Autism, The Calendar, and COVID 19
Posted 17 December 2020
Every morning when Morgan gets up, she walks to the kitchen to place her water cup in the sink. She goes to the bathroom, then comes into the living room to open the curtains. She sits down with her iPad calendar to cheque the date. If she is not sure what is planned, she will announce the number out loud, expecting me to confirm what is on the schedule.
Morgan is a young adult on the autism spectrum. Having a regular routine is not only important for her. As her mother and caregiver, it’s important for me.
Knowing what to expect cuts down on the stress and anxiety for our entire family. We have always struggled with the changes that come with the seasons. Whether it was the start of the school year, holidays, or summer vacation, it takes a considerable amount of time to settle into our new circumstances.
One of our biggest transition challenges to date was leaving school in 2016. Where we live, students in the special education programme complete school at age 22. This felt a lot like jumping off a cliff into a dense fog. We just prayed we would somehow land, without too many bumps and bruises, into another place where we could sort of belong again. Thanks to the support of a strong disability community in our area, with time, we managed to patch together a new normal.
Then along came 2020 and COVID-19. This was nowhere on our calendar.
Beginning in March, all the threads of a meaningful post-school life we had worked so hard to weave together, began to slowly unravel. One of the first things to go was Morgan’s job at a local sandwich shop. Even though it was only a couple of hours, two days per week, it was a place where she felt needed and appreciated. It had been her first job, and she had worked there for four years.
For individuals with intellectual disabilities, jobs can be very hard to come by, even in normal times. Her little sandwich shop was just one of countless businesses that did not survive the effects of the pandemic.
Another loss was a day-programme which Morgan attended two days per week. The programme provides continuing life skills and opportunities to practise social skills. It was a place where Morgan gets a little relief from “too much mom”. A place that gives mom some time to handle business, take care of things that bore Morgan, and take some much-needed time for myself. It helps Mom be a better mom. The centre closed for what was supposed to be a two-week break, and never re-opened.
Our faith community is another central part of our lives. Our church has an active special needs ministry for children, as well as adults. When they gave Morgan a place to worship, they gave our entire family a place to worship. Not being able to congregate during this time was hard, but we were thankful for online broadcast services. Morgan’s teachers created weekly recorded videos for her class, calling out their names individually, letting them know they were being prayed for and wishes to see them soon. Morgan called it “cartoon church”.
We have a wonderful disability community in our town. They normally help us fill the blank spaces in our calendar throughout the year with sports, dances, workshops, art, and community outings. One by one, COVID-19 postponed, and then cancelled, every one of our scheduled events. Morgan’s calendar, which had once been our source of preparation and stability, became a constant visual reminder of all the growing uncertainty.
The necessary activities that remained took on a strange new look. Masks have became a regular part of our wardrobe on outings to the grocery store. Hand washing and counting to 20 is now a regular part of our routine when returning home. Medical checkups turned into a telephone call. The chairs disappeared from our pharmacy waiting area. Waiting has never been easy for Morgan. Taking away a comfortable place to wait only added to her dissatisfaction. Every little thing was just getting way too hard.
Thankfully, we’ve gained some serious skills for creating our own version of normal over the years. I could see it was time for me to find a place to sit and be still. I needed to get back to my place of peace so I could get Morgan back to her’s.
I have made a habit of getting up early while the house is quiet, to get my thoughts in order.
Knowledge is power
I sort out the things I can control from the things I cannot. I remind myself I only have to handle one day at a time. I pray for the wisdom and peace I need to do that. I pray to hold on to my joy because it is my strength. I pray to hold on to my sense of humour, because it will most likely be needed. When my head is clear, I’m able to bring back memories of the things that keep us on track.
Helping Morgan understand that we are being careful to help our friends and ourselves stay healthy gives her a reason for why we are having to do things differently. Next, it was important to replace the things we couldn’t do with things we can.
We started by creating a job during the time we used to work at the sandwich shop. Morgan now reads a storey to an audience on online on Tuesdays. She began helping her grandfather deliver meals to a few families in need. I do the driving and she takes the food to the door. She calls it “trick or treat”, but the mask she wears is a little different. It is helping her with her greeting skills. She has never been fond of the word “exercise”, so we just take regular walks through the neighbourhood. When the weather is not cooperating, we take indoor walks at our fitness centre. Thursday is house cleaning day. We change the bed sheets, wash and fold clothes, and vacuum. She says, “We have to clean up this mess”. She also doesn’t like the word “homework”, so we just have fun with numbers, colours, art and music. Sometimes we create art for a friend and share. Since balance is important, she also lets me know when she is “busy relaxing.”
I am thankful we have finally found a way to fill the days of this year’s calendar, and Morgan knows that Christmas always brings a new one. Hopefully it will be a healthier, happier one for all.