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 organization that specializes 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 3 months old, a feeding specialist at the hospital persuaded Knapp to give Kindering a shot.
She now credits the organization, and in particular, the patient work of his therapists, as a big reason behind why the jubilant 8-year-old can walk.
Intervening early is one of the core missions of the Kindering Center, one of 13 nonprofits 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 3 and younger in the Seattle area. An experienced cadre of therapists, working at the center’s Bellevue, Bothell, Redmond and Renton locations, provides programs that meet about half the need for services on the east side of King County.
The organization handles the bill for any services not covered by insurance, and unlike many other providers, it accepts Medicaid, which typically only reimburses about 40% of what the organization charges.
Kindering relies on donations to make up the difference in roughly $2.3 million in uncompensated costs yearly. The organization is also planning an expansion of its campuses to increase its capacity about 47%. The number of children receiving services increases by more than 11% annually, said Lisa Greenwald, the center’s CEO, and there are waitlists for some programs — though never for its birth-to-3 services.
“We are a part of the special education system,” said Greenwald.
Like Kuba, many of the patients have been receiving services all their lives, through programs that include group classes, therapy sessions at home and in-clinic therapy that serves students up to 11 years old. The organization says 52% of the children Kindering serves don’t need special education services by the time they’re 3 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.
So he designs the therapy sessions around what he does know: about the child, about their symptoms, and about their family. The commitment to know families at Kindering is what has made a difference for other kids, too.
Bijal Desai, whose son Kiaan was born with Angelman’s disorder — which causes cognitive and physical delays — said a Kindering speech therapist accompanied her family to a clinic in Colorado that specializes in the disorder in order to learn more about the boy’s needs.
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 organization’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.
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.
During the play, Knapp noticed Kuba grinding his teeth, and reached to massage his jaw.
“He’s been grinding his teeth a lot huh?” Wong-Weinrieb asked, holding a storage container on his head.
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.
Correction: This story has been updated to correct the spelling of Jakub and Kiaan’s names.