Kuba, who has a rare genetic disorder, shares a playful moment with his mother, Cydney. — Images are human-created, AI-aided.
The first time Kindering called to ask how they could help her newborn son Jakub, Cydney Knapp was still processing.
"My son doesn't have special needs," she remembered telling the caller before hanging up.
Jakub, nicknamed Kuba, had just been diagnosed with a condition so rare doctors didn't have a name for it, only a string of numbers and letters that pointed to where one of his genes duplicated. Workers in the newborn intensive care unit, where Kuba stayed for two weeks, notified Kindering, an organisation that specialises in early care for children with disabilities, about the child.
He will write his own story, the doctors told Knapp, giving her no indication of what to expect. The symptoms became clearer as Kuba grew: airway problems and difficulty feeding after birth, weak muscle tone, seizures and severe cognitive delay.
Knapp had serious doubts about how an infant could benefit from therapy. But by the time Kuba was three months old, a feeding specialist at the hospital persuaded Knapp to give Kindering a shot.
She now credits the organisation, and in particular, the patient work of his therapists, as a big reason behind why the jubilant eight-year-old can walk.
Intervening early is one of the core missions of the Kindering Center, one of 13 non-profits that benefit from reader donations to The Seattle Times Fund For Those In Need and the largest provider of therapy for developmentally delayed children age three and younger in Seattle, the United States.
Every step counts
Kindering relies on donations to make up the difference in roughly US$2.3 (RM9.49mil) in uncompensated costs yearly.
Like Kuba, many of the patients have been receiving services all their lives, through programmes that include group classes, therapy sessions at home and in-clinic therapy that serves students up to 11 years old. The organisation says 52% of the children Kindering serves don’t need special education services by the time they're three years old.
Kuba doesn't fall into that 52%.
He can't communicate yet with words, and is shaky in his stride. In many ways, his mother and other caregivers are still learning about the nuances of his condition.
But much of the work that Kindering occupational therapist Aaron Wong-Weinrieb does to teach Kuba social, emotional and physical skills is in that gray area. Many of the kids on Wong-Weinrieb's caseload don't have underlying diagnoses.
During an appointment with Kuba last month, Wong-Weinrieb was prepped with everything he needed to keep Kuba's interest. As of late, that means using mirrors and hats.
Kuba, wearing an oversized red Mario cap, and Knapp walked into the organisation's Bellevue location, where Wong-Weinrieb appeared near reception with a vertical mirror. Holding the mirror in front of him, he walked backward to guide Kuba to the therapy room, crouching so that the mirror would meet Kuba at eye level.
Wong-Weinrieb (right) has seen encouraging progress in Kuba.
Early help, lasting impact
For all of the five years he's known Kuba, Wong-Weinrieb has used a teaching technique that involves mirroring a child's actions, and adding one more step. Years ago, therapy started with Wong-Weinrieb and Kuba smacking the floor with their hands.
When a smiling Kuba walked into the room - a play area with colorful mats and a swinging bench hanging from the ceiling - the boy made a beeline for a small table in the corner. He shook a plastic piggy bank, which released plastic coins on the table and floor.
Then he took his cap off and put it back on while looking at his therapist.
That's Kuba's way of inviting Wong-Weinrieb to do the same. But the latest goal for Kuba is communicating, either verbally or through an iPad. Wong-Weinrieb positioned a mirror on the table to get Kuba's attention, and placed an iPad next to it. Then he tapped an icon that played the word "on" aloud, and waited for Kuba to tap or repeat verbally.
No dice. This has been a difficult area, his mom says. A few years ago, Kuba knew how to say about 10 words, but a seizure medication wiped them from memory. They had to start from scratch again.
Kuba then made his way around the room, and his mother and Wong-Weinrieb followed close behind.
When Kuba took his cap off, the two took parts of a plastic food storage container — makeshift hats — and copied the movement. When Kuba babbled, they babbled. When he clapped, they clapped.
The sessions are a way for Knapp and Wong-Weinrieb to check in with each other. Over the years, Knapp says, it's helped her feel less alone, and helped her gain confidence since that first time Kindering called eight years ago.
"The therapists - they've been therapists for me as well. Aaron especially — he asks me, how are you doing? What are you doing to take care of yourself?" she said. "I've had therapists — they make you feel bad if you don't practice everything at home. But there's no judgment here."
To reinforce the therapy, Wong-Weinrieb and other therapists try to incorporate other members of the family, such as siblings, into sessions.
Near the end of the appointment, Wong-Weinrieb and Kuba arrived at the base of a small set of stairs under a window. Kuba hesitated. Confidence in walking and moving is another area they work on in therapy. Wong-Weinrieb took a suction toy and attached it to the window to encourage the climb.
Kuba slowly ascended, Wong-Weinrieb right beside him. – The Seattle Times/Tribune News Service
