Susan's Blog

Sunday, September 10, 2023

Grateful Alive

I was thinking today of the things I got done, chores mostly, and feeling some relief that I am a useful human being. Bought groceries, paid some bills, filed medical for reimbursements, did laundry. Whew, I have justified my existence.

Well that is just a stupid waste of brain, to have to justify your existence.

So instead, I thought about what I’m grateful for in my life. No justification or explanation or rationale necessary:

Strong marriage

Humor

House

Garden

Healthy sons

Extended Family

Guitar

My guitar pedal (Screamer)

Jerry Garcia

Robert Hunter

Bob Weir

John Perry Barlow

Bob Dylan

Bike

Writing ability

21st Century science and medicine

Nat’s group home/service provider TILL

Charles River Center

BILT, Inc.

Max’s happiness and independence

Ben’s happiness and independence

Nat’s happiness and recent independence from me– hurts so much but is great

Cake

Belly dance always and eternally

Certain friends scattered here and there

Survival shows

Good comedians

Favorite books

Tuesday, September 5, 2023

The River in the Bay

So happy today. Everything moved forward and curled around us like a ribbon on a present. We rode our bikes 20 miles, eating breakfast in the middle. But it was later on, almost 4 o’clock, when we discovered a new thing in something very old. We thought we’d seen the whole Outer Cape thing—Ptown, bike path, Nauset Light, Wellfleet Harbor—and yet there it was, as never before. It’s a river leading into the bay. A woman told us about it; neither of us remember who she was. “At the end of the parking lot, the very end.” We couldn’t park yesterday but we could today—thank you Labor Day—and as we walked towards the pale green grasses we could see blue plastic footpaths leading towards water. The water cut through the marshgrass and widened out, lapping at the edges of a white sand beach. We walked the whole way around and saw it, the river, flowing around a gentle bend of beach, beyond which was the bay.

“Where do you suppose is the dividing line, the exact spot where river becomes bay?” I asked, knowing there was no real answer. Still, I walked all the way to that area and I could see a line of tiny dollhouse waves spilling over into a current. This must be the spot!

I walked through it, surprised by the strength of it, like the insistent, pulling hands of a toddler. I met up with Ned who told me to use his goggles and watch the sand fly by underneath us as the current pulled us along. “It’s like flying,” Ned said and I caught a flicker of his deep happiness, having found, at last, what he’d had so easily in dreams.  Then we held hands and we flew together upstream. “I’m Superman,” he said.

After, he floated/flew up and down while I walked against the surprisingly strong current. I moved at a diagonal from the beach, into the bay, my arms spread out from my sides, hands dragging in the water. Everything around me was golden: the sand, the sunlight, the millions of reflections of the sun on the tiny waves. My body felt strong, my eyes felt happy, my mouth smiled. My old love and I had found a new place to play.

Tuesday, July 4, 2023

Test Post

I’m making a test blog post for Nedde Sweets.

Thursday, February 23, 2023

Goodbye and God Bless, Gail Kastorf

I learned today that autism support guru Gail Kastorf, has died. My heart hurts hearing this because Gail was my very first support group leader. Gail was the one who showed me I was not alone. Her pamphlet, from the Autism Support Center in Danvers (1993? 1994?) was the first hands-on information I had every been given about autism. I wrote about Gail in my first book, Making Peace With Autism, Shambhala, 2006):

Reaching Out

My next step was to locate other people like me. I called the local branch of the Department of Mental Retardation, [as Department of Developmental Services was called back then], which ran an autism support group at a nearby office. My first night at the autism support group felt to me like coming home.

In this room full of strangers, I listened to story after story like mine. The mother whose child would not eat and for whom even the great Children’s Hospital of Boston had no clear diagnosis, who had finally returned home to Venezuela only to hear from her old family doctor the word she had been fearing all along: autism. Or the father of twins, one normal, one disabled, who had been given multiple diagnoses but who kept hoping and emphasizing the positive, only to realize that all the diagnoses were euphemisms for autism. Or Sheila, whose son had just been examined because the doctors suspected a hearing loss. He had not spoken a word until he was three. Yet testing revealed that his hearing was perfect.

The more horrible the story, the better I felt. Hearing the stories enabled me to formulate a story of my own, an explanation for what had happened to us, and tell it to the group. It went like this: Nat’s lack of interest in peers, toys, playing, all were clues if I had been strong enough to follow through. My pediatrician had also dropped the ball. If only she had known more about the early signs of autism! I should have trusted my gut. Because of the delay in diagnosing Nat, he had missed out on at least a year of potentially helpful therapies. What grim satisfaction I felt telling my story! It made me feel like a different person, cynical, hardened, and wise. I reveled in the eccentricity of the children discussed in the group; the collective misery we all felt was a balm to me. I found strength and relief being with people who had been wounded like me, who had lost the dream of perfect children, who understood how harsh this world can be.

I told [my husband] Ned about the meeting, but going to support groups was not his thing. He had a hard time knowing what he was feeling at a given moment, let alone expressing it, especially to strangers, so he stayed home with Nat and Max while I went to the group. He took over giving them their baths, and loved sitting with them while they played in the bubbles. He read to them constantly, fervently. He also found comfort in making to-do lists. I would find little index cards scattered across his desk and dresser, with items on them like “Call school people” mixed in with “Talk to roofer.” After each support group meeting, I related what I had heard to Ned, recreating the session for him. It was the tender beginning of a shared experience that allowed us some distance from our grief. Together, we analyzed the people I had seen at the meetings, comparing their families to ours. Ned was my sounding board, my information synthesizer. But I think if he had gone with me to the support group, he would have broken down and cried as soon as he tried to speak. Instead, every now and then, he would lie back on the couch and sigh, but he wouldn’t say anything. He didn’t have to.

Senator, Susan. Making Peace with Autism (pp. 43-45). Shambhala. Kindle Edition.

Sunday, October 23, 2022

A Successful Group Home

Please enjoy my latest piece in Psychology Today, about what makes for a successful group home for developmentally disabled adults. You may be surprised by what I think. Read it here.

Thursday, February 3, 2022

The Particularly Painful Isolation of the Autism Parent

Isolation is a huge and common problem these days. We hear about it in the context of Covid-19 and children staying home, whether because of safety concerns, or quarantine. The autism parent, however, faces these challenges as well as unique issues particular to their child’s situation. Today my thoughts have been heavy and colored with this special form of isolation. Because I am a lonely and isolated autism parent. I always have been.

For autism parents like me, our sense of alienation and Other-ness begins at the earliest stages of parenthood, when we realize our children are following a different path than expected. Even if our children are diagnosed early on, we may not know how to help them. And therefore we don’t know how to help ourselves. Our confusion for them leads to a confusion of who we are and what we should be doing. This feeling smothered me during Nat’s earliest days and continues even now, in his 33d year of life. And although I certainly benefit from the strong support network among the champions of neurodiversity, as well as from the advocates for the severely autistic, there is nevertheless a deep sense of isolation that I face daily as an autism mom.  I bet I am not alone, and the very existence of the autism support networks, the huge autism community, the autism grapevine, proves this.

I have found in all these years of parenting Nat, a lovely young man who is into law and order, organization, and seeks out stability, I have had to change fundamentally who I am (chaotic, indecisive, inconsistent), in order to understand him and meet his needs. And that is a lonely assignment. At the heart of my task as Nat’s mom is the assumption that only I understand him. As inaccurate as that assumption may be, that has been my life for more than three decades. And I can’t figure out another way to see it.

This practically solipsist world I live in exists beyond Nat. Autism in itself is not the problem. It is the relentless worry that is. I actually think I raised Nat great. He’s a smart and competent guy and he’s well-liked. But the worry I feel for him is soul-crushing. Other non-autism parents certainly have their particular struggles – I know because I have also raised two non-autistic boys. But autism parenting has a flavor all of its own. Non-autism parents have their own burdens but mine is about being the only one in his universe who cares enough about him consistently. Aside from my amazing husband Ned, anyone else can walk away from him whenever they feel like. Teachers can try and succeed but then they move on. All – and I mean all – of his doctors know far less about autism than me. And now, he’s in the adult world, although I’m approaching 60, I still have to be as vigilant as I have ever been – which is vigilance to a point of torture – because at any point along the way Nat’s life can completely fall apart.  It’s a total house of cards. He cannot verbalize his concerns in a way that most people understand. His frustration, understandably, leaps up like a brushfire. I fought so hard for him to have both a terrific day program and at long last a wonderful group home but I do know that nothing lasts forever.

And neither will I. So I want to figure it out so badly, I want to know what I can do to be sure that he will have a good life when I’m gone. But I cannot. That is something nobody can do. We can make plans and wills and trusts – and we damn well should. We need to find people now who can take on some of our tasks – duplicate us, in a sense – for as long as possible. But the essential question of how will my child grow, thrive, and be happy and safe without me is unanswerable. And that is agony. I don’t think typical parents grapple with that horror. It’s a situation that binds me beyond blood to my fellow autism parents, but also one that is my own private hell. Our own hell.

These horrific days of disease and the rise of hatred in the world also conspire to cut us off from one another. And so in the end all I can do is keep going, without answers, without respite. I have to keep reaching out, keep explaining, and above all stay compassionate, stay human because as far as I can tell that is the only portal out of this solitary existence. To love ourselves, our children, and then to extend that love to others – that is the way we create a high functioning neural network of sorts, one that sustains us and nurtures us so that we are a little less alone.

Thursday, December 2, 2021

Answering the Call

The call came, as always, when I least expected it. Of course it does, because if I had been expecting it I would have called him first. But there I was, blithely going about my business, doing my work, as if I were like anyone else. But, you see, I’m not. I am an autism mom and that means I need to be life-or-death alert like a rabbit, on call like an ER surgeon.  My beautiful bright son Nat is now 32 and so capable, so competent, mature, and dependable. But he is strung so delicately, like a fine old Stradivarius, and his music is just as beautiful, but it doesn’t take much to knock him out of tune. I love him so deeply and fear for him even more, so that I cannot completely separate my own psyche from his. So many of you out there will think you know better. “Let him go, for fuck’s sake,” you might be thinking. “He’s an adult, he’s fine, he’s come so far,” others might say. “Get a life,” or “I don’t know how you do it,” are the other popular refrains. It’s all the same to me. It just means that you are tired of it, you are frustrated by it.

But you are not me. You don’t know what it’s like to love Nat, and to fear for Nat. You don’t know what it’s like to get the call: “Out of the blue, Nat started screaming and slapping his head.” You don’t know what it’s like to have your heart stop and to feel utterly powerless and sad. So sad. There is nothing worse than your child to be in pain. Nothing. Even if he’s all grown, and has a whole life apart from you. But because of my love and my fear, my whole life comes to a stop because that is how it is, how it has to be.

Why do I fear? I don’t want Nat’s life to become limited. I don’t want the people around him to say, “we just can’t do it anymore.” I don’t want to see the love that they had for him grow dim from their own fear and frustration. I’ve seen it, many times. The people who promised to take care of him, to teach him, to love him, and who failed. In the end, I take him home with me, even though I don’t know how to keep him calm any better than anyone else.

Today, though, when the call came, it was different. The person calling sounded calm. Concerned. Responsible, not afraid. He told me about the out-of-the-blue outburst but he had something more to say:

“When I asked him to use his words so that I could help, he said, ‘December.’ And he said ‘Mom.’”

Then he handed Nat the phone. Nat sounded very wound up, his voice swollen with emotion. My heart puffed up in response. But I knew what to do. “Nat,” I said. “are you worried about December?”

“Yes,” Nat said.

“Because there’s no snow.”

“Yes.”

“So you’re really afraid that the December things won’t happen.”

“Yes.”

I exhaled. “Okay, so Nat, it’s true that there’s no snow. But it still is December. And we still will have Chanukah and Christmas. We’ll still have latkes tomorrow and Christmas in New Hampshire. And there will be snow, but not today.”

“Okay.”

“It’s still December and it’s still winter.”

Shortly after, Nat got off the phone. I sat there looking at my open laptop, at the work I’d been doing, and I knew that was it, that I would not be able to work anymore for now. That I had to get out of there and get home. Charge my phone so that I could call Nat later. Recharge my own battery, too, with a bike ride and a hot bath.  Get my story out of me so that I can breathe again.

And take a moment to be thankful and proud that Nat knew just the right word, and was able to say it.

And that I could be there for him and make it right. For even with a terrible, difficult moment like this, being needed by someone I love so much, and being able to help him – that is what it’s all about for me.

Tuesday, August 31, 2021

Dancing With My Mom

If you’ve been following me for a while, you know that I started bellydancing in June of 2006. Recently I got my 82 year old mother to try it! This is the story, run by my alumni mag the Pennsylvania Gazette. Enjoy!

Saturday, August 28, 2021

Nat Taught Me How To Garden In Peace

My August piece in Psychology Today is about accommodations on a personal, down-to-earth level. In other words, Nat taught me how to garden in peace.

Sunday, July 25, 2021

Creating a Sustainable Life in Autism Adulthood Parts 1 and 2

Please enjoy my July 2021 Psychology Today piece. I’m hoping to do a series covering a few different ways that we are preparing for the future when we are no longer able to be Nat’s guardians. We are slowly breaking in Nat’s two younger brothers, Max and Ben, to the concepts of SSI, ISP, group home life and day program happenings, which I’ve covered here, in Psychology Today June 2021. I’m also recording other strategies I have found helpful, to come.

Tuesday, June 29, 2021

Preparing Adult Children Emotionally for Their Future as Autism Sibling Guardians

My June 2021 column for Psychology Today is the first of a forthcoming series where I describe the process of getting my two younger and neurotypical-ish sons, Max and Ben, prepared for the future as Nat’s guardians. What will it entail? How did we discuss it? You can read about it here.

Thursday, May 20, 2021

Autism and Lockdown as Rebirth

I hope you enjoy my May column for Psychology Today, about how Nat’s arrival in my life functioned as a rebirth for me. Then, living with Nat as an adult during the Covid Lockdown caused me to recreate my life yet again.

Monday, May 3, 2021

That Night I Smoked Weed With Nat

Please enjoy my latest piece in Psychology Today! I’ll try to blog more from now on!

Tuesday, November 17, 2020

The Ancient Appeal of the Firepit

Please enjoy my latest piece in Pyschology Today, about the appeal of the firepit during the Covid era, especially to a nerdy little family like mine.

Sunday, September 20, 2020

How to Just Bee

If I had to come back as an insect, I’d want to be a bee. Imagine having your nose stuck deep inside flowers all day and then coming home and making honey. On summer days I’m a human bee. I’m working in my garden as much as I possibly can — despite a little arthritis, the threat of ticks, and poison ivy.

Most people love my garden when they pass by walking with their masks and their dogs. Most of them also say that they couldn’t do it — they cite reasons like black thumb or too much work — but I wish they’d rethink that. Gardens are good for the soul and good for the planet. If people would put work and money into a garden the way they do their lawns, we’d have more color and scent in the world, and we’d be creating whole worlds for other creatures. Gardens don’t take that much water if you plant wisely and according to your region. Grass on the other hand takes tons of water and lots of killing equipment like so-called fertilizer or weed poison or gasoline-powered lawn mowers. Grass looks great, though, like a beautiful outdoor carpet, and you can play on it, and sit on it, and if that’s your thing, go for it. Creating a garden, on the other hand, is building a paradise.

Let there be light. You need light to have a gorgeous perennial garden. Sure, you can build beauty with shade but it’s the full sun guys that hold my heart. I try to figure out my exposure and observe when the sun arrives and when it departs. You need at least 6 hours of baking, unfiltered sunlight. Some people say 8 but you can cheat a little with 6.

Play in the dirt. To have a great garden, you must consign yourself to a day or two a week of being really sweaty and dirty. Apply sunscreen, Off, hat, and gloves, and then get in there and dig up whatever grass or weeds you have. You can get this tool: You jam it in and then slide it under the grass like a tough piece of pie and you pull out the layer of sod. There’s going to be a lot of sod so think of a way to dispose of it, or a place to use it. I throw it far under shrubs and forget about it.

Imagine you’re a plant. You live the best kind of life, with your face in the sun and the world at your feet. What kind of home would you need? Lots of tasty soil. So if you notice your soil is tight and crumbly, think about how to make it soft and frothy. Imagine your toes are roots, stretching out into a soft bed. (There’s a reason they’re called flower beds.) Once you have a roughed up patch of dirt you can add in shovels of fertilizer. Oddly enough it is shit that one animal doesn’t need that creates the feed for other life. I like Coast of Maine with the lobster in it but you can use any combination of manure and decomposed matter. Not mulch. Manure, please. Then churn it all together like brownie mix.

Play in the nursery. I go to a small urban nursery that designs its layout like gardens, complete with three-foot-long windchimes that sound like symphonies, and old tree stumps and carved urns and flowing fountains. I wander the full sun aisles and just look and smell and touch. And read. Read those labels, consider all the information like required sun, height, color, and bloomtime. Here is my cheat sheet that tells you about the last three.

Your perspective is everything. I mean, literally, your point of view. How will you be seeing your garden most often, where do you sit and look at it? From what angle will you appreciate it? The thing is, no matter how much we want to see all of it from anywhere, we will only be able to see all of it from one place. But that’s the magic of a garden: most of the time you can’t see it all, so you want to enter it and see the rest. So it is your viewing spot that determines the layout. You want the tallest to be farthest away. Or do you? If your favorite flowers are the tallest, put them in the center! Just know that whatever is behind them will not be visible if they bloom at the same time. So find a way to see them all. Maybe it’s just a flash of orange echinacea peeking out to the side of your bold blue delphinium. Make every color and every spot in the garden count.

The March of the Flowers

Here is the sacred order of the flowers. Use this list as a way of putting your garden together. I’ve listed bloom times, colors, and most of the heights. Your work here is to figure out how much sun you have because these are mostly full sun. Every now and then a supposedly sun-loving plant will survive (gasping and leggy) in partial sun but it’s no fun for either of you.

Now go forth and garden.

March

1) crocus 2) snowcaps (white) 3) scylla sibirica (blue, low-growing, spreads beautifully) 4) hyacinth 5) forsythia 6) heath (piney flowering low shrub that spreads)


April 

1) Bulbs like daffodils, and tulips 2) Vinca (low-growing ground cover with purple flowers) 3) Flowering trees like cherry, dogwood and apple, rhodadendron, azalea 4) Lily of the Valley


May

1) Peonies 2-3′ 2) Poppies 2-3′ 3) Primrose 1’4) Iris 2′ 5) Clematis, wisteria -vines. Be careful with wisteria, it is really invasive 6) Herbs – generally low, good for edging 7) Scented geranium – 6 inches to 1’ These are not the annual geraniums you see everywhere in pots – purple and pink 8) Scotch Broom – big shrub, red or yellow 9) Thrift (pink, marble-size, low-growing) 10) Cerastium, aka Snow-in-summer, white on silvery green stems, covers my stone wall by my driveway, spreads like crazy) 11) Lupine, 1-2’ purple 12) Columbine (1-2’ pink, yellow, blue, tolerates a little shade)


June

1) All sorts of roses 2) Delphinium (2-5’ tall, stunning blues to mauve to white) 3) Pinks, carnation ( 6” to 1’, pinks, purples, fuchsia) 4) Coreopsis (1’, yellow) 5) Scabiosa (6” – 1’, periwinkle blue) 6) Lillies (Asiatic, tall, 2-4’ all colors, smell great) 7) Lavender 1-2’) 8) Catmint (1-2’) blue-lavender 9) Rose campion (1-2’, magenta on silvery stems with soft fuzzy leaves) 10) Foxglove, (tall, white, pale yellow and especially purple-pink, is finicky but magnificent) 11) Penstemmon (6”-1’ orangey red) 12) Daylillies (1’-2’, yellow, orange, red) 13) Hydrangea shrub grows big, mostly in blues 14) Sage 1’-2’ usually pale blue or purple 15)Baptisia, 2-3’ blue or dark dark purple 16) Honeysuckle


July

1) Butterfly bush (large silvery green 2) Echinacea – (1-2’, orange, pink) 3) Black-eyed Susans (1-2’) 4) Monarda aka Bee Balm, (2-3’ red or purple) 5) Hydrangea shrubby tree, goes white-to-pink 6) Hyssop ( 3’ blue-purple) 7) Hollyhock (3-5’ lots of colors)

August

1) Asters (Tall, purple or fuschia) 2) Daisies (2-3’) 3) Butterfly weed (orange) , 6″ 4) Tall phlox

September

1) mums, ugh 2) Bridal Bower Clematis (white) 3) Annuals (cheating but what can you do, it’s fall) 4) Shasta Daisies (tall, white, thick and green for the whole summer) Also, they smell kinda bad 5) Perennial verbena 6) Heliopsis (yellow sunflower types)

Saturday, August 29, 2020

Playing With My Autistic Son

At 57, I’m finally the mother I wanted to be. Read about it here, in my latest blogpost for Psychology Today.

Monday, August 3, 2020

Autism Vacation: Not Quite a Piece of Cake

Here is my latest piece for Psychology Today, “Autism Vacation: Not Quite a Piece of Cake.” Enjoy!

Tuesday, June 16, 2020

Connection and Autism: It May Not Be What You Think

You can read my June 2020 Psychology Today column here.

Monday, May 18, 2020

Susie’s Little Day Program

I was caught off guard by the Coronavirus just like everyone else. I look back now in horror at all the times I sat right next to people — even a sneezing guy on an airplane — and wandered around blithely without a mask. At the beginning of March, though, it all changed. I was picking Nat up from his day program on a Thursday for a doctor’s appointment, but while waiting for him to collect his things, I noticed how few people were in the room, and how few vans there were outside. I asked Paul, his dear friend and case manager, and Paul said that people were not coming in because of the virus.

Suddenly it was real in a stomach ache kind of way. What the hell was I thinking, sending Nat in every day when this new bug was actually killing more people than the flu? “Nat,” I said to him in the car, “You are not going back there for a while.” And I explained to him about the “sickness” that was very bad, and how we had to be really careful from now on. I told him that he would not be going back to his group home for a while either.

Nat was okay with it, and so was I, because we did not realize how the quarantine would stretch on and on. So for the first week it was all kind of like a sleepy vacation, and my husband Ned was working from home, so we just kind of “sweetied around” as Ned calls it. There was no schedule at all; I went on bike rides and cleaned up my yard, uncovering green shoots everywhere, imagining the colors that would soon be popping out of all the trees and the ground. Nat and I rediscovered our love for baking, and I was proud of myself for being able to stay away from the sweets and continue my long streak of success on Weight Watchers.

At some point, towards the end of March, I got bored and therefore grumpy. Ned was now comfortably into his work-from-home routine and so he was much less available for playing. And Nat, sensing the staleness in the air, suddenly started saying, “Go home.”

He meant his group home. He also began asking about his day program. I felt brittle and resentful of the whole arrangement, and Nat became anxious one day on a walk in the Arboretum. For the first time in almost a year, he was smashing his feet on the pavement, jumping high, and smacking his head. “Calendar, calendar!” he shouted.

We always had made him calendars when he was home on the weekend, but what could we do now? Monday: Wake up, Eat breakfast. Sit around. Get bored. Snack. Laundry. Dishwasher. Sit around. Lunch. Sit around. “No calendar,” he said when he looked at the week that yawned before him.

My irritation grew by the day, even though I was bellydancing (yes, I do that, shut up), playing guitar, and riding my bike. I got a medical marijuana card because I was so stressed out. Every time I looked at Nat, sitting so still, almost disappearing, I would feel the indigestion of guilt gurgling in my chest. As March slid into April, Nat began saying, “May,” meaning, “in May I’ll go back to the group home and day program.”

I said, “I hope so,” but I knew it would not happen in May.

What we needed was a day program. Well, good luck with that.

But — maybe? I created a list of activities that Nat liked, and told him to choose some for each day. He did it one day, but then refused. When I finally got him to articulate one thing he wanted to do, it was baking. Always baking. Before I knew it, I was going back in time, into behavioral training. I would use the baking as a way to get him to do other things.

But Nat would see right through me. He’d look at me with my perfect list of choices and his eyes would say, “Really? This is how you want to play it?”

So we would bake. And drive in the car to nowhere. And bake. And before long I noticed that Nat had a tiny little belly smooshed over his belt — something I never thought I’d see. “Well we can’t not bake,” I said to Ned. “So we’ll walk,” said Ned.

And they did. Long walks deep into Boston, avoiding crowded parks and their Covid-scented air. Ned would come back drenched in sweat, Nat would look like he’d just woken up from a refreshing nap. Soon Ned began relishing his job of plotting 4-5 mile walks. He had several requirements: avoid crowds; go for a long time; try to find new destinations each time; find a good podcast to listen to (no illustions here about chit-chatting with Nat for an hour of walking).

They’d be gone long enough for me to escape into something, usually dance or heavy gardening, my other joy. Seriously, the dirtier, the better. I’d have my break and they’d have exercise and an activity they both enjoyed. We could not get over the fact that Nat no longer insisted on the destination being ice cream as in the pre-Covid era. He wanted to go on the walk because he needed something to do and he felt good doing it. And it was his thing to do with his dad.

Then they’d come back and I’d give Nat (and me) an early lunch. I’d think petulantly, “Dammit, I don’t want to bake, why do I always have to bake,” and then I’d hear myself saying, “Nat, do you want to bake?”

We’d get out Mom’s Big Book of Baking, and pick out a recipe. It would have to be something we both liked because, well, Weight Watchers was stressing me out and the priority was filling Nat’s days and being happy with what we had. Still, most of the time I managed to get away with licking my fingers and eating only one cookie.

After the baking I would feel so proud of myself, and of Nat, who was very skilled at baking. From careful measuring to setting timers and temperatures to separating eggs, he was game for everything. At first he did not get why we were using so many bowls and taking so many steps to bake a cake. “Buy mix,” he said at first. “Nat, trust me,” I said, “You are going to love making a cake the real way.” And of course I was right. By May we were experts at making half batches of everything, half layer cakes, half peanut butter cookies, half of the fudge. Because I still needed us to survive this self-isolation and not acquire Type 2 Diabetes.

Then, the Zoom period of quarantine started, and soon we had choices of people to “see.” We did a Passover seder on Zoom (that was no more hectic than our usual seder). Then the day program started sending out links for hang-outs, or we’d facetime with grandparents, or have a music lesson with his rock band director. Suddenly I could actually develop a calendar that did not piss Nat off, because there’d be 10am Morning Meeting, 1pm Arts and Crafts, 5pm MUSE (the rock band gang) hang-out. And woven throughout were the walk and the bake.

We’d still have occasional discussions about when he’d be going back to his real life, and I found I could reason with him by describing what re-opening things would be like. He listened carefully, sometimes even smiling when I got really detailed about all the little changes that would have to be made outside, like masks and tests and smaller crowds. Now that it’s May he says, “June,” for when he’d like to go back, and I say, “Probably.” But I no longer feel anxious about what if it doesn’t happen in June. Because I know we got this.

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