This Family’s Love Helped a Son Overcome a Rare Condition
They were told their son would never speak or move on his own. Together, his parents and sisters helped him overcome his disability in this story from our December 1993 magazine.
Soon after the birth of his son, Steven, Lindy Kunishima gathered his daughters, Trudi, 13, and Jennifer, 9, in the living room of their Honolulu home.
“I want to tell you a story,” the American-born descendant of Japanese samurai said. “One day a samurai warrior sat down with his three sons and took out an arrow. He asked each son to break it. All of them broke it easily. Then he took three arrows, all bound together, and placed them before his sons. ‘Now break these arrows,’ he said. None of them could do it.”
As he neared the end of his story, Lindy gazed steadily into his daughters’ eyes. “Then the samurai turned to his sons and said, ‘That is your lesson. If you three stick together, you will never be defeated.'”
As the only boy in Lindy and Geri Kunishima’s close-knit family, Steven occupied an honored place. His two sisters doted on him from the day he was born in September 1982.
When Steven reached 6 months, however, his mother grew concerned. Schoolteacher Geri Kunishima couldn’t understand why her son still woke up crying several times every night to be fed. His daytime behavior was also puzzling. Steven would stay wherever Geri put him, seldom moving or making a noise. “He’s not like the girls were at this age,” Geri told her pediatrician.
“You’re overanxious,” he said. “Steven is doing just fine. Little girls tend to develop faster.”
At 18 months, Steven still could not walk or talk, and early in 1984 Geri took her son to a neurologist. A CT scan revealed that the vermis, an area of the brain that transmits messages to and from the body’s muscles, had not developed.
This condition, called hypoplasia of the vermis, explained why Steven’s muscles remained soft and flaccid. It also explained why he woke up so often at night—his tongue muscles were too weak for him to swallow enough milk to satisfy his hunger.
“Mrs. Kunishima,” the neurologist said, “I’m afraid your son will never walk or talk, or do much of anything else that requires muscle control.”
Struggling to get a grip on herself, Geri asked how this would affect Steven’s intelligence. “He will be profoundly retarded,” the doctor replied, “uneducable for all but the simplest tasks. At some future time, you might consider putting him into an institution.”
Shattered by the diagnosis, she couldn’t eat or sleep for days. Late at night, Trudi and Jennifer could hear their mother’s muffled sobbing and the gentle words of their father, trying to console her.
Jennifer, now 11, was also struggling with her emotions. She was a top student and a natural athlete with a wide circle of friends. Although she loved Steven deeply, she couldn’t cope with her friends’ knowing she had a brother who was not perfect. So, around them, she avoided any mention of Steven.
Trudi was also a top student and an achiever. However, at 15, she had the wisdom of someone older than her years. She was more able to accept Steven’s handicap—and yet she wondered how disabled he really was. One day, trying to ease her mother’s sadness, Trudi challenged the doctor’s prognosis. “Mom,” she announced, “I just don’t believe what he said about Steven. Jen and I see a spark in his eyes. You can’t give up on him. He won’t have a chance if you do.”
A plan forms
Trudi’s words forced Geri to summon her fighting spirit. She called a family council around the kitchen table.
“I’ve thought about what Trudi said to me today,” Geri began. “When the two of you were little, your father and I read to you a lot. We felt it would stimulate your minds and help teach you language. I think we should do the same for Steven.”
“Yes!” Trudi agreed excitedly.
“We won’t miss a night,” Jennifer promised.
The four joined hands across the table and bowed their heads. “From this moment,” Geri said, “we pledge to do everything in our power to help Steven.”
The next evening, as Geri prepared dinner, Trudi unfolded a small futon on the white-tiled kitchen floor and propped her brother upright on cushions. She cradled his head in her arms because he couldn’t hold it up for long and, snuggling next to him, began to read from a children’s book.
Another reading followed the next night—and the next, until it became a half-hour ritual every dinnertime. Along with reading, Jennifer and Trudi asked questions and pointed out animals or people illustrated in the books. But week after week, Steven only kept staring blankly into space, seemingly lost in a dark, empty world. He’s not even looking at the pictures, Geri thought. Will we ever unlock what’s in this child?
Gradually, Geri felt despair winning again. One morning in the predawn stillness of their bedroom, she poured out her feelings to Lindy. “The girls are trying everything,” she said, “but nothing registers with Steven. I don’t even know whether the reading is helping or hurting.”
“We may never be sure,” Lindy conceded. “But in my heart, I know doing something is better than doing nothing.”
“Time for our reading, Steven,” Trudi announced, nestling with her brother on the kitchen floor. After three months, he had still shown no response. He seldom even moved. That evening, however, he suddenly wriggled away from the cushions.
“Look at Steven!” Trudi called to her mother. In stunned surprise, they watched as he dragged himself across the floor. Inching to the children’s books along the wall, he pawed at one.
“What’s he doing?” Trudi asked.
Unable to turn the pages with his fingers, Steven whacked through the book with his hands. When he came to a page filled with pictures of animals, he gazed at it for a long time. Then, just as quickly as it opened, Steven’s world shut down again.
The following night, the scene was repeated. As Jennifer prepared to read, her brother crawled to the same book and pawed it open to the same page. Speechless, the two sisters gave him a hug, laughing and crying at the same time.
“Steven’s got a memory!” Geri marveled.
By now, Geri was on a leave of absence from her job so she could devote more time to her son. As the months passed, Steven showed more and more response to the nightly reading. From her study of the subject, Geri learned that other parts of the brain can often compensate when one area is damaged. Maybe that’s happening with Steven, she thought.
Both Trudi and Jennifer played the piano, and now they propped Steven under the grand piano while they played. One day after practicing, Jennifer lifted Steven from his place under the piano. This time, he was uttering a new sound. “He’s humming the music he just heard!” Jennifer shouted to her parents. “Steven,” she said, “you understand music, don’t you?” The boy broke into a smile.
At the same time, the family also worked to build up his muscles. Lindy attended a massage school and learned how to knead his son’s arms and legs. Geri, Trudi and Jennifer dabbed peanut butter on the boy’s lips. By licking it off, he exercised his tongue and jaw. They also gave him gum to chew and feathers to blow. Slowly, flaccid muscles in Steven’s face began to strengthen.
A school for Steven
When Steven was 4 ½ years old, he still couldn’t speak words, but he could make “aaah” and “waaah” sounds. Also, with a walker, he could now stand and take slow, shuffling steps. Moreover, he displayed a surprising visual memory. After studying the picture on a 300-piece jigsaw puzzle, he could assemble the pieces in one sitting.
Still, Steven was rejected by every preschool his mother applied to. Finally she took him to Louise Bogart, then director of the L. Robert Allen Montessori School at Honolulu’s Chaminade University.
Bogart watched as Steven crawled on her office floor. He lifted his head, trying to speak to his mother. ‘Aaaah . . . aaaah,” he repeated again and again, gesturing insistently. Bogart saw the pain and frustration in his face. But she also saw something else: Steven was determined to make himself understood.
“Mrs. Kunishima,” Bogart said, “we would be happy to have Steven in our school.”
In the months that followed, the boy continued making slow progress. One morning, in his second year at Montessori, he was playing idly with blocks on a mat. Bogart stood off to the side, watching the teacher work with another child on numbers.
“What number comes next?” the teacher asked.
The child drew a blank.
“Twenty!” Steven blurted.
Bogart’s head swiveled. Steven had not only spoken clearly but also given the correct answer.
Bogart approached the teacher. “Did Steven ever work on this?” she asked.
“No,” the teacher answered. “We worked with him a lot on numbers one through 10, but we didn’t know he had learned any beyond 10.”
When Geri picked up Steven after school, Bogart told her what had happened. “This is just the beginning of what he’s capable of,” Bogart said.
Jennifer felt a knot in her stomach as her father drove her to her first high-school basketball game one night in February 1990. Steven, now 7, sat silently in the back seat, watching the passing traffic.
Jennifer’s love for her brother was as strong as ever, but she still tried to keep his disability a secret. And that was becoming more difficult. Two years before, Steven had learned to speak, and his speech revealed his problem. “Please, Dad,” Jennifer whispered before heading to the locker room, “try to keep Steven from yelling during the game.”
When the game started, Steven became caught up in the excitement. “Come on, Jennifer!” he shouted in his slow and halting speech. Jennifer cringed in embarrassment and refused to look at her brother. She knew she was letting him down; she was not being the strong third arrow. But she could not help herself.
At home, however, Jennifer lavished affection and attention on her brother. His motor skills remained poor, so Jennifer, Geri and Trudi worked hard at making his written scrawl legible. “I can do it,” Steven assured Jennifer one day. “Just give me time.”
For Steven, the biggest challenge of all was simply getting around. One typical morning, Geri heard a thud from the kitchen. “He’s fallen again,” Geri said, rushing to her son’s side.
By now, Steven had fallen so many times that his knees were crisscrossed with scars. Yet Steven never cried when he fell. He even developed a sense of humor about it. Once, wearing slippers when he tumbled, he turned to his parents, eyes dancing. “Now I know why they call these slippers,” he said.
“I really need to go to this camp,” Jennifer told her high school principal one day in March 1991. “It’s very important to me.”
Camp Paumalu, located 25 miles north of Honolulu, was held twice a year for four days to help students meet challenges, develop leadership skills and confront their fears and problems. Jennifer had begun to realize that a major obstacle was the torment she felt about mentioning Steven to her friends.
At the camp one afternoon, as she walked on the grounds talking with a boy from her high school, Jennifer felt her problem boiling to the surface, and words poured forth. “I have a brother,” she told the boy. “I was never mean to him, but in a sense I was. I never wanted to face the fact that he has a disability. I always wanted to pretend it would go away.” When Jennifer finally finished, she sensed the burden lifting.
On the last day of camp, each student wrote the fear or problem to be overcome on a pine board. Then the camper ceremonially broke the board with a chop of the hand or foot, symbolically breaking through the obstacle. On her board, Jennifer printed out her problem in large letters. Then she slammed her hand downward, but not until her fifth try was there a resounding crack as the wood splintered in two.
The next day, arriving home, Jennifer threw both arms around her mother. “I’m free, Mom,” she said. “I’m finally free.”
Jennifer’s acceptance of Steven was now total. That fall, at her first basketball game of the season, she again heard Steven’s loud voice cheering her on. Turning toward her brother, she waved to him eagerly. Now, her father thought, the three arrows are truly bound together.
For three years, beginning in 1990, Steven attended Holy Trinity School, a mainstream Catholic school. Learning still came hard, but Steven’s speech and writing had improved to normal, and his physical movement was close to normal. Now 11, he is working at grade-level for his age. He can run and jump, and—like Jennifer—he has also started playing basketball.
In 1992, Steven came to the attention of Lynne Waihee, wife of Hawaiian Governor John Waihee. Hawaii’s first lady had chaired a “Read to Me” program that encouraged people to read to children. Impressed by how much reading had helped Steven, she arranged for the Governor’s Council for Literacy to honor the Kunishimas.
In a reception at the governor’s mansion in December 1992, Geri introduced Steven, who told more than 200 area leaders of his struggles over the years. He received a standing ovation.
Last March, the Hawaiian chapter of the American Red Cross presented Lynne Waihee its 1993 Humanitarian Award. She asked Steven to write a dedication for her awards banquet program. For hours, Steven pondered what to say. Finally, he summed up what reading meant to him, and in so doing he spelled out the triumph of the Kunishima family. “Reading is important,” Steven wrote. “My family reads to me, and now I can read to myself.”