Editor’s note: This is the second in a three-part series.
Ryan Steiner was trying to figure out his place in the world. It wasn’t going well.
He had just avoided prison time and recently enrolled in college, but things weren’t working out the way he hoped. He was having a hard time making friends, but he desperately wanted one.
Finally, his wish came true. Ryan made a friend who wanted to spend time with him. They hit it off immediately and went everywhere together. When his friend dropped out of school, Ryan dropped out too. Together, they lived in their own friendship bubble and learned about the world.
Ryan was 21 when they started experimenting with drugs. They first tried meth, but Ryan didn’t like it. Then they tried heroin, and Ryan immediately became addicted. He used every day, which gave him an opportunity, without inhibitions, to be himself in his new friend group made up of other addicts.
“The drug world was a lot more accepting of weirdness,” he said. “And I felt accepted in a world that I had not really ever felt accepted in. I was going to become the best junkie that I can be, because that’s what I know how to do.”
Heroin made him feel carefree, but it also gave him more time inside his own head. It was a place he was familiar with from his time sitting in institutions with nothing else to do.
He soon realized heroin wasn’t an escape. It was a sedative, just like the doctors gave him.
“It wasn’t any different,” Ryan said. “It didn’t feel any different than the institution. I was sedating myself.”
By the time he was 25, Ryan had a deep-seated addiction and found himself homeless, sleeping on benches at night and inside a friend’s closet during the day. He was scared. He wanted help, but it was confusing trying to figure out how to find that help.
It was his grandmother who finally intervened and got him into a rehab facility.
“I realized that I wasn’t good,” Ryan said. “And I didn’t want that. I wanted to be able to help me. I decided that I might be better suited for a different life trajectory.”
Before going on a run, Ryan Steiner cleans out Kala’s G Tube bag in the kitchen as their cat Scuz watches on April 6. Ryan wears reflective sunglasses and ear protection when he runs to help protect his sensory limits.
His first few years of withdrawal were difficult, both physically and mentally. But through rational thinking, Ryan today feels secure in his sobriety.
“My brain is hardwired to logic,” he said. “And to me, it’s not logical to go there again, because I have overcome it. It was hard, but I don’t feel that hole at all now. It was another world, another existence, another time.”
“Food, on the other hand, calls to me. That is an addiction,” Ryan said.
At that time, he weighed over 700 pounds. But the decision to get clean jolted him to start thinking about getting healthy, too. After all, it was something under his control to do.
“It wasn’t what changed my life, but it mattered along the way,” Ryan said.
‘I WAS TIRED OF LIVING A NIGHTMARE’
The string of positive choices led Ryan to head back to college, but this time with a focus. He wanted to figure himself out. Why did his brain work differently than other people he knew? Naturally, he gravitated toward psychology.
“I felt like I was tired of living a nightmare,” he said. “This time, I was going to figure out what was wrong with me, why it was wrong with me, and how come nobody else could figure it out.”
Things began to click when Ryan took his first psychology classes. He began to understand why certain noises or smells or touching triggered him; why he struggled with making friends; why he had a hard time expressing his emotions.
Ryan discovered he had autism. It had never occurred to him, and the revelation was life-changing.
“It was awakening and freeing to know how to help myself and to finally be able to breathe, because I had spent most of my life in a really tight-clenched state of panic,” he said. “It was freeing and terrifying at the same time, because I knew what the outside world had to offer.”
But Ryan kept his discovery to himself. He was scared to tell anyone, and he wanted to learn as much about autism as he could to become an expert on it.
Ryan kisses Kala’s foot as he wakes her up from a nap on April 22.
But more about his diagnosis would soon come to light. When his grandma passed away, she left a briefcase with files and charts inside for Ryan. As he pored over the information, he soon discovered his family had always known he was autistic. They just didn’t want him to know.
“I think that they didn’t tell me because they wanted to protect me from a stereotype that they thought was wrong,” he said. “They didn’t want to limit me more than life was already limiting me. But what they didn’t realize is that it just hurt me.”
Ryan made a conscious decision to accept what had happened. After all, he liked the person it created.
MEETING AMANDA
The first time Amanda saw Ryan, he was crossing the road carrying a pizza.
She noticed he was wearing shorts and there was extra skin on his legs from the weight he’d lost. She could tell he was on a weight loss journey. So was she, and Amanda wanted to meet him.
By that time, Ryan weighed about 280 pounds. He was 32 and had lost over 400 pounds since he started his healthier lifestyle.
In a twist of fate, the two again crossed paths that same night at a bar in Terre Haute. They introduced themselves, and both were instantly smitten.
“It was clear we both could tell that the other one had lost a ton of weight,” Amanda said. “And so we had that in common and talked about that. Because you just understand each other from a whole different perspective.”
Amanda introduced Ryan to running, and it quickly became their special activity. They bonded on their runs after classes or work.
PHOTOS: Running with Kala
Ryan Steiner runs as he pushes his daughter Kala in her chariot, while his wife and Kala’s mom Amanda rides her bike alongside them on the Nickel Plate trail on April 22.
Due to being on a slew of medications growing up and stress-eating, Ryan weighed over 600 pounds when he turned 18, the age he is in this photo.
17-year-old Ryan, right, with his younger brothers, after Ryan got out of jail and spent a large part of his childhood in institutions and juvenile detention facilities.
A chart Ryan made about running with Kala and all the things that came from it and led to it hangs in a room in their Peru home on Aug. 18.
Ryan Steiner does pull ups as he works out in his home on April 6. Steiner has lost over 500 pounds.
Ryan lifts a weighted bag over his head as he works out on April 6. The amount of weight in the bag equals Kala’s weight. One day Ryan hopes to run a race where he carries her on his shoulders.
While Kala naps on April 13, Ryan paces through the living room and the kitchen as the family cat Scuz walks alongside him. Pacing is a way for Ryan to self-soothe and relax.
In between packing to travel for a race, Ryan refills Kala’s G Tube bag with formula at their Peru home on April 29.
Ryan leaves visual reminders like notes and a row of bottles and cups to remind himself to stay hydrated, to help keep him on track, like on April 29.
Ryan wakes Kala from a nap to ask her if she’s ready to go for a run on April 13.
Ryan Steiner preps Kala’s chariot with a rain cover and blankets on a wet and chilly spring day run on the Nickel Plate trail on April 13. Kelly Lafferty Gerber | Kokomo Tribune
Amanda consoles Kala while Ryan works on putting together her racing wheelchair before the start of a race in Peru on July 23.
Ryan makes faces as he plays with his daughter Kala before the start of a 5K in Peru on July 23.
Ryan Steiner takes a selfie with his daugther Kala at the end of a run on the Nickel Plate trail on July 7.
Ryan and Kala hang out together near the finish line as they cheer on the other finishers of the Emilie Hobbs Memorial Scholarship 5K in Peru on July 23.
Ryan Steiner loads up Kala’s racing wheelchair into the back of the van as he prepares to travel to a race on April 29.
Ryan reaches his hand out to Kala as he shows her that her chariot is ready and they are going to go on a run on April 22.
Ryan and Kala run on the Nickel Plate trail together on April 22.
Ryan checks on his daughter Kala as they go for a run on the Nickel Plate trail on April 22.
Ryan Steiner blows bubbles as his 6-year-old daughter Kala eyes them suspiciously. Blowing bubbles was part of Kala’s weekly online music therapy class on April 13.
A photo collage of Ryan and Amanda hangs on a wall in their Peru home. They met in 2014 and Amanda introduced Ryan to running. He proposed to her on their favorite trail.
Kala’s scrapbook from her birth and first few months includes photos and many hospital visitor stickers. Kala spent the first four months of her life in a hospital.
One of the pages in Kala’s scrapbook from her birth includes her tiny foot prints. Kala, born at 23 weeks, weighed 1 pound 5 ounces.
Kala was born at 1 pound, 5 ounces and the doctors gave her a 3% chance of survival.
Ryan, Amanda and baby Kala, who was born at 23 weeks and spent the first four months of her life in the hospital. Provided Photo
Before going on a run, Ryan Steiner cleans out Kala’s G Tube bag in the kitchen as their cat Scuz watches on April 6. Ryan wears reflective sunglasses and ear protection when he runs to help protect his sensory limits.
Ryan kisses Kala’s foot as he wakes her up from a nap on April 22.
Ryan changes out Kala’s G Tube in her stomach on April 29. Kala’s G Tube needs to be changed about every two months. She has been G Tube fed since birth.
Amanda hugs Kala as she and Ryan talk in the living room on May 11.
Amanda, Kala and Ryan check out their newly-planted garden on May 11.
Ryan massages Kala’s foot to try to calm her down as she cries on May 11. When Kala has a meltdown she likes physical contact to help calm her down.
Ryan gives Kala hugs and kisses as they hang out at home on July 7.
Ryan and Kala touch foreheads as they take a break during online school on April 6.
Kala and Ryan play in the living room on April 6. Ryan became a stay-at-home dad after Kala was born due to her health issues.
Ryan helps his 6-year-old daughter stand in an effort to help strengthen and stretch her muscles on April 6. Kala has cerebral palsy and is unable to stand or walk without assistance.
Ryan uses Kala’s iPad as motivation for her to do certain exercises that will help strengthen her muscles.
Ryan and Kala participate in Kala’s virtual music therapy session on April 13.
Ryan Steiner rocks out to songs in Kala’s online music therapy to try to get her engaged in watching it on April 13.
Ryan and Kala’s medals from their races hang in their home on April 6. Since they’ve started running together in 2020, they’ve run 19 races.
Ryan packs for an upcoming out-of-town race as Kala does her online school.
Ryan and Kala sit on the sidewalk outside their home and relax before going inside after a daily run along the Nickel Plate trail in Peru on April 22.
Ryan holds up two shirt options and asks Kala to choose which one she wants to wear
Ryan hugs Kala to help console her as she calms down after having a meltdown on April 29. Ryan and Kala both have autism, and Kala who has nonspeaking autism, uses her emotions as one way to communicate with her parents.
Kala clings to Ryan as she cries inside a tent Ryan set up in the yard on May 11. It was Kala’s first time in that new tent and being in a new place scared her.
Ryan hold Kala as they bounce on an exercise ball. They both like motion, which they discovered helps them both manage their autism.
Amanda, Kala and Ryan walk through the midway of the Circus City Festival on July 19.
Kala watches as Ryan cleans and resizes her wheelchair on July 19. Kala was playing a carnival episode on her iPad because Ryan told her they’d be going to the Circus City Festival in Peru later that day
Ryan gives Kala a kiss on the head as they sit in the midway of the Circus City Festival in Peru on July 19. Ryan likes to wear ear protection and sunglasses to help manage his sensory limits.
Ryan Steiner, left, chats with other racers after crossing the finish line of the Emilie Hobbs Memorial Scholarship 5K in Peru on July 23. Ryan pushing Kala in her pink and green chariot in races usually brings on many questions from other runners or spectators
Ryan and Kala run the Emilie Hobbs Memorial Scholarship 5K at Rock Hollow Golf Course in Peru on July 23. They’ve run 19 races together since they started running together in 2020.
The trees bloom around them as Ryan pushes Kala on the Nickel Plate trail on one of their daily runs on a spring day, April 29.
Ryan helps Kala manuever down the Nickel Plate trail on her gait trainer on May 11. Kala has cerebral palsy, and is unable to stand and walk on her own.
Ryan pushes Kala through Rock Hollow Golf Course on July 23 during the Emilie Hobbs Memorial Scholarship 5K in Peru on July 23.
Using her iPad as motivation, Ryan cheers for Kala as she sits up on her knees, one of the exercises she needs to do to help combat her contracting muscles on April 6.
Ryan works with Kala in her gait trainer to help increase her mobility on July 7, while their cat Enoki watches. Kelly Lafferty Gerber | Kokomo Tribune
Ryan puts Kala's leg braces on to help relax and stretch her muscles on July 7. Kala has cerebral palsy and the braces help her contracted muscles. Kelly Lafferty Gerber | Kokomo Tribune
Ryan helps Kala stand with her braces on July 7. Kala has cerebral palsy and the braces help stretch and support her muscles and increase her mobility. Kelly Lafferty Gerber | Kokomo Tribune
Kala gets excited as Ryan tells her they are going on a race soon and works on packing up her racing wheelchair, called the ‘chariot,’ on April 29.
Ryan cleans out Kala’s G Tube on April 22. The G Tube delivers nutrients straight to Kala’s stomach.
Ryan writes notes to help organize his thoughts and what he wants to put out there in the world about himself. Kelly Lafferty Gerber | Kokomo Tribune
Ryan's comfort device is his sonic screwdriver, modeled from the Dr. Who show. Kelly Lafferty Gerber | Kokomo Tribune
Ryan leaves reminders around the house for himself to do things like drink water. Kelly Lafferty Gerber | Kokomo Tribune
Kala scoots her way into the sunroom where Ryan welcomes her with open arms on April 6. Kelly Lafferty Gerber | Kokomo Tribune
Ryan cleans Kala's G Tube on April 6. Kelly Lafferty Gerber | Kokomo Tribune
Ryan and Kala spend time outside after a run on April 22. Kelly Lafferty Gerber | Kokomo Tribune
Ryan has Kala help with her G Tube on April 29. Kelly Lafferty Gerber | Kokomo Tribune
Ryan and Kala hang out at home on April 29. Kelly Lafferty Gerber | Kokomo Tribune
Ryan carries Kala inside on April 29. Kelly Lafferty Gerber | Kokomo Tribune
Ryan, Kala and Amanda sit in a new tent to try to get Kala used to it on May 11. Kelly Lafferty Gerber | Kokomo Tribune
Ryan winds the cord of Kala's G Tube before heading out on a run on May 11. Kelly Lafferty Gerber | Kokomo Tribune
That connection led Ryan to share his painful past. Amanda was shocked as he told her about the hospitals, the tests and all the mental-health diagnoses he’d had as a child.
“I just questioned a whole lot, like, how can he be this person before me and have experienced all of these things?” Amanda said. “No human being should have to go through all the traumatic experiences that he went through.”
Even so, Ryan couldn’t bring himself to admit he was autistic, even though Amanda was a music therapist and worked with people who have autism. He was too afraid she’d change her mind about him.
He tried to avoid having meltdowns when they were together, because he would sometimes hit his head, yell and sweat. He didn’t want Amanda to see that.
One day, Ryan was running late for work and his belt got stuck. He was overcome with emotion and immediately felt upset. He started to meltdown and screamed to Amanda that he was autistic.
A photo collage of Ryan and Amanda hangs on a wall in their Peru home. They met in 2014 and Amanda introduced Ryan to running. He proposed to her on their favorite trail.
She said she already knew, and Amanda helped him put his belt on.
“All the pieces kind of fit together with it,” Amanda said. “I was like, ‘We got this, we can deal with this. We can face the things ahead of us.’”
In 2014, Ryan proposed to Amanda on their favorite running trail. But soon, they would face one of the hardest moments either had experienced.
‘SAVE MY KID’
Ryan and Amanda were expecting a baby.
They had just found out it was a girl. The ultrasounds showed a healthy baby, and Amanda was also in good health.
It was 2015, and the couple had been married for a year. Ryan was just one month away from graduating college and had already applied to grad school. Life was looking good for the family.
But then, when Amanda was 23 weeks pregnant, her water broke. They had no time to drive to Amanda’s obstetrician in Indianapolis, so they rushed to the hospital in Terre Haute.
“I was so terrified that she was going to die,” Amanda said. “I was just a sobbing, emotional mess.”
Amanda underwent an ultrasound, but they didn’t see a baby in the scan. They told Amanda that she must be mistaken. That she wasn’t pregnant.
“I was like, ‘You’re not understanding. It doesn’t look like I’m pregnant because she’s here. She’s in my birth canal,’” Amanda said. “Then that was the moment where everybody stepped into action.”
Kala was born at 1 pound, 5 ounces and the doctors gave her a 3% chance of survival.
Amanda gave birth to Kala, who weighed just one pound, five ounces. The doctor said the baby’s brain was damaged and had just a 3% chance of living. And if she did live, Kala had a 98% chance of being in a vegetative state, unable to move and unable to recognize her parents.
Doctors told Amanda and Ryan to seriously consider if they wanted to continue the extravagant measures to keep Kala alive.
“I said, ‘I have spent my entire adult life working with folks who have the diagnoses that you’re talking about,’” Amanda said. “‘So, either you go in there, and you try and save my kid, or we’ll find somebody who will try because we will love her no matter what. No matter what, we want her. So please, do what you have to do to save our child.’”
Kala later was transferred to Riley Hospital for Children in Indianapolis, where she stayed for four months undergoing procedures, surgeries and tests. Day by day, she defied the odds and continued to grow stronger. Amanda and Ryan never left her hospital room, except to sleep at the Ronald McDonald House across the street.
Finally, they were cleared to bring Kala home, and they left the hospital trained on how to use Kala’s heart monitor, apnea machine, oxygen, feeding pump and tube, along with other machines Kala depended on for her survival.
When they got home, the magnitude of care that Kala required sunk in. At the hospital, they had nurses and doctors to rely on. At home, it was just them.
“Every single beep was like, ‘Oh, is this the time that it’s gonna happen? She’s gonna die and we’re gonna be responsible for saving her,’” Amanda said. “I was scared that we were going to totally mess it up.”
The first month was stressful. They sat with her around the clock. Kala’s care became their life.
They awoke at 3 a.m. as they tried to get her to sleep. They panicked if one of her monitors started beeping. They made the trek to Indianapolis a few times every week for follow-up appointments.
Ryan, Amanda and baby Kala, who was born at 23 weeks and spent the first four months of her life in the hospital. Provided Photo
In those first few months, it took both of them to care for her, so neither Amanda nor Ryan worked. On top of the mental, emotional and physical stress, they were also financially stressed.
Slowly, the list of things they had to do to keep Kala alive grew smaller, and as she grew, she became less fragile. Kala had reached a point where it only took one of them to manage her care. They decided Ryan would stay at home and Amanda would go back to work as a music therapist.
The adjustment to becoming a stay-at-home dad was difficult for Ryan. Kala cried all the time. She wouldn’t let him put her down. She craved physical contact while Ryan never liked touching and shied away from it.
And the things Ryan liked to do to cope with the extra physical contact, like pace or bounce on an aerobic ball, he had to do while he held her. He was exhausted.
“I was feeling broken as a stay-at-home parent,” Ryan said. “I really felt like I was going to implode. I love her so much and I wanted her to be okay, but as much as I don’t want to be touched, she needs to be touched in that same amount.”
The stress was taking a toll. While Kala had been in the neonatal intensive care unit, Ryan stopped watching what he ate and gave up running and exercise. That continued after they came home. Ryan gained weight and eventually became almost unable to lift her and hold her and rock her. He knew something had to change.
“I tried to give myself grace in that every decision is an opportunity to make a right decision,” Ryan said. “And sometimes the right decision for me is the wrong decision for my body and running.”
But he remembered how he felt when he exercised. It made him happy, clear-headed and shook out all the sensory overload that built up throughout the day.
It was time to start running again. But this time with Kala.
Ryan massages Kala’s foot to try to calm her down as she cries on May 11. When Kala has a meltdown she likes physical contact to help calm her down.
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