It's Hard to Imagine a More Challenging Beginning.
Or a More Promising Future.
Juana didn't meet the son she gave birth to until he was ten days old.
It was the summer of 2017. She was five months pregnant. When the weather turned extremely hot, it aggravated her asthma.
“The air quality was bad,” Juana (pronounced JAAN-uh) says. “I kept going back and forth to the hospital saying I couldn't breathe.”
Once in a hospital room, Juana went into cardiac arrest. To save both Juana and her baby, doctors placed her into a medically induced coma and delivered Terrance via C-section at just 26 weeks.
“He was a micro preemie,” Juana says. “He was in the NICU for three months.”
A few weeks after Terrance came home to his mom and older sister, a public health nurse noticed he was behind on some milestones. She recommended Early Supports services from Northwest Center Kids.
“I knew of Northwest Center because I have a cousin who has Down syndrome and he worked with them,” Juana says. “But I didn't know anything going into this about what occupational therapy was or what Terrance needed.”
The Northwest Center Kids Early Supports (Kids ES) team quickly put her at ease.
“They came to my home,” she says. “We did an initial consultation with Melinda [Bourgette, a family resources coordinator]. Then the occupational therapist and the physical therapist assessed Terrance individually, and he qualified for weekly visits.”
The family-centered, home-based approach worked well for Juana and Terrance.
“They make it very easy,” she says. “There was a speech therapist, a nutritionist and an occupational therapist to make sure he was eating, and a physical therapist for him to learn how to sit up, then stand, and then walk.”
She liked that the team individualized strategies for Terrance “instead of lumping him in a big group,” Juana says. “They just said, “'Okay, we’ll take it step by step, try a couple things to see if he likes it. We’ll see where he's moving forward and nurture that.'”
The team was also able to provide items for the family like a high chair so Terrance, who had spent his first weeks using a feeding tube, could practice sitting and feeding himself; and orthotics to help him walk, decorated with airplanes and fire trucks.
As Terrance progressed, his services changed to work toward the family’s new goals and focus. “He started eating regularly, so we didn't need the occupational therapy anymore,” Juana says. “He started walking and running normally, so we didn’t need the orthotics anymore.”
New Challenges, Steadfast Support
Speech therapy continued, and things were going well. But then COVID-19 brought new challenges.
“After having the heart attack, my immune system wasn't so great,” Juana says. “My asthma still wasn't under control. I was worried about catching Coronavirus.”
To keep families safe, the Early Supports program quickly pivoted to teletherapy. Like most people at the time, Juana had never heard of Zoom, so the team supported her as she navigated the new system, then came up with creative ways to connect in a safe, socially distanced way.
“Our first Zoom meeting had the occupational therapist, physical therapist, speech therapist, and Melinda so we could do our yearly review,” Juana remembers. “They said, ‘If you need anything, just let us know, and we'll be able to drop it off.’”
And they were true to their word.
“I needed help with everything, basically, during the pandemic,” says Juana. “When I needed a stroller, Melinda said, ‘Of course,’ and she brought me the stroller we use to this day. It was a brand-new stroller! If I needed diapers, she was right there. And then she would bring me extra things. She would say, ‘Hey, I brought some wipes and I brought some masks.’ Toothpaste and toothbrush, diaper cream, clothing and shoes for him, so I wouldn't have to go out and get those things.”
Then, in April 2020, a new worry: Terrance, now two-and-a-half, had stopped talking and had become more withdrawn. The Kids ES team referred Terrance to Seattle Children’s Hospital for a virtual evaluation. He was diagnosed with Autism Spectrum Disorder (ASD).
The first thing the Kids ES team did was make sure Juana was okay. (“They said, ‘How are you feeling? Do you need more support?’” she says.) Then they once again adjusted their services to address Terrance’s new needs.
They reassured Juana: “’Now we know, and now we can move forward,’ they said.”
But the stress began to take its toll. With Terrance approaching 3 years old, Juana needed to prepare to transfer him to a pre-K program. (Early Supports services are for children from birth to age 3, which is a critical time in a child’s development.) Juana was working with her team to plan for Terrance’s transition to a new program, but the paperwork was overwhelming—especially because she had no printer or fax machine, and normal resources like the library were closed in the pandemic.
“I had to register him for SSI [Social Security benefits],” she remembers. “I had to register him for school. I needed to mail certain things. I needed to copy certain things, do paperwork, and they wanted me to fax it over.”
Once again, her family resources coordinator was there to provide equitable services and support.
“Melinda was like, ‘Let’s pull up those files on Zoom, and we can get them filled out, and I can come over and have you sign them, and then I can send them out for you.’ That was why I was able to register him for SSI and why I was able to register him for school.”
Then Terrance began hurting himself.
“He was scratching himself—his legs, his stomach, his arms,” Juana says. “It was starting to worry me a lot; I didn't want him to use that as some kind of coping mechanism. It was leaving a ton of open wounds and scars.”
Juana was so overwhelmed that when she tried to ask her team for suggestions, she burst into tears. "It wasn't just over him scratching himself. It was about the pandemic. It was about the Black Lives Matter marches—I have a Black son. I was just so scared of life in general. There were so many things to be worried about at that time, and then him being diagnosed with autism and scratching himself. I just broke down.”
Ready for the Future
Northwest Center Kids Early Supports responded with new strategies and even more support—for both mother and son. Weighted blankets helped Terrance feel more secure. Juana set up a daily schedule for Terrance, similar to one he would follow when he starts school, so he’d get used to a new routine. She was skeptical, “But it worked!” she says. Because Juana liked singing to Terrance, they encouraged her to sing to help calm him. “They suggested all these songs I already know,” Juana says. “I hadn’t even thought of that. That has actually been the most helpful by far.”
The team made sure to check on Juana, too. “Melinda would send me things to my phone like a happy birthday GIF. She would let me know that everybody's thinking about me.”
At the holidays, Kids ES came through for the family again. When Juana was unable to buy gifts or find other assistance, “I called up Melinda a week and a half before Christmas,” she says. “She literally showed up with a shopping cart full of gifts for both of my kids.”
Today, Terrance attends classes at a school where the staff includes autism specialists. Juana says that moving on from Northwest Center services made her sad, “But it's a happy sad, you know?” she says. “I wouldn't have been able to get him to this point without those services. I was so fortunate to have these services, especially during a pandemic. I’m extremely grateful.”
Even more important, “Now I'm confident moving to the next stage,” she says, “and I know that Terrance is more confident in himself. Everything that we've done with Northwest Center, I've been included. And it wasn't even about Terrance having a disability; it was about him as an individual. In the end, they were able to give me tools so I can run the household better and take care of Terrance a lot better, especially with autism.
“I understand that he will be in therapy for a long time,” Juana says, “but it’s just his journey. He's the sweetest, funniest little kid. I just want him to live a happy life.”
King County’s Best Starts for Kids (BSK) levy, which is up for voter renewal on August 3, funds two important Northwest Center programs:
IMPACT provides consultation and professional development trainings to spread NWC’s mission and vision of inclusion to all of King County, with the ultimate goal of changing the landscape of early learning and childcare across the county to fully support children of all abilities.
Our Early Supports team, thanks to BSK funding, was able to meet our families’ needs throughout the pandemic by pivoting to a telehealth model and delivering needed resources directly to families. Funding from BSK also helped Early Supports launch equity initiatives including language access and racial equity projects to make materials and services accessible to more families.
Since King County voters passed the BSK levy in 2015, more than $368 million has been distributed to hundreds of other programs. These include:
Funded through a property tax, BSK was designed to help children realize their potential to be happy, healthy, safe, and thriving. The levy “Invests Early” by funding programs to support pregnant parents and children prenatal through five years old, and then “Sustains the Gain” through grants that support children, youth and young adults ages 5 through 24.
If BSK is not renewed on the August 3 ballot, funding is set to expire on December 31, 2021.
Bridging Generations: With Northwest Center Early Intervention and the Seattle Developmental Bridge Program, both Grandparent and Grandchild get the Support they Need
It’s challenging for any parent to seek help for a child with special needs. It was even harder for Sandra, whose deep distrust of programs for kids with disabilities went back decades.
When Sandra was a child in a Seattle special needs program, she felt marginalized both for her cognitive difficulties and for being Black. Teachers would speak too quickly or use terms she did not know, making her feel like her understanding didn’t matter to them as much as that of her white classmates.
When Sandra had her first child, the cycle continued: her daughter was also placed in special education and experienced the same frustrations.
By the time Sandra recognized that Destiny, the granddaughter she was raising, needed support with her cognition and communication, she was hesitant to once again put her trust in a system that had let her and her family down—especially as a single parent with a low income who had already raised multiple children. But she overcame her initial fears so that Destiny, who was born drug-exposed, could begin Early Supports (ES) therapy with Northwest Center Kids.
We may have to stay socially distanced, but Northwest Center services can’t stop—kids with disabilities still need therapy to reach their milestones, preschoolers need interaction with classmates and teachers, adults with disabilities need to keep their work skills sharp, and the businesses we partner with need essential services. Here are some ways the Northwest Center community has been rising to the challenge of COVID-19.
Northwest Center Kids
Learning in Circles: How Virtual Education Keeps Kids Connected
From Heart Surgery to Hospital-to-Home Therapy, Early Supports to Early Learning, Northwest Center Supports Jackson Every Step of the Way
The moment the family walked through their front door, Northwest Center was there to help: the family signed up for Hospital-to-Home, Northwest Center’s Early Supports for Infants and Toddlers (ESIT) program that supports families when a baby comes home from a long hospital stay.
“Immediately upon leaving the hospital, we started doing motor and feeding therapy with our speech-language pathologist Natalie Miller,” says Jackson’s dad Nathan. (Miller, who is also a Hospital-to-Home Clinical Supervisor, remains Jackson’s therapist to this day.)
“It would have been unbelievably difficult to not have that support,” Kamille says. “It’s so overwhelming to be hooking your child up to a machine to be fed. It was really important to have someone dedicated to infant feeding. Natalie had worked with kids with tubes, she'd done swallow studies before. It was not her first rodeo and it was definitely ours.”
“Without that support, I think we would have clogged up our doctor’s phone lines,” Nathan says. “Or we might have pushed Jackson a little bit too hard on trying oral feeding if we hadn't had experts helping us understand his limitations.”
“Your first year feeding and taking care of a child is vital to their wellbeing for the rest of their life,” Kamille says. “The most important part of our day was getting Jackson fed. Natalie would talk to us, give a second opinion of ‘That’s normal or not normal’ or, ‘Yes, you should talk to a doctor about that’ or, ‘Here’s some referrals and resources; let me connect you with this person that might give you some more guidance.’ It was a support system.”
Part of the Family
Jackson, who turns 3 in November, has since reached some major milestones.
“We’ve been with Early Supports services from the get-go. On top of that, Jackson started going to Northwest Center Kids Early Learning at around 6 months old,” Nathan says. “We knew we couldn’t go to just any daycare because of Jackson’s feeding tube.”
“At Chinook, they support his Early Supports therapy,” Nathan says. “They’ve always really supported any changes we needed to make. They never complained, always asked if there was more they could be doing.”
Still Connected, Still Thriving
The family is grateful for the consistent support from Early Supports and Early Learning, especially their long relationship with their speech-language pathologist.
“I consider Natalie a wonderful resource and a close friend,” says Kamille. “I think of her as somebody who I trust with my child's care. Northwest Center was able to facilitate me having support and Nathan having support, and his grandparents having support, by coming into our homes, and that was key to his success.”
Because of COVID-19, in-home visits are suspended for now, but Jackson continues to expand his vocabulary thanks to weekly telehealth therapy. These days, he is practicing saying words and phrases typical for a two-year-old like "I want juice" and "I love you."
“My hopes for Jackson’s future are just like any other parent,” Kamille says.
“I want him to have a normal childhood with normal ups and downs,” says Nathan.
“I want him to be loved by everyone, because he is absolutely worthy of it, as any child is,” says Kamille. “It’s so important to us that Northwest Center’s work continues—for Jackson to have good care and other kids to have an inclusive place to go.”
At just four months old, Noemie was having trouble getting enough nutrition. Her diagnosis was complex: tongue-tie (ankyloglossia), a condition that restricts the tongue's range of motion; acid reflux; food allergies; and sensory processing disorder.
Noemie’s pediatrician referred her to a special clinic for children who have trouble getting enough nutrition. As the months passed, she saw other specialists in gastroenterology and nutrition, and began outpatient feeding therapy. And yet, Noemie made little progress.
Finally, the pediatrician referred Noemie’s family to Northwest Center Early Supports for Infants and Toddlers’ (ESIT) feeding therapy program, and they began working with occupational therapist Molly Nolan-Jones. The in-home visits were valuable, but after a few months, Nolan-Jones felt that Noemie’s diagnosis was not complete.
"At that point, Molly told us what turned out to be some of the most important words: ‘I feel like something else is wrong; you need to take her back to the gastroenterologist,” says Noemie’s mom Nichole.
“Molly became more than a feeding therapist,” Nichole continues. “She became a family advocate. She spoke with doctors on our family's behalf, and she was instrumental in helping the doctors find a proper diagnosis: eosinophilic gastrointestinal disease.”
Eosinophilic gastrointestinal disease (EGID) makes it painful and difficult to swallow and digest food. Because Noemie’s EGID diagnosis was delayed, she had developed a pediatric feeding disorder. So Nolan-Jones continued to work with the family.
“I provided education about how to present food, how to engage in sensory play throughout her day, sensory approaches to food, and mealtime routines at their home,” says Nolan-Jones.
When Noemie turned 2, Early Supports transitioned her occupational therapy services from her home to the Early Learning classrooms at Northwest Center Kids at Greenwood.
"Noemie, her mom, and I would join the classroom at lunchtime,” says Nolan-Jones. “Our goal was for Noemie to spend time around other kids who were eating and enjoying food. This was motivating for Noemie, and she would eat more food during these meals.”
This past fall, Noemie officially transitioned to Early Learning as a student.
“Words can’t even explain how thankful I am to Molly and everyone at Northwest Center,” Nichole says. “It made a big difference in Noemie’s life and saved her from further complications. I couldn’t be more grateful.”
Learn about EGID at Apfed (American Partnership for Eosinophilic Disorders). Visit Northwest Center Early Supports for Infants and Toddlers to learn more about services for children from birth to age 3.
Kam grabs a slice of “watermelon” from the play food on his family’s coffee table. He pretends to eat it, then offers some to Ricky, his dad.
It’s more than a happy family moment, says Susannah Major, a Speech Language Pathologist with Northwest Center Kids. “This is huge,” she enthuses. “Pretend play is such a prerequisite for language.”
The program that Northwest Center Early Supports for Infants and Toddlers (ESIT) has pioneered in collaboration with the University of Washington Neonatal Intensive Care Unit (UW NICU) is not only making a huge impact on families whose babies are beginning life in the UW NICU; it’s also making one statewide.
When Tiago and Aviana were born two months prematurely, doctors told their parents that they would need to adjust expectations for the twins’ development. Developmental milestones including walking and speaking would likely develop on a different timeline than that of full term babies. Sitting for the average baby is usually around six to nine months. For Tiago and Aviana, it was much later.
By Katia, Northwest Center Mom
Northwest Center Early Supports for Infants and Toddlers (ESIT) has helped me understand Alex. Everybody is so on top of things, helping me and helping Alex learn to eat. Before, I would chase after him if he left the table. Now I talk to him to engage him at the table so that he stays and eats more. Early Supports has made changes happen.
Northwest Center is different from other programs I work with because there are several resources in your network like a nutritionist and feeding team, so I don’t have to wait for referrals to different places. We have meetings with his childcare, Early Head Start, Alex’s doctor and his nutritionist, which means that we are all on the same page, so there is connection and support. We are all trying to find a way together for Alex to work on the things that are hard for him right now.
Northwest Center is a 501(c)(3) Nonprofit Organization. We envision a day when all people have the same opportunity to learn, work and enjoy a fulfilling life. From birth to retirement, we support people with disabilities.
This story was originally published as part of Northwest Center's 50th anniversary project: 50 Stories Worth Sharing
When they learned their daughter Helena would be born with Down syndrome, Lisa and Joe Wasikowski knew they’d face some difficult choices. The one easy choice was to work with Northwest Center Early Supports for Infants and Toddlers (ESIT).
“Helena was in the NICU, and a social worker handed me a business card with Northwest Center info on it,” Lisa says. “By the time Helena came home from the hospital, we'd already met with our new team in our home and had formed a plan. She started therapy at three weeks old.”
Northwest Center is passionate about equal rights, anti-ableism, and full inclusion for people with disabilities. Thank you for reading.