By Jean Sheff
As many mothers and fathers know, giving birth to your children is sometimes the easy part. Yes, every child at one time or another will present their parents with unexpected challenges. It might be a broken bone, a chronic illness or a learning disability. The list is endless. Still, parents are known to rise to the occasion, and more often than not, they will do whatever it takes to help their child thrive. In some cases, that means going a lot more than the extra mile.
Melanie Schaffran, then a Chappaqua resident, knew something was wrong when her bright, baby boy Brett lost his language skills when he was two years old. For two years, she and her husband Drew searched for answers. During that time, Brett was diagnosed with autism, which according to the National Institute of Child Health & Human Development, is broadly defined as a developmental disability that causes problems with social interactions and communication. Today, most experts use the term autism spectrum disorder (ASD) to explain that autism is a group of complex disorders of brain development with similar symptoms that can range from mild to severe.
Ever hopeful that Brett could be reached, Schaffran tried bringing him to a variety of intervention programs including a special therapeutic nursery program that employed auditory integration therapy, lauded to help a broad range of autism spectrum and other pervasive developmental disorders. Nothing helped.
A New Therapy
Then Schaffran read, “Let Me Hear Your Voice: A Family’s Triumph over Autism” by Catherine Maurice (Ballantine Books, 1994), a mother’s true story about the struggle and success of raising her autistic daughter and son. Maurice found success with a behavior modification program that O. Ivar Lovaas, a California-based clinical psychologist, had given careful study. Known as Applied Behavior Analysis (ABA), the therapy required home schooling. Schaffran was willing to give it a try. “ABA is a scientifically-based program that is goal intensive and works to reroute brain synapses in order to reach the child,” she says. “The theory is that the young child’s brain is plastic and can be retrained so the language center can be reached.”
The therapy started with basics. ABA acknowledges that a child with autism will not make eye contact and must be taught first to focus on a teacher so they can process information and learn. Schaffran began by holding an M&M (a reward) in front of her nose and saying the words “look at me” to her son. After one week of daily sessions it was clear that Brett understood the actual meaning of the words for the first time. “Before, those words were just gibberish to him, him,” she says. Eventually the child learns the meaning of the language without the reward. The next step is often teaching gross motor movements, explains Schraffran. “Language eventually takes on meaning for them through these simple exercises,” she says. During this time, Schraffran was in touch with her school district. “The school district at this time was very sympathetic, but there was little they could do,” she says.
Schaffran spotted an ad in the local Pennysaver that invited families who were applying the ABA method at home to come together to explore support and strategies.
That’s how eight families in the northern Westchester area joined forces to found FECA (Foundation for the Education of Children with Autism), purchase educational materials, hire a staff, find space and convert it into a working school for the purpose of teaching children using the ABA methodology. “But we needed funding and it was at this time that slashes were being made in the state education budget,” says Schaffran. By serendipity, one of Drew Schraffran’s colleagues mentioned Devereux, a not-for-profit behavioral health organization. The good, long and short of the story is that Devereux agreed to partner with the families, who all volunteered their time and talents to establish the Devereux Millwood Learning Center in 1996 with 12 enrolled students between the ages of 5 and 21.
Chappaqua resident Doreen Engelsher was trying to mainstream her son Nicholas when she discovered the Devereux Learning Center (DLC). “We got on their waiting list and when I got that call that they had an opening, I felt like I hit Lotto,” she says. Engelsher met with teachers and therapists every six weeks to follow Nicholas’ progress. “Often, a child with autism can’t give you feedback. That’s why the support at DLC is so important,” says Engelsher, who had to stop working for a year to devote her fulltime effort to her son’s schooling. “You’ll do anything for your child,” she says.
Cindy Alterson, Ph.D., principal of Devereux Learning Center and director of the Academy Program, a night school there, says, “Devereux is the only center in the Westchester area that teaches the ABA method. “Today we have 48 students who come from Westchester, Rockland and Orange counties as well as New York City.” Alterson, as well as parents we have talked with, have made it clear that school districts vary as to their ability to help children who need services such as Devereux offers. Many districts have come a long way in their ability to mainstream students successfully. Chappaqua School District has long been known to be especially sensitive and effective in helping children with autism and other learning differences. “It depends on the district,” says Alterson.”
Every district has its threshold of the behavior they can handle.” Students are generally referred to Devereux when that threshold has been met. Regardless of behavioral issues, children coming to Devereux have a wide range of academic abilities. “Teachers and therapists apply the ABA model to gauge how each child learns and to arrange the academic environment to promote learning success,” she says. Each child has a personal IEP (individualized education plan) and works in a classroom that has one teacher and three teaching assistants for each six students. In addition, the school operates on a 12-month program that has been proven to be especially effective and helpful for students, families and teachers.
Alterson notes that many 11 to 15 year olds are referred to Devereux. “With puberty comes hormonal changes which sometimes translate into behavioral changes,” she says. The odds of inclusion working in the classroom are also much different for the middle and high school age student. “Expectations for students at this age are increased and it can be hard for some students to make the academic transition.”
Engelsher says puberty can indeed cause a “rough patch” for children with autism. But properly addressed, the “time of turmoil” can be overcome. Her son Nicholas plans to stay at Devereux until he ages out at 21. He is learning to be as independent as possible and these days he even works locally at the food pantry and a nursing home. “This gives him a purpose to his day,” she says.
Three years ago, Devereux started an adult program for adults (ages 21 and over) with ASD. “This is a day-habitation program without walls,” says Alterson. The program teaches “how–to” have a job and be appropriate and live in the world. It offers a continuation of the services from the school program as well as supported employment services and job coaching. Today, some 15 students participate in this program.
Into the Community
Diane Slonim, SLP, Ph.D., has volunteered many hours helping develop what many consider an especially critical program at Devereux, the Academy Program or night school, as it is often referred to. “After high school, a youngster with ASD can be so lost,” says Slonim. “Many find navigating the world difficult.” One and a half years ago, this program was created to assist students with social and life skills.
Alterson says some students in the program are prevocational while others are precollege. Enrollment, which is on a semester basis, has ranged from 8 to 22 students. The goal is to assist these youngsters in being self-sustaining in a community.
Slonim says she has seen “awesome community building” with this program. She says each student has the ability to communicate given the right milieu with the right support. “It’s an enormous step when you see these young adults come together and care for one another,” says Slonim. It’s also clear to her that the “need is so great” for such programs.
Fundraising is ongoing in order to keep the Devereux Learning Center afloat. There are two major events each year, an event in November, which draws some 300 to 400 individuals, and a Spring Gala for which tickets are available. Donations are also welcome at any time. As many have mentioned –it’s so important to help Devereux provide opportunities for these youngsters, as they are part of our future community and will be adults longer than they are children. For Schaffran, whose son Brett is now 22, and Engelsher, whose son Nicholas is now 18, it is a great reward to see their boys healthy and active in their community.
Jean Sheff is a Chappaqua-based freelance writer and editor.
DID YOU KNOW?
- Autism currently affects 1 in
- 110 children and 1 in 70 boys and its pervasiveness is growing.
- Every child who is diagnosed with autism presents with a wide variety of unique symptoms that include social, communication and behavioral differences.
- Asperger’s Syndrome is an autism spectrum disorder considered by some to be a mild form of autism.
- Experts contend that the symptoms of autism can now be noticed in children as young as 18 months old.
- Children with autism are not mentally retarded.
- Early intervention is important in helping a child with autism establish learning and communication skills. • According to the Individuals with Disabilities Act of 1990, which mentions autistic children specifically, children with autism deserve access to a “free and appropriate” education funded by the government, whether it is in a mainstream or special education classroom. –Jean Sheff