A Boy Named Kerwin: Part III

Last of three-part series originally published in the Lexington Herald-Leader, December 16, 2008.

The Real Work Begins

Story and photos by Andy Olsen

LEXINGTON, KENTUCKY – On his first day in Lexington, Kerwin Haake, 6, fidgeted in a hard bleacher seat and watched history in the making.

As the University of Kentucky’s football team sealed its victory over top-ranked Louisiana State in triple overtime on Oct. 13, 2007, the roar of 70,000 fans rose to meet a blast of fireworks above Commonwealth Stadium.

But Kerwin could hardly hear a thing.

Kerwin shoots for a basket during his first day at the Kentucky School for the Deaf in Danville on Nov. 8, 2007.

Mike and Rebecca Haake of Nicholasville had brought their newly adopted son home from Haiti the afternoon before – just in time for the game – kicking off what Rebecca would call “the best week of my life.”

Kerwin may have been deaf and needed help just to stand up, but anything involving a ball seemed to fascinate him. When the boy signed, it was about almost nothing else. And Mike taught him about UK sports at every opportunity.

If only he could play sports. Or talk about them. These were not impossible dreams, but only months – or years – of doctor appointments could begin to give them shape.

Conventional adoption wisdom says that parents should take it slowly with their new child and allow time to adjust. But the Haakes already had put life on hold for months in Haiti. They put plans into action before they had even unpacked.

“When you bring your kid home, you’re supposed to stay home to acclimate for a month. Most kids don’t even meet their grandparents for two weeks,” Rebecca said. “That hasn’t been possible with us.”

For Kerwin, the first week home was a blur of new experiences: Wal-Mart, fishing, McDonald’s, sleeping alone in a bedroom, petting a cat.

Mike and Rebecca were afraid of Kerwin falling behind in life. When they met him in Haiti, he knew about a dozen words in sign language, far behind where a deaf 6-year-old in America should be. He had attended school briefly, but stopped going because, as his caretakers at the orphanage reported, “he did not like it.”

In November, Kerwin started at the Kentucky School for the Deaf in Danville. Within days, he brought home new signs Mike and Rebecca did not recognize. Sometimes Kerwin tried a word and gave up when they did not understand. They began weekly sign classes to help keep up with the boy’s exploding vocabulary.

“My goal is just to know a little more than him,” Mike said.

At first, Rebecca viewed sign language as a necessary tool for Kerwin, but held out hope that someday he might not need it. A speech therapist, she set her sights on getting her son to talk.

At the same time, they began getting treatment for Kerwin’s legs, which cerebral palsy had left bent inward like a pretzel. There were regular visits with audiologists, therapists, and education experts.

In padded rooms for hearing tests, Kerwin was connected to machines that beeped and squawked and spat out numbers. Women with kind faces came to the Haake home, scribbling serious notes as they watched Kerwin play with blocks.

Kerwin was admitted to the Shriners Hospital for Children for treatment on his legs. He got a bright green walker, which allowed him to run like the wind. His parents learned to manipulate and stretch his legs each night before bed, exercises that would keep them from worsening and, perhaps, even straighten them a bit.

Despite the joy of having their new son home, Mike and Rebecca felt tension they had never known before – even in Haiti. There were Kerwin-related errands nearly every night. They were still slogging through government paperwork to finalize the adoption.

Kerwin made noises constantly. And his moods swung as he adjusted to all the changes. He would sometimes cry when he needed to go to the bathroom instead of just asking to go.

At breakfast one morning as they were rushing off to see an audiologist, Mike sat at the table with head in hand, waiting for 20 minutes as Kerwin scrutinized each piece of Life cereal before sneaking it into his mouth.

Rebecca looked tired. She announced that today, she was going to try not to have a nervous breakdown.

“When you have a kid, you’re more focused on the child than you are your marriage, and a lot of things that you used to have time for, you don’t make time for anymore,” Rebecca said. “Babies are one thing because you have to spend every minute with your baby, but it’s kind of the same with a special-needs kid.”

Though Rebecca’s parents, Rick and Nena Sweigard, were thrilled to have their first grandchild home, they had been concerned from the day she and Mike announced they were going to adopt Kerwin. That day was an emotional one for many in Lexington. It was the day that Comair Flight 5191 crashed at Bluegrass Airport, killing 49 people. The Sweigards had just returned from a funeral when the family met and the Haakes broke the news.

“We were shocked,” Nena said. “When she told us about his disabilities, our first thought was, well, you always want to protect your children. I was like, ‘Do you know what you’re getting into?’”

A couple of miracles
Six days after Thanksgiving 2007, Kerwin sat with his parents in a cramped medical office of the Cincinnati Children’s Hospital in Crestview Hills. Brown hearing aids were wedged in his ears, turned off.

Kerwin tried out his new hearing aids for the first time at the Cincinnati Children’s Hospital facility in Crestview Hills on Nov. 28, 2007. With the help of an audiologist, Kerwin could hear sounds like speech, doorbells and a ringing phone.

He giggled and squeaked unintelligibly and pointed to a cartoon playing on a television on the wall. Tommy Evans, an audiologist with the hospital, clicked a mouse at a computer in the corner, and the hearing aids came alive.

Kerwin touched his ear and fell silent.

Before the hearing aid, Kerwin could hear only loud noises like the pop of a balloon or the slam of a door.

Now, he could faintly hear Rebecca talking to him.

The morning Kerwin got his hearing aids was a sort of watershed for the Haakes, when it seemed they were finally starting to get somewhere. He attended regular occupational and physical therapy sessions. Soon, he would begin speech therapy, forcing his mouth to make the sounds that could someday be combined into words.

Rebecca beamed with optimism. “If any kid’s going to learn to talk, it’s this kid. He’s got normal intelligence and his mom’s a speech therapist,” she said. “If any kid’s got a chance, it’s him.”

After the appointment, they ate lunch with Mike’s parents, Dennis and Diane Haake, at a Cracker Barrel. Rebecca lost at a board game that was sitting on the table and laughed when Kerwin did his best to spit out “bad.”

The group said goodbye on the way out of the restaurant, and Kerwin eked out a “bye bye.” A crowd of people around him cheered, as if they had seen a tiny miracle.

But it was not as big a miracle as the phone call that came a few days later.

Though Mike was teaching and Rebecca had started back to work part-time, co-pays and deductibles for Kerwin’s medical care were straining their resources. The doctor bills were more than $3,000, and the Haakes were still paying off the credit cards that sustained them for months in Haiti after their savings dried up.

At least, they were until a representative called from Shaohannah’s Hope, a Tennessee-based organization founded by Christian musician Steven Curtis Chapman to help parents finance adoptions.

They wanted to give the Haakes money. Not just a little money – $10,000.

Mike and Rebecca had applied to the group for help, but never expected more than the typical grant of around $3,000.

Stacy Vining, a spokeswoman for Shaohannah’s Hope, said that Kerwin’s dual disabilities “probably made their case.”
With the grant, they were able to pay off their adoption debts.

Running the bases
In Kerwin’s first six years, life in Haiti taught him this: Moms and dads do not want broken children like him, and such children belong in a spartan little orphanage.

In his seventh year, Mike and Rebecca showed Kerwin that wasn’t true.

The Haakes threw Kerwin a birthday party on Feb. 19 at a Pizza Hut in Nicholasville. He blew out candles on a cake shaped like a baseball, surrounded by friends with electronics in their ears, just like him.

In the spring, Kerwin started Miracle League baseball, hitting a home run during his first game and running the bases with his walker – laughing all the way. The family flew to Los Angeles over spring break. Kerwin rode a roller coaster at Disneyland, watched a filming of The Price Is Right, and downed half a hotdog at a Dodgers game.

But the Haakes wanted more. They settled into a constant tension between their hopes for Kerwin and reality. In everything from school to Kerwin’s legs, they saw a long road ahead.

Tests on Kerwin’s ears showed that even with hearing aids his hearing was not good enough to catch all the normal sounds of speech.

Rebecca was considering corrective surgery for his legs. But doctors at Shriners Hospital recommended a less extreme procedure where Botox injections into the calf cause muscles to relax and allow the legs to be set in casts and straightened.

On May 7, Kerwin rode a Power Wheels Jeep into surgery at Shriners Hospital – standard procedure there.

Less than 20 minutes after the anesthesia took hold, he was rolled out of the room wearing two bright red casts like candy canes on his legs. He would wear them for six weeks.

He hated them at first, pouting and crawling around instead of walking. He eventually adjusted, but Mike and Rebecca wondered if they had done the right thing.

At times, everything seemed like a guessing game, even Kerwin’s education. While he was excelling in deaf school, it was hard to accept that he was not speaking more after months of speech therapy.

“You expect that your kid should do awesome all the time, no matter what. He’s smart, why isn’t he just doing great?” Rebecca said. “Then you step back and you go, yeah, but he is. But every day you go, yeah, but I want him to do better.”

It was easy for them to overlook the progress Kerwin was making, easy to forget he had a near six-year developmental delay in communication that would not be made up overnight.

“I haven’t seen a whole lot of big gains, but then you stop and think and there’s something every week that he’s doing and he hasn’t done it previously,” Mike said.

Signing and praying
On a muggy Sunday morning in June, Mike, Rebecca and Kerwin walked into a hushed gymnasium at Anchor Baptist Church in Lexington, home to the Bluegrass Deaf Mission, or “deaf church,” as they called it. Worshipers sat in a few rows of folding chairs at the far end of the floor below them.

They took the elevator down. The door opened with a ding that bounced off the wood floor and walls, cutting the silence. But no one noticed.

The family had been coming to the service off and on for weeks. They figured it was good for Kerwin to be among a community of other hearing-impaired people. (They were not using the word deaf much anymore in reference to Kerwin, since he could indeed hear.)

And it was good for Mike and Rebecca, because their sign vocabulary had fallen behind Kerwin’s. “I have so much more to learn and nowhere to learn it,” Rebecca said.

They walked across the floor and greeted a few people before the service started. The pastor, Brian Cross, who is deaf himself, knelt down and talked with Kerwin, smiling at the boy who had become a darling of the church.

The congregation signed a few hymns to the hum of an air conditioner and occasional palm slaps.

Cross signed about Christ’s love for society’s outcasts. He paced on a creaky platform, each step thundering in the quietness. Kerwin sat attentively on Mike’s lap, mimicking the pastor’s gestures.

For the first time in his life, Kerwin was finding men to look up to who were like him. Cross was independent, witty and passionate. He could even talk.

Rebecca believed strongly that Kerwin would talk someday. Already, he was speaking simple words in context like mom, dad, up and down. But there was so much further to go.

In two weeks, Kerwin’s casts would come off. Already, his legs were straightening. And though the Haakes did not know it yet, they would film him running the bases at Miracle League on his own in just a few months. But there was so much further to go.

The family left church and drove out for lunch at a Mexican restaurant, a family tradition – back to the world of the hearing and away from this deaf world they were all just beginning to explore.

But at least they had started.

Standing on his own
In the 14 months since Kerwin first arrived in the United States, he has progressed so much that the months spent waiting in Haiti seem like a distant memory.

Since beginning treatment on his legs in May, Kerwin can now stand with his feet flat and his legs almost straight. He walks and runs independently, though with an awkward shuffle and often only in short spurts before falling.

Rebecca and Mike have had to adjust their expectations with Kerwin’s speech. Though he receives regular speech therapy at the Kentucky School for the Deaf, untrained listeners cannot hear much progress in the sounds Kerwin utters.

Doctors say it could take decades before he is conversant.

“I would still like for him to be able to read lips and to speak where others could understand him,” Rebecca said. “But if that doesn’t happen, I’m not going to go to ridiculous lengths to accomplish that.”

Still, Kerwin loves to practice talking, and his family says they are encouraged by his development.

As for Kerwin, he will face another major transition next year: becoming a big brother. Rebecca discovered in September that she is pregnant. She and Mike are expecting their second child in April.