'He's Incredibly Confused': Parenting A Child With Autism During The Pandemic

14 hours ago
Originally published on May 22, 2020 9:12 pm

Living with the pandemic has been difficult for everyone: the isolation, the need to wear protective gear like masks and gloves, the adjustment to working or learning from home.

For those living with or caring for someone with severe autism, those challenges can be exponentially more difficult.

"Wearing gloves or masks, you know, things like that? That's just not going to happen here," says Feda Almaliti.

Almaliti is the mother of 15-year-old Muhammed, who has severe autism. She is also vice president of the National Council on Severe Autism.

In an emotional interview with NPR, she describes the toll the current crisis is taking on her family and others like hers.

"Muhammed is an energetic, loving boy who doesn't understand what's going on right now. He doesn't understand why he can't go to school. And school is one of his favorite places to go. He doesn't understand why he can't go take a walk in the mall when that was one his favorite things to do. He doesn't know why he can't go to the park, why he can't go down to the grocery store," Almaliti says. "So he's incredibly confused, in this time when we're all confused, but he really doesn't understand it."

Here are excerpts from the interview.

How does distance learning work for your son, who has limited language and other difficulties?

It does not work for him. And I don't think it works for a lot of kids like him. Our kids need highly structured, one-to-one, specialized teachers and staff to teach them. We can't do that over the Internet.

You wrote an essay and quoted a study from the University of Wisconsin-Madison that found that mothers of children with autism experience stress levels comparable to those of combat soldiers. And that is before you layer a deadly pandemic on top of things.

It's the unknowing. ... We don't know when it's going to end. We don't know what's going on, and to deal with autism at home makes it even harder. The only support that I get to get through it is through fellow autism parents. We have Zoom calls, and we try to find humor in this thing. ... We're just trying to lean on each other to get through. Because I can't do it alone. Nobody can.

What about the rest of your family? How are they coping?

They're doing the best they can every day. ... But I don't know how to accurately convey, it's really hard. ... It's really hard because I almost feel like nobody hears us. Because my son doesn't really talk. He doesn't talk. And I'm supposed to be his voice. And no one's listening to what's going on for our families. You know, no one gets that we are just as vulnerable as coronavirus people. The coronavirus is going to come and go. Autism is here to stay. ...

We desperately need extra help to get through this. And I firmly believe that autism support workers, aides, their teachers and caregivers are as essential as nurses and doctors and should be given the same accommodations. People don't understand that for our families, caregivers are our first responders. Special needs schools are our hospitals. Our teachers are our ventilators. And we can't do this without them.

Listen to the full interview at the audio link above.

Copyright 2020 NPR. To see more, visit https://www.npr.org.

AILSA CHANG, HOST:

Just a few months ago, Army recruiters could move out in force visiting schools, malls and homes hoping to fill the ranks. Now, with America in a defensive position against the coronavirus and teenagers hunkered down, the recruiters are trying new tactics. NPR's Pentagon correspondent Tom Bowman visited a recruiting station in Los Angeles to learn more.

NATHAN ANSLOW: Try to lead by example and motivation.

TOM BOWMAN, BYLINE: The Inglewood Army Recruiting Station is set in a crowded strip mall tucked among fast-food, liquor stores and palm trees. Inside are the familiar posters, smiling soldiers with the slogans Army strong, Army team. Sergeant First Class Nathan Anslow runs the station. He points to something new - a stack of questionnaires.

ANSLOW: These are COVID screening forms.

BOWMAN: He reads down the list.

ANSLOW: I go over the screening questionnaire. Do they have any of the symptoms? Have they felt any of this? Have they traveled? Are they currently sick or been around someone who's sick?

BOWMAN: On the table are Clorox wipes and a bottle of hand sanitizer. Another table holds boxes of protective gear.

ANSLOW: So if they come to the office and they don't have a mask and they don't have gloves, I have extra to provide for them.

BOWMAN: All the recruiters already have their masks. Anslow wears a white one. Others have black ones, gray ones and, of course, camouflage ones. This storefront office normally would hold 11 recruiters, but at the age of distancing, Anslow has chopped down that number - just three recruiters at a time in the office and only three recruits who come in just to sign the final paperwork. And the all-important parents...

ANSLOW: If the parents want him to sit down and they want to go over things, I set up a separate appointment for them because, like I said, I don't want, you know, a bunch of people in here at the same time because that puts everybody at risk.

BOWMAN: So recruiters are somewhat stuck. They can't go out and few people can come in. That's why recruiters are going online. They're on Facebook and Twitter, Instagram and chat rooms. The Army was already moving in that direction. The age of the TV ad is fading.

DANIEL COELLO: A lot of my future soldiers come from social media, them, you know, just seeing my story and then just reaching out to me.

BOWMAN: That's Staff Sergeant Daniel Coello. He's 27 and a Cuban immigrant who enlisted and then served in Iraq. The virus is on the minds of both recruits and parents, he says. Some recruits want to sign up because the coronavirus is all but ending any job prospects. And the parents, they want their kids to wait for a healthier time.

COELLO: Mainly, it's the parents and, you know, the family members that are concerned for them, you know, because they don't want them to leave home, you know, just so that they're not exposed.

BOWMAN: Still Sergeant Coello has been able to set aside any parental concerns. His goal for the year is 36 recruits. He's already signed up 32, but it's a small slice of an army hoping to attract some 69,000 by the fall. The Army's intent on making sure those future soldiers stay healthy. Before shipping out to basic training, recruits must quarantine for two weeks, wear masks and socially distance. Even with those defensive measures, the coronavirus ambushed a local recruit recently just as he arrived at the training base.

JASON PROVENS: That's when they tested and found out this individual was positive.

BOWMAN: Command Sergeant Major Jason Provens.

PROVENS: Could that have been picked up in transport? Yes. Could that have been picked up at the airport? Yes. Could it been picked up the station? Yes. So that's where we have to backwards trace all of the contact. And we have to assume the worst.

BOWMAN: The result - a recruiting station in nearby Long Beach had to close and sanitize, and a recruiter is now quarantined for two weeks. Army officials are quick to point out the recruit was tested and isolated before he could infect others.

MICHAEL GRINSTON: You know, the really good news is once we get to basic training, we have a test.

BOWMAN: That's Sergeant Major of the Army Michael Grinston, who's visiting this recruiting station with a top Army officer, General Jim McConville.

GRINSTON: We're going to know right off the bat and then no matter where you're at 'cause we have our hospitals and every training location right now has their own test.

BOWMAN: For his part, General McConville hopes all this will prevent another cluster of cases. That happened back in March when the South Carolina training base at Fort Jackson was hit with COVID. Some 50 recruits fell ill.

JIM MCCONVILLE: We're pretty comfortable with the procedures that we have in place, but we respect the virus, too. We don't want to get overconfident and think we have it all figured out. We don't.

BOWMAN: So the virus-free recruits will wear masks while they train, and they have a new piece of gear - a pocket-sized hand sanitizer.

MCCONVILLE: And they gave me that at Fort Jackson. It's Army-issued Purell. It's right there in the green bottle.

BOWMAN: Complete with indentations for an easy grip.

MCCONVILLE: Only the Army could figure out, you know, how to have, like, you know, a handhold.

BOWMAN: He stuffs his tactical Purell in his cargo pants and heads out through the masked recruiters.

UNIDENTIFIED PERSON: (Unintelligible).

BOWMAN: Tom Bowman, NPR News, Los Angeles. Transcript provided by NPR, Copyright NPR.