The Ups of Downs: Believing In Santa at Age 63

By Guest Blogger Robbie Powers, Sophomore at Mt. Tabor High School

Imagine fulfilling your biggest dream, the one you have had all your life. When Eli Remer was 15, he climbed 70 miles of Mt Everest in just 10 days. Tim Harris owned his own restaurant which was famous for breakfast lunch and hugs. What is more incredible is that both of these people have Down Syndrome.

My Great Uncle Steve had Down Syndrome and who lived to be 63 years old. I chose to do my English Research Project on Down Syndrome this year because of him. I learned that the evolution of the treatment during his lifetime was extraordinary.

It is relatively easy to spot someone with the characteristics of Down Syndrome. You will notice an eye slant, smaller head, thick short arms and legs and low muscle tone. Slurred speech is also common. Emotions range from sadness to joy, just as you and I. But there is a strong tendency toward joy, excitement and happiness.

The Down Syndrome population also has a strong need for routine schedules and can be viewed as stubborn if their routine is broken. Uncle Steve always had a ham sandwich every night at 9:00, and it was not good to be around Steve when he didn’t get his sandwich. Sixty years ago these traits presented families with challenges when it came to creating an independent and healthy individual.

In 1954, the average life expectancy for a baby with Down Syndrome was 10 years. Today the life expectancy is 60. The three main causes of death in Down’s patients are congenital heart defects, fighting infections and leukemia.

Many Down Syndrome babies are born with congenital heart defects. The first common defect is an atrial septal defect where there is a hole between the top two chambers of the heart. The second is a vsd hole in the bottom of the heart. Both can now be fixed with simple surgery thereby allowing Down’s patients to live a more normal life.

Down Syndrome individuals are 12 times more likely to die from an untreated disease or infection than others. Advances in identifying diseases have helped reduce this number.

In 1960 when my Uncle Steve was ready to start school, there were no classrooms for him. In fact, most Down Syndrome individuals were put in Institutions. In order for him to go to school, my grandparents had to petition the school board, locate 15 other people in the county with Down Syndrome, and find a teacher willing to teach these individuals.

With much routine and determination from Steve’s teacher, he was able to learn to read and write, specifically read the sports page, write about the latest Duke game and write letters back and forth to Coach K.

    

Today, through legislation, schools are required to supply appropriate education to all children. This means that children like Steve receive a classroom environment designed for their needs, providing them with speech and occupational therapy to help with communication and writing. Down Syndrome individuals often graduate from high school and some are now even going to college.

Conditions have also improved as far as acquiring a job and getting paid, so they could better support themselves. When Steve left high school in 1975, there were no job opportunities for people with Down Syndrome. Instead, my great – grandparents and friends worked to start a non-profit sheltered workshop where Steve and others like him could sort screws, nuts and bolts for old computers from IBM.

Today, many options are offered for mostly part time work. Fifty-six percent of all Down Syndrome patients work in paid positions, mostly in jobs like hospitality, office support, and sorting and packing.

As the quality of life improves, I am grateful for the time I had with my Uncle Steve. For my visual project that accompanied my research paper, I made a collage of pictures of Steve on the letters that spell the word happy because I wanted to do a tribute to Steve, show how important he was and how Happy he made everyone around him. I also put the pictures on top of newspaper because I always remember him reading the sports page.

The most important thing I learned about this topic is that all people matter. No matter who or what you are, you contribute to the world. I also learned that if there is no path, sometimes you have to create your own.

When I was a kid, I always knew my great Uncle Steve as the adult who couldn’t tie his shoes and had trouble speaking. I also knew him as Duke’s #1 fan. Steve sat behind Coach K for 38 years. He was even in Sports Illustrated. He saved his sisters’ life, knew all 35 family members’ birthdays, and made Christmas magical with his continuing belief in Santa. I remember Steve for his unwavering love and joy for everyone around him. In a world where achievement and fame are considered highly important, we all need a few more Steves.

 

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