The inspiring story of Sara as told by her grandmother…
My daughter Dara was born with Charge Syndrome. My husband and I did not even know what Charge was, but we did our best raising her. We loved Dara, taught her boundaries; and she just adored her dad. When he died, it simply devastated Dara. She married the man who would become Sara’s father in 1998. They had Sara and with both of them being deaf, every day was a challenge for them. Dara was divorced from Sara’s father 8 years later, and shared custody with him.
I did not have contact with my daughter during those early years. I knew Sara received services from the Commission for Children with Special Health Care Needs (CCSHCN). She was in the Danville School for the Deaf for a period of time. My daughter lost her partial custody to Sara’s father around 2010. Sara and her dad moved often, which did not provide the kind of stability she needed. Sara missed school way too much and failed 3rd grade.
During that time, I was hoping to get custody of Sara, and finally convinced Sara’s parents to allow me to raise her. My only stipulation was they had to give me legal custody. When she came to live with me, she was wearing hearing aides and glasses. Her general health was good except for needing dental work. With the help of the Shriners and the CCSHCN, she had spine surgery to place rods in her back. We worked hard on her self-help skills and establishing a routine. She adapted quickly to the transition. We lived a rather isolated life in the country, but Sara had friends at school.
We were on our way!
Sara came to live with me at 8 years old, and she is 16 now. Time is slipping away. I am a 69-year-old widow trying to make decisions that will impact her for the rest of her life. She also lives a life of challenges, but takes them on “one at a time”. Showering is a real struggle for her due to balance issues. She has some sight in one eye, and no vision in the other. However, Sara remains happy, and is a social butterfly. She loves school, especially history. And of course, she could not do without her iPad. Her teacher limits the use of it at times based on her behavior. Sara has an phone and listens to music constantly. She received BaHa implants which have added to her quality of life. I really appreciate the iPad she received at KY Deaf Blind ECC Week with all the apps selected to meet Sara’s individual needs.
My goals for Sara are 1) a good education, 2) have lots of friends, and 3) live a life of inclusion out in the community. With her infectious laugh, I have no doubt she will make many friends through the coming years. She loves to be outside and we walk often together. She has been in Special Olympics for several years and is looking forward to competing in Track next year, which will be a new experience for her. Maybe all that walking will finally pay off.
With the sole responsibility of Sara, I have recently started thinking “what will happen to Sara when I am gone?” I want her to live independently as much as possible, so I know I need to start exploring the possibilities for her future. Many years ago when Diane Haynes, the director of the Deaf Project at that time, began to talk to me about “Futures Planning” for my daughter Dara, I didn’t think much about it. But now that I am older, I know I must plan for Sara.
This week with the Deaf Blind staff, therapists, interveners and other families of students who are deaf blind opened my eyes. It made me realize that students with even more difficult challenges than Sara were participating, learning, and getting out in the community. I am amazed at the parents who work so diligently to make sure their child takes every opportunity for continued growth and development.
As I told my story to one of the Kentucky Deaf Blind staff, I can hear the distinctive laughter of my grandchild, and the speeding wheel chair of one of her friends. I hear the encouraging language of coaching used by the therapists, mentors and others. They are providing instruction, determining the right adaptive equipment for each student, and assessing skills as they go. My Sara decided what she wanted to cook, made a grocery list, and went to Kroger to purchase what she needed with money in her purse. And then she cooked! The encouragement of everyone was amazing – they didn’t do everything for her but encouraged her and had high expectations, which made all the difference. Sara went out with the group into the community and explored the Aviation Museum, learned how the airport process would work when she chooses to fly. She loved the experience of making music with her friends! The week with the Kentucky Deaf Blind Project, UKs Technology and mobility specialist, therapist, and graduate students taught me as much as they taught Sara. There is hope out there for Sara, and that is what I had been looking for.