“How Are You and How Are We?”

Well, so here we all are. School is a distant memory. Everywhere non essential is shut down. How are you holding up?

I’m going to be brutally honest and confess that we have purposefully muddied up A’s understanding of what day of the week it is so that he won’t know which day swim class is supposed to be, or which day to remind us how much he wants to go eat dosa at Swagath. Information like that would only add to his sense of despair. Thoughts once formed in his mind must be acted upon, which is precisely what cannot happen right now.

School has been sending a lot of resources, including an explanation of the virus and why we must stay home, but the only video he wants to watch is the one I asked his teacher to do. She spoke very briefly, assuring them they would be together soon. A likes to place people in settings, so I imagine he looks more at her silhouette, and how she is framed by the room she was sitting in when she made the video.

It is a delicate balancing act we are all walking these days. We know that A won’t remain on an even keel indefinitely, but we are trying to show him he is supported and loved through a massively confusing time. It would not be surprising at all if he thought he had done something wrong, and that his punishment is to stay away from his friends. If the shutdown drags on, he will lose all motivation to hold onto his self control. We are already seeing a few signs.

We can only pray that people in our community are doing everything possible to mitigate the spread of COVID-19. Autism families cannot carry on for prolonged periods without in-person support services. We also cannot risk getting sick ourselves, as backup care for A is nonexistent. We are it. So my selfish plea to all my readers is—take all precautions to the maximum extent possible. Here in the US, we have not made it out of the woods yet, and how we act will contribute greatly to outcomes.

I’m grateful for all the gatherings that are now happening online. R is having piano lessons this way. I’ve sat in on a couple of wonderful religious services. Last week, there was a webinar hosted by the National Council on Severe Autism. A panel of experts talked to a group of us about the issues on our minds: potential lapses in needed psych/neuro medications; maintaining routines when our children cannot understand such drastic alterations; the risk of loss of medical insurance if a parent should lose their job, thus leading to loss of access to already-established ABA services; the utter lack of said ABA services at this time; potential violence in the home, and so much more. Towards the end, they talked about what to do if our kids should show signs of the virus. They do not respond at their best in chaotic hospitals even during normal times, and if we are told not to even go to one, we may not be able to gain a sense of the true extent of their symptoms. Parents like us need experts who understand what a mountain of responsibility we are shouldering. NCSA is planning to host more such webinars, so if they are relevant to you, do join in.

Which brings me to how much I appreciate that mental health professionals are giving needed care through telemedicine. I find that it takes a different set of inner resources to benefit from online/phone therapy sessions, having also done them when I am traveling, but they are effective and helpful. I know that access to therapy is a privilege, so I won’t declare that everyone should set this up, but grounding ourselves at this time is really important, however we achieve that goal. If we are to bring ourselves through a protracted period of nuclear unit isolation, panic buying, and meeting our friends at the park are not the answers we need.

Thank you to our gym trainer, K, who has been sending us some basic but tiring workouts to keep us from losing our momentum.

As others have pointed out, we should all be painfully aware of how much art we are consuming at this time. Society should be compensating all artists for their work all the time, so let now be the moment when we learn how dependent we are on the creative beings who choreograph and dance, draw, paint and sculpt, act, compose and play music, write, and so much more, helping us to open our hearts and better understand our world.

Stay well, dear readers.

Radha.