September-October 2021 | Parenting

Lost time

For many students with special needs, the pandemic meant the end of the structure and routine they so desperately needed. Virtual learning and therapies on Zoom could only do so much. As the school year begins, their families are facing complex challenges and trying to forge a path forward.

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Bayla, now 6, pictured at home in Potomac during class in January. Her parents installed a trapeze bar in their basement to help her get some energy out. Courtesy photo

Kate Eig Hurwitz uses air quotes when she mentions school. The sarcastic gesture sums up her take on that long stretch of remote learning when her son Tyler, who has anxiety and attention deficit hyperactivity disorder (ADHD), would run around the living room in circles during class or hang upside down on the couch. Often he’d fall asleep suddenly at the computer, a coping mechanism he uses when he’s overwhelmed. Her daughter, Bayla, wouldn’t engage with her online kindergarten class unless Eig Hurwitz was by her side—getting her supplies, repeating directions and helping with letters and numbers. Even though Bayla hadn’t been formally diagnosed, her parents suspected that she was dyslexic.

Soon after Montgomery County Public Schools closed for in-person instruction in March 2020, Eig Hurwitz cut back her work hours at a historic preservation firm to concentrate on her children. Her goal was to have them stay put in front of their screens so they could pay attention in their classes. If they needed a “movement break,” they could jump on the minitrampoline or use the punching bag and trapeze in the basement. Everything was within reach—scissors, markers, fidget spinners, squeeze balls. Despite all her efforts, it was mayhem. “You can’t replicate school,” she says, “especially when your kids have special needs.”

Tyler threw a screaming fit when it came time to take a standardized reading test. “Would he have done that if he were at school? Not a chance,” Eig Hurwitz says. (Her son, now 10, also has learning disabilities that affect his reading and writing.) In normal times, Tyler excelled in school and had plenty of friends. His parents often mused that he’d grow up to be an engineer or an architect because he’s an expert at building just about anything with Legos. But during virtual learning, he refused to turn on the camera except for brief moments during art class, when he had to show the teacher his work. Any negative feedback set him off. “He’d listen politely while she spoke, and then he’d turn off the screen and scream at me,” Eig Hurwitz says. By January 2021, she gave up on art class and told Tyler he didn’t have to take it that quarter. “I couldn’t deal with the constant freak-outs anymore.”

Bayla’s brother, Tyler, now 10, in the family’s makeshift classroom during the first week of fourth grade last school year. Courtesy photo

The time she spent dealing with Tyler’s meltdowns pulled Eig Hurwitz away from Bayla, now 6, whose behavior deteriorated as the pandemic dragged on. She began to wonder if her daughter also had ADHD, which might explain the increase in her angry outbursts. During class, Bayla would sit at the computer only if she could play with her toys. Taking them away triggered a tantrum. Once, during music class, Bayla got so upset by her mom leaving her side that the family’s part-time babysitter had to intervene. “Together we could not get her to calm down,” Eig Hurwitz wrote in a journal she was keeping. Bayla growled, stomped on their feet and headbutted them, settling down only after the babysitter suggested going to the park.

The stress and lack of structure threw the Potomac family’s dynamic out of whack. Tyler and his older brother, Noah, now 12, started filling their downtime with video games. “They’d get off their screens and pick a fight with the first person that walked by,” Eig Hurwitz says. Meanwhile, she was physically and emotionally drained. Her husband, a lawyer, tried to pitch in with the kids when he could, but was usually tied up with work.

It’s not as if teachers and administrators at Cold Spring Elementary School in Potomac didn’t rise to the occasion, Eig Hurwitz says. Tyler got a lot of extra attention from the teacher, counselor and principal. They spoke to him in private “breakout rooms” on Zoom, called him on the phone, even visited him at home. His 504 plan—a formal plan that provides accommodations to allow students to access the general education curriculum—was altered slightly for virtual learning to provide modified homework, breakout rooms for testing, and other tweaks. All of that helped ease Tyler’s anxiety, but it didn’t help with his schoolwork. As for Bayla, “They kept saying: ‘What can we do?’ ” Eig Hurwitz recalls. “But there was really not much of anything to do until she was in the building.”

Bayla met two or three times a week with a private tutor online to work on her reading. She’s since been diagnosed with dyslexia and ADHD. Tyler saw his psychotherapist online every other week, and resumed in-person occupational therapy in December 2020. Tyler, a fifth grader, is eligible for special education services this year. “We did everything possible, yet it was still a nightmare,” Eig Hurwitz says. “We worked so hard to get to normal, but we couldn’t get there.” 

About one in six U.S. children ages 3 to 17 were diagnosed with a developmental disability between 2015 and 2018, according to the Centers for Disease Control and Prevention. Their challenges during the height of the pandemic were wide-ranging and emotionally complex, with some experiencing devastating social and academic setbacks, and others falling into the “too happy at home” category, says Dr. Lisa Shulman, a developmental pediatrician in New York City. One of Shulman’s clients, a boy with autism, got up every day at 5 a.m., dressed himself, got his backpack, and stood by the door to go to school, even though his parents told him it was closed.

As the new school year unfolds, families of students with special needs are scrambling, along with educators, to figure out how to forge a path forward. For many kids with developmental challenges, structure and routine give them stability in a world that often feels unstable to them, says Dr. Dan Shapiro, a developmental-behavioral pediatrician in Rockville. The pandemic upended the daily rituals they relied on by stripping away their usual access to everything familiar—teachers, sporting events, friends, physical therapists.

“It left families without their teams and exhausted their emotional bandwidth,” Shapiro says. He uses the bucket analogy to explain the impact. When people have the luxury of a nice big bucket, he says, they can carry emotions with plenty of room to spare. “But the pandemic shrunk all our buckets,” he says. “The amount of emotion and stress was already at the rim. Add one little thing and everything spills out all over the place.”

Ben Berzok dances to a Wiggles video on his computer. Photo by Lindsey Max

Jennifer Berzok says her 17-year-old son, Ben, who is on the autism spectrum, was angry, heartbroken and really scared when the pandemic hit. He developed an aggressive edge she’d never seen before. “It was as if all his defense mechanisms broke down,” says Berzok, who lives in Bethesda. “None of us had time to process what was happening, and none of us had answers to the questions like: When is it going to be over? Am I going to get sick? It was terrifying for him as well as us.”

Ben had been attending the Ivymount School in Rockville, a nonpublic school for children with special needs, but it closed for COVID-19. He was skating on Saturday mornings with an adaptive ice hockey team called the Cheetahs. But the ice rinks weren’t open. After hockey, he had been attending a three-hour program at school that involved cooking, music and social opportunities. But that went virtual and lost its appeal. Without his usual social outlets, Ben was at loose ends. He’d blast music on YouTube, mostly the Wiggles and Baby Einstein, while his sister Lexi, 14, was trying to study. He’d sometimes roam the neighborhood, with his parents’ blessing, to knock on doors and wave “hi” to friends. He’d also nap a lot. “All it takes is one nap, literally, to dysregulate things,” Berzok says. “It would lead to one night of not sleeping, which would lead to a nap the next day, and so on.” If Ben woke up at 3 a.m., he’d eat breakfast, in keeping with the pattern he was accustomed to instead of the time of day.

When his school fully reopened this July, Ben seamlessly transitioned back, says Berzok, who serves on Ivymount’s board of directors. Before the first day, he slept through the night for the first time in more than a year, aided by medication and his sheer will to be compliant so he could get back to his school routine. He’d already mastered putting on his mask without much of a fuss, and “this is a kid who wouldn’t wear sandals the first five years of his life” due to sensory issues, Berzok says. His parents began rewarding him if he stayed in bed five nights in a row, and it’s been working.

Marianne Noble of Chevy Chase says she’s seen a different trajectory with her son, Geoff, 16, who attends The Katherine Thomas School in Rockville, which serves children with special needs. Since the day Geoff was told he would have to transition to online learning, he’s been happy and thriving, Noble says. When he was given the chance to return to the building last year, he opted to stay home.

Geoff has severe ADHD and other learning challenges. He’s an outgoing boy who is highly distractible and impulsive, often blurting out answers in class or veering off topic in conversation, his mother says. He got good grades when school was virtual. He woke up on his own, made himself breakfast and logged into classes on time. He signed up for virtual office hours with his teachers and solicited their help with homework—his mom would hear him laughing in his room while he was talking to them. And although Geoff used to shun school dances, he went to three of them online, with activities led by guest DJs. As the days passed, Noble watched her son’s anxiety fade, and eventually weaned him off his anti-anxiety medications.

Noble attributes some of Geoff’s successes to reduced distractions during the pandemic, the lack of demands placed on him by his parents, and the limited interaction with peers, which was often a point of stress for him. Geoff would prefer to stay home this year. “I’m sort of 60/40 in favor of him returning to school,” Noble says during an interview in July. “It would be so easy if he stayed home because he’s happy. But I know he needs more human contact, more practice at social interactions.”

David Black, a pediatric neuropsychologist in Chevy Chase, says some of his clients have grown comfortable with lowered expectations, more screen time, and fewer social complexities. One of them does not want to take off his mask because he likes the anonymity it provides. “For some children with special needs, the challenges of reconnecting with the world are higher because their motivation is lower and the social skills they have to rely on are not intuitive,” Black says.

Virtual learning was the initial source of angst for many of Emily Stano’s clients, but now the return to fully reopened schools is their top worry. “As scary as it was to stay at home, it’s now equally difficult to reengage, to drop the mask or imagine eating inside of a cafeteria with other students,” says Stano, a clinical psychologist in Gaithersburg who works with students who have special needs. “It’s anxiety in the complete opposite direction.”

When it comes to educating children with special needs, federal law recognizes that a one-size-fits-all approach won’t do. The Individuals with Disabilities Education Act, or IDEA, requires that school districts identify and evaluate children who need specialized instruction and provide them with a “free appropriate public education” in the least restrictive setting possible. Each qualified student’s specific needs and goals are detailed—with input from families and educators—in a legal contract known as an Individualized Education Program (IEP).

“The majority of kids with an IEP end up in general education classrooms at their local school with a co-teacher or instructional assistant who is supporting them individually or as part of a small group,” says Rich Weinfeld, executive director of the Weinfeld Education Group, a special education advocacy firm in Bethesda. Some students may be placed in a special program within the public school system or in a private school paid for by the local school district. In extreme cases, students are placed in a residential treatment facility where they live and study away from their parents, Weinfeld says.

During the 2019-2020 school year, about 12% of MCPS students ages 3 through 21 (about 20,500 in total) qualified for specialized instruction and services through IDEA, according to an MCPS official. When the pandemic hit, the federal government and the state of Maryland made it clear that school districts must make every effort to honor a student’s IEP, with the understanding that exceptional circumstances could affect how a particular service is provided, says Nicole Joseph, a special education attorney who works with families in Montgomery County and other districts. “But many kids [with IEPs] got a small percentage of what they should have gotten,” Joseph says. “I have a client who missed hundreds of hours of specialized instruction, and they were being offered 24 hours of makeup services over one summer. …How do we bring those children to where they should have been had they gotten the services they should have gotten? That’s the question we’re supposed to ask by law.”

Some students with IEPs or 504 plans are entitled to receive “compensatory recovery services” to make up for what was lost, though there’s no requirement to compensate for every moment of lost services. The process of determining who is eligible for those services started in January and will continue throughout the current school year, says Phil Lynch, the school system’s director of special education services.

In the spring, schools began providing compensatory services, such as reading intervention, to their qualified students outside of normal school hours, and they’ll do that again this year. MCPS also paid some of its employees—teachers, speech therapists, and other providers—to reach out to parents of students who had regressed or lost services during the pandemic and set up a time to work with them. In addition, the school system directed services toward some students who were already taking part in extended school year services, a summer program that helps students with special needs maintain the skills they’ve gained, Lynch says.

“In order to get these specialized recovery services, parents need to be very vocal,” Weinfeld says.

Francis Wilcox worried about his son’s lack of attendance during virtual learning, and wondered if the fifth grader would ever catch up on what he missed. The teacher was engaging, and the paraeducators worked one on one with students as needed, but it wasn’t enough. Every morning, Wilcox and his wife were gripped with the will-he-or-won’t-he-do-it dread around 8:30 a.m., when their son—who has ADHD and other challenges—had to log into class. “You start fearing the longer term repercussions,” Wilcox says. “Is this something he can bounce back from? If he does, how long will it take?” But when school reopened in March, the boy got up on time, greeted the bus driver and went to class without complaint. He’s qualified for 50 hours of compensatory services through MCPS—to be implemented within two years—for math, reading, writing, social emotional learning, and speech-language and occupational therapy. “I’m feeling positive about the future,” Wilcox says.

For the school system, the challenges go beyond providing compensatory services for students with special needs—some kids had been waiting to receive in-person assessments to determine if they qualified for an IEP. MCPS temporarily opened regional centers at three middle schools in December 2020 to help handle the backlog of students. “The backlog is shrinking, and we were able to return to our normal process for completing assessments,” Lynch says.

It’s critical that schools move quickly to assess as many students as possible, says Vincent Culotta, a neuropsychologist in Columbia, Maryland. “Delay of services means children can miss important developmental windows as they wait,” he says. “That could have ripple effects for years.”

Michael Eig, a special education attorney in Chevy Chase, says there’s an enormous need to reevaluate students this year in light of the pandemic. Some students who were at risk before schools shut down in March 2020 may have developed issues in the interim, he says. Other kids who had previously received specialized instruction may have developed more severe problems. “We need to figure out where the child is now and what he or she needs,” says Eig, who is the father of Kate Eig Hurwitz. “Some kids may have lost three months and they can make it up in a week. Some may have developed a different profile of needs.”

In February 2021, some parents were so desperate to get their kids back to in-person learning that they made their case in a video that aired at a virtual special education town hall hosted by the Montgomery County Council of Parent-Teacher Associations. The mother of a first grader with Down syndrome spoke about how her son used the speech output device that helps him with his language delays to write the words lonely, angry, and school, and then the names of his classmates. The video captures him cross-legged on the floor, not far from his laptop, wailing. His mom said virtual learning had taken an emotional and financial toll on her and her husband—they both worked and had to hire an outside tutor and someone to oversee their son during the day. Another woman talked about how her son, a “good-natured guy” who has Down syndrome, developed a bald spot on the top of his head after picking at his hair. “It’s really hard for him to cope,” she said.

Joette James, a pediatric neuropsychologist in Chevy Chase, says she’s seen many adolescents develop serious depression during the pandemic, often an exacerbation of existing issues. She’s also had older patients bring blankets, stuffed animals or other “transitional objects” to her office for comfort. “I usually see that happen with 3-year-olds, but to have an 11-year-old bringing a stuffed animal is unusual, especially in this super savvy Internet age,” James says.

A Montgomery County mom says the pandemic forced her to rethink what’s best for her 10-year-old son, who was born with spina bifida. The boy is paralyzed from the waist down and uses a manual wheelchair. He struggles with several learning challenges, including ADHD and a math learning disability. In the past, his IEP allowed for an occupational therapist, a speech pathologist, a social skills “lunch bunch” with the school counselor, and a full-time aide to help him ride the elevator and keep him on task. Because his handwriting was weak, he was allowed to dictate to his aide the written responses to his graded work. He received many of those services virtually when his public school went remote, and for the most part he enjoyed learning from home. His mom sat by his side and pushed him to type more and stop using his aide as a crutch—and he did.

“But I also had a front-row seat to how much learning wasn’t happening,” she says. “It was tough to see that there was math being taught and he’s 100% not getting it.” Halfway through the boy’s fourth grade year, when there was no guarantee that county schools would reopen in the fall of 2021, his parents made the decision to put him in a private school that offers smaller classes for kids with learning disabilities. “We were planning on looking at private schools for middle school,” his mother says, “but [the pandemic] accelerated the process.”

Jenna Goldblatt says she’ll consider homeschooling her son Bryce if the pandemic takes a turn for the worse and schools revert to virtual learning again. “We would be able to make a schedule for Bryce that’s more adaptive to our lifestyle,” says Goldblatt, who runs an online candy cake business and was “up all hours” trying to fill orders with her husband and her older son, Bennett, after spending her days dealing with Bryce’s remote learning needs.

A seventh grader at Lakelands Park Middle School in Gaithersburg, Bryce has a rare chromosomal disorder called Phelan-McDermid syndrome. He is nonverbal and physically challenged. His mom describes him as a kid “who wakes up smiling and goes to bed smiling.” He’s gesture oriented, offering his shoes when he wants to go outside or the pool pass when he wants to swim. He makes sounds and words that his parents understand. “Bryce makes himself known,” Goldblatt says. His family tried to spend as much time outside the house as possible to keep him entertained. They walked the neighborhood, went shopping, visited his grandmother a block away, took drives to nowhere. Still, Bryce got depressed, confused and frustrated, acting out in ways his family had never seen before. “He’d throw things and push,” Goldblatt says. “The thing that was the worst for all of us was the moaning.”

Whitney Ellenby of Bethesda says her son, Zack, 20, who is on the more severe end of the autism spectrum, started “raging and screaming” when she told him that school had shut down. But when she had the chance to send him back to Walt Whitman High School for in-person learning, she considered it only briefly. She wanted to know if he would be able to tolerate a mask and abide by the distancing rules, but then she heard about the changes to the cafeteria routine, and that was a deal breaker. The hot lunches would be gone, the usual crowd of kids would be missing. “If he’s angry, he can be a risk on a regular day,” Ellenby says. “With COVID, he could get angry and rip off his mask, rip off someone else’s mask, pinch or bite somebody.”

In normal times, Zack loves being a part of Whitman’s Learning for Independence (LFI) program, which offers academic classes, teaches him self-care skills, and takes him on community outings. He rotates through different internships, like the one he had at Petco. But once school went remote, Zack refused to participate in virtual classes. Ellenby wasn’t concerned about academics—the way she saw it, she had bigger problems. “I was more worried about his real-life skills,” she says. Her son is not headed for college, and likely will receive a certificate when he graduates. “We’ve lost a critical year in which he might be trying out car washing or landscaping or other potential jobs for the future. Now I have less time to figure out what this kid is capable of doing,” says Ellenby, the founder of Autism Ambassadors, which hosts recreational events for children and adults with autism. “As the saying goes, you fall off the cliff at 21. Nobody is holding your hand or guiding your child.”

In May, Ellenby hosted a gathering at her home for a group of 10 moms who have children on the autism spectrum. Several of the women said they’d started taking antidepressants at the height of the pandemic. “There’s still a fair amount of post-traumatic stress disorder out there for kids and mothers in particular,” she says.

Remote learning has been tough on educators, too. Brooke Supinski co-teaches an LFI class at Whitman with about two dozen students ages 14 to 21. Some can type; others need hand-over-hand guidance when writing. Some need manipulatives, such as hand counters for math, special writing utensils, or slant boards that position paper at an angle. “Virtually, we had to give the same lesson to all those students,” says Supinski, who teaches English and science, “and they don’t have all of the things at home that we have in the classroom, or [they] don’t have someone sitting next to them to do those things with them.”

When schools reopened last year, 19 of the students in her class came back to the building. Most had made progress on the goals set in their IEPs. But a few never showed up, online or in person. “It was those few cases that ate away at me,” Supinski says. “I had to keep reminding myself that the situation was out of my control. But as a teacher, it was a hard concept to grasp because my entire purpose is to reach kids, support them, and help them make progress.”

Supinski managed some of her students’ IEPs, so she kept in closer touch with their families. She learned that one student initially wasn’t coming to class in part because his mother was an essential worker and couldn’t help him track his online schedule. Another didn’t come back to school because he was distraught by the disruptions in his routine. “I don’t think I’ve ever doubted myself as a teacher more than I have this past year, even though I was doing everything I could possibly do,” says Supinski, who has been teaching for four years. “We’re starting this year with a fresh slate, with open eyes and an open mind.”

Laurie Reyes, a Montgomery County police officer who runs a unit that fosters police relations with the special needs community, says she’s noticed that many parents are stretched thin in patience and resources. Her unit has seen an “uptick” in calls since the pandemic started, she says, with most involving children and teens who have autism.

One mother called police four different times and asked them to track down her 17-year-old son, who is on the autism spectrum, after he left the house upset, Reyes says. One time, an officer found him about 4 miles from home, walking along a busy road. “He was a young man who was trying to navigate his independence at a time when his life had no structure,” Reyes says. “But he didn’t have the coping skills of a neurotypical teenager.” Another mom and dad contacted Reyes because they were worried that they might lose their temporary housing if the neighbors complained about their son. “He was a very large and loud young man, and he had lost a lot of outlets to release his energy, so they were worried about excessive noise,” Reyes says. It gave the parents peace of mind to know that the police would support them, she says, maybe with a letter to the landlord or a talk with a neighbor.

From left: Tom, Madeline, Sam-Henry and Amanda Kornfield at home in Rockville. Photo by Lindsey Max

It was an incident with a neighbor that led Amanda Kornfield to put her son, Sam-Henry, in a residential facility last November. She’d resisted the move for years, convinced that he was too young, that he would hate her if she did it. Sam-Henry is “severely autistic” and has an explosive temper when he’s agitated, says Kornfield, a Rockville resident. Last school year, he was unable to participate in online classes for more than 20 minutes at a time at Marcia D. Smith School in Gaithersburg, which he used to attend year-round. His outbursts escalated from about once a month to several times a week. “For me, it was a lot of hitting, kicking and punching,” Kornfield says. Sam-Henry, now 18, is 5 feet, 3 inches tall, but with his adrenaline pumping, he’s powerful. His father, Tom, can contain him. But without Tom as a buffer, Amanda would sometimes lock herself in her bedroom during Sam-Henry’s rampages. “He punched holes in the wall. He broke windows. He broke our front door and almost ripped it off the hinges,” Amanda says. “Every time an incident would happen, my husband would say, ‘Look, we can’t keep living this way.’ But I kept saying: ‘We’ll make this work. I can’t let him go. ’ I felt immense guilt.”

If Tom went for a run, he’d worry about going too far from the house. “When [Sam-Henry] was upset, when things weren’t going in a predictable fashion for him, there was no telling what he would do,” says Tom, who works for a health care consulting firm. He worried about his wife’s mental health. Sometimes, after a particularly bad encounter with her son, she’d cry hysterically and tell her husband that she couldn’t handle it anymore. Sometimes Sam-Henry would say, “Mommy sad.”

To try to keep the peace, Amanda and Tom did anything and everything Sam-Henry wanted, exactly the way he wanted it done. They parked their cars in a certain spot in the driveway, and one car had to be touching the gate of the fenced-in backyard. For four months, they got him McDonald’s for dinner. They bought the same items every time they went grocery shopping, including large packs of trash bags. And they kept the trash cans out on the street all week. A neighbor complained to Rockville officials, but the city gave the family a pass when the parents explained the situation.

Sam-Henry’s younger sister, Madeline, steered clear of the chaos by holing up in her room. “I didn’t mind it. I didn’t actually listen to Sam-Henry half the time,” Madeline, 14, says. “Fun fact: He never gets violent with me. He’s very overprotective of me for some reason.” Madeline is a smart and creative teen with a passion for Dungeons & Dragons and for causes affecting the LGBTQ community, her parents say. She, too, is on the autism spectrum, which affects her ability to navigate relationships and read body language. But unlike the Kornfields’ son, she thrived in the virtual learning environment.

“It was kind of easy,” says Madeline, who attended The Auburn School in Silver Spring, which serves kids with social and communication challenges. “I knew what to do. Sometimes I would just mute myself and play video games or watch YouTube. No one would know.” But she often heard her mom crying. “That scared me,” she says.

Amanda says she reached her breaking point when Sam-Henry had a serious run-in with an annoyed neighbor. “I realized that not only am I not safe, but he, too, is in danger in the community,” Amanda says. “That’s when I decided he needed to leave.” Kiana Walcott, a home-based therapist who has been working with Sam-Henry for three years, advised the Kornfields to frame the move as a transition into college and throw him a graduation party. Walcott put together a “social story,” a visual and written presentation of what he could expect. In it, she included photos of the townhouse he’d be living in with a roommate and the school he’d be attending in Brookeville. In November 2020, Sam-Henry moved into his new home.

The transition was rocky because the program went into lockdown the day after the move, which the Kornfields weren’t expecting, so the family couldn’t see Sam-Henry until four months later, on his 18th birthday. Now they take him on outings every week and chat with him regularly on Zoom.

Madeline says the house is much quieter without her brother, and she likes it that way. She figures it’s tough for outsiders to grasp the complexities of their relationship. “I barely interacted with him, but I very much still love him. He doesn’t understand that,” she says. “It’s complicated. It’s kind of a struggle. You’ve got to live with a brother like him to understand.”

Tom says he and his wife are confident that they made the right decision. “People reading this article might think we’re horrible people for sending him off,” he says. “But the reality is he’s in a place where he’s pretty happy, and that makes me happy.”