a. How does it feel to be the parent of your child?
I feel so lucky to be Taylor’s mother. She has taught me so many things about life, perseverance, strength, and determination. I never really knew the meaning of those words until she showed me what they meant. Taylor was born almost completely blind. As a baby, she wasn’t responsive to visual stimulation and it took an abnormally long time to crawl. As soon as we noticed that something might be wrong, we took her to the doctor. I have never felt anything so painful than the moment the doctor told us that Taylor was blind. I just started crying and I felt so helpless. Of course the first thing I asked was how this happened. He said that it may have happened during birth and that it was nothing I could have done to prevent it. After a few days, I realized that I needed to stop feeling sorry for Taylor and learn how to deal with this. I researched and found many resources, organizations, and support groups, which have helped tremendously. Even though she can only see light and outlines of figures, Taylor has shown me that she can do anything she puts her mind to. Of course there are days when she gets down or frustrated, but she always finds a way to bring herself back up. Taylor is now in 3rd grade and uses a white cane and seeing eye dog named Felix. It took a long time to master use of the cane and Felix, but she has accomplished more than I ever thought possible by her age. I have learned how important it is to have high expectations for Taylor and to let her know that we believe in her, so she will in turn believe in herself.
b. How is your child developmentally the same or different from other children at the various ages?
Physically, Taylor looks the same developmentally as any other 8 year-old. Obviously her eyes are not physically the same her peers, but that’s about all that’s different. Socially, Taylor has had a rough time. When kids, and even adults, see her with her cane and or Felix, they look down or walk the other way. It is so hard for me to see that. Taylor is well aware when this happens because she hears and senses everything. It breaks my heart because she’s an amazing child and not many children try to get to know her. Emotionally, Taylor feels loved by her family and the few friends she does have. She, however, often gets moody or has breakdowns because everything is so much more difficult for her than for her sighted peers. As she gets older, I know she feels alone in her struggles, and all I can do is tell her that she’s not alone. We struggle with this all the time. Taylor is way more mature than other children her age. She has had to go through so much in the short time she’s been alive. She has been forced to grow up fast and learn to overcome seemingly impossibly obstacles. She has learned Braille, learned how to use a cane, and has helped train her dog Felix. She has an, “I can do anything” attitude and really believes in herself. Academically, she is where she needs to be at the 3rd grade level. Taylor has had to overcome so many obstacles in school, and she has a lot of help from her special educational assistant and other resources through her IEP program. She has a wonderful assistant who helps her progress toward the goal of independence.
c. What professionals/agencies do you deal with? What services are available to you and your child?
There are many professionals and agencies that have been a great help to us. The most helpful are the National Federation of the Blind, Blind Children’s Resource Center, Individualized Education Program (IEP) at school, Guiding Eyes for the Blind (seeing eye dog program), National Organization of Parents of Blind Children, American Printing House for the Blind, Exceptional Teaching Aids, and the American Foundation for the Blind. We have also found many resources and reading tools at the Resource Center for Special Needs. Our entire family goes to the National Convention of National Federation of the Blind every year where there are over 2,500 blind people. It is an amazing experience every year. We have met so many blind people that have accomplished so much. These people really inspire Taylor to push herself to always do her best and to know that she can do anything!
d. How did you find out about the above services?
Taylor’s teacher and special educational assistant have helped us find many services. They pointed us in the direction to the Resource Center for Special Needs and they have given us everything we needed. They have provided us with Braille material, books on tape, and so much more. I have also found out so much information online, including information about the annual convention.
e. What financial burden, if any, are you experiencing?
Because Taylor’s loss of eyesight has been deemed irreversible, we are not experiencing much financial burden. No surgery or medication can help get her sight back. Although our insurance is a bit pricey, we can afford it and it covers her check ups. When she was younger, she did rehabilitation sessions weekly, but now she only goes monthly which has cut down the cost. She will eventually lose all of her sight, but rehab helps slow the process down. We have had help through programs and grants. For example, we got her white cane for free online from the National Federation of the Blind website. We got Felix for a minimal fee through Guiding Eyes for the Blind. All of our reading materials are provided through the school or through the Resource Center for Special Needs.
f. What other information do you want to share?
When I found out that Taylor was blind, I thought it was the end of the world. I can’t put my devastation and fear into words. I constantly worried about how we were going to get through this and teach her everything she needs to know to survive in this sighted world. Unexpectedly, Taylor has been the one to get us through everything. She has shown me what she is capable of. I have learned that you can’t baby your blind child. If you baby them and keep them sheltered, they will not be able to achieve independence. They are capable of so much more than we think. I have learned to let her explore things on her own and she learns so much more that way. I’ve learned that there are a lot of people who are scared of the unknown, but there are a lot of good people who offer help and support. Through her strength, Taylor has made me the mother, wife, friend, and person that I am today.
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