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Parents Helping Their Children and Each Other (New York)

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Little more than a decade ago, parents who had children with autism were given a diagnosis and little more. Devereux National Board of Trustees member James Schwab recalls, “Imagine receiving the devastating news that your child has autism and finding out there were few resources available.” With little to go on, James began planning for their son’s future and finding appropriate schooling, while wife, Kim, began working with two-year-old Jackson, now 15, in a homebased early intervention program.

Terry Pirraglia was at home working with her son Matthew, now 19. For three years Terry educated Matthew in the family’s home. Like Terry and Kim, Melanie Schaffran was at home diligently working with her son Brett, now 17, and with frustration, wondered to herself, ‘how long can we continue teaching our children in their bedrooms and our basements?’

All three parents were teaching their children using the Applied Behavior Analysis (ABA) Model, one of several approaches available at the time. All three sets of parents agreed that it was making a difference for their children.

The ABA model is a data-based and accountable model of teaching. Every instructional program is scripted out and appropriate data is taken to see if the child is learning and, if not, modifications are made to the instruction process, which is determined by the data collected. Prompts are used as a type of assistance for learning with the goal to be systematically removing the prompts. The hope is that the child will learn independently or at least learn with less intervention.

A Fortuitous Intervention
As odd as it may seem, an innocuous ad in a local Penny Saver newspaper in Westchester County, New York, began the wheels moving in a direction no one could have imagined. Terry recalls seeing an ad from a parent who had a situation similar to her own. The ad invited parents of children with autism, using the ABA model, to come together to share strategies on convincing local school districts to support funding of the ABA program. This led to a network of parents, including the Schaffrans and Pirraglias, who connected with the same goal…helping one another and helping their children with autism.

This network of parents looked into a solution that would help their children. All were using the ABA model at home, some with limited or no financial support from the local school district. Terry explains, “We needed to find someone to partner with who had an existing New York State School Charter and that would be willing to use the ABA model of teaching with student-to-teacher ratios of 1:1.” They also had to be open to working cooperatively with this group of dedicated parents. This small group of families started the Foundation for the Education of Children with Autism (FECA) in 1994 with the initial goal of opening a school for children with autism based on the principles of ABA.

Melanie’s husband, Drew, is an attorney and happened to mention the situation to a partner working in the firm’s Philadelphia office. The partner told him he represented Devereux and thought that there was a Devereux Center in New York. That suggestion led to a meeting between Drew and the New York executive director. Melanie remembers Drew returning from that first dinner meeting, “singing at the top of his lungs as he pulled into the driveway. It was very fortuitous to have met Devereux.”

The initial group of eight families agreed to partner with Devereux, provided the seed money to start the school and offered their talents to the start-up. Every member of the founding families had something to contribute to help make the school a reality.

Drew Schaffran did the legal work for the school, another father, a plumber, did all of the school’s plumbing. Terry scouted out the location for the school. Melanie’s background as a lobbyist and Terry’s work in government helped to navigate through the educational system to get the school off the ground.

While FECA was in full swing, James and Kim Schwab were part of another organized group of parents that formed the Autistic Children’s Education Association (ACEA), in an effort to start a second school in the Westchester County area, not to compete with the Devereux Millwood Learning Center, but to offer a second, much needed school. They too thought following the ABA model was paramount. James recalls that the financial resources to start and sustain a school were enormous so ACEA and FECA agreed to join forces shortly after the 1996 opening of the Devereux Millwood Learning Center, which initially served 12 students.

Looking Back and Looking Forward
FECA is still a very involved group in terms of maintaining an intense interest in their children’s program of skill enhancement and fundraising. Melanie explains the parents’ high-level of involvement as, “A way of ensuring that the school would remain an ABA school. We discovered that our kids learned under an ABA model and the school would need to remain true to the mission.” The parents continue to raise $500,000 a year through a dinner dance in White Plains, a cocktail party in Manhattan and the annual autism conference for educators and parents, cochaired by Terry.

The original network of parents now has children who are in the throes of adolescences and quickly approaching adulthood. When asked about what they would like to see for the Devereux Millwood Learning Center 30 years from now, they seem to agree that they hope researchers will have a better understanding of what causes autism and potentially a cure. In an ideal world, in 2037, Melanie simply states, “Autism would not exist.” James sees the school continuing, but hopes, “To have our school as a piece of an integrated plan to address services for individuals with autism from pre-school through adulthood.” Terry adds, she hopes to see, “Even more comprehensive services for families such as respite services, adult services and full support for families, including siblings, so that they can manage the stress of having a child with autism.”
Editor’s Note: Each of these parents was asked independently, when looking back on their success in founding the Devereux Millwood Learning Center, what are you most proud of? Here is what each had to say…

I am most proud that we’ve offered for all children, regardless of their parents’ ability to pay, an opportunity to get an appropriate education. As time goes on, other children will continue to receive an appropriate education at DMLC and future parents won’t have to struggle like we did; they have enough on their plate.

I consider it (the Devereux Millwood Learning Center) my third child. It is an accomplishment that I am very proud of, but like a child, once you give birth it is always yours. You make the commitment to nurturing and supporting that child and it is the same with the school. I can’t imagine never having some level of involvement with Millwood.

Jackson. None of us knows what he goes through and I have been willing to give anything to see the world through his mind and eyes, to understand and appreciate what his life is like. As a little boy, he worked hard, not always willingly, through eight hours of therapy a day, up to seven days a week. For a toddler, going through the drills and exercises to build cognitive, language and social skills it was grueling. No one worked harder that he did, except maybe Kim. Each day Kim videotaped what Jackson did with his therapists and then watched the tapes into the wee hours of the morning, like a football coach watching game tapes. Kim was trying to figure out which therapists related best to Jackson and why, then made the other therapists use the techniques that worked successfully. I am proud of everything Kim committed to helping Jackson.

James Schwab joined the National Board of Trustees of Devereux in 2001 as an Advisory Board Designee from New York. A few years later, he was named to the National Board as a Trustee. When asked why he chooses to donate his time to Devereux, he responds, How could I not be involved after seeing the work of the Millwood School and some of the programs in Pennsylvania and throughout the country? This is a unique organization in terms of its mission and the manner in which it carries out the mission, the way it is run and the people who are involved.

People at every level of Devereux are selfless, tireless. It is not enough to talk about Devereux’s Culture of Caring, they do it; these are angels. Anyone who is interested in helping the lives of people with special needs, especially autism, works hard, whether they are family members or direct care staff. It is not the highest paying profession, not the easiest profession, they don’t always get the recognition and sometimes people don’t know what we do, but for families, whether they say it often enough or loud enough, it changes our lives and there is no level of gratitude we can express. They touch our children with love, compassion, enthusiasm and skill. It is truly remarkable.


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