His drive — it shines out. You see it. He loves running.”

Brannigan was diagnosed with autism at 3 years old, and began running at 8. Fast-forward 11 years, when as a 19-year-old he became the first individual with autism to win a gold medal in the 1,500. He also became the first athlete with a T-20 Paralympic classification to shatter the 4-minute mile threshold in August 2016 with a 3 minute, 57 second finish at the Sir Walter Miler meet in Raleigh, North Carolina. A month later, he competed in the Special Olympics in Rio de Janeiro, Brazil, where he took home the gold after a dominating 3:51 in the 1,5000.

Mikey Brannigan, at center, is surrounded by politicians and coaches as he shows off his new proclamations and gold and silver medals. Photo from Assemblyman Lupinacci’s office

Now at 20, he’s training to compete in the 2020 Paralympics in Tokyo.

“I’m taking it little by little and want to show everyone that if you take even little steps you can achieve your dreams,” Brannigan said. “Look at all you can achieve. Work hard and you can achieve your dreams. You can achieve anything.”

Brannigan was honored by local government officials at Northport High School Aug. 9, receiving accolades for his accomplishments, while the members also dubbed Aug. 9 Mikey Brannigan Day in New York.

“He’s truly our hometown hero,” state assemblyman Chad Lupinacci (R-Huntington Station) said. “Mikey’s story is nothing short of amazing. What he has accomplished at his age is unheard of. His achievements are a true testament of his hard work, dedication, perseverance, sweat and tears.”

State Sen. John Flanagan (R-East Northport), whose kids graduated from and played sports in Northport, said he was in awe, and pointed to the back of the room — the local kids that were in attendance at the press conference — as the “cool” part of the event.

“He’s truly our hometown hero. Mikey’s story is nothing short of amazing. What he has accomplished at his age is unheard of.”

—Chad Lupinacci

“What we do when we go to Albany is we brag,” he said, putting his hands on Brannigan’s shoulders. “We tell everyone how cool our districts are, we tell everyone about the Northport school district, and we’re very proud of where we live and where we represent. There’s nothing, in my opinion, nothing better than dealing with young adults, no matter what they may be doing, because they’re the future.”

Brannigan grinned as he was invited to Albany in January to be recognized by the entire state legislature. State Sen. Carl Marcellino (R-Syosset) also presented him with a proclamation.

“We’re going to bring you up to Albany, but the bad news is, you have to run there and it’s 200 miles,” Flanagan joked.

“That’s a long, cold trip,” Brannigan responded, waiving his arms no.

Flanagan said he was humbled and proud to be in Brannigan’s presence.

“These are the stories people should know about and want to hear about,” he said. “I went from a stage where I used to run, then I jogged and now I walk. On my best day, I couldn’t even come close to the accomplishments of this young man, who really is a role model.”

State Assemblyman Andrew Raia (R-East Northport) agreed the barriers Brannigan has broken are unbelievable feats.

Mikey Brannigan smiles as he shakes New York State Assemblyman Andrew Raia’s hand during a press conference at Northport High School. Photo from Facebook

“Every day you turn on the television and something bad is happening,” he said. “I want to turn on the television to see this young man. It’s a big responsibility to carry, but in just the few moments I’ve had to talk with him, I know he’s up to the challenge.”

Raia proceeded to tell Brannigan he was going to embarrass him, to which he responded: “Do it.”

The assemblyman pointed out the runner’s red, white and blue Sperry top-siders, and said he needed to find out where he got them.

“He’s such a proud American,” Raia said, to which Brannigan smiled and shook his hand. “We wish nothing but the best. Keep running, my friend.”

Lupinacci shared a similar sentiment during the conference that was broadcasted on Facebook live and viewed by nearly 3,000 people.

“Your family and friends and all of us here today are proud of you,” he said as he gave Brannigan a hug. “Younger generations will follow in your footsteps. You’re not only our hometown hero, you’re an inspiration to all New Yorkers and all Americans. You’re an inspiration to people around the world.”

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