While the mandated shelter in place and school closures caused by the coronavirus pandemic are challenging for all families, parents of children with special needs are facing a special set of challenges. From dealing with stress and behavior changes to grappling with a new world of homeschooling, those caring for kids with special needs are seeking support to navigate this uncharted territory.
To help bridge some of the gaps, the Magical Bridge Foundation – creator of a flagship inclusive playground for children of all abilities in Palo Alto, with 11 more in the works in the Bay Area and beyond – brought together disability advocates and parents on a webinar on April 7 to share resources and ideas. A recording of the webinar can be found on the foundation’s Facebook page, where it plans to offer future online seminars. It is also gathering resources for its website.
The participants stressed that parents need to care for themselves and also cut themselves, and their children, some slack in these challenging times.
"We need to be as calm as we can and as structured as we can, maybe take more time away from each other if that’s possible. That’s OK. Cope however you can," said Shannon Des Roches Rosa, co-founder of the Thinking Person’s Guide to Autism and a Bay Area parent of a young adult with autism. "It’s really important to model good behavior under these stressful circumstances. A lot of our children are emotional resonators. They’re going to take these feelings and throw them back at you. That’s not their fault."
Parents said the current circumstances can be especially challenging for children who thrive on structure and routine, some of whom may not understand the reasons behind the shelter in place.
"Do not expect your child to take to this transition easily. Change is really hard for our kids, and for autistic people in general," Des Roches Rosa said. "We have to be patient. Be as hands off as you can with any way they need to self soothe. … You don’t want people judging you if you’re binge watching or stress eating. Don’t judge your kids on how they’re coping."
But she said parents will need to step in to provide structure for kids who need it: "Be a reliable person who sticks to that schedule and doesn’t change it. You need to be the person they trust because everything else has been pulled out from beneath them."
Parents whose children receive special services through an Individualized Education Plan may be especially at a loss as schooling moves online, either because their children can’t access or engage with lessons or because they don’t want to.
"These are unprecedented times for everybody and things are changing day to day, and your school may not have caught up with that yet," cautioned Des Roches Rosa. While her son’s school has been providing an online curriculum for two weeks, he "is absolutely not interested in it."
"We are relying on the curriculum the school has provided us, we are going as slowly as we can, and we are allowing him to say no if it’s just too weird for him," Des Roches Rosa added.
Participants in the webinar said parents absolutely have rights under the law to make sure their child’s school is providing what they need, but that it may take engaging a professional advocate or attorney if school districts are not complying.
They also cautioned parents not to be concerned about children regressing and said there are lots of at-home resources available to engage special needs children, particularly around their interests.
Deborah Vick, a STEAM educator and regional champion with the Christopher & Dana Reeve Foundation, suggested using everyday materials to create an in-home maker space, chemical reactions box with kitchen ingredients including baking soda and cornstarch, or sensory box with textured sands, doughs and "flubbers."
Mostly, Vick said, parents need to do whatever works best for their child and their family.
"Success for us may not look the same as success for everyone else," she said. "Look at what you set for your goals. … Make something that’s realistic for you and your loved ones, not what’s realistic for someone else. Go with the words: I will do it, and I can do it, and I’ll find my own way of getting there."
Participants shared the following resources for parents:
Information and Advocacy
Thinking Person’s Guide to Autism COVID-19 Resources, including social stories explaining COVID-19 to people with developmental disabilities
Activities and EntertainmentMagical Bridge Foundation’s daily noon concerts on Facebook
Bay Area Outreach and Recreation Program online fitness options