"She's become much more verbal. She's learned how to advocate for herself."
Before Sophia started school, Harmony never thought her daughter was different from other children. “When she was born I just stared and stared at her. I couldn’t believe I was finally a mother. I wanted to be everything for her.” But when she started preschool, teachers began telling Harmony that Sophia was having difficulty regulating her emotions. She would become very upset, and it was difficult for her to calm down. “I didn’t see it at home,“ remembers Harmony. “It was just a storm that would pass, and we were all still alive. It never occurred to us that she might have a diagnosis.“
It wasn’t until her younger brother Zakkery was diagnosed with autism that Harmony began to see similarities in Sophia. “Females tend to not get diagnosed, whereas males get diagnosed right off the bat. Even today there aren’t many girls in her social skills class.”
Harmony brought Sophia to Children’s Hospital, where she was diagnosed with autism and generalized anxiety disorder. She was paired with several mental health skills trainers to develop relationship skills, communication and self-advocacy, but none of them made a lasting connection. Harmony was frustrated. She wanted her daughter to be invited to slumber parties and be able to eat pizza at a friend’s house. “You wonder if you’re doing enough,” she says. “But it can feel like you’re sending a message that something’s wrong with your child, and that’s not the case.”
Another mom at Zakkery’s school suggested that Harmony check out St. David’s Center. Long after Sophia’s diagnosis, Harmony felt like she and her daughter were finally understood.
Sophia was connected to Kelsey, a mental health professional at St. David’s Center. By that time, she was 9 years old. “She didn’t interact with other kids,” remembers Kelsey. “She sat alone at lunch, she sat alone at recess. She just wanted to read her book.”
In addition to social isolation, Sophia was still exhibiting challenging behaviors at school and sensory issues that made it difficult for her to stay focused. Kelsey began working with Sophia in her home and at school to help her regulate, build her social skills, and make the first steps towards lasting friendships.
“I was kind of nervous at first,” remembers Sophia, now 13 years old. “I thought it was my fault that my other skills trainers didn’t work out, so I was worried it would happen again.” But it wasn’t long before Sophia and Kelsey built a foundation of trust. After a month, Kelsey started joining Sophia at school one day per week. She had just started fourth grade at a new school, and the new building, classmates, and teachers were overwhelming for her. “It was nice to have a life coach, in a way. She showed me how to make eye contact, how to talk about different subjects, and how to ask people questions about themselves.”
“It was good for Sophia to have that touchstone,” Harmony adds. “Someone she could go to that wasn’t Mom. Kelsey was there every week for three years.” Kelsey was not only able to support Sophia’s development, but she was also there for Harmony when she felt overwhelmed. “There were a few times I just hit a wall with it. I didn’t even know why, I just knew I was upset. But Kelsey was there. She lets you say it all, and then you piece it out together. I never felt like she was a ‘therapist;‘ she’s just a natural.“
At the same time, Harmony and Sophia’s relationship began to improve. Sophia learned new ways of expressing her feelings and how to ask for what she needed. “She’s become much more verbal. She‘s learned how to advocate for herself. She’ll say, ‘This is where I’m coming from, Mom, and if you can’t understand it, you still need to respect it.’ And I totally get that. It’s awesome.”
Today, Sophia has many close friends, is active on the student council, and is part of an online fan fiction community where her stories receive thousands of views. She wants to share her experience of having autism and combat the stereotypes and stigmas associated with the diagnosis. When she grows up, she wants to be an animal behaviorist specializing in wolves. But for now, Sophia is preparing for a school field trip to Washington, D.C. next year, where she will travel without Mom or Kelsey. She is looking forward to staying in a hotel with friends, touring the Capitol, and meeting our state representatives, despite her mom’s apprehensions. “But,” Harmony says, “who knows where her journey goes from here? Her language, her self-advocacy…it could be that she stands up in front of that room of people one day and can be that voice.”