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Autism Acceptance Month: From diagnosis to acceptance, two southwest Kansas families share their journeys

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Brooke Applegate, a Head Start classroom teacher at Bright Beginnings Early Childhood Center, Dodge City USD 443, and her husband Eli, a physical education teacher at Ross Elementary School, USD 443, started their autism journey when their son, Andrew, was diagnosed at 2 ½ years old, right before the start of the COVID-19 pandemic in 2020.

“For me, I kind of always had a feeling, that teacher gut in me had that. But hearing it as a parent is very hard,” Applegate said. “Honestly, I went through the grief of it, all the things you think parenthood is going to look like for you. I had to take a step back and think of, ‘what now?’ That idea of what it’s going to be like is kind of put on hold until you know what his needs are going to be because they change all the time.”

Before his diagnosis, Andrew underwent an early childhood intervention screening at 8 months old after a delay in speech and motor skills. When he was around 18 months old, Applegate noticed a significant delay in speech and at around 2-years-old, they began the process of testing for autism. Andrew was often sick with respiratory infections, and eventually was diagnosed with Type 1 diabetes. His adenoids were removed and he underwent hearing tests.

“Once all those medical things were checked off, it helped us get our diagnosis,” Applegate said.

Resources for autistic children are limited in southwest Kansas, she said. Arrowhead West, Inc., not-for-profit organization serving children and adults with developmental disabilities, only serves kids up to age 3. During the pandemic, Andrew still received Arrowhead West’s infant/toddler services, but much of it was delivered over the phone or via Zoom, and he was given activities to do at home.

Now at 5 years old, Andrew is in kindergarten at Ross Elementary and in a regular education classroom.

“Our biggest thing as parents is we wanted him to be around neurotypical children,” Applegate said. “They can learn how to interact with him. It was important to pick a school that would fit our needs.”

They met with different principals and special/regular education teams to determine which school could best accommodate Andrew’s needs and would meet him where he’s at. His parents helped prepare him for this transition by driving by the school to show him where he’d learn and play.

Along with learning in a regular classroom, Andrew can attend P.E., with his dad as the teacher. The Applegates worked with the school to modify Andrew’s day. He starts the morning off a little bit later, giving him the option to wake up gradually, eat breakfast and have a smoother transition. He started the school year going to school from 9 a.m. to 2 p.m. He now stays an hour later but dismisses 15 minutes before the other kids.

In the past six months, Applegate and her husband have noticed a change in Andrew’s social interaction with his peers, now playing with others instead of by himself.

“Now he loves getting kids to chase him and play with him,” she said. “He’s playing with his brother now at home. Before, Andrew did his own thing. Another skill he loves is sociodramatic playing, or acting out imaginary situations and stories, and pretending to play with Bluey characters, pretending that they’re talking and playing with animals and using skills he’s never used before.”

Andrew is nonverbal/pre-verbal. He does not say communicative words yet, but gestures to things he wants or needs. In the past year, Applegate has noticed Andrew is now making vocalization, is more attentive and makes eye contact.

He uses an augmentative alternative communication (AAC) device, which is a tablet that helps him communicate. To also help him become verbal, he sees his speech therapist, Janae Powell, twice a week.

Powell is a speech language pathologist (SLP) and speech/language therapist for the Southwest Kansas Area Cooperative District #613, working at Bucklin USD 459 and Ross Elementary School, Dodge City USD 443. She also does private therapy and is an adjunct professor at Fort Hays State University, teaching the social communication class. She said she has immersed herself in working with autistic people and believes this is how she has learned best.

“Evidence-based practice, we often forget, has a portion that includes client experience and their wants/needs,” Powell said. “Listening to autistic people is what guides me. I am a specialist in learning, approaches and support, but I am not an autism specialist. Only autistic people are.”

Powell, herself, understands firsthand the path the Applegates are navigating.

Her 3-year-old daughter, Austynn, didn’t show “typical” characteristics of autism, but Powell knew they were there. Austynn communicated in an echolalic way, meaning she was repeating words just spoken by another person, and Powell wanted to get an SLP involved. With limited resources available in southwest Kansas, Powell and her husband, Trever, a weights teacher at USD 459, took their daughter to a specialist in Southlake, Texas. Austynn was diagnosed with autism in Dec. 2023.

“As we navigate telling her that she is autistic and helping her to learn about how she can be supported, it will lead to a better understanding of herself,” Powell said. “She won’t have to struggle and mask or camouflage to fit in and wonder why some things are harder for her. She will know, ‘I’m autistic. Here is how I learn and interact best, here is what I need, this is who I am.’”

Powell and her husband decided to put Austynn in preschool after she turned 3 to help give some consistency in her schedule. Not only does Austynn have her parents in the building, but her grandma, Becky Price, is the preschool teacher at Bucklin Grade School. Powell said that helped with the decision, and noted the Bucklin preschool is focused on play. The kids get a lot of time for free play, sensory play, pretend and symbolic play, etc. This helps build on and gives Austynn chances to show and invite others into her organizational play while observing their form of play.

Powell and her husband coach various sports in the Bucklin school district throughout the year and have varying side jobs.

“[Austynn’s] grown up around it and with the right support, can usually navigate okay,” Powell said. “Though there are times I have had to step back and say no because I know I need to make things more consistent for her.”

Along with consistency, they also have flexible routines for Austynn, following her lead and trying to make sure everything is in place for regulation. Having a big support system full of grandparents, cousins, family friends, coworkers, etc. has been helpful to Powell and her family.

Applegate encourages parents of autistic children to find their people.

“Other moms and parents live it and they’re the people who will know what you’re going through,” she said. “Finding those other moms has been huge for me. Those moms need you as much as you need them.”

Powell said it’s okay to not be okay and that parents of autistic children will face challenges, but their child is not one of them.

“I still struggle constantly with the idea that my child is autistic,” she said. “It has nothing to do with disliking who she is. It is because I know things will be harder; however, it was extremely naive of me to think easier was the better option. She will change the world because of who she is, through the adversity and hardships, not despite them.”

Powell encourages people to ask autistic people what they can do to support them, search testimonies, find neurodiversity affirming social media accounts and read books.

“Listening is always our role,” she said. “That little inconvenience you feel in ‘trying to keep up,’ autistic people feel almost every second of every day in trying to navigate a world that is not easy for them. So really, how “inconvenient” is it for you to listen to become aware, to accept, to celebrate? And maybe someday, we won’t need a month to teach people and to learn, we will just do it.”

According to the Centers for Disease Control and Prevention (CDC), 1 in 36 children in the U.S. have been identified as having autism as of April 2023. Autism is defined by the Autism Society as a complex, lifelong developmental condition that can impact a person's social skills, communication, relationships and self-regulation.

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Posted: Apr 4, 2024,
Comments: 0,
Tags: Autism

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