Thursday, March 25, 2010

Discovering a New Life

Two years ago, our family made one of the most difficult but ultimately most rewarding decisions for our daughter Eden -- enrolling her at the Center for Discovery, a residential school located in Harris, New York. Eden had attended special schools since she was very young, transitioning early from home-based therapeutic programs to center-based. We tried a variety of programs and settings, both in Brooklyn and Staten Island, all of which attempted to teach her. Despite their best efforts, her developmental progress at these schools was glacial. Certainly, she enjoyed the programs and the stimulation they provided, but their teaching and her learning was minimal. At her last public school placement here on Staten Island, she was the lowest functioning child there and it was clear the school was ill-equipped to help her. While the rest of the children would engage in games and activities, Eden would sit in a corner, bouncing on a ball, overseen by her aide but detached from her peers and teachers. We knew something had to change.

 Years earlier when she was five, Eden had been admitted for inpatient treatment of self-injurious behavior at the Kennedy Kreiger Institute, part of Johns Hopkins University Hospital in Baltimore, MD. I intend to recount the gory yet glorious details of this experience in another post. Suffice it to say that, for the six months while she was being treated, she began to make the first significant academic progress we'd ever seen. Eden was LEARNING! The treatment program also involved academic instruction by therapists and teachers, employing strict Applied Behavioral Analysis (ABA) techniques. Through their efforts, Eden was learning to make choices, identify objects, and respond to instruction.  Given her poor track record with schools, I'd almost given up hope that she was teachable at all. And yet, right before our eyes, we saw her interacting with her teachers and accurately responding to requests. We were floored.

 Eden's treatment in Baltimore successfully cured her self-injurious behaviors and also established that she was teachable in the right setting with the right staff. But when we returned to Staten Island, none of the local schools seemed equipped with sufficient resources to continue what she'd learned. We began to consider our options, realizing we would have to take action against the New York Board of Education. In speaking with the school psychiatrist, he confided that his school had little ability to provide her with an adequate education, and that a residential setting might ultimately be best.

 Obviously, this isn't an option that the New York Board of Ed likes to make available to parents. We located and hired an extremely talented special needs attorney who brought a lawsuit against the Board of Ed, claiming that they had not satisfied their legal requirement to provide an adequate education for Eden. Through a series of impartial hearings and eloquent pleas on our daughter's behalf, we ultmately prevailed and got approval for Eden to attend a residential school. Our lawyer told us about the Center for Discovery, as the premier residential school in New York State.

 We travelled to the Center soon thereafter to meet with the administration and tour the campus. We immediately fell in love with the place. The Center's campus encompasses several acres of school buildings, therapeutic centers, medical facilities, and residences. The Center also integrates a tremendous, self-sustaining farm that's managed and maintained by children and adults who reside there. As part of their education program, students learn academics focused on ADL (Activities of Daily Living) skills with emphasis on building on their innate abilities. Each child has a team of specialists -- therapists, teachers, doctors, nurses, behaviorists -- who develop a unique learning program designed to address their strengths and deficits. While touring the facility, our hearts raced with anticipation, realizing what a coup obtaining a placement here would be for Eden. We saw multiply disabled children and adults living and learning in an environment where they were clearly well-cared for. Every staff member greeted us with a genuine smile while visibly engaged with their charges. This was clearly the right place for Eden. It would eventually open up a whole new world for her.

 After an intimidating screening interview where I presented my daughter's case in front of a dozen administrators and teachers, the Center ultimately admitted Eden and secured an opening for her within a few months. We knew that this would be a huge transition for our family, not having Eden living at home with us. But our experience in Baltimore had also prepared us for this. We would be with Eden on the weekends, but during the week she would be learning and growing in ways she never had before.

 Eden started attending the Center for Discovery in September 2008 when she was eight years old. That first day, we met with the multi-disciplinary team(!) assigned to formulate her educational plan. Over several hours we poured over all her behavioral and academic goals so we had a clear picture of what she would be learning and how. At the residence, the staff had posted a huge "Welcome Eden!" sign in the entrance, and we were struck by how welcomng and friendly everyone was. They understood how tough the decision to have a child attend a residential school was. But we couldn't deny Eden this chance at a new life. A new life, indeed.

Within a few months, Eden seemed like a different child. She was attending school, engaging with adults, and learning practical skills. Since she was reluctant to walk across campus to her classroom, they tried her on a adapted tricycle and Eden learned to ride! The first time I saw her on her bike, I nearly fell over. Miracle of miracles!  With talented professionals and a small village of help, Eden was learning and growing in ways she never had before. They even taught her to recycle and do laundry! I swear, it's true, but would have never believed it without seeing it.

Today, we look back on the decision as one of the wisest we could have made. I suspect my wife always knew that eventually Eden would be best served by this type of educational setting. I took a little more convincing.  Now when we meet with her teachers and review her goals and accomplishments, for the first time we see a program that addresses her needs.  In the past her schools would simply rehash the same objectives but never meet them.  As parents, we can never stop advocating for our kids to get the best help they can.  Parents of disabled kids are some of the most tenacious I've ever met.  We have to be, to get the best services we can for our children.

We ended up buying a weekend house near Eden's school and we come up every weekend to be with her. She seems genuinely happy and enjoys her new school.  What's more, her world has opened up to an educational program that stimulates and engages her. With the help of her teachers and aides, she's learning to take care of herself and building some practical skills too. Whatever her potential may be, she's sure to make the most of it at the Center for Discovery.

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