'American Action Fund for Blind Children and Adults
Future Reflections
       Convention 2019      NOPBC BOARD MEETING

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Support from Parent Leaders

by Sarah Erb, Emily Wagner Gindlesberger, and Carla Keirns

From the Editor: At the NFB National Convention families from all over the country share ideas and provide mutual support. In this presentation at the NOPBC board meeting, three parent leaders discussed the work they are doing to support parents in their home states during the other fifty-one weeks of the year.

Carla Keirns: Hello! I am Carla Keirns from Kansas City, Missouri. First I want to recognize the longtime leadership of Rosina Foster and Lisa Coccavizo, who have provided wonderful leadership over the years.

I have noticed that there is a natural life cycle evolution in parent advocacy. A lot of us show up when our kids are young or when they're in crisis. We're asking, "What am I going to do? How are we going to make this work?" Then when things settle down, we go back to our everyday lives again.

My little boy is five going on six. We initially got involved with the Federation when he was newly diagnosed as a newborn. Then we came back to the Federation in a more intensive way when I was anticipating kindergarten. I was saying to myself, "This is not going to go well," and I felt I needed help.

In Missouri we're looking at how we can reach out to parents, not only in moments of crisis, but throughout their children's lives. What can we do to help our preschool kids who may not be in a formal educational environment? How do we reach out to families and get them involved in BELL® Academy? This is the eighth year Missouri has had a BELL Academy in St. Louis. Last year we held a Kansas City BELL Academy on the Missouri side, and we planned to hold a Kansas City BELL on the Kansas side this summer. (Kansas City is a divided city, divided by a river and a state line.) Unfortunately, we didn't have enough students from Kansas enrolled, so we couldn't hold the program. We didn't have enough students for a Kansas City BELL in Missouri, either! My son had to go all the way to St. Louis. It was an awesome program, but it would have been nice to have a BELL closer to home. This experience tells me that we're still not reaching our potential audience. I think there are a lot of reasons why.

Missouri has several major metro areas. Kansas City and St. Louis are the biggest. Columbia and the capital, Jefferson City, are metro areas in the middle of the state. Joplin is a pretty big city in the south. Then we have a lot of tourist areas and agricultural areas. How can we reach families in all of our cities, and how can we make sure that folks in our rural communities are not isolated?

We have systematically been looking for ways to find our blind children. Our branch of the National Library Service for the Print Disabled has a list of the children they serve, and they are willing to send out material for us. Also we can send information to people who have requested a long white cane from the national office. We are trying to send information through the schools that serve blind children in St. Louis and Kansas City. But reaching families in our rural communities continues to be a challenge.

The folks who ran our BELL Academies last year and people active in our NFB affiliate have worked hard to encourage and develop parent leadership. They sent me to Washington, DC, this past spring for the Parent Leadership Program. They got together a series of conference calls to plan a focus group for parents at our state convention. The idea was to identify leaders and to determine the kinds of activities that will be most useful.

On one hand we work to find blind children, and on the other hand we try to figure out what we are going to do for the children we know already. We decided to hold some youth activities at the state level. It turned out that we had identified a number of teenage girls. We came up with some activities for the girls, but our state board wanted to know what we would do for the teenage boys. We said, "First we've got to find them, and then we'll create activities for them, too."

Right now we're in leadership transition because of the life cycle of individuals' involvement. We're having focus groups to determine the needs of families that aren't being met through other programs. One thing we need to work on is IEP advocacy for students. That's a big challenge, and so is transition to adulthood. We look forward to hearing what people are doing in other states.

Emily Wagner Gindlesberger: Pennsylvania is a very long state. We have two major population areas, Philadelphia and Pittsburgh. We have parents who want to be involved, and parents who come to us in times of crisis. It's not always easy to understand what they need most.

Sometimes we parents blame ourselves for our children's blindness. There were moments when I wondered, "Did I stand in front of the microwave a little too long before my daughter was born?" My daughter Angelina is in Youth Track right now; she's fourteen. She's totally blind. The doctors told me there are only twenty-three known cases in the whole world of children born with her eye condition!

I remember one night asking myself some tough questions. Was I struggling because I didn't want my child to be blind, or because I didn't know how to be the parent of a blind child? We have to teach our children the blindness skills they need, but otherwise there's really nothing different for us as parents. Our kids are reading Braille, but they're still reading.

At one point or another, all of us are scared. By being here, we know that we're ready to move forward. If you wait for a couple of years and come back, we're still going to be here for you.

The next step I have to face is dealing with my own vision impairment. I know that whenever I'm ready to walk through that door, whether it's at this convention or the next one, I will be accepted. I will not be judged. I will be helped, because all of us here are a family. We want to help you. Please come to us. That's what we're here for! Let us know what you need.

Sarah Erb: Hi, I'm Sarah Erb,and we are revitalizing the parents of blind children group in Utah. We're fortunate to have some great resources in Marla Palmer and Pat Renfranz. I've been very fortunate as my daughter Maeve is coming into her own.

My sister-in-law has a degree in special education. One day she asked me, "When are you going to tell her she's blind?" I said, "I'm not going to. I don't have the qualifications to tell her what that means. It means something different to each person. She's going to have to tell me."

Then Maeve went to her first BELL Academy. She came home and said, "Mom, I'm blind. That means I need to use my hands to see what's happening around me." I said, "Awesome!"

My husband, Steve, and I feel very fortunate to have so many wonderful blind mentors and supportive family members we can call on. Blind mentors can tell us about their experiences at different stages in their lives. It means so much to see people who are authentically reading Braille and using a cane every day. We've had great teachers in the school system, but it's important to have people in our lives who use the blindness skills our daughter is learning.

We just held our BELL Academy with fifteen children from fourteen families. One day we held a little meet-and-greet, and twelve of the parents came. We got them together an hour before it was time for them to pick up their kids. We talked about where they are now and where they want to be. We let them know we're here to help them get there.

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