Thursday, April 14, 2011

Less of the Shadow and More of the Sun

A couple weeks ago I posted a story about Kirill, a young Russian boy with Down Syndrome whom an American family is seeking to adopt.  As of now, the adoption process is at a standstill because a Russian judge has rejected their application on the grounds that Kirill is "not socially adaptable."  The judge has no problem with the family and has stated she would approve their adopting a typical child; the rejection is based solely on Kirill's special needs.  The family is appealing the decision.

I was deeply emotional after reading this story.  My brother was diagnosed with autism in 1990.  Even a mere 21 years ago, that diagnosis was much rarer than it is now, and most people had never heard of it.  We ended up moving an hour away from our hometown in northeastern Ohio to western Pennsylvania so that he could attend a special school, because none of the local programs could accommodate him.  When we moved there, my three-year-old brother was nonverbal and barely interacted with us.  He threw frequent and severe tantrums; at least one time, my mom locked herself in the bathroom just to escape for a few minutes.  My dad commuted an hour each way to work in Ohio every day.  My brother's school was 45 minutes away from our house, and his van ride there took twice that amount of time since the driver had to pick up several other children, some of whom were in wheelchairs.  None of our extended family members offered any help to my parents, and many of our family friends slipped away too.  (Almost twenty years later when I was writing my master's thesis on computer-mediated support groups for families of children with disabilities, I discovered that this is a very common, though by no means ubiquitous, experience.)  It was a dark time for my family, to say the least.

The darkness, of course, didn't last forever.  Little by little, through the grace of God, the impenetrable shell that had hidden my brother's personality, thoughts, and feelings began to crack.  He learned to talk and hold a conversation.  He looked us in the eye when we addressed him, and he smiled when he saw us.  He learned to read and write and do basic math.  Five after our initial move, my parents relocated our family back to northeastern Ohio, deliberately choosing a home in the school district with a good reputation for its special education program.  My brother was enrolled in public school and was able to spend part of his day in a mainstream classroom.

Now, my brother is a young man.  Today is his 24th birthday.  He is an extraordinarily loving, jovial and well-adjusted person.  He is able to hold down a part-time job, to which he is steadfastly committed (to illustrate this, he will not permit my parents to visit him at work, lest they distract him from his duties).  The word autism comes from the Greek "autos," meaning self.  People on the autism spectrum exhibit an extremely wide range of traits and abilities, but one unifying characteristic is a tendency to withdraw into oneself, which in turn impairs social interaction.  While it's undeniable that my brother is not able to interact as a typical 24-year-old man, he is remarkably socially adept: he expresses (genuine) great pleasure when seeing someone he knows, he addresses everyone by name, he inquires as to how people are doing, he carefully introduces people who don't know each other, and he makes impressive attempts to empathize with others' joys and sorrows.  He makes people feel good, and they absolutely love it.  Time and time again, people he knows through work, school, and other places have run into my parents at the grocery store or the bank and gushed over him so profusely that it was almost embarrassing.  (Almost.  Every compliment he receives is a shining jewel to my mother, and she graciously and joyfully accepts each one.)

Has it been easy?  Of course not.  Our family life has always been structured to accommodate my brother's needs, a fact which has undoubtedly contributed to his happiness and comfort.  His routine is extremely important to him, so it is hardly ever disrupted.  We still have basically no traffic with our extended family, and my parents' social lives are quite restricted.   My brother still lives at home, and he will never be capable of living independently.  While many couples my parents' age are either looking forward to or enjoying empty nests after raising their children, my parents know that they will be taking care of their son for the rest of their lives, or until they are physically unable to do so.  My mother especially has devoted her entire life to making sure his life is good.

Yes, it has been challenging for my parents to raise a child with special needs, and it has been challenging for me to be the only sibling of someone with autism.  But it has also been incredibly rewarding for all three of us to have my brother in our lives.  He is an amazing blessing.  When he first started exhibiting signs of his disability and was diagnosed, my parents felt like they had lost the child they thought they had.  Now that we know the boy he always was, they cannot imagine a more perfect son, and I cannot imagine a more perfect brother.  We don't have a storybook family, but the difficulties we face are always eclipsed by the joy he brings us.  My brother is an amazing source and inspiration of love, a love that makes the people who know him better for having him as a part of their lives.

When we moved back to Ohio after living in western Pennsylvania, one of my brother's most beloved teachers who had known him that whole five years sent my family a card expressing how much he would miss him.  On the front was a verse that eloquently captured the spirit of those five years and all the ones that were to follow, as we uncovered more and more of the beauty of my bother's soul:

I believe we are here for a reason, 
I believe that as each day unfolds, 
We see less of the shadow and more of the sun, 
Less of the tarnish and more of the gold.

Happy birthday, little brother.

2 comments:

  1. Love that picture of you two! It's so sweet!

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  2. This is a really beautiful reflection. My mom was really sick from age 18 on, basically, and she lost most of her "friends". She knew the ones who kept coming around, and offered to take her to dialysis, were her real friends. It happens all the time.

    But I am so glad that your brother has had the gift of a loving, accepting family. Your mother sounds like a saint. :)

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