Not much

Sunday 3 May 2020

My son Nat is 30 and has autism. His expressive language is somewhat limited, and he relies on rote answers when he can. A few years ago, one of his caregivers taught him that if someone asks, “What’s up?” you can answer, “Not much.”

At first I thought, “that’s not always a good answer,” but then I started paying attention to how people around me responded, and sure enough, not only is it a good answer, but it’s almost always the answer people give.

It’s especially appropriate these days. Nat has been living with us through these COVID-19 times since the middle of March, and he is frustrated at how limited his days have become.

One of Nat’s favorite things is a three-week calendar showing what’s going to happen. It was a regular routine when he would visit on weekends from his group home: we’d sit down and update his calendar. Every day would be marked with where he’d wake up, what he would do during the day, and where he would go to bed. Unusual activities and special events in particular would be noted and recited. He would often sit and study the calendar, or would ask to review it with us.

When he first moved in for the lock-down, we tried updating his calendar, but the result was too depressingly accurate: every day was the same, and every day was at home. The only special event was Passover, which had been changed from in-person to Zoom:

A Zoom seder with 19 people on 8 screens

Soon the weekly calendar was abandoned as uninteresting, and Nat started saying, “April,” meaning, I want it to be April when this will be over and I can go back to my regular life.

Of course, April came without a let-up of the lockdown, so he started saying, “May.” Now that we are in May, he says, “Summer.” We can’t give him a definite answer. The best we can do is to remind him that we have to wait, and that everyone he knows is also at home waiting.

I have been walking with Nat, a long-favored activity of ours. We’re up to about five miles a day, which is good for both of us.

My wife Susan has been handling most of the weekday activities other than the walks, trying to find things for Nat to do. They have been doing a lot of Facebook, a baking project most days, a little street basketball, and chores around the house.

She has taken to calling this “Suzie’s Little Day Program“:

Suzie’s Little Day Program pros and cons:

Pros: 1) Great staff-to-client ratio; 2) Lots of love; 3) Lots of napping; 4) Great treats; 5) Strong exercise component; 6) No ABA Whatsoever.

Cons: 1) Over-reliance on sugar; 2) Over-napping; 3) Not enough variety in peer group; 4) Moody staff; 5) Unreliable hours; 6) No ABA Whatsoever; 7) Often boring AF.

Overall, Nat is taking this very well. He has settled into this underwhelming routine. He dutifully wears his face mask on walks, and now knows to walk far around other people on the sidewalk without me prompting him. He likes getting on Zoom calls with the groups he is part of (MUSE foundation, Special Olympics, his day program), even if it’s just to watch because jumping in is difficult in those chaotic events.

We have gotten used to having him around full-time. There are 12 nearly empty bottles of shampoo in the shower (hard to explain). A few favorite Disney movies are on tight rotation. He keeps us a little more regimented, since ad-hoc is not his style.

I keep a close eye on him. He will not let us know if he starts to feel sick, so we have to be alert for him. He can be very passive, so it’s easy to feel guilty if he is staring into space or napping too much. We feel like we should be filling his time somehow, but it’s not possible to keep him busy ten hours a day.

Luckily, he has been in a calm period overall. There were other times in his life when these days would have been much stormier. We hope that his even temper continues. It’s been seven weeks so far, and we don’t know how much longer we are going to be together like this.

This is just our life right now. We’re all doing what we can. What’s going on? I’d have to say, not much.

Comments

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Tenderly written, thank you for sharing. Love to your house from mine.

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I just finished Susan’s book “Making Peace with Autism” and I must say that she is an excellent mother with such an insight on what to do during all those challenging early years for Nat. I most admire her tenacity, courage and strength in raising those three wonderful children of yours. On this Mother’s Day, congratulations and best wishes to her and all the mothers that supported her in this journey.

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