Autism diagnosis won't dim future for Shirleys
By KD Reep
Autism. Asperger syndrome. Developmental disorders. These terms have pervaded our language in the last 30 years, but autism spectrum disorder is still a mystery to most. When Shannon and Steve Shirley of Ferndale learned of their daughter Stella’s diagnosis, they weren’t surprised but definitely in denial.
“My first reaction was a mix of shock, sadness and fear,” Shannon says. “It’s difficult to describe, but it is a lot like having the wind knocked out of you repeatedly. I had suspected that we may hear that diagnosis, but I was also still in denial about it.”
According to the National Institutes of Neurological Disorders and Stroke, autism spectrum disorder, or ASD, is a range of complex neurodevelopment disorders, characterized by social impairments, communication difficulties and restricted, repetitive and stereotyped patterns of behavior. Although ASD varies in how it presents itself and in its severity, it occurs in all ethnic and socioeconomic groups and affects every age group. In fact, experts estimate that one out of 68 children by age 8 will have an ASD (Centers for Disease Control and Prevention: Morbidity and Mortality Weekly Report, March 30, 2012), and males are four times more likely to have an ASD than females.
“Stella’s language milestones were significantly delayed at age 3, consisting of between 25 to 50 words,” Shannon says. “She would say something once, but she might not say it again for months. Other times, she would look at us with meaning while babbling what seemed to be complete sentences, but everything was incoherent to us. She also was severely restricting her diet by smell and texture, and she would line up her toys in rows or spin things in circles endlessly. We were referred to Developmental Center in Little Rock by our pediatrician, and that’s where Stella was diagnosed with autism.”
Because the symptoms of ASD vary so widely, autism may not be diagnosed until the child is older. Early indications of ASD can include no babbling or pointing by age 1, no single words by 16 months or two-word phrases by age 2, no response to his or her name, loss of language or social skills, poor eye contact, and no smiling or social responsiveness. Later, children with ASD may exhibit an impaired ability to make friends as well as initiate or continue a conversation with others, an inability to participate in imaginative or social play, preoccupation with particular objects or subjects like cartoons, and inflexibility to change, particularly to routine.
“There were times in the beginning where it was really a day-by-day experience—maybe even hour-by-hour,” Shannon says. “We had information coming at us from all directions and so many huge choices to make. Now that we have made it past those, we are able to focus more on our plans for the future. We have a routine that functions much like any other family with a preschooler now, and I work to ensure the goals we are working on in each of our therapy sessions continue in our home.”
Shannon, who earned her bachelor’s of science in math and two master’s degrees—one in management of information systems and the other in business administration from the University of Arkansas at Little Rock—left her career at Southwest Power Pool to focus on Stella’s care.
“I had more than 15 years experience in information technology prior leaving
SPP,” she says. “Leaving was the end of an era for me personally, but it is my sincere hope that I can put all of my education to good use helping our little girl. It would be a dream to put that education to use helping other children like Stella as well, and I may find a way to do that in the future.”
Shannon’s husband, Steve, also works in information technology at Southwest Power Pool, and she credits him with being a constant source of strength for their family. “He is a loving husband and a deeply compassionate father,” Shannon says.
“My mom, who is a telecommunications contractor, also lives with us and helps
with Stella’s care, and Stella’s sister Jasmine, who is 10, visits us regularly. Stella
adores her ‘sissy.’ In fact, our family has been very supportive since the diagnosis,
and everyone accepts Stella for the beautiful ray of sunshine that she is to all of
us. We couldn’t imagine our lives any other way. She brings us all such joy.”
Today, Stella attends developmental preschool at Pediatrics Plus in Little Rock. According to Shannon, the Shirleys researched all of the schools for special needs children in their area, touring each of their top three choices.
“For me, it came down to where I personally felt most comfortable having
Stella,” she says. “Pediatrics Plus felt like home right from the start, and I felt that Stella could thrive in the environment that they create for the children. I am lucky to have found Stella’s Pediatrics Plus family because they have made such a significant difference in my daughter’s life. I will be forever thankful to them.”
Today, Shannon focuses her education, experience and energy in helping her daughter make progress with a smile on her face. “She is a wonderfully happy little girl and just like every other 4-year-old in so many ways. There is so much love to fill your heart and keep you going each day. Stella has taught me so much about the world and what is truly important,” she says. “To see things through her eyes and to share her perspective as she grows is an amazing privilege. There are struggles, but there are also shining gifts. Our hopes and dreams for Stella’s future are no different than those of any other parents. Every day she surprises us with her ability to adapt and succeed. We are working every day with her team of doctors, therapists and teachers to ensure she has the best chance possible, and we celebrate every success with her.”