American Action Fund for Blind Children and Adults
Future Reflections Convention 2021 WORKSHOPS
Introduction by Tabitha Mitchell: This session consists of the confessions of NOPBC board members. Jackie Anderson, Jean Fultz, and Sarah Erb are going to share some of their experiences. These three ladies all are members of the NOPBC board, and Jackie is a teacher of the visually impaired (TVI).
Jackie Anderson: Thank you, Tabby. I am a certified teacher for blind and visually-impaired students, and more importantly, I am a mom. I'm a mom to five children, three girls and two boys. Three of them are an inheritance from my brother. After he passed away, my husband and I assumed the responsibility of caring for them. Three of the five kids have been served with IEPs. My daughter Aunya, who is seventeen, is the only one who is blind.
I have messed up quite a bit along the way. Our keynote speaker said it well: As parents we do mess up, but kids are resilient, and they bounce back.
Jean Fultz: As mentioned, I'm a member of the NOPBC board. I'm a grandparent who is parenting a blind child. My girl is ten years old (ten and a half, she'll tell you). I was the first to volunteer to serve on this panel, because I sure have made some mistakes along the way! Fortunately I'm not the only parent of this child, nor am I the only parent of a blind child. I look forward to speaking with all of you and sharing the things we learn together and some of the things I wish I had done differently. I'll tell you about some of the effects of my choices on Harley and how we've overcome them.
Sarah Erb: It's been a pleasure working with these two ladies over the past few years! I am the parent of a child who's seven. She was born blind with optic nerve hypoplasia, which means she was born with underdeveloped optic nerves. We didn't know she was blind until she was five to six months old. That's when we got an official diagnosis. I'd been a nanny for about twenty years, and my husband's attitude was, "I'm not worried, I'll just do what you say. You know how to take care of kids." But when we had our child, I realized I didn't have the tools I needed. We had great intervention services when our child was little through our state's early intervention program. They were my go-to's. They helped me with everything, and we learned as we went along. Not much of the applicable information from my history in child development and working with other families seemed applicable. Learning as we went, we made mistakes, but we learned and grew together. We've been privileged to be part of the NFB and to have access to this network of parents who've been there and done that. They've given us all sorts of ideas to try, and we learn a lot through trial and error. As the sighted parent of a child who's blind, or even as the blind parent of a child who's blind, you have to work through it as you go.
Tabitha Mitchell: I'm sorry. I didn't really introduce myself when we started. I'm a little out of kilter; I'm calling from sunny Hawaii this morning, so it's pretty early here. I am the mom of five kids, and like Sarah, I thought I had it all whipped. Then we had my youngest, who is blind, and it was kind of like starting over.
Jackie: Maybe each of us can share one confession of something that we've done while raising our kids. They say hindsight is 20/20, and we know we're among friends. Jean, would you like to go first?
Jean: You put my feet right to the fire, and that's okay. I have a bag full of stories! I think one of the most important mistakes I've made, and which I'd like to share, is that early in Harley's life I didn't know when to use my voice.
I raised my own three typical kids, and Harley has an older sister who is typical. I'm comfortable raising kids. One of the things was not knowing when to use my voice and how strongly to use my voice. I really had to get over speaking up in the moment. In particular, I had to tell people to keep their hands off Harley, and specifically to keep their hands off her cane. I had to tell people please not to take hold of her cane and not to take hold of her! Mostly that occurred when I was handing her off, to get on the bus to go to pre-K or school, or if I was handing her off to a school official or to her teacher of the visually impaired. There was a lot of my discomfort and Harley struggling to get somewhere because a sighted grownup didn't know better and was grabbing onto her body or grabbing onto her cane to pull her along. People would try to guide her by grabbing her cane hand, which of course is not helpful. Allowing too much of that was a mistake! I had to overcome my unwillingness to speak up.
Since then I've encouraged Harley to speak up for herself. After a couple of years of struggles, I learned to be comfortable speaking up and how much of a voice to use, how patient to be with people. It's a balancing act! It's hard to be patient with everyone all day long! sometimes it's exhausting!
We've spent years teaching Harley to speak up for herself, and she's done a great job. By the way, everybody, she's fine, even though some bus monitors literally picked her up and carried her up the bus steps during her first couple of years!
We're still wearing masks here in central New York. This year the bus monitor keeps trying to put Harley's mask on her. Recently Harley said, "I don't need you to do that. Just hand me the mask, and I'll put it on."
Sarah: I'm joining here today from Utah. When our child was little it was easy for me to let her be a regular kid, doing her thing, exploring her world. Now that she's older it's a little harder to do that. Sometimes I have to rein myself in and say, "Would I let a sighted child do this?" Would I let a sighted child climb a tree? Yes, I would. Would I let a sighted seven-year-old eat with their fingers? No, I wouldn't. I have to look at things that way and reframe what I'm asking.
I've got many stories I can share, but I don't have a specific one. Mostly it's about keeping myself in check. I don't always catch myself making the mistake, doing something that's not helpful until I say it or do it. Then, as soon as I hear a comment come out of my mouth, I realize it's not going to fly with this kid!
We had an experience a couple of weeks ago with our child. I told her, "You can't touch this," and she told me, "You can't tell me that! You can't say I can't touch things! That's how I see!" I said, "You're right. I taught you to say that, didn't I?" Give parameters such as "You're welcome to touch this gently," if it's something that's breakable. Learning the balance between letting them be a regular kid and also letting them touch everything because that's how they see the world has been interesting.
In the last couple of years, I went back to work, and my husband is now doing school full-time. We've switched gears from me being at home full-time to him being at home full-time. He's been going to school and managing COVID schooling at home as well. He's not always comfortable with things I would typically allow. Again, we've had to work out a balance. Sometimes that means letting our child take the lead, asking her, "What are you comfortable with?" Then we have to figure out how to meet her where she is.
When Harley was four she broke her arm when she fell out of a tree. My husband was spotting her, but she fell on the other side. It happens. It happens to kids who are sighted and kids who are blind. Sometimes kids get hurt. We're not attributing what happened to the fact that she's blind, but to her being a kid. She was exploring and having fun.
I found it hard to let someone else babysit Harley. I had parameters such as, "Don't touch her without asking first," "Don't do things for her that she can do by herself." I was turning myself into Mama Bear and never getting a break. I had to advocate for myself and get some self-care by letting other people watch her. When we had sleepovers with her cousins it was a bit more open-ended. I didn't have to set so many guidelines. The family knew what she needed and didn't need. That gave me the chance to do things on my own and not have to be a parent for a while.
Jackie: In listening to your stories, I realize I've also had to learn to use my voice. People might assume that since I grew up blind, I should have it down pat. The truth of the matter is, I didn't. That's one of the reasons I went back to obtain my master's degree in teaching blind students. I was scared to death when Aunya was born! I knew what it was to be a blind adult, but I didn't know what it is to raise a blind child. After fighting with our local school district to get services for her, I realized I needed to learn how to do these things so I could make sure she would get the skills she needed.
Aunya has had her share of bumps and bruises. At one point we had three emergency room visits in a span of ten days! The third time I said to my husband, "We're going to keep driving north, because we're not stopping at this hospital! Child welfare will be at our house!" Aunya was a rambunctious child, and within parameters we allowed her to explore—and explore she did!
Over the years I've had to recognize that Aunya is more than her disability. Now that she is seventeen, she's a bit more open with expressing feelings and thoughts. It's been important for us to recognize that she is a seventeen-year-old going about her life. She was born with cataracts, and she has glaucoma. She will tell everyone that her vision loss is not her greatest obstacle. She also has an autoimmune condition, and that's something she has to battle with every day, dealing with fatigue and pain. THAT'S what she struggles with! Mostly people see her with her cane and whatever other blindness tools she's using, and they automatically say, "Oh, you poor thing! You can't see!" Her attitude is, "That's the least of my worries!"
I tell everyone, "I'm the Braille Nazi." I fight for Braille whenever I can. But when she was in third or fourth grade, I had a discussion with Aunya's IEP team about removing Braille from her services. She has a condition called scleroderma. She was diagnosed with Raynaud's syndrome first, and that condition affects her ability to regulate the temperature in her extremities. It's very difficult for her to read Braille during extreme temperatures, in cold times as well as hot times. She struggled with Braille in elementary school, and I asked about removing Braille from her IEP.
Thank goodness her teacher disagreed with me! He said, "Let her go at her own pace. She doesn't have to be the fastest Braille reader." We made some modifications. We learned that a Braille display works better for her than paper Braille. She has learned to warm her fingers before she does any long reading during cold times. Now that she has found her voice, she leads her own IEP meetings, and she tells everyone that she uses Braille. She's found that Braille is the best way for her to edit her writing. It's the best way for her to go through a document and see her mistakes and make corrections. It works much better for her than trying to use synthesized speech. I think that was one of my biggest failings, considering taking Braille away from my own child!
Tabitha: My Emmy is now fourteen. She has LCA (Leber congenital amaurosis), and she was three when she was diagnosed. One of the most difficult things for me was that her four older siblings were in the school system ahead of her. We had relationships with the administration and the school based on those four kids. It was very interesting to sort out the nuances of balancing those established relationships yet having to be a fighter to get the things my youngest child needed. That was really hard, and it continues to be hard. We've moved school systems and now we're in a different state. We've literally started at ground zero, and we don't have to deal with those preconceived notions and established relationships. In some ways that's made it easier for us.
Jackie: One thing I tell parents and teachers is that we all know what we can see, but we don't know what we cannot see. If we treat our kids as if they are sighted, they will interact with the world as though the world is perfect, because it's perfect the way they see it. It's important for us to give them multiple ways to learn and interact with the world. For a lot of our kids, vision fluctuates throughout the day. The way they see in the morning is not the way they see in the afternoon. For our low-vision kids it becomes a struggle. When I talk about using Braille with low-vision kids, it's not just important for the future. Braille is important to help our low-vision kids access the world right now. When we make Braille relevant, our kids are more likely to see it as relevant to themselves. That's true for all of us. When we see that something is relevant, we're much more likely to participate in our learning.
Jean: It's okay to trailblaze, to start fresh and learn as you go. We're experiencing that right now at a new charter school, and we're having an amazing experience! Initially I thought it would be scary to hop out of the blind school system, but the charter has been super supportive. Still, you don't know till you get there. Learning as we go has been amazing with our current team.
Our child was in preschool about fifteen minutes from where we live. Our child had an amazing teacher who was like a third parent. We had no issues letting her go to school at three and sending her on the bus because we knew she was being well cared for. We told the teacher we didn't care if she learned all her Braille letters. We just wanted to be sure she got plenty of exposure to Braille. The teacher incorporated Braille into lots of games and activities. She was in his class for two years, and by kindergarten she knew about half of her letters. We were okay with that. We knew we could follow her learning, building the Braille onto things that interested her. We set high goals, but we didn't stress if she wasn't performing perfectly.
We have so many people working for our child's success that sometimes there's a lot of pressure for them to perform perfectly. They're not always going to do that; no child is going to do that! It's okay to give your child permission to be a kid and be like the other kids who don't have IEPs, who aren't given goals every three months. That's something Jean and Jackie and I want to stress. It's okay for our children to learn in whatever way works for them, and we can support that learning.
Tabitha: This is all very important. Thank you all for being here today.