Full Transcript
Jeff Thompson:
Introducing Hilda Dunford, a parent of a child who happens to be blind.
Hilda Dunford:
My advice is to just work with them, and it’s not always going to be as hard as it was in the first years. The first year was probably the hardest, having a blind child, because I was learning about all these new things, but later on I’m really grateful that I’m able to have the lessons that I’ve had through my son.
Jeff:
Sharing advice with parents of blind children and also with the teachers of the blind and visually impaired.
Hilda:
Just be understanding of these parents that this whole new world—this is all new to them, and let them be as involved as they want to be. You’re going to be the first—pretty much one of the first doors to open to this blindness for them, this blind new world that they’ve never been in.
Jeff:
As a parent to a blind child, learning about blindness from a crawl, to a walk, to a full run.
Hilda:
But once he started walking, and then he learned how to run, and he was running—it was kind of funny, but he never stopped, you know, he just took off from there, and it’s just been a whole new world, discovering, you know, learning about braille and learning about orientation and mobility, and all the things that come into play when you’re raising a child that’s blind.
Jeff:
You can follow Hilda on Instagram at OurBlindSide.
Hilda:
There’s still things that I need to work on, but I really do love the time that I get to work with my son, and learn with him, and I learn from him too.
Jeff:
From becoming her son’s best advocate, to distance learning today, it’s just life now. Please welcome Hilda Dunford.
Hilda:
It was hard at first, I’m going to be honest and say that the very first day was really hard and was not what I expected. I used to be a preschool teacher for children in a special ed preschool, and so I love teaching and I love being able to work with my son, but, I mean, third grade math is hard.
Jeff:
Welcome to Blind Abilities, I’m Jeff Thompson. In the studio today we have Hilda Dunford, and she is a parent of a blind child going to school, or doing school, during this pandemic, all of the changes that have come about, and advocating, and life itself. It’s just the new life. Welcome, Hilda.
Hilda:
Thanks, Jeff.
Jeff:
Thank you so much for taking the time out of your day—I know it’s busy, you’ve got three kids, and you’ve got your son who is blind and going through setting up homeschooling for him and making sure all of his needs are met, so thank you for taking this little time to share with our listeners what it’s like to be a parent to a blind child.
Hilda:
Yeah, it’s definitely not the same as raising a sighted child. I have two children that are sighted, and my son is blind, so having a child that is blind definitely changes all the different—I guess, what you expect from parenting, so I have learned—I think probably the first year was the hardest, coming to terms with all the different developmental milestones and the way he was going to reach them was going to be different than how I thought it was going to be.
Jeff:
Did he just surprise you?
Hilda:
He really did, he really did surprise me. I mean, he isn’t completely blind—he’s visually impaired, so he does have a little bit of vision, but with the vision that he has, he’s able to ride a bike without training wheels now that he’s eight years old and that’s something that I never thought he would be able to do. That really surprised me. He didn’t walk until he was almost two, but once he started walking, and then he learned how to run, and he was running—it was kind of funny, but he never stopped, you know, he just took off from there, and it’s just been a whole new world, discovering, you know, learning about braille and learning about orientation and mobility, and all the things that come into play when you’re raising a child that’s blind, it’s totally different from—my oldest doesn’t have any vision problems, and so I didn’t know of any of these things before Ashton.
Jeff:
And what’s it like to enter this world of raising a child with a disability? I mean you had to become his advocate, you had—it’s one way to fast track, isn’t it?
Hilda:
Yeah, I’ve had to advocate for him since he was born, because at first, actually, the doctor didn’t believe that there was anything wrong with his eyes and so that’s kind of where it all started is I wanted to know why they were bouncing. I actually had to talk to different doctors to get a referral to be able to get an MRI done to find what he had, which is septo-optic dysplasia, and that he was actually in fact legally blind. It was from then that I learned that I was going to be the first one—like, his, pretty much the most important advocate in my child’s life because me and my husband, we were going to have to speak for him and stand up for him for the needs that he had, because we are the ones that are raising him, we know him the best, and so I’ve just taken that into his schooling, at his IEP meetings. Ashton, he was actually supposed to go into only a special-ed preschool, but he was so social and did so well at a regular-ed preschool that I thought “Why can’t he do both?” And that was actually never done before, the district—my school district had never done that before, our school district. So that was an IEP battle that I had to fight for my son, to be able to have those two types of classrooms, and what that did is that when he entered kindergarten he was actually able to enter a regular kindergarten class. So that’s kind of where the advocating is just so important as a parent of a child who’s blind, you have to advocate for them because you know your child the best and you know what they need, and you have to help them so that they can grow and do the things that they want to be able to do.
Jeff:
Mm-hm. Now you started your Instagram site, and it’s called OurBlindSide, and you just posted something on the first day of school this year, where he had to go to an appointment—you witnessed your son advocating for himself.
Hilda:
Yeah, Ashton has septo-optic dysplasia, and one of the things—well, there’s a lot of things that come with it, but he needs to follow up with an endocrinologist every three months to make sure he’s growing and his hormone levels are good, and one of the things that can come up is diabetes insipidus, that is like drinking too much water and not knowing that you’re thirsty, so it’s all because of the hormones, and the needs that he has with his medication. So the doctor was explaining this to me, and Ashton was listening, and then Ashton started asking his own questions where I just kind of stepped back, and the doctor was asking me, do you think he’ll need the medication, is he going to the bathroom too much, does he need—is he drinking too much water, and Ashton just started answering all the questions on his own, and he said “Yeah, I think I really want to try this medication to help me,” and I was really impressed, because I had never—usually Ashton sits at the doctor’s appointments and listens to me and the doctor talk, but he started advocating for himself, and even though he knew he would have to have more blood work done to really find out if this is what he needs, he thought that it was something that was really going to help him, and of course I supported him and we did the extra blood work and everything, and now we’re just waiting on the results to see if this is what’s going to be best for his treatment.
Jeff:
Wow, that’s great. What a thing to witness, a stage in his life. Now when the IEPs come up he might do the same, as well.
Hilda:
Yes, yes, I do want him to—I mean, when we can do his IEP meetings in person again, right now we’re doing them over Zoom, he was actually part of the last one a little bit. He actually talked about how much he would rather not have as much Zoom time, and have a little bit more activities for me and him to do instead of having a lot of Zoom, so we actually combined Zoom meetings where two of his service—so he has OT, he has orientation and mobility, he’s got vision, and then he’s got his resource teacher, and they all want to schedule different Zoom meetings, so we’re combining them so that two of his therapists can come into one of the Zoom meetings, and that makes it so he only has three Zoom meetings a day.
Jeff:
Oh, great. So, what’s that like for you and Ashton to adjust to this new way of schooling, you know, from home, going on Zoom—I mean, as parents you want to limit how much time they’re on the internet, and now we’re pushing it, but what was that change like for you and your family?
Hilda:
It was hard at first, I’m going to be honest and say that the very first day was really hard and was not what I expected. I used to be a preschool teacher for children in a special ed preschool, and so I love teaching and I love being able to work with my son, but, I mean, third grade math is hard, and it’s even harder when you’re visually impaired, and so I have to get creative. I have a whiteboard, so I enlarge everything for Ashton on our whiteboard when we have it on the ChromeBook, and then I also have learned how to use the ChromeBook accessibility tools to magnify the screen, to make things a little bit easier for him to see them, and then on top of that I also have some manipulatives that he can use, some math base-10 blocks that he can actually count on using his fingers and touch, and that helps him a lot.
Jeff:
Oh, wow, math-based—is that something unique for children with blind and visual impairment, or is that just a typical tool for teaching?
Hilda:
The base-10 blocks I think they use for all the kids in the classroom, but I don’t think that the other kids in the classroom use them as much as Ashton does. That was something that he started using I think in first grade. It really helps him because he knows that—they’re just like squares, so there’s one that has 100 squares, and then he knows there’s one that has only 10 squares, and then one that is just the one, so that he can count it out when we’re adding and subtracting, those kind of things.
Jeff:
That’s cool.
Hilda:
The abacus is a whole other that—I’m still trying to learn how to use the abacus.
Jeff:
So you’re both learning.
Hilda:
Yes, so when he does Zoom with his vision therapist I sit with him, and he’s got—he’s actually got a braille clock so he’s working on learning how to use the braille clock, and how the time goes on there, and then he’s working on the abacus, using the abacus, and we’ve also got a smart Brailler, so the teacher is teaching him contracted braille right now, and the smart Brailler will repeat what he’s writing so she knows that he’s writing the correct contraction.
Jeff:
Oh, cool. So he has the braille keyboard, he types it out, and then it speaks it?
Hilda:
Yeah.
Jeff:
That’s awesome. That’s one thing that a lot of people who go blind later, lose some vision, and they try and learn braille, it doesn’t come as quick as someone who learns it when they’re younger. I mean, just like anybody else, like in music or something, but braille, it’s a good thing to take seriously.
Hilda:
Yeah, it’s been great for him. According to his IEP team and his vision specialist, he’s most likely going to be a braille reader. He can read large print, but it gets really—it’s hard, it’s hard for him, so we’re really pushing—we’re trying to teach him that braille is going to be a lot easier for him. He can read both, right now, but he’s not in a third grade level yet, that’s what we’re working towards, is that his reading level will be the same as his peers. How long did it take you to do braille fluently—do you feel like you enjoy reading braille?
Jeff:
You know what, my teacher had me pick a book that I had just read before I lost my eyesight—well, I knew that book. Or a story, I would suggest a story—a kids’ Doctor Seuss, stuff like that, something pretty simple that someone can almost recite because then you’ll almost flow over those words. Little games, that you can play, write a knock-knock joke, because everyone knows—knock knock, then who’s there, but it’s the punch line that’ll be new, stuff like that.
Hilda:
Yeah, those are all great tips, I really should try those with Ashton. It’s hard to get him—because he has that vision, that little bit of vision, he really—he’s so determined, when he’s determined it’s hard to get him to—he’s so determined to read what his peers are reading, and so he always goes “Why can’t—let’s just use the magnifier!” I tell him “No, but Ashton, you know, this is going to be easier for you when you’re older,” and it kind of turns into a battle, so we’re working on that, that’s probably the hardest part.
Jeff:
Can he read grade one?
Hilda:
Yeah, so grade one is what he’s reading right now, and yeah, he can do some of the simple books.
Jeff:
A game we played one time was you get a notecard, and it might say “Kitchen drawer, spoons,” something of that nature, and then in there there’ll be another card, okay, now it says, “Living room, lamp,” so then he’ll have to go to the living room lamp, there’ll be another card, and at the end of it there might be a treat, some type of thing. It’s just a little game that we played with students. So we had games like that, where they were on a scavenger hunt type of thing, anything that you can incorporate into—like when you go to hotels, but then no one’s travelling nowadays, so-
Hilda:
Actually, we did travel, we went to Florida, and it was interesting because I did have him touch the room number for the hotel. It was good for him to do that, and he actually—he really enjoys travelling, he took his cane and everything, took it to the beach, took it to everywhere we went—the airports and everything, and he did really well with that.
Jeff:
One of the biggest things that, for me, I didn’t want to use my cane, because I had enough residual a while back, but you know what? When I used my cane, when I walked into a store and I wanted something, they used to just say “Aisle three, left side.” Okay, well, that doesn’t help me too much, but if I had my cane with, they would say “Hey, just a minute,” and they’d go “It’s up this way, it’s down in aisle three, here, okay, do you want the blue or the red or the yellow,” you know? So it told other people that I might have some vision problems. It was my—I always called it my scarlet letter, but it told the bus driver, like when I asked, “What number is the bus?” and he would say “It’s on the front of the bus,” you know, of course it is, but I can’t read it, and I’d say, “I’m visually impaired,” and he’d say “Well, how would I know?” So from there on, I started using my cane, and people step aside, move a little bit, you know, that extra—or when I walk up, “Can I help you?” “Um…” and they say, “Do you want me to read you something off the menu?” It just gives the other person a clue instead of the awkwardness.
Hilda:
Yeah, yeah, his orientation and mobility specialist, she told me that, and so we try to encourage Ashton. It’s funny that you said that, because he has this shirt that says “Yes, I’m blind,” and he just happened to be wearing it the last time we were at the hospital for some blood work, and it was amazing the way people were treating him. I mean, the tech that took his blood was explaining every single step of the way, whereas-
Jeff:
Isn’t that something?
Hilda:
-other times I’ve had to say, “He’s visually impaired,” and I think he’s even had his cane, other times, so I don’t know what it was about this shirt, but it was like—I guess because it was right there, and his shirt just said “Yes, I’m blind.”
Jeff:
The cane does help. I’ve had the cane at Home Depot and they’ve tried to charge me for it thinking it was a shower curtain rod.
Hilda:
Oh, really?
Jeff:
“What’s that, a shower curtain rod? Can I scan that?” “No, it’s my cane, I’m legally blind.” “Oh, oh, okay.”
Hilda:
That’s funny. Yeah, it does help a lot. I need to get him more used to taking it everywhere, it’s just sometimes it can be hard for him. I don’t know, I just-
Jeff:
That’s great. Sounds like you’ve got a really good support team in your education field, how was that to get on board with them for his education? I mean, orientation and mobility through Zoom, that sounds interesting.
Hilda:
Oh, so that—orientation and mobility, she’s great, he’s got a great orientation and mobility specialist. She’ll let me know ahead of time when she schedules the Zoom meeting, he does it once a week, and she’ll let me know have him outside and bring the Zoom outside, or I’m just going to do the routes. So she’ll teach him about L routes, or about left and right, she’ll have a contrast, she’ll share her screen on Zoom, and she’ll teach him, oh, the airplane is going left or the airplane is going right, and where should he go if he wants to do an L route, or what should he do if he’s—I don’t have all the routes memorized that she teaches him from, but that’s how she does it, and then when we go outside, she’ll tell me “Tap left to right, and hold his shoulder, and walk towards—” she’ll just tell me towards the next house and then come back and I’ll watch him on the screen, and then she’ll tell me “Try doing this,” and so it’s mostly—it’s kind of like I’ve become the orientation and mobility specialist in a way, but I’m still learning all these things as we’re doing them. I still reach out, I mean—his IEP team is amazing, they have all been with him since he was in preschool, like especially the vision side and the orientation and mobility side. The other ones change every year, but I love that the vision ones and orientation and mobility have been the same since he was in preschool, so we have a good relationship.
Jeff:
Well, that’s great. I mean, orientation and mobility, once someone can self-determine where they want to walk to, find their way around, that’s a great skill to achieve. So on a daily basis, now, you’ve got your schedules and stuff—I’m going to go back to your Instagram, OurBlindSide, you guys do something special on Fridays as a family.
Hilda:
Yes, so on Fridays he has only two Zoom meetings, and so we get done with school pretty early, and so I like to ask my kids “Where do you guys want to go?” And, you know, we just go—we live right by a reservoir, by the mountains, and we’ve been swimming there a couple times. We’ve been to walks by the river trail, and we want to go to pumpkin patches in the fall, and it’s just a great way to just get out of the house and celebrate, look at all these things we did throughout the week, like, you did so good in your math, and you’re doing great at rounding, and my oldest is in 7th grade and I tell her “You’re doing great with this,” and then my youngest is in preschool, and we just celebrate all of those little victories that we’ve worked together all week on, and we just enjoy nature and just get out, and it’s just helped us so much.
Jeff:
Now, even during the weekdays of classes and schools, especially during the beginning of the school year where you’re just starting to feel out all the needs and everything coming together, you’ve even reflected—once again, back to your Instagram—you’ve even reflected that some good happens and you’ve got to remember those, and you’ve gotten opportunities to be with your kids like you hadn’t been before, in a way. It’s different, but you’re still interacting.
Hilda:
Yeah, so what I’ve noticed is that we really do have a lot more time together. It’s funny because I always thought yeah, I get a lot of quality time with my kids after school, like when they were in school last year, and you know, we do their work and everything, but I didn’t realize how much more time we can have when I don’t have to go drive to one school and pick one up and drive to another and pick another one up and hurry, and now we don’t have the afterschool things going on, and so just us, it’s just us when we’re done with school, and even while we’re in school we’re spending time together and we’re learning from each other, and then when we’re done we’re still spending time together, and it’s just time that I didn’t have before that I’m really grateful to have with them, because we were so busy before.
Jeff:
What advice would you give to another parent who has a child with visual impairments?
Hilda:
I would tell them that it’s a really hard journey at the beginning, but it’s also one of the most amazing and incredible ways to see the world through their child’s eyes in the way that they can’t—they’re not seeing it with vision, but they’re seeing it for the things that are the most important. I mean, Ashton has taught me those things, it’s just—you know, it’s going to be hard, and yes, you’re going to meet a lot of therapists, and you’re going to learn a whole new bunch of skills that you never thought, and read different books and things, and a whole new alphabet with braille but your child is going to be one of the most amazing people that you’ll ever meet, and you won’t be the only one that—they will inspire others too. And so my advice is to just work with them, and it’s not always going to be—I guess it’s not always going to be as hard as it was in the first years. The first year was probably the hardest, having a blind child, because I was learning about all these new things, but later on I’m really grateful that I’m able to have the lessons that I’ve had through my son. And so I wouldn’t change that, I mean, I feel like other parents miss out, because they don’t get to have those lessons, they don’t get to see the way that my son does, and at the end of the day they don’t have a little boy with a white cane who is holding their hand, telling them “Thanks, Mom, for doing that,” or “Did you—” just reminding them those things. It’s been amazing, and I’m so glad I get to be his mom.
Jeff:
You know, my kids are a little bit older, I’m watching them spread their wings. Sometimes you don’t want them to leave the nest and all that stuff, but, you know, with you having two other children, and they’re growing, and seeing them change, it must be—with all the advocacy that you have to do and we talked about this a little bit earlier, but seeing him self-determine or advocate or ask questions, it must have been heavy hearted to just see that happening and to realize that it’s going to continue from this point, so, yeah, the first years were harder, but now it might be harder to let go too, a little bit.
Hilda:
Yeah, it is hard to let go, it is hard to—I mean, I want him to be independent, I want him to do all the things he wants to do. You know, he has so many dreams—he wants to be a writer, he wants to make videos, he loves recording things on this little camera that he has, he loves taking pictures, I mean, I want to support him in all the things he wants to do, but at the same time, yeah, I do think of that day when my son is going to go to college, and it’s hard, it’s really hard, because then I won’t be the one there doing those things for him, but I will also be the one who is the proudest to see him doing those things.
Jeff:
What advice would you have for a TVI, a teacher for the visually impaired, as a parent of a blind child?
Hilda:
Be as understanding as you can be, and I mean, I’m really grateful for Ashton’s TVI, she’s amazing, and we love her, and she finds the tools that we need and brings them to our home, and drops them off, and talks to me over the phone, she’s great. But be—just be understanding of these parents, that this whole new world—this is all new to them, and let them be as involved as they want to be. That’s something that I’ve always been grateful for, is that his therapists will always explain to me as much as I want to learn from it, you know, they were the ones who taught me braille, they were the ones who showed me the Perkins Brailler for the first time, they were the ones that told me everything that I’ve used to help my son, and so you’re going to be the first—pretty much one of the first doors to open to this blindness for them, this blind new world that they’ve never been in, and so help them as much as you can and work together as a team with the parents, and that’s the way that the student will succeed.
Jeff:
That’s great advice, and I’m sure people will be following your Instagram, OurBlindSide. We’ll find out more of the journey, more advice, and thank you for doing that for everybody.
Hilda:
You’re welcome.
Jeff:
How can people follow you?
Hilda:
I am on Instagram, it’s @ourblindside, that is my Instagram, and I just share on there. I don’t have a blog—I wanted to start a blog, but right now I have so much on my plate with doing school at home with my son and my kids, but that’s what I share on there, everything about Ashton’s journey, and what it’s like being his mom, and our family, that’s on my Instagram.
Jeff:
It’s kind of neat, it’s a package deal, it’s not just about Ashton, it’s the other kids, the interaction that you all have, so you get a big picture of kind of this integrated family of someone with visual impairment, and someone that doesn’t, and it’s—you said something, “It’s just life now,” and I thought about that, it’s just life now, I mean, some people used to use “The new normal,” I like your comment, it’s just life now.
Hilda:
Yeah, it’s different from what it was before, but it’s just the way life is now, and I think we’re all doing our best to adjust to it.
Jeff:
Mm-hm. I think the way you write on your Instagram is really good, I think that’s a blog in itself. I did not know I would get sucked into it so far, I just started going into some of the pictures and you have some good writings on there, the little journeys, the little adventures, the trials of starting school from home, like when you said if someone told me I’d be teaching from home a year from now, you’d laugh.
Hilda:
Yeah, I think I really would have laughed, because I—I mean, his school team, like I said, his IEP team is amazing, and last year when I would drop him off at school I always thanked them for all the things that they helped Ashton with, you know, and I always thought to myself, there’s no way I could do it all myself, but I mean, one day at a time we’re finding a way to make it work, and I mean, there’s still things that I need to work on, but I really do love the time that I get to work with my son and learn with him, and I learn from him too.
Jeff:
Well, Hilda, you’re doing a great job, and thank you for sharing so much on your Instagram, that’s where I got all my notes for this podcast, it was good, and I’m glad I got sucked in, because it’s a—you’re a good writer, and I’m looking for the blog someday, and right now the Instagram, OurBlindSide, does pretty well. So, thank you Hilda, for coming on, thank you for sharing the story.
Hilda:
You’re welcome, thanks for having me.
Jeff:
Be sure to contact your state services for the blind, your Voc Rehab, and find out what they can do for you. Live, work, read, succeed. A big shout out to Chee Chau for his beautiful music, you can follow Chee Chau on Twitter @lcheechau.
[Music] [Transition noise] -When we share
-What we see
-Through each other’s eyes…
[Multiple voices overlapping, in unison, to form a single sentence]
…We can then begin to bridge the gap between the limited expectations, and the realities of Blind Abilities.
Jeff:
For more podcasts with the blindness perspective, check us out on the web at www.blindabilities.com, on Twitter @BlindAbilities. Download our app from the app store Blind Abilities, that’s two words, or send us an email at info@blindabilities.com. Thanks for listening.
Contact Your State Services
If you reside in Minnesota, and you would like to know more about Transition Services from State Services contact Transition Coordinator Sheila Koenig by email or contact her via phone at 651-539-2361.
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