Seamus' Story

By Carreen Maloney for Northeast Community Center
For parents of young children, one of the most difficult aspects of dealing with the pandemic has been the challenge of putting it into perspective. Explaining why in-person schooling wasn’t safe anymore – and why sports and all other extracurricular activities had to be canceled – made for tough conversations. Days that used to be rich in stimuli and social interaction had suddenly become still and quiet. ...For some children with special needs, the public health crisis was practically impossible to comprehend. Northeast Portland parents Kim and Eoin Bastable recall their two daughters longing for their old routines, but for their nine-year-old middle child, Seamus, it was devastating to his development when school cancelled classes indefinitely following spring break in March 2020.

“As a family, we were already struggling with this isolation that we feel within our American culture having a child who is different, who is not communicating verbally,” Kim says.

The Bastables knew that finding daily enrichment for Seamus (pronounced SHAY-mus) was crucial for his quality of life. Both Kim and Eoin are highly knowledgeable when it comes to education. Eoin has a PhD in special education, and Kim has worked in the field of service learning. Desperate to help their son, Kim and Eoin spent a significant amount of time online looking for somewhere Seamus could go to get the interaction he needed.

“We were just searching for anything that would be in person,” Kim says, recalling how panic started to set in when every door seemed to be closed.

And so it was nothing short of a godsend when the Bastables learned the Northeast Community Center (NECC) had figured out a way to operate its kids’ programs safely. NECC welcomed Seamus into the facility five afternoons a week for the entire 2020/2021 school year, altering his pandemic-era world in a tangible, meaningful way. Before they discovered NECC, all Kim and Eoin could do was take Seamus for a walk to their neighbor’s house to play basketball. It wasn’t nearly enough.

“What we experienced here in our small pocket of the country is that NECC was the only one open for him,” Eoin says. “It was disappointing and disorienting, especially for kids with special needs. The school didn’t seem to have anything for us at all. We just knew he needed something in person. And that’s exactly what NECC provided during the pandemic. They never got scared off like other institutions. They had a commitment to the kids that no one else did.”

NECC staff put protocols in place to keep kids safe. They limited their programs to small groups of children. They conducted contact tracing, installed large hand sanitizing machines, and made certain children wore masks consistently. Activities offered at the center included floor hockey, soccer, basketball and board games.

The Bastables’ nine-year-old son, Seamus, has Angelman syndrome, a rare genetic disorder that affects the nervous system. Angelman’s is characterized by developmental delays, speech impairment, and difficulties with movement and balance. Social interaction and routine are crucial to Seamus. His parents struggled to find the words to help him comprehend why his life had suddenly changed so dramatically.

“We didn’t even really understand how to explain it to him,” Kim says. “And it continues to be a bit of a wild ride. For Seamus, his learning style is a long, slow approach. It takes a lot of repetition, a lot of visuals, and so much patience. We couldn’t even wrap our brains around it.”

The Bastables’ also have two daughters – Nuala, who is eleven years old, and seven-year-old Eve. “Our girls did okay, they could handle being on the internet for a couple of hours,” Eoin says. “But Seamus was lost. Even the library closed. It was profoundly difficult for him. He didn’t have any of those places anymore. He didn’t understand like our daughters did.”

Typically, Seamus is a joyful child. In fact, a happy demeanor is one of the signatures of Angelman syndrome. But the pandemic forced Seamus to face changes to his life that were unsettling and anxiety-provoking.

“He was experiencing confusion, sadness, and anxiety,” Kim says. “When Seamus gets anxious, his reaction is to bury himself on his devices, like many of us. When it was time to put the devices away, there would be this huge outburst. The devices and other things would get thrown at us. His emotional regulation was really off, and I think that was confusion and a lack of understanding of what’s going on.”

Kim and Eoin said the time and patience NECC staff devoted to helping Seamus was life-altering. Michael Fendall, the counselor who led Seamus’ program day to day, and Nohea Waiwai’ole, the center’s youth coordinator, spent the most time with him. Both employees communicated openly and frequently with the family and were always there to guide Seamus during his time at the center.

“I was just hopeful I was providing a safe, respectful environment for the kids to blow off some steam,” Michael says. Working with them also became Michael’s main activity outside the home during widespread lockdowns and business closures. “It got the kids out, but it got me out, too.”

Both Michael and Nohea said the role they played helping the community during the pandemic was a deeply gratifying experience they will always remember fondly.

“It’s added a lot of meaning to our lives and to the programs as well,” Nohea says. “What a difference it can make if you put in the effort to make someone feel comfortable and safe. We tried really hard to focus on social and emotional wellbeing because we know everybody’s going through a lot right now.”

The special attention and care paid to their young attendees paid off, she added. “When I first met Seamus at the camps, he didn’t talk that much. We didn’t know what his communication capabilities were.”

As Seamus grew more comfortable at the center, staff noticed he began to blossom and grow more confident about expressing himself.

While outlining the magnitude of what NECC has done to help his family, Eoin was so overcome with emotion he took a pause from the interview.

“It’s hard to explain how much their support meant. It was the consistency and knowing he was welcome there. He didn’t always make it through the day, but the staff was so supportive. They never treated him differently and he felt included. He started to pick up a lot of skills that he never would have learned being home all day. They started teaching him games that he came home and taught us as a family. If the day didn’t go great, they would welcome him back the next day like nothing happened.”