by Shandra Umazar
Almost 29 years ago, my husband, Islah and I sat in the conference room at a big long table. We were on one side and the Genetic doctors were on the other. We sat quietly as the doctors told us all the things Islah would never do. What stuck out most in my mind was telling us that she would never be able to live alone. I remember how hard it was to fight back the tears. For some reason, I tried hard not to show any emotions one way or the other. I also remember as we left the office, Islah, only several months old, started babbling. Now 29 years later, I know what she was saying, “I am going to prove you wrong”.
Today, Islah is a sophomore at UNCG, and living in a furnished, three-bedroom off campus apartment along side other college students. Thanks to a program called “Beyond Academics” she is learning independent living skills to help her live successfully in her community. Looking back, I realize this has been a process of dreaming big and learning to let go. I remember when Islah was learning to walk, she would slap my hand away determined to take the first steps alone. In high school she wanted to come home from school and not sit at my job waiting for me to get off from work. Her bus driver assured me she would make sure she got in the house and locked the door. She would only be alone for a couple of hours until her dad got home. Islah finished high school at 18 years old just like her siblings and wanted to go to college. She enrolled in the Compensatory Education program at CPCC, and went there until the opportunity to attend Beyond Academics. After high school, Islah also participated in a program called Partners in Policymaking. It is a great program that teaches self advocates and young parents how to effectively advocate for themselves and their children. She learned that there are all kinds of disabilities. It was there she learned to be a self advocate and accepted having Down syndrome. Islah taught us to have confidence in her and to let her try no matter how hard the task might be or whether she could complete the task. I realized that the fears for Islah are no different from the fears I have for my other children; it just feels different because of her label. Teaching everyday skills and functional social skills in an inclusive environment, is so important for our children with Down syndrome in making steps to independence. Letting go is not easy. The unimaginable has become a reality. Islah is now living away from home and family, making decisions and being responsible. With supports, she is experiencing college life, and hanging out with friends and classmates in class and out of class. One weekend her sister and I drove up to Greensboro to have breakfast with her and while we were there, her friends came over to visit. How cool that is, we thought, remembering the hours she would spend in her room watching TV, or waiting to be taken to a program. It is important that parents and the community give our children the opportunity to grow and learn and become productive citizens in their communities.
Shandra Umazar and her husband live in Charlotte, NC. They have four children, three girls and one boy. Her third daughter, Islah was born with Down syndrome. They also served as a foster family. She has served on several Boards including the Exceptional Children’s Assistance Center. After Retiring from AT&T, Shandra has worked at ECAC for the past fourteen years as a Parent Educator and Librarian.