This is the story of a little girl who felt terribly afraid. So afraid that at times she was unable to speak or move. Although this story has its share of sadness, it ultimately ends in triumph, and with a parade.
I first became acquainted with Kayla when I was participating in a documentary on social anxiety disorder called, Afraid of People. The producer sent me an early "rough cut" of the documentary to watch; I was particularly drawn to the girl with the strawberry-blonde hair. She appeared tormented every time anyone spoke or looked at her. She would gaze downward, her hair falling forward, obscuring her face. Over the years, I've corresponded regularly with her mother, Sherry, keeping abreast of Kayla's progress. Both Sherry and Kayla have given me permission to share this story in hopes that it will help others.
Preschool: Suffering in Silence. Kayla started preschool when she was almost four-years-old. It was rough going from the beginning. Kayla wasn't able to initiate any type of play with the other children. It was as if she had become paralyzed with fear. Sherry thought it was just because she had never been in a school setting before and hoped that she'd adjust in time.
Unfortunately, Sherry learned from her preschool teacher that Kayla was not participating in any of the activities unless it was something that could be done directly from her seat. For example, after the children used their crayon boxes they were to put them back onto a shelf. Kayla was unable to do this. The teacher told Sherry it was as if they were having a power struggle to see who would put the crayon box back. She told Sherry that Kayla was just being "stubborn."
Another problem Kayla had that year was snack time. After eating their snack, the children were to throw away their napkin. Again, Kayla was unable to leave her seat. The teacher's solution was to tell Kayla she couldn't have snack unless she threw away her trash. Kayla literally couldn't do it, but the teacher again viewed her as being oppositional and defiant. Sherry said, "When I learned my poor child was sitting in a classroom with 25 other students and watching them eat snacks - all because she was afraid - I was angry."
Sherry recalled a Halloween party at school when Kayla wouldn't participate in any of the activities. The kids, dressed in their costumes, were expected to parade down the hall into a large room where the parents had gathered. Instead of entering the room, Kayla buried her face in the wall and broke down in tears.
Throughout this time period, Sherry talked with their family doctor, who told her Kayla was simply shy and would outgrow it. Sherry thought to herself, "Okay, maybe that's the case, but I've never seen anyone so shy."
Kindergarten: The Frustration Mounts. When Kayla started kindergarten, Sherry had high hopes. She thought Kayla would have the best teacher she could imagine - a former school counselor. Sherry did all she could to inform the teacher of Kayla's issues ahead of time, but it seemed to fall on deaf ears. Kayla suffered many questionable practices. For example, her teacher singled her out for not being able to say the Pledge of Allegiance and made her stand out in the hall.
Kayla developed major separation anxiety during this year. She started crying from the moment she woke up in the morning about having to go to school. Sherry would walk her into the classroom, then Kayla would chase Sherry out of the room when she left, crying hysterically. Sherry received notes from Kayla's teacher telling her what a bad day Kayla had, how the children were frustrated with Kayla because she didn't talk, and how she saw only a "bleak future" for Kayla.
Toward the end of Kayla's kindergarten year, Sherry first heard the term "selective mutism." She did all the research she could on the problem, talked again with her family doctor, and made an appointment for Kayla to see a psychiatrist.
The psychiatrist did, in fact, diagnose Kayla with selective mutism, but didn't do much else in terms of helping Sherry or her husband know what to do to help Kayla. He recommended medication, but because he did not explain his rationale, they didn't want to consider this option. Thinking back on it, Sherry believes if the doctor had taken more time to explain the medication and what it was supposed to do, she would have been more open-minded.
First Grade: A Breakthrough. Kayla finally got an understanding, supportive teacher for her first grade year. This was the year she slowly began to thrive. She started out the year bonding with a boy who had cerebral palsy. Sherry described him as a loving little boy who always gave out hugs to kids. Kayla sat by him and his aid; because of his gentle ways, Kayla felt secure and accepted. "I think Kayla could look at him and his struggles with his speech and see that he didn't let it hold him back in life," Sherry said. Kayla began reading out loud to this boy, and she started talking to her teacher in a whisper.
Also during this time period, Sherry found a new doctor, Dr. Elisa Shipon-Blum, a recognized expert in selective mutism. Sherry said, "She was a dream come true for us. She had a complete understanding of everything I said about my daughter." She took the time to educate them about the benefits of medication, and they started Kayla on a very low dose.*. She also recommended cognitive-behavioral therapy for Kayla. Sherry noticed positive changes in Kayla almost immediately. She began to get out of the car at school with a little more confidence and she even started waving to the crossing guard. "I will never forget the first time she yelled out the car window to one of her friends after school," Sherry said. "It was as if she finally discovered the voice she never knew she had."
Sherry remembers that Kayla's fears started disappearing in other areas, as well. "She started wanting to do things she'd never even tried before, like climbing trees and hanging upside down on her swing set." Sherry wondered if she had wanted to try these things for so long, but never had the courage to do so.
Kayla Blossoms: Kayla's school years kept getting better and better. During her second grade year she began to speak out loud in small groups within the classroom. She developed a wonderful group of friends who accepted her for who she was. Because she was doing so well, she was slowly taken off of the medication. She had a few setbacks, but was able to continue interacting and speaking with her friends. The teacher would meet with her after school one day a week and do fun activities with her to build a foundation of trust.
By junior high, Kayla was still very quiet but was able to speak up when necessary. In 10th grade, she participated in a skit in the school talent show. She was a big hit, and even did some improvisational humor later in the evening. Kayla continued to progress throughout high school, had friends, and joined some clubs. She was also inducted into the National Honor Society. For this, she had to write an essay about someone who inspired her. She chose to write about Lady Gaga and how Lady Gaga is able to be her own person and stand up for what she believes, regardless of what others might think.
Kayla is currently in her senior year of high school. At the beginning of the year, she was given assignment to write a reflective essay about her journey from junior high to her senior year. She titled her essay, "Breaking Out of My Shell."
A few weeks ago, Kayla was voted homecoming queen of her school. She was the center of attention that homecoming week, riding in the back of a convertible and waving to all the people gathered along the parade route. Yes, the little girl, who was frozen in fear in her preschool Halloween costume, had grown into a young woman who loved a parade.
*Please note we are not advocating any particular medical treatment.
Copyright 2011 Barbara Markway
Follow Barb on Twitter