how parents of autistic kids are coping in isolation

self-isolating at home with kids during the pandemic is tough enough. now imagine you’re susan cosgrove, a toronto-based single mom, who is self-isolating at home and has three kids on the autism spectrum. the experience has left her yearning for the supports each child had in place while in school before covid-19.“my life is [being] a case coordinator,” she says. “you try to convince yourself that everything is going to be okay.”for children with neurodevelopmental disorders, such as adhd, obsessive compulsive disorder (ocd) or autism, the change in routines brought about by covid-19 has been dramatic. many have seen the carefully-maintained consistency of their daily therapy sessions and programs upended, and their access to physical fitness virtually eliminated. many are showing signs of anxiety and distress as the news outside becomes worse.“we’re seeing kids who are coping well,” says dr. melanie penner, dr. melanie penner, developmental pediatrician and clinician investigator at holland bloorview’s autism research centre, and “those who are having problems.”cosgrove’s eldest son, who is 16 and has autism, adhd and anxiety, has moved in with her parents during the pandemic so that he has more room, as well as emotional support — and she has some extra space in her two-bedroom apartment. previously, her son had moved between her apartment and that of her parents several times a week but fears of infecting cosgrove’s parents put a stop to that.she uses facetime to connect with him every day and sends over lego.“he has to be very careful about the news,” says cosgrove, adding that her son is extremely sensitive. she asks her parents to keep the tv off to prevent him from becoming overly emotional and having panic attacks. “it’s been tough for him,” she says.her youngest child, on the other hand, is missing his specialized school, which involved daily therapy, lots of exercise and school work. she’s afraid to take him outside, as he does not understand the possible dangers of touching elevator buttons or not maintaining a social distance. cosgrove says she’s had to place two mattresses on the floor for him, so he can bounce off the couch onto them while playing ball. she has also purchased a small trampoline to allow him to burn off stream.penner says those hit the hardest are kids who previously managed their symptoms with frequent movement. “it can be particularly hard in kids who have adhd — those whose bodies need to move around quite a bit,” she says.in these cases, she suggests parents without access to a green space reach out to friends or family to “borrow” a backyard for a few hours.failing that, she suggests downloading apps that provide kids with videos of fitness routines they can do indoors. and when they need downtime, they should have a location in the home where they can have quiet time to recharge and relax.another option is to have wide-ranging activities that kids can cycle through, even if it’s something to do for a few minutes at a time. and she says parents should be careful about what they discuss in front of the kids to avoid upsetting them unduly.cosgrove says that her children have benefitted from the technological links that still connect her children with their respective schools. while her oldest does his homework online, her youngest connects with his teachers and therapists who assign a variety of online activities. all of cosgrove’s children are also continuing to see their therapists and doctors through online visits, which are now covered by ohip. “we can still get our appointments,” she says. “it’s working well.”technology also provides social connections. her middle child, a daughter who has autism, adhd and ocd, uses facetime to socialize with her friends during virtual “sleepovers” to feel like she’s still part of the social loop at school, something she misses and worries about.penner says that the virtual connections currently being set up during the pandemic will likely lead to new ways of bringing together special needs families and medical professionals in the future. in the meantime, she cautions families to recognize the limitations of their child’s care.“we don’t expect parents to provide a full-time therapeutic program for their child right now,” she says. “it’s okay to take time for themselves as a caregiver.”