The Gift of Defying Expectations by Joel Henderson
I have written this story for and about my daughter Demra. I wrote it as she lived it. The information is accurate, and I hope I have put it as she would have if she had written it herself. The following is her story.
My Name is Demra. I was born in Tangier, Morocco. My parents were expatriates living in Tangier. When I was two months old, my mother took me to Baltimore, Maryland. I was not developing normally, and the doctors said I would never be able to do anything, and I would not be able to communicate with or know anyone. They said I should be institutionalized.
The family contacted my father in Tangier and asked him to come to Baltimore. When they told him what the doctor said, he was devastated. Lucky for me, I was able to communicate with my father and let him know that I could understand. I was also able to have him understand that while I had limitations—so does everyone—they are simply different.
My father took it upon himself to be my arms, legs, and voice, and for the first time, he knew why he was on this earth. For six or seven years, I rode on his shoulders wherever we went. My communication with him grew even though I was not verbal. He says he knew our communication was real when I was able to let him know I had to go to the bathroom.
My family was trying to find ways I would not have my limitations. They tried something called patterning that was supposed to help me walk. It did not work, and I did not like it. The next attempt was the Upjohn School in Kalamazoo, Michigan. My father applied for graduate school in Michigan and was accepted. We were in Michigan for about five years, and I was getting bigger, and the snow and steps were becoming a problem, so we moved to San Diego, where I attended the Sweitzer School designed for severely handicapped students. I went on to high school, and by using the special education program, I finished, but still could not read or do math.
When I was about 22, I told my parents I wanted to live on my own. That meant with support, but I would have my independence. This would be the beginning of a new chapter in my life.
I joined a daily program at United Cerebral Palsy (UCP), and I suppose that is how Creative Support Alternatives found me. They produced a program that would pair me with a roommate who would provide my assistance. We got an apartment, and I had my first taste of living away from my parents. Luckily, they kept my room the same because my roommate found my care too difficult. My parents had warned that one person would not be able to provide my care. I returned home.
Creative Support Alternatives was not ready to give up. They came back with another plan. There would be two roommates this time, so the care would not be so difficult. I moved into another apartment, but during the interval, I obtained a service dog named Hess. He was a Golden Retriever, and he was great. I had him for a couple of years before my help found he was too hard to take care of, given my circumstances. With two roommates, things went a little better, and I stayed in the community for almost two years. Once again, my old room was available. I remained with my parents until a new plan was developed for me. This time I would have a team of five helpers. They set up a schedule so no one person was overwhelmed. This is the system we use today, except nine people are on the team, so the main five can be covered if needed.
Over the years, I would go to day programs where they had classes, exercise, and social time. In the early years, it was the UCP program; in recent years, it has been The Arc. Now, I go to Gi Gi’s Playhouse for people with Down syndrome. I help out there, and I love it.
During my life, I have had great experiences. There are way too many to put in this short story. But a few are worth mentioning. My father and I walked from San Diego to Los Angeles. It was just the two of us, and he pushed my chair and did everything we needed on the trip.
We were going to meet Shaun Cassidy at Universal Studios, but he was not there. They gave us a free tour to reward us for the trip. We made the trip a second time with a friend and with help from others providing food. This time, Shaun met us, took us to his house, and gave me several mementos. It was great. He found out about me through a woman in Coronado, CA who read a newspaper article about our planned second trip. She contacted her granddaughter, who worked for Shaun, and they arranged to meet us. I met his wife and children. I was very happy. During this time, I was also lucky enough to go to live TV shows and meet the stars backstage. I met Henry Winkler, Mackenzie Philips, and Donny and Marie Osmond, to name just a few.
I was also able to do lots of things in the community. I was a greeter at the swap meet, I had a special tool that let me roll silverware at a restaurant, and my aid and I created Demra’s Delights a baking business that I still do today.
In short, I have lived in the community and have done many things, contrary to the doctor’s early prediction, who said I would not know anything or be able to do anything.
I am sure glad my dad believed in me.
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