As a single mother raising two teenagers with autism, Ashley Lagazo is still struggling to help her kids cope with the fear and anxiety that plague them, even a year after they drove desperately away from the Lahaina wildfire.

Her son, 16, is nonverbal and still in diapers, but he can’t sleep at night, hits out at people and has other behavioral problems exacerbated by the family’s several moves from one housing location to another. Her daughter, 18, can speak, but she became a lot quieter. “She’s scared and very depressed,” Lagazo said.

Because her daughter better understands things visually and finds some relief in drawing or coloring pictures, Lagazo said a workbook with simple language and pictures explaining the impacts of the fire helped her make some sense of the chaos of Aug. 8, 2023. Her daughter had questions like why did the fire happen and who started it, Lagazo said. It also provided pictures she could point to that identified her reactions, and space for her to draw her own pictures describing her feelings and write about her own experience.

The workbook was created in October by Dr. Maya Matheis, a clinical psychologist with the Center on Disability Studies at the University of Hawaii, to help people with autism and other developmental disabilities better understand and cope with the disaster.

“This population in general tends to be forgotten or not thought of,” said Matheis, who has experience working with people who often have trouble expressing their feelings.

Matheis said, “I think we tend to shy away from talking about difficult things with this population, talking about death, talking about disaster. We don’t want to upset them, but they notice what’s going on, they see the stress around them, they hear things, they could see and smell the smoke even if they weren’t in Lahaina.”

“Sometimes the confusion about what is happening can increase the fear” when they don’t really know what’s happening, Matheis said. But the book can be used by all children to process their traumatic experience.

Matheis said the workbook can be downloaded online and is also available in print with 600 copies distributed so far. Based on practices known to be effective in treating post-­traumatic stress disorder, the workbook uses “social stories” to explain complex situations, depicting in words and pictures the wildfire’s smoke and flames, people fleeing and other impacts. It encourages people to “talk story” about their personal experience to bring deeper understanding and reduce stress, she said.

Dr. Ryan Lee, medical director of the Developmental Disabilities Division, said, “I think what this workbook is doing is allowing them to begin to heal, especially when they don’t have the words or verbal ability to discuss their feelings about the trauma they’ve experienced.”

“We’ve seen a reduction in some of the symptoms of post-traumatic stress disorder … the anxiety, the frustration they show in isolation,” according to data collected from talking to families and staff at adult day centers, said Lee, a pediatric neurologist.

Their interaction with others has improved, and they’ve increased participation in activities, cry less often and don’t recall events that disturbed them as frequently, Lee said.

The division serves almost 60 people with intellectual and developmental disabilities on Maui, and works with adult day care facilities and community agencies, including Arc of Maui, Easterseals Hawaii and Ka Lima o Maui.

Travis Urayanza, a 38-year-old man with cerebral palsy, used the workbook a lot in the months immediately after the fire at the Arc of Maui County day center in Wailuku, where some of his friends didn’t realize the scope of the destruction.

“It was very helpful. It helped us understand what happened and how people were feeling after the fire,” he said, mentioning the pictures made it easy to use.

Urayanza was living with five other people in an Arc group home in Napili when the fire erupted in Lahaina. They lost access to the news and other lines of communication with the electrical power outage, and the food had started to spoil. They didn’t know what was going on, but when they were evacuated to an emergency shelter, they saw the terrible damage — “We were able to see what everybody else was seeing.”

“We got emotional about it. We were in shock,” Urayanza said. Even months later he still couldn’t believe what he saw.

“I’ve had anxiety, certain times that triggered my sadness — those are feelings I deal with. Sometimes I start to cry. I was able to sleep well, but it did affect my mind, what I saw (in person) and what I saw on the news every day,” Urayanza said.

They had to get used to living in an emergency shelter for two months, but it was well supported by the Arc staff, which provided a strong social network and regular therapy. He said everyone at the Arc day center is feeling better since they’ve returned to their routines.

“It took a lot of work for us to get back to where all of us were, and it’s still going to be a lot of work,” said Urayanza, who is looking forward to volunteering again for Habitat for Humanity.

Lee and his division staff have frequently flown to Maui to work with families and case managers to check on how their clients are coping. There’s been much confusion and frustration dealing with the red tape involved with receiving housing and services from government agencies like the Federal Emergency Management Agency. The staff follows up to make sure people are getting their needs met, especially those with physical disabilities who use wheelchairs, feeding tubes and other medical equipment.

But Lee said his division is short-staffed and needs far more resources to help the disabled, particularly tools to aid communication and additional therapists. It takes more time, patience and understanding to counsel “someone who does not express their grief or their trauma in what we would call a typical human response,” he said.

Lagazo said August, the anniversary of the wildfire, has been a “really emotional, hard month” for her family, especially with all the recent brushfires and bomb scares in the area.

“I’m just so happy I can mentally hold myself together. Dr. Maya and the DDD (Developmental Disabilities Division) office really, truly helped me with this transition,” she said. “They helped me make my plans, and with what to do during certain times, and put things into perspective for me.”

With Matheis counseling her once a week for months, “The most important part was understanding my emotions and the trauma that I went through; I think we want validation of the reality. Honestly, I think it saved my life. She allowed me to put my thoughts and worries and anxieties in perspective. What she taught me I’m teaching my daughter, but in a more kiddish way — she has these severe emotions.”

To download the toolkit provided by the Center on Disability Studies, visit coe.hawaii.edu/cds/maui-wildfire-response.

To request free printed copies of the workbook or resource cards, contact Dr. Maya Matheis at mmatheis@hawaii.edu.