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Nevada Interrupted: Virus, school shutdown brings new layer of challenges for families of kids with autism

Luz Gray
Luz Gray
Michelle Rindels
Michelle Rindels
CommunityCoronavirus
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For children with autism, routines can be sacrosanct. 

The disruptions brought on by the pandemic are particularly acute for parents such as Olivia Espinoza, whose 15-year-old son has severe autism and is non-verbal. It’s been difficult to communicate to him why he can’t do his normal activities or leave the house.

“It's difficult for us to know what is it that he wants, what are his concerns, the reason for his crisis, and more in these moments because he wants to go out,” said Espinoza, who started the organization AzulBlue for Spanish-speaking families of children with autism. 

Parents are also balancing health concerns and fear of contracting the virus with the fact that therapy is considered an essential service, available if families and providers are willing. Many families have waited months or years to get their children into the applied behavioral analysis (ABA) therapy, which can be life-changing but is costly and is sometimes recommended for hours every day.

There are about 8,500 children estimated to have autism within Nevada’s school system, but only several hundred get help through the Autism Treatment Assistance Program or Medicaid to afford the expensive services.

“I think right now we have to have priorities, and also there are many providers who are urging parents to bring their children to therapy and they are threatening that if they don't come, they'll lose their spot,” Espinoza said in a Spanish-language interview. “And I don't think this is the time to say this to the families because of course the families are scared.”

Still, families have noticed some regression in their children as they’ve skipped the therapy. Luz Garcia noticed it in her two children, ages 9 and 10, who have autism.

“The children have more anxiety, more hyperactivity,” she said. “I have a husband who works in construction and in the afternoon he helps me and between the two of us, one of us is in charge of one, I’m in charge  of the other, and it’s easier when he comes home.”

A teacher sent home some books she can read to her children, but Garcia said it’s hard to replicate the experience, chiefly because she doesn’t speak English like the teacher does.

“Of course [they're regressing],” she said. “In the first place, it really affects me because of the language. I don't explain things to them like their teacher. I don't speak English and my husband doesn't either.”

Amor Montiel’s son David, 11, is high functioning and understands the situation. She’s worried about his progress since she stopped therapy, but sees it as a break from the hectic schedules that children with special needs have — from school to therapy to the next activity to more therapy.

“My son has been taking it well. It's restful because all the time they're saturated with activities,” she said. “I think this is a good time to be kids, to have fun, to try to do different things.”

She’s happy to be able to maintain quarantine in her household. At the same time, she’s concerned about the end of the shutdown and is not sure she’ll be ready to put her son immediately back in therapy when normal activities resume in force.

“They said that's fine but the moment that the government says things are open, and we don’t go back, he’ll lose his spot and they're going to put him on a waiting list again,” Montiel said.

For many families in AzulBlue, finances have been yet another stressor on top of uncertainty about their children’s progress and the pressure of being stuck at home day in and day out. 

“Mentally, I think that yes, we will need help,” she said, adding that she hopes “that the parents that feel alone talk. This is why we have these groups. Get together with someone that is in the same situation.”

They’re banding together to help. So far, members have helped deliver groceries to nearly 40 different families who are in need.

“AzulBlue has stepped up in difficult situations,” she said. “Without a doubt, this is the most difficult. And the little that we have, we want to share.”

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