Normally, parents and kids know how to get ready for the new school year. Buy notebooks and lunchboxes. Pick out a cool backpack. Shop for clothes. Fill out some paperwork. But in this pandemic year, there’s one more thing everyone will need: a whole lot of flexibility.
COVID-19 means everything about school is subject to change. Plans are being put in place, but they are also fluid. Some schools are bringing students back to the physical classroom – with masks and social distancing procedures. Some students will learn virtually at home. Still others are doing a hybrid schedule, leaving parents and students to figure it out and make adjustments.
The challenges have an added dimension if a child (or a parent) is also managing a rare or serious health condition. In particular, kids and parents who have immunodeficiencies will be especially concerned about how to stay safe.
We asked the experts four questions about how to approach this school year ready to roll with it:
In stressful times, just telling someone to “be patient” or “be flexible” isn’t enough. How can parents anticipate the stresses associated with this school year and be better prepared?
Lorrie Gray, a life coach in Los Angeles who focuses on people with chronic diseases, homeschools her two children while coping with chronic health issues herself. Her advice for families is to prepare for a variety of scenarios.
“Some days are going to go smoothly and some will be a total train wreck. As a person with chronic health issues I always have three different plans: one for good days, one for typical days, and one for when everything hits the fan,” she said.
Parents and kids will feel less stressed if they have a backup plan that ensures they can stay connected to school from home, said Dr. Farzanna Haffizulla, chair of the Department of Internal Medicine at the Dr. Kiran C. Patel College of Osteopathic Medicine in Florida.
“Learn how to switch to using your phone's hot spot in case of internet outages. Always write down the phone call-in audio option for your child's online class in case no internet is available,” she said.
Dr. Haffizulla also encourages parents and kids to sit down together and watch the Centers for Disease Control and Prevention family safety videos.
Bonnie Nasar, a registered dietician from New Jersey, has two children with rare diseases. One child will be learning remotely and the other will be attending school part-time under a hybrid online and classroom model. She’s concerned about the virus. And she worries about the products used to kill the virus.
“My kids have chemical sensitivities, so I need to know what cleaning and sanitizing products the school is using,” she said.
She also urges parents to be proactive in learning how the school nurse’s office will be set up. Will they separate kids who go to the nurse’s office because they don’t feel well from kids who have ongoing medical issues not related to COVID-19?
Younger kids and older kids have different needs. How can parents address the coming year with a child who’s 6 versus a child who’s 16?
When gearing up for this school year, consider both your child’s personality and their age, Gray said.
“For younger kids or those with fewer self-management skills, you may need to provide more structure. Older kids, or those with better self-management skills, may need very little oversight,” she said.
Older kids respond better to a plan built through collaboration where the child feels a sense of ownership rather than simply being told what to do.
“You may allow them to choose which order subjects are done or where they sit when they do their work,” she said.
For both groups, set short-term plans and regularly assess how it’s going, rather than trying to plan the entire year at the onset.
“Be willing to try something, evaluate, and adjust as needed. We can't always predict what will work until we try it,” she said.
Dr. Haffizulla, the mother of four school-age children, said older kids can help younger siblings with homework and play time.
Earlier this year, several rare disease experts said people who live with rare and chronic illness have what it takes to face the difficulty of the pandemic. They already know how to deal with limitations and roll with it. What advice would you offer families going into the pandemic school year while also managing a rare condition?
The unknowns in the upcoming school year are a bit like the uncertainties inherent in managing a chronic illness, Gray said.
“In both cases, the best course of action is to wake up, see how things are looking for the day, and make a plan from there. Sticking to a rigid schedule without honoring your body's signals is detrimental when you have chronic health issues,” she said.
Nasar said children with rare diseases learn to live with uncertainty at a young age. Many, out of necessity, have learned to adhere to healthy habits.
“Our kids have discipline, because they have to refrain from certain activities in order to stay healthy. They understand and accept when the things they want to do aren’t always safe to do,” she said.
Keep that discipline during the school year when it comes to getting routine care and addressing medical needs that come up, Dr. Haffizulla said. Stay alert to new developments in your child’s disease area, too.
“Speak to your doctor's office about telemedicine options, stock up on needed medication and ensure you stay abreast of the latest advances in the rare condition your child is diagnosed with, she said. “This may include early vaccination options for some children with rare diseases. Ongoing clinical trials for which your child might be eligible should always be on your radar.”
How can parents be ready for the school year’s challenges, but also try to frame things in a positive light for their kids?
Gray suggests visiting Mister Rogers’ neighborhood for inspiration.
“As Fred Rogers says, ‘All emotions are mentionable and manageable.’ It's important to validate and process whatever we are feeling. We can be disappointed and grateful. We don't have to pick one or the other.”