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 Downs syndrome and he worked with them,” Juana says. “My aunt completely recommended Northwest Center as well. 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.”
One aspect she liked best was 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 for Juana.
“After having the heart attack, my immune system wasn't so great,” she says. “My asthma still wasn't under control. I was worried about catching Coronavirus. Plus I was on this heavy medication that made me gain weight, so I wasn't able to do much.”
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 [family resources coordinator] 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 that 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 years old, 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.
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.”
And, when the holidays approached, 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 is 3 and attends pre-K classes at a school where the staff includes autism specialists. Juana says that moving on from Northwest Center services made her sad, “But they made it 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.”
It’s an average work day at Bean Box for Alex. At a long row of tables, he packs samples of fragrant coffee into boxes to be mailed out to subscribers. He chats with employees who stop by to drop off supplies. He joins coworkers in the break area at lunch.
The fact that this day is so average is what makes it so important, says Alex’s mom Larisa. Because until very recently, she wasn’t sure it would happen at all.
Alex, who was diagnosed with Autism as child, has spent much of his life excluded from social activity with peers, his mom says. “Alex can’t really read social cues, so it’s tough for him.”
Work has posed more challenges. When Alex was working in a mail room as part of a school-to-work transition program, he became overwhelmed, walked away, and got lost.
“Then they put a full-time assistant with him,” Larisa remembers. “But they said, ‘We’re not sure he’s going to be in any kind of paid position ever.’ We didn’t have much hope.”
After graduation in 2020, Alex found a warehouse job through Northwest Center Employment Services, but he had trouble adjusting to an unpredictable work schedule.
The one bright spot in Alex’s week was playing Special Olympics sports. Then COVID-19 struck.
“When everything got closed down, he was crushed for months,” Larisa says. “He was not able to connect with anybody.”
Then, in late summer 2020, Northwest Center Employment Services got a call from Ben Adler, director of operations for Seattle-based coffee subscription company Bean Box. Adler was interested in hiring people with disabilities because his mother has taught special education for 20 years. “She always talked about people in terms of what they’re capable of doing,” he says. “Instead of focusing on disability, she focused on ability.”
“I like this job,” Alex says. “I get to talk to other people. I really enjoy that I get to work at Bean Box.”
“It’s a big thing for Alex to be engaged,” Larisa continues. “At Bean Box, people are nice to him and he understands what he’s supposed to do. They treat him like a valued team member.”
That’s because Alex, and every other client hired through Northwest Center Employment Services, is a valued team member, says Adler. “We’re not just providing people with work; we’re able to get things done more efficiently because they’re really good at the things that they’re doing every day,” he says.
And while Alex still has job coaches as he works to answer questions and help him stay on task, these days he needs much less support.
“I am really, really hopeful that eventually Alex will be able to go in by himself, start the task, and finish the shift,” says Larisa. “Even a year ago, we thought that would never happen. But now I see it happening.”
'What if, rather than seeing a person’s disabilities, we focused on the abilities that every person brings?'
Spend 10 minutes immersed in an inclusive world, and love every minute. “All Abilities,” a short film about Northwest Center created by Seattle Pacific University (SPU) and Untamed Pictures, is part of the SPU film series Faith & Co. featuring businesses that are about more than just “doing business.”
The film captures the benefits of inclusion at Northwest Center, from more efficient workplaces to the joy of befriending people who see the world in a different way. You’ll meet a family whose little boy has been part of NWC Kids since he was born; a man whose long job search led him to success at Puget Sound Laundry Services; and a woman with Down syndrome who’s the perfect employee at one of our Early Learning centers.
Please take a few minutes to watch “All Abilities.” We believe it is time well spent.
This article was written by NWC Communications intern and Integrated Facility Services employee Trevor Pacelli. Trevor is a self-advocate who has written several books about his experiences with autism.
On December 18, 2007, the UN General Assembly named April 2 “World Autism Awareness Day,” which, every year since then, has kicked off World Autism Awareness Month. Days like this are necessary because, by the National Autistic Society’s estimate, approximately six million people wrongly think autism has a potential cure. Despite how far we’ve come in learning about it compared to 30 years ago, there is still a long way to go for autism to be commonly accepted as another way of living, rather than a sign of lesser intelligence.
One common fact about autism I personally would like others to know is that what may be a minor inconvenience to you can distress an autistic person past their ability to cope. In my experience, that inconvenience has been conversations. I’m often so caught up inside my own thoughts that, when someone suddenly approaches me for a conversation, I’m freaking out deep down; I cannot think of stuff to say other than single-syllable responses. I really want others to understand that about me, and to understand that others similar to me have a struggle much like mine.
In the next five years, I hope to see more knowledge of the spectrum publicly applied into everyday life so people with autism can be accepted as equals, with their unique needs also met. Northwest Center is working to accomplish that very thing, as we were founded on principles of securing education for children with disabilities so they can live fulfilling lives and have successful careers.
Northwest Center is passionate about equal rights, anti-ableism, and full inclusion for people with disabilities. Thank you for reading.