Outbursts, panic: Lockdown ordeal for special-needs families
Paris — After weeks of France’s strict lockdown, Mohammed, a 14-year-old with autism, took a pickax and started hitting the wall of his house, hoping that he could finally go out.
His explanation: “Too long at home, too hard to wait.”
Coronavirus lockdown is proving a particularly trying ordeal for children with disabilities and their families who are struggling to care for them at home now that special schools and support programs have been shut down.
Mohammed hasn’t picked up the ax again since the incident last month, his father Salah says with relief. But his son still gets exasperated, and says, “I want to break the house down.”
The family, like others who spoke to The Associated Press about what they’re going through, spoke on condition they be identified by first name only, out of privacy concerns for their children.
Making matters worse, Mohammed’s mother, who works in a nursing home, has been on sick leave after testing positive for COVID-19. She had to live for weeks isolated on the top floor of their house in the Paris suburb of Mantes-la-Jolie, and was forced to keep distance from her family. Her health has since improved.
That was particularly hard for Mohammed, who has a close relationship with his mother.
“We kept telling him that there’s the disease. He took note. Then he tried again to go up and see her,” Salah said.
Violent outbursts, incomprehension, disputes, panic attacks: Lockdown is a shock to many children with special needs, cut off from their friends and teachers, deprived of their reassuring routine. And France’s virus lockdown measures – now in their second month and not set to end until at least May 11 – are among Europe’s strictest.
At home, Mohammed requires constant attention so that he won’t put himself in danger.
“That’s tough on him. We reprimand him, saying no. … We need to repeat and repeat,” Salah said. The father admits to his own fatigue, working at home as a telecoms engineer while also taking care of his two other sons, ages 12 and 8.
Salah knows how to detect signs on Mohammed’s face when he is under too much pressure and may get angry: “I don’t let things get heated.”
Mohammed’s teacher at the Bel-Air Institute near Versailles, Corentin Sainte Fare Garnot, is doing his best to help.
“If you remove crutches from someone who needs them from one day to the next, it gets very complicated,” he said.
“The feeling of loneliness and lack of activity can be very deep” for people with autism, he said. Mohammed calls him several times a day.
Aurelie Collet, a manager at the Bel-Air, which provides specialized educational and therapeutic services for dozens of children with different types of disabilities, said some teenagers just didn’t understand the lockdown rules at first, and kept going out. Others who used to be well-integrated in their class turned inward, isolating themselves in their bedrooms.
So the staff developed creative tools to keep communicating and working with the children, including through social networks, she said.
Thomas, 17, and Pierre, 14, brothers with intellectual disabilities who also go to the Bel-Air, are similarly destabilized by lockdown.
“I feel worried about how long the lockdown will last, what’s going to happen next”, Thomas said. The teenager has lots of questions about “how many people will get the virus, when the epidemic will stop.”
At first, their parents recalled, the boys acted as if they were on vacation, playing all day and calling their friends. Then the family, which lives near Versailles, west of Paris, organized activities to keep their lives more structured.
Another big concern for Thomas is his future, as the internship he was planning to do this summer is likely to be postponed.
His younger brother Pierre says he’s having more nightmares than usual, adding that the lockdown is also prompting more family quarrels.
Pierre especially misses the gardening he used to do at the Bel-Air, so he has planted seeds in pots to grow radishes.
Under nationwide restrictions, the French can only leave home for essential services, like buying food or going to the doctor, and must stay close to home. Physical activity in public is strictly limited to one hour, and within a nearby radius. Police routinely fine violators.
Recognizing the burden this places on people with autism, French President Emmanuel Macron announced in early April an exception that allows them to go out in places where they are accustomed to go, taking the necessary health precautions but with no limit of time and distance.
The challenges are familiar to millions of families around the world. Across the U.S., teachers are exploring new ways to deliver customized lessons from afar, and parents of children with disabilities are not only home-schooling but also adding therapy, hands-on lessons and behavioral management to their responsibilities.
Salah has started again to take Mohammed do some biking outside, something he used to do before. “This is like a safety valve to him, he needs it. … We’re having a hard time following him, he’s going ahead, happily shouting,” Salah said with a smile in his voice.
Sainte Fare Garnot is helping the family to find concrete solutions. Because playing soccer with his brothers in the garden has proven difficult for Mohammed because the rules of team games are too complex for him, he suggested that the three boys instead take shots at goal in turn.
France is still playing catch-up with some developing-country peers in terms of educational opportunities for children with autism spectrum disorders, and teachers fear that some will also have to spend months relearning skills they may have lost during the lockdown period.
The president has announced that schools will be “progressively” reopened starting from May 11, but authorities have not provided details yet about special-needs children. France counts more than 350,000 school students with disabilities, including 70,000 in the special education system that includes the Bel-Air.
The uncertainty is specially hard for young people like Mohammed. “I know he will ask me again,” his teacher said. “‘When is it ending?’”