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...