The Inside Press

Magazines serving the communities of Northern Westchester

Special Needs

Behind the Launch of MyConnect

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Caroline Balil and her son

Living in such a digitally advanced world, you would think you can google the answers to just about anything. But when Caroline Bilal’s son was diagnosed with Syngap1, a rare genetic disease, and she was looking for answers and resources, the internet was not as helpful as she expected. She found herself spending hours on end navigating the difficulties of accessing information that she thought would have been readily available.

With the advanced state of today’s technology, it is both shocking and disappointing that this information is not easily accessible. Bilal was surprised that a platform that aided people in identifying resources for children with special needs didn’t already exist.

“I found it odd from the get-go that there isn’t a technology platform… that helps to connect parents and families to information, and also more systematically to other parents who have kids with similar profiles,” said Caroline Bilal. While Facebook groups can be helpful, there is no emphasis on the quality of information. And while word of mouth is another effective strategy, what works for one family often does not work for another. And so, with no existing efficient solution, Bilal set out to create one herself.

With the help of countless dedicated volunteers, Bilal and her co-founder, Faradjine Laurore, launched MyConnect on March 2, 2022. The website contains both a private social network, or a community feature, and a directory that provides well-researched special needs programs, providers, and resources in Westchester County. 

The directory provides an efficient approach to finding resources and shares the quality thereof. If you were to google “special needs schools and educational programs in Westchester,” you would obtain approximately five results.

MyConnect co-founder Faradjine Laurore

However, in reality, there are over 50 private schools and out of district schools for special needs students in Westchester. MyConnect provides an easy and free way for parents to access the information needed to best care for their children and to connect with other parents going through the same situation. “We want all parents to have access to this information and access to one another always,” shared Bilal. The platform provides a “one-stop” method with various helpful resources that would otherwise take a tremendous amount of time and effort to collect from countless different sites.

The ultimate goal is to make the research process as easy for parents of children with special needs as possible, so that they can focus on supporting their child and optimizing their potential. Parents and families should be able to focus on doing what is best for their child without being burdened by a time-consuming, inefficient, and sometimes expensive process.

“It is my deep belief that parents, regardless of their socio-economic status, have free access to the information that enables more successful advocacy for their special children. While I was fortunate enough to have the skillset, the time, the financial resources, and the endurance to pursue the research that ultimately helped my son… all parents should be given the tools that affords them this chance,” said Caroline Bilal.

Bilal expects to continue to grow MyConnect and reach the families and parents that need assistance. With roughly 28,000 families in Westchester having kids with special needs or disabilities, it is clear that there are an abundance of families who would benefit from resources and assistance. Fortunately, MyConnect is now here to provide that assistance to any families in need.

For more info, please visit MyConnectUSA.com

Pout Pout Delivered Family Entertainment with an Important Message

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Families gathered at the Chappaqua Performing Arts Center to enjoy a musical performance of The Pout Pout Fish, a popular children’s book brought to life.

Article and Photos By Leslie Regan

The lively musical Pout Pout spreads the important message that everyone should be valued for who they are on the inside, and not judged based on appearance.

Talented actors and actresses brought The Pout Pout Fish story alive with song. Audience members enjoyed the catchy tunes.In addition to the 11 a.m. show, there was a 2 p.m. performance that was geared towards community members with sensory sensitivities and other special needs. There was a warm sense of inclusivity at both performances where students from The EPIC (Every Person is Connected) Committee sold books and concessions. The EPIC committee helps students with special needs contribute to their community in a meaningful way for all involved.

The Pout Pout Fish was brought to the Chappaqua Performing Arts Center on May 25 by Friends of ChappPAC, a local non profit organization. This newly formed nonprofit was created in order to provide Chappaqua with cultural and live arts and bring families together. Friends of ChappPAC teamed up with another non profit organization–TheaterWorks USA–to put on Saturday’s performances.

Tracy Stein, Vice Chair of the ChappPac Board of Directors, said TheaterWorks brings to life children’s books; their mission is to bring theater to all areas of the country-including underserved areas and schools. “They promote literacy and provide theater to places that might not get it otherwise,” she said. 

As part of Friends of ChappPAC’s mission to provide programming also to local underserved communities, it provided tickets to local organizations such as Neighbors Link and The Boys and Girls Club of Northern Westchester, which allowed many children and families to enjoy The Pout Pout fish and the ChappPAC.

Friends of ChappPAC is also working to raise money to kick off its inaugural 2019 Fall Season. “Models like the Jacob Burns Film Center and the Emelin Center for Performing Arts show that community investment is critical to programming,” said Stein. 

Friends of ChappPAC would like to continue to help spread the joy of theater, and is seeking additional funding. If anyone would like to join the Executive Committee, they are encouraged to contact Friends of ChappPAC at friendsofchapppac@gmail.com

Leslie Regan is a Lehigh University student with a passion for photography. She studies Psychology and Journalism and enjoys combining her interests by getting to know people and telling their unique stories through photography. She has covered several events for Inside Chappaqua Magazine and has been photographing parties, and families, and special events on her own for the past few years.

Actors and actresses were the voices and singing voices behind the sea creatures. Some characters consisted of a shark, clam, octopus, eel, and of course The Pout Pout Fish.
The Pout-Pout Fish book is illustrated by Dan Hanna. His beautiful drawings were  brought to life on stage with bright fish and other ocean creatures.
Tracy Stein is the Vice Chair of the Board of Directors of ChappPAC. The goal of this organization is to bring more productions to Chappaqua such as musical theater and concerts in order to unite and bond the community.

 

 

 

The All-Inclusive Quakers!

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The Award-Winning Wrestling Team with Compassion

Competing in wrestling meets across the region, the composition of Horace Greeley’s team is like no other.

For the last four years, the Greeley wrestling team has been inclusive where the Quakers have students with special needs practicing and competing with the team. The three students this year aren’t just managers simply helping out, but athletes that put the same work and dedication into their craft just like every other wrestler on the team. Their addition has been both incredibly rare among local wrestling circles and undeniably beneficial.

“I think it changed the culture of our team in a positive way,” head coach Mike DeBellis said. “It seemed like the kids had more compassion for each other and tried to help each other more.” DeBellis has been coaching wrestling in the district for the past 16 years and currently teaches Introduction to Engineering, Robotics and Technology, and Design Integration classes at Greeley. He was this year’s recipient of the Ed Habermann Award from the Horace Greeley Scholarship Fund’s annual gala last month for being an exemplary role model for students in the district.

Awards Abound for the Quakers

While more compassion seems to be counterintuitive in a sport where a moment of mercy could spell disaster, the results for Greeley can’t be questioned. The past two seasons, senior Nicholas Ng, junior Ho Jin Lee, and sophomore Brady McCarthy, who all are special needs students, have been part of a team that has finished in the top ten both years in all of New York State.

Captain and senior Aaron Wolk was crowned state champion for his weight class at 172 pounds. He is the third Greeley wrestler to win the state championship. Previous state championship titles by a Greeley wrestler were won in 1978 and 1995. Wolk will continue wrestling next year at Brown University. Captain and senior Matt Schreiber took fifth overall for his weight class and captain and sophomore Isabella Garcia finished second in the New York girls state championship this year.

Lee, who has Down syndrome, joined the team four years ago. McCarthy, who also has Down syndrome and Ng, who is autistic, both joined the team two years ago. The three students are able to participate because assistant coach Anthony Tortora is certified to instruct students with disabilities. (He works as a physical education teacher in the Bronx with special needs students.)

The three boys are at practice daily, going through the same grind as everyone else and occasionally compete at meets in exhibitions matches against grapplers from other schools. All three boys are also certified to wrestle.

Brady’s father, Kevin, said wrestling has given Brady a boost in confidence and allowed him to meet more classmates he wouldn’t normally get to know. When Brady performed in a school play this year, many of his teammates attended the show.

Physically, it’s been great for him, and allowed him to be part of something bigger than himself. While Brady has played other sports, a certain temperament is needed to wrestle.

“He likes competing,” Kevin said of his son. “It made him a more complete person.”

DeBellis has made it clear anyone that wants to join the team is more than welcome. DeBellis has been known to recruit students in the hallway to join the team.

“Wrestling is a unique sport in that when you do it, you’re a wrestler for the rest of your life,” DeBellis said. “No matter what happens, you’re a wrestler and it’s a totally different sport than any other sport out there.”

“Wrestling really is the only sport where it is all-inclusive,” he added.

Trio Serves as Role Models for the Team

Tortora said the inclusion of McCarthy, Lee and Ng in the program lights up the day for every other wrestler in the room.

McCarthy has even become known for his pep talks at meets and being the most passionate person cheering for teammates. He’ll sit right next to the coaches while a teammate is on the mat and repeatedly tell him, “You can do it, you can do it.” His father encourages his son to, “be there, be vocal.”

And it certainty doesn’t go unnoticed. His teammates love watching him wrestle because there’s no denying how passionate he is. When Brady gets the opportunity to shine, he puts all his effort into it.

Schreiber said he’s learned to be more patient and pay attention to every minute aspect during practice. Wrestling can be a very detailed oriented sport, he noted, which requires his three disabled teammates to focus intensely. Garcia added while wrestling can be incredibly arduous, anyone with the right mindset and desire, like McCarthy, Lee and Ng, can participate. And Wolk said he’s learned to never give up. While it might take his three disabled teammates more time to grasp a new wrestling move, their attitude is only positive and optimistic.

There are no excuses for another wrestler who’s been given the gift of able body and mind to get frustrated or complain when there are three teammates with disabilities who refuse to settle. “They always have so much energy at every practice and it is great to see,” Wolk said. “It shows the rest of the team, don’t give up.”

A Music-Ability Minded Program: Rock On Music School

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(L-R) David Meyers and Sophia Tuohy, a music student from Armonk
PHOTO COURTESY OF DAVID MEYERS

David Meyers found his passion for teaching music to children with disabilities quite accidentally. Having spent most of his career in real estate, music was relegated to a side pursuit that he relished when afforded the time. In 2008, however, that all changed when he began teaching a youth music program at New York’s Patterson Recreation Center. Playing and writing music moved to the forefront of his focus as his career took an unanticipated turn.

A New Beat

As Meyers became acquainted with the learning style of today’s children, he saw that to resonate with his audience, he would need to devise his own curriculum. He explains, “I quickly found that kids no longer absorb music in the same way as when I was a student. Modern music is heavily electronic and lyrics are oftentimes not age appropriate.” As a result, Meyer’s unique “RockOnMusicSchool” technique was born. He created original music and developed a learning method that began with simple lyrics, accompanied by the most basic guitar string work that gradually advanced to intricate songs with chords requiring increasingly complex finger work.

Serving the Underserved

In teaching, Meyers found a renewed sense of gratification, saying, “It’s the first job I’ve had that isn’t just about the dollar and that is so personally fulfilling.” The role soon became even more meaningful when a friend approached him to give lessons to his son who has autism. Meyers adapted his mainstream curriculum and within a few months saw his new student develop confidence through music. That experience shaped Meyers’ music school. He says, “I made a personal commitment to cater to this audience. These children have a tremendous need for recreational opportunities and are such an underserved community. Music provides them with a creative and social outlet, while building self-esteem, fine motor and language skills.”

Meyers now teaches music lessons through organizations such as SPARC (Special Programs and Resources Connections) of Westchester County as well as through his RockOnMusicSchool, providing one-on-one sessions at students’ homes. “Conducting lessons in a child’s home is so beneficial to those with physical disabilities that may make it challenging to get out or those who thrive within the comforts of their own environment,” Meyers says. Lessons are fine-tuned based on each child’s unique abilities. As Meyers points out, “Depending on the child’s circumstances, we might select strings, drums or keyboard.”  He also modifies lessons by focusing on specific skills such as developing eye contact, sounds or social cues. To engage the kids, he often writes “silly, personalized songs” to get them excited and motivated for playing music.

Marilyn Tuohy of Armonk has become accustomed to hearing Meyers’ fun lyrics throughout the hallways of her home. “My daughter Sophia has Down Syndrome and loves music, which led a friend to recommend David to us. He really knows how to interact with her and gets her engaged no matter what her mood. He brings all instruments including drums, shakes, the keyboard and guitar and always comes up with new songs that are so alive and appealing to kids. They learn the lyrics right away. After David leaves, Sophia as well as my two sons and even my husband are still singing! I’ve seen my daughter’s speech and fine motor skills develop as a result. She speaks slower and clearer and is always singing in the house.”

Music is known to have therapeutic qualities and Meyers agrees, explaining, “Music has a natural timing and rhythm that serves to encourage children to use their voice in response to appropriate cues. Songs have a built-in conversational script that is valuable for children who have social challenges. Students learn to manage frustration, gaining the understanding that it’s okay to mess up and that they will eventually advance. It’s all in their control. These are skills they will take with them into adulthood.”

A Satisfying Crescendo

Today, that first client that inspired RockOnMusicSchool’s mission is now proficient in keyboards, bass, drums and guitar and has developed a love of The Beatles. Meyers proudly reports that this student has also integrated into a mainstream music class. “Each child already feels the music inside of them–some just need guidance to get it out,” he adds as we wrap up our conversation. And, it seems that Meyers has mapped the path as he continues to encourage all children to find a love of music in their own unique way.

Exceptional People: A New, New Castle Committee Formed to Address Special Needs

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A New, New Castle Committee Formed to Address Special Needs

Kevin O’Brien
Kevin O’Brien
By Heather Skolnick

The Census Bureau estimated in 2010 that 19% of the United States population has a disability. That’s approximately one in five. That means in a group of five friends, one of them may have a disability. In a classroom with 20 students, four may have a disability. While the definition of disability may be broad, the prevalence of it in the United States is incredible.

National statistics on those with a disability are alarming. Those with a disability are significantly less likely to earn their high school diploma. They also earn far less than their same age peers, and are far more likely to be living in poverty.

To support our neighbors in our community with disabilities, in 2015, the town of New Castle formed the New Castle Exceptional People Committee. According to Town Supervisor Robert Greenstein, its mission is to “report and make recommendations to the Town Board on the concerns of the Town’s special needs residents, provide updates on the Americans with Disabilities Act, and disseminate information on the Town’s recreational, educational and social programming for all age groups of residents with special needs.

The Committee will focus its efforts on organized recreational, educational, social and skill-building activities and work to raise general awareness about the needs and rights of persons with disabilities.”

Thus far in 2016, nine members were appointed and a round table session was held to discuss employment opportunities for people with special needs. The committee meets a few times a month and discusses the things they would like to accomplish. The Committee includes people who have disabilities themselves as well as those who have a friend or family member who does.

I met with Kevin O’Brien, one of the appointed members of the Committee. Kevin is the youngest member of the committee and has special needs. At 19, he brings a unique perspective and represents the young adult population. Kevin is very passionate about the New Castle Exceptional People Committee. He said, “It offers me a good way to express my ideas and suggest strategies for people with different disabilities that we think can make their future better.”

Kevin’s ideas span the gamut, from social to physical to philanthropic activities. Kevin would love local opportunities to be social, in a way that is comfortable to him and people like him. He is, after all, a teenager, and would like to be with peers and have fun! He has organized his ideas into two categories. The first encompasses exercise and nature. He suggests organized bike rides, hikes, bird watching. Another idea is watching sports, but for those with sensory issues, all buzzers, loud noises and flashing lights eliminated. he second category includes ways to be a part of the community. He suggests book discussion groups, art and music classes.

Kevin also suggested a Habitat for Humanity project that is specific to the Special Needs community and their abilities. These are all things that New Castle currently offers for the general population, but Kevin suggests separate instances with modifications as needed.

Kevin recently graduated from high school and will soon be looking for a first job that suits his skill set and meets his interests while accommodating his special needs. This is an area the committee will continue to address–how to ensure that the special needs community has the necessary job skills to get and maintain a job as well as how to find an appropriate position. Perhaps someone reading this very article knows of something that would be a good fit for Kevin!

A recent post on Facebook’s Chappaqua Moms group by one of the members let the community know of the group’s existence with the intent of identifying more of the Special Needs community. The group wants to be sure that they truly are serving the wishes of the community that spans young and old, with various disabilities. The need is clear for a group such as this one and there is no doubt that they will accomplish much if my conversation with Kevin is any indicator.

When I initially reached out to Kevin via email, he responded, “I am so inspired by the town‘s responsiveness to the concerns of people with disabilities.” But it is I who is inspired by him and his passion for making this town a better place for those with a disability.

Heather Skolnick and her husband Neal  have three young children. They have been New Castle residents for ten years. When Heather isn’t writing articles, she works for a footwear company as their Director of Planning.