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FUN Co-Founder Knows Autism Is A Family And Community Affair

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This testimonial was created by Linda Jones — Co-Founder of Families United in Newtown — FUN.

Two years after the birth of our daughter Lindsey, and shortly after moving to Newtown, we were gifted with twin boys Austin and Tyler, completing our family of five. I never would have imagined the future.

In 1992, everything seemed “normal.” Two years later, autism entered our home and extracted normalcy from our lives.

Autism Spectrum Disorder (ASD) has an impact on the entire family and community. Very little was known about this neurological disorder in 1994.

Every child with autism is just that, a child with autism. Everyone is different. They appear similar but, each individual has their own unique ways.

You muddle thru a maze of medical tests — but nothing gives a road map for treatment. It is like no other illness. Autism is a mystery.

When our children were growing up, we frequently rented the Edmond Town Hall basketball court to offer an active experience in a safe place. Tyler loved ball play and anything recreational. I believe he could have been an amazing athlete.

He was non-verbal and communicating his needs was challenging. Screaming, kicking, biting, pinching was how he attempted to express his feelings. A trip to the gym helped us cope.

In 2006, I wanted to form a recreational group for families with special needs that could offer social and emotional opportunities. It takes a village to raise a child with ASD, and I wanted to help form a village. I started raising money that year to create this dream. I opened a bank account that became the “recreational group fund” and in the summer of 2009, reached over $2,000.

Obviously, this was not a large amount of seed money but a start for my endeavor.

Losing Tyler

Tyler passed away the fall of 2009 unexpectedly from an event called SUDEP — Sudden Unexpected Death by Epilepsy. Losing the dream of your child’s life on this earth is a loss that accompanies the diagnosis of ASD. Death is an unimaginable reality that ends all dreams.

Shortly after Tyler’s passing, I went to our Newtown High School’s Honor Society and requested their support. The president of the society, Brian Reed (and Austin’s long-time childhood friend), helped with this charge.

Families United in Newtown — also known as FUN was born. Our tragedy turned into legacy and FUN has been thriving since.

The mission of FUN is to provide individuals and their families social opportunities in a caring environment. The Honor Society students, student volunteers and adult volunteers support FUN members, granting parents a small bit of respite when possible.

I have had the privilege and honor of watching many kids grow up during the past thirteen years of FUN. Their transformation into adulthood has been nothing short of miraculous. As adults, many of them have been able to establish a “normal” life, learning to drive, gain employment, and live on their own.

I recently chatted with a friend and long-time supporter of FUN, Dawn Ford, about her son. Ben was in Lindsey’s 2nd grade class at Hawley School.

When Lindsey shared that she had an autistic boy in her class, we did not believe her until we met the Fords at conference night. I was surprised when Ben was able to recite 50 states and their capitals minutes after we met him.

Ben, now 32, has lived in his own apartment (Ben’s Cottage) at Nunnawauk Meadows for the past two years after being on a waiting list for four years.

Ben has four different jobs and works 22 hours weekly to pay his rent. His parents have encouraged him on seeking meaningful employment since he was able. Dawn shared how Ben was able to get these jobs because she had relationships with the business owners who “gave Ben a chance.”

Dawn reflected, “it is all about having an employee with autism show what they know — when they are given an opportunity.”

Our community has embraced Ben, giving him a chance to shine. Many kids with autism have skills that can really benefit the right company.

According to the US Dept of Education, generally, people with autism tend to pay great attention to detail, stick to rigid routines, and prefer to work independently. And a recent report on autism and employability noted a powerful stat from J.P. Morgan Chase and Co, which reports its more than 300 autistic employees are 48 percent faster and 92 percent more productive than their neurotypical employees.

In fact, James Mahoney, the head of Autism at Work at J.P Morgan Chase and Co, says that autistic employees were as much as 140 percent more productive than their peers.

A community that supports and loves these kids and young adults — and provides meaningful employment is essential.

Ben has found a community within a community at Nunnawauk Meadows, and a story like Ben’s helps illustrate how autism is a family and community affair.

For more information about Families United in Newtown visit Familiesunitedinnewtown.org — or the nonprofit’s Facebook page at Families United in Newtown.

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