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Becoming a Crusader for Our Children

Featured image description is in the body of the post.

Nothing brings out the crusader in us like becoming a parent, especially when we have a child with special needs. Gracie Benedith-Cane is a remarkable mother and crusader for her visually impaired son. A few months ago I wrote the following introduction to “3 Blind Mice Are Stylish Mice With A Purpose,” an article featuring Gracies work.

Gracie and Wani image description is in the body of the post.
Gracie and Wani

One of the most pervasive and persistent misconceptions about blindness is the theory that we cannot appreciate beauty. What many people don’t understand about blindness is that it is not a matter of seeing vs not seeing. Blindness is a vast spectrum where the majority of people who are blind have some residual sight.

I’ve been following Gracie and her son Wani on Instagram for quite some time and what immediately caught my attention was her charming logo. The three blind mice who also happen to be the characters in Gracie’s children’s book “What’s Cool About Braille Code School?” are very stylish looking images. And of course, they look quite cool with their white canes. The book was “written to inspire, uplift and give confidence to children who are visually impaired as well as inform sighted children about braille and special needs awareness.”

If you’ve heard of Gracie, you may have seen her in the media as her work has been getting some national recognition. She’s been on local news, NBC’s Today Show, and Passage to Profit Radio Show, to name a few.

Getting To Know Gracie

As I said in my intro, though I’ve followed Gracie for quite a while, I’ve only recently spoken with her by phone. A request to feature her on Bold Blind Beauty ended up being a two-hour-long call. As a fellow parent and disability advocate, Gracie and I discovered we shared many commonalities. From the moment we greeted one another, we excitedly began talking about our work and exchanging ideas on how we might help one another.

Since Bold Blind Beauty’s Cane EnAbled series focuses in part, on parents of blind and visually impaired (B&VI children), Gracie agreed to answer some questions about her experience.

  1. Since the majority of the world is sighted many people are never exposed to or know of people who live with blindness/sight loss. Before your son was diagnosed what was your level of understanding about how blind people live their lives?
    • I did not have any understanding about the lives of blind or even visually impaired people… I only understood the experience with watching tv shows like Little House on the Prairie when the character Mary went blind. That was my first experience in seeing how someone reads Braille as well. 
  2. Gracie, you are an incredibly fierce and passionate mom whose love for her children is undeniable. It must have been heartbreaking when you learned of Wani’s diagnosis. Can you tell us what led to his diagnosis and how it made you feel? 
    • Well, when Wani was 2 months I saw that he had rapid movements in his eyes so I went to his pediatrician who then recommended me to go to an ophthalmologist. He examined Wani and told me Wani was not going to have 100% of his vision. At 11 months he had his 1st MRI and the findings were that Wani had Septo-Optic Nerve Dysplasia. I was DEVASTATED and the devastation lasted for almost 2 years! I felt lost, alone and confused as to what and why this all happened. 
  3. With Wani being your firstborn everything was new to you. After you received his diagnosis how did you manage his care? Were there service providers readily available to assist you to meet Wani’s needs and help him meet critical milestones?
    • His pediatrician, the wonderful Dr. Liza Natale gave me information about services and specialist for Wani. I got ALL the services meaning ophthalmologist, endocrinologist, and 5 therapists to come into my home 5 days a week to give him the therapy that he needed in his very young age. 
  4. From the moment we learn we are about to bring a baby into the world we have expectations of having a ‘perfectly’ healthy child. As a parent of multiple children with and without disabilities is there a difference in how you feel and/or interact with your children? 
    • There is no difference on how I feel or interact with them. I give them all that they need when they need it. Giving them hugs, guidance, attention and most importantly LOVE! With Wani, I have to do things slightly different for better understanding and safety as to what he does not see and my 2nd child, my daughter Niara understands fully and even assists her brother in so many ways. Their relationship is So Special to see. My youngest son, 2 yr. old Zaire was just diagnosed moderately autistic and I have services and therapist in my home again. My Life!!
  5. How did Wani’s sight loss influence you come up with the idea of your book “What’s Cool About Braille Code School?” 
    • I was at an office called Invent Help to see about a patent for my product and the man whom I went to see kept looking at my 3 blind mice logo and told me that I should do something with them. It created ideas on how to use them. I saw how sighted children reacted to Wani everywhere we went. Wani did not have sighted friends. So I decided to write the book to give sighted kids a better understanding as to what the life of a blind child is like; to create a conversation and interaction between them. 
  6. What advice would you give to new parents who’ve received a diagnosis that their baby has a disability? 
    • I would tell them that I can relate with their experience and that although they may feel whatever they are feeling they MUST be PROACTIVE! It is VITAL to be proactive, do the research on the diagnosis and seek all the services that their child needs.  MOST of all I would tell them they are special people to have had a special needs child SO it is also vital to PRAY for guidance, LOVE and LEARN your child. By doing all of this I would promise them that all will be fine and that their child will begin to show them that all will be fine!
  7. Would you like to share additional thoughts on blindness/sight loss or how we as a society can improve how we view disabilities in general? 
    • I would like to share that no one should assume that when they see someone with a white cane or a wheelchair they should automatically feel so sorry for the person or assume they are not ABLE. Give them a moment/chance to show you their capabilities!! Also, society is so far behind on giving the blind and VI more access to supermarkets, clothing and toy stores! Braille should be EVERYWHERE not only on bathrooms, exits, and elevators… they want to be able to shop and do all the things sighted people can do. 

Summary

There is no one-size-fits-all approach to raising a child with special needs and every family situation is different. However as a parent of a child with special needs, its an instinct to learn all you can about their diagnosis to help them learn to live a fulfilling and independent life. Like Gracie said in her comment, she was at first devastated to learn of Wanis sight impairment then after a period of time, she discovered his particular needs and how best to help him to achieve his goals.

Connecting With Gracie:

Image Descriptions:

  • Featured Image: A photo of Wani and his two siblings. L to R Niara, two-year-old Zaire and Wani are standing outside holding hands. Wani is holding his white cane in his left hand.
  • Gracie is standing hugging Wani while they pose for the camera.
  • A gallery of three images of the blind mice: 1) the logo is an illustration of three blind mice each of whom is holding a white cane 2) cover of the book “What’s Cool About Braille Code School” contains the illustration of three blind mice who are standing in front of a school building in red and white coordinating school uniforms 3) the back of the book with a summary of the books content.
  • The second gallery of three photos: 1) Wani is standing with his white cane 2) a photo of sneakers with the right/left braille patches on the tongues 3) a clear package of the left/right patches.
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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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Trust Is Key To Unlocking Confidence & Independence

Trust Is Key To Unlocking Confidence & Independence featured image description is in the body of the post.

Trust Is Key To Unlocking Confidence & Independence

My other goal is to teach the community that people with visual impairments are just anyone else. They just use additional tools to access the world. This access should be universal and a normal part of day-to-day life.

~Michele Danilowicz
1. Michele Danilowicz image description is in the body of the post
#1. Michele Danilowicz

I am a Michigan-based Teacher for the Visually Impaired (TVI) and a Certified Orientation and Mobility Specialist (COMS). My undergraduate degree is in teaching elementary and special education with a focus on visual impairments. In addition, I have a masters degree in Specific Learning Disabilities and Orientation and Mobility for Children. For 14 years I’ve taught students aged 3-26 years old.

My passion is teaching students to help them gain confidence and independence so they are successful adults. I work with students on accessing and using the technology and tools they need to live independently after they age-out of the system.

Oftentimes, students with visual impairments are led to believe they can’t be successful, independent adults. So the most important part of my job is building trust with them. This enables them to believe me when I tell them that they can do anything.

How Trust Delivers Results

I had an elementary student who lacked confidence and hesitated while crossing streets. His parents were fearful and did not want him crossing a street on his own either. He was a fourth grader and at this time was not independently doing what his peers were. Together we went out weekly rain, snow or shine to work, navigate the neighborhoods, and cross intersections. So he was able to walk to friends houses to play and hang out.

I never pushed him if he ever felt uncomfortable to cross. We would cross the street when he built up his confidence. He achieved all his goals that year and crossed at stop signs and even small, lighted intersections. Once he began, he advanced so quickly after he gained confidence and is now unstoppable.

Building trust with parents is crucial also. So after he mastered some of these skills, I invited his parents to a lesson. His parent’s witnessed how confidently their son now crosses intersections, independently and safely. Seeing him progress was so rewarding!

The Long-Lasting Effects Of Trust

Recently, a former student contacted me to tell me she was accepted to a dual masters program. This student and I worked together ten years earlier. I was beyond excited to hear that she is starting a master degree!

She has been living independently since starting her undergraduate degree. Now she is moving across the state by herself to start and complete her master’s program. This student also made a huge transition in her life and is transgender. I was so grateful to hear from her and learn that she trusted me enough to share with me, her transition. The trust and confidence that she has built is amazing!

Passion & Pursuit of Personal & Professional Goals

2. Two women presenting image description is in the body of the post.
2. Two women presenting

My other goal is to teach the community that people with visual impairments are just anyone else. They just use additional tools to access the world. This access should be universal and a normal part of day-to-day life. Part of my job is to teach awareness in local schools about the tools people use who are visually impaired. I also spread this awareness to the public about what helpful accommodations they can use. Along with how to help (or not help) people in the community.

Recently, I was teaching an accessibility workshop to third graders. One of the students stopped me before I walked into the classroom. She said she knew someone who was blind and felt sorry for them. My immediate response was there is no reason to feel sorry for someone who is visually impaired or blind. They are people just like you or me they just access the environment differently. I told her how I knew many successful people doing amazing things. They read by using braille and travel the community and even the world, independently with a cane. The cane helps them to “see” where they are going.

I began the presentation and thanked the students for coming to hear about how everyone can be independent and successful. Everyone just approaches it differently. This is one of the most important parts of my job, educating the public on how and when to help. To not pity visually impaired or blind people, but to appreciate how they navigate the world with the tools at their disposal. When the average person realizes how independent the VI community members are, it gives them a whole new level of respect. Respect is most important, not pity.

3. Table of materials image description is in the body of the post
3. Table of materials

Featured Image Description:

A woman talking while holding up a white cane looking off camera. There are backs of participant’s heads watching the woman present about white cane safety.

Collage Image Descriptions:

  1. Pedestrian Walk Sign: Woman (O&M instructor) is holding a folded white cane, smiling looking off camera, standing at a detectable warning next to a pedestrian walk sign.
  2. Bus Stop Shelter: Woman (O&M instructor) smiling at camera holding a folded white cane standing next to a bus stop shelter.
  3. A city bus. 
  4. Boarding Bus: The back of a woman (O&M instructor) walking onto a city bus. 

Additional Image Descriptions:

  1. Close up of Michele Danilowicz with long brown hair in her 30s smiling at the camera. 
  2. Two women presenting on cortical visual impairments. The power point presentation behind them says: “Tips for Providing Interventions cont.” One presenter is looking at the camera and smiling. The other presenter is looking at the audience holding up a red Elmo stuffed animal and a red and yellow stuffed monster. They are both standing behind a table full of red and yellow materials and toys. 
  3. Table with materials scattered across, a light up magnifier, dome magnifier, Braille writer, telescope, two vision simulation goggles, Braille book, large print book, large Braille cell drawn on paper with the numbers 1, 2, 3, 4, 5, 6 next to the dots and worksheets to learn Braille for print readers. 

Connecting With Michele:

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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: