As parents of 4-year-old twins, D.J. and Jordyn Henkle have dealt with double the joys and frustrations all parents experience during early childhood.
From feedings to bedtimes to first steps and first words to potty training and preschool, there have been many challenges the family has met — and some they are still working on.
But each victory is even more special for the Seymour couple because both Griffin and Eli were diagnosed with autism in February 2015.
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“There are so many emotions you go through — fear, anxiety, even anger,” D.J. Henkle said. “You ask yourself a lot of questions, ‘How could this happen? Why did this happen to our children? What could we have done differently?’”
But the biggest and perhaps most frightening questions the couple had involved the future. They didn’t know how autism would affect their family and how their oldest daughter would adjust to having brothers with special needs.
What they have learned so far in their journey is that they are not alone.
“Sometimes, you can definitely feel alone,” Jordyn Henkle said. “But we have been blessed with so many people who support our boys and our entire family and those who understand the journey we are on.”
According to a recent report from Seymour Community School Corp., there are 66 students in the district K-12 who have been identified with autism and an additional eight in preschool. And that number continues to increase, said Mika Ahlbrand, director of special education.
In 2014, 59 students in K-12 and three in preschool were identified as having autism spectrum disorder.
Working with Unlocking the Spectrum, a new agency in Seymour offering support and resources to children with autism and their families, the Henkles say they are seeing major improvements and are much more optimistic about the future.
Located at 322 Dupont Drive in Seymour, Unlocking the Spectrum opened last summer. The center uses applied behavior analysis therapy to bring about meaningful and positive change so children with autism can succeed and function in society.
The center works closely with Christopher and Associates Evaluation and Counseling, which is able to diagnose autism and refer families for therapy. The center also works with families to secure insurance coverage to help pay for the costs of therapy services.
Unlocking the Spectrum has been offering home-based therapy services in the area since 2010, said Melissa Chevalier, director of business development. But having a physical center gives parents a different option and allows children with autism to learn how to interact with their peers.
Inside the center, there is a large area, painted in bright colors, where children work on arts and crafts and have structured play. There also are mats and swings for physical therapy, an area for reading time and a “classroom” for academic lessons.
The agency also offers school-based and community-based therapy programs to help children adapt to different environments. Services are available to older children with autism, too.
A public open house for Unlocking the Spectrum is being planned in April for Autism Awareness Month for families to visit the center and learn more about its services and resources.
Currently, the center is working with 14 clients, said Daniel Thomas, program manager.
Not all autism “looks” the same, and it can cause different behaviors in children. Also, some children display more severe levels of the disorder.
“The signs we noticed were a lack of verbal communication,” D.J. Henkle said. “Our boys didn’t respond when they were talked to or their name was called. They showed many repetitive movements, such as jumping, rocking back and forth and arm flapping. And eye contact was minimal.”
Griffin and Eli started attending therapy at Unlocking the Spectrum in September 2015. The agency has centers in Indianapolis, Bloomington and Terre Haute.
The Henkles had heard about the agency through some friends who have an autistic child.
Clients of Unlocking the Spectrum receive one-on-one instruction with a therapist to improve social and language skills, along with physical and motor skills. By working in these areas and finding ways for children to communicate better, there can be much improvements made, Chevalier said.
“Since starting at Unlocking the Spectrum, we have seen changes in our boys’ ability to adapt to different social environments, an increase in communication skills, as well as positive behavior while learning to interact with others,” Jordyn Henkle said. “The therapists work so hard with our boys and have really become a part of our family.”
With the twins being nonverbal, communication is the biggest frustration, the Henkles said.
But it goes both ways, with Eli and Griffin becoming just as frustrated as their parents because they can’t communicate what they want or how they are feeling.
“They can’t tell us they are hungry or thirsty or don’t feel well,” Jordyn Henkle said. “But with the help of their teachers and therapists, they are beginning to use techniques to help them communicate more effectively.”
Oftentimes for a child with autism, it’s easier to communicate in visual ways. Telling them to do something won’t register, but showing them will.
“We primarily focus on communication and behaviors because they often present with a lot of problematic behaviors,” Chevalier said. “So when you give them the communications skills, you’ll see a natural decrease in behavior problems.”
Children with autism also are deficient in social skills and can struggle with daily living and independent skills, Chevalier said.
“People will say kids with autism can’t learn things, and really, ABA therapy helps them learn all of the things anybody else can do, but we break it down into much smaller steps to teach them,” she said. “It’s not that they can’t learn to tie their shoes or they can’t learn to brush their teeth on their own. It’s just you’re probably going to have to teach them in a different way than you would teach a typical kid.”
The Henkles compare having a child on the autism spectrum to running a marathon every day. And that’s why, they say, it takes support on many different levels, from each other, to friends and family, therapists and teachers.
“It’s mentally and physically draining,” D.J. Henkle said.
Besides daily sessions at Unlocking the Spectrum, the boys also attend developmental preschool at Seymour-Jackson Elementary School.
Chevalier said ABA therapy is best when used in combination with other supports and when you take a team approach.
Since D.J. and Jordyn Henkle both have careers in education, they have worked with students with autism spectrum disorder before. But no two kids with autism are the same, they said.
“Autism is such a broad spectrum disorder, and now as parents, we truly see that as even our twins are different in how they behave, learn and handle different situations,” Jordyn Henkle said.
The Henkles agree it’s important to bring to light the subject of autism because it can be difficult for people to understand.
“Most people have probably heard of autism, but to say it is widely understood, probably not,” D.J. Henkle said. “There has been and continues to be a lot of research done and information shared, which is working to change that and raise the level of awareness of autism.”
Unlocking the Spectrum
322 Dupont Drive, Suite C, in Seymour
812-569-4884 or 855-INFO-UTS
unlockingthespectrum.com or Unlocking the Spectrum on Facebook