Blindness | Braille | Unlimited Potential Lesson Learned
“A very important thing every parent of a child who is blind needs to learn is braille. I started learning braille when Ashton was just a few months old.”~Hilda Dunford
Feeling With The Heart Doesn’t Require Sight
“Sometimes when I need a miracle, I look into my son’s eyes and realize I’ve already created one.”
When my son, Ashton, was born and I was told he was blind I was heartbroken. Just thinking about the challenges ahead of him and all the things he would miss without sight was overwhelming.
I remember this cereal commercial where the mom shows her baby how to pick up and eat the cereal. Then she points for the baby to do likewise and of course, the baby does. I used to cry every single time I saw this commercial. My six-month-old son couldn’t sit up and he definitely couldn’t look at me to learn how to feed himself.
Looking back now I realize that I was wrong. You see, I thought he wouldn’t be able to do all the things I imagined and hoped he’d achieve. However, in the last seven years, I’ve learned the exact opposite of what I originally thought.
I am so thankful for Ash, he is one of the most amazing gifts and blessings. Navigating his world with him through touch and seeing it in a completely different way, has taught me so much. Ashton has taught us about the blind side of life. The side you don’t need sight to see but only your heart to feel.
I’d like to share more about Ashton’s journey, his accomplishments that mean everything, and the hard parts too. As a mom, I want to change the way others see having a child who is blind.
Receiving The Results
Let me start from the beginning. The day of Ashton’s diagnosis an ophthalmologist who had done an MRI of his brain called me with the results. I knew the news wasn’t good. She asked me to sit down. then she confirmed I wasn’t home alone. The reason being I’d have someone to talk with after she and I finished our phone conversation. She explained to me “Ashton is blind since his optic nerve did not develop the way it should have. It is called Optic Nerve Hypoplasia.” While she continued to into more detail about parts of the brain and nerves I tuned out and cried.
I remember sitting in a rocking chair holding Ashton and thinking of all the things he wouldn’t be able to do. It felt like my entire world was falling apart because I wasn’t able to give my child sight. In retrospect, it was one of the hardest days of my life.
I wish I could go back now and tell myself about all the amazing things Ashton would do. Things like:
- he would learn to walk later than other kids yet he’d never give up
- just like other kids he would learn to run, swim, and play
- he would learn how to read braille
- while not liking sports somehow skiing would become his favorite one
- he would learn to sing his heart out and make everyone smile in the room
- winning awards for his beautiful writing
I wish I could go back and encourage that young mom holding her visually impaired 4-month-old baby. But since I can’t I will share what I’ve learned with you.
The Medical Journey
There’ve been a significant amount of medical needs in Ashton’s journey. With his diagnosis of Optic Nerve Hypoplasia also came the diagnosis of Septo Optic Dysplasia (SOD). His optic nerve was underdeveloped during the 14th week of pregnancy, (this happens once in 10,000 births).
The diagnosis also affected Ashton’s pituitary gland, affecting his growth and hormone levels in his brain. In order for him to grow, we had to start giving him growth hormone shots at 5 months old. This was very hard; I still remember holding my baby and crying because he did not like getting the shots. He also has to take thyroid and hydrocortisone hormones in a pill form. However, administering pills was easier than shots.
In the past, when Ashton has gotten sick we’ve experienced some scary medical situations. The last time was the worst one because he had a fifteen minute seizure. We were life-flighted to Primary Children’s Hospital in Salt Lake City because of the gravity of the situation. For this reason, we have to be very careful when he gets sick because his immune system is not as strong as other children. His seizure came from having extremely low sodium after acquiring a stomach bug and vomiting all day. Now we keep anti-seizure medication on hand, in case we need it.
Monitoring Ashton’s health requires us to adjust his hormone dosage when he’s sick. This helps him regulate the stress his body is feeling and fight the sickness. Thankfully, we haven’t had any other seizure episodes and hope we don’t have to go through that again.
On top of his regular pediatric visits, Ashton has a great endocrinologist who he sees every three months and an ophthalmologist seen every year. We love all of his doctors and they have all been very sweet with our son in the 7 years they have been taking care of him.
Early Intervention Services
Let me tell you more about Ashton. He is the most determined little boy I’ve ever met. The best listener and the most curious and creative problem-solver. Ashton has received services from our local school of the blind since he was born. He was also able to get early intervention services from our local early intervention program. Both of these programs would send a home visitor who worked individually with my son.
I am so thankful for the help of the vision therapist from the school of the blind and the developmental specialist from early intervention. They helped me learn tools to help my son thrive in his development. We had physical therapists from early intervention who also helped my son reach milestones like crawling and walking. It’s amazing all the things I was able to learn from them. I don’t think I would’ve been able to teach my son all the things he learned in the first three years without all of these providers. Every parent of a child who is blind needs the help of these amazing services to help their child succeed.
Mainstream Learning With Adaptations
Now that Ashton is in first grade he has a vision tech with him 4 hours of the day. He is part of a regular education first-grade class and his vision tech transcribes everything in braille for him. In addition, he has an occupational therapist (OT), a physical therapist (PT), and an orientation and mobility specialist (O&M). All of these specialists work with him on different days of the week and pull him out of his class:
- fine motors skills with his occupational therapist
- gross motor skills with his physical therapist
- learn how to use his cane to get around with his orientation and mobility specialist
I am so glad these professionals are able to work with my son and help him reach all of his educational goals.
The Importance Of Braille Literacy
A very important thing every parent of a child who is blind needs to learn is braille. I started learning braille when Ashton was just a few months old. I asked his TVI (Teacher of the Visually Impaired) from the parent-infant program at the school of the blind to teach me braille. She started leaving me tiny homework assignments like brailling the entire alphabet or recognizing the patterns the dots follow for certain letters.
The TVI also told me to try and write a letter to my son in braille. Due to the complexity of the task, I did some online research to find other braille courses I could take to help me. I found The Hadley Institute for the Blind had an online braille course for parents of children who are blind. I immediately signed up and started taking the course. This curriculum helped me the most to learn braille.
I started making braille labels for him around the house. One for his bookshelf that read “books” and one for his desk that read “desk.” I labeled his entire room because I wanted my son to start feeling braille. We also had many braille books, every Christmas and birthdays I would braille a children’s book for him. At first, it would take all day to braille one tiny children’s book but then I got much faster at brailling them.
By brailling them, I mean I was able to stick clear braille labels below the print on the books. Ashton achieved a great foundation of literacy because of his love for books. He continues to love reading and writing short stories and is able to recognize the braille alphabet.
Ashton The Writer
As Ashton has gotten older, I also learned a lot about blind people and how independent and incredible they are. I’ve met amazing blind adults at conferences for parents of children who are blind. I realized the only two things my son wouldn’t be able to do are reading small print, and driving a car. Everything else is possible and as he’s gotten older he’s shown me there’s so much more he can achieve.
Ashton has won awards for his writing in braille. He wants to be a writer and writes straight from his heart. He wrote a poem for his dad and won a State Award in a PTA Reflections contest. It was the sweetest poem about how his dad is his hero.
My Dad is My Hero
By Ashton Dunford
When I was born my dad helped me, he helped me to see.
He gave me my cane and I love him.
He holds my hands to teach me things, that is why he is my hero.
Ashton The Singer
Ashton also has a beautiful voice and loves to sing. He has sung in front of hundreds of people to support local nonprofit foundations in their fundraiser events. Bold and unafraid he stands up in front of a big crowd and sings his heart out. His favorite song to perform is “A Million Dreams” from The Greatest Showman. However, he has also sung the National Anthem at other events. He is incredible to watch on stage, always brings me to tears to see him up there with his cane and listen to him sing.
I am so proud of this little boy! Ashton has come such a long way and there’s really no limits to the things he will do in the future. I hope every parent of a child who is blind can understand that vision or the lack of it, will never stop their child from accomplishing big things. Lacking sight has never stopped anyone who is blind from achieving their dreams. I can’t wait to see all the things my son will accomplish as he gets older. He will teach others to see with their heart before seeing with their eyes, just like he has taught me.
Blindness | Braille | Unlimited Potential Featured Image Description:
Photo of seven-year-old Ashton who is blind wearing glasses. Ashton has dark hair and is looking in the same direction as the camera. He is wearing a blue button up shirt and a rust-colored cardigan. His mom’s hands, Hilda’s hands are on his shoulders, although you can’t see her face because the photo is just of Ashton’s beautiful brown eyes.
Additional Image Descriptions:
Ashton Skiing With Dad & Ski Instructor
Photo of Ashton holding a white bamboo pole, and wearing an orange neon vest that reads “Visually Impaired Skier”. He is also wearing a white ski helmet, black ski pants, and ski gloves. He is smiling while he stands in line for the ski lift, with his dad and his ski instructor.
Ashton in ICU
Ashton is laying on a hospital bed with an IV and his head completely bandaged in a room in the Intensive Care Unit. He is wearing a blue hospital gown and he has his eyes closed.
Hilda, Ashton & Little Sister
Hilda (mom) with dark hair in a rust jumper dress, is looking down at Ashton and smiling. He is standing right next to her holding her right arm and also smiling. He is wearing a blue button-up shirt under a rust cardigan. His three-year-old sister is standing in front of them smiling too.
Little Sister & Ashton At The Playground
Ashton is sitting on the top stair of a playground structure, looking towards the left. His white cane is resting on his knees and he is wearing a mustard-colored hoodie with blue pants and black vans shoes. His three-year-old sister is standing next to him on the right side and she is trying to look over the playground bars. She is wearing a mustard skirt, with a white shirt and black shoes. She also has dark hair and is wearing a gray bow to hold it back.
Ashton Reading Braille
Ashton is sitting at his kitchen table reading a braille book. He is looking in front of him as he feels the braille letters with both of his hands. He is wearing an olive-colored striped sweater. There is a sign behind him on the kitchen wall the reads “This is Our Happy Place”.
Ashton’s Poem “My Dad is My Hero”
Photo of a tan sheet of braille paper of Ashton’s poem: “My Dad is My Hero.” Next to the poem is a white paper with that reads: Ashton Dunford, honorable mention, Rees Elementary, My Dad is My Hero, Literature Entry, Special Artist Category. This was Ashton’s reflections entry that made it all the way to the state category, he won the District category, the Region category, and then got Honorable Mention for State.
Shows a family of 5 standing together. Hilda is holding her three-year-old daughter and smiling at her. Hilda’s daughter is smiling and looking towards the camera. Her husband Tyler is standing next to them and looking towards the left and smiling at Ashton holding his older sister’s hands.
The family is standing on fall leaves and behind them, there are trees and mountains, they are all dressed in nice clothes for family pictures. Mom is wearing a rust jumper dress with a striped long sleeve wine colored shirt underneath. Her three-year-old is wearing a big blue denim bow on her short dark hair, a gray ruffle long sleeve shirt under a mustard jumper skirt and tan boots. Her husband Tyler is wearing a blue dark denim button up shirt and brown pants with gray shoes. Ashton is wearing a blue button-up shirt with a rust cardigan over it and brown pants. His older sister, Jordan has long blonde hair and she is wearing a green olive dress and black boots. You can tell they are enjoying a beautiful fall evening in the mountains.