No Respite: Parenting Autism During COVID-19
Parenting Autism During COVID-19
By Tavis Bohlinger, PhD
In the midst of the global quarantine
Two days ago, in the midst of the global quarantine, my son’s school called to invite our son in for a few days next week, just for a few hours, to work with his special needs, one-to-one teacher (practicing social distancing, of course). I wrote down the five dates on our whiteboard calendar in the kitchen. My son jumped around the table. My wife wept.
As the father of a child with autism, I have learned to let go of the fanciful speculations of my pre-marriage and pre-children existence. I wanted what my uncle and his wife seemed to have in good measure: an emotionally stable home with occasional bumps they would navigate with increasing dexterity; four children who grew into competent young adults and now parents of young children; boys who were eager to be like their father and worked hard to please him, whether in athletics or academics. Those dreams met the reality of autism and were gradually deformed. I had no say in the matter.
The school of autism is a harsh institution. There is no respite unless paid for. There is no entreaty for peace in the midst of this perennial battle. There is no hope, at least not for a return to normalcy. Autism enters the home, and she does not leave, despite many prayers offered in humble faith. Because she cannot hear, I wonder if God is listening.
The school of autism is a harsh institution. There is no respite unle
ss paid for. There is no entreaty for peace in the midst of this perennial battle.
I have often pondered, usually on a walk late at night when the children are finally asleep, what life will be like with my son in his elder years. Will he ever leave home? Should I welcome the unwelcome, having him with me throughout his early, mid, and late adult life? Should I leave, should I stay? And what effect has this experience had on my own mental, and spiritual, health? How can one possibly cope with such a weight of grief, caused by none other than me? Was I notthe one who copulated, and she the one who bore? Are we at fault? Is this karma? Do we deserve this, and if so, what ever did we do?
I have dug deep into the graveyard of my past, looking among the bones for weapons to combat the ever encroaching demonsof Despair and Anger, and that ugly tree Bitterness. But these monsters yet smile and drool, all the while whispering that I am not capable, and my son is not worth it. The creeping tendrils of Bitterness have already clawed their way into my heart. I confess, at times I have failed to resist. I am not just angry at God for this “gift;” I am morose. I am disappointed. I am not grateful.
My duty, however, is to remind myself of those moments of sublimity that have far exceeded anything else I have experienced in my life so far, apart from those rare moments of true bliss that define one’s life like the snowy peaks of mountains define the Alps: my first kiss, my first time making love, the birth of my first child (yes, him).
This may sound strange to those uninitiated to living with and caring for disabled persons who are your own flesh and blood. But these brutally short, always instantaneous, moments of real connection with my son, sometimes just a flash in his eyes as they lock with mine, are enough for meto carry on this burdensome, ageing task, one that repeats itself every single day without respite, that threatens to outlast my capacity to live.
And so, although COVID-19 is a real threat to life and livelihood on a global scale, within the confines ofour small home in London, the virus represents something quite sinister besides. COVID-19 is the Monster outside the walls that refuses to pause its siege and let us rest. It is the invisible attacker whose burly arm around my neck is slowly suffocating me, and I cannot negotiate terms of release.
But perhaps, just for three short hours, while my son is at school two days this week, I will be able to breathe. And in that breathing, to rest, and from that rest, to be a better father than before.
I have often pondered, usually on a walk late at night when the children are finally asleep, what life will be like with my son in his elder years.