Musings After A Zoom Seder in an Autism Home – April 2020

For anyone not familiar with Jewish Passover Seders (Seder is a Hebrew word that means “the order of things”, and is the name for the traditional ceremony that Jewish people perform every year on the holiday of Passover, which follows a specific order), there is an annual precious part of the Seder where the youngest participant recites what are called the four questions (really one question with four different answers.) The question is “What makes this night different from all other nights?” And the four answers relate to the ways that the holiday rules make the time of Passover unique and different from the rest of the year. It’s always a sweet time because generally the youngest participant has been practicing for the night for a while, and if they don’t collapse in a puddle of stage-fright, they generally get their first standing ovation and are often bitten with the “love of limelight” bug right then and there.

But this year of course, in the spring of Corona, Jewish people all over the world were struck by the obvious answer to that annual question of “What makes this night different from all other nights?” Well, everything really.  For the first time in history, people everywhere are confined to their own homes, (not because of war), and what has always been a large extended family or community celebration, was now regulated to celebrating with whoever was in your immediate home. So in 2020, everything is different…including, thank goodness, long distance communication and the platform Zoom…how we all wish we had purchased shares in Zoom in early February!!  So, many of us resorted to Zoom Seders this year.

What was not different I realized, was my pre-Seder anxiety. I had invited a few friends (who would otherwise have been celebrating alone) to join us on a Zoom Seder, with no intention of trying to do the post meal parts of the Seder (which are always a hotly contested issue anyway: every family seems to have members that feel that the Seder must be completed, even if it lasts until 1 or 2 AM, vs the members who are pragmatic and only interested in doing the symbolic Seder up until the part with dinner.) In the days leading up to the April 8 Seder I thought to myself that this year this would be a breeze, I’m not cooking for a huge mass of people, I don’t have to worry if my house is super clean and organized for an incoming crowd…we’ll just do a little bit of symbolic cooking, set the dining room table nicely, and call everyone on Zoom. What could be anxiety producing?

My son is almost 25. He has autism. That’s not new, so I am not still in the early stages of understanding and figuring out autism. I have had plenty of years to get my head around this, 25 to be exact. And yet, I am still amazed at the number of times that I forget about the profound affect that autism has had on all of our lives.

While I was fitting in preparing the Seder foods for our own family and a friend between my online music teaching, I was of course juggling (as I do every day) my son’s learning needs and confusion, exacerbated of course by now having all of his learning go online. He is a kinesthetic, visual learner who does best when he can see modeled what it is that he is supposed to be working on. All of that is out the window now of course. In the midst of my juggle, he and I started arguing about something inconsequential, which built and built in the way that only inconsequential things do (especially when they are masking something else underneath), until he screamed at me, “You’re always in a bad mood when you are preparing for Passover!” And I thought, though I didn’t actually scream it, “And you’re always in a bad mood ON Passover!”

Ah-hah…light bulb…we were both being triggered. Triggered by all the years of non-Zoom Seders when something out-of-the-ordinary-routine happened and set off a sensory overload meltdown. Unconsciously immersed in fear, both of us, of that impending meltdown. What caused the meltdowns? The list is endless, and anyone reading this who has Sensory Processing Disorder or is a parent of someone with special needs would have their own list, but here is my partial list: just being out of routine, traveling to family somewhere else in the country, sleeping in someone else’s house or a hotel, the big table full of family and people he might not have known, the cacophony of lots of loud cousins in echoey rooms, the rules of when to eat what, (there is of course that truly amusing memory of the year that someone set the bowl of hard-boiled eggs on the table next to where my son was sitting. We only noticed that he had neatly peeled and eaten 13 eggs – white part only, making a creative circle of yolks around his plate, when we got to the part of the Seder where we were all supposed to eat a hard-boiled egg, and of course there were not enough left for everyone), the endless waiting for the food to happen (asking in a loud voice, “Why do we have to sit around the table if we can’t eat?”), husband and I gauging the room…can we let him go and run around or find something else to do, is that going to be considered bad form, is he not going to want to do that because his cousins are all staying, etc etc? In short, trying to make him fit in to socially expected norms is what caused/es the meltdowns.

I have written in a previous blog about my son’s wonderful, admirable, enviable knack of being able to call out the elephant in any room that he enters. I love this ability of his, though of course there have been times that the conformist in me wanted to crawl under a rug when he said something particularly off-color by politically correct standards.

But this Wednesday, I breathed in, breathed out, thanked my son for pointing out my pre-Seder mood to me, and carried on the day with a little more understanding. (I also on the spot renewed my long-discarded practice of going out for a one-mile run, and it was wonderful!)

Evening came, we set the table for Passover, we connected computers and television screens to Zoom, welcomed all of our friends via Zoom, and helped a 90 year old guest figure out how to use Zoom, which was truly momentous (I only pray I have half of her mental capacities when I get to 90.) Instead of charging straight into the Seder, we did a check-in, asking each one to say a word or two about how they were feeling on this night when everything is out of routine and we are asking, “What makes this night different from all other nights?”

We all went around the Zoom room, and everyone was of course dealing with the Corona isolation in different ways, but thankful to be able to be together in this format, different as it was. When we got to our son’s turn, he said, “What makes this night different from all other nights? Everything! We wouldn’t normally have a TV screen on the table, and you would all be here with us. And truthfully, even though it is good to see you, it really feels lonely that you’re not here with us. That’s what I’m feeling. I want to feel thankful, but I just feel lonely that we can’t be with you and you can’t be with us.”

Nailed it. Called out the elephant in the room. Not politically correct. Not socially acceptable. But honest in just the wonderful way that he can be.  In the Western world we are all trained to keep a stiff upper lip, always point out and focus on the positive, maybe just not mention the negative.  As my mother used to say, “What good is it going to do you?”  And there is definitely truth in that, vis a vis is the cup half empty or half full?  But there is also tremendous need to acknowledge what isn’t great. And there is a lot not great about this odd time that we are living in, along with lots of silver linings.

We have long let go of the need to make our son fit in to every social norm that there is.  (He’s also an adult, 25 as I mentioned, so even if I still believed that was important, which I don’t, I couldn’t make him anyway.)

Because my son was feeling lonely and sad that Corona was also impacting this holiday that he has had such mixed feelings about over the years, he decided that he wasn’t in the mood to sit there for the Seder part, and left to work on homework, cycling back in when we got to the hard boiled eggs. Where he proceeded to eat just one. Leaving the yolk on the side. No meltdown this year. What makes this night different from all other nights? Everything, and in some ways, nothing.

I shared this song back when I started this blog in 2016…time for a review! Not about Passover, not about Corona, but about the elephants in the room that neuro-typical people try valiantly to hide while non-neuro-typical people simply reveal. Happy Passover/Easter/Ramadan everyone. I hope everyone is staying safe.

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7 Responses to Musings After A Zoom Seder in an Autism Home – April 2020

  1. I could so relate to your description of the things that “trigger” each of us during times of stress, the variances in ways our neuro-atypical kids respond to change, and the beauty of being able to identify those elements in hopes of embracing them a bit more gently next time we find ourselves in discomforting situations. It is normal to find ourselves not always embracing change; sometimes only enduring it! I will say that right now I feel my family enduring more than embracing, but I’ve decided that isn’t terrible. Acknowledging our own “elephants” goes a long way toward making change easier for ourselves and our loved ones. Hopefully not during another pandemic, but no doubt there will always be phases of change in store for us in the future. Thanks for sharing this, Joanie. And Happy Pesach!

  2. AvatarLiz Buchanan says:

    Thank you for this reflection, Joanie! What makes this time different from all others? So much. I appreciate your son’s ability to unveil the elephant.

  3. AvatarDavid Meyers says:

    Thanks Joannie for personalizing your experiences so others can understand autism. This must be a difficult time for many on the spectrum who are sensitive to routines and scheduling. Funny how understanding those impacted by ASD teaches us more about ourselves.

  4. AvatarEllen Allard says:

    Joanie – this was such an honest and intimate look at what you are going through. Thank you for sharing with us. I’m trying to embrace the change, finding a new normal, but if truth be told, sometimes I’m simply just accepting it. Passover this year was, like your son said, sad. I tried to find the happy, and succeeded, mostly. But I also felt the isolation, the lack of boisterous singing, the not-very-full table of Passover foods. Hopefully, next year we will be back to seders as we know it.

  5. AvatarJean Milman says:

    Hi Joanie,
    Thank you for this wonderful reflection. Your son sounds very perceptive endwise. You are so wise as well! I have been working with students for the last year who are neuro-atypical (some of them) and I am just reading the book Uniquely Human. So much of the information in the book as well as what you described gets me to look at and question how we live our lives and relate to one another in general. Often this level of understanding would be good for all children (and adults).
    I remember sitting in on the workshop you did with Lisa Heintz during my first CMN conference. I was so impressed by the both of your intelligence and clarity as you spoke about your own children and then children you teach.
    I hope I am able to take in even a little of what you have done and share it with my students.
    Thank you and have a wonderful passover and springtime!
    -Jean Milman

  6. AvatarJudy Avisar, Melbourne, Australia says:

    So beautifully, sensitively and transparently articulated Joanie! You are one of a kind, travelling this life journey with an ever-growing thirst to destigmatize, to learn, to unveil for all to seee, grow and come out of the shadows of shame.
    “You’re always in a bad mood when you are preparing for …..” I hear these words in my head….whatever important event I may be preparing for….the stress, the desire for perfection…..hmmm…..
    thankyou for your reflection that allows me to see myself in the mirror.

  7. AvatarJudy C says:

    Belated thank you for sharing this! You are an amazing mom and write beautifully! Glad you are getting back to running and nature. Enjoyed listening to The Elephant in the Room song again! I love elephants especially baby elephants!

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