Sunday, March 25, 2012

The Big Day...

The waiting is the worst part.  It's only 1:30 PM in the afternoon and we're already exhausted.  Our big surgical day started at 4 AM.  We woke after a sleepless night and try to rouse ourselves to get out the door.  Bags ready, car packed and off we go into the wee small dark hours of the morning,  arriving at NYU Medical Center at 6 AM.  Text from Eden's school caregivers, they're on their way..almost.  Another call.  Where are we?    We are in the lobby, they, however, are at the wrong hospital.  Another 15 minutes and they're already at NYU's admitting office.  We're off to a great start.

After a circuitous route through several maze-like corridors, we meet Eden and her aides, waiting patiently for us.  Eden is an angel, listening to her MP3 player and watching Elmo on Sandie's phone.  Within the hour, she's brought to the nurse's station, checked for vitals.  We're introduced to the team who will be involved in the surgery -- nurses, anaesthesiologists, residents, and her doctor.  The surgeon is focused, alert, and very upbeat.  His visit is brief but helps reassure us.  The members of her team confide they would go right to him were they in our situation.  What better endorsement?

Everyone is very friendly, but asks the same litany of questions -- when did she last eat?  What medications has she taken?  Who's here today?  Mom, Dad, and two dedicated caregivers from the Center.  We're grateful for their presence, helping to manage Eden on a gurney, to help get her gown on, and even assist the nurse with administering her sedative.  At this point, they know her better than we do, and can certainly manage her better.  With Eden reasonably sedate, we answer important questions while trying to quell frayed nerves and tightened stomachs.  

Eventually, Eden calms down enough to head out to the O.R. Sandie suits up in her "bunny suit" to accompany her in.  Eden's school aides prepare to leave and I hug them with the utmost gratitude.  Friendly faces make the whole experience a bit more bearable.  Sandie returns, a bit shaken, tears welling in her eyes.  I had to bite my tongue while they wheeled Eden out of our admitting room, to fight back my own tears.  

And so, the waiting began.  Her surgeon told us the operation would take about six hours.  The waiting area is comfortable enough, but we're too tense to even nap.  Sandie's mom and Noah show up around noon and we go to lunch, trying to get some air and keep up our strength.  Fortunately, a very friendly nurse provides us with regular updates on the progress of the operation.  It looks like we'll be here until 3 PM, when she finally gets out of surgery.  Then, the real fun begins...

A lot has happened since my first entry at the hospital.  Eden's surgery took 6.5 hours but ultimately was completely successful.  Her surgeon came out to greet us, and showed us an x-ray that revealed her spinal curvature was 100% corrected.  It was truly amazing seeing the curvature corrected by rods attached to her spinal column.  After speaking with the surgeon, we raced up to the Pedicatric ICU to see Eden in recovery.  Post-surgical recovery is always a little scary, with all the IVs and tubes that are plugged everywhere, but we were assured she was resting comfortably as she appeared to be.  Even asleep, her neck and head seemed much straighter and well-aligned than they ever had been before.

Eden stayed in the ICU until Saturday afternoon, with my wife sleeping at her bedside overnight.  I came by early Saturday morning to visit and take over the bedside care, urging her out with my son and mother-in-law. Sandie looked exhausted, since sleeping in an ICU (without sedation) is almost impossible.  Noah was eager to see "The Hunger Games", so they took him to the movies while I waited for updates from the myriad of doctors.  One after another, I met with orthopaedists, pediatricians, nurses, physical therapists, etc., all there to look over my little girl to make sure she was on the road to recovery.  There were no post-op complications and she was fortunately not in much pain.  Since she was stabilized, the doctors decided to release her to the pediatric floor later Saturday afternoon.

In the evening, after they'd had a chance to go back to the Ronald McDonald House to rest (more on that later), everyone came back to check on Eden.  She was resting comfortably and without all the various Borg-like medical equipment stuck into her.  Going into the surgery, I think we were most afraid of how she would manage in the hospital bed. Gratefully, though, she seemed to be ignoring her IV lines and not trying to remove them.  With Elmo on TV and her MP3 player, she seems to be content to rest and let Mom and Dad dote on her.

I spent Saturday night at Eden's bedside, wanting to give my wife a chance to sleep.  I get maybe three hours myself, being woken nearly every hour for the pokes and prods the nursing staff save for the early morning.  I don't remember being this tired since Eden was first born. At 6 AM, I awake with a start as the nurse moves to draw her blood.  Eden doesn't flinch but I feel suddenly faint and need to excuse myself after it's over.  I can't pass out myself when it's Eden who's had the surgery!  I chalk it up to exhaustion and general aversion to blood.

Eventually Sandie comes to my rescue and we spend the day with various visitors, including one of Eden's fondest aides from school.  She helps when the physical therapist gets Eden off the bed and walking, which she does very well.  She definitely seems taller!

The rest of the day progresses quietly.  We've found more Elmo videos for Eden to watch which keeps her happy.  She's eating solid foods well so her appetite seems back to normal, though a bit slow.  We're just so happy Eden is staying in bed and being cooperative.  It's making the hospital stay much more manageable.  Sandie stays at Eden's bedside tonight while I head back to Mickey D's House to rest so I can take over tomorrow.  The place is truly a Godsend.  I hope tomorrow is as good as today!

Saturday, March 10, 2012

Hope and Trepidation

I’ve let this blog lie fallow for a while, far too long, in fact.  This week, I’ve felt compelled to take it up again, anticipating another potentially life changing event for our daughter Eden.  In about two weeks, Eden will be undergoing spinal surgery to correct a rather severe spine curvature resulting from her advanced scoliosis.  At this point, she’s at a 50% curvature, which means she leans noticeably to the left and drags one of her legs.  Her doctors say that it seems to be progressing and that by 18 years old, she might have a 100% curvature, impacting her mobility and overall physiology.  So, my wife and I resolved to have the condition corrected this year.  We’re told that her age is a positive factor for recovery, and that younger children heal easier.  If we wait, the condition would be much harder to correct.

Deciding to have Eden undergo surgery was a tough one.  She’s only been hospitalized once before, when she had a grand mal seizure at 8-years old.  Thank God she was treated successfully then and we’ve not had a recurrence.  Still, maintaining her in the hospital for those few days was an ordeal.  Whenever she regained consciousness, Eden would immediately try to pull out her IVs and throw herself off the bed.  Sandie and I took turns wrestling our little 8 year-old, who obviously didn’t understand what was going on and was probably pretty scared.  She was sedated most of her stay, and released early because the hospital couldn’t maintain her.  Eden was still affected by the medication when she got home and couldn’t even stand up (she unceremoniously and unexpectedly plopped over once in the living room!  At least we had the foresight to have her sitting on an exercise mat).

With the upcoming surgery, we’re going into it with great hope that it will make a significant improvement in Eden’s quality of life. We’re also told that she’ll grow two inches once she’s all “straightened out”, and there’s the promise that her mobility will improve so we won’t need to worry about this again.  Our surgeon has performed this procedure on numerous disabled children with excellent results.  Plus, the staff at her school, the Center for Discovery in Monticello, NY, has a lot of experience caring for post-operative children.  Frankly, they’re in a far better position to care for Eden after surgery than we would be at home. 

Still, with the hope comes more than a little trepidation.  Spinal surgery isn’t trivial, though our surgeon is a leader in his field.  I think we’re most concerned about the post-operative period when Eden is recovering.  If past experience is any guide, she’ll fight all the intrusive IVs and restrictive hospital environment.  We’re hoping she can be given medication that will minimize her agitation and ease her recovery.  Sandie and I are anticipating holding alternating shifts at her bedside for the week while she’s recovering.  I can only hope we can arrange for an aide to help out.

Eden’s school staff is very much on top of the ball and has a plan for when she returns.  We were worried that her penchant for dropping to the floor might injure her post-operative incisions or sutures.  The surgeon tells us that Eden won’t be able to damage the hardware he’ll be bolting to her spine, but our little girl is strong and determined.  Let’s hope her indomitable will doesn’t lead her to injure herself.

And so, we wait… the surgery is scheduled for later in March.  Until then, we’ve been attending pre-operative doctor's visits, for blood work, MRIs, x-rays, and the like.  Eden’s been cooperative with each of these appointments, which bodes well, we think.  We’re trying valiantly not to try to over-anticipate problems and approach the surgery with a positive attitude.  At this point, it’s the only thing we can do.  Watch this space for further updates as our surgical adventure continues…

Sunday, May 29, 2011

The Road Beckons...

Nearly each weekend since Eden's attended the Center for Discovery, we've brought her home to spend time with the family.  And nearly every weekend we've faced a constant dilemma -- what to DO with Eden.  Barely through the door at home, she'll usually race to her room, dragging me by the hand, eager to watch TV -- more specifically, innumerable episodes of Elmo's World.   Eden's been watching Elmo since she was a baby, to the exclusion of just about anything else.  And after 12 years, I can tell you, Elmo's voice gets a little grating.  Still, there's something about that furry little red monster that makes her happy, so we indulge her.  That said, after about an hour (or sometimes less), Eden gets antsy and pulls me toward the DVD player, insistently urging that I change the program.  The problem is, no matter what I change it to, she's not happy, and the insistent urging gets worse.  At this point, there are just a few shows even among Elmo's canon that she'll watch.

This all wouldn't so bad if there were other things we could prevail upon Eden to do.  But, there aren't.  Each weekend we spend together brings the same challenge of keeping her occupied and entertained.  Which brings me to the subject tonight's reflection.  You see, recently we've hit upon an absolutely wonderful activity that we can reliably count on to keep Eden's attention and bring her consistent enjoyment -- a simple car ride.  This simple yet effective activity has had a remarkable impact on our domestic tranquilty!

I recently spoke with a colleague at work who has an autistic son very much like Eden.  His son lives at home with his parents, who like us face the dilemma of keeping their son occupied, particularly when he gets agitated or antsy for whatever reason.  My friend's son will often bring his father his car keys, wallet and cell phone, in a gesture aimed to communicate one thing -- "Dad, it's time for a ride".   And day or night, early or late, his father indulges him, for even the briefest of rides seems to calm and soothe him.  When I heard what effect a simple car ride had on his son, I thought to try the same thing with Eden the very next weekend.

Sure enough, about an hour into watching the same Elmo's World episode, Eden had had enough.  She was becoming anxious, relentlessly pulling me into her room, gesturing for me to change her TV show.  I knew full well there was nothing else I could put on that would mollify her.  And frankly, having my fingers pulled out of their sockets while she tried to grab my attention was getting painful.  I immediately announced Eden and I were going for a ride.  Within a few minutes, her shoes and jacket were on, and we headed out the door.

At school, Eden's teachers regularly try to keep her occupied with physical activities to provide her with a stimulating educational environment.  Just keeping her moving, be it to help retrieve lunch for the class or gathering up recyclables to be sorted, seems to play an important role in her happiness and well-being.  Sure enough, Eden was only too happy to head out the door with me.  With her MP3 player in tow, she climbed into the backseat of our SUV so she and her Dad could hit the open road.

The effect was remarkable.  Where she'd previously been agitated and upset, now Eden was comfortable, happy and full of smiles as she listened to her music and serenely gazed out the window at the trees rushing by.  It doesn't seem to matter where we go -- I'll typically just pick some direction I'm curious to explore in Sullivan County -- as long as we're moving.  Maybe it's the picturesque scenery of the verdant Catskill mountains, or perhaps the feeling of movement and the freedom it conveys, but something about just being in that car makes her happy.

It's been wonderful to have a simple activity we can share that gets us out of the house and away from the TV.  Eden will listen to her music and take in her surroundings, while I'll contemplate the open road.  Somehow, the drives have a centering effect on me, too -- a chance to reflect and simply enjoy doing something for my little girl that brings her such contentment.  Granted, I'll keep our jaunts to about an hour at most, since even the amusement of a car ride has its limits for Eden.  Nevertheless, I'm always grateful to escape Elmo for a while, and get both Eden and myself a bit more centered.

Sunday, November 21, 2010

Fellowship of Fathers

One of my all-time favorite movies is The Lord of the Rings, which tells the tale of a simple Hobbit, Frodo Baggins, who is burdened with the unenviable task of destroying the One Ring, a force of great destructive power in Middle Earth.  Frodo is accompanied on his journey by eight companions who become the Fellowship of the Ring, to help him accomplish his task.  Together, the Fellowship endure numerous hardships, relying on each other for support and encouragement to ultimately triumph in their pursuit.

It was this image of fellowship that struck me recently while attending a support group for fathers of special needs children.  Here on Staten Island, this group meets once a month, sponsored by a local parent advocacy organization, Parent-to-Parent.  I’ve attended meetings of this father’s group sporadically over the years, but will usually attend when my wife Sandra reminds me.  The meeting is usually held at a local diner – the organizers believing, rightly, that fathers will turn out in greater numbers if there’s food involved.  For this most recent meeting, we had a fairly large turn-out with about 15  fathers attending.  Some were familiar faces who I’d met before, others were newcomers, yet all shared the common bond of having children with special needs.

After ordering our meals – we had our priorities, after all – we went around the tables (considerately arranged around a circle, King Arthur-style) introducing ourselves and telling a bit about our children:  their ages, disabilities, schooling, and any particular issues we were facing.  The moderator has an adult child in his late 20s with cerebral palsy, who had lately been struggling with numerous infections.  Given his condition, he was particularly susceptible to them and had been hospitalized quite frequently.  The assembled Dads were all quite concerned, asking questions about his course of treatment, medications, and overall welfare. 

As each father shared his part, whether a struggle with behavioral issues or difficulties finding appropriate therapists, our assembled fellowship responded with keen interest.  You see, we’d all been there before – with our own battles with well-meaning but often inept school administrators, or with children whose behavioral issues were driving us to the brink of despair.  Sometimes, helpful suggestions were offered.   Other times, we provided simple affirmation that someone in our group had been in precisely the same situation.  Whether the feedback provided solutions was secondary – the very fact that a gathering of men had the opportunity to unburden themselves among fellows who innately understood their difficulties, that was what made our group special. 

For most of us, there was a certain catharsis in being able to just speak aloud the difficulties we faced.  Maybe someone knew something about the drug their child was just prescribed?  Perhaps another knew of a speech therapist that might have some hours available for a new child?  Was anyone else struggling in their marriage?  The last concern was a too frequent refrain.  Raising a special needs child can be one of the most taxing challenges to a marriage.  It is a well-known statistic that parents of special needs kids are more prone to divorce.  Some of us were already there, or headed in that direction.  Others were still married, but in different phases of acceptance about our children’s disabilities.  A few of us, myself included, thankfully, had spouses who saw eye-to-eye with us on most matters concerning our kids.

One particular father who shared his parenting struggles sounded so much like my own.  His daughter was a bit younger than mine, but suffered a form of similarly severe developmental disability.  Her behavior was out of control, with frequent non-compliant outbursts where she could not be physically moved.  By what he’d described, his wife was having difficulty coming to terms with her daughter’s condition, though he fully realized how severe it was and how progressively hard raising her would be.  He mentioned remembering a father who had explored residential schooling as an option, and was seriously considering it for his child.

As it turns out, that father was me.  I responded to his comment by affirming that I was, in fact, the dad he was thinking of.  I went on to describe what a difference enrolling Eden in the Center for Discovery had made for her.  The moderator of our group, a social worker himself, attested to the benefits of a complete therapeutic environment which the Center provides.  I felt for him, thinking “there but for the grace of God go I”.  My daughter sounded just like his – tempermental outbursts, self-injurous, unable to make academic progress due to behavioral issues.  I hoped to offer him some encouragement, as we all did, that there was indeed reason for optimism.

After the meeting, I stuck around a bit to speak with him, and offered to talk with him more about the Center and our decision to have Eden attend a residential school.  I even suggested his wife might talk to mine, since she’s a licensed social worker who does service coordination for special needs kids.  Most of all, I just wanted him to know he wasn’t alone.  I think that was something we all took away from our meeting, the sense that, despite our individual difficulties, we could spend a few hours in good fellowship knowing we were all doing the best for our kids.  We were the lucky ones, who had the sense enough to seek out companions for our journey.  I hope we continue to find more fellowship along the way.

Wednesday, July 7, 2010

He's starting to notice...

First, my sincere apologies for being such a lax blogger over the past few weeks. I'm grateful for all the encouraging feedback I've received from my readers and will endeavor to be a more regular contributor to the Blogosphere. Your thoughts and reactions are VERY important to me and I truly appreciate all the encouragement.

Recently, we had the pleasure of meeting another family whose daughter has just started attending the Center for Discovery, where Eden goes to school. The family has a young boy close to my son Noah's age, and the two hit it off almost immediately. They had so much in common -- a fascination with Legos, a shared love of science class, much derision for math, and sisters who were both disabled. Finally, Noah had met another boy with a sister like his own, surely another important commonality that the two boys could bond over.

My son has gotten to the age where he's begun to notice the reaction others have to his sister when we are out in public. At the tender age of eight, he's picked up on the rude stares and discourteous gawking that some adults and most children will do when my daughter is out in public. His reaction brought me back to my own feelings about first venturing out with Eden. When she was much younger, the attention that Eden would draw when in public was very hurtful to me. At first, Eden could “pass” for a typical child in her stroller without eliciting reactions from strangers. The older she got, however, the more she “stood out” and her disability became more noticeable. She would vocalize inappropriately while we were at the mall, which drew stares from other shoppers. Her low muscle tone would make her mouth gape open and cause her to drool excessively. Unlike other kids her age who would meaningfully take in their surroundings and try to make sense of it all, Eden stared vacantly when we took her out shopping or to the park.

The pitying gazes inevitably came. Adults, particularly other parents, in whom recognition dawned when they looked at my “poor” daughter, and then at us, the unfortunate Mom and Dad. At first, the looks cut like daggers through me. I was angry enough without engendering the pity of others. I felt such discomfort with the reactions of other people to my daughter’s condition that I would try to avoid going out in public when I could. Other parents would run to the park with their children; not me. When I would relent and take Eden out to the swings, I would push her like the other parents would. But as their children would smile and hearten their parents by their enthusiastic reactions, my infant daughter would just swing back and forth, seemingly emotionless. The other parents would try not to be overt, and would often quickly look away if I met their gaze, or worse yet, give me an awkward smile that thinly veiled their true thoughts.

In later years, when my daughter became self-injurious, being in public with her was probably the most painful. We would be out at an amusement park, trying to enjoy a family vacation, and my daughter would melt down in tears, throwing a fit, and smashing her already bruised arms against her stroller to the point that she became black and blue. On particularly bad days, she would scratch herself to the point of bleeding. During these moments, the unconcealed horror on other parents’ faces was too much to bear, let alone while trying to deal with the crisis of my daughter’s behavior.

Eventually, I started building immunity to the reactions of others. I would push my daughter’s adapted wheelchair through the mall and look right through other people, studiously avoiding their gazes so not to notice their reactions. Today, I continue this approach of seeing other parents as if they were transparent so as not to have to acknowledge their reactions at all. Better this than to let the misplaced pity get to me.

But now, my son Noah has begun to notice these reactions. He’s a very perceptive kid, and feels a bit self-conscious about being in public with his sister. He sees how rude some adults are, but mostly he notices children, who have no filter on their emotions and stare shamelessly. Noah comments on how rude they are and how uncomfortable it makes him. His mother and I try to explain that children are often just curious about anyone who is different than they are. It’s good advice, we think, and frankly counsel that I should probably heed more often myself.

Nevertheless, their looks bother him, as does the fact that none of his other friends have disabled siblings. He’s a bit jealous, pointing out how his friends have sisters and brothers who they can play with, though he doesn't. Eden won't really acknowledge her brother or any other children, for that matter. One of the reasons we got a dog years ago was for Noah to have someone or something to play with in lieu of a typical sibling

It’s a bit of a lonely existence, I feel, being the sibling of a disabled child. You don’t have the same experiences growing up as your friends do. For this reason, we recently got Noah involved in sibling support group. Once or twice a month, a group of children Noah’s age will get together to play, eat pizza, and, through the help of a social worker who facilitates the group, share their feelings about what it’s like to have a disabled brother or sister. Noah loves the group, and rarely misses a meeting. He’s finally found other kids who are as “weird” as his sister – who know what it’s like to have a sister who makes loud, inappropriate noises in public, or who doesn’t really care about playing Lego(!). I think it gives Noah a sense of belonging and an understanding that he’s not alone. Growing up is tough enough without the stresses of having a disabled sibling. Now at least Noah has found a few other children who know “the trouble he’s seen”. :-)

And as for Noah’s new found friend, the boy whose sister now attends the Center for Discovery, I can only hope that the boys continue their burgeoning friendship. Finally he can have a friend who visits his own sister at the Center and can share his experiences – or more likely, just go swimming and talk about which of the Center’s many animals they like best!

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.