“The end of summer is not the end of the world. Here’s to October…” – A.A. Milne
The cooler weather prevails, as do the yellowed leaves falling on our butterfly garden. The random scatterings make our new garden look settled, and I’m already looking forward to the spring when everything will bloom again. Mind you, I’m debating with planting a redbud tree yet.
I’m not the only one still focused on the garden. Though our routine has changed with school, Rachel still wakes up and leans over to look at the garden through the window. When the weather permits, we bring both girls outside in the afternoons and on weekends.
School has started on a good wheel. Though the number of COVID-19 cases is rising across our province, I’m grateful for each day the girls can experience time away from home. I’ve been screening my kids daily since birth, so the school COVID-screening adjustment was hardly noticed. Thankfully, both Rachel and Janneke now come home tired but content. Their smiles before and during the day reveal their joy with being around friends and other caring adults.
Janneke is in a grade 6 classroom with neurotypical peers at Beacon Christian. Though she cannot wear a mask, her classmates do, and they are careful with her. This year, she’s moved upstairs to a different section of the school building. After one week of school, she figured out how to navigate the new hallway and classroom in her walker.
Rachel belongs to the local Catholic high school, and she came home so happy on her first day. Hopefully by the time this column is published, we will have the rest of her school days sorted. Because Rachel is now enrolled in a larger school system and is technologically dependent on her feeding tube, she is required to have a nurse accompany her. At this writing, there are few nurses available for the schools, so we plan one day at a time.
The lack of nurses available for schools adds to the growing list of concerns families and caregivers of children with disabilities – and adults with disabilities – have on account of the limitations influenced by COVID-19. Paediatric rehab therapy sessions were canceled or shifted to a virtual format, hospital procedures were significantly limited, and respite services to support the whole family were not allowed. Similar to the experiences of those living in long-term-care homes, families, caregivers and adults with disabilities have also felt further marginalized these past six months.
A growing crisis
Feelings of isolation and burnout increased significantly for those caring for and those living with disability. Furthermore, older children and adults in group homes were kept from seeing family and accessing community services that would support their daily living and emotional health.
These concerns remain. Though additional funding will support the backlogs and waitlists, I wonder if a sustainable change will only happen when our society becomes aware of how limited our own perspectives have been. As our province reopened from the lockdown, many were able to visit their cottages and churches, and enjoy interaction with others. Families who care for – and individuals with – disabilities did not and still do not experience these freedoms.
Co-designing ethical directives for living through a pandemic allows for empowerment and ability. COVID-19 is not the end of the world, but it is revealing some painful ignorance and biases. Here’s to offering glimpses of hope when we widen our lens and bring others into focus.