Wednesday, April 24, 2013

The Anticlimax

Everyone experiences anticlimactic moments in their lives. Things build up, our attention is focused, anticipation leaves us existentially salivating, and then.

BANG! It happens! (Whatever "it" is).

And then there is the inevitable slow down, a return to normalcy (of sorts). And this often brings with it feelings of emptiness or unfulfillment.

We all get it. It happens. But why?

I think that part of it has to do with an expectation of transformation. Somehow, things will change for the better (or worse). Maybe the sunshine will take on a new hue. Maybe work won't be so stressful. Maybe...something.

After I finished my prelim exams--quite a huge climax after 12 or so years of higher education--I had an anticlimax in a huge way. I felt listless, depressed, challenged to do the most basic of activities from folding laundry, to commenting on student papers, to showering after a 4-mile run.

Gross, I know.

And so, taking a lesson from a certain variety of Buddhism, I leaned into these feelings. I tried to confront them and understand them so that I could make my peace with them. I discovered something in this quiet, reflective discomfort.

Sure, my peers who went through similar processes felt a bit of let-down and anticlimax, but they weren't as beaten up as I was. The reason for this is simple: on some deeper level, I felt that the rest of my life would be transformed, that my struggles were over in some way.

I thought autism would be transformed.

It sounds strange, I know, but I think that a year of furious work subconsciously primed me to expect a sweeping change. Maybe words would come for my son. Maybe the screaming and head banging would settle. Maybe sleep would come for all of us.

Of course such thinking is absurd and self-destructive, but I think it was happening at a different level, and I recognized the feeling, a feeling that has recurred over and over again these past 5 years.

But this was a new recognition.

It was liberatory.

It is transformative.

So many of the autism dads I know throw themselves into their work, burning the candle not at both ends, but from every direction. They fight, but their fight is against themselves--a rage against a life that didn't quite turn out the way they figured.

It's killing us, and it's destroying our families.

Has this realization led to nirvana, a letting go of all desire and living mindfully? Not so much. But it has led me to rethink how I approach fulfillment professionally and personally.

I can work, and I can work hard, without letting my work be something that it is not. I can try to recognize the pathologies of subsumption. I can approach my child as he is and accept that though I can work to make life easier for him and for all of us, nothing I do will breathe life into past fantasies of the way that life was "meant to be."

In so doing, I can approach my work, my life, my son with humility and openness, and I can be the man, the scholar, the father that I never imagined I could become.

Monday, April 22, 2013

Varieties of Silence

It's been a while. I've just finished successfully defending my PhD preliminary examination (PhD comps), so this semester has been a bit...hairy. With that done, I'm happy to be writing again on other things. Ironically, or fittingly, I feel drawn to writing about this prelim process.

Those of us with special needs children know that life always goes on. Whether we work in the Academy or corporate America or in any other capacity, there is no pause button and there is no slow-motion option. Our work does not slow down, and frequently our employers won't think twice about giving us special consideration. I've met many talented, brilliant people whose careers have been derailed or put in holding patterns because their workplace does not understand or care about what it really means to have a child with special needs.

Our jobs can consume us.

I experienced this first-hand this past semester. Scrambling to read (and understand) hundreds of books, teach classes, work as an administrator in my department, go to professional conferences, publish, grow professional relationships, avoid alcoholism, be a husband, be a father, be a human.

Things fall apart; the center cannot hold.

I didn't ask for help because I didn't expect it. I didn't even talk about it.

My silence was mine alone and I did not dare break it.

And this was a mistake.

My body broke down. The night before I was to fly to a conference in Boston, I was so violently ill that I blacked out, hitting my head on the bathroom floor. I woke up with my wife standing over me, horrified, as my body tremored on the bathroom floor. I crawled back to the bedroom,  terrified not of my own safety, not of my children's lives without a father, not of dying an ignonimous death on a rental property bathroom floor. No. I worried about the professional implications. I worried about the line on my CV that would go missing. I worried about tenure--still 10 years down the line.

A few hours later and I realized: this is fucked up. Something needed to change. I needed to start talking.

And so I did.

I'd like to say that I became a firebrand, shouting Zarathustrian-style about the need for workplace accommodations, nailing 95 theses to the doors of my graduate professors, staging rallies on the university quad. While undeniably awesome to think about, these things did not happen.

Instead, I simply said "no."

I said "no" in a practial sense. I started refusing to take on unnecessary work when others could do it. I ducked out of "optional" social events. I avoided committees.

But I started saying "no" in a deeper sense.

I'm saying "no" to a life of constant anxiety and normativity.

I'm saying "no" to guilt over my needs and the needs of my family.

I'm saying "no" to quietly acquiescing to structures, institutions, ways of living in modern America that don't recognize our shared humanity, our need to support one another.

And I feel a "yes" building...

A "yes" to laughter.

A "yes"to peace.

A "yes" to compassion.

Throughout hundreds of long, long nights,  I have sat on my son's bed working while he bounces, hoots, and does anything but than sleep. I have by turns felt smugly superior and bitterly resentful that my peers were able to move through their careers clear-headed, at their leisure and that we would be judged by the same criteria.

But this is sickness, and I need to fight it.

I will fight to change the contours of my silence.

I will fight in my own small way for recognition for parents of special needs children, recognition of the additional struggles--professional, financial, physical, emotional; I will fight those discourses that erase these struggles both within the special needs community and without.

I will fight to listen to other silences. Just as my son's silences are pregnant and full, so too are the silences of everyone around me. I will hammer at the silences between us, especially between fathers. I will tell my friends--my small, quiet community--that I see them and that I hear their silence.

I will tell them that I am proud of them because they hear it from far too few people.

I will open myself and invite them to speak.

I will break my silence not only for them, but for all of us.




Friday, March 1, 2013

We Are Powerful


Power.

Sometimes fathers of children with special needs feel like we have none of this, that we are subject to the vagaries of other’s power.

The power of medical and psychological institutions that swing around metaphorical scalpels in darkened rooms, cutting us and our families.

The power of schools and IEPs to grant our children therapeutic crumbs while their agents pull condescendingly sweet faces.

The power of our employers to silently remain unsympathetic or outwardly hostile. The power of “I hope your home-life is not interfering with your ability to do your job.”

The power of echolalia and preverbal vocalizations.

The power of words that stick in our mouths like fists.

Sometimes we feel powerless, impotent, weak.

And these are the times that we need to each other’s strength. These are the times when we need to be lifted up, to have someone pull at us so we can feel our strength as we pull back.

We are powerful.

We fight.

Every day, even the darkest days that start in the middle of the night, we are fighting. We are fighting the powers that be, and we are winning. Few people understand what it is to truly fight, to fight in the silent interstices of daily life.

To fight not to give up on grocery shopping as a family.

To fight to have a meal in public.

To fight a culture that, in its best moments, pities us.

To fight for our families.

To fight despair.

We are not weak. We are not defeated. We are fighters and we are powerful. We need to remind each other of this.

Wednesday, February 13, 2013

Silences


This too is a truth: there will be silence.

There are the silences in the night, pregnant with dread of wakings.

There are the silences at work, where our realities slide off our co-workers and bosses and rest on our shoulders.

There are the silences from family and friends who just don’t know what to say.

There are the silences that hang heavy between us and our wives, sometimes held between our clasping hands, sometimes filling the distances that we fight to close.

There are the silences that hold our tongues fast, leaving us choking and gasping as we try to fill them with something.

There is the silence that deafens us with it pulsing, disorienting sussurus—the silence that meets us when we ask for an answer. For something. Anything.

There will be silences, but the words can come.

Patience.

Hope.

Wednesday, February 6, 2013

Still Waters

And the waters were still today.

No epiphanies but no regrets.

No leaps forward but no slides backward.

No rage.

No despair.

No tears.

No joy.

Still waters.

And my breath shall disturb them

No more.

Tuesday, February 5, 2013

Uncertainty Principles


I don’t have words of optimism today. I can’t always be the object of an appreciative “I just don’t know how you do it,” because some days I don’t do it.

Nothing out of the ordinary happened today; in fact, there were noticeably less major meltdowns and other traumas. Jamie had the boys for most of the day while I worked.

And I got stuff done.

Not only did I work my administrative magic, wading through e-mails with verve and poise, but I even logged in a few hours of reading for my PhD exams (a mere two months from today). I had a Panini at the Italian bistro near campus, chatted up some colleagues, and left school well-satisfied.

I kept rocking at home too. I moved furniture around like a boss. This is a regular activity in our house as Liam is both a climber and a Shiva-like destroyer of home décor. Today I managed to fit two Ikea dressers into a single undersized closet and arrange them in such a way that all the drawers opened enough to access all their contents. My engineer father would have been proud. Maybe.

Jamie and the boys came home from a therapy outing at the aquarium, we started snack, put on a movie in the kitchen, and put on a pot of afternoon coffee.

And I pulled Liam off the counter he was climbing to reach the DVD player.

Then I stepped in half-masticated food that was slowly accumulating across the kitchen floor.

And I pulled Liam off the counter he was climbing to reach the DVD player.

Then I walked Liam to his bedroom so both of us could walk away from his screaming and pinching jag.

And I pulled Liam off the counter he was climbing to reach the DVD player.

Then I turned the gas off of the stove—Liam likes to turn these fascinating little knobs, but not enough to turn on the burners.

And I pulled Liam off the counter he was climbing to reach the DVD player.

And I pulled Liam off the counter he was climbing to reach the DVD player.

And I pulled Liam off the counter he was climbing to reach the DVD player.

And then I sat. On the kitchen floor. In front of the counter. Beneath the DVD player to block Liam while I ate dinner.

And I sat thinking of the night to come, and it was like looking down the barrel of a gun.

***

Until you live with someone with autism, you can’t really understand what living unpredictably really means. Example: every night—every single night for the past 4.5 years—I have gone to bed knowing that I would probably be woken up randomly. I tell this to people and I think they can imagine the exhaustion (maybe a little), but it’s not the exhaustion that kills. It’s the uncertainty. It’s trying to fall asleep quickly because you don’t know how much rest you’re going to get before you’re woken up, but it’s also a heightened awareness, a straining to hear a bouncing of bed springs or hooting so that you don’t just barely fall asleep and then have to wake up.

Anxiety.

I went to bed at 9:00 pm last night, hopeful for maybe a little extra bit of  sleep. Liam woke up at 9:10, just as I was dropping under.

This is what other people cannot fathom.

Being certain that no matter how mundane or spectacular a day has been, no matter how you plan, no matter how well you prepare yourself, the only thing predictable about autism is that it is so God-damned unpredictable.

I know that there’s a cliché silver lining implication in what I have written above, but I’m not going to pull it out. Not today.

There are days like this too, days where you put your face in your hands not because the day has been more challenging or heartbreaking than usual, but because you know that tomorrow is another day. Another day of who knows. And you also know, deep in your tired bones, that today is not yet done.

Some days you just can’t be the smiling target of another “I just don’t know how you do it!”

And that’s okay.

Who knows what tomorrow will bring?

Monday, February 4, 2013

Carpe Momentum


Carpe diem. Seize the day. Live each day as if it were your last.

Bullshit.

It doesn’t work. Can’t work.

Leaving aside the obvious shenanigans we’d all get into if we acted like it was our last day (a literalization of the saying anyway), I’ve always been suspicious of this approach to life. Well, maybe not “suspicious.” Perhaps “incredulous” is more apt.

A simple truth to juxtapose with this simple aphorism: the bulk of any given day, even a pretty good day, tends to be pretty lousy. If we put any random day under a microscope, it reads a lot like Hobbes’s take on life: “solitary, poor, nasty, brutish, short.”

I feel this way about days when there’s more autism than boy.

They are solitary days of the worst kind—surrounded and alone. Constant action without interaction.

They are poor days. Days where we scramble to pay for an extra set of therapies—gymnastics, swimming, horseback riding—something that might make a difference. Loans paying loans paying for hope.

They are nasty and they are brutish. My arms and my wife’s are covered in scratches, bruises, and the occasional bite-mark. We’ve had blackened eyes. We’ve been asked the solicitous questions in the doctor’s office that leave us stuttering “are you serious?”

But they are not short days.

Up at 5 out the door by 7:30 work until 11:30 pick them up from school feed them lunch squeeze in alternating work periods between therapies work out for thirty minutes make dinner go through two-hour bedtime routines while we squeeze in a little more work get them asleep work for 3 more hours watch TV for 30 minutes go to bed by 11 wake up at 12:30 sitting through bouncing-screaming-laughing and rotating every two hours until he falls asleep again at 3:30. Up at 5…

These days are not short.

Carpe diem? Fuck that.

Carpe momentum. “Seize the moment.”

Even though a day can be an existential marathon, there can be moments—second winds—that take the edge off, even make the struggle worthwhile.

***

Today was not short. An early am head-butt after 3 hours of sleep, clawed cheeks, screaming car-rides to and from school. Continual pinching after afternoon therapy.

But then there was this. There was me walking him away from me whenever he pinched—admonishing “there’s no pinching”—and gently closing the door to his room. After about 10-15 cycles, Jamie woke up from a nap, tag-teamed in, and I went downstairs to box and run. Forty-five minutes later, I came upstairs and plopped down on the kitchen floor—exhausted and disgusting.

Liam walks over, kneels down, puts his hands on the back of my calves, and rests his face against my knee for just a moment. And then he bounds away, bouncing and hooting, in search of the iPad or DVD player.

He didn’t pinch, scream, or bite.

I didn’t deflect his contact to protect myself.

For a moment, a breath, we were just there, touching. He didn’t ask for anything from me. And I couldn’t have asked for more.

Carpe momentum.