Tilley Creary has really come to understand stress, these past few months. The Toronto-based married mother is parenting two boys, ages eight and 10, the youngest of whom has Autism Spectrum Disorder (ASD) and would typically have language and communications supports through school. In pre-pandemic times, he also had one-on-one support with a dedicated educational assistant (EA). But since the shelter-in-place directive due to COVID-19, there has been no school structure and no professional help.
Creary’s youngest son is “the happiest and most loving kid you’ll ever meet,” Creary told HuffPost Canada. But the change to his daily schedule has been difficult for him to grasp. The fact that his specialized school supports are once again up in the air (as they are at the end of every academic year), is an extra worry for his mom and dad.
While every Canadian parent currently has anxieties around the uncertainties of childcare, schooling and the upcoming fall term, for those who have kids with special needs, the pandemic can make the challenges even more overwhelming. “I would love for supports to remain in place once they are given,” said Creary. “Every year I have to hope and pray that the EA in my son’s school doesn’t get reassigned or cut out all together.”
“We’re just hunkered down, the two of us, trying to keep sane. It’s a bit overwhelming at the moment and I worry about the isolation Knox and children like him will endure.””
The self-isolation imperative has been weighing heavy on these parents. In Creary’s case, her husband works outside the home, so she’s worried both about his safety and well-being and that of her boys, and she’s doing much of the hands-on work of parenting solo.
While both of her sons have needed more from her, with the pandemic creating so much uncertainty, Creary puts in extra efforts to help her child with ASD feel secure.
As is typical of children on the spectrum, her eight-year-old is most comfortable with a regular routine; something that is not always possible in these times. He also has sensory sensitivities, so she goes to extra efforts to ensure he’s not overwhelmed, by modifying the family’s activities and using things like noise-cancelling headphones to lessen sound triggers. She has explained to her son repeatedly, why they’re not leaving the house at this time, but it’s a difficult concept for him to grasp
“My anxiety is definitely up these days,” she said. “Normally I’m at about a six or seven out of 10, but now I’m a solid nine constantly.”
Creary is not alone in feeling the extra pressure. Parents of kids with a range of developmental and physical disabilities have been reporting challenging and even untenable caregiving situations, since the pandemic took hold. Tanis Miller is a mother of four whose 16-year-old son, Knox, has multiple diagnoses, including quadrispastic cerebral palsy, microcephaly, both cortical visual blindness and optic nerve hypoplasia, bilateral hearing loss and brain damage. Accessing extra support for Knox can be a struggle at the best of times, and now with social distancing restrictions, Miller and her husband are taking care of all of his needs around the clock, without respite.
“We spend a good chunk of our day on his basic needs. His feedings takes about a half an hour, three times daily. He gets tastes of soft foods but because he can’t protect his air way and hasn’t figured out how to chew he is mostly tube fed a liquid diet,” said Miller, adding that keeping her son somewhat limber is also a big task. “We do stretches in the morning and the evening, about forty five minutes a time, depending on how cooperative he wants to be.” And then there’s medication, which is administered throughout the day, and the twice-daily care of Knox’s stoma (the hole in his abdomen where his gastric feeding tube apparatus is inserted).
Miller is keenly aware of the potential effects of COVID-19 on a medically fragile kid like Knox, and it’s worrying. To keep him safe and healthy, her older children are isolating in their respective locales, and her husband is unable to work from home during the pandemic. All this means that she is taking care of the majority her son’s needs in what is shaping up to be an indefinite period of time.
“We’re just hunkered down, the two of us, trying to keep sane. It’s a bit overwhelming at the moment and I worry about the isolation Knox and children like him will endure,” she said. On top of that, “the stress of finances and worrying about my older kids and my husband isn’t doing anything great for my blood pressure,” she adds, even though her goal, each day is “trying to keep focused on the positive.”
Dr. Yona Lunsky, Director and Senior Scientist, Centre for Addiction and Mental Health, in Toronto, told HuffPost Canada:
“Caregiving impacts both mental and physical health. One of the issues is that caregiving is a long-term activity for families and we have major gaps in services and supports, which poses a tremendous stress. Rates of depression and anxiety are higher for these parents.”
Dr. Lunsky sees parents of children with disabilities as “incredibly resourceful, creative, and hardy.” However, their own needs ― to restore their energy, connect with their partner or other significant people in their lives and get some downtime alone ― are hard to meet right now.
If you are a parenting a child with special needs and worried about burnout, as you well know, there are no magic solutions at this time. Here are some ways, however, to help reduce stress levels:
1. Ask for non-caregiving help within your social circle or from volunteer groups
In many cases, when a child requires specialized care, another family member or friend will not have the skills and knowledge to participate in caregiving. The pandemic adds an extra layer of complexity, even for those who are equipped to babysit, since we’re all minimizing contact with people outside our household. Even as provincial restrictions loosen, for some families with a medically fragile child, nothing can change until there’s a vaccine for COVID-19.
That said, loved ones can step up by doing things like grocery runs, preparing cooked meals and checking in with phone calls, so parents have a chance to talk about what they’re going through and feel seen and heard. In the longer term, friends and family can also help with advocacy, and lend their support through letters and emails to politicians and institutions, if that could help get extra support and services for your child, beyond this exceptional time.
2. Join a peer support group for parents and caregivers
At the end of the day, being able to chat with people who get what you’re going through can be a lifeline. Not having to explain, being able to vent guilt-free and having a network to advise you on resources and services they’ve accessed can help you get through the tough times. Since many of these groups have strong online networks, you can access support once your child is in bed, from your phone or home computer. Facebook is a good place to start your search, or contact a major Canadian organization that supports families of children with your child’s specific condition.
3. Check out new pandemic respite care possibilities
Some major hospitals and community health centres are responding to the crisis, by offering respite care for blocks of a few hours, to families that need it during the pandemic. One such example is Children’s Hospital of Eastern Ottawa, but it’s worth connecting with your family doctor, social worker or specialists who work with your child, to find out about local resources.
4. Know the symptoms of caregiver burnout
While the typical self-care advice may be somewhat useless to parents without a minute to themselves at this time, it’s still important to pay attention to what your body is telling you. If you’re feeling overwhelmed, struggling to sleep or stay asleep,having headaches or chest pains, becoming excessively irritable or feeling hopeless, it’s important to contact a medical professional for a diagnosis and treatment options.
5. Relax your usual standards
Do what you have to do to get a moment to yourself, whether that means giving your kid extra screen time, shifting them to an earlier bedtime or using prepared meals or delivery services, if that’s within your budget. Exceptional circumstances call for exceptional strategies, so be kind to yourself and focus on simply getting through this, from one day to the next, over any other parenting goals.
WATCH: HOW THE PANDEMIC IS IMPACTING KIDS WITH SPECIAL NEEDS