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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.

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Holly Lynn Connor Changes Viewpoints

Holly Lynn Connor Changes Viewpoints Featured Image Description is in the body of the post

Holly Lynn Connor Changes Viewpoints

It’s takes a village to raise a child.
It takes a child with autism to raise the consciousness of the village.

~Elaine Hall

Holly Lynn Connor, the young lady you are about to meet today, is mesmerizing. To give you an idea of what I’m talking about check out this YouTube video of her singing. While I’ve been following Holly on Instagram for some time, it was only recently that I learned her story. I knew she was blind, I knew she had autism, and I also knew she was extremely talented. What I didn’t know was her backstory and how she came to be who she is today. Today, Holly’s Mom, Katie, invites Bold Blind Beauty readers into her beautiful daughter’s life. Enjoy! ~Stephanae

The Diagnosis

1 Holly Lynn Conner image description is in the body of the post.
1. Holly Lynn Connor

On November 22, 2004, Holly Lynn Connor was born in Seattle, Washington with no complications. From day one, we noticed Holly never seemed to look at us and cried nonstop. We were assured by the pediatrician that her eyes were simply developing at a slower rate and not to worry. By four months Holly showed no improvement and was diagnosed with Septo Optic Dysplasia (“SOD”) and Panhypopituitarism (“Hypopit”).

A person with SOD has optic nerves that are small and poorly developed. Instead of having over 1 million nerve fibers from each eye to the brain, there are far fewer connections. Holly is rare in that she was affected in both eyes and could see little to nothing at birth. When Holly was diagnosed, there were minimal online resources and support groups. I felt alone in the world with no answers. To date, there are still no explanations as to what causes SOD.

Besides being blind, at an early age Holly displayed signs of autism (obsessive-compulsive behaviors, single words language, etc.). The combination of being blind and autistic really made for a difficult time, particularly the first 4 years. Until she was three-years-old, she:

  • wouldn’t walk outside,
  • eat solid foods,
  • go anywhere with fluorescent lighting,
  • sleep through the night,
  • wear shoes or any clothing below the knees or elbows.
  • And she cried pretty much nonstop.

Improvements Achieved Through Treatments

When she was four-years-old, we took her to China for seven weeks to receive stem cell treatments. The effect was miraculous. While the treatment was geared towards her vision, we saw a nearly 50% improvement in her autism almost immediately. Roughly two years later, her vision improvements also became apparent. Her vision increased from an inch or two to seeing contrast and movement up to 10 feet away.

Due to Holly’s successful treatment in China, we booked another round of stem cell treatment when she was twelve. This time it was to Panama. The trip to Panama was slightly more abbreviated at only 7 days. Since that visit, she has seen additional autism reductions. In addition, her vision, while still being blind, picks up contrast and movement up to 30 feet.

Two clear-cut examples of autism reduction are the reduction in Holly’s anxiety levels and the willingness to expand her diet. Pre-Panama her anxiety levels were nearly debilitating at times. As is common with most kids with autism, Holly would only eat about 5 things prior to Panama. Though she always objects at least once to a new food, now she eats nearly everything we give her.

Holly Playing Piano With Hands & Feet image description is in the body of the post.
2. Holly Playing Piano With Hands & Feet

Holly’s Musical Prowess

What makes Holly so unique and special is her musical talent, something we discovered at a very young age. When she was only a month old we played a Winnie The Pooh tape and she immediately stopped crying. After that, our house was filled with music 24 hours a day. It seemed to be the only thing that calmed her.

  • When Holly was 6 months old, she began playing the piano keys with her hands and her feet.
  • At age 1, she could count to 100, sing the alphabet backwards, and play simple notes on the piano. It was at this point where we realized she has instant memory.
  • By Age 2, Holly could play any song by ear on the piano.
  • At 3, we discovered she had perfect pitch, vibrato, and she could tell identify keys of songs on the radio.
  • When she was 4 we started piano lessons with a teacher specifically trained for kids with Autism.
  • By age 7, she could recognize and play complex chords on the piano. Holly also memorized and played songs on the piano after hearing them just once.
  • When she was 8, Holly picked up the harmonica and recorder. This was also around the time she started being ok in public. So we attended live theater and kids’ performances every weekend.
3. Standing at Piano image description is in the body of the post.
3. Standing at Piano

A Naturally Born Performer

Holly joined her first choir at her elementary school when she was 9 years old. She also began working with a vocal coach and attended her first vocal/piano classes. The facility worked specifically with kids with disabilities and paired them with typical kids. This year marked her first performance at a summer camp in which they highlighted her singing. The seed was planted for enrolling Holly in musical theater.

When Holly was 10, she had her first piano recital and first vocal competition. She sang opera and musical theater pieces and took 1st place for her age group. Shortly after, we moved to St. Louis for my husband’s job.

Holly started playing the cello in the school’s 5th-grade orchestra program and joined her first formal choir (STL Children’s Choirs). She also was in her first musical, Space Pirates. Being a new endeavor for everyone involved, she did her scenes sitting in a chair..

The following year, age 11, Holly started taking voice and musical theater classes. She was also cast in her second ever show, Seussical. This time she was doing limited choreography and even had a speaking line.

At age 12, Holly was cast in 8 consecutive shows with 3 named roles. The roles included Glinda in Wizard of Oz, Fairy Godmother in Cinderella, and Mama Ogre in Shrek. We also started her in ballet lessons.

Singing, Dancing & Acting

By the time Holly turned 13, it was an even busier year. She:

  • was cast in 10 consecutive shows with 4 named roles:
    • including Queen Victoria in a Little Princess,
    • Mrs. Darling in Peter Pan,
    • Bird Woman in Mary Poppins,
    • and Cinderella’s Mother in Into the Woods.
  • started taking tap lessons,
  • joined the school jazz band playing piano,
  • joined another choir, and
  • wrote her first original song.

That brings us to the present. At age 14, Holly is immersed in the arts 7 days a week when not in school. She is in 3 choirs, 2 jazz bands, acting and dance classes, private lessons for acting, ballet, tap, and piano.

Holly works out every morning on her spin bike. In addition, she also trains weekly with a personal trainer to help with low muscle tone. She is part of a tandem biking club half the year. At any given time she is in 2-3 musical theatre productions. Right now, she’s excited to be playing Medda Larkin in Newsies and Madame Aubert in Titanic.

Holly Continues Blossoming

The last few years of Holly’s development have been life-changing for Holly and for those around her. St. Louis musical theater community has been extremely accepting and inclusive. The directors have all been accommodating and understanding of both her visual and autistic needs. More than that though, the kids she performs with are more accepting than I could have ever imagined. They are always looking out for her and we never worry about her being in a safe space.

Now that she is fully immersed in the arts community in St. Louis and working with such a large number of kids, Holly seems to have friends everywhere she goes. For the first time ever, Holly found a best friend who’s become a huge part of her life. They talk every day, eat lunch together at school, and are in choirs and musicals together regularly. Her friend, Abby, has an effect on Holly which is hard to quantify. Through her friendship with Abby, Holly is learning more of what it means to be a typical teenager. She’s learning how to interact with others on a social level, and how to have empathy. Empathy is very difficult for someone with autism.

Being The Change

On January 1st, 2019 I began an Instagram awareness project, @365withhollyconnor, where I post Holly answering a daily question. Using the book, “Q&A a Day for Kids” by Betsy Franco, followers can learn about Holly’s life. They can also learn how she navigates the world being both blind and autistic.)

Recently, a girl from the local high school approached me. She told me that her twin brother has autism and Holly changed his life.  Peers began befriending him as a direct result of Holly’s involvement at school and her social media presence. Holly is showing it’s okay to:

  • talk to someone who is blind and autistic
  • be friends with someone who is blind and autistic
  • be unique and different

Holly is extraordinarily talented and we continuously keep her engaged with the world around her. Remaining involved in musical endeavors will position her for a greater opportunity for future success in life. Through the many ways she interacts with the world, Holly continues to influence and change how people see her. Hopefully, this will translate into how they see, interact with, and accept people with all abilities.

Holly Lynn Connor Changes Viewpoints Featured Image Description:

In the featured photo Holly is outside under a white event tent playing a baby grand piano. She is wearing a light print dress and her long hair is draped down her back. Her white cane is propped up in front of the piano.

Additional Image Descriptions:

  1. Professional headshot of Holly with long wavy red hair framing her pretty face. She is wearing an emerald green top.
  2. Black & white photo of Holly as a toddler sitting on a piano bench with her hands and feet on the piano keys.
  3. In this photo, little Holly is standing in front of the piano with her arms reaching up to play the keys. She is wearing a tan jumper paired with a white polo shirt and red (with white trim) Mary Jane shoes. Her blond hair is in pigtails.
  4. A photo grid with two photos. The first one is of a theatrical performance with Holly and a number of her peers in costume on stage. Holly and two characters on either side of her are wearing southern belle type gowns. In the second photo, Holly is singing solo holding a microphone. Outdoor photo of Holly casually dressed in a black jacket, jeans, and a white graphic tee. Her hair is pulled back and she has bangs and is also wearing sunglasses.
  5. This photo grid also contains two photos. In the first one, Holly and four friends are standing while posing for the camera. All five girls dressed for dance practice with black leotards and loose tops. Holly is in the center. The second photo is Holly with her best friend Abby. They are sitting on a pile of gym mats and Abby has her left arm around Holly’s shoulder.

Connecting With Holly:

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WOTM 9 Featuring Emily Davison

Featuring Fashioneyesta – Prepare to be Awed!

I find it interesting how we can meet people in this high-tech virtual world we live in and feel a kindred spirit that can’t be duplicated even in face-to-face interactions. For me Emily Davison is one of those people who, while there is a span of decades between us, we share common philosophies.

Collage of 6 Images of Emily Davison Fashioneyesta.com
Emily Davison
Fashioneyesta

Emily, who spent her entire life in South East London, is currently studying for a degree in English Literature at Goldsmiths University, London. As a Journalist on the Huffington Post UK, Emily simultaneously works at the University as a paid Student Ambassador. In July 2012 she founded Fashioneyesta an online Fashion and Lifestyle resource for blind and partially sighted people.

Fashioneyesta.com serves to present visually impaired people with the tools, the skills and, the knowledge of fashion, beauty and, style to enable them to use their remaining senses to gauge the world of fashion and to create their own unique style.

An advocate at her core, Emily also works with a number of different charities and organizations to raise awareness of Fashioneyesta. She functions as a fashion correspondent alongside the Royal National Institute of Blind People (RNIB’s) Insight Radio and Able Radio.

Being blind or visually impaired does not automatically mean that you have to be unfashionable. That is the message at the crux of my blog “Fashioneyesta.”

Fashion has always been a huge element of Emily’s life. When she was growing up, she was captivated by old Hollywood films and style icons like Audrey Hepburn and Grace Kelly. The fashion houses, vintage stores and many delightful chic-lits were the inspiration for her to delve into the history and the beauty of fashion. By the time she was 14, her mother bought Emily her first designer bag and the rest as they say, is History!

“Fashioneyesta” aims at giving visually impaired people the right set of knowledge and skills to be able to develop their own unique style.

Emily describes her style as feminine, with exotic flares, vintage twists and a lot of costume jewelry. She’s very versatile and changes her look as her mood dictates. One day, she may step out in an Asian inspired outfit and on another day go full-out Vintage with Victory Rolls and a 1940s inspired tea dress.

My thesis as a fashion blogger is that style should reflect your own personality and that you should put your own stamp on an outfit.

Septo-optic dysplasia, a rare congenital anomaly, is the condition responsible for Emily’s visual impairment. The condition has disabled her optic nerves, leaving her with no sight in her right eye and 10 percent central vision in her left. Even with this debilitating disability Emily has not allowed it to hinder her love for fashion.

Now, with her beautiful Guide Dog, Unity, in tow, Emily is exploring the world and expanding her blog. A blog that she hopes will inspire other visually impaired people to embrace fashion, old and new, to find their own unique style.

Always remember to be daring and don’t conform to what society expects you to be!

Mainstream media is good for bombarding the public with news of gloom and doom. In such a fast-paced world as we live in today I am always overjoyed to hear about young people taking it upon themselves to make positive change happen. Emily you are to be commended for your selfless volunteerism and your dedication to banishing the aged-old stereotypes of blind and vision impaired people. Thank you Emily for all you do. Because of you we are one step closer to eliminating the erroneous misconceptions by education and building awareness.

For more information on Fashioneyesta or Emily Davison please see links to her social networks at the end of this post.

“The best way to gain self-confidence is to do what you are afraid to do.” ~Author Unknown

Social Links

“My blog is featured every week on RNIB’s Insight Radio at 2:15 pm on the Daily Lunch every Friday. I have also been featured on BBC4’s inTouch radio. I do regular blog posts every week, they cover different topics from certain styles and how to achieve them to a selection of my top picks for a particular month.”