Households Of Folks With IDD Rebuild Frayed Ties As Pandemic Eases

Susan Osborn, photographed May 2020, sits with her son Noah’s service dog, Saxby, and her son’s favorite toy on a bench in Union Point Park in New Bern, NC. At the time, Noah, a 17-year-old with autism and other developmental disorders, was on a layover. Because of the coronavirus pandemic, Susan hadn’t seen him in more than two months. (Trent Brown / The News & Observer / TNS)

PORTLAND, Maine – Celeste June Henriquez, an artist from Portland, showed her 18-year-old daughter Abigail Henriquez Peck through the Portland Museum of Art last week until they reached the location of her two oil paintings, Big House and Big House ”And“ Snow is Coming ”hung on the walls.

Henriquez’s work features bold abstract renderings of arches and bridges symbolizing a long separation from their daughter and the troubles the COVID-19 pandemic has brought to their family.

Peck, who has autism, lived in a New Hampshire residential center for adults with developmental disabilities until he returned to Maine last month. For almost a year as the pandemic raged and visits restricted, she was separated from her family except for brief one-hour visits last summer.

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“It made me nervous and sad. I felt that our family was really divided, ”said Henriquez. “She was excluded from all the things she wanted to do but couldn’t. She’s lost her routine and desperately needs a routine. “

Families with people with autism and intellectual disabilities have had their lives affected by the pandemic and tend to suffer more acutely than people without these conditions, research shows.

In Maine, around 25,000 people – adults and children – are likely to 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 on this population has been massive,” said Dr. Matthew Siegel, director of the Developmental Disorders Program at Maine Behavioral Healthcare. “It was a silent crisis that didn’t get a lot of media and government attention.”

Siegel said specialists working in the field of developmental disabilities are seeing severe regression in education and behavior during the pandemic that families and professionals had worked on for months and years to improve.

“For many of those who are autistic, they need education to be part of the community and they need a system of personal support, and that support can be intense,” Siegel said. “With the outbreak of the pandemic, all of these supports disappeared and they disappeared overnight.”

Aside from the hour-long visits last summer, Peck was separated from her family for almost a year during the pandemic as she lived in an institutional setting in Manchester, New Hampshire. She moved to Maine last month and reunited with her family, including her mother and father Robert Peck. Abigail Peck now lives in a small group in Lewiston and has unlimited visits with family members.

Henriquez, 60, said the pandemic had disrupted 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, eating ice cream, cooking together, doing handicrafts or reading.

When the pandemic hit, the facility where Peck lived suffered from numerous COVID-19 outbreaks, Henriquez said, and any visit was banned for months. Peck himself contracted COVID-19 last March. Fortunately, it was a mild case and she recovered within two weeks.

When the visit finally resumed last summer, visits were limited to one hour per week, with families spread out over a table in an outdoor pavilion. The family improvised, brought music and played it as they danced around the pavilion table, two meters apart.

To cope with the breakup, Henriquez turned to her artwork and worked on the two abstract paintings for nine months before she felt complete. The titles “Big House” and “Snow Coming” come from phrases that her daughter uses a lot.

“Look, Abigail, this is ‘Big House,'” said Henriquez during the museum visit last week, pointing to the painting with arches and bridges painted with splashes of blue, red and yellow. “Over here is the ‘snow is coming’.”

Peck took a quick look at the pictures before moving on to another part of the museum. Like many people with autism, Peck is challenged by verbal communication. She usually only speaks a few words at a time. Henriquez said her daughter is aware that her mother is an artist, but she isn’t sure how much she understands that the paintings were about their relationship during the pandemic.

“When I did the arcs, it was like closing the gap between Abigail and me,” said Henriquez. “I want my daughter’s life to have substance and meaning. I want people to know that it exists. “

The pictures, which are on display until the end of May, reflect the joy and also the difficulties of raising a child with autism. The work is part of an exhibition at the Portland Museum of Art titled Untitled, 2020, a showcase designed to provide Maine artists with a means of expressing how 2020 affected them or society, or how life has affected them wanted to explore during a global pandemic.

For Henriquez it is “nice” to be able to visit her daughter as often as she wants.

“We used to not be able to hug, hold or even touch her, but now we can visit her whenever we want. It’s an amazing feeling, ”said Henriquez.

As the pandemic subsides, 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 has taken away the opportunity to progress – especially for younger children with developing brains.

“How do you make it up to you?” Siegel asked. “We’re trying, but I’m not sure you can. If you have a 4 year old with autism who missed these services, this is a critical window they missed. “

A comment published in March in the Journal of Autism and Developmental Disorders highlighted how the pandemic is cutting off many supports and increasing the risk of mental health problems, post-traumatic stress and anxiety disorders for this vulnerable population.

“With orders to stay at home and seek refuge on site, the closure of community sites and non-essential health services, and social distancing standards, parents, carers and other natural supporters have sought to meet the bulk of the service needs under severely limited options and professionals Trouble to offer their services remotely, ”read the diary. “In the United States, many who have depended on services have been significantly changed or restricted due to the pandemic, the impact on educational and professional activities, the unstructured recreational opportunities available, and access to health services for those 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 pre-pandemic, according to a study published in Molecular Autism in March.

Lynn Robertson, whose 7-year-old son Isaac has high-functioning autism, said her family was devastated when she learned that the Portland Center for Autism School would close the same week as him due to the March 2020 pandemic should participate there.

Public schooling wasn’t working for Isaac, and the Robertsons had to wait a few more months before he could go to school part-time at the Center for Autism in August and then five days a week last fall.

“When things are out of the norm, out of expectation, he has a hard time adjusting,” said Robertson.

She said her son has had such positive experiences at the Center for Autism School since then that he has recovered. But during the height of the pandemic, when the Robertsons had little social activity with others, it was difficult for the whole family. Isaac has two siblings, a 6 year old brother, Asher, and a 5 year old sister, Joy.

“We all need that human interaction,” said Lynn Robertson. “It makes things difficult not only for the child but also for the rest of the family to try to cope with but never take a break because you can’t leave the kids with a babysitter or family. Everyone’s stress is getting higher. “

During parts of the pandemic, the family couldn’t do typical things together that would lead Isaac to engage in socializing, such as going to the store, church, or a playground.

“A lot of Isaac’s problems are with social interactions, and he was missing that piece,” said Robertson.

Fortunately, Siegel said some services for children and adults with autism are expanding, including the new Portland Center for Excellence in Autism and Developmental Disorders, expected to open in August.

The K-12 school operated by Maine Behavioral Healthcare will be expanded from 15 to 20 students, the preschool from eight to 20 students and the outpatient department for children will be doubled from the current 200 to 400. A new outpatient clinic for adults will increase its capacity from 300 to 750 patients.

© 2021 Portland Press Herald
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