Father looking at computer screen


Why Community Matters More Than Ever For Parents Of Kids With Special Needs

May 5, 2020

I cried a few times that first week after coronavirus hit in earnest, when trips were cancelled, schools were closed and in-person supports slid away. We spent much of 2019 with a child in crisis, finding a sliver of support and help at the outset of 2020 — then the pandemic happened. It levelled me mentally for a few days as I wondered how we’d layer this new reality onto our existing situation.

After that first few days, I did what I often do when grappling with a new situation or searching for answers: I drew my community close and held on tight.

I’m still doing that, some days white-knuckling it, day by day. Studies have shown that peer supports reduce stress for parents of children with special needs. Now, with COVID-19 and this new added layer of stress and worry, plus online schooling, parents like me are seeking out and engaging in virtual communities more than ever.

'Hey, you are not alone.'

Jessica Moran is mom to Maggie, who has been diagnosed with autism: "Community and support is the biggest part to making having a special needs child manageable. Given we have zero [outside] support right now due to COVID-19, and we are tasked through not only working through our child's special needs, emotional and mental well-being but also schooling ... it's really, frankly, near impossible."

"'I've resorted to just escaping to a hot shower to cry when I'm at my breaking point.'"

"Our daughter isn't sleeping a wink at night due to her anxiety from the situation and is absolutely unreasonable to deal with during the day. To top it off, I am supposed to be homeschooling her, when all I can do is cope hour by hour. I've resorted to just escaping to a hot shower to cry when I'm at my breaking point."

Jessica says connecting with other special needs parents during COVID-19 is helpful, even when it’s just to vent, or say: "Hey, you are not alone."

Susan Herrfort is mom to Christy (18), who has FASD (fetal alcohol spectrum disorder): "This pandemic has brought our local [Facebook] group tighter together. I feel more connected to the group in the last month than in the years before. People are rising up to support each other in new and creative ways and that makes the island feeling dissipate."

Some days, I am not sure even Facebook genuinely understands how vital Facebook communities are for patient groups and parents of kids with special needs. I found they are the fastest way to connect globally with other parents who are feeling disconnected, overwhelmed and anxious too. When I need to vent or I don’t know where to turn, or am unsure of what resource or local agency to approach for support — I reach out to my parent support groups on Facebook. Someone always has a solution, or an idea to help.

Online schooling, 'How hard can it be?'

Right now, parents of kids with special needs are struggling in a million different ways. Maybe they are both essential workers and now also are schooling special needs kids during a pandemic. Some are single parents in this, at the end of their rope with kids who could be acting out, not sleeping or feeling anxious.

Tiffany Steadman-Collins is mom to a son in Grade 8 with autism spectrum disorder: Tiffany is a teaching assistant, but — "My kids don’t see me as a teacher. Well, I am a teacher, but not their full-time teacher. So, I feel tied down having to do lessons for both my Grade 2 and my Grade 8 [kids]."

"'My kids don’t see me as a teacher.'"

"[My son's] not doing well with online learning at all. Reaching out to people, I am often met with, 'Well this is what you do for a living. How hard can it be?'"

Tiffany says she’s sad her son will probably not get a Grade 8 graduation ceremony now either. For many, that might seem like a small thing. But for parents of children with special needs, who have fought daily to even get their kids to school, or to reach a milestone that seems to come so easy to many others, this is gut-wrenching.

A place to be understood

Erika Moyer is a Canadian mom to a daughter with special needs, currently living in Florida: "Community always matters more than anything within the special needs world. At times like these, when part or all of your supports come crumbling down, you realize what a fragile structure you regularly lean on."

"Right now, I go from feeling crazy to feeling overwhelmed to feeling optimistic or depressed and scared. ... At times, it feels like everything we have all worked towards in the last five years is coming apart. I feel so worried about the long-term effect on [my daughter's] mental health and have no one that completely understands that outside of this group of special needs parents."

In the last week alone in the virtual communities that I'm part of, I have seen: Hey, can you drive by our house and honk your horn at 2 p.m. for Justin’s birthday to show him people still care and haven’t forgotten? Or: Does anyone know where I can find gluten-free flour during COVID-19? And: My teen with special needs sneaks into my bedroom several times at night to check that I am still breathing. How can I reassure her?

Right now, there are children with special needs who may be regressing, struggling or having trouble sleeping. When you're a parent stumbling through the darkness searching for a light switch, sometimes empathy and kindness look like those three little dots on a screen followed by: "I see you. This is hard. I am sorry. Maybe this could help."

Article Author Paula Schuck
Paula Schuck

Read more from Paula here.

My name is Paula Schuck and I have been writing professionally for over 20 years. I am a mother of two daughters, and I am a fierce advocate for several health issues. I am a yoga nut, skier and content coordinator for two London, Ontario, trade magazines. I have been published online and in traditional magazines and newspapers including: Today’s Parent, The Globe and Mail, Kitchener Record, London Free Press, trivago.ca, Ontario Parks blog and Food, Wine and Travel magazine.

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