Posted on 2 Comments

Blindness | Braille | Unlimited Potential Lesson Learned

Blindness Braille & Unlimited Potential Featured image description is in the body of the post.

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

1. Ashton Skiing With Dad & Ski Instructor

“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.

Ashton in ICU

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:

  1. he would learn to walk later than other kids yet he’d never give up
  2. just like other kids he would learn to run, swim, and play
  3. he would learn how to read braille
  4. while not liking sports somehow skiing would become his favorite one
  5. he would learn to sing his heart out and make everyone smile in the room
  6. 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.

Hilda, Ashton & Little Sister

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.

Little Sister & Ashton At The Playground

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.

Ashton Reading Braille

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.

Ashton’s Poem “My Dad is My Hero”

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.

Entire Family

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.

Entire Family

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.

Posted on 2 Comments

Mac’s Story A New Perspective On Life

Mac's Story A New Perspective on Life

I began following Mac’s story on Instagram when I came across a video of him using his first cane. Watching Mac use his AMD (alternative mobility device) was so cool as I’d never seen one before. My heart was nearly bursting as I witnessed this little guy claim his independence. So I asked Nicole (his mom) if she’d share his story with us and she said yes!

Mac’s Story A New Perspective On Life

#1 Mac's Family photo description is in the body of the post.
#1 Mac’s Family

When my son was 5 weeks old we found out he was blind. At that point, I was overwhelmed with emotion; angry, lost, and in denial. I had no idea of what this meant for our sweet son, Mac, or our family.

There are so many emotions I felt no one could have prepared me for:

  • I felt heartache when I saw other babies looking into their mama’s eyes;
  • feeling of failure as a parent when Mac couldn’t hold his head up or crawl;
  • comments of pity from others when learning about Mac’s diagnosis and blindness.

I was now a special needs mom. This meant I had to learn how to avoid letting these heartaches and struggles lead me down the wrong path. I needed to do something to prepare myself to handle this emotional rollercoaster and new life that we had begun.

Very quickly, we connected with our local early intervention program for the visually impaired. Before we knew it, Mac had a teacher of the visually impaired (TVI) and occupational therapist (OT). These professionals taught us how to aid Mac in his development.

The more we connected with others, I quickly learned of the huge financial deficit for the visually impaired child. I felt compelled to do something to remedy this situation and bring it to light. So I began posting stories about Mac, and what we are learning about how to supplement a visually impaired child’s development. This was an important piece because 85% of all development is incidentally done through vision. Teaching Mac how to meet his developmental milestones without being able to see wasn’t intuitive to us. We are so thankful his TVI and OT are there to guide us.

The Healing Power of Sharing

I never could have imagined how therapeutic it would be to share Mac’s story. The outpouring of support from friends and strangers was so heartwarming. People began to ask for more updates and have specific requests for the next post. They wanted to learn how Mac navigates a new environment or if he seems to have refined his other senses. It was so nice to go from feeling alone and helpless, to feeling supported. Educating others about visual impairments and building inclusiveness was an added benefit. Amazingly, talking about the issue seemed to remove the avoidance and pity from others.

#3 Mac on a swing photo description is in the body of the post
#3 Mac on a swing

As Mac continues to grow, he is learning so much. I had no idea how much intervention is required for our son who is blind. In addition to his TVI and OT, he has an orientation and mobility specialist (O&M) and soon a speech-language pathologist. It’s amazing how much we incidentally learn through vision; even speaking is something that is primarily learned through watching others. We are so thankful for Mac’s team of specialists. This team has helped us learn to embrace this new life and prepare our son to achieve great things.

We have gained the same passion that so many others who are visually impaired have, to change the stigma, fight for the cause, and make a difference. We find ourselves advocating for early intervention and inclusiveness.

Paying It Forward

#4 Mac & him mom photo description is in the body of the post.
#4 Mac & him mom

While we cannot cure Mac’s blindness or give him sight, we can teach the world more about blindness. In addition, we can help make the world more accessible for all people. We’ve started an annual fundraiser, a gala that benefits the local early intervention program that has been so good for our souls. We feel like we are making a difference in the lives of other children with visual impairments by removing some of the financial barriers to accessing the care they need.

Mac has taught us so much in his less than 2 years of life. There is so much more to life than what you can see. You are not defined by your disabilities; they are a characteristic of the amazing person that you are. The uniqueness each of us possesses is what makes this world wonderful. If we learn from one another, our perspective will continuously flourish. While there are numerous challenges, I am so thankful for Mac’s blindness and our new perspective on life.

Mac’s Story A New Perspective On Life Featured Image Description:

Closeup of Mac shows the light blonde haired cutie smiling while he holds onto his blue and white AMD. He is sporting a chunky gray cardigan over a flannel shirt with blue jeans.

Additional Images:

  1. Mac’s family; mom, dad, Mac and his two sisters are standing outdoors in a grassy field posing for the camera. Mom and dad are holding one another and Mac’s sisters are standing in front while mom holds Mac in her left arm. In the background, golden orange autumn foliage can be seen.
  2. Is a tri-panel collage: The first image is in the same grassy field as photo 1. In this image, Nicole is holding Mac in her left arm while her two daughters are each holding one of her legs. Mac is using his AMD on the sidewalk it almost looks like he’s running. In the third photo, Mac’s oldest sister is holding his arms in the air while he walks in the grassy field.
  3. On a clear, sunny autumn afternoon bundled in a blue winter jacket, Mac looks like he’s having a blast on a toddler swing.
  4. A stunning black and white photo of Nicole holding Mac on her lap while he is smiling broadly.

Following Mac’s Story: