Parenting During a Pandemic: Mother's Day Reflections from a Mom to her Kids

Another Hallmark holiday is upon us:  Mother's Day 2021.  I don't honestly recall last year's holiday, perhaps because we were still in the throes of a pretty terrible bout of COVID in New York City.  We were deep in the dueling sirens phase, listening to ambulances race back and forth between the hospitals we live near.  I'm sure my daughter, an event planner and occasion-marker extraordinaire, organized her siblings to celebrate mom, but I honestly cannot recall the details.  That's no reflection on my daughter; it's solely a reflection on my inability to remember many things.

This Mother's Day, I wanted to pause to acknowledge the only thing--or rather people--who make it possible for me to participate in this day:  my children.  They've lived quite a year, from Mother's Day 2020 to Mother's Day 2021.  One graduated from law school; another finished out a college year; a third saw all of his special needs programs shut down for in-person participation, which left him without anything to do for months on end.  But the pandemic also brought all my kids under one roof for the first time in nearly a decade.  That was an incredible thing.  And lest anyone think that 'incredible' only has positive connotations, let me say that it also meant having five adults and two dogs in an apartment that once felt pretty spacious and came rather quickly to feel like a studio.  Lots of stuff to contend with, and even more laundry than usual.  My eldest hadn't been home for any extended time in nine years, since he'd left for college.  I could see that he was a bit rusty with our rhythms, especially regarding his autistic younger brother.  And even with his sister, he'd missed living with her and her particular approaches to  cohabiting, so lots of things needed to be negotiated, and renegotiated.  It was not always smooth sailing.

But, we somehow made it through the year, with my daughter thriving in school and socially, with my eldest passing the bar exam and transitioning to his new role in the Navy, and with my other son managing with surprising equanimity to tolerate the total disruption of his program-focused life.  I like to think that we didn't lose our collective minds because we had long ago established something that bonded us to one another--come hell, high water, or a raging pandemic:  enough love and loyalty to tide us over, to carry us through.

I'm typing this as a sit in a little home office--really just a sliver of space with back to back desks and computers for my younger son and me.  I don't love the smallness of the space, but I love the space itself because its walls are covered with the things that give me joy:  loads of family photos of adventures we've taken through the years.  I can look up and see my husband and me in the main plaza of Quito, Ecuador, all of us on the terrace of a restaurant in the Dominican Republic, and all of us once again, wearing our life vests before a jet ski outing in the Florida Keys.  Rather than feeling sad over the at-home restrictions of the past year, I can look at these photos over and over again and revel in the gratitude I feel for the opportunities I and we have had to be together in so many extraordinary places.  

And while I might struggle to remember what last Mother's Day was like, I can tell you that this Mother's Day, looking back on a year in which all of us had COVID, in which all of us were challenged to stay focused on things forward-, positive-, and future-looking, I am reminded of all the ways in which being a mother change, surprise, overwhelm, sustain, exhaust, and inspire me.  But I am also reminded that this is the first Mother's Day for me without my own mother.  It was the one occasion, as I recall, when my father gave my mother gifts.  I never asked him why, but I imagined it was because my father was especially grateful for the gifts my mother gave him that enabled him to be a father, a role he mastered in all the ways that can or should matter.  But that, of course, is for another Hallmark holiday...

Going Off Line to Learn How to Live Again

So the other day--I believe it was March11th--I shuttered my LinkedIn account.  I have downloads of my archived LinkedIn content, but I doubt I'll look at them.  I suppose there's some amount of loss in all this, of connections, of content, of being a part of.  But not really.  I very belatedly realized that I'd first signed on to LinkedIn in 2007.  So I'd been a part of that networking community for fourteen years.  And I had a whole lot of nothing to show for it.

Truthfully, I'd never used LinkedIn with professional expectations.  In recent years, I'd given up even on the pretense of using LinkedIn for professional networking and posted increasingly--if not exclusively--personal content.  Everything from observations about and reflections on my kids, to comments on what I've been reading, and what I've learned from various Jewish ed classes.  I became more cynical and discouraged about the nonstop self-promotion and branding that seem to characterize much of LinkedIn--and all of social media, it seems.  There was nothing I wanted to brag about, nothing to brand, nothing I had to sell.  So why bother?

I thought I'd mind being off LinkedIn, and maybe I will at some point.  It's only been about a week, after all.  But I was pretty confident that no one would know I'd left.  Or more accurately, no one would care.  And it was that revelation, that my absence would matter to exactly no one, that made me realize that my time on social media was an utter, and sad, waste.  If I'm going to be invisible, let me just be.  Without the grasping for attention, without checking to see how many people read or commented on a post of mine, without doing the math to calculate what percentage of my 900+ followers cared at any given time about anything I had to say.  

I scrolled through my list of connections before I shuttered my account, and I realized that at least two of them were deceased.  That seemed the perfect exclamation point, somehow, for this entire undertaking.  I was imagining I was part of something that even I didn't much care about being a part of.  I was imagining that being on LinkedIn mattered to my so-called career, when it had no relevance at all, since I wasn't actually pursuing any leads or connections that were career-related.  What I was doing, I think, was imagining that I had a toehold in a world that everyone thinks you must have a toehold in to matter.  It's as if not having any kind of social media presence makes you truly worth less, outside the bounds of all those folks keeping busy doing, and posting, and being and branding.

Maybe I've just consigned myself to utter irrelevance.  If so, it would just validate feelings I've had for some time now that as the world races ahead (toward what, who knows?), I'm left standing still, befuddled by all the change happening around me, and unable to keep up.  I'm the horse and buggy lady in a world of flying cars.  I'm just a person, after all, and an infinitely insignificant one.  I suppose to some folks that sounds sad.  And maybe it is.  But maybe, in my embrace of my smallness, of my footprint that barely registers, of my voice that no one hears, I'm embracing something of value.  Maybe in the quiet, in the self-imposed exile I have chosen, there is something better.  Or at least something not worse than that thing I pretended to chase, half in, half out, never believing that I belonged anyway.

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...