American Action Fund for Blind Children and Adults
Future Reflections
       Convention 2021      NOPBC BOARD MEETING

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Parent Power

A Panel Moderated by Carol Castellano

Introduction by Carlton Walker: No matter what obstacles we face, the trip is always better when we travel with friends. Now we will learn how parent leaders in Arizona and Virginia are tackling obstacles and planning for the future. Carol Castellano, who serves as secretary of the NOPBC board, will facilitate the discussion with Ashleigh Moon, president of the Arizona Parents of Blind Children; Beth Sellers, president of the Virginia Parents of Blind Children; and Donna, a Virginia parent.

Carol Castellano:I always love the Parent Power panel! We started it many years ago to help give inspiration and share ideas about what we're doing in our states. Beth, would you start us out, please? Tell us about what's happening in Virginia.

Beth Sellers: I am president of our parents' division. I am the parent of three children, and two of them are blind. I have a fourteen-year-old blind daughter and an almost twelve-year-old blind daughter as well.

Here in Virginia we are working very hard to provide access for all of our kids. I'm sure we're all fighting similar battles across all of the states! We're trying to get our kids more access to Braille. We're very fortunate that my oldest daughter has had Jordana Engelbretsen, this year's Distinguished Educator of Blind Children, as one of her Braille teachers during the pandemic. That has been a huge blessing. In one year she made leaps and bounds in her progress, and we saw what an awesome teacher can do.

Our goal is to provide everybody with equal access to Braille, to assistive technology, and to the Expanded Core Curriculum. We want it not to be a fight, but to be a given. When we go to an IEP meeting, we shouldn't have to argue that a child should have equal access. It should be an absolute given! We shouldn't have to rally the forces to get things done! We shouldn't have to fight for our kids to get more than thirty minutes a week with a TVI, while sighted children get literacy instruction daily.

Carol: Thank you, Beth. What sorts of activities do you hope to have, now and in the future?

Beth: Even though our parents' chapter is small, our families have children of a wide range of ages. We have babies, and we have kids who are out of school. Some of the older kids have multiple disabilities, so their parents relate to us even though the kids aren't in school at this point.

We try to incorporate all ages into our trainings. We're trying to do trainings on IEP development, and we're trying to do trainings on COVID recoupment services. We're trying to bring people into the NFB family as a whole and help families participate in all NFB offerings. We're trying to have social get-togethers to help families network.

Virginia is a large and diverse state. A lot of families, like mine, find that we are the only family with blind children in a geographic region. My kids don't see other blind people unless we go to an NFB convention. To network virtually or to drive an hour to get together with another family of a blind child is really important to us. Our focus right now is on school services and social gatherings.

Carol: A lot of people don't realize that blindness in children is the lowest incidence disability except for deafblindness. There really are not a lot of us around! We might feel like there are because we know each other, but in reality, in our town or our school district we're usually the only one. Thanks for the work that you're doing!

Donna, we'd like to hear your thoughts about what's going on in your state.

Donna: First of all, I want to say thank you for the chance to participate in our NOPBC Third Thursday Webinars. They're a lot of fun! We meet on the third Thursday of each month at 7:00 p.m. eastern. Last month we had a great session with Barbara Cheadle, Carol Castellano, and Briley O'Connor, discussing how to choose children's books with positive blind characters and how to incorporate them into the classroom and at home. We hope to have that recording out on our website soon. You can find out about our seminars on our NOPBC webpage.

I've switched my personal efforts from the local school level to the district level. It's been really enlightening to learn how things at the district level really work. Our district, in Fairfax County, has a special education PTA called SEPTA. I recognize a few names from Fairfax County here among the attendees. If you're in Fairfax County I'd like to encourage you to join SEPTA. We need your voice at the table! I've learned a lot through working with them.

A lot of important early literacy initiatives are taking place around the country right now, and it's very important for parents of blind and low-vision students to take their seats at PTA tables. We need to speak up about accessibility at the design level as these new early literacy programs are adopted. If they're accessible, they can benefit our kids greatly. Whether you do public school, private school, or home school, whatever type of schooling you do, you can join your district's PTA. You can attend meetings, serve on committees, and advocate with the district administration. This can be a very effective way to make the powers that be aware of what's needed. Sometimes there are people who know what's happening and don't want to admit it. There are many, many more who really don't know. Because blindness is a low-incidence disability, as Carol said, it's likely that people just don't know how to help.

Finally, we're making a fresh push for the teaching of Nemeth Braille Code in Virginia. Our amazing Carlton Walker has authored a series of wonderful resources on this topic. Forty-three of the fifty states teach Nemeth Braille Code for mathematics. Virginia is one of only seven states that adopted UEB (United English Braille) for math.

Nemeth Code is the only system that gives our kids robust access to higher-level math and access to the mathematical portions of achievement tests such as the PSAT, SAT, and AP exams. Some kids in Virginia are being told not to take the AP exam that they've worked so hard to prepare for, simply because they've not been provided with the Nemeth instruction that would let them access the test. We have military kids in Virginia who learned Nemeth Code in other states. In Virginia they have to start over and learn the UEB Math Code.

My family is preparing to move to another state, where they teach Nemeth to blind students. We asked for Nemeth instruction in Virginia to help us prepare. We were told no, even after we made the district aware of the responsibilities defined in the Military Interstate Compact.

We definitely need the voices of parents in Virginia! And if you're in Delaware, Maine, Massachusetts, North Carolina, Rhode Island, or Utah, please consider advocating for the teaching of Nemeth Code in place of UEB in your state! Thank you!

Carol: Thank you very much, Donna! It sounds like between you two and the other parents in your chapter, Virginia's going to be in good shape. Keep up the good work!

The third person on our panel is Ashleigh Moon of Arizona. What's happening in Arizona, and what are your hopes and dreams?

Ashleigh Moon: Thank you so much for having me! I feel like we have a long way to go when I hear about all the things you're doing in Virginia! Arizona's chapter has had a lot of fluctuations over the past few years.

I'm the parent of a two-and-a-half-year-old daughter, and last year I ran for president of our Arizona parents' chapter. I decided to run for president, and I was happy to be elected to that position. This past year we've been trying to build up the chapter again. We've been working virtually and trying to build our membership. We've done virtual events with some success. We're trying to build more of a network.

Our long-term goals are the same as everyone's, to benefit our children through education and planning for their futures. Right now our short-term goal is to build a network for families in Arizona. We have a lot of families who don't know other parents of blind children. Some are working with agencies or groups that have philosophies very different from ours in the Federation. We're trying to pull those families in and show them our Federation philosophy at work. We want to show them the potential that their children really have.

We've held several virtual events. We had an open house for people to get to know each other. We held an event where we read an article from the Braille Monitor and had a discussion about it. Recently we ran a Braille workshop for parents who are interested in learning Braille. A couple of parents in that workshop are interested in starting a study group so they can learn Braille together. That's what we've been up to in Arizona.

Carol: I think that among the three of you, you hit on the hopes, the dreams, and the challenges that we face, especially in this virtual age. But you also point out that the virtual age gives us a way to bridge the geographic distance between families. Thank you for speaking to us today! You are all part of our Parent Leadership Program. I invite any parent who is with us today to get more involved with the National Organization of Parents of Blind Children and help with the important work we do. Thank you!

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