Can We Be Honest? Parenting, Aging And Autism
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Can We Be Honest? Parenting, Aging And Autism

Can I stay healthy?  Can my husband?  Nina Mogilnik takes an honest look at parenting an adult son with significant needs.

Seashells, whole and cracked. Courtesy of Nina Mogilnik
Seashells, whole and cracked. Courtesy of Nina Mogilnik

Can we be honest? This is not an idle question.  I think it’s the essential one.  Because everything rises and falls in life on whether we can be honest, and what the consequences of holding back on being honest actually are.  And who bears them.

I think about this question a lot, but maybe even a little bit more during the fall holiday season.  From Rosh Hashanah right through the secular New Year, I find myself struggling with the external pressure/expectation to embrace all the jolly, and with the genetic sensibility that leads me to want to flee from it all.  In fact, on the phone recently with a girlfriend, I shared that if it were up to me, I’d compress the calendar and have it go from August right to January, and skip everything in between.  Seems I’m not alone, since she readily agreed.

But why?  It’s not just the usual “holiday blues” issue.  It’s not just the pressure to feign gaiety, when I might be feeling its exact opposite.  It’s not just the sadness of realizing that this is another year of relative alone-ness in what seems to be a bottomless ocean of togetherness.  I’m almost used to those things by now.  Almost.

It’s other things too. It’s the feeling that I’m on a merry-go-round that I ache to get off of, to walk away from altogether, at times.  Or how the notion of a parenting journey, which conjures up images of great adventures, feels instead to me lately like an endless, exhaustion-filled slog.  From the time my younger son was diagnosed with the mysterious, incredibly ill-defined and unhelpful PDD-NOS (pervasive developmental delay-not otherwise specified), I’ve been working, and trying, and searching, and hoping, and tripping, and falling, and crying, and aching, and hoping some more, all of it in a desperate or heroic (depending on the moment and my mood) effort to get something right enough so that Noah would have a shot at a fully realized life.

Can I share how crushing it is to be dealing with deep-seated kids’ needs at a time when my own well of compassion and strength to respond feels a bit (or more than a bit) depleted? Is it awful to admit how hard it is to be around people with “normal” kids and normal lives, the ones that don’t require babysitters for 24 year olds, and constant refills from the local pharmacy? Is it okay to admit that some of the people hardest to be around are ones you really, truly love, but whose fully functional lives feel like a constant rebuke, even a torment?  Is it okay to admit how much you fake joy because being your own private rain cloud is too awful even for you?  So you joke and you congratulate, and you speak words of excitement about things that hurt your heart not because you don’t wish those good things for your nieces and nephews and your friends’ kids, but because you sense that those very things might be out of reach for your own kids, and that is just too much to bear.

I had a heart-to-heart with my older sister recently.  I love her deeply.  But I really struggle with what feels like a growing gap in our life journeys, one which has her on a path of happy, normal milestones (two weddings and a college graduation in recent years), while I’m on a path to I don’t know what, or where.  Among the things I found myself telling her was that when we moved, it wasn’t only because Noah needed a life after high school that the suburbs could never provide for him, but because I was dying where we were living.  I hated that place, with its small-minded, judgmental, mean-spirited people, the kind of place where mean moms raise mean girls, in a vicious cycle that seems to have no end.  I explained that it took me over a year to find us a home because we needed one big enough to accommodate Noah and us potentially forever, and to be a home for our other kids to visit for as long as they wanted or needed to.  It had to be close to the bridge my husband would take for his now much, much longer commute to work.  So we stretched and reached and found a place that cost much more than we intended and wanted to spend.  But our parameters were non-negotiable.

My sister, by contrast, followed me in moving, I guess because it seemed like a fun adventure. She found a place quickly.  It has lots of amenities.  Ours has none. She is reveling in all the fun of city life, and no longer commutes to work on the dreadful LIRR.  What for me was a circuitous route to a new home, a long journey borne of necessity and almost desperation, was for my sister a fun jaunt.   And from that gap, others grow.  And that is the truth that’s so hard to tell.

My world grows and shrinks at the same time.  It grows to the extent that I weave in new friends who either share my journey of parenting struggle, or who get it because they have family members who have similar struggles.  We swap names of self-direction programs, of therapists, psychiatrists, neurologists, and other resources.  There’s even an online version, where I toss questions or concerns out into cyberspace, and get back the wisdom of the crowd.  But this is a good crowd, a fellow traveling, struggling, seeking, falling forward and stumbling backward crowd.  These are the other mothers who lie awake at night.  These are my people.  And I hardly know them.  Yet I know them best of all, really.  Because we are all each other.

There are also the very few deeply, genuinely empathetic people who just accept it all, without knowing it from their own lived experience, and who don’t offer false hope or praise, but something much more valuable:  the gift of just loving Noah, of enjoying him, of taking him as he is.  And of literally taking him, once or twice a year, for a week-long visit, away from us, away from home.  It is a gift of profound generosity and caring.  And though it doesn’t fully offset the challenges, the struggles, the heartache, it opens up a space for my husband and me to regroup, to breathe, to decompress.  And during that time, it is really, truly, everything.

I deal with doctors and aides and programs that define the rhythm of my days in ways I would not have imagined when parenting was this exciting new adventure.  Yes, there is still joy.  But there is also a kind of exquisite sorrow, and a terror that attaches to all the things I cannot guarantee for my kids or for myself.  Can I stay healthy?  Can my husband?  Can my children?  What happens if things really go off the rails, behaviorally, physically, financially?

These are the things that keep me up at night, and cloud my days.  These are the things that have increasingly come to inhabit my brain, crowding out the light-hearted stuff that might offset it.  I try to find the antidote in things like long walks, outings with friends, reading great books, even doing voter outreach—all things that are not otherwise the basic substance of my days.  But there is a pain in my chest that doesn’t seem to want to leave.  It resides there like an unwanted tenant, one to which I find myself held hostage.  Even when I try to distract myself with plans for something fun and adventurous, there always seems to be that thing that slaps me back down, as if to say, “Who are you kidding?  That stuff’s not for you.  It’s for those other parents, those other people, the ones whose lives stay on track, the ones who can plan with some confidence because, you know, in their lives sh*t isn’t always hitting fans.”  And that’s the truth, the thing that’s so hard to say out loud.  It’s not self-pity; it’s the cruel reality that keeps rearing its head over and over and over.  For every one thing that works, six things don’t.  And those ratios, those proportions, are so out of whack, so painfully unbalanced, that sometimes I just feel like throwing in the towel. I’m afraid to be hopeful because every single time I am, that hope gets dashed. Every. Single. Time.

Nina Mogilnik’s professional career has encompassed work in the philanthropic, nonprofit and government sectors.  Nina is also an avocational writer, and has had a number of essays about her experiences dealing with her father’s Alzheimer’s and her son’s autism published in Haddasah Magazine and in The Jewish Week.  She was recently invited to blog for The Times of Israel and has been contributing her take on life and current events.  Nina’s proudest accomplishment — and hardest job by far — has been as a mother. Nina has degrees in philosophy from Union College (B.A.) and from the University of Chicago (M.Phil). She lives with her husband and kids (human, feline and canine) in New York City. Read more from Nina Mogilnik here.

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