This term keeps coming up. Don’t catch the Coronavirus. Everyone maintain distance. Close all the schools for the foreseeable future! But… what about our ability to work, says everyone.
Haha, I’m sorry, but what’s different for us as special needs families. We have always had to deal with lost jobs and careers because our kids couldn’t access sustained, adequately trained, and affordable childcare. I remember the grief and entrapment I felt when I had to let the professional certification for what was to be my second career lapse. School did a marvelous job back then of banning A from every after school program there was, and then the town summer camp made us pay (a lot) per hour for one on one care. Our finances dipped so low, we didn’t even dare buy a beach trinket that R was longing for when we went on a vacation which we would have had to cancel if we hadn’t pre-paid for it. What about our ability to work indeed.
You might be wondering what distance learning is going to look like, and how that might affect the academic rigor you are used to demanding from your child’s school. I hope you will consider how much those concerns are magnified when a child with an IEP is kept home. Regression and lost skills are the absolute norm.
If you are suddenly feeling bereft, and stifled by the loss of unquestioned access to public spaces, I have a dish of irony for you. It’s served cold.
We only tap into what people must be going through when it affects us. I have been reading about the fears people have regarding this period of heightened awareness, and they are the realities of many autism families 100% of the time.
-We are always in need of extra bathroom supplies because we are always cleaning up our children’s waste.
-We are always restricted in our permission to access communal spaces, and the larger society usually does not see a problem with it.
-When we do access those spaces, our families are often alone in a crowd. Just as you are afraid of the toll that social distance will take on your psyche, we acknowledge our right to give voice to the effects of years of alienation upon our own psyches.
-Our non verbal, intellectually disabled children may not be able to describe their symptoms. This applies to teens and adults as well. We are eternally worried we will miss something, and that they will pay the price.
-For many of our children, touch is the language they cherish. Even when a parent has a cold and avoids giving kisses so as not to infect others, we see the anguish it visits on our children. They cannot hide how painful it is not to be touched. Affectionate words are not an adequate substitute.
-Domestic violence is often exacerbated by lengthy homebound time periods, such as snow days, winter breaks, and, yes, pandemics too. I hope you can see how that is a greater possibility for caregivers, whether it is intimate partner violence that may be complicated by the limitations imposed by ritualistic autism life and the aforementioned difficulties in accessing career options, or the taboo topic of mothers and siblings who might be brutalized by autistic teens and young men who do not know their own strength. I think it’s also important to say that the disabled should not have to worry about being abused by their caregivers, but it happens in some families, and it is happening even when the plague isn’t around.
-If hospitals are ‘pandemic triaging’ and giving more lifesaving care to those perceived as being of more value to society, well, we are in no ignorance of what standing our children with disabilities will have, should they require emergent care.
-The resource hoarding we see around us is nothing new, as communities and towns constantly resource-guard against the special needs community.
Tldr: Autism families are always socially distanced, and the worries people have about the fallout from the Age of Coronavirus are not new to us.
Will I be deriving any petty satisfaction from observing people’s adaptations to social distancing around us? Not really. R’s choir trip to Washington DC has been canceled, and we are not sure how to make college visits happen at the moment. We will be fortunate if those are the only worries we have. But mostly, I hope that people will remember the way they feel now, and retain some consciousness of how this is the lived reality all the time for a great many people with complicated needs.
What will you do with that consciousness?