Parenting During a Pandemic: Rainy Days, Mondays, and Daughters with Opinions

It's not the least bit surprising to learn that no parents have crystal balls.  Some of us think we can guide and steer our kids toward a given destination, but others of us know that perhaps all we can do is model, provide opportunities, ask and answer questions, and otherwise try to have some slight impact on who our kids are and who they grow up to be.  But we long ago learned that we have far less control and influence than we think we do.  Now layer on to that having a child with significant special needs, and control of any kind sometimes just seems like a cruel joke.  

Given the absence of an eternity elixir, parenting without a long-term net for a child with special needs is a special form of terrifying.  I spend a lot of time trying to ignore the terror, because I know how utterly paralyzing it can be.  Instead, I focus on the little victories in my son's life, and try to push off the bigger questions to some indeterminate point in the future.

Enter my daughter, who doesn't believe in delayed, well, anything.  So she thought nothing of telling my husband recently that she thought we were failing her brother.  He should NOT be snuggling in your bed first thing in the morning and last thing at night.  To which my mind and heart reply that I know that's probably true, but I love that he loves us, that he needs that contact, that affection matters to him.  And where else is he going to get it, if not at home?  It's not like he has friends, or a girlfriend.  Yes, he's 25, and it will be utterly weird if he's still doing this at 30 or 40, but for now...

And according to my daughter the oracle, we haven't done or thought enough about his future in terms of housing.  Which just goes to show how little offspring actually know about how parents spend their mental/emotional/actual time.  I've chased down every idea I've come across, attended more dull and discouraging symposia than I can shake a stick at, and asked everyone I think might know what options are out there, and why aren't I finding them?  Short answer to that last question:  because they don't exist.

A year and change ago, we had plans to bring our son for a trial stay at a special needs kibbutz in Israel, a magical place where he could live and work and thrive and grow.  And be among peers, and dogs, and horses, and other animals.  And swim, and help harvest organic vegetables, and work in a winery, perhaps.  But other urgent matters intervened, and then COVID hit.  And since then, I've thought a lot about having a child of mine live thousands of miles away--not only from my husband and me, but from his siblings.  And while my Navy-bound son is unlikely to be a living-in resource for his brother (for a host of reasons), my daughter might be.  And more important, likely will want to be.

So while I'll continue to try to look for life options for my son outside of our home, where he can live, work, and otherwise thrive, I'm not sure I'll ever find them.  That leaves me with a pile of anxiety and worry that I'll likely never get out from under.  But my daughter's critique notwithstanding, at least I'll have my morning and evening snuggle sessions to look forward to.

Parenting During a Pandemic: If I Ask You a Question, Will You Tell Me No Lies?

I know I'm not the only parent of an autistic child who is curious, if not desperate, to unlock the vault of our child's mind and get answers to all those questions that have gone unanswered for us, from the trivial to the profound.  The pandemic, given how it's thrown us all together for such a long, unbroken period, has left me thinking a bit more than usual about what I might want to know, if I could get those answers.  Here's my radically incomplete list of questions I'd love to know the answer to, if my son were able or willing to tell me:

Why if you hear me say out loud that you're autistic, do you always respond that you're not?

Do you understand what you're saying when you say that you hate telling the truth?

What are you seeing, if anything, when you cock your head sideways and your eyes seem to be looking intently at something off in the distance?

Do you dream at night?  If so, what do you dream about?

Do you ever feel sad?

Is there anything you're afraid of?

Do you miss not having friends?

Do you mean it when you say that you want to hit your sister?

What does love mean to you?

Who do you think will take care of you when you're my age?

When you say that you have a secret and that it's that you can't ski alone, is that your only secret?

Do you always pepper us with Sesame Street or Barney-related speech because that's what's important to you, and that's what you feel you understand the most?

When you tell daddy or me not to be angry with you, are you afraid of something, or do you just think you try hard to be happy and good, and that that should be enough?

Do you understand why we sometimes get frustrated with you?

Do you think it's appropriate for you still to be snuggling with me before you go to bed and when you wake up in the morning?  Is that just a longstanding habit, or is it a physical/emotional need you're trying to satisfy?

Do you know how much daddy and I love you?

Do you know how much we worry about you?

Do you love us?

Do you worry about us?

Do you ever cry?

What kind of future would you like to have?

Do you get scared when we leave you alone with the dogs to go out for a bite to eat?

Are you afraid of people out in the world who aren't like you?

Are you afraid of people who are like you?

Are you happy?

Do you miss us when you're away from us?

Do you love your brother more than your sister?  Or vice versa?

Is the world confusing to you?  Is it scary?

Do you feel different from the rest of us?

Do you notice when people stare at you on the street?

Do you still talk about Maya because you have a special feeling for her?  Was she a girl you loved?  

Do you wish you had a girlfriend?

What would be a perfect day for you?

Do you ever think about things like marriage or having children of your own?

What are you most proud of?

What's the first thing you think of when you wake up in the morning?

Do you feel smart?

Are you upset by what you don't understand?

What's hardest for you?

What do you wish we knew about you?

Are you glad you were born into our family?

Why do you always want to put your cold hands or feet on me?

What are you feeling when you have headaches?

Are there things you wish you knew how to do?

Do you think we've been good parents?

If you could answer one of these questions, which one would it be?

Parenting During a Pandemic: The Distance Between a Laugh and a Scream is Awfully Short

I've spent too much time during this pandemic year diving into the well of sadness and fear that seems to have defined, well, so much of this year.  Whether it was early days, and my eldest being hospitalized two states away with COVID-induced pneumonia, or hoping my mother's intuition diagnosis of my younger son's illness and response was correct, it's been a year of lots of stuff, to say the least.

It's also been a year in which I've struggled to take our struggles to heart.  I've felt guilty feeling weighed down, knowing how much harder some other folks have it.  I'm always the one telling myself that no matter the challenges we face, we're not homeless, we're not hungry, we're not...fill in the blank.  I'm always the one expressing gratitude and trying to pay it forward, to give back in ways that help others.  Not because I'm a hero, but because it's the right thing to do.  I also happen to believe that everyone--and I do mean everyone--has the capacity to give in some meaningful way.  Alongside that, though, I also realize that  it's taken me the better part of a year (and decades before that of trying) to take seriously that struggle is not only the outward kind you see easily because it literally steps in front of you.

We live in what I thought, when we moved in, was a reasonably spacious apartment.  I spent a long time looking for it, since I just assumed that we'd be living with my disabled son for the duration, unless some fabulous, appropriate, other kind of living option bubbled up for him.  But then my daughter moved home to go to school locally.  Then school went remote.  Then my eldest came home after grad school.  So with five adults and two dogs living together full time, spacious started to feel more like a studio.  At least we had sunlight.

But in addition to our being five adults and two dogs, we're also autism, anxiety, epilepsy, panic disorder and ulcerative colitis.  So our home is a pretty crowded place.  Overwhelmingly so at times.  There are days when things are so ridiculous, that all you can do is laugh.  I hold onto those days for dear life.  Because there are those other days.  Those other days.  Like when my eldest tried to physically restrain his younger brother, because he thought my lost-in-this-world son would hurt me.  I pleaded with my eldest to let his brother go.  "He won't hurt me.  He might just squeeze me a little extra hard."  The restraining thing came, I think, not just from a protective impulse, but from my eldest having lived away from us (until this year), for the better part of a decade.  So our rhythms, routines, and struggles were not that familiar to him.  And there's never been a point to telling him how bad it can get at home.  It can't be described anyway.  You either live it, see it first hand, or you don't.

There was the other day, when I went to put something back under the sink in our bathroom and found an unopened bottle of epilepsy meds.  I was proud that I didn't run to my husband and scream, "Why the fuck are you hiding Noah's meds in our bathroom?!?!?!  Did you not see me panicking a couple of weeks ago because we were down to our last pills???!!"  This bottle dated from February, when I tried to get ahead of what I thought might be COVID-related medicine supply issues (thanks to my brother-in-law's heads up to us) by buying some extra meds outside of insurance.  And then my husband goes and hides them.  And the kicker is, I manage all of my son's medications and medical appointments, but my husband plays hide and seek with the pills and doesn't tell me.  WTF??!?!

Maybe that little medication thing doesn't sound like much, but add it to regular infusion visits to the local hospital, visits with his gastro doc, check-ins with the neurologist, and an occasional emergency meds behavioral episode, and it ain't easy.  And I need to learn to say, to embrace, and to BELIEVE it ain't easy, rather than always pointing to folks who have it harder.  

The real challenge is that our struggles are occurring behind closed doors (though occasionally out in the street, if truth be told, when a child is just having a time of it in real time, in ways I can't control, or stop).  But mostly indoors.  So I look like a normally adjusted adult when I leave our building, smile at the doorman and super, offer them a hearty good morning, and go on my way.  They have no way of knowing how bad the night before or the morning of might have been.  Then again, neither do friends or family members.  And even describing incidents doesn't really cut it.  The only person who really seems to get it in our family is my brother-in-law.  He's a physician, so that gives him some insight no one else in our family has.  Same goes for friends with challenging kids.  That's about it.  

So we soldier on, and when it's a good day, it's great.  And I mean really, really great.  And it doesn't take much around here.  Which is just a reminder of how hard things can get.  A day of just nothing going wrong is genuinely fabulous.  We skip over the little bumps, because we're so used to them.  And we celebrate victories that in other families would likely go unnoticed.  "Did you hear the phrase Noah used today?  I've never heard that before."  Or the fact that I won $100 off my eldest who bet me that he wouldn't pass the Bar exam (candy from a baby, that one, though he still hasn't paid up).  My daughter's been doing great work in school and over the summer, even though her job vanished, she knocked back two non-preferred but required classes (one in math, the other in logic).  In math, a subject that inspires fear, she found herself a very skilled (and cute!) tutor online, a guy in Texas who's getting a graduate degree in math.  The money we paid unfortunately went to replacing his car's windshield, but so life goes sometimes.

I have to admit that it sometimes hurts that so few people ever ask how I'm doing, but those who do are the ones who actually care about the answer.  And I'm long past caring about the pretenders who ask you how you are and literally or mentally walk away as you're answering.  Try giving someone an honest answer to that question and see how readily it proves the willed deafness of the person asking.  So I'll stick with my group of mixed nuts friends, the people whose lives go off the rails like mine does.  The people who have roofs over their heads, food in their stomachs, and the other accessories of modern life, but who cry themselves to sleep, tear at their hair, yell at their spouses, and not occasionally think of running away from home.  But who also hold onto laughter, when it comes, tighter maybe than we should.  Because we're the ones who know that the funniest people in the world are also the ones with broken hearts...

Parenting During a Pandemic: Mom as Football Star

I've never thought of myself as any kind of great athlete. I've always loved to bike, and in recent years have taken up recreational running. I can also walk crazy distances. Back in the day--as in way, way back--I played volleyball and basketball. But that's mostly it for my athletic endeavors. Recently, I've come to realize that I have unacknowledged athletic prowess which I would say falls under the heading of "blocking and tackling." Fortunatley or not, that prowess has nothing to do with actual gridiron games, and everything to do with trying to stave off some kind of disaster on the home front. 

Last night was a perfect example. All went really well for my eldest son's return home from Officer Development School in Newport, Rhode Island. My daughter had decorated our apartment within an inch of its life to celebrate that, but mostly to celebrate her brother's birthday, which was the day before. Her decorations included putting up a gold lame curtain in front of the door to the bedroom that my sons share. All good, so far. But some time in the middle of the night, Noah must have realized that part of the curtain came down. Not able to take it in stride and just go back to bed, he came in to wake up my husband and me, and to perseverate on getting the curtain back up. "We'll do it in the morning" was not going to fly. And my husband, who'd had 6+ hours of roundtrip driving under his belt that day, and had an early work start ahead of him, was instantly agitated. Which of course made Noah redouble his efforts, adding his "Don't be angry, daddy" to the mix. Which had the opposite effect, since all my husband wanted to do was go back to sleep. And Noah was the obstacle in his way. 

Dog tired though I was, I got out of bed and tried to rehang the curtain myself. No luck, since I couldn't find strong enough tape. So I tried to mollify Noah by climbing into his brother's bed, hoping I could coax Noah that way to go back to sleep. But up he popped again, back into my bedroom. Desperately trying to keep him from waking my husband again, I fairly scream-whispered, "Let's go back to bed. We'll fix the curtain in the morning." His older brother, conveniently, had fallen asleep in the den, meaning at least I didn't have to wake him when I went back to their shared room. This time, I got into bed with Noah hoping, in vain, that being nearly on top of him would make it easier for me to keep him from getting up again. Of course that didn't work. So again I got up. I looked around for some stronger tape and hung the curtain much lower. It seemed to stick. Of course the height was a concern, but I managed to convince Noah that it was ok just like that. And he actually went back to bed. I woke in the morning in my own bed, though I've honestly no idea how and when I got myself there. Per usual, I woke exhausted from another night of interrupted sleep, but relieved that my blocking and tackling averted disaster this time. And allowed my husband and my other kids to get a good night's sleep.

Parenting During a Pandemic: The Best of Us

The only social media platform I use is LinkedIn. Which is kind of funny, because I'm really not interested in all the career-related advice and self-promotion that populates much of the platform. Thankfully, there are other kinds of posts to pay attention to. Or to share. In that spirit, I recently posted a photo and a description of my autistic son's latest visit to our local hospital's infusion center, where he gets regular treatments for his ulcerative colitis. My comments focused on how well-liked he is there, and how generous and warm his response is to the staff. In response to my post, Neil F, who knows Noah from his years as a participant in a special needs basketball program commented, "He is one of a kind!! The best natured human being..." That brought a smile to my face, but it also made me realize, once again, how wonderful it is to go through the world just like that--as a unique and incredibly good natured human being. Maybe it doesn't sound like much amidst the cacaphony of other stuff out there--angry, bragging, dumb, ridiculous, and so on--but isn't that how most of us would love to be thought of? I know I would.

Without intending to, Neil's comment reminded me that modeling is something we tend to look to high achievers for, viz., we seek to emulate those who are successful, famous, lauded for some reason or other. Which means we often focus on superficial things like money, status, credentials. Most of the time, character is barely considered in our calculations of what has value and why. Living with Noah turns all of that on its head. He doesn't have traditional "achievements" to call upon. Heck, he didn't leave high school until age 21, and college will never be in the cards for him. My son can't travel independently, take full responsibility for his self-care, understand money (how to earn it, use it, save it, etc), be left alone overnight, do a complex set of tasks completely unsupervised, or engage in truly age-appropriate social interactions. He doesn't have a single friend. Not because he isn't friendly, but because he doesn't understand the give and take of a friendship, or have shared interests with most of the peers he's encountered through the years. Noah's gift is to be that person who, entirely unwittingly, holds a mirror up to everyone else, and allows them to see where and how they fall short of his standards regarding how to be in the world. So Noah in the hospital not only reacts to the kindness of the staff; he inspires it. He puts some extra spring in their steps, is the reason they smile a little bigger, and for a little longer. He's the one they ask for jokes, because he makes them laugh. He offers to share the snacks the staff give him because, well, that's just reflexively what he does. He learned long ago (thank you, Sesame Street!) that sharing is a good thing. And Noah is all about the "good thing." In a world with so many problems, anxieties, and pathologies, there's something gratifyingly simple and reassuring about being the person who is the best natured human being. And I'm so grateful to Neil for reminding me of that...

Parenting During a Pandemic: Letting Go

Everyone has COVID stories. Some are sad; others ridiculous. And still others, truly tragic. Mine is a mixed bag of a bunch of stuff. None, thank God, rises to the level of tragic. But since I rarely let my emotions sit still, and I've lived at a high stress level for so long, it's highly likely that I just suppress--or just blow past--things that might catch others up short. Back in the early days of COVID, my eldest contracted the virus. That was in March 2020. He lived in a different state, so the whole process of figuring out if he was sick, how sick he was, whether and when he needed to get to a hospital, and so on, was all done via text message. Which is a special brand of maternal torture. Then of course there was the bald fact of having a very sick child (turns out he had a COVID-induced case of multi-site pneumonia) two states away, alone in a hospital. The most I could do was wrest a photo or two out of him so he could hold a medicine label over his head and I could see what the doctors were giving him. Since he couldn't breathe well or consistently enough to speak with me, I read the label. And of course it meant nothing to me. I focused instead on my son's glassy, feverish eyes, and his sweaty face. My mother's heart really, really hurt. But there was nothing to be done. We could only let him know we loved him, remind him to use the oxygen left in his hospital room if he needed it, and put our full faith and trust in the doctors and nurses treating him. Fast forward seven months and we're about to turn our son over to another bureaucracy, one in which whatever faith and trust I might have had has been shattered. Not completely, not irredeemably. But badly shattered nonetheless. On October 11th, my husband and I will drop our son off at Officer Development School, a Naval facility where he will immediately go into a fourteen day quarantine, along with everyone else there to learn how to be an officer in the United States Navy. This past year and the three before it have made me wonder if this country deserves my son's service, his commitment, his patriotism. I know that the pustule masquerading as Commander-in-Chief does not. And I openly asked my son if he had any reservations about serving this CiC. "No" came back the firm, immediate reply. I am actually glad that my son can see past the time-limited person at the top of the American military pyramid to the greater purpose the military serves, and the ways in which it can and has represented the best of America. Not because war is a meritorious enterprise, but because the military has managed--perhaps better than any institution, corporation, or other collective enterprise in America--to represent something as close to a meritocracy as we might ever get in this country. So following his Army cousin's advice, my son signed up, because if good people don't serve, who will? This first phase in the Navy is about six weeks, and will be followed by a more task-specific training in how to be a Navy JAG, in understanding the Uniform Military Code of Justice and all of the other requirements of being a lawyer on either side of a case, viz., representing the defense or the prosecution. I joke that the apartment I once thought of as spacious has come to feel like a studio, with five adults and two dogs living in it full time. My son has been sleeping on a trundle bed all these months, in his younger brother's room, stashing his clothes on the window ledge or floor. His autistic brother routinely climbs over him at all hours to come into my bedroom and wake me or my husband

so being woken at 5a.m. to start his Navy days might not feel so bad. At least during quarantine, he'll have a room all to himself, and he'll be obligated to do all kinds of physical fitness tasks. For a workout nut like my son, that probably sounds like fun. But I'll miss him terribly, even for these forty or so first days. He'll be at ODS during his birthday, but home in time for his brother's birthday and Thanksgiving (which fall on the same day this year). My husband will miss having someone to drive him to work, to chat with, to make the commute less lonely. In their months of commuting together, my husband felt like he got to know his son all over again. He's an older child now, with college, a couple of years of full-time work, and grad school under his belt. We haven't seen this much of him in probably a decade. It's nice to meet him all over again and to realize that the person we've liked and loved mostly at a distance, is someone we still like and love up close. No, he hasn't learned to pick up after himself at home, and he still needs to be asked to do things like walk the dogs and load the dishwasher. But I never expected that much change. In fact, I kind of liked the lovable slob he always was. And still is. But I will have some hearty laughs thinking about the quarters he'll be trained to bounce off his bedsheets, having barely figured out how to throw a comforter over his sheets in his shared room in our crowded studio apartment.

Parenting During a Pandemic: From Really Good to Good Grief

My son came home from a week-long stay with his aunt and uncle out of state. All went well. He made homemade ice cream with Aunt Cheryl, went grocery shopping with her, went to the zoo with Uncle Ken, and otherwise settled into a happy routine. Not long after returning home, he dug in on an issue that's popped up on and off for months now, viz., his determination to go back to an amusement park he likes. Not to go on the rides, mind you, but to buy a t-shirt. We've explained to him over and over and over and over and over that Adventureland is closed because of the virus. And no, we don't know when it will re-open. And no, dad's not in charge, so he can't make it re-open. And no, they're not answering the phone this evening because they're closed. And yes, dad will call on Monday and see if he can get more information. And I see my husband's patience getting stretched beyond its limits. And I try to run interference, though Noah insists on asking my husband. Over and over and over and over and over. And even if I give Noah exactly the same answers, that's just not good enough. He can only hear it from my husband. He only wants to hear it from my husband. Who's cooking, with the fire on under several burners as Noah is harassing him about Adventureland, about when it will re-open, and why it's not open, and when can we find out, and when will he call, and why isn't he in charge. And it's impossible not to see an explosion coming. So I reach for the emergency meds. "What's that?" "Your emergency pill." "I don't want that!!" "OK, then you have to calm down." Which leads to a new crescendo in the perseveration, followed by a slight decrease in intensity. All the while I'm thinking that this is never going to get easier and he's only going to get stronger and more determined as we get older and weaker and how is that ever going to end well and my god does this apartment feel like a studio, with all of us living here together. And how is my other son trying to study for the Bar exam with all this chaos, and after an eight hour round trip drive to bring his brother home no less. And why can't we catch a break. Well yes, Noah's week away was a break, but re-entry didn't give us an hour's respite from his craziness. And what if his programs don't come back in person for another year, if ever? How is this going to work? How am I going to keep this nearly 25 year old productively occupied, and how am I going to keep him from driving us to the edge of and over into insanity? He's still at it, still pinging from my husband to his brother to me, asking about when he can find out about the gift shop, about the t-shirt. I keep telling him that we'll call again on Monday, and maybe someone can tell him how he can get a t-shirt. In the midst of all this nuttiness, I distracted him briefly by giving him a shave of all things. Anything to get him away from my husband and the gas burners in the kitchen. Now there's a full court press to try to get him interested in buying a different shirt, one you can buy online, unlike from the gift shop at Adventureland, which of course doesn't have an online buying option. Because the cosmos apparently hates us. Because if there's a way to make things even more stressful for us, it seems the universe will find it. Because devotion, love, humor, distraction, pleading, and more devotion, love, humor, distraction, and pleading just aren't enough. And because our frayed nerves apparently need to be stretched beyond their human limits. And why not, in the midst of a pandemic, with everything about life disrupted, and with new, lingering COVID after effects, including extreme exhaustion, which make dealing with my son's torture-like perseveration that much harder. And just like that--or at least for however many minutes it takes to place the order--we get a reprieve. Noah's been convinced to get a different t-shirt. It seems he's settled on a Count von Count t-shirt. And now we'll move on to the perseveration about when exactly that t-shirt will arrive. On which day, at which time, and why is it late? And why hasn't it come yet? And when it will it get here? And repeat. And Noah won't lose interest in the Adventureland t-shirt--because he NEVER forgets anything--but maybe we're buying ourselves some time. Maybe we're buying some calm. Or maybe we're just deluding ourselves. We've starred in this movie so many times that the only reliable thing is knowing that it will repeat.

Parenting During a Pandemic: Love Hurts

It rained hard the other day. We needed it. The earth felt scorched, and not just metaphorically. I waited for the rain to subside and headed out with my new recycled woven plastic rainbow-colored tote (an early birthday gift from my daughter) to buy some provisions. First stop was a local food shop where I intended to get some bread and maybe a side or two to add to the main course salad I had planned for dinner. Then it was off to the health food store to see what they had by way of fresh organic fruit. As expected, everything fit in my new tote, though perhaps it was a sign that having filled it on the counter, the tote promptly tipped over onto the floor, where most items fell out, though none was crushed or otherwise damaged.

Such an ordinary thing, this brief outing to the store. Which is why it was so upsetting to return to an apartment turned inside out by my middle child's "episode" of aggression. In a fit of some kind of anger/frustration, he'd pushed his sister, hit his brother, and had to be restrained. He refused his emergency pill. His eyes were red-rimmed, and he fixated on his father having slammed the oven door, and on having hit his sister. His father had not, in fact, slammed the oven door; he'd shut it after removing a tray of cookies. Noah kept insisting that his sister apologize for hitting him, which she admitted to doing, in self-defense. Begrudgingly, she offered up a "sorry," which I had hoped would get Noah to stop perseverating. "Did she apologize?" he kept asking me. "Yes, she did Noah. She said sorry to you." Then he tried to calm things in his go-to way, which is to approach his sister and insistently tell her, "But I love you." It sounds strange. It's a weird kind of combination plea/declaration. She often resents it, and I'm not sure I can blame her. How can she believe that her brother loves her when he talks so often of hitting her and sometimes turns that talk to action?

My husband has wondered aloud more than once lately if our having reduced one of Noah's very long term meds by half is what's driving this behavior. It's impossible to tell. We're all cooped up, in much less space than when we lived in a house. Noah's schedule has gone from a mix of engaging outside activities to nothing, and it's been like that for months. We are all bored, confined, and losing our minds just a little bit. His mind was always more complicated and in some ways he has more to lose than the rest of us. It's this toxic brew of all of us thrown together, trying to muddle along, be kind to each other, be together in a healthy, loving way, and at the same time give each other space in a place in which space--physical and psychic--is at a premium.

Nothing about this is comforting, and god knows I don't have a magic answer. This week, I'm just grateful that my daughter has a job to go to, that my husband can take Noah with him to work, and that I can luxuriate on the days when the apartment is emptiest in having this temporary island of tranquility all to myself. I'll need to hold to that for when the door opens and everyone returns. What storms might brew then is anyone's guess...

Parenting During a Pandemic: Who's in a Chokehold Now?

Everyone's carrying something.  I even read a book once with that as its title, more or less.  My husband always reminds me that you don't know what goes on behind closed doors.  That's as true in my life as in anyone else's.  And I do wonder about pulling back that curtain, even a bit.  Is it an invasion of my kids' privacy, of my husband's, or even of my own?

But I also wonder if pulling back that curtain--putting it "out there" in a way--might not serve some useful purpose.  The same way I read of other people's painful experiences and can empathize, perhaps there is something in my experience(s) that rings true for someone else.  And in that truth might lie a point of connection, a drawing out from the isolation that those who have really challenging parenting roads often live with.

And sometimes, the absurdities of life just need to be shared.

Late last week, I was on my way back from my stint at a local food pantry. It's a long, tiring day, one that doesn't leave time (save for the ten minutes or so for lunch) to check in at home.  And that day, I'd left my daughter home with my autistic son.  They can and do get on each other's nerves, but it's never really been an issue.

Close to home, I got a call from my daughter.  She sounded upset, but on the other side of whatever it was that seemed to have her close to tears.  I told her I'd be home in a few minutes.  She told me that her dad had just walked in.  Where he found her in a chokehold, courtesy of her brother.  I'm not sure how she managed to call, but he had a good hold on her, according to my husband.  Thankfully, she remained calm.  Because when my son gets stuck, his strength is something to be hold.  His long, lean arms become like bendable steel beams.  If he wants to hold you, you are not breaking his hold.  I should know.  When he's gotten upset with me at times, not knowing how to channel his feelings, he's squeezed me--really, really tightly--and it's been frightening.  He's feeling adrenaline coursing through his body and he doesn't know in those moments what to do with it, how to channel it.  He knows hitting is wrong, so he comes very close to the line, but struggles mightily not to cross it.  And it's the rest of us that get caught in that struggle.  This time, it was my daughter.

When we can't get my son unstuck, when we can't talk him off the ledge, we have to resort to what we call his "emergency meds."  We've done that precious few times thankfully, but it's a scary, tense experience when we're in those moments with him and have no other recourse.

Years ago, I called the psychiatrist who provided the basic meds he was taking, during one of these "stuck" episodes.  I think I was most amazed that I actually got the doctor on the phone.  He told me that we should take my son to the ER.  I told my husband we couldn't do that, that all they would do is physically restrain and then sedate him.  And all we would have done is traumatize him.  So we muddled through, terrified, until we finally calmed him down.

Some time later, when I took my son to his epilepsy doctor and recounted that episode, he was horrified that the psychiatrist offered us nothing.  He immediately consulted a psychiatrist colleague of his and got us a prescription for what turned out to be an anti-psychotic medication.  I have husbanded that medication like a precious jewel.  I keep it hidden, to make sure no one takes it by mistake.  And to remind myself that it is truly for emergencies only.

My older sister came over the other night with her husband for drinks and snacks.  In the course of catching up, I mentioned that my husband had come home to find my daughter in a chokehold.  I saw this strange look cross my sister's face.  It was something--at least to my reading--like a cross between horror, embarrassment, and relief.  Horror speaks for itself. Embarrassment I think is about not knowing how to help.  And relief, of course, is about not having this be her parenting journey.

I made light of it because really, what else could I do?  If you're not walking this walk, you have no idea.  And if you are--even in the midst of a pandemic, and in the midst of the uprising against police brutality--you know that it's not only people who have brutal encounters with the police who wind up in chokeholds.

Parenting During a Pandemic: Moving Forward, Standing Still

These are turbulent times, to say the least.  There are moments when I feel hopeful about the prospects for achieving long overdue change, for bending the arc of the universe that much further toward justice.  There are other moments when I feel utter despair, when I lean into my belief that the entirety of Republican America is hell bent on burning the house down...with all of us inside.

Through all of this, I remain a parent.  Also a wife, with a parenting partner. The mother of one child who is autistic, and also lives with epilepsy and ulcerative colitis.  The mother of another child who contends with anxiety and panic issues.  And yet another whose stoicism sometimes worries me the most.  I fear what his silence is masking.  Is it his own fear, his rage at how things have played out in the America he has committed to serving? Is it something else altogether?

I have always tried--and will continue to try--to model for my children who and how I want them to be in the world.  I don't dictate their responses, though.  I have been the only one to attend a protest so far.  My daughter gets anxious in crowds, so her going might be more counter-productive than not.  Instead, I feel pride in her willingness to ask people of color when she doesn't know, or thinks she might not understand.  I feel pride in her standing up against bullies online who still belittle the struggles of America's black citizens, or make facile comparisons with white folks' experiences.  I applaud her leaning in to difficult discussions, and trying to make sense of the deluge of opinions and the volume of commentary under which a less thoughtful person might feel buried, and defeated.

I would take my autistic son, but the chance that he might act out in some way would be unfair to  other marchers, especially since it would be indescribably difficult to explain to him what's going on and why.  Although in truth, I could explain it quite well in simple terms he would understand, something along the lines of:  there are bad people in America who are mean to other people because of the color of their skin.  Noah is very much NOT ok with mean or bad people.  That's a lesson we've taught that he's learned well.  And I'm more grateful than ever in this moment that we made the effort to communicate that to him, his barriers to understanding notwithstanding.

As for my eldest, I wonder if it's especially painful for him to bear witness to all that is unfolding in America.  He is officially an officer in the United States Navy, though he has yet to assume his post.  People in uniform--though not the one he will wear--are the object of justified anger on the part of many millions of his fellow citizens.  Those uniformed individuals are part of an armed bureaucracy that has for too long tolerated the abuse of black Americans.  Is the military a kind of parallel to that in any way?  It has long been considered a place far more meritocratic than the private sector in America, far more willing to embrace diversity, and to recognize that life and death decisions among its ranks need to be as close to color blind as possible.  Choosing to see skin color in a fox hole can get everyone killed.  Is it a perfect world?  Not by a long shot.  But still...

I asked my eldest if he wanted to join me or go alone to any of the protests.  "It's not my thing," he replied.  Some might pounce, get angry, judge him for not being woke enough to march.  But that would just show how faulty snap judgements can be.  He knows more and is more aware than so many his age.  And what he knows comes not just from what we've taught him and from what he imbibes through reading and the like, but through the web of relationships he has developed through the years with peers from a breathtaking range of backgrounds.  He has listened well, learned well, and been not only a good friend, but a good ally.  So I don't push on marching.  That's always been more of my thing.

I do wonder more broadly what forward momentum looks like in these times.  What is it within a single family?  How do we measure it, if we measure it at all?  How do I nurture what I know is good and "right thinking" among my kids, while not pushing aside any challenging, complicating questions they might have?  How do I improve my own listening skills as a parent, so I can hear not only their words, but their silences?  How do I deal with any of my own missteps, especially now, when every misstep seems so weighted down by other stuff, and by the collective weight of past mistakes and missteps?

Parenting During a Pandemic: Not Vanquishing Joy

It can feel strange--maybe even indulgent--to express joy, satisfaction, contentment and the like during a pandemic.  After all, there's been a pretty steady parade of grim news.  Yes, there have been bright spots too, but still.  Millions are suffering and so many have died.  And yet...

As I sat around the Friday night dinner table with my family, I felt fine. More than fine, even.  I felt a kind of calmness and happiness I haven't felt in a while.  And it wasn't triggered by much.  In fact, the scene was really quite ordinary, though we all haven't been together this much in literally years. The clinking of forks against plates, the drinking of wine, the kiddush that preceded the meal, the blessing of our kids--these are all familiar parts of our family narrative.  But there was something extra sweet about this last Friday night dinner.  Maybe it was that my eldest hadn't been home at that point for long, and hadn't been home for an extended period of time in nearly ten years.  That's a long time for a family not to be whole.

The thing that most struck me though, was the laughter.  There was something light and joyous in our gathering.  That's probably extra noteworthy because we're a pretty serious bunch.  We can be silly--even ridiculous, at times--but our default is to be a pretty serious, thinking, sometimes arguing crew.  So the laughter was especially delicious.  I can't even remember what we were laughing about, and it certainly doesn't matter.  The fact of the laughter was the thing.

I reminded myself to appreciate the sounds around our dinner table because I know better than to take them for granted.  And lo and behold, the very next day, I found myself in a deep, dark funk.  I couldn't tell you why, but I was just so down.  Sunday was better, and I couldn't tell you why that was the case either.  That rollercoaster of emotion can be so exhausting.  Maybe it's all pandemic-driven, but I honestly don't think so. This up/down thing has long been a feature for me, not a bug.  I'm almost used to it.  But not quite.  Maybe that's why episodes of joy and lightness matter so much.  And maybe that's why I was determined not to feel guilty about not feeling guilty about feeling joy smack in the middle of a pandemic.

Parenting During a Pandemic: Crossing Finish Lines

'Tis the season of graduations of all kinds--high school, college, graduate school.  Like millions of other American students, my eldest graduated--just this week--from his graduate school.  I sat with him in my bedroom at 3p.m., both of us curled up with his laptop, as he tried to activate the link for his law school graduation "ceremony."  Truth be told, it wasn't much of one.

First, the law school dean offered his words of congratulation and encouragement.  Then individual photos of graduates scrolled by, interspersed with offers of congratulation from faculty and administrators.  Several pointed to their hope and expectation of celebrating graduates in person, one day soon, when it is safe.  Anthony Kennedy popped up on the screen.  I listened to him blather on about the Constitution and freedom, all while thinking, you're the schmuck who voted to gut the Voting Rights Act.  And you're the jerk who gave us Brett Kavanaugh.  Keep blathering.  Hopefully history will write an accurate portrait of the damage you've done.  And couldn't this "elite" law school have found someone who didn't shit on democracy to offer words of congratulation and encouragement to these soon-to-be upholders (we hope!) of the law, these defenders of justice (we hope!)  And like an answered prayer, Elizabeth Warren popped up on the screen.  Praise the Lord!  Someone at the law school had sense and decency.

My son looked handsome in his photo.  Maybe it was from his college days?  He was clean-shaven (making his mom very happy), and wore a pale blue button-down shirt.  He looked healthy and happy.  Sadly, he seemed the very opposite of happy throughout this event.  Not sure what it was.  He's not one for these kinds of things in any form, but even for him, a remote graduation, after weeks of quarantining with the virus, then quarantining without it because there was basically nothing else to do, followed by not being able to see friends in person, or being able to celebrate this milestone, say goodbye, wish each other luck, give each other high-fives and hugs, make promises to stay in touch, etc. etc., must have taken their toll.

So what should have been a happy occasion was turned into something quite downbeat.  I'm sure not all graduates processed it the way my son did.  But so be it.  Some will be upbeat no matter what.  Others will be more downbeat, no matter what.  I do hope my son takes some pride in having finished.  I know that he didn't seem to like law school much.  A professor here and there, sure.  But overall, he found it boring.  He spent more of his time and treasure on all kinds of non-classroom-related activities, like working with immigrants, with military veterans, with undocumented and unaccompanied minors, with those seeking to have their records expunged.  He co-taught a high school civics class, and worked on the cases of death row inmates.  So he did the stuff that spoke to his essence, to his soul, while doing what he had to do to earn a degree. Other mothers might browbeat their kids over their grades, over their performance.  I honestly couldn't care less.  Do your best or don't.  That's on you.  But no matter how you perform, always be the person I can be proud of and even more important, be the person you can be proud of.  If my son came out of law school with his values intact, with his soul unsullied, with his moral compass in working order, then that's success.  It doesn't depend on an in-person celebration, on good or bad speakers, or on class rank.  It might for some; it never will for me.  Or, I think, for my son.

Parenting During a Pandemic: The Ties That Bind

My eldest came home from school this week, with a few suitcases, his cello, two big bags of dirty laundry, and his soccer cleats in tow.  Wanting to get a jump start on getting organized--and desperately trying to stay ahead of the chaos of having all of us and all of our stuff under one apartment roof--I got the laundry going and started to unpack the smaller suitcases in the room he's going back to sharing with his brother.

In the course of unpacking, I found the usual stuff--clothing, books--but also something that brought me such joy.  My son had brought home a whole slew of framed photos that I'd forgotten he'd been toting around since college.  There was the one of him, his sister and me, taken in a friend's backyard after his college graduation.  There was the one of him and his siblings that is probably fifteen years old.  There was the one of me and him, from where I can't remember.  But I paused at that one and thought, What a beautiful photo of the two of us.  I looked young once. Time does take its toll.

I have no idea how many kids tote around family photos from place to place, but I am so touched that my son does.  To me it says that however far out into the world he goes, he remains tethered to us, in the best sense of that word.  Not forcibly connected, but linked by choice, by desire, by love.

Ours is not an uncomplicated family, so this connectedness is even more important, and not at all guaranteed.  Yes, my husband and I have worked doggedly to build family bonds.  Not didactically, but experientially.  My approach has been to use the opportunity of travel to get us out of our normal routine, and away from the stresses of home.  I consider it the greatest gift we've given each other.  Sometimes, those trips have meant leaving our autistic son home, and while it initially troubled me to do that, seeing the ways in which my eldest and youngest could connect without the extra stresses of dealing with their brother convinced me that there was a clear upside. And that upside was heightened by knowing that my autistic son was spending his time away from us with a loving aunt and uncle.

My son has been away from home for nine years, counting college, work, and graduate school.  His presence at home aligned mostly with school vacations, but not even always then.  He'd been a quiet, steadying presence at home, so his absence made a difference.  It meant there was no buffer between my autistic son and my daughter.  While she missed the very early years--which encompassed some of her brother's worst and most challenging behaviors--she grew up in a home distorted by disability, a home in which things were stretched and pulled in ways that were radically different from how things are in families that aren't living and wrestling with the challenges of disability.

Having my son home now is welcome, of course, but tinged with a little bit of sadness.  After all, his life, like the lives of so many of his peers, has been upended by the restrictions imposed by COVID-19.  The way forward for him is delayed, if not derailed.  Time will tell how his future unfolds, as it will for all of us.  But his being back, for however long, completes us. We've not all been together for any length of time since before my son left for college, so I'm selfishly relishing having him with us, even if his extended time at home is not by his choice.

I recall visiting my son at his last place of residence in college.  He lived on the top floor of a house, in a space decrepit enough that I asked one of his roommates if anyone in the house was a biology major.  He said he thought so, at which point I suggested he might be able to tell them what was growing in their bathroom.

My son's room was sparse.  He travels lightly, which might be unintended preparation for a life in the Navy.  On the wall above his desk, he had taped a copy of the letter my father, z'l, had sent to Yad Vashem, vouching for the righteousness of the Polish farmer who had hidden my father toward the end of World War II, saving his life.  I was so struck by that, and so touched.  I've never told my children what to value, what to prioritize.  That's a fool's errand.  Children watch and listen.  They see and hear what their parents prioritize.  And they mimic.  Not all kids.  And not all in the same way.  But still.

What I took away from seeing the inside of my son's college bedroom, and what I learned from unpacking his suitcases, is that we are with him. Wherever he is, and wherever we are, we are together.  As a parent, I'm not sure I could ever hope for anything more.

Parenting During a Pandemic: The Pain of Not Being Able to Fix It

My husband was reminding me the other day that when we were dating and he talked about wanting to have kids (we were pretty serious, pretty quickly), my response was something like, "I can't have children.  I have no idea what to do with them, how to raise them."  Clearly, we passed that hurdle, and have a trio of young adults who share our DNA as evidence.

I never read a parenting book, never subscribed to following the advice of complete strangers hawking their so-called "expertise" about how to raise kids.  So I did what turned out to come naturally:  I followed my compass. That meant letting my values guide my parenting.  And in that, I had a partner with whom I was radically, beautifully in synch.

We raised our kids in a community full of what I would call hysterical strivers, people who thought the most important thing in life was having your child ace his or her AP classes and matriculate at Harvard.  I knew that sort of striving was a special kind of bullshit, and I always chuckled over how the parents chasing that outcome were not parents who themselves had ever been to an Ivy League school.  And I knew that Harvard graduates as many jackasses as any other place, because having a high IQ, or being able to play the ukulele with your toes while scoring in a lacrosse game and installing fresh water in an African village doesn't make you better than anyone else.  It says nothing about your values and everything about what you were willing to do to impress the admissions committee.

So avoiding that nonsense in the community in which we lived was easy. Why?  Because our kids drank our family kool-aid, not the communal poison.  So my eldest, one of those honors classes, talented athlete, great musician kids, just didn't care about that poison.  In fact, when we talked with him once about how competitive high school was and asked how he thought about his GPA in light of that, he calmly told us that he wasn't willing to kill himself for another point on his GPA.  We told him that that might, because of how crazy college competition was, somewhat limit his choices.  He didn't care.  And we didn't either.  He applied to six schools--far fewer than most kids--and even with his stellar stats, got rejected by three.  Didn't rattle him at all.  Went to a perfectly fine school.  And when I asked him about his experience there, he pointed out that he could take the classes he'd taken anywhere; it was the friendships he'd made that mattered most.  Bingo.  Lesson learned.  And boy did he learn it.  Having just finished his studies at law school, he's the only one in his class who chose the military.  Schools like this one tout their bona fides with respect to public service, but 95+% of grads go into corporate settings.  Same is actually true of Harvard.  Kids kill themselves to get in, then chase money on their way out.

With my autistic son, there was no path to college.  He just got to stay in high school longer.  That gave some kids a chance to use him as resume fodder, as when they signed up to be his buddy in an after school club but routinely failed to show up because they had cheerleading practice or some other activity they actually wanted to do.  When the speech therapist who ran the club told me about these absences, I told her that it was obscene that they were using my son as a pawn in their college applications, and that she should under no circumstances endorse their behavior with any kind of recommendation.  It pained me to have to tell her that, but it was one of many occasions in the years of my dealing with a school system deluded by its own "excellence" that I had to remind faculty and administrators of the right thing to do.  Frankly, it was exhausting.

Then there was my daughter, an outspoken, fiercely passionate child who collided with a school system and a community of conformists.  Cliques were a thing not only among students, but among their parents.  Mean girls learn what they learn from somewhere, after all.

I couldn't wait to leave that community, and my autistic son's exit from high school was my chance.  He would have no life to speak of in the suburbs, given its car-based culture, parochialism, and social isolation.  Sure, I could drive him to and from the one vocational program he was in that had any value, but that would be it.  And that just wasn't good enough.  All credit to my husband, who went along with me even though he's not a fan of change, and loved the home in which we'd raised our kids.

Fast forward 2.5 years, and we're living in what seems to be the global epicenter of a pandemic.  While I remain strangely calm in spite of that, I do find myself worrying greatly about my children's futures--and frankly all young people's futures--in light of what I think is going to be a long-term catastrophe, both economically and in terms of the kind of undemocratic, fascistic country we are now living in.  I raised my children to cherish knowledge, ideas, curiosity, kindness, seeing, listening, and questioning. Maybe above all, questioning.  Not for the sake of playing "gotcha" but because it's only by posing questions that matter that we can arrive at answers that matter.  It's an effort, in fact, to vaccinate my kids against ignorance and against the moral blindness and cognitive deafness that shake an accusing finger at facts and truth, and at the thinkers and do-ers trying to find a better way forward.

My greatest joy is when my kids are out in the world and I get feedback about how they've behaved.  The mother who thanked my daughter profusely for getting her selectively mute child to speak.  The judge who noted that my eldest was uniformly liked and respected by all the courthouse staff, and that that was not commonplace among interns, given class and other tensions between college-level interns and those staff members.  The elementary school aide who told me that my autistic son was the reason she was so happy to come to work each day.  And so on and so on and so on.

For these reasons and more, it is both heartbreaking and infuriating to see so many dark clouds on the horizon of my children's futures.  What does it mean to pursue something meaningful through school and work, and find that both the floor and the ceiling are likely to collapse under you?  What parental guidance matters in a country undone by lies, by corruption, by cruelty, by incompetence?  I can applaud the goodness in people--and strive to be one of those people--but the larger forces of a virus that doesn't care and a President and his allies who care even less--is beyond catastrophic.

Prognosticators--who multiply in times of crisis, it seems--have made all kinds of predictions.  We'll be past the worst of it in months.  No, it'll be a year or eighteen months until we get a vaccine.  Might take three years for the economy to right itself.  We might never get a vaccine. My prediction, for what it's worth, is decades of struggle, of chaos, of suffering.  There's not just the public health wreckage; there's the deep, corrosive economic destruction.  And surrounding, undergirding, and suffusing all of that is the political destruction wrought by a lawless, corrupt, incompetent administration whose viciousness and self-serving lies rot the soul of this country in ways that might never be repairable.

So on the heels of what was a lovely, love-filled Mother's Day, I am heartbroken over what I cannot offer my children, of what I cannot promise them, and of what they--and millions and millions of other young people--have been robbed of.  The only thing I can promise them is that I will love them, hold them, console them, laugh with them, cry with them, and remind them that however out of control the world spins, I will try my damnedest to be their ballast, to be the mother they can cling to however vast and furious the storm.  I have no idea if that will be enough, but it's all I have to give.  And who more worthy to give it to than the beings I was once afraid to bring into the world, the ones who convinced me that love can conquer fear, that hope can conquer pessimism, and that fighting for what you care about, what you treasure, what you value, is always worth it.  

Parenting During a Pandemic: Tick Tock

Another week's gone by.  Or is it a month?  Or a year?  Or is it just a single day that won't quite wind down, instead just ebbing from night to day and back again, but with no fixed beginning or end?  And does it even matter?

I can hear a chorus in my ears of "kids need structure."  And while my kids technically count as adults, they need it too.  I think I might need it more. Even so, it seems just out of reach, my best intentions notwithstanding. But therein might lie the problem; my intentions are not enough.  It's as if I think I can think myself into structure, rather than actually creating the structure I think I need.

I suppose the same goes for my kids.  My daughter has classes on line, but when those end, then what?  What does a twenty year old's day look like, without the rhythms of school or work?  And what of my autistic son? His days were fully defined by school before he "graduated" from high school at age twenty-one.  Then he went off the famous cliff of aging out of school.  I worked doggedly to build something for him from scratch, including moving him to an entirely new community.  And things were looking pretty good.  Not perfect, but pretty good, considering all that wasn't available to him.  But pandemics don't care how hard you've tried, what your intentions are, and how much or little structure your kids might require to enable them to have a life that isn't just about some kind of terminal stasis.

I consider a day a kind of triumph when there is something akin to forward motion in it.  For each of us that might mean something different, and it might mean moving only one ball down the field.  Maybe that's not much, but there's an awful lot these days that feels like it's not enough, that it's inadequate to the growing list of things that need tending to, correcting, repairing, healing, holding up, and so on.

So whatever day, month, or year it is, I'm going to hold fast to the notion that getting something done that needs to get done needs to be enough. For that day, month, year, or whatever the heck time period I can no longer keep track of because trying to keep track feels like piling rebuke upon disappointment upon expectation upon hope upon need upon urgency and back again...

Parenting During a Pandemic: Girlfriends Who Make You Go "Grrrrrrrr"

This is likely to be a very brief post.  I'll just note that I never make a big deal of Hallmark holidays like Mother's Day.  As my mother-in-law has said, "Every day should be Mother's Day."  In fact, when my eldest said that he wanted to be home in time for Mother's Day, I suggested that maybe he should stay in Philly through the end of the month, since his rent is paid up, and being home would mean being sequestered with all of us for who knows how long.  If he wanted some space and freedom for a bit longer, I wasn't going to object.  In fact, I encouraged it.

But he didn't jump at that, and the plan was for him to come home this weekend, in time for Mother's Day.  Until the plan changed.  Now it seems that he wants to come home instead on Tuesday, two days after Mother's Day.  My husband didn't bother asking why, but I did.  Turns out he's staying to help his girlfriend pack.  "When's she leaving Philly?" I texted him.  "Monday."

When my husband came home, I unloaded a big bag of hurt, telling him that while I didn't make a big deal of Mother's Day, the fact that my son's giving up being home for it to help his very needy, always-stressed-out-girlfriend pack really stuck in my craw.  And that's largely because as a young man headed to the Navy, who the hell knows how many years it'll be before he can be home for Mother's Day.

So yeah, I'm kind of way less than liking his girlfriend right now.  Not only is she not supportive of his joining the Navy, she's now the reason I can't have all my kids home with me for Mother's Day.  Yes, I know it's a made-up holiday.  I get that.  I also know that I packed up a three-story house by myself and this girl can't manage a one-bedroom apartment.  Good luck with the real world, where young men willing to be at her beck and call might not be so easy to come by.  And here's hoping that someday--with some other guy--she learns the cardinal rule my father, z'l taught his daughters:  never come between a son and his mother...

Parenting During a Pandemic: Hair Tearing and Radical Amazement

I'm not an extraordinary mom, though I hope my kids think I'm at least above average.  Whatever their assessment, I consider myself a dedicated mom, one who tries to get better, to be better, to do better.  How I get there has been complicated by the circumstances of this pandemic, but in some ways, those same circumstances have made the role of parenting that much more urgent.  Essential, even.

There's the stuff of parenting that continues as a through line, even in a pandemic.  There's the nurturing, the supporting, the encouraging, the providing of boundaries and guardrails.  There's also the haranguing, the prodding, the reminding.  There's appreciating your kids when they're helpful, and wanting to murder them when they are not.  In our home, there's the familiar aggravation of providing three different dinners for four people, because we've utterly failed to enforce meal conformity for so long (primary thanks to our uber-picky autistic son) that there's no way we're going to slay that dragon now.

There is wanting to murder my daughter for keeping her room in a perpetual pigsty state, as if she's trying to drive me mad.  And no, closing her door so I won't see, as she unhelpfully suggests, won't diminish my aggravation.  But I also know that having a messy room is not--and never has been--a life and death issue.  So I try to move on.  My husband reminds me that she's been attending all of her online classes and seminars, and following up as needed regarding summer work or classes, if work falls through.  And yes, that matters.  Especially for a child for whom that kind of follow through hasn't always been a given.

The days when I'm tempted to rip my not-graying hair out (that's just how it is for most redheads), are counter-balanced by my daughter's reporting that she got her autistic brother to go on a three mile walk with her.  "Did you threaten him?" my husband and I asked in unison.  She gets him to do things we never seem able to.  We often chalk it up to his being afraid of her, but maybe she just has a better technique, drawn from growing up with him, and her experiences working with disabled kids at summer camp.  Whatever the reason, we're grateful for that kind of outcome.  Not so grateful when she argues with him, gets in his face, or provokes him with a word or a flick of some sort.  Brings me right back to wanting to murder her.

That emotional parenting seesaw is nothing new, I suppose.  It's just that there's no real relief for it during a lockdown.  No one's going anywhere, so we can't create the distance that might allow us to decompress, to walk away from and walk off the tension, the anger, the disappointment that bubbles up in families, however frequently or infrequently.

But something else--somewhat unique to families like ours--that this pandemic has made space for and allowed me to see, is its impact on my autistic son.  When his face-to-face programs shut down--including the work training program at Invictus that he absolutely loved--I wasn't at all sure how that would turn out.  What happened for the most part was that for the first six weeks or so, from mid-March on, my son slept.  And I mean slept...as in 18-20 hours a day.  He would get up, have his breakfast and take his meds, announce that he was tired, and promptly go back to bed.  Many nights, I had to bring him his anti-seizure meds in bed, because I couldn't get him up for dinner, or to come to the kitchen to take his pills.

I also couldn't get my son to go outside, not even for a short walk with the dogs.  He remained housebound, and nothing seemed able to change that.  But he also didn't seem unhappy or distressed. When he was awake, he did what he's always done when he's had nothing else to do, or was unwilling to do anything else--he spent time on his computer.  He was either noodling with the spreadsheets he's made about construction equipment or restaurants, or watching age-inappropriate videos from Sesame Street or Barney.  But then my daughter encouraged him to do puzzles.

We had a bunch in our apartment that were just too difficult, at 1,000 pieces each.  Not sure why my husband ever got those, but so be it.  My daughter was able to find a 300-piece puzzle online and when it arrived, my son spent hours completing it, with his sister.  Hours.  That was a revelation.  Both to see the two of them deeply immersed in a meaningful activity together, but also to see my son emerge from his near-hibernation to engage with something that held his attention as nothing had for months.  It was a magical, nearly miraculous thing to observe.  And it reminded me that, for all the challenges of cohabiting during a crisis, there might still be some bright spots.

Some of that, I think, might derive from lowering expectations.  I've done some of that myself.  I've thought: I should use this time to learn a new language, to learn to knit, to learn to play guitar, to try out new recipes.  I've failed to do any of that, though I did spend a few minutes with a language program on my phone.  I think it's my increasing distractibility that's been an issue, but it's also the fact that I actually hate online learning.  It just doesn't hold me.  I have enjoyed some online classes, where I basically just listen.  But the "interactive" stuff, where you put your questions into a chatbox on Zoom and wait to see if your question will be answered, leaves me feeling a weird kind of disembodied numbness, like I'm having an experience, but not really having it.

But back to my children.  So after the triumph with the 300-piece puzzle, my daughter decided to up the ante.  She managed to snap up a 500-piece puzzle for her brother.  The day it arrived, he spent 5.5 hours working on and finishing it.  Did I mention that he spent 5.5 hours on it???  Did I mention that for weeks prior, he'd been sleeping 18-20 hours a day?  Did I mention that he's autistic, that I couldn't get him to go outside, to be off his computer for the few hours he was awake?  His engagement with puzzles has been a revelation.  It taught me something about him that I'm not sure I ever really knew.  And this learning has coincided with a kind of miraculous flowering of his speech.  The kinds of questions he's been asking, the words he's been using, the curiosity he's shown, have been revelatory.  Sure, all of that has coexisted with some familiar, perseverative behaviors and speech, but the overall trajectory has been kind of stunning.  And I'm not sure if I would have appreciated it if I'd been out and about, distracted by all the shiny objects of daily life.  Instead, I've been inside with him, hunkered down, with ample time to look, to see, to listen, to hear.  I've been able, during the awfulness that is this pandemic, to experience something wondrous, something that might or might not last, but that has acquainted me--in the close confines of living with my quirky kids--with the gift of radical amazement.

Parenting During a Pandemic: The Milestones That Aren't

Yesterday, my eldest took his last law school exam.  I thought he said it was today, so I was late congratulating him.  But really, does it matter?  He seemed just to want to get it over with.  He always belittles these kind of milestone occasions--high school graduation, college graduation, culminating concerts, sports events.  Every. Single. One.  So the things that many if not most parents look forward to, I kind of dread.  Because they're just another opportunity to feel that another opportunity to celebrate something has slipped away.  Or been tossed away.

I can't blame any of this on the coronavirus, though I suppose we can blame the virus for the missed chance at least to attend law school graduation in person.  I think they're planning some sort of online something or other, involving photos of every member of the graduating class.  If my son remains true to his taciturn approach to such things, he'll probably just neglect to tell us when this online event takes place.  And it'll be just another opportunity to celebrate something that slips away.

I don't blame my son; he's wired how he's wired.  I can't change him.  I do feel sad that the things other families seem to look forward to celebrating, we rarely do.  Maybe the one exception was when my autistic son graduated from his high school transitions program.  There was a potluck lunch after the ceremony, and a bus driver came up and told me that she remembered driving my son to preschool years and years ago.  Someone had made a favorite dish of his.  And I cried.  I'm good at that, it seems.

But the boisterous, celebratory stuff that other families seem to take for granted?  Doesn't seem to be in the cards for us.  Certainly hasn't been yet.  I'm not counting on it ever being, frankly.  It would just be too painful to be disappointed, yet again, when another opportunity to celebrate something has slipped away.  Or been tossed away.

I thought it might be nice to have a virtual toast of sorts with my son this evening.  He readily agreed.  He suggested 3p.m., and I replied that that seemed a bit early, but not if we were in Denmark, so why not?  A short while later he texted back, saying he'd changed his mind.  And this became just another opportunity to celebrate something that slipped away.

There's the challenge of quarantining.  There's the managing of illness.  There's the anguish of knowing how much pain and loss there is all around us.  Then there is the stuff we inflict on ourselves.  I think for me, at a moment when our choices are so very, very limited, that might be the worst thing of all.

Parenting During a Pandemic: The Blessing of Blessings

Each Friday, when we usher in the Sabbath, is an opportunity to offer blessings to our children.  We do this after we recite kiddush, sanctifying the Sabbath.  This involves not only the aural transmission of words of blessing, but the tactile conveyance of those blessings through our laying our hands on our children's heads.  One of those "children" is taller than I am, so I either reach the top of his head on my tip toes, or he leans down toward me.  Either way, we make it work.  My husband and I take turns, blessing each of our kids, using the blessing for males for our sons, and the blessing for females for our daughter.

It might seem quaint, even odd, to pause one evening each week to offer a blessing to one's children.  I recall vividly, fondly, achingly, the sound and touch of my father's blessing me each new year, for the year ahead.  It is one of the most cherished memories I have of my entire childhood and adulthood.  I've no idea how my children will process or memorialize for themselves the experience of being blessed by my husband and me, but it's deeply meaningful to us as parents that we give them this experience, that we communicate our hopes that they will live lives of goodness, of peace, of security, sheltered and protected by God.

It may seem strange or even irrelevant to focus on such things at a moment of global struggle, in the midst of a crisis born of an illness that is beyond humans to control fully, much less banish.  And yet, it is precisely in these times of chaos and loss of control that slowing down, that leaning in to that which is aspirational and hopeful in the best ways, matters most.  I cannot promise anything to my children with more fidelity than that I will love them, that I will cherish and support them.  What is a blessing, more than a commitment to those very things?  It is through blessing my children that I convey to them that what binds us is not things, it is not the materiality of life.  It is the connective tissue of hopes, dreams, love, and the solidarity of family.  In the moment I speak the words of blessing, and in the moment in which I lay my hands on my children, that connective tissue is strengthened.  

The possibility of offering a blessing is itself a kind of freedom.  It represents a choice about how to express hopefulness and gratitude.  At a time when choices are so deeply, painfully constrained, that freedom is exquisite.  I cannot go where I want. I cannot be with others.  I cannot meander in the physical world as I've been used to doing.  But sequestered with my family, I am able to talk, and to touch, and to be in ways unmarred by the dreadful pandemic that is COVID-19.  That in and of itself is its own kind of blessing.

Is Sunlight The Best Disinfectant?

I've never been someone to embrace bumper sticker slogans about life.  "You got this!"  "God only gives you what you can handle."  In fact, I kind of hate them.  I actually think it insults people who are suffering to gloss over their suffering with sports-like encouragement, or cheap theology.    Life is more complicated than that, and people deserve to be heard, to be listened to.

As someone who's experienced more than my share of emotional nadirs, I know how hard it is to pull yourself up, to go from fetal position to standing.  There's rarely been, for me, any kind of logical explanation regarding why I snap out of it, and get up and get going again.  As a parent, I think it must have to do with having children, because there are things we do for our kids that we would never do just for ourselves.  But then I think of how many people can't and don't manage that, for whom their kids don't tether them to all that is good and hopeful and future-oriented.

Sometimes I think it's just the turning of the clock that matters, the shifting from night to day.  Darkness within and without can be a combustible combination, but there truly is something about daylight.  It can feel, in a deeply cliched way, like a new beginning.  But it can also feel like a rebuke; like the sun rising is in effect saying, "I'm up.  Why on earth aren't you?"  Depending on how you take it in, daylight can be the motivation you need, or it can be the thing that makes you curl in on yourself even more.

My daughter, who recently began practicing mindfulness, described to me talking to her thoughts.  I think that's such a good thing.  The more I thought about it, the more I realized that I've been doing that my whole life.  It's how I deal with airplane turbulence and with other fears and worries.  And it brought me back to what a neurologist told us twenty years ago about our newly diagnosed autistic son.  'All of us talk to ourselves,"  she said.  "Some of us just do it out loud."  That truth has stayed with me.  Perhaps it's why I'm so attached to words.  I see them as a way not only of getting myself up and over some of life's speed bumps, but a way of connecting with others wrestling with similar challenges.  Yet I also know that words can be a barrier, that they cannot bridge every divide.  Since words are how we typically describe our experiences, and there are some experiences we cannot access, words can be the very thing that stand between human beings, no matter how much we want to connect.

Thinking about how words can connect us and also how they can keep us apart, I was brought back to my college thesis about language.  I'm not sure I was entirely conscious of it at the time, but it was fundamentally a thesis about my father, z'l, and about how his experiences during the Holocaust, and as a survivor, left him forever trapped and forever apart.  He could describe his experiences, he could tell us his stories, but we could never truly access his experiences through his words.  We could hear the words and make sense of their meaning in a technical way, but we could never get inside those words to access their deeper, truer, felt meaning.  And that was the double cruelty of surviving genocide.  It wasn't only about the direct losses--in my father's case, the murder of his mother, his three brothers, his sister-in-law and his two- and four-year old nephews--it was the imprisonment inside those experiences that was his fate for the rest of his life.

My father, z'l, is someone who got up every day, for whom I do think daylight mattered.  But that daylight was always shadowed by something deeper, darker, and even more permanent and reliable than daylight.  So while sunlight might be the best disinfectant, there are some things it can never, ever cleanse from us.

Parenting in a Time of Pandemics: What Masks Don't Protect You From

After four days in a Philadelphia hospital, where he was being treated for COVID-induced pneumonia, my son was released.  He returned by medical transport to the apartment he lives in alone for now, since his roommate left to live with his girlfriend when my son returned sick from his spring break from graduate school.

Hearing that my son was likely to be released, my husband and I made plans to head down to Philly and do a "dump and run," dropping off all kinds of supplies.  We'd done something similar the week before he was hospitalized, when we were still able to be near him, inside his apartment, however briefly.  Even then, we didn't touch.  I just blew him kisses from the hallway as we left, and gave him a mock hug.  If you want to know one thing that really sucks in the life of a parent, I can tell you that it's giving your sick child a mock hug.  Such things should never exist.

We made good time to Philly from New York City.  It was just us, a smattering of cars, and a steady stream of trucks on the highway, hauling goods this way and that.  You realize who's really, truly important in the pecking order of working folks.

We let our son know that we were five minutes away, then that we were just outside his building.  He didn't want to come down.  He's so afraid of making someone else sick...us most of all, I think.  It so happened there was a woman just to the side of the building, directing two youngish African-American women how to get into the building.  Turns out she was letting them in to help her husband, who is home getting chemo treatment for cancer.  "Bad time to be sick with that," she said.

"Do you know how we can get into the building?  Our son doesn't want to come down."  "I can buzz you in, but if you punch in his apartment number, he can let you in."  Of course I didn't recall my son's apartment number, so I texted him.  Then I punched it in and got a voice I didn't recognize, a Mr. Goldstein.  "Who are you here to see?"  I told him, and he buzzed us in.  That wasn't Sam and I'm pretty sure it wasn't his roommate, but we were in, so I'd solve that mystery later.

We took the elevator to the third floor and walked the long hallway to his front door.  The building's a converted factory, and it feels like one.  I pulled the suitcase behind me, while my husband carried the two reusable tote bags.  The suitcase had essentials, like clean underwear and socks, the PS4 Sam's sister got him for Chanukah, and a bunch of books, including All the Light We Cannot See, which I've been reading.  Since I had both a hardcover and softcover version, I was able to give him one.  I often recommend and pass books onto my son, so this was just that, in the middle of a pandemic.

The tote bags had homemade banana bread (mine), and homemade vegetable soup (my husband's).  It had toilet paper, hand soap, body soap, mandarin oranges, oatmeal packets, energy bars, a mask, a box of tissues, a bottle of Purell, some wipes, some sliced turkey, salmon salad, and a loaf of bread.  I don't know how long my son will be quarantining post-hospital, so I gave him what I hope is enough.   Of everything I could think he might need.

We got to his door, put down our stuff, and I knocked.  Then I stepped back.  He opened the door slightly and urgently waved us off.  We backed up some more.  Then he opened the door, and I could see him, in his blue face mask, gray sweats, and light brown slippers.  Before he took the bags inside,  I waved to him.  I think I blew him a kiss.  "Love you, Kip," I said.  Or was that only in my head?  I made sure I didn't cry.

Then we turned around and left.  Per usual, I desperately needed a bathroom.  The nearby gas station didn't have one I could use, so a security guy suggested we go to the train station.  We did.  It was eerily quiet.  I did my business, and was grateful for automated soap and water at the sink.  When I came out, not two feet from me, a homeless guy asked for money.  "Sorry, I don't have any on me," I replied.  Then I went back to the car.  Told my husband that I hoped that close-up exchange didn't leave me sick.  I've been trying so hard to practice serious social distancing, and in a split second, it all went to hell.  But it is what it is.

Back in the car, I remembered that for some reason, Sam had venmo-ed me some money a while back.  I never used it, and I decided he might need it more right now.  So I venmo-ed it back to him.  I saw a "Thank you!" with a big red heart emoji from him for the care package.  "Banana bread's great!"  Thumbs up and a kissy face blowing a heart from me in acknowledgement.  It all seemed so gentle and innocuous.  But it's all so indescribably awful.

When I speak to Sam, for the briefest of minutes, he sounds sick and depressed.  Am I hearing fear in his voice too, or is that the voice in my head getting in the middle of our calls?  I don't honestly know.  But I do know that even if a mask can protect you from the droplets in the air, it can't protect you from the hole in your heart, the one that's supposed to be filled with the hugs and kisses parents give to their kids.

Parenting in a Time of Pandemics

As I've watched the virus tide rising, and what was just a virus morph into a global pandemic, I've been interested to see how I have--and haven't--reacted.  I'm one of those people who can get undone by something simple at times--like not being able to find those socks I know I put down a minute ago--but give me a real crisis, and I can be weirdly calm.  I think that comes from having grown up with constant complications and challenges on the home front, so my normal has consistently been lived at an elevated pitch.  So much so that I gave up noticing a long time ago.

I dealt years ago with a full time job, a dying father, and a disabled son, all at once.  I'm not sure at the time I appreciated the toll all of that took on me, but it surely left an imprint.  Fast forward some years, and my mom is now dealing with her sixth (or is it seventh?) bout of cancer, on top of heart disease, and the general diminishments of aging.  And that disabled child is now a young man, with ongoing needs and challenges.  One of which is how to explain to him just what a pandemic is.  That one just makes me laugh honestly, because it's so utterly ridiculous.  I talk about germs everywhere, and people being sick, and why we can't travel and no, I don't know when we can take a trip, and what we'll be doing in April or May, and on and on.  I remind him to wash his hands coming and going, and not to touch the elevator buttons with his bare hands, though he can still play elevator operator in our building, announcing floors to everyone or no one, depending on who's in the car with him.

For my child with anxiety, I try to keep the news at bay, and provide other distractions and conversational topics, but real life inevitably seeps in.  It's about not having that seeping become a flood that overwhelms and terrorizes.  In fact, I took the radically opposite approach by taking her very recently to Madrid for a long weekend, slipping back into the U.S. just ahead of the latest idiotic travel ban.  We had a wonderful time.  Full stop.

Then there's my child with a fever, chills, and pounding pressure in his face.  Just a head cold?  Sinus infection?  Who knows, but I had to tell him that he couldn't come home, because his brother is on immune-suppressing meds and that's a risk we can't take.  So I'm trying to monitor from afar, checking in with the university's health services, relaying what they told me to his girlfriend, and hoping that she--being the wiser and more pragmatic of the two--will take good care of him.  And keep herself healthy and safe in the process.

Life has never been uncomplicated for me.  So this feels like an extension of that, with everyone else folded in this time.  I guess it's like going from an all-volunteer military to all of us being conscripts.  It changes everything.  Or maybe for some of us, it changes nothing much at all...