How To Keep away from Burnout When You are Parenting A Baby With Particular Wants
Tilley Creary has really understood stress over the past few months. The Toronto-based married mother has two boys, ages eight and ten, the youngest of whom has Autism Spectrum Disorder (ASD) and usually receives language and communication support from school. In pre-pandemic times, he also had individual support from a dedicated educational assistant (EA). But since the accommodation guideline due to COVID-19 there is no school structure and no professional help.
Creary’s youngest son is “the happiest, most loving child you will ever meet,” Creary told HuffPost Canada. But the change in his daily routine is difficult for him to grasp. The fact that his college grants are back in the air (as every year ends) is an additional worry for mom and dad.
While all Canadian parents are currently concerned about the uncertainties surrounding childcare, schooling, and the upcoming fall semester, the pandemic may make the challenges even more overwhelming for those who have children with special needs. “I would love if the supports stayed in place once they are in place,” said Creary. “Every year I have to hope and pray that the EA in my son’s school will not be reassigned or completely cut out.”
“We’re just curled up, the two of us, trying to keep our senses. It’s a bit overwhelming right now and I’m worried about the isolation Knox and kids like him will endure. “
The imperative of self-isolation weighs heavily on these parents. In Creary’s case, her husband works away from home so she’s worried about his safety and well-being and that of her boys, and she does much of the practical work of single parenting.
While her two sons needed more of her since the pandemic caused so much uncertainty, Creary is making extra efforts to help her child with ASD feel safe.
As is typical for children on the spectrum, your 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 lengths to make sure he isn’t overwhelmed by changing family activities and using things like noise-canceling headphones to reduce noise triggers. She kept explaining to her son why they weren’t leaving the house at this point, but it’s a difficult term for him to understand
“My anxiety has definitely increased these days,” she said. “I’m usually around six or seven out of ten, but now I’m consistently at a solid nine.”
Creary isn’t the only one feeling the added pressure. Parents of children with a range of developmental and physical disabilities have reported difficult and even unsustainable care situations since the pandemic. Tanis Miller is the mother of four children, 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. Access to extra support for Knox can be a struggle at the best of times, and now, with the restrictions of social distancing, Miller and her husband cater to all of his needs 24/7 without a break.
“We spend a good part of our day with his basic needs. Its feeding lasts about half an hour three times a day. He gets the taste of soft food, but because he can’t protect his airways and hasn’t figured out how to chew, most of the time he’s fed a liquid diet, ”Miller said, adding that hers is a big job too To keep son a little supple. “We do stretching exercises in the morning and evening, about 45 minutes each, depending on how cooperative he wants to be.” And then there are medications that are administered throughout the day and the twice-daily maintenance of the Knox stoma (the hole in his stomach, into which his feeding tube device is inserted).
Miller is very aware of the potential impact of COVID-19 on a medically fragile child like Knox, and it is worrying. To keep him safe and healthy, her older children are isolating in their respective places, and her husband cannot work from home during the pandemic. All of this means that she will take care of most of her son’s needs indefinitely.
“We’re just curled up, the two of us, trying to keep our senses. It’s a little overwhelming right now and I’m worried about the isolation Knox and kids like him will endure, ”she said. In addition, “the financial stress and worries about my older children and my husband are doing nothing good for my blood pressure,” she adds, although her goal is to “try to focus on the positive” every day. . “
Dr. Yona Lunsky, Director and Senior Scientist, Center for Addiction and Mental Health in Toronto, told HuffPost Canada:
“Care affects both mental and physical health. One of the problems is that caring is a long-term activity for families and we have huge gaps in service and support, which is a huge burden. These parents have a higher rate of depression and anxiety. “
Dr. Lunsky sees parents of children with disabilities as “incredibly resourceful, creative and robust”. Your own needs to restore your energy, to connect with your partner or other important people in your life and to get some time off alone – are currently difficult to meet.
If you are raising a special needs child and you are worried about burnout, then, as you know, there are no magic solutions right now. However, here are some ways to reduce stress levels:
1. Ask for non-caring help in your community or from volunteer groups
In many cases where a child needs special care, another family member or friend does not have the skills and knowledge to attend the care. The pandemic adds an additional layer of complexity, even for those equipped to babysit, as we all minimize contact with people outside of our household. Even if provincial restrictions are relaxed, nothing can change for some families with a medically fragile child until a vaccine against COVID-19 is in place.
That said, loved ones can do something by shopping for groceries, preparing cooked meals, and checking in by phone so parents can 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 the legal profession and provide their support through letters and emails to politicians and institutions if this could help ensure that your child receives additional support and service beyond this exceptional time.
2. Join a peer support group for parents and carers
At the end of the day, chatting with people who understand what you’re going through can be a lifeline. Not having to explain that you will be able to let off steam without guilt and having a network to advise you on the resources and services that you have accessed can help you get through the tough times. Because many of these groups have strong online networks, you can access support from your phone or home computer once your child is in bed. Facebook is a good place to start your search or to contact a large Canadian organization that supports families of children with your child’s specific medical condition.
3. Find out about new opportunities for short-term pandemic care
Some large hospitals and community health centers are responding to the crisis by providing relief care for a few hours to families who need them during the pandemic. One such example is Children’s Hospital of Eastern Ottawa, but it’s worth checking with your GP, social worker, or specialist working with your child for information on local resources.
4. Know the symptoms of caregiver burnout
While the typical self-care advice given to parents who don’t have a minute to themselves at this point can be somewhat useless, it is still important to pay attention to what your body is telling you. If you feel overwhelmed, have difficulty falling or staying asleep, have a headache or chest pain, become excessively irritable, or feel hopeless, it is important that you see a doctor for a diagnosis and treatment options.
5. Relax your usual standards
Do what you need to do to have a moment to yourself, whether it be giving your child extra screen time, moving them to an earlier bedtime, or using ready-made meals or delivery services if that’s within your budget. Extraordinary circumstances call for extraordinary strategies. So be nice to yourself and focus on getting this through from one day to the next through all other parenting goals.
WATCH: HOW THE PANDEMIC AFFECTS CHILDREN WITH SPECIAL NEEDS