Families Of People With IDD Rebuild Frayed Ties As Pandemic Eases
PORTLAND, Maine — Celeste June Henriquez, a Portland artist, guided her 18-year-old daughter, Abigail Henriquez Peck, through the Portland Museum of Art last week until they reached the place where her two oil paintings, “Big House” and “Snow Coming,” hung from the walls.
Henriquez’s works portray bold abstract representations of arches and bridges that symbolize a long separation from her daughter and the difficulties that the COVID-19 pandemic has brought to her family.
Peck, who has autism, lived in New Hampshire in a residential center for adults with developmental disorders, until moving back to Maine last month. For nearly a year, as the pandemic raged and visitation was curtailed, she was separated from her family except for brief, one-hour visits last summer.
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“It made me nervous, and it made me feel sad. I felt like our family was really split,” Henriquez said. “She was locked out of all the things she wanted to do, but couldn’t do. She lost her routine, and she’s very much in need of a routine.”
Families of those with autism and intellectual disabilities have had their lives upended by the pandemic, and typically suffer more acutely than people who do not have these conditions, research shows.
In Maine, about 25,000 people — adults and children — likely have some form of autism, based on prevalence rates for the disorder published in a 2020 study by the Centers for Disease Control and Prevention.
“The impact of the pandemic has been massive on this population,” said Dr. Matthew Siegel, director of the developmental disorders program at Maine Behavioral Healthcare. “It has been a silent crisis that has not gotten a great deal of attention in media and government.”
Siegel said specialists who work in the field of developmental disorders are seeing a lot of regression in education and behavior during the pandemic that families and professionals had worked for months and years to improve.
“For many of those who are autistic, in order to function, they need education, they need to participate in the community, and they need a system of in-person supports, and those supports can be intensive,” Siegel said. “With the onset of the pandemic, those supports all just disappeared, and they disappeared overnight.”
Except for the one-hour visits last summer, Peck was separated from her family for nearly a year during the pandemic, as she lived in an institutional setting in Manchester, N.H. She moved back to Maine last month and reunited with family, including her mother and father, Robert Peck. Abigail Peck now lives in a small group home in Lewiston, and has unlimited visitation with family members.
Henriquez, 60, said the pandemic scrambled the family’s routines and ability to see Abigail. Before the pandemic, they would visit every weekend and plan activities, like swimming at the local YMCA, going out for ice cream, cooking together, doing crafts or reading.
But when the pandemic hit, the institution Peck was living in suffered from numerous COVID-19 outbreaks, Henriquez said, and all visitation was forbidden for months. Peck herself fell ill with COVID-19 last March. Fortunately, it was a mild case, and she recovered within two weeks.
When visitation finally resumed last summer, visits were limited to one hour per week, with families distanced across a table in an outdoor gazebo. The family improvised, bringing music along and playing it while they danced around the gazebo table, keeping 6 feet apart.
To help cope with the separation, Henriquez turned to her artwork, working on the two abstract paintings off and on for nine months before she felt they were complete. The titles, “Big House” and “Snow Coming,” are borrowed from phrases that her daughter frequently uses.
“Look, Abigail, that’s ‘Big House,'” Henriquez said during last week’s museum visit, pointing to the painting that featured arches and bridges depicted with splashes of blue, red and yellow. “Over here, that’s ‘Snow Coming.'”
Peck looked at the paintings briefly before moving on to another part of the museum. Like many people with autism, Peck is challenged by verbal communication. She usually speaks just a few words at a time. Henriquez said her daughter is aware that her mother is an artist, but she’s not sure how much she comprehends that the paintings were about their relationship during the pandemic.
“When I was doing the arches it was like I was bridging the gap between Abigail and myself,” Henriquez said. “I want my daughter’s life to have substance, to have meaning. I want people to know she exists.”
The paintings, which are on display through the end of May, reflect joy and also the struggles of parenting a child with autism. The work is part of a Portland Museum of Art exhibit called “Untitled, 2020” a showcase designed to give Maine artists a vehicle for expressing how 2020 affected them or society, or how they wanted to explore life during a worldwide pandemic.
For Henriquez, simply being able to visit her daughter as much as she wants to is “lovely.”
“Before, we couldn’t hug her, hold her or even touch her, but now we can go visit her anytime we want. It’s an amazing feeling,” Henriquez said.
As the pandemic eases, many of the support services for Mainers with autism and their families are returning, said Siegel, the MaineHealth specialist. However, he noted that COVID-19 took away an opportunity to progress — especially for younger children with developing brains.
“How do you make up for that time?” Siegel asked. “We try, but I’m not sure you can. If you have a 4-year-old with autism who missed those services, that’s a critical window that they missed.”
A commentary published in March in the Journal of Autism and Developmental Disorders highlighted how the pandemic cut off many supports and increased the risk of mental health problems, post-traumatic stress and anxiety disorders for this vulnerable population.
“Stay-at-home and shelter-in-place orders, closures of community locations and nonessential health services, and social distancing standards left parents, caretakers and other natural supports attempting to cover the majority of service needs under severely curtailed options, and professionals struggled to offer their services from a distance,” the journal read. “In the U.S., many relied upon services were significantly modified or limited due to the pandemic, impacting educational and vocational activities, available unstructured leisure time opportunities, and access to health services for individuals with (autism spectrum disorders).”
A survey of families of 1,044 European adults with autism or developmental disabilities found that 75 percent reported an increase in depression and anxiety compared to before the pandemic, according to research published in March in Molecular Autism.
Lynn Robertson, whose 7-year-old son, Isaac, has high-functioning autism, said her family was devastated to learn that the Center for Autism school in Portland would close due to the pandemic in March 2020, the same week that he was supposed to start attendance there.
Public school did not work out for Isaac, and the Robertsons had to wait several more months before he could begin school at the Center for Autism, at first part time in August and then five days a week last fall.
“When things are outside of the norm, outside what’s expected, he has a hard time adjusting to that,” Robertson said.
She said her son has since had such a positive experience at the Center for Autism school that he has rebounded. But during the height of the pandemic, when the Robertsons had little social activities with others, it was hard on the entire family. Isaac has two siblings, a 6-year-old brother, Asher, and a 5-year-old sister, Joy.
“We all need that human interaction,” Lynn Robertson said. “It makes things difficult not only for the child, but for the rest of the family, trying to cope but never having a break, because you can’t leave the kids with a babysitter or family. Everyone’s stress level gets higher.”
During parts of the pandemic, the family couldn’t do typical things together that would give Isaac practice working on socializing, such as going to the store, church or a playground.
“A lot of Isaac’s issues lie with social interactions, and he was missing that piece,” Robertson said.
Siegel said fortunately, some services for children and adults with autism are expanding, including the new Center for Excellence in Autism and Developmental Disorders in Portland, which is slated to open in August.
Operated by Maine Behavioral Healthcare, the K-12 school will expand from 15 to 20 students, preschool will go from eight to 20 students, and the outpatient clinic for children will double, from a current capacity of 200 to 400. A new outpatient clinic for adults will increase its capacity from 300 to 750 patients.
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