In one household, a mother has taken on the role of three adults to meet the emotional, educational and physical needs of her partially paralyzed teenage daughter.
Across town, a mom facing homelessness has turned a hotel room into a home and school for her family of five, and a son with ADHD.
In another home, a mother of a son with Autism is watching their relationship change as she takes on the role of educator and therapist.
With schools closed due to the coronavirus pandemic, managing nontraditional instruction (NTI) at home is a huge challenge for many families. But for parents of children with disabilities, the task is monumental. Jefferson County Public Schools (JCPS) has 13,000 students with special needs. We wondered how the parents of those children are faring in their roles as teacher, therapist and, of course, parent. We spoke with three mothers.
A Mother Goes ‘To The Ends Of The Earth,’ And It Takes A Toll
April 23rd ended up being a pretty good day for 15-year-old Angelina Miller, and her mom, Susan Miller. But, it got off to a rocky start. Angelina is a teenager, with all the stormy ups and downs of adolescence. She also has right-side hemiplegia, a condition caused by a stroke at birth. The right side of her body is partially paralyzed, and she has some intellectual disabilities, especially around language. It also means she has trouble regulating her mood.
“Her emotions can turn on a dime,” her mother said. Like that morning, the Millers ran out of Angelina’s favorite cereal, and Angelina became extremely upset, so she began relying on one of her coping mechanisms: her expansive imagination.
“She’s very creative,” her mother, Susan, said. Angelina went to her room and started packing her bags. She and the Ninja Turtles were leaving town, she told her mother.
“I’m pretty sure if it hadn’t been raining, she might have wandered into the yard with her suitcase,” Miller said. “I mean, she was pissed.”
Eventually, after an hour on a call with Angelina’s behavioral therapist, Miller managed to talk her down. The rest of the day was relatively smooth sailing. Angelina had a web conference call with her classmates, the first time she had heard from them in weeks. Angelina, usually a loner, surprised her mother with her reaction to seeing her classmates on screen.
“Her face just like lit up when she saw everybody,” Miller said.
But by 8 p.m. Miller was exhausted, physically and emotionally, as she is every day now that the coronavirus pandemic has kept schools closed.
Before the pandemic, Angelina was in a self-contained classroom at Manual High School with eight other students, one special education teacher and two aides. She also has regular visits from behavioral and speech therapists, which are provided through Medicaid.
Now, Miller is the only adult offering in-person help to her child throughout the day. That includes assistance using the bathroom, which Miller said is becoming increasingly difficult as Angelina begins to develop a sense of modesty in her teenage years.
“That has probably been the one hardest thing about the quarantine, is that there is nobody else to help her with the bathroom right now,” Miller said. “Obviously I would go to the ends of the earth for her. But I didn’t realize that sometimes it’s nice that, a couple times a day, it’s somebody else.”
Miller is carrying out most of her daughter’s instruction on her own, too. Miller has been laid off from her job at the Council on Developmental Disabilities due to the pandemic. So she’s home all day with her daughter, her oldest son, a high school senior, and her father, who is in his 70s. Her husband is gone for long hours – pulling 70 hour work weeks at a Kroger distribution center.
Angelina’s special education teacher provides materials and assignments and is available by phone or FaceTime if they need her. Academically, Angelina is focused on life skills – counting money, reading prices, the calendar and the temperature. If she’s working on the computer, Miller said, her daughter can stay motivated on her own. But if it’s worksheets, Miller has to stay at her side to keep her on task. She’s not demanding Angelina do more than an hour a day of schoolwork, because she worries the pressure would lead to arguments and more behavioral issues.
Angelina is also using a web conferencing app to continue regular speech therapy and behavioral therapy through Medicaid. But Miller still worries about how far behind her daughter will be once the pandemic is over, especially when it comes to the social and behavioral skills she’s been working on.
“Even with all the supports we have, the best I think we’re going be able to do is not have major regression,” she said. “But for a lot of families who don’t have the support, it’s just going to be survival, honestly.”
A Mom Worries She’s Failing Her Son
Across town, another JCPS mom, Brooke Martin, felt like she was caught in a bad dream.
“NTI has been a nightmare for me. It’s been a nightmare,” Martin said.
Martin’s son, 9-year-old Ian, has a mild mental disability, attention deficit/hyperactivity disorder (ADHD), along with some emotional and behavioral challenges. Martin has struggled with his instruction since schools closed.
NTI is just one on a list of problems Martin is facing right now. She’s had trouble finding stable housing for herself and her four children since her landlord raised her rent right before the pandemic. Now the five of them are living in an extended-stay hotel, sharing one room and two twin beds: Martin, Ian, her infant son, and her two teenage daughters. Until recently, the family had one computer, which Martin is borrowing from Jefferson Community and Technical College (JCTC), where she is a full-time student studying Human Services.
“We are just not equipped with what we need to be running a school inside this hotel,” Martin said.
Technology has been a major challenge. The family automatically qualified to receive a Chromebook and a Wi-Fi hotspot from JCPS because of their income and Ian’s disability. The district sent out around 20,000 Chromebooks to low-income families, and 6,000 hotspots to students with disabilities. Martin signed up for both on the first day possible, with her new address. But more than two weeks into NTI, the family hadn’t received either device. It’s not really clear what happened, but it seems like there was a disconnect because of the changes in address. Martin’s phone was also in and out of service in the weeks after she applied for the devices.
“Jefferson Community College, had it not been for them giving me a computer, I don’t know what we would have done,” Martin said.
The computer didn’t solve all Ian’s instructional challenges. For one, the whole family had to share it, including Martin. While she was managing instruction for Ian, his two sisters, and caring for a baby, Martin was also preparing for her final exams at JCTC.
When Ian couldn’t use the computer, he used Martin’s smartphone. But the special math program he needs doesn’t load correctly on the narrow smartphone screen.
For WiFi, they used Martin’s data from her phone plan. But that quickly ran out.
Sometimes the computer itself exacerbates Ian’s anxiety.
“The day I set him on the computer, his face just turned bloodshot red, this was the first day he got on,” Martin said. “He was just in a sweat, and I said ‘Ian, bud, are you ok?’”
“I’m nervous, mom,” Ian said, according to Martin. Ian didn’t know how to log in, or use many of the functions Martin believed he had learned already.
“He was scared,” Martin said. “I don’t know what he thought, but he gets real nervous like that.”
She tried to get the information from his teacher about logging in and using the websites, but it took hours before she responded, and they went back and forth through email for more than a week.
Meanwhile, Martin was struggling with Ian’s behavioral challenges. It’s hard to get Ian to sit still and focus on schoolwork. Ian takes regular medication for his ADHD, but Martin said she stopped giving it to him because she can’t get him to eat when he takes it, and he doesn’t seem himself.
“He was so far gone in another world, nibbling at his fingernails and talking very little,” Martin wrote in a follow-up email to WFPL News.
Like Susan Miller, she’s worried her child is falling behind on his academic and behavioral goals.
“I feel like I am failing my son,” Martin said. “I feel like there’s more that I should be doing, but what can I do?”
Martin finally received the hotspot the last week of April, three weeks into NTI. She received the Chromebook on May 2.
Through all the chaos, Martin said she’s able to get Ian to do about 3 hours and 45 minutes a day of instruction on the computer or smartphone. That’s been easier since the Chromebook and the hotspot arrived. In addition, Martin and her daughters read with Ian for 20 minutes each night before bedtime.
A Mother’s Relationship with Her Son Changes
Jacqueline Craven and her 6-year-old son Liam were having a showdown in the living room.
It was the first day Craven had tried to get Liam to do his schoolwork for NTI. The assignment was supposed to be easy, just a warm-up. But Liam, who has autism and ADHD, wasn’t having it.
“I seen behaviors I had never seen in my son,” Craven said.
Liam kicked her. He threw things. He faked-sneezed in her face. He pretended to fall asleep. The worst for Craven was when Liam began self-harming to get out of the assignment. He slapped himself in the forehead with both hands over and over as hard as he could, sometimes even balling his hands into fists.
But Craven was not supposed to give in and let him off the hook. Fortunately, she had a secret weapon: in one earbud, Craven had Liam’s behavioral therapist on the line. He was watching everything through the screen on the Chromebook the family had received from JCPS, and he was giving Craven support and guidance.
“Jacque, I know it’s hard for you to ignore this, but you have to,” the therapist told her, according to Craven.
Finally after two hours, Liam gave in, and returned to the assignment. They were both exhausted.
“It was tough, for me and for him,” Craven said.
Waiting Liam out is part of his behavioral therapy, which Liam had just started right before the pandemic forced his treatment center to close. Craven and her husband were paying to send him to the Center for Behavioral Analysis and Therapy for three hours a day. Liam is usually a very sweet boy, Craven said. He loves pizza and telling his mother about dinosaurs. Before school closed, he was developing friendships.
“He was turning into a little social butterfly,” Craven said.
His autism and his ADHD come with challenges, though. Liam has a learning delay that puts him about 2 years behind. He also has a speech delay, anxiety and a tendency to bolt.
With the center closed to in-person services, Liam has a one-hour a day virtual visit with his therapist. And it’s helped. Their standoffs get shorter and shorter each time. But with school and the treatment center closed, Craven is often stretched thin physically and emotionally.
“Mommy has to play this role of a teacher, a therapist, and mommy,” Craven said.
Craven has found it very difficult to get Liam to do the work his teachers assign him for NTI. He tires quickly from being in front of the Chromebook. To help with the screen fatigue, Craven made copies of the paper packets his teachers sent home with Liam when schools closed in March. His teachers at Carter Elementary have designed assignments for him based on his interests: dinosaurs and pizza. Even still, Craven said she can only get her son to stay focused on school work for 15 or 20 minutes a day.
And as Craven has taken on the role of educator with her son, their relationship has changed.
“Now that we’re doing this work at home, the NTI, now I’m getting more kickback on the smaller things that he used to do with no problem,” Craven said. Liam used to be good at picking up his toys, for example. And now clean-up time has become a new battlefield.
But Craven said Liam has made progress. The tantrums are becoming more manageable with the help of Liam’s therapist. And even with the small amount of instruction, there has been at least one big success: A couple days before Easter, Liam spelled his name — out loud — for the very first time.