Friday, April 3, 2015


My friend Nancy and I talk about our "quirky" sons. Of a similar age, Nate and Allen have both had learning challenges caused by physical maladies. They've been teased and bullied in school, but both are sweet young men who continue to expect the best out of themselves and others.

Allen's issues were caused by elevated blood ammonia, a situation in which the liver does not adequately process ammonia products found in food--particularly protein--and releases the ammonia into the bloodstream. This has the potential to damage cognitive processes and can cause learning disabilities, tremors, confusion, and a condition known to all mothers of teenage boys--with and without high blood ammonia-- "stinky feet." Elevated blood ammonia can happen to anyone at any age. Left untreated, it can lead to liver failure.

While tests of blood ammonia are routinely preformed on newborns, we did not discover until Allen was 4 that his ammonia was four times what it should be. We were told to control his protein intake to decrease the ammonia levels.

For the most part, Allen was an easy kid. The youngest of our three, he demanded very little attention. He required an adapted curriculum in school and had difficulty with new situations. Allen was only 8 when his father began to exhibit signs of clinical depression and just 14 when the car accident permanently disabled and damaged his father. When I was a Pennsylvania Writing and Literature Project Fellow back in 1998, I wrote a story about Allen called, "Scenes from a Hero's Life." To me, Allen has always been a hero. He handles the challenges of his life without complaint.

Allen's early diagnosis was bleak. I was told, when he was 5, that he would never be able to live an independent life. His sister and I worked hard to help Allen have as much independence as possible. Despite the prognosis, Allen earned an Associates of Arts in Applied Computer Technology. He's never been able to find a secure full time job, but he always works. Despite Ron's ups and downs, Allen and his dad are buddies. Years ago, we began referring to Allen's peculiarities as "quirky". We love him for who he is.

I've thought of Allen as my neglected child. Ron's car accident and prolonged illnesses took much time and attention. Never the squeaky wheel, Allen took what "Mom time" he could get.

We had a bit of a lull in the Ron department over the winter, and I began to wonder if there might not be more we could do for my fine and quirky fellow. I went on line and looked up Occupational Vocational Rehabilitation, filled out the application, and was thrilled when Allen received a letter two weeks later. Getting an appointment was not easy--and Allen needed some coercing--but we finally met with a case manager on April 1. And, it looks like Allen will be eligible for some services. He will need a neuro-psych evaluation and then he can apply for Social Security Disability and Medic-aid. It will take months to make it all happen and a continued explanation to Allen of what is going on. But, my mother's heart is glad that Allen might have a chance at a brighter and more independent future.

I guess we're all a little quirky. I live with several who are. Allen's issues with high blood ammonia and Ron's car accident shook, but did not end, our world. My son's struggles and refusal to quit inspired his sister, Bonnie, to work with developmentally delayed children. And I know that I am a better and more sensitive teacher for having had this blue-eyed bundle as my youngest child.

I'd like to end with one of our favorite "Allen stories." On the occasion of our 25th anniversary, Ron and I renewed our wedding vows. Each of the kids said or did something special. Allen's tribute to us was a short speech about "courage". He told the entire congregation that what he had learned from his parents was the meaning of the word, of hanging in there when the going got tough, of not giving up on the people you love.

Right back at you, kid.

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