The first part of this article is a revisit to another little dancer who fought bravely for her place on the platform. Larry and his mothers story finds this young man still fighting through what life has dealt PART ONE DANCING WITH DISABILITIES"
Autumn 2001 has become another memory; the brightly colored leaves now are brown and disintegrate beneath the foot as you walk. December is in it last heady throes with Christmas lights twinkling and dancing reflecting on sugared crystal snow banks. A new year will have been born when Dancers readers open their magazine. A new year and a new look for "Dancer"! Still I see the rose bush in my garden "Audrey's Rose" the leaves long fallen and just the pods left behind on seemingly dead branches. However I know that come next spring that rose will once again blossom and fill the onlooker with pleasure as the breeze carries the heady perfume aloft. Audrey's story appeared in Dancer a few years ago, a brave little dancer with a heart and a thirst for the dance.
"There is a silver pink rose that has struggled to bloom in very adverse conditions in my front garden. Over the years it has faced adversity in the form of falling trees, winter winds, flooding, huge snowdrifts laced with salt. Still every spring, much to my amazement, this wonderful little rose comes back. It is my fault that it is planted in totally the wrong place. I have thought many times of transplanting it but I have held back. You see, this particular rose is always the last rose of summer and reminds me every year of another struggle." A rose by any other name."
Her given name was Audrey Ellen. However, this wonderful little girl always wanted the name 'Rose'. Like my last rose of summer, that tries valiantly to bloom and release its heady perfume, to experience all that life can offer, in those last glorious days before the killing frost of autumn. So it was with our 'Rose'. Audrey was born with Gorham Syndrome. For nearly nine years she fought with quiet courage and dignity all that was thrown at her. A tracheotomy tube was inserted in her throat when she was three days old. "She will never talk!" but she did! Eventually her vocal chords became severely damaged, but if you were quiet and patient you could still hear her, like a breeze kissing the treetops. It was with her eyes that Audrey communicated with the world around her. Huge eyes that would shine with excitement or grow quiet and closed when the pain was overwhelming
During Audrey's brief sojourn in this world, she discovered the world of Highland Dancing. She begged her mom to let her learn these dances that had endured through many lifetimes. Her mother acquiesced. Gorham Syndrome is also known as the " disappearing bone disease". But this insidious disease was no match for the courage and heart of this tiny child. Audrey did indeed wear the kilt and don the shoes and step up on the platform. Her tartan was the tartan of Scotland 'St. Andrew's" (the patron Saint of Scotland and whose torment also lasted longer than his peers) Our "rose" would watch the Premier dancers and see them defy the pull of the earth. Whilst she would wait in line with the other children, waiting to step up on that platform, they would laugh and talk about the dancing and the judges and how nervous and scared they all were. Not once was she made to feel different, unwanted or openly stared at. This wasn't always the case in the rest of her life
The last time I saw Audrey was at a Highland Games in Ligonier, PA. These games are held every September in the magical "story book forest. It was one of those rare last days of summer, a perfect September day. Every color was vibrant; the blue of the sky couldn't have been any bluer, the sun any brighter with just an edge of autumn in the air. Audrey was there doing what she loved most. Dancing to the pipes, drinking in the sights, smells and sounds of the day and laughing with her eyes. Her family was very excited as she was going to have surgery in a few days to remove the huge tumor that had grown on her neck and shoulder. Audrey didn't survive the operation. The doctors were astounded that a child whose bones were barely showing up on the X-ray, and when they did looked like lace, had actually been dancing a few days earlier. They didn't know Audrey. Her bones may have been breaking with every movement, but not her wonderful little heart
Audrey's mother said of her remarkable little girl " She gave her all. She was a miracle. She taught us so much whilst she was here. Audrey loved the dancing. We would tape the older dancers and she would watch them over and over again. The dancing always gave her so much joy." As I watch my "last rose of summer" struggle to survive to bring joy in those last fleeting days I cannot help but think of another "rose". So my rose will not be transplanted and I will wait for the bud to open again this September and remember a little girl with shining blonde hair and laughing eyes and her struggle and her phenomenal bravery."
How many times have we sat or stood watching a Highland competition, mother to mother, teacher to teacher discussing the children's performance on the platforms. Comparing the dancers in the competition to the "standard". How many times have the words, " that number 104 has no turnout" or perhaps "number 431 is petering out by the end of the dance, no energy" "what is up with that dancers timing?" Or perhaps " nice little dancer good technique but is screwing up in every dance, shame? Callous in our overview of the day's competition we leave reminding ourselves "must get little Susie to practice more, or to work on her point!" How many other mothers and teachers are leaving that same competition thrilled that the child with asthma made it through, the child who struggles with a learning disorder has managed to reach the goal of getting the step sequence right. One such Mom writes:
"My daughter Meghan, 10, dances with a 'hidden' disability. She has severe learning disabilities that include difficulty with memory recall, sequencing, and gross/fine motor skills among others. Can you imagine dancing on the platform trying just to remember the dance, the steps and the order of them and also how to move to make each happen? Also, highland dancing helped her get through her Dennis Brown boots and bars quickly, as after dancing a year we found she had intoeing at the feet, knees and hips. First position is no longer the struggle it used to be! Every year she dances for her school's talent show...everyone anticipates her performance. She was even commended on her most recent medal tests. I have often felt that disabilities in the world of highland dance need to be addressed, before my daughter gives up because everyone is so 'place' oriented, and no matter how often she competes, she doesn't place, though she is very proud of her excellent medal test results she always seems to achieve...she is wise enough to know that no matter how many people you are dancing with, the true competition is against yourself, and feeling you did your best and are improving and learning.
Or Larry's mother:
Larry was born normal, but had seizures after the childhood immunizations, the MMR in particular, he lost his speech, slowly declined, had petit mal seizures. Special testing by the school district at 3 showed him to be below the one percentile in speech, his motor skills and motor planning skills were poor, and he was predicted to have a life in special education. He was labeled PDD, (pervasive developmental delay) apraxic, dyspraxic, severely handicapped, among other things. He had almost no attention span, play skills, speech, nor any other age appropriate skills.
I was devastated, traumatized, and amazed, I was so distraught I lost over 50 pounds and became a walking skeleton; I could not walk half a block. I was, literally, worrying myself to death with guilt over having given him these shots. One day I felt very near death and told myself, he's not going to get better if I die"
Larry's mom researched "I contacted researchers all over the world who were struggling with the same questions I had. I spent up to 8 hours a day reading and asking questions on how to recover a child from vaccine damage."
Larry under his moms guidance started to improve she writes "and then one day I tried to teach him myself the easiest step in Irish dance, a leap 2 3. He Could not get it at all, not at all. This was when he was about 5 years old. We next tried basketball, but got laughed off the court by the other parents. They did not realize he was mine and asked, "What's that monkey doing on the court?" Larry was disoriented as he was on a new medication and was even more distracted than usual. Some grandparents near me watched him and laughed harder and harder at him. They did not realize he was mine. I should have told them but my cheeks were burning in anguish as they continued to laugh at him, wondering why he was staring around and not following the ball like the other kids. I went home crying, it was an awful experience.
At 7 he had further improved and I asked my older kids' Irish dance teacher(Patricia Kennelly) if he could try some lessons and she said, let's give it a go! She was very open to the idea and treated him like any other dancer. I Worked extremely hard with him at home, it took him longer to learn the steps. I tried multisensory ways of teaching him, helping him to memorize the words of the step, saying the words at night before bed, tracing the steps with our hands, showing him over and over how to do the steps, also tons of praise helped.
The teacher was delighted to find out that he had timing. We felt he Could be taught to dance if he had this most crucial ability. After the first lesson we were both amazed. She did clapping with the kids in the class and he was able to clap in time to the music.
We still hardly dared to hope he would really be able to learn to dance. Progress came slowly at times. Leg strength was lacking. He bravely made the effort but his thin legs did not have normal strength. The dancing practice helped to develop his strength, and I know it worked his neurons, furthering his development and recovery from the shock of the vaccines. We continued to work and he continued to improve. We entered competitions.
The rest is history; he won 6 medals last weekend, out of 7 dances. He has learned the hard shoe dances, also, although everything comes with tons of work, nothing is easy, much patience is required, but this little guy is a worker and he wants to win. He looks forward to competitions, and loves being on stage! The dancing has helped improve his self esteem, needless to say and he loves it."
The children we see on the platforms each have their own story and I will continue to bring those stories to Dancer's readers and how some of the teachers have found creative ways to bring those children to the platforms and to the dance. And just maybe the next time we criticize the way a dancer is holding their arms it may be because the child has mild spina bifida. Not all success is rewarded with a medal or a trophy. Many children of the dance take home with them something a lot more meaningful than a piece of metal and a ribbon.
Questions and comments Loraine Ritchey, 1127 W.4th Street, Lorain OH 44052 Telephone 440.246.6046 E-mail lritch7@yahoo.com or loraine@celticcafe.com