I Found a Family

I Found a Family

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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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