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I Found a Family in the NFB
by Carol Akers
From the Editor: This article was originally published under the title, "Why am I a Federationist" in Advocacy for Action, the newsletter of the Ohio NFB Parents Division. The author, Carol Akers, is an active member of this division and the parent of a severely impaired blind son, Dustin, who is now 13 years old. Dustin, Carol tells me, functions mentally at about the age of a 4 or 5 year old, but a little higher than that socially. He has Cerebral Palsy, wears leg braces, has some behavioral issues, and takes a lot of medication for seizures. Dustin used a white cane for a time, but he hasn't recently because of increased problems with balance. Carol is considering if he might be able to use it again, possibly in combination with a support cane. Dustin has a wonderful memory and enjoys memorizing songs and nursery rhymes. He does not read or write, but Carol has had him assessed and at least one Braille teacher with experience in teaching low functioning children believes he has the capacity to learn to recognize some Braille letters. Because the ability to label items would increase Dustin's daily living independence, Carol hopes to get this academic skill added to his IEP.
If you read the preceding article by Gary Wunder it's easy to see how Carol could have been one of the parents at that seminar. So, in one sense, Carol through the following article picks up the story where Gary left off. Here is Carol's account of how she found a family in the NFB:
In 1991 I remember reading a magazine entitled Future Reflections, which I had begun receiving after attending a seminar the year before. I found the articles encouraging and full of promise. My son, Dustin, had not been born blind like many of the children in the articles, but instead had become blind through a traumatic injury at the age of four and a half months. My son's problem was the result of Shaken Baby Syndrome, a situation which in many cases is fatal. His father, entrusted with his care, had violated that trust by injuring his only child. After spending two months in the hospital and surviving when the odds were slim, Dustin had many problems. The blindness apparently was not a problem anyone felt important enough to share with me, the sole caregiver. I was told about the possibility of some degree of retardation due to severe brain injury, about the seizures which would require several medications to control, and about the possibility of other problems that were yet unknown, but no one told me that he couldn't see. Learning that my beautiful blue-eyed baby would never again see me was very painful. At that time I didn't know anyone who was blind.
The first step I remember taking was to talk to the superintendent of our local school system in our small town of 10,000. The comment that sticks in my mind is 'We will never have a program for him, not now, not in the future. It would be best for you to visit the State School for the Blind in Columbus and talk to them.' My child was only four months old and I was having to think of sending him away to school when I should be enrolling him on the list for the local preschool my daughter had attended!
The area representative for the Bureau of Services for the Visually Impaired (BSVI) had driven over an hour to talk to me about Dustin's future. He had made a point to tell me which organization I should avoid. The National Federation of the Blind, he said, is a very radical and militant group, you don't want to get mixed up with them. Instead, he referred me to calmer groups and said if I had to talk to someone, they would be better. He did, however, offer to send my then eighteen-month-old son and me to a camp three and a half-hours away that he thought I might enjoy. He never mentioned that there would be other parents of blind children attending and that it would be a great place to network or receive much needed moral support. I was on my own to search for support and education. The day I received a brochure regarding a seminar dealing with blind children, I was in heaven. It was only an hour away, and I could bring my son with me. I couldn't wait. I remember meeting a couple of other blind children of various ages and their parents. Finally I met someone with whom I shared a common thread.
After losing contact with those parents, I read an article about the NFB Convention and the Parents Seminar in New Orleans. I wrote to the editor of Future Reflections, Barbara Cheadle, for information. I was a disparate sinking parent wanting a lifeline. I was amazed when someone from the NFB of Ohio contacted me and asked if I would be interested in attending the convention in New Orleans. I was unsure how to respond since no one had ever offered me such an opportunity. I must say this was a real surprise to me since my son was only the second blind person I had ever met until I got involved in the NFB. But I went. I finally knew how it felt to be a minority. Not only was I one of the lesser numbers of sighted people on that trip, but I only vaguely knew two of these people and the rest were strangers.
These strangers, however, quickly became family and close friends over the last few years. Through this family I have learned how to deal with the school system and learned about what Dustin is entitled to. Militant? Radical? I think not! This is what the NFB is to me: supportive like a family, firm in their beliefs, and the true experts on blindness. The mounds of literature I have brought home each year since I went to that first NFB Convention has been shared with teachers, therapists, and caregivers. I was afraid, at first, to become involved with the militant group, but now I wouldn't want it any other way.
If you sit back and watch the world go and never take risks, you will get nowhere. You will never benefit from experiences and challenges that otherwise would be in your path. I am thankful that I was brave enough to accept the offer to attend that first convention.
My son will never be just blind. He will always have other problems which prevent him from being normal, but that does not mean what I have learned from those conventions and meetings will not benefit Dustin. There is always something more to share with another parent or something to learn from them.
The NFB is more than an organization. The NFB is people you can call and not feel any intimidation by as you as you might feel by the educational system. I know my connection with the NFB has been beneficial to Dustin and me, and I expect it will continue to be so.
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