Parents Move Mountains For Special Needs Kids
By Maria Sonnenberg // July 7, 2012
special needs children
Parenting, it has been said, is a 24-hour-a-day job. For the parent of a child with disabilities, however, it is of a 48-hour-a-day journey.
They are the parents who must move mountains to help their children reach their full potential. Disabled children face a very bumpy road to adulthood, but several Brevard parents have made it their mission to not only ease the trip for their own children, but to make sure that other youngsters in similar circumstances can also access the help they need and deserve.
The area has become a hub of services for children with special needs because of parents like Betsy Farmer, Laura Joslin, Kristen and Robert Malfara, and David and Karie Ryan – parents who refused to take no for an answer when their children needed help, and who faced tremendous odds to create services for their youngsters and for the many other disabled children in Central Florida.
“God handpicks us to do what we need to do for our kids and the kids in our community,” said Farmer, who founded Space Coast Early Intervention Center when she couldn’t find services for her then two-year-old son, Luke.
Betsy Farmer: Promise in Brevard
In 1987, services in Brevard for small children with disabilities were limited, so Betsy Farmer filled a critical need when she created the award-winning Space Coast Early Intervention Center.
Her son, Luke, who has Down’s Syndrome, was one of the first students. In the early 90’s, SCEIC expanded services to include children without disabilities to act as “role models” for the disabled youngsters, who in turn, provide the typically developing students with a realistic and accurate view of children who can succeed despite serious challenges.
“We opened our doors to typically developing children and within a month, we had a waiting list,” said Farmer.
The brilliance of the concept is underlined by the fact that several of those early students are now young adults who are studying to help the disabled.
Luke so benefited from SCEIC that he became the first child with Down’s Syndrome to be mainstreamed into the public school system. However, as he grew older Farmer realized how narrow his career options were, so she formed the Brevard Business Leadership Network, which partners with educators and businessmen to introduce young disabled workers to a variety of job skills and working environments.
Luke and his mom are now making inroads with other programs to enhance the lives of disabled adults.
The co-founders of Promise in Brevard have turned their immense energy to creating a 40-acre village where people with diverse disabilities would be provided independent living and social and career opportunities.
“Luke has always been my inspiration,” said Farmer. “He gives me the vision and helps me make it happen.”
Laura Joslin: Ability Plus Therapy
Laura Joslin’s son, Cheyne, is an amazing young man who attends Stetson University, where he studies philosophy and integrated health sciences.
He was only 26 weeks old and all of one pound, 10 ounces when he was born 21 years ago with cerebral palsy. Doctors diagnosed him as a quadriplegic and didn’t offer much encouragement.
“I look at things logically, so I couldn’t believe I was the only parent in the world to have a child with special needs,” said Joslin.
Joslin, once a chef by trade, couldn’t find local services that would make a difference for Cheyne, so she began researching options and ended by traveling to Poland to examine the Universal Exercise Unit, advanced therapy equipment that uses a system of pulleys, straps, weights and splints to create a disabled anti-gravity exercise environment that allows children to advance in a shorter amount of time.
With that unit and with the TheraSuit, which helps special needs children to realign their bodies to better connect their sensory system, Joslin knew she had the answer for Cheyne, as well as for other youngsters like him.
She brought the equipment back to Brevard and opened Ability Plus Therapy, a Melbourne pediatric rehabilitation center that helps children with sensory and neuromuscular disorders achieve greater independence through intensive therapy programs.
Cheyne is now the poster boy for how much of a difference therapy can make. The quadriplegic who would never walk now only needs crutches to get around town and go to college.
Joslin’s adopted other son, Matthew, also has cerebral palsy, but Joslin’s efforts with Cheyne helped pave the way for Matthew’s rehabilitation. The biggest issue with Matthew was his poor performance in all the schools he attended.
“Matthew was failing in the public school system,” said Joslin, who realized that Matthew, as well as other children with cerebral palsy and other brain and bone disorders, could benefit from a Christian school that specifically served students with physical disabilities.
Thus was born No Limits Academy in 2008. Twenty-one students, including Matthew, attend the K-to-12 Melbourne school.
“One thing just led to another,” said Joslin.
Kristen & Robert Malfara: The M.O.R.G.A.N. Project
When Kristen and Robert Malfara’s son, Morgan, was two years old, doctors told them Morgan might live to see his third birthday, but certainly not his fourth.
The Melbourne Beach boy suffered from leukodystrophy, a rare genetic disorder that progressively affects the central nervous system by disrupting the growth of the myelin sheath that insulates nerve cells.
During the year after that dreaded diagnosis, the Malfara family endured the deaths of the five children in their support group…and waited.
Morgan, on the other hand, had no intention of dying. He stomped on all the odds and is now 14, with a little peach fuzz mustache and sunny personality.
His doctor’s flawed prediction did serve an important purpose, however, because it distilled Kristen Malfara’s energies into the creation of an organization dedicated to helping children like Morgan.
“The M.O.R.G.A.N. Project was my lifeline during that awful time,” said Malfara, of Melbourne Beach. “It’s where I found my purpose.”
The Malfara family had wanted to honor Morgan by creating a program of support for families of disabled children. “It was our turn to pay it forward,” said Malfara.
The M.O.R.G.A.N. Project is a national, community-based organization of volunteers to help parents care for special needs children.
The non-profit launched a Gently Used Disability Equipment Exchange Program that matches donated items such as walkers, wheelchairs, adaptive strollers and medical supplies with families who need them.
The organization also offers small grants so families can purchase equipment such as bath chairs, car seats, positional seating devices and other items that may not be covered by insurance but could make a tremendous difference in a child’s life.
This year, the M.O.R.G.A.N. Project also opened Morgan’s Place, a sensorium that promotes intellectual activity, heightens awareness and encourages relaxation.
The room, located in Melbourne Beach, brings together state-of-the-art multi-sensory equipment to stimulate sensory pathways of touch, taste, sight, sound, smell and movement without the need for intellectual reason.
Morgan’s Place, the second free-standing facility of its kind in the United States, gives children with profound disabilities a sensation they rarely experience: the ability to control their environment.
“It is our attempt to offer an alternative to inaccessible playgrounds and other places that unfortunately are not appropriate for the physically disabled,” said Malfara.
David & Karie Ryan: Assisting With Life Care, Financial Management
Four-year-old Kathryn Ryan, a happy little girl with a fantastic smile, a sweet disposition and cerebral palsy, may not know it, but Luke, Cheyne, Matthew and Morgan – and their parents – will all profoundly influence her life.
Kathryn is already a “frequent flyer” at Space Coast Early Intervention Center as well as Ability Plus Therapy. She will soon be discovering Morgan’s Place.
“I had the chance to visit the Morgan Project sensorium and can’t wait to take Kathryn to check it out in the next couple of weeks,” said Kathryn’s dad, David Ryan.
“Kathryn has also benefited from the wheelchair and bath chair we received from the M.O.R.G.A.N. Project.”
Ryan, an investment manager with JD Bowen Financial Group in Indialantic, is doing his own paying it forward.
He was recently selected to participate in the Partners in Policymaking Class, a leadership and advocacy training program sponsored by the State of Florida to teach families of children with disabilities, as well as adults with disabilities, to become community leaders and obtain the best available resources.
The program aims to produce partnerships between persons needing services with the policymakers and legislators who can make the wheels turn in their favor.
Ryan will take courses on issues such as inclusive education, employment, community living and community organizing. He has already made the decision to focus the core of his practice on helping special needs individuals with life care and financial management.
“Disabled children need to be able to realize their potential to live as independently and as productively as possible,” said Ryan.
Ryan, like Farmer, Joslin and Malfara, thanks his child for teaching him important lessons about life. Their children’s disabilities are not burdens, but rather a call to positive action.
“We are put on this earth to make a difference,” said Farmer.
“That’s what life is all about.”