There are such a wide range of perspectives of the lockdown measures for the pandemic. Everyone is impacted to varying degrees. For some it’s just a matter of battling the cabin fever as they work and school from home. For others, it is trying to adjust a self employed business to keep it afloat for the next 6 months or who knows how long. For some it’s unemployment for a second time in a year while others in essential services and frontline work are working overtime and are exhausted both physically and mentally. Some are just plain afraid and feel safe at home.
For us it is a great big complicated mess of predicaments that keep us into a category all our own and that no EI or Covid Response can cover. We are on our own when it comes to the supports that have been a considerable help to us in dealing with our normal, everyday struggles minus Covid Lockdown complications. As it is with the Covid lockdown measures, we are pretty much up the creek without a paddle going over waterfalls every stinking day and the term Covid Weary is not the term I would use: Covid Abused would be a more suitable term.
Our boys used to participate in day programs and recreation/social programs during the week and on weekends as well as occasional respite. Every week they were swimming and engaging in lots of physical and social activities and we were able to get breaks during those times to either run errands, complete little projects or get out on a date. The movement for individuals with autism is a huge help with regulation of stimulation to them. It really seems to give balance for them. Without the movement programs, they are less and less able to regulate the over stimulation of the environment around them.
Since Covid, the day programming has been cut down due to increased fees and we are burning through the funding that we use to pay for it. One of our sons started refusing to go to day programming and hasn’t been going since the Fall. We still aren’t sure what is the reason behind that. It could be he is afraid of the masks. Or it could be that they can’t do anything with them at day programming like they used to and he’s bored there and just prefers to be home being bored. His funding will not run out if he decides to go back. Unfortunately, we can’t use his funding for our other son’s programming.
All other programs and respite have been cancelled since March 2020. Almost 11 months.
I’ve had people (Professionals) say, “Yeah? Like, so has everyone else.”
Please let me explain. I’ve left my job so that I can care for our guys so that at least one of us can earn a living. Normally taking care of two adults with such severe needs and dependence requires one on one care. We have always paid two people to care for our boys. When I say boys, I am talking full grown adult males that are 200 plus pounds and taller than me. They have meltdowns with self injurious behaviours. One slaps his head, jumps up and down and screams to the point of making himself sick and creating a bald spot on the back of his head. The other hits his head with a closed fist and bites his wrist extremely hard often breaking skin and bruising. If his helmet keeps him from hitting his head, he will slap his face breaking blood vessels and bruising and blackening his eyes with swelling. He also jumps and screams. Is there any intervention when they get to this point? No. Not with a 200 plus pound man. Even to those of us who are used to it, it is incredibly disturbing to see. Sometimes we get a few signals that it’s coming like heavy breathing or growling type noises but a lot of times we don’t know it’s coming until we hear that first slap and they go from green to red alert in just a few brief seconds. Pre-Covid this happened maybe a few times a week. Now we get to watch our sons beat themselves up a few times a day each. They don’t have their routine and they are bored and they have had no movement to help with self regulation.
What I want to do is cover my ears and crawl into a corner and rock until it’s over. But even then I would still feel the floor shake and hear the screams. My heart races, my stomach tightens up really hard and it hurts. My breathing becomes really shallow until my heart starts hurting too.
Some days, I can handle it and try to get them to a safe spot and reduce as much stimulation as possible and make attempts at distracting them out of their meltdowns. As time goes on the flight instinct grows and the fight instinct fades. I want to escape from this prison of ours. Our home, with the torture of witnessing such cruel and horrible treatment of our sons at their own hands.
How much longer will we have to endure this and what damage will we see at the end? I’m starting to realize the concept of self harm that my boys seem to have as their second nature. I’m pushing away urges to hit myself in the head and scratch myself ruthlessly. What is it about physical pain that would be an escape from the torment?
I feel like there is no playbook for this. Why on earth would this be on the minds of those making decisions about social programs during a pandemic when this just isn’t a reality for anyone? Why on earth would my work benefits cover a leave of absence for this? How can anyone in their safe minds comprehend the conditions of a home in this much turmoil? Where can the help be found when contemplation of such things is impossible to people who would never experience this?
We are not in this together and there is no imagination that can dare to say that we are not alone in this.