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'A lot of stress': School closure strains families with children who have disabilities

'A lot of stress': School closure strains families with children who have disabilities

From the The COVID-19 pandemic hits home: Keep up with the latest local news on the coronavirus outbreak series
Stressed over closure

Anna Hauser has had to find ways to replace the services her 14-year-old son, Xavier, is not receiving at school.

Anna Hauser’s son Xavier typically has a team of 15 people caring for and educating him throughout a school day at Madison’s East High School.

But with schools closed statewide to prevent the spread of the new coronavirus, the 14-year-old freshman, who has spastic quadriplegia cerebral palsy making it impossible for him to walk or talk, hasn’t been getting in-person services such as physical therapy he would typically get at school.

Hauser, who has two other children — ages 7 and 11 — at home, is finding YouTube math videos to keep her oldest child educationally engaged and doing the stretches a physical therapist would normally provide for him.

“They’re just stressed because life is so much different,” Hauser said of her children. “We live in a little two-bedroom apartment. Nobody has any room to breathe.”

Almost a million Wisconsin school children are out of class following an order that shuttered all schools by March 18, forcing families to adapt work schedules, child care arrangements and learning opportunities.

But the absence of school can be particularly challenging for families who have children with disabilities. They worry about their children losing learned skills and the upending of comforting daily routines, not to mention their children’s disabilities putting them at a higher risk of COVID-19, the respiratory illness caused by the new coronavirus.

Across Wisconsin, 14% of public school students, or 120,000 children, have a disability, ranging from speech problems to severe physical or developmental disorders.

No room to breathe

Hauser is looking after her three children, including Xavier and her 7-year-old daughter, Leora Ivanov, in a two-bedroom apartment in Madison. With everyone home at once, she said, "nobody has any room to breathe."

Children with special needs often do more hands-on school work that doesn’t easily translate to the virtual learning environments schools are moving to, said Beth Swedeen, executive director of the Wisconsin Board for People with Developmental Disabilities. Teaching parents how to provide those activities, especially if they have other children they’re looking after, can be difficult.

“So many of the students with disabilities have very close connections to individual staff members, very close relationships with them, and those have been disrupted,” Swedeen said. “For all the lesson plans and all the enrichment activities, you can’t replicate a caring adult.”

Challenges at home

Routines and structure are important for all children, said Sigan Hartley, an associate professor in human development and family studies at UW-Madison.

For children with autism and other neuro-developmental conditions, though, a daily school schedule can make the world more predictable, Hartley said.

“It gives them a little bit more power and control, they know what to expect,” she said. “For a lot of kids, particularly kids with autism who may struggle with being flexible, they tend to really rely on these routines. Change is really tough.”

Anna Moffit said the loss of structure offered at Cherokee Heights Middle School is making her 13-year-old son, Felix, who is on the autism spectrum, much more anxious.

“It’s really challenging,” said Moffit, a former Madison School Board member. “For Felix, he is a kid who really needs routine. The structure and his routines lower his level of anxiety, so not having school has been really hard on him.”

Compounding the difficulties, Moffit said the activities the family would normally do to help Felix lower his anxiety aren’t available, such as swinging at neighborhood parks, visiting the Vilas Zoo and going to PlayN Wisconsin — an indoor playground in Middleton.

“I think he has a lot of uncertainty,” she said. “He hasn’t had any physical escalations — although sometimes they can get to that point — but he has definitely had some emotional escalations where he is just very upset and sad.”

Like Hauser, Martha Siravo is trying to provide physical therapy to her 7-year-old daughter, Jasmine, who has epilepsy and cerebral palsy, which affects a person’s ability to control their muscles.

But she can’t provide the full range of stretches Jasmine normally receives at and outside of school because Siravo uses a wheelchair.

She said Jasmine typically “thrives on the structure” of school.

But being at home, Siravo said, she’s keeping her daughter on a looser schedule since “at school it’s much more easier (to keep to a schedule) because mom’s not there; you’re just following your peers.”

Virtual learning

Swedeen said her organization, which does advocacy work for people with disabilities, has heard concern from families about lost learning time.

“For kids with disabilities, maintaining a skill is also important,” she said. “It’s not just learning new skills.”

Many school districts have already switched to virtual or online learning during the closure.

If schools require students to participate in online learning, special education and the related services must be provided “to the greatest extent possible,” according to guidance from the Department of Public Instruction.

Moffit is skeptical her son, who has limited verbal communication, will be able to engage academically in virtual learning because most school activities he does are hands-on, such as cutting up numbers and putting them in order. She said he also has motor skill difficulties, which doesn’t allow him to use a keyboard.

Siravo said her daughter, who attends first grade at Franklin Elementary, is also a hands-on learner. Before she left school, Siravo asked her daughter’s special education teacher for pencil-and-paper activities she could do at home and received a package almost an inch thick.

In addition to being separated from school, Hauser said Xavier doesn’t have access to a communication device for nonverbal people he was testing at UW-Madison’s Waisman Center.

“He’s not only had his education taken away, but he’s had his ability to speak taken away,” she said.

Not alone

Hauser is not alone in the unique challenges families with children who have disabilities are facing during the statewide school closure as others struggle with the upending of a daily schedule that can be a source of comfort, and those parents worry whether their children will need to relearn skills.

Adding to the difficulties, some disabilities may put children at a higher risk if they get COVID-19, which can more seriously affect older people and those with underlying medical conditions.

Moffit said she pulled her son out of class before Dane County schools closed on March 16 because he has underlying respiratory problems. Hauser said her son has difficulties breathing because of his cerebral palsy, which has required him to have at least one surgery a year since his birth.

“He’s one of those people who’s at risk,” Hauser said. “They’re saying kids won’t get sick. Well, my kid is the kid who will get sick and not get better.”

Strategies to help

For families whose children are used to getting a lot of help during the school day from special education teachers and different kinds of therapists, Hartley, the UW-Madison professor, said it’s important to recognize some of those services won’t be available and to set small, manageable goals to supplement those services at home.

To help children — particularly those with autism — understand the change in routine, Hartley suggests using “social narratives” or “social stories,” which is a way of communicating something complicated, such as why a child isn’t able to go to school, through a picture-based story.

She also said virtual support groups can be a good source for getting advice from other parents on what has worked for them, such as alternative coping strategies for children whose typical activities for relieving stress aren’t available.

And it’s important, Hartley said, for parents to engage in self-care.

“They can only be an effective parent and an effective teacher if they themselves have their own health needs met,” she said.

Transitioning students

Before businesses started shuttering last month in response to the pandemic, Lisa Pugh said her 20-year-old daughter, Erika, was working at a Stoughton sports bar and grill preparing the restaurant for the lunch crowd. She had just begun volunteering at a horse therapy organization and was ready to start a third part-time job.

But Erika, who has Rubinstein-Taybi syndrome, a developmental disability caused by a loss of genetic material on a chromosome, is no longer able to work or receive in-person job coaching from the Stoughton School District.

“For someone with a significant developmental disability, any change in routine is really difficult, and this just flipped her routine on its head,” Pugh said.

School districts offer programs to some students with disabilities between ages 18 to 21 that prepare them to live independently. The programs can involve job coaching, volunteer experiences or cover topics like how to ride public transit.

But with communities widely shut down, Swedeen said “that particular population of students is really struggling because the activities they were going to every day aren’t available and there’s really no pen-and-paper, curriculum-type replacement for that.”

Pugh, who leads The Arc Wisconsin, a disability advocacy organization, said this is the last school year her daughter is able to receive services from the Stoughton School District under federal special education law. She worries whether there will be enough time for the district’s educational assistants to help Erika relearn job tasks, such as folding pizza boxes.

“We were on such a great path to Erika’s future in her transition programming,” Pugh said. “The COVID-19 crisis has really put all of that to a halt, and we just really don’t know what the future holds.”

Editor's note: The story corrects Martha Siravo's daughter's grade level.

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