by: Shandra Umazar
I clicked on the email from Beyond Academic it read: I am pleased to inform you that Islah has performed exceptionally this year as a junior in the Integrative Community Studies Program here at UNCG. Her overall GPA places her class rank in the junior class as #1! This significant achievement means that she will be designated as Chief Marshal for the Beyond Academics Commencement Ceremony in May. I sat straight up, excited, happy and proud of Islah. Surprised? This was not a dream I had for Islah.
It’s hard to get motivated when you can’t see the light at the end of the tunnel. That was how I felt when my daughter was born 30 years ago. Birth announcements went unsent and we acted as if someone had died. We had her tested immediately and waited anxiously, hoping that the results would prove the doctor wrong. When the phone rang that evening and her diagnosis was confirmed, I just wanted to cry. Instead, Islah started crying and I realized that at that moment her needs were no different than her two older sisters. My husband and I made a promise that would we give her the best quality of life that we could, but we had no idea what that would look like. Words we never had to use before became part of our vocabulary; evaluations, early intervention, IFSP’s, IEP’s, intellectual disabilities back then referred to as mental retardation. Once using the word retarded loosely, I could not bring myself to say the word “retarded”. When she started school we learned about PL 142 now known as IDEA. We stumbled along with blind faith, all while trying to work and raise two other children. We had good days, bad days, happy days, sad days. Good school days, bad school days. Yes, I focused on things that she could do, but I also mixed them up with all the things that she couldn’t do at that moment and all the things she wouldn’t be able to do in the future such as having friends, dating and going to the prom, graduating and going to college. Nothing like being heartbroken before your heart is broken. Islah had friends, went to the Prom and dated.
Today I would tell parents the future is in the preparations you make one day at a time.
Today, I would tell teachers, administrators and service providers, to be patient with that new mom and dad. We come to you frightened, and with little knowledge of our child’s disability and the process that we are about to go through. We may use wrong words. We may be impatient, angry and demanding. But know this, we love our children and only want the best for them. We come to you not knowing that we are an equal partnership with you in planning for our child’s future. We expect you to be highly qualified in your field. We want you to be honest, patient and informative. Please do not take it personal when we ask questions or challenge you for answers. We want you to back up your answers with documentations, peer research, and the ability to give us the resources that we need. We come to you with the expectation that you love your job and that you respect my family and will treat my child as an individual. Together with the love and knowledge we have about our child and your professional knowledge, we can plan a bright future for our children.
Today, I would tell parents to take one day at a time. Start with the mind- set that teachers, administrators and service providers are there to help you. Set goals and have a plan. Obstacles will come your way at times, but you don’t stop. Find a way to get past those challenges including asking for help and keep going. Learn all you can about your child’s disability. There are Parent resource centers in every state; call them, there services are free. Learn about IDEA, The Individual Disability Act. Know your rights and your child’s rights.
Islah graduated from Beyond Academics in May of 2014.
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.