By Maureen Gilmer, IU Health senior writer, email@example.com
Kala Steiner only has to hear her dad go “Vroom, vroom,” and she gets positively giddy.
Those words and that excitement mean it’s time for a run, and Kala is definitely here for that. The little girl who will turn 7 next month can’t use her legs to run, but her positive energy fuels her dad, Ryan, as they hit the trail behind their house.
Born at 23 weeks’ gestation in Terre Haute, Kala weighed just 1 pound, 5 ounces. Keeping her alive took everything the hospital had, and she was transferred to Riley Hospital for Children at about 1 month old. She would remain in the NICU for five months.
Kala suffered cerebral palsy as a result of her premature birth, which affects her ability to move. She also has autism, asthma and hydrocephalus, and she has a G-tube for nutrition.
But when Ryan puts his shoes on, she starts chattering because she knows it’s time to head outdoors.
HER CHARIOT AWAITS
“We fancy ourselves ultrarunners,” said Ryan, who pushes his daughter in an adaptive stroller that he calls her “chariot.”
Together, they’ve competed in two 50K races, as well as the Indy Mini Marathon, other half-marathons and lots of 5K runs.
“She’s just in her happy place when they run,” Kala’s mom, Amanda, said. “It’s her favorite thing to do.”
The Steiners, who now live in Peru, Indiana, don’t focus as much on Kala’s ability to walk or run as they do on helping her live her best life. The little girl, who sees several specialists at Riley, also receives regular therapies, including physical therapy.
In-person PT for her cerebral palsy, though, was rough, due to Kala’s autism and sensory issues. When COVID hit, Kala’s parents met with Riley physical therapist Sarah Gonzalez to talk about Kala’s need for a neurodivergent approach to therapy – in other words, therapy tailored to the way her brain works.
For the Steiners, that means inviting Gonzalez into their home every other week – virtually – to work with Kala and Ryan on skills to improve her mobility. The therapy takes place in the family’s basement gym, equipped with everything that might be available in an in-person therapy setting, and Gonzalez appearing via Zoom.
“I really wanted someone who would be flexible and learn to work with me,” Ryan said. “I knew Riley was where I could find someone who could help me help Kala.”
Gonzalez is that person.
“SHE GETS THE BIG PICTURE”
“Sarah has been the best of all of the therapists we’ve had because she understands Kala’s needs, but she also understands Ryan’s needs,” Amanda said.
Like his daughter, Ryan also has autism. He is a stay-at-home dad and is the go-to person for her therapies. Together, they require an individualized approach.
“Sarah has been incredibly patient with Ryan and his learning style and how to help him help Kala,” Amanda said. “It’s really been the best therapeutic experience because she gets that big picture.”
Previous attempts at in-person therapy typically resulted in Kala suffering a meltdown, becoming sick and refusing to leave her dad’s arms.
“It was very traumatic,” Ryan said.
The pandemic turned out to be a blessing in some ways for the family because virtual therapy became an option.
“Virtual works better for her,” Ryan said. “Sarah has me position Kala in different ways, and Kala lets me do it. She feels safe, and I feel supported well enough to put her in the proper positions. Really, therapy is where you learn how to do the things that you do at home – that’s where the progress happens.”
And she has made progress, both parents say, thanks to therapy being adapted to her.
LISTENING TO THEIR DAUGHTER
“She is so much happier now,” Amanda said, adding that her daughter is typically anxious around people she doesn’t know well and doesn’t respond well to them touching her. “I think she feels heard and seen. We finally listened to her.”
As a result, she is thriving. The couple has been able to slowly remove pieces of her gait trainer to where she is getting closer to maybe a walker, her dad said.
The ultimate goal is for her to stand and hopefully walk, at least with an assistive device, Gonzalez said, but for now, she works to give Kala a bigger variety of movements so she can adapt to different environments.
That might include crawling or scooting, pulling up to a kneeling position or standing.
Gonzalez acknowledges being a little nervous about how well virtual therapy would work, but she believed after evaluating Kala in person that the little girl would be a good candidate.
“Dad is such a good advocate for her,” Gonzalez said. “He knows what she needs, and he really wanted to try virtual. It has worked out wonderfully because he is dedicated and is able to apply the things in person that we talk about virtually.”
MEETING KALA’S NEEDS
Historically, Gonzalez said, neurodivergent people were expected to adapt their behavior and their communication to a neurotypical environment.
“But with this movement of neurodivergence acceptance and awareness, we’re trying to meet them where they are and help them be successful.”
A physical therapist for eight years, six of them at Riley, Gonzalez said the awareness of neurodivergence in patients has evolved and treatment has been adapted to that need.
“With this family in particular, I am so fortunate to have been able to work with them,” she said. “To be able to talk with dad and learn from him and learn from Kala has made a huge impact on my methods and my thought processes as a therapist. I hope I’ve had as much effect on her as she’s had on me.”
Kala’s parents seem to think so.
“We’re just always eternally grateful for Riley because not only are they providing her with good therapy services, but they saved her life over and over again. We wouldn’t have her without Riley,” Amanda said.
“When COVID happened, it was like the world finally was accommodated to neurodivergent people,” Ryan added. “I have thrived in this. Kala has thrived. There are a lot of sad stories that happened during COVID, but the world has become a different place for me and for my daughter.”