Posted on Leave a comment

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 5 Comments

Mainstream Assimilation In Education Lights the Way

Mainstream Assimilation In Education Featured Image Description is in the body of the post.

Doreen never lets the perception of others prevent her from living a rich, fulfilling, and productive life.

~Bold Blind Beauty

Mainstream Assimilation In Education Lights the Way

Mainstream Assimilation in Education image description: Colored alphabet braille blocks used for learning braille.
Colored Alphabet Braille-Blocks

One of the best things about advocacy is highlighting the work of fellow blind and visually impaired (B&VI) persons. This work is critical in the mainstream representation of B&VI persons.

Sharing stories through Women On The Move, Blind Beauty, and Cane Enabled shifts the focus from disability to ability. Mass media portrayal of blind people performing extraordinary accomplishments are remarkable, yet we cannot dismiss the importance of advocacy. Advocacy with more representation of B&VI people will promote opportunities and light the way for others.

Recently, a good friend of mine introduced me to Doreen Lundgren – an advocate and Woman On The Move. Doreen, a newly elected President of ACBW (American Council of the Blind – Wisconsin), is a Milwaukee-based adaptive technology specialist. As a multi-talented, person, she is an educator, singer, and certified expert in Unified English Braille Code or UEB. Also a voice-over artist, Doreen creates live sound effects with her voice.

The Introduction

Three qualities I noticed on my initial call with Doreen was her wicked sense of humor, candidness, and sense of adventure. At four years of age, she developed a love for downhill skiing which she continued into her adulthood. In answering my question what was the most daring thing she’d ever done? – skydiving topped the list.

Doreen was born totally blind to parents who are blind. She is one of four siblings. People are amazed at how well Doreen functions in a sighted world, not realizing for her, blindness is her normal. What makes her outstanding is her natural singing talent, intelligence, and her wide variety of interests. The most unique one was learning that she’s an old-time radio enthusiast. She listens passionately to “ Old Time Radio Drama ” on Wisconsin Public Radio, “The WGN Radio Theater,” and “When Radio Was” on WBBM, both out of Chicago. Recently she attended an old-time radio conference in Chicago.

Teachers engage attentively with presenters Carla & Doreen Lundgren in early literacy methods class
Teachers engage attentively with presenters in an early literacy methods class

Advocacy Blossoms From Thirst For Knowledge

Doreen, who attended Pius XI Catholic High School, advocates for the assimilation of B&VI persons into mainstream education. Her passion for history, math, and English evolved at Pius, which led to her interest in the theater and music worlds.

Possessing a wide vocal range, Doreen is a talented singer. She performs as a soprano and an alto in a variety of a cappella, choral, classical, and popular music ensembles. And, if you need to know anything about the 80’s rock band, Queen, she is an authentic ‘Queeniac’ and the unofficial world authority on everything Queen!

Doreen studied computer technology at Milwaukee Area Technical College (MATC) where she became a skilled computer professional with a particular focus on assistive technology. A sports fanatic, her active participation in cheerleading, swimming, baseball, and basketball, developed her enthusiastic love for, and encyclopedic knowledge of professional sports.

Sharing Her Voice With Bold Blind Beauty

Since Doreen is a voice-over artist, we thought it would be cool for her to breathe life into Abby. Abby aka Abigale is our bold and stylish fashion icon who always walks in confidence with her white cane.

Meeting Doreen couldn’t come at a better time. We’re working on multiple projects and refining our focus to better support our mission. The prospect of hearing the voice of Abby doing product reviews and sharing beauty fashion and style tips is exciting.

Doreen never lets the perception of others prevent her from living a rich, fulfilling, and productive life. I can’t think of a better person who epitomizes Abby!

Mainstream Assimilation In Education Featured Image Description:

A photo of Doreen Lundgren (seated at a table) one of the featured speakers at Alverno College, in Milwaukee. Her presentation was about literacy learning from the perspective of being blind.

Additional Images:

  • Colored alphabet braille blocks used for learning braille.
  • A photo showing the teachers engaged attentively with presenters in an early literacy methods class at Alverno College.
Posted on 18 Comments

Managing Social Anxiety & Sight Loss

Managing Social Anxiety & Sight Loss

While appearing confident is important it’s more important to articulate what our needs are. Because I appear as if I’m in control people forget I can’t see and sometimes this hurts more than helps. I think part of my struggle here is the delicate balancing act of being confident yet knowing when to request assistance.

Bold Blind Beauty

These Four Walls

Recently I’ve talked with several of my blind & visually impaired friends about managing social anxiety and blindness. For many reasons, anxiety, as it relates to our sight loss, is a topic we don’t talk about frequently. On a personal level, one of my reasons is simply the fear of my fear. I feel like if I talk about it all the scary things in my mind they will come into existence. So how do I handle social anxiety and sight loss? The easy answer is I fake it.

Truth be told I’ve always lived with social anxiety and my blindness kicks it up several notches. A panic attack always lurks just beneath the surface whenever I’m in unfamiliar or heavily populated open spaces.

When you can only see blurry shapes, colors, and movement, it’s not ideal. Adding noise to this equation can overwhelm my senses compounding the anxiety. For example in a shopping mall environment, the expectation would be humans and service animals here and there. Without any central vision, I cannot see fine details so people’s faces are nonexistent. Whenever my grown children come by they have to identify themselves so I know who they are. So imagine being in unfamiliar territory with unknown people—no one stands out even people I know.

While being within the confines of my home makes me feel safer than anywhere else there are some challenges. When I’m home alone I know exactly where everything is, on the flipside when my son and grandson are here it can be chaotic. I rely on everything being in its place but when you share living space, there are bound to be problems.

The Moment Of Truth

Since retiring several years ago, my life mainly revolves around being at home on my computer. Blogging and social media have given me an outlet to connect with and live life vicariously through others. Even so, there is the inevitable grocery store run, doctor’s visit, or an occasional special outing that requires leaving home. Then there’s the dog.

As an animal lover and dog owner, it’s my responsibility to walk my Mollie. One would think that since I’m familiar with the area where I live this would be an easy thing to do right? Nah, it’s not that simple. See I live in a condominium complex without sidewalks which means I have to be constantly alert. In addition, I cannot use my cane when walking Mollie which makes me more vulnerable as drivers don’t know I can’t see. Many of my neighbors also don’t know I can’t see because I guard my privacy—so there’s that.

Today was a minor turning point for me as I admitted my fear and pushed through anyway. The first day at a new gym can be a little unsettling to anyone I suppose. For me, I was downright terrified but I’d put it off long enough and decided to be honest.

Because I’d called in advance the facility was expecting me but I opted not to disclose my disability until in person. With white cane in hand, I followed my son into the building. Once inside I met Tammy, the owner of the gym. I briefly explained my fears and she immediately put me at ease. She explained the gym’s offerings and told me she’d create a workout plan for me in large print. I was over the moon and may for the first time ever, take a couple of classes.

Lessons Learned

Today was a very good day. Was I still anxious? You bet I was! But being upfront with Tammy about my blindness and explaining what I can and cannot see helped her to help me. For far too long I let my fear control me and was afraid of being vulnerable, judged and appearing foolish.

I also think that while appearing confident is important it’s more important to articulate what our needs are. Because I appear as if I’m in control people forget I can’t see and sometimes this hurts more than helps. I think part of my struggle here is the delicate balancing act of being confident yet knowing when to request assistance.
Since empowerment is a key component of Bold Blind Beauty I sometimes feel torn about admitting my perceived flaws. Then there’s another part of me who understands that real empowerment and confidence comes from knowing when to seek help. It is not a sign of weakness to ask for help.

My anxiety like my blindness is a part of me and will more than likely remain with me until my last breath. I do have a few additional tips that I’ll share at a later date. For now, though, I’d love to hear your thoughts on this topic. Do you ever talk about your fears?

Managing Social Anxiety & Sight Loss Image Descriptions:

The featured image, as well as the gallery of three photos, are of me on the treadmill. I’m wearing navy exercise capris, teal tank top, teal & navy sneakers and navy knotted head scarf.

Posted on 7 Comments

Sight Loss Story Is More Than Meets The Eye

Sight Loss Story More Than Meets The Eye featured image description is in the body of the post.

When I succeed, I am proud of myself but don’t take it as a blind girl win. When I fail, I forgive myself and think of an alternative way to succeed.

~Jenna Faris

Sight Loss Story Is More Than Meets The Eye

My sight loss story has no true beginning or end as I was diagnosed with congenital blindness at four weeks old. For reasons unknown to anyone, my limited vision declined steadily throughout my life. Blurry shapes and contrasts I could make out at five years old are now mere memories. Perhaps what little I can see today will one day be a memory, as well.

Not much is known about my family’s rare hereditary condition. It doesn’t have a name, and there is no cure for it.
With half of us blind, and the other half sighted, my family is split down the middle.

Since I was legally blind at birth, I never went through that difficult transition period of growing accustomed to sight loss. But, that is not to say my journey has been without challenges. Instead of facing the realities of vision loss, I had to face my sighted peers’ perception of blindness. I was raised in a family where blindness was simply viewed as a personal characteristic, like hair color or favorite food. It was a shock to find that the majority of the world viewed blindness differently. Many see it as a great limitation, a heavy, shameful burden, and an insurmountable barrier that would affect every aspect of my life.

More Than My Disability

Throughout my teenage years, I struggled to prove that I was just as good, worthy, and capable as my sighted friends and siblings. I battled bullying, an eating disorder, and blind brothers who were arguably better at being blind than me. Failure, I felt would prove everyone right, and success would prove everyone wrong. So I went out of my way to oppose stereotypes because I hated being known as the blind girl. It was important for me to break the mold and to stand out for anything other than my lack of sight. Making a point of wearing makeup, and refusing to wear sunglasses. I made a point of wearing makeup, absolutely refused to wear sunglasses, and I threw myself into my education. My urgent approach to my studies could only be described as obsessive because I wanted to be known as the:

  • A+ student
  • Starbucks-obsessed-freshman
  • chick in the blue shirt

Any title would do, as long as it did not center around my disability.

I can’t recall freedom from the gut-wrenching feeling of failure when someone referred to me as the blind girl. Maybe it faded around the time I connected with cool blind people my age. All I know is, one day the words didn’t make me feel bad anymore. I am a blind girl however I am not ‘the blind girl,’ but maybe to them, I am. The phrase no longer makes me feel less than what I am, it merely reminds someone of who I am. While I know my blindness doesn’t wholly define me, if this characteristic stands out to most people, that’s fine. I know I am more than my disability, and if they get to know me, they will too.

Empowerment Gained Through Acceptance

Today I refuse to wear sunglasses not to prove a point, but because they limit my vision and light perception. I now wear makeup when I feel like it, because it makes me feel good inside. And I achieve in school because I know this will further my career. When I succeed, I am proud of myself but don’t take it as a blind girl win. When I fail, I forgive myself and think of an alternative way to succeed.

I recently graduated with a bachelor of science in food, nutrition, and health from the University of British Columbia. This summer I’m working part-time as a server while scoping out further career options and working on my book series. I’m just your average twenty-something dreamer with a whole life of possibility ahead.

My sight loss journey may never truly be over, but I’m okay with that. I hope it continues to help me become the human I want to be.

Connect with Jenna:

Sight Loss Story Is More Than Meets The Eye Featured Image Description:

Jenna stands at the back of a cruise ship. She wears a deep blue shirt that matches the ocean and sky behind her. Her dark brown hair streams down her back as she smiles serenely at the camera.