Living with Autism: Families cope with lack of services after diagnosis

News Enterprise - 12/12/2017

Landon Thompson rolled and shaped Playdough on Monday morning in Carla Kinder'sPanther Academy classroom.

He used cutouts to make a gingerbread man and played with his friends.

Landon, 3, has autism and is learning how to communicate and socialize in Kinder's preschool classroom. He started preschool late last year and has made significant progress, his mother, Brandi Johnson. She said he went from saying five words to 25 to 30.

Elizabethtown Independent Schools officials say they are seeing a higher prevalence of autism in younger students. Last school year, 32 students with autism were enrolled in the district's special education program. In Hardin County Schools, 142 students were identified in that category.

Nationally, about 1 in 68 children have been identified with autism spectrum disorder, according to the Centers for Disease Control and Prevention.

"We also suspect a lot of kids (have not yet been) diagnosed with autism," said Kelly Graham, principal at Panther Academy, where the district's early childhood programs are housed.

Graham said in past years, the number of students with special needs in preschool and kindergarten significantly have increased.

The higher number of children with autism means an increased demand for services, such as occupational therapy. However, Hardin Memorial Health and other area providers have wait lists for those services.

Jimmy Coursey, manager of outpatient rehabilitation services, said Hardin Memorial has a waiting list of about 40 to 50 patients for occupational, physical and speech therapies. He said they don't have the therapists or space to meet demands.

Johnson takes Landon to therapy in Louisville because it's where she could receive the services he needs.

She said Louisville also has more activities better suited to her son, benefits she wished Hardin County had. For example, a nonprofit in Louisville hosted a sensory-friendly Santa experience last weekend.

"It may be the only time he gets to go," she said.

Other parents of children who have autism have had similar experiences.

"Everything we need for autism, we have to go to Louisville for," said Jennifer Foster, a local advocate whose son, Christian Foster, attends North Hardin High School.

'Thrown to the wolves'

Johnson knew early on Landon wasn't developing like her other children.

"With the fifth kid, you realize things are off or not where they should be," she said.

"The walking and motor skills were great," but she said he didn't babble or speak.

A family doctor referred them to First Steps, the state's early intervention system offered through Lincoln Trail District Health Department. First Steps serves children from birth to 3 years old.

While he was in the program, Johnson took Landon into the Weisskopf Child Evaluation Center at the University of Louisville for a diagnosis. She said she spent more than a year on a waiting list for an appointment.

Dr. Scott Tomchek, the assistant director of the center, said the average wait time for a preschool-aged child is about four to six months. For a school-aged child, it's a six-month wait. He said they are working on cutting that time down.

To diagnose developmental disorders such as autism, Tomchek said different therapists evaluate the child through play and assessments. They also talk with the family about concerns.

"Autism isn't diagnosed through a blood test or MRI, but through interaction with family," he said.

Tomchek said the center receives about 24 to 28 referrals a day but only can work through 26 to 30 children a day.

Weisskopf accepts Medicaid, which can make them a more financially feasible option than going to a psychologist or doctor who might require an out-of-pocket payment.

"Across Kentucky and across the country, there's a real shortage of developmental behavioral services," Tomchek said. "There's not the access the community needs."

Doctors at Weisskopf diagnosed Landon to be on the autism spectrum, Johnson said.

"When Weisskopf gave the diagnosis, it was like being thrown to the wolves," Johnson said. "I did not know what to do next."

'A Life-Saver'

To help navigate the next steps, Johnson found Foster.

"She was a life-saver," Johnson said.

Foster said she felt blind trying to figure out what to do with regards to Christian's treatment and education. Now, she passes on what she has learned to other parents. Foster would like more advocates to walk parents through the steps.

Johnson said her two main resources are Foster and the internet.

Life with Landon is a daily learning experiment, Johnson said.

"He can't tell us what he wants or how he feels," she said.

Landon's a picky eater - McDonald's is his favorite - and he doesn't understand why he can't do what other children are doing. In the morning, Johnson said he sometimes doesn't want anybody talking to him.

He's a fan of the cartoon show "PAW Patrol" and enjoyed playing soccer last season, she said.

Johnson said only parents who have children with autism can understand and help.

Stephanie Thomas understands. Jay Thomas, her 28-year-old son, has autism and he's nonverbal.

She said it's important for parents to have friendships with other parents who have children with autism.

"Sometimes you just need a parent to talk to," she said.

Thomas said the resources in Hardin County have improved since Jay was diagnosed more than 20 years ago. First Steps had just started back then, and now more awareness exists.

She would like to see more training for community leaders.

"Just because a child has a disability, doesn't mean they can only be a janitor," she said.

Foster said she would like to see a mentorship program for young adults with autism and more college scholarship opportunities.

"We could do more," she said. "That's the truth."

'Waiting list for everything'

Once a week, Johnson and Landon travel to Louisville for therapy.

"There's a waiting list for everything," she said of trying to find services.

That's also true at Hardin Memorial Health.

Coursey said there's a high demand for pediatric therapists. He said other options in Hardin County, such as Kids Spot, also have wait lists.

He said patients don't leave therapy very quickly, and a therapist can see about seven to eight patients a day.

Tara Drexler, an occupational therapist at Hardin Memorial, specializes in treating children with autism.

"(The wait list) breaks my heart because these parents want the best for their child," she said. "I couldn't imagine how lost they must feel."

Last year, Hardin Memorial expanded its Therapy and Sports Medicine Center on Ring Road to serve more children and added more therapists.

"It seems the more you add, the more the demand," Drexler said.

As an occupational therapist, she works on fine and gross motor skills, feeding and behavior. She said she sees patients in spurts to work on specific skills and the patients come back to her as issues arise.

For younger children such as Landon, Drexler said therapy involves family education about the disorder, and she tries to help families she sees as much as possible.

She likes working with children who have autism because she can take a holistic approach and work with the entire family. She's devoted her continuing education to studying autism.

Drexler said she's noticed an increased awareness of autism and children are receiving interventions earlier. Still, she acknowledged there's not enough resources in the area for children with autism.

"I'm praying that Elizabethtown can add some more resources," she said.

'Just Having Fun'

Center time in Kinder's preschool class at Panther Academy can look like a free-for-all. Landon and other students in the class can pick where they spend their time and what activities they do.

"They are learning by doing, using hands and exploring their environment," she said.

Students can choose to read, work on a piece of artwork or play table top games, among other activities. Kinder said all these activities help students learn.

"We know what is behind the play, but they don't," she said. "They are just having fun."

Kinder said social interactions between preschoolers is key.

"It's amazing how much they learn from each other," she said.

Kinder started teaching preschool in the early 1990s and then took time off to stay at home with her children. When she returned to teaching in 2009, she said the number of children who had special needs had increased. Every child with special needs receives an individualized education plan which outlines learning goals and services they'll receive.

To qualify for state-funded preschool, a 3- or 4-year-old must have an identified disability or speech delay. Preschool also is open to 4-year-olds who meet state income requirements.

Kristin Froedge, director of special education for Elizabethtown Independent Schools, said she's seen a high prevalence of autism in students.

"It's a trend that we'll continue to see," she said.

Students who show signs of autism but don't have the diagnosis could be classified as developmentally delayed. A student's eligibility for this classification ends following their 9th birthday, according to the state department of education.

Last school year, 1.2 percent of students in the district's special education program were developmentally delayed.

Landon works with Marci Kauffeld, a speech pathologist with the district. She said speech is a work in progress. She teaches students how to move their mouth to make sounds for each letter.

"People take for granted being able to speak," she said.

Kinder said preschool overall is very important for children with special needs, and they see a lot of growth in students.

"The interventions we give them at an early age help them be successful as they get older," she said.

Need for more open-mindedness

Johnson has cards from her therapist she wants to give to strangers who stare at her and her son when he is having a public meltdown. The cards say, "My son has autism and he's working through it."

"Just because he looks normal, doesn't mean he's a bad kid and I'm a bad mother," she said.

Johnson said grocery shopping with Landon can be difficult because he is sensitive to all the stimuli in stores. She would like to see a local grocery store have a sensory-friendly day, so she could complete shopping.

Thomas said it can be easy to judge parents who have a child with autism.

"You shouldn't do that," she said. "You don't know what's going on at home."

Thomas said more open-mindedness could lend to more opportunities for children and adults with autism.

"Autism is everywhere and not isolated to one set of society," she said.

Foster echoed the other parents and said Christian, who recently earned a hard hat for completing three years of engineering course work and a certificate for Hour of Code from Hardin County Schools Early College and Career Center, is no different than anyone else.

"He's not a cripple," she said. "He can learn and be successful and go to college ? He'll just get there a little slower."