Future Reflections        Convention Report 2012

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The Tools We Need

by Chantal Alberhasky

Chantal Alberhasky’s son DrakeFrom the Editor: On the Parent Power panel at the NOPBC board meeting, Chantal Alberhasky spoke about how she helped to establish the new Parents of Blind Children chapter in Missouri.

Two months ago, at our NFB state convention in Missouri, we formed a Parents of Blind Children chapter, of which I agreed to be president. I'm the mother of five children. Our youngest son, Drake, has albinism, and due to the condition, he is blind.

Drake was adopted at twenty months. While we were waiting to travel to get him, I looked for information about albinism. When I went to the albinism community, I was told, "Your child does not need Braille. Your child will never need a cane. He will get through life using large print and audiobooks." But the more research I did, the more I felt that something wasn't right.

I decided that Drake was going to learn Braille, that Braille was important. When we enrolled Drake in early childhood education, I was told, "Your child has albinism, and kids with albinism do not learn Braille." I said, "This one does." They did teach him Braille. Then the school district told me, "Your child needs a cane." I said, "I don't think he does." They said, "Yes, he does," and I said, "Fine." At three he had a cane in his hand, and he started to learn Braille. It was fortunate that I figured out he needed to learn Braille, and fortunate that the district figured out he needed a cane!

I tried to stay active in the albinism community, but I really didn't feel like I fit in. I was very pro Braille, and I was beginning to understand how important a cane was for my child as well. By training I am a special education attorney. I went to the state convention of an albinism organization, where I had been asked to do a presentation on the IEP. But I was warned, "Do not talk about Braille. If you talk about Braille, you will get in trouble." Well, in my examples about how I have had to advocate, I talked about getting Braille for my son.

I met a number of other parents in the albinism community, including Holly Miller, who have become active in the NFB. Several of us attended the NFB convention last year. I thought, "Oh my God! These are my people!" Not only did people at the NFB convention believe in Braille and think the cane is necessary, they advocated for those tools. They fight for them. They teach parents, and they help children. Here was everything I believe in.

After convention I was invited to attend the Parent Leadership Program. To be honest, I went thinking, please don't ask me to do anything! I don't have time. I didn't even take notes during the portion of the conference about what to do when you create your new parents' chapter. I refused to take notes, because I was not going to do any of it! [Laughter]

Then I met with Gary and Debbie Wunder. Gary is our NFB state president. Debbie said to me, "I know you're really busy, but would you consider being president of the new parents' chapter in Missouri?" And I heard the words come out of my mouth, "Yes, Debbie! I would love to do that!" Then I had to email Carol Castellano and say, "I lost my notes from the Parent Leadership conference." Carol sent me hers.

I'm excited about working with the NFB to help parents. I really look forward to the things we're planning to do. We're going to have an IEP workshop in September, since that's what I do for a living. It's very important for parents to have the tools they need to fight for their children.

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