Wednesday, December 22, 2010

Kaleb's Story

I just found this document on my computer which I wrote years ago (5/2006). It expresses how sometimes even the worst tragedies can have a silver lining in them eventually.

In our adoption of Kaleb Yeabsira at the age of 21 mos from Ethiopia in Aug of 2004, it was both Kaleb’s and his new family’s good fortune which brought us together. Kaleb was fortunate to be one of the few children who would escape from a life of orphan-hood in a country plagued with the severest poverty and disease epidemic into a country with endless opportunity and a family to love and care for him. His new family found themselves equally fortunate to have been graced with an adorable, sensitive, and vibrant and child we so desperately needed to brighten up our lives.

Six years ago, when John and I were young and somewhat naive we made the plan to start a family. Without much question we just assumed and planned on having several children. In 1997 we were blessed with the birth of our first child, Kearney. She was beautiful and healthy, or so it initially seemed. Fifteen months later it became painfully obvious that she was not meeting developmental milestones and was slipping into a world of her own. Five months later came the dreaded diagnosis, Autism. We were traumatized, terrified of what this meant for our precious daughter. Then came all of the questions, why?, how? What next? There weren’t any definitive answers to any of these due to the fact that this neurological disorder remained largely a big mystery, under funded and under researched. We became consumed with the task of trying to help her maximize her potential. The prognosis for a child diagnosed so young was also another big question mark. We had to pursue all possible avenues of treatment intensely during these early years to give her optimal outcome. It was highly stressful and remarkably frustrating as the results from most of her interventions were minimal. Through her 30 hours per week of 1:1 teaching using the specialized educational format of Applied Behavior Analysis she made limited gains despite having a very dedicated team of teachers worker with her, headed by her Mom.

As a parent, Autism is a particularly heart wrenching diagnosis. Imagine a world where your child NEVER calls you Mommy or Daddy. Can’t tell you when he/she is in pain. Can’t tell you anything that happened to them or anything they are feeling. A world where your child can barely communicate anything, even through alternative means. Where your child is entirely oblivious to safety rules (runs off into traffic without blinking). Where learning the difference between the concept of yes and no is impossible to maintain. Due to the emotional pain and seemingly endless struggles we faced, the idea of having another child was only a distant thought Though we felt we desperately wanted to have the opportunity to experience parenting a “typical” child we were unable to make the leap to have another child. There are no genetic tests for Autism. The risk for us would be 20% above average. Though anyone who knows us can vouch for the fact that we love Kearney beyond words, we knew we would not be doing her or us any favors by having a second Autistic child. The risk was just not worth taking. It was a sad day when we made that decision. Additionally, during this time we also experienced other severe losses as John’s best friend and “irish twin” brother had died suddenly of Cancer at the young age of 30 after suffering for five years with extremely disabling schizophrenia. Two years after his death, John also tragically lost his beloved mother also to Cancer at the young age of 60.

Our family was desperately in need of hope and positivity. Then came the idea of adoption. Like a light out of nowhere it occurred to me that adoption might just be the perfect answer for us. It would allow me to avoid a stressful 9 month pregnancy fraught with suspicions about every possible chemical I might be exposing my unborn child to, and the inevitable cloud of fear that would loom over us for the following 24 months as we would obsessively scrutinized the baby’s development. That was enough to get me to my first adoption information meeting at WHFC.

After attending the meeting my mind was made up. I learned about the children…too many of them without families. This was the right thing to do, for reasons beyond the selfish ones that initially brought me to the meeting. I learned that the process was not impossible, as I had once mistakenly believed. I learned that adopting an older child, thus avoiding those years of ‘waiting to see’ could also work for us. I left that meeting empowered with options and already feeling enthusiastic about how this was also a decision we could feel proud of. All families come to make their decision to adopt from unique circumstances and life experiences and these were ours.

Nine months later, our son Kaleb came into our lives at the beautiful blossoming age of 21 months. Perfect, does not not adequately describe how fitting the match was. He was and is everything we could have ever dreamed of. Not only is he developing typicially, he is a social wonder boy, unnaturally bright and talkative, caring and sensitive to others, and always fun to be with. His language took off effortlessly, simply flooring us, after our seven years of struggle trying to teach Kearney basic words. Initially the transition was bitter sweet as we got a real taste of what our daughter (and us) had been brutally robbed of by her Autism but over time we have adjusted and are able to appreciate the wonder of Kaleb’s abilities with less shock.

Sometimes bad things precipitate joy we could never have known.

Wednesday, September 22, 2010

Do you think you know what Autism is? Think again. Please watch this.

I've been wanting to make a video like this for a very long time. It has burned me up over the years how it seems that much of the world thinks Autism is just a mild disability like dyslexia, or a savant syndrome like Rainman. I wanted to open as many eyes as I could, so that people will see that Autism is a cause worthy of attention, and in desperate need of research. Thank you for taking your time to watch. Please view in full screen mode.

Donations graciously accepted via the following link:
Walk NOW Greater Boston

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