American Action Fund for Blind Children and Adults
Future Reflections Fall 2019 PASSAGES
by Katie Sears
From the Editor: In 2018 and 2019 Holly Connor was the first-place winner in the Grades 6-8 category in the Nationwide Braille Readers Are Leaders Contest. I was intrigued when her mother explained that Holly is intensely involved in community theater and reads novels on her BrailleNote during her down time backstage. In this article, Katie Sears tells her daughter's story. You can learn more about Holly and her rising career by visiting www.hollyconnor.com.
On November 22, 2004, Holly Lynn Connor was born in Seattle, Washington, with no complications. However, from day one she cried nonstop, and we noticed that she never seemed to look at us. During many visits the pediatrician assured us not to worry; Holly's eyes were simply developing at a slower rate than usual.
By the time Holly was four months old she showed no improvement. At that point she was diagnosed with two rare conditions, septo-optic dysplasia (SOD) and pan-hypopituitarism (hypopit). In hypopit a person has decreased secretion of the hormones produced by the pituitary gland. These hormones control growth and several other factors. The optic nerves of a person with SOD are small and poorly developed. Typically, a person has more than a million nerve fibers from each eye to the brain, but people with SOD have far fewer connections. Holly is rare in that she is affected in both eyes. She could see little to nothing at birth. Few online resources or support groups were available when Holly was diagnosed, and I felt that I was alone in the world with no answers. To date, the cause of SOD remains unknown.
In addition to being blind, Holly displayed signs of autism from an early age. She had obsessive-compulsive behaviors and spoke in single words rather than full sentences. Until she was three years old she wouldn't walk outside, eat solid food, go anywhere that had fluorescent lighting, or sleep through the night. She refused to wear shoes or any clothing below the knees or beyond the elbows. And she cried pretty much constantly. Needless to say, those first four years were a difficult time!
When she was four years old, we took Holly to China for seven weeks to receive stem-cell treatments. The effect was miraculous! The treatment was geared toward her vision, but we saw nearly a 50 percent improvement in her autism symptoms almost immediately. Roughly two years later improvements in her vision also became apparent. Before we went to China she could only see objects that were an inch or two away. As her vision improved she could see contrast and movement up to ten feet away.
Encouraged by the success of the treatment in China, we booked a round of stem-cell treatments in Panama when Holly was twelve. The trip was shorter this time, lasting only seven days. Since that visit Holly has seen additional reductions in her autistic symptoms, and her vision improved still more. She now picks up contrast and movement up to thirty feet away.
One of the most clear-cut examples of the change in Holly's autism symptoms is the reduction in her anxiety level. Before we went to Panama her anxiety was nearly debilitating at times. Another change is her increased willingness to expand her diet. Like most kids with autism, Holly would only eat about five foods prior to our Panama trip. Now she eats nearly everything we put in front of her, though she always objects at least once to a new food. Pizza, burgers, and tacos top the list of her dinner preferences, though we keep her on a diet that is free from gluten, soy, sugar, and dairy products. In 2020, Holly will go through another round of stem-cell treatment, most likely in Panama again. We are hopeful that centers offering this treatment option will open in the U.S. in the reasonably near future.
Holly has extraordinary musical talent. 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 twenty-four hours a day. Music seemed to be the only thing that calmed her.
When Holly was six months old we placed her at the piano, and she started to play the keys with her hands and feet. At age one she was able to count to one hundred, sing the alphabet backward, and play simple notes on the piano. At this point we realized she has instant memory.
By age two Holly could play any song she heard by ear on the piano. When she was three we discovered that she has perfect pitch and vibrato. She could tell you the key of any song she heard on the radio. Holly learned Braille at age three, and she has had a passion for reading ever since. She is a big fan of The Land of Stories series, as well as the Harry Potter books.
When she was four years old we started Holly on piano lessons with a teacher who was specifically trained to teach kids with autism. By age seven she could recognize and play complex chords and memorize and play songs after hearing them only once.
When she was eight Holly picked up the harmonica and the recorder. At around this time she started to be more comfortable in public, so we attended live theater and kids' performances together every weekend.
At age nine Holly joined her first choir at her elementary school and started working with a vocal coach. She also attended her first vocal and piano classes at a facility that worked specifically with kids with disabilities, pairing them with typical kids. That year she gave her first performance at a summer camp. The song was "Do-Re-Mi" from The Sound of Music, and she sang the part of Maria. This experience planted the seed for enrolling Holly in musical theater.
When she was ten Holly gave her first piano recital and entered her first vocal competition. She sang opera and musical theater pieces, and she came home with first-place prizes for her age group.
Shortly after that first competition we moved to St. Louis due to my husband's job. The move proved to be a huge turning-point in Holly's life. Prior to the move we knew that St. Louis has a good school system, particularly in regard to accommodations for children with special needs. However, we did not expect the extensive opportunities Holly would have for getting involved in musical endeavors. These new opportunities set Holly on the path to maximizing her potential.
In the first year after our move, Holly started to play the cello with her school's fifth-grade orchestra program. She also joined her first formal choir, one of the St. Louis Children's Choirs. Holly even sang in her first musical, Space Pirates. As this was a new endeavor for everyone involved, she performed her scenes sitting in a chair.
The following year, at age eleven, Holly started taking voice and musical theater classes. Through contacts we were making in St. Louis, we realized it was time to engage Holly in the next level of musical theater. It was time for her to move a step beyond the productions where everyone in the class or camp gets to be in the show.
The first time Holly was exposed to a traditional audition process involved a show called Seussical. Between all the waiting and the process of learning choreography on the fly, we worried about how she would handle the whole experience. She handled it terrifically, and now she was going to be in her second show. This time she did limited choreography, and she even had a speaking line. Seussical proved to be a great learning experience. Between the late evening rehearsals, the professional environment, and the immersion in a show with children ranging in age from six to nineteen, Holly experienced something we previously thought would be out of her reach.
After that show, the schedule started to fill very quickly. The next year, when she was twelve, Holly was cast in eight consecutive shows with three named roles, including Glinda in Wizard of Oz, Fairy Godmother in Cinderella, and Mama Ogre in Shrek. Incidentally, she takes her BrailleNote Touch pretty much everywhere she goes, and she is known for reading during down time backstage, of which there is plenty.
At that time we also enrolled Holly in ballet lessons. We realized she needed to work on her dancing, both for the ability to participate more fully in every show and for the body awareness she could gain through dance training. Holly does not enjoy the process of learning dance or the choreography for a new show. In fact, dance is probably one of the most challenging things she has to do. But her will is strong, and she continues to work on it.
Age thirteen was an even busier year. Holly was cast in ten consecutive shows with four 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. She started taking tap lessons, joined the school jazz band playing piano, joined another choir, and wrote her first original song. Her song is called "A Different Story." It is about being blind and explains how her vision has changed, both literally and metaphorically, throughout her life. Her middle-school choir performed "A Different Story" at a recent school concert. It was so beautiful to see something Holly created come to life!
Through the contacts she has made in musical theatre, Holly was asked recently to give a presentation to an elementary school as part of its diversity and inclusion week. The thirty-minute presentation consisted of a PowerPoint highlighting much of Holly's story. It included a few short videos from when she was younger and ended with several songs. Holly played two songs on the harmonica, sang two songs which she accompanied on the ukulele, and played two songs on the piano.
Today, at age fourteen, Holly is immersed in the arts seven days a week when she is not in school. She is in three choirs and two jazz bands. She takes acting and dance classes and private lessons for acting, ballet, tap, and piano. She works out every morning on her spin bike, trains weekly with a personal trainer to improve her muscle tone, is part of a tandem biking club half the year, and is in two or three musical theater productions at any given time. Right now she's excited to be playing Grandma in The Addams Family. She is also competing at the National Braille Challenge for the second time this year.
The last few years have been life-changing, not only for Holly, but for everyone around her. The musical theater community in St. Louis has been extremely accepting and inclusive. The directors have all been accommodating and understanding of Holly's blindness and her autistic needs. Better still, the kids Holly is with in these shows are more accepting than I ever could have imagined. They always seem to be looking out for Holly, and we feel confident that she is always 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. In fact, for the first time ever, she has found a best friend who has 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 that is hard to quantify. Holly is learning what it means to be a typical teenager, how to interact with others on a social level, and how to have empathy (sometimes very difficult for a person with autism).
On January 1, 2019, I launched a project on Instagram, (@365withhollyconnor). I post Holly answering a daily question from "Q&A a Day for Kids" by Betsy Franco. The goal is to raise awareness about Holly's life and how she navigates the world being both blind and autistic. Recently a girl from the local high school approached me to say that her twin brother has autism and that Holly changed his life. Because Holly has been involved in school and has a presence on social media, peers started to befriend her brother. Holly is showing other teens that it's okay to talk to someone who is blind and autistic, and even to be friends. It's okay to be unique and different.
Holly has extraordinary talents. We try continuously to keep her engaged with the world around her and involved in as many musical endeavors as time will allow. We want to position her for the best chance of future success in life. Through the many ways she interacts with the world, Holly continues to change how people see her and, hopefully, how they see, interact with, and accept people with all abilities.