Future Reflections        Convention Report 2012

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We All Have a Voice

by Penny Duffy

Penny Duffy with her daughter AbbyFrom the Editor: On Monday afternoon, July 2, Penny Duffy addressed the NOPBC board meeting as part of its panel on Parent Power. Penny is the founding president of the newly established New Hampshire Parents of Blind Children.

Hello. I'm Penny, and I'm honored to have the chance to speak with you today. I could never have imagined that my life journey would bring me here. Two short years ago I was an everyday mom with two kids. No one would have foreseen that anything would ever hold them back. They're both very bright, wonderful children.

So imagine my surprise when suddenly my six-year-old daughter, Abby, became blind. I was lost! What would I do? What did my daughter's future hold?

When your first-grader goes blind, you can't go to the bookstore and buy her a book. I know. I looked for hours!

I knew that blindness didn't have to change my daughter's future. I just didn't know how I could guide her to that future out there.

I was lucky. A few months later I joined the NFB and got on its Blindkid listserv. Someone recommended Carol Castellano's book, Making It Work: Educating the Blind and Visually Impaired Student in the Regular Classroom. I attended my state's NFB convention and met blind adults whom I wanted my blind child to know. Ron Gardner, who attended our state convention, told me I needed to go to a national convention. At convention last year, I heard Pam Gebert from Alaska speak about starting her state's NOPBC chapter. I thought that if Alaska, with its small, scattered population, had a parents' division, why couldn't we have one in New Hampshire?

New Hampshire needed the NOPBC. It also needed an NOPBC president. I didn't want that president to be me! I'm not one of those amazing parents I met last year. I don't have any fancy degrees, and I am painfully shy. But there's something about knowing your child needs you that can help you overcome all of those things. I have committed myself to starting a chapter in my state.

I realized it is challenging to find parents of blind children in a small state, but I started small. I started to network. I met people and got my name out. I set up a website and a Facebook page for a chapter that didn't exist. I did everything I could to spread the word that I was looking for families with blind children.

I contacted the special education department at our state's department of education. To my surprise, they were happy to hear from me. They were having as hard a time finding parents as I was. I was pleased to be asked to serve on a committee about accessible instructional materials for students in the state.

This past March, at our state NFB convention, we formed the New Hampshire Parents of Blind Children. I was elected president. It was a very proud moment! We had over twenty people at our meeting, including parents, blind adults, and even some teachers.

We have a lot of work still to do. Last month we held our first fundraiser. We worked with the New Hampshire Association for the Blind, which was holding its annual walk. The association works with nonprofits to form teams, and each team can keep half of the money it raises. Our affiliate formed a team, and half of that team was made up of people connected with the Parents of Blind Children chapter. We raised over eight thousand dollars, and our state affiliate will get half of that money back. A portion of that money comes back to the Parents of Blind Children.

We're working to create a lending library where parents can borrow great books, including Making It Work. We are planning a conference for parents and children in the early spring.

There are so many great things going on! Today I know that people want to hear my voice. Recently I had an experience that showed me I am doing the right thing. I went to an IEP meeting with a mother who is working to get Braille instruction for her child. She was having a hard time getting her voice heard. It became very clear that she knew what her child needed. She didn't need me to tell her what her child needed; she needed someone to tell her she wasn't crazy. She needed someone to tell her she was being reasonable--which she was.

We all have roles in life, and there's no role more important than being a parent. As a parent, your voice is important. Don't feel that people don't want to hear you. Use your voice at your child's IEP meeting, to help out your NOPBC chapter, or to get a chapter started in your state. We all have a voice!

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