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.

Tuesday, March 23, 2010

Why us?

It's a question that torments many parents of disabled children. What cruel fate or wrathful God caused us to have a child with severe mental or physical disability? When you're expecting a child, its a natural tendency to dream about all the wonderful experiences you'll share as your little boy or girl grows up. You make plans, big exciting plans, about everything the future will bring. Once your child is diagnosed with a physical or mental disability, however, those dreams tend to shatter like so much broken glass, leaving you to pick through the shards. And you're left to wonder, how could this be happening to us?

 I believe the human mind is designed to look for causality, reasons to explain the inexplicable. We like to imagine there is some semblance of purpose to the universe. When we first found out that our daughter suffered a developmental disorder, it started a search for answers that would span years. We met with every expert we could find -- neurologists, geneticists, pediatricians, neuro-surgeons -- anyone who might be able to explain why our daughter was born like this. Why had her brain tissue failed to grow normally? We went for innumerable brain scans, MRIs, blood tests, mitochondrial tests, more than I can fully recall, hoping to find the reason behind this tragic fate that had befallen our family. Perhaps we could find a genetic syndrome or indicator that would explain my daughter's condition.

 I was raised in a traditional Jewish family in a fairly observant household. As a child, I was taught how God made things happen for a reason, that behind every creation and occurrence there was intent. A plan that the Master of the Universe had for this world and its inhabitants. I'd learned how the righteous were rewarded and the wicked punished. During the High Holidays, the liturgy urged us to recall our misdeeds and repent, lest we be inscribed for misfortune or worse. On the basis of this spiritual worldview, I could only conclude that the birth of a severely disabled child was somehow my fault. I had sinned, clearly, committed some offense, to cause this fate to befall me. The birth of my disabled child was my punishment. But why? Try as I might, I couldn't imagine what crime I'd committed to warrant this agony. Over time, I grew very angry at God and distanced myself from my faith and any spirituality for a long time.

At some point during our quest for answers, I came upon a book titled "Why Bad Things Happen to Good People" by Harold Kushner. The author was a rabbi whose child had died of a terminal illness. This tragedy had caused Kushner to wonder why a good and loving God would allow such suffering to be present in the world. In particular, why such suffering had been visited upon him and his family, when he had dedicated his life to the service of others. His exploration of these questions and conclusions made a real difference in my life. Kushner proposes that God doesn't cause such tragedies (and certainly wouldn't cause innocents to suffer) but neither can He prevent them. What faith in God can do is provide the strength to cope with life's misfortunes by assuring us that were not alone in our pain.

This simple realization was an overwhelming relief for me. It truly shifted my thinking about our situation and our daughter. In retrospect, I saw my feelings about our daughter's condition as simplistic and unfounded. What God could have caused a child to suffer for her father's actions? It was nonsense. In place of these feelings, I came to realize that there is an element of entropy, disorder, chaos in the world. Some things happen for no good reason at all. Cells divide, or don't. DNA strands may or may not have complete chromosomes. Shit, as they say, happens. But I could take solace in knowing that I wasn't alone in my grief, and that a Power greater than myself would and could bolster my spirit. It did, and made all the difference in the world to me.

I could not control the circumstances or reasons behind my daughters condition. Our years of searching for answers were ultimately fruitless, as no particular cause or syndrome could be isolated. The best our doctors could tell us was that Eden's condition was the result of a random mutation, but that in the future, a syndrome might be identified. Today, now that the human genome has been mapped, we'll probably continue some genetic testing, perhaps to determine if she was subject to chromosomal deletion.

What I've also come to believe is that children like my daughter can teach us a lot, if we let them. They can lift our spirits by helping us appreciate the simple things in this world, to view the world through their eyes. They can teach us patience, by helping us to appreciate how difficult what we take for granted is for them. But perhaps most importantly, they can teach us the pureness of love. When I look in my daughter's eyes and in her smile, and see the love that she cannot express in words, I can see what God intended in her creation. And I am grateful, always.

Sunday, March 21, 2010

My first reflection...

I am the father of two beautiful children: Eden, my daughter, is 11 years old. My son, Noah, is 8. When she was born, my daughter was diagnosed with static encephalopathy, benign external hydrocephalus, and global developmental delay. What this diagnosis means is she is profoundly mentally impaired, unable to speak, and has the cognitive capacity of an 18-month old child. It’s likely that she has some type of genetic syndrome which has yet to be identified.

As you can imagine, raising and caring for a child like Eden has been an experience unlike any we could anticipate while expecting the birth of our daughter. The past 11 years have been full of trials and tribulations, crises and emergencies, stresses beyond our imagining. Yet, now, in looking back on these experiences, I can say I’ve gained some perspective. More importantly, I and my family have survived. In the midst of most of these crises, we all had some serious doubts. There’s no question that these trials have taken their toll, not least of which is the abundance of gray hair I now sport. But ultimately we’ve survived, grown, and learned a lot along the way. We’ve also had a fair number of joyful and rewarding moments, too.

Raising a disabled child is a challenge no parent is prepared for. The manner in which you rise to the challenge, and cope, can ultimately make the difference between a miserable life and one filled with problems that you can overcome. The problems never cease. With a disabled child, the question is not if another crisis will occur, but when. My hope in starting this blog is to share some of my own experiences so that what I’ve lived through may help other fathers in similar situations. I don’t have any sage advice or secrets to overcoming the challenges. I struggle every day but count myself fortunate when the good days outnumber the bad. Lately, there have been more good days than bad, though that wasn’t always the case by any means. I'm very grateful for that.

The joys of being Eden’s dad have been more precious than any I could have expected. Watching her finally walk on her own when she was three, seeing her make meaningful eye contact with us and look at us with the intent to connect, teaching her to feed herself after years of spoon feeding, being able to make her laugh and hearing her giggle in delight. These are all things that most parents take for granted. Little things they know will come in time. With children like my daughter, we parents wonder if these little things will happen at all. So when they do happen they are a cause for great celebration. Every parent takes pride in their child’s achievements. The achievements of special children are all the more…well, special.

I sometimes view being the father of a disabled child like pledging a fraternity with a painful hazing process whose membership is a dubious honor at best – a club that no one really wants to join. Often times, I feel being a “special needs dad” can be lonely and isolating. It’s hard to relate to fathers of “typical” children, and certainly difficult to share experiences. “Oh, you’re daughter just said her first word? Mine doesn’t speak at all and probably never will.” When I meet another father of a disabled child, somehow we understand each other immediately. My daughter may be profoundly mentally disabled, while the other father’s child may have some other diagnosis, but we connect. I understand that path he walks and the “trouble he’s seen” like few others do. If this blog can help other fathers identify with my experiences, and maybe take some solace from them, then I think it will all be worth it. I hope, too, that writing this blog will help me “get out of myself” by sharing my burdens, and maybe “pay it forward”.

Unlike mothers, fathers of disabled kids seem to have fewer support resources. There are many more these days than there once were, so perhaps this blog can be one of those resources. I am also grateful for any feedback or comments you wish to post. Enjoy!