Outshining the Spectrum
When Stacy Kinzler’s daughter was diagnosed with autism, the news felt bleak, and she took it hard. But she ultimately saw an opportunity to help others going through the same situation.
By Melissa Tucker/Photography by Amy Carper
Stacy Kinzler began to suspect her daughter Mabry’s speech development was delayed around the time she turned 2. “She didn’t call me ‘mom.’ She didn’t call my husband ‘dad.’ She had about 30 words, and they were sometimes functional and sometimes not. So, she could point to a shoe and say ‘shoe,’ but she was just labeling an object,” Kinzler said. “She would use words accurately, but not to tell me what she was wanting or needing, which is really what communication is about at that age.”
But as a first-time mother and the first in her family to have children, Kinzler didn’t have many toddlers in her circle for playdates or developmental comparisons.
“I remember when Mabry was 18 months old, my sister, who is a speech therapist, suggested that I get a box with objects in it because at that time Mabry wasn’t really saying anything. And I remember thinking, ‘Why is she telling me to do that?’ So, at 18 months I wasn’t worried. At 2 years, I knew kids were supposed to be putting words together, and she wasn’t doing that,” Kinzler said. “I was beginning to get concerned because that was combined with her anxious tendencies. When I brought it up during a doctor visit, the pediatrician said, ‘She made eye contact with me. She’s probably just a late talker,’ and I took the doctor’s word for it because I wanted to.”
Mabry’s speech delay continued, and so Kinzler took her in for a speech evaluation. “I remember going in for the results, and they categorized how severe her speech delay was with ‘mild, moderate, severe and profound,’ and hers was ‘profound,’” she said. “It was hard. It was really hard because I just wanted her to be OK. I didn’t want to be there.”
Mabry was enrolled in speech and occupational therapy at Access Schools. Specialists prefer to wait until a child is older to declare an official diagnosis of autism, so it wasn’t until Mabry was 4 years old that the family received that diagnosis. “At that point, we knew autism was going to be her diagnosis, but getting that information helped us come to terms with it and give us a title for what we were working with,” Kinzler said. Though Mabry was on the right path, getting the guidance she needed, Kinzler still felt shaken and dazed following the diagnosis. The hard part for Kinzler was not knowing how much her daughter would or could progress. “The thing about autism is you don’t know if they’re going to be able to catch on to language or if they’re going to be able to cope with sensory issues, and that’s what was so hard for me,” she said. “When it comes to other disorders or disabilities, a lot of times you know what you’re dealing with, but with autism, you have to wait and see how they develop.”
Mary Garlington, the regional Autism Spectrum Disorder classroom supervisor for Pediatrics Plus, supported Kinzler’s thoughts.
“It really is a wait-and-see game,” Garlington said. “I’ve had experiences where I’ve watched a kid grow from 2 years old to 10 years old and there wasn’t much change over that time. But I’ve also had a kid who was nonverbal and now he’s got a huge vocabulary. You can’t give a cookie cutter prognosis for a kid with autism.” The disorder is so unpredictable, the treatment for each child essentially must be individualized, Garlington said. “There’s not a blanket diet. You can’t say this is going to work for all children with autism. Each child develops regulatory behavior that works for them. Hand clapping calms down Sally. Jim’s regulatory behavior is rocking. Suzie sucks her thumb. You have to really look at why are they doing that—if it’s because they’re stressed out, or auditorily sensitive. Or they can’t tolerate the visual stimulation that’s happening around them,” she said.
For Mabry, once she began occupational and speech therapy, Kinzler saw large improvements in her vocabulary and language. “It all started to come together for Mabry as far as communicating. They used picture symbols, and she’s really visual, so being able to see the word with the picture really helped her understand what communication was all about,” she said. “And once she began to understand, she took off, and that’s what’s so amazing about her. All of the things that were such an issue for her in the beginning, they’re no longer an issue.”
When Mabry was halfway through her kindergarten year at Access Schools, her teacher reached out to her parents to suggest it was time for Mabry to transition out of her classes. “Her teacher told us that she felt like she had taught Mabry all that she could, and it might be time for her to move on to another school,” Kinzler said. Mabry was excelling in reading and communication and was ready to take those skills and enter a typical classroom. “That was very exciting and very scary for us. Access had become our home and we were comfortable there, and she was now going to be expected to keep up in a typical classroom setting. That transition was bittersweet, but she’s really been thriving in her new school. Her teacher is aware of her diagnosis, but I don’t think the kids in the class know.”
Mabry has had an amazing transformation. She is a creative, energetic, highly social 9-year-old. “She loves to write books at the dining table, and loves to swim and wants to join a swim team. She is well-liked by her classmates and really loves hanging out with her friends.”
Being the dedicated mother to a daughter with autism, Kinzler also had to discover her own path—with its own difficulties—in her journey with Mabry. Soon after Mabry was referred to local specialists for autism spectrum disorder, Kinzler realized she needed help, too, and that many other local parents might also need the same mental health support she was lacking.
“I realized on my own I need to go talk to someone because I was struggling, even though I had an amazing support system. My family was incredible. I had great friends. We had the funding we needed,” she said. “I had everything in place, and I still was depressed and lost and struggled, so for those parents who don’t have the support system they need, I don’t know how they do it.”
Once she spoke with a therapist and began working on her own state of mind, Kinzler wondered what her next step should be.
“When Mabry started school, I was home all day by myself, and I always thought I would have two kids, but this whole situation was so challenging for me, I wasn’t sure if that was best,” she said. “So, I started to think about how could I use this experience to better myself, and it made me want to go back to school.”
She ultimately landed in the mental health counseling program at the University of Central Arkansas in Conway, where she’s in her second semester of practicum.
“I hope to one day have a practice that specializes in helping families with a member who has special needs. Because I think their challenges are so unique and being there, I get it. So, to work with a therapist who already understands, and who can be empathetic to what parents are going through, would be great,” she said. “I would really love to serve those families.”