Living under quarantine, spending most of the day at home, is not easy for many. Home-based quarantine is particularly difficult for families with children or adults with physical or mental disabilities. This is mainly because such families have now lost external support.
On April 2, Autism Awareness Day, Anna Kuk talks about how the quarantine is affecting the life of her “special” daughter and her whole family.
“Everyone died at the school. I don’t talk to dead people,” my daughter Lisa shouted when I handed her the phone. The teacher called to ask how Lisa was doing after the school was closed for quarantine. Ten-year-old Lisa has autism, speech and language delays, and learning disabilities. At first glance, my daughter does not look different from her peers, but when you ask her something, there is a high probability that she will not answer, as if she has not heard that you are speaking to her. She often doesn’t understand social norms: she can hug and kiss a stranger, especially if it’s the mother or father of one of her classmates or friends of her younger sisters. She may laugh when she accidentally causes someone pain. It is difficult for her to talk about her feelings: even when she is crying and in pain, she will claim that she is “happy” and that everything is fine.
Liza hears everything that is said about her, in her presence, and around her. But what she understands from what she hears, and what conclusions she draws from it, often remains a mystery or is discovered entirely by chance. So, after Lisa’s exclamation that everyone in the school died and she doesn’t talk to dead people, I understood Lisa’s conclusions about the situation with the coronavirus: she heard or read that you can die from the coronavirus and came to the logical conclusion that if the school was closed, that means that everyone there died. For me, Liza’s conclusion came as a complete surprise: she knew that the school was closed because of the quarantine, and on the last day of classes she even seemed happy to stay home. But as it turned out, Liza had her own version of the reasons for the quarantine, and for several days she lived alone with these thoughts.
“The main support now comes from our friends, who delight Lisa with new Lego sets and fun toys. I tried to reassure Lisa that everything was fine, that everyone was alive and well. We had a video call with several classmates (five minutes of conversation took an incredible emotional toll on Lisa as she had never seen them on a smartphone screen before). And yet, the thought of possible death continues to haunt my daughter. Almost every day I hear her say, “I am brave. I don’t have to die.” Children and adults with autism often take everything literally. Shocked by the phrase “everyone died,” I wrote to my friend, the mother of a boy with high-functioning autism. She in turn told me her story of that day. The boy, let’s call him Michael, like many children with an Individualized Education Plan, was allowed to continue attending school even after it was officially closed during the quarantine (Lisa was not offered this option as the principal decided to close our special school completely). So Michael overheard his parents talking about the fact that during the quarantine there would only be a “skeleton staff” at the school, which literally translates to “skeleton teachers” in English.
When the school closed, Lisa experienced a developmental regression due to stress. “Poor Michael,” wrote a friend, “not only is there this coronavirus, but they are going to teach him skeletons in school. How could I say such a thing?” Needless to say, Michael flatly refused to go to school, and it took a lot of effort to convince him otherwise. A few days later, however, the school itself asked him not to come back, as measures to combat the coronavirus were stepped up, and now only the children of key sector employees – doctors, police, and salespeople – who are supporting the vital functions of the country at this difficult time and cannot work from home remain in British schools. But let’s go back to the conversation with the teacher who is not dead, but is now forced to stay at home and figure out ways to entertain and educate our children remotely (unfortunately, I can’t say that this process is going well). When asked, “How is Lisa?”, I had to answer honestly, “Not very well”. Even for normal children, let alone adults, the transition to life in quarantine is challenging: giving up everyday habits, personal communication with colleagues, lunch meetings, trips to the gym or tennis court.
Anna is worried that no one will be able to provide professional help for her daughter Lisa because all of the medical staff’s efforts are focused on fighting the coronavirus. And imagine how difficult it is for a child with autism to experience all of these changes, who generally has difficulty with any change, even seasonal clothing changes, has difficulty understanding this world, and finds support in a clear schedule and predictability of their usual daily routine. Liza’s comfortable, predictable world began to crumble a week before the quarantine began, when, one by one, all after-school clubs were canceled – not only for Liza, but also for her younger sisters, whose schedules are extremely important to Liza. Teachers, following government orders, began calling in sick at the slightest suspicion of coronavirus symptoms, the school cook fell ill, and Lisa was left without her favorite hot lunches. As a result, the daughter started sleeping very poorly and couldn’t calm down until 1 a.m. or sometimes even later.
In the early days of quarantine, Lisa would only come alive during walks. When the school closed, although Lisa was prepared with special visual stories, she experienced a developmental regression due to stress. Only recently, together with the teachers, I was able to teach her to express her thoughts in written form. Now she angrily refuses to write a word if I cannot decipher her unclear speech. Self-care skills began to disappear: for the first three days, my daughter did not go to the toilet – a sign of immense stress – and it took a lot of effort to convince her to at least wash up and change clothes. Liza only came alive during the first days of quarantine when we went for walks, but due to the government’s measures, we were unable to go to our favorite playground and are now forced to walk in the forest, which requires a car ride.
“For families with children or adults with developmental disabilities, quarantine is a real challenge.” We explain quickly, simply, and clearly what happened, why it matters, and what happens next. эпизоды – Episodes End of Podcast Advertising Story The particular difficulty for my family during the quarantine is that I live alone with three daughters, so for over a week now, we have been spending all of our days together without the possibility of taking a break from each other. On regular holidays or weekends, I could get a babysitter for the kids and go out for a while to relax, or send Lisa to camp for a few hours to spend some time with my younger daughters, or vice versa – organize activities for my younger daughters and spend time with Lisa. Now all these ways are closed, we can only communicate in person. By the end of the first week, the middle daughter, eight-year-old Kati, began to lose her nerve. Being at home all the time and not being able to relax from each other causes stress and dissatisfaction in many families. Lisa is always very loud (singing songs non-stop, repeating phrases from cartoons), while Katya, on the other hand, has a heightened sensitivity to loud noises, and after another walk she just exploded in the car: “Lisa, why can’t you be quiet, I have a headache.” Lisa can’t be quiet, she needs vocalizations, they help her deal with her anxiety. Katya, who lost control, suddenly declared that if she couldn’t be quiet, she would stop washing her hands and get infected with the coronavirus. Of course, this promise caused a wave of protest and aggression from Lisa, and I had to break up the fight.
Another problem that suddenly arose was finding products for Lizin’s gluten-free and casein-free diet. When I went to buy Liza’s gluten-free spaghetti a few days before school closed, it turned out that not only the toilet paper had disappeared from the shelves, but also this product, which was suddenly in short supply.
Not only toilet paper, but also gluten-free spaghetti has disappeared from the shelves of English supermarkets. Not only toilet paper, but also products that were not perceived as scarce by many, such as gluten-free spaghetti, have disappeared from the shelves of English supermarkets. I can’t even imagine how I would go to the store with my girls in today’s reality, where you have to stand in line for an hour to get into a supermarket, and then you have to keep a strict two-meter distance from other shoppers. Fortunately, our friends have taken over the weekly grocery shopping for us, and I haven’t been to the supermarket during the quarantine period. For the first time while living in the UK, I remembered what it means to “get things through connections” – my friend’s son, who currently works part-time at a large grocery store, managed to get Lisa some scarce macaroni. Judging by everything, it looks like we will have to stay at home in quarantine for a few more months. Of course, we’re trying to take all precautions, but to be honest, I’m more worried about the mental state of my autistic daughter than I am about the risk of contracting the coronavirus. I’m afraid that no one can provide professional help for Lisa right now, because all the medical staff’s efforts are focused on fighting the coronavirus, and teachers and social workers can’t come because of the risk of spreading the virus. Last week, our close-knit community of parents and children with developmental disabilities was devastated by the news that a 19-year-old girl with autism took her own life due to the fear of being confined within the four walls of quarantine.
In Britain, all schoolchildren have been switched to distance learning. Only the children of “key” workers, including doctors, nurses, journalists, and police officers, can attend school. I read stories from adults with autism about the incredible effort they have to make to go to the store or limit themselves to one walk a day. The main support now comes from our friends, who delight Lisa with new Lego sets and fun toys. I need to create a new support for Lisa – a clear daily schedule that she will follow once she gets used to the new lifestyle, and of course, no talking about death. Wish us luck.