Invisible cognitive load. Chronic vigilance. Decision fatigue. Uncertainty.

All wonderful, accurate terms.

What do they mean?

I shoot upright in an instant. From deep sleep. Zero to 100 kmph in a nanosecond. For a moment I don’t understand why. Is it morning? Night? Where am I? What?

Then I hear a soft gurgle.

Krishna is awake. He has pushed off the bedclothes and pulled off his diaper.

“Krishna! Bathroom!”

I snatch him up and dash to the loo. Just in time. He settles on the WC and the medicine-induced diarrhoea gushes out.

He’s all done and plays happily under the tap. Wow, I think. Bath also done. I feel rather proud of myself. Krishna’s father brings his clothes and helps. I am drenched from head to toe; I need a bath.

Atishooo!

A hot bath. Pronto. A cold is in the offing.

“G! Krishna needs to poop!”

My husband is bashing down the bathroom door.

Hurry hurry hurry…

I dash out.

Again, just in time.

Now breakfast. Krishna happily eats steaming hot rice and dal mashed with fresh ghee. Drinks his milk without a fuss. Hands washed. All good.

He sprints up the stairs unbelievably fast. A second Usain Bolt. Neither his father nor I is that fast.

Uh oh.

A trail of poop all the way to the loo.

Krishna is already perched on the WC.

It’s too much to expect to be just in time all the time.

New medicines? Should I adjust the dose? Timings? Call the hospital for a follow-up. Warn the therapy centre. Check diaper stock. Does he have two changes of clothes in his bag? Is it time for his medicine yet? Do I have to buy more? Oh, need to plan and prepare his mid-morning snack. What do I make and pack for his lunchbox? Did I remember to get a new bottle of medicine to keep at the therapy centre? Oh, I forgot to send that mail and schedule a call. Did I pay the bills? Maybe my husband did, need to check. Mom is calling. The maid is late. Dad’s medicines are over…

It never ends.

See?

Invisible cognitive load.

Chronic vigilance.

Decision fatigue.

Uncertainty.

This is one of my stories as the parent of a child with profound autism.

One of the easier ones.

Other parents of children like Krishna have their own stories. The details change. Seizures. Feeding tubes. Self-injury. Elopement. Nights without sleep. A child who cannot tell you where it hurts. A young man who is six feet tall and needs help bathing. A daughter who cannot be left alone for five minutes. A parent sleeping lightly because a door opening at 2 am is not merely a door opening at 2 am.

Safety.

Food.

Sleep.

Toileting.

The physical care of another human being who may grow taller and stronger while the parent grows older.

This is some of the weight profound-autism parents carry.

For parents of children with lower support needs, the load is different.

Somewhere else, another autism parent is staring at a message from school.

There was another incident today.

Why did my child scream?

What happened before that?

Did someone say something?

Was he rejected by his peers again?

Is the classroom too noisy?

Why isn’t therapy helping him cope better?

He did so well last year. Why this aggression now? Why the complaints this year?

Is it the teacher?

The work?

Puberty?

Anxiety?

Is he being bullied?

Is he bullying someone?

Am I making excuses?

Am I failing to see something?

Should I speak to the school?

Should I wait?

Should I push?

Should I stop pushing?

Another parent watches her daughter hovering at the edge of a group, wanting so badly to join, getting it wrong again. She stands too close. She talks too long about the thing she loves. The other girls are not cruel exactly, which somehow makes it harder to explain. They simply turn, ever so slightly, toward one another.

Her daughter comes home and says she doesn’t care.

Does she?

Another parent has a child who seemed to be doing wonderfully.

School was going well. Friendships seemed easier. The morning routine had settled. There had been no calls for months. The parent had even begun to loosen something inside. Not completely. Just enough to breathe without checking the phone every ten minutes.

And then, today, a meltdown.

Out of the blue.

Except parents learn to distrust out of the blue.

What did I miss?

What changed?

How long has this been building?

Is she coping, or has she simply become very good at looking as though she is coping?

The stories are different. The fears are different. The needs are different. The stakes are different.

But look at the parent:

Invisible cognitive load.

Chronic vigilance.

Decision fatigue.

Uncertainty.

All there. In different avatars.

How chronic? How intense?

That varies, just as autism varies.

And the parent varies too. Because no two human beings are the same. No two autistic people are the same. No two autism parents are the same. And so, even the same experience hits different people differently. Not to speak of autism, which may look different at night than it did in the morning. And so, the stress begins…

We speak of stress as though it lives entirely inside the difficult thing.

Does it?

Isn’t stress the distance between what life asks of us and what we have left to answer it with?

Difficult things ask more of us. And when we don’t have enough left to answer, there is a gap.  A distance. Stress.

And how much is this distance?

It changes. From experience to experience. From person to person. From year to year. Sometimes from morning to evening. What we have left with which to answer—that is our capacity.

And capacity is not fixed.

It too changes from experience to experience, from person to person, certainly. But it also changes within the same person, at different times.

Because while the same demand can land differently in two lives, the same person may carry something in January that flattens her by August.

Sleep matters.

Money matters.

Health matters.

A good marriage matters. A difficult marriage matters.

Grandparents nearby matter. Grandparents who themselves need care matter.

A flexible job matters. A boss who has had enough matters.

Another child preparing for exams matters.

A body entering menopause matters.

A bad back. A migraine. A bereavement. Debt. A friend who shows up with food. A neighbour who complains. A therapist who listens. A doctor who dismisses. A husband who notices. A husband who does not.

All of it matters to grow or shrink capacity.

Sleep changes it. Money changes it. Health changes it. Support changes it. Knowledge changes it. Practice changes it. Being believed changes it.

A good cup of coffee certainly changes it.

People call this self-care sometimes.

The phrase used to irritate me because of the inherent assumption that everyone, if they care enough for themselves, can gift themselves time. As an autism parent, enormous chunks of my time vanish into caregiving. And since a day has only 24 hours, me-time shrank at an exponential rate till it almost completely vanished. Then as Krishna’s therapy times increased and he settled into it, some me-time began to reappear.

Still, the phrase self-care would irritate like that fragment of stone in your shoe. It isn’t irritating enough for you to stop walking altogether; it is irritating enough that your discomfort spikes with each step.

Self-care?

A sleepless, frazzled me, already pushing my limits, needs another list like I need a heart attack.

Drink water. Exercise. Meditate. Sleep eight hours. Meet friends. Practise gratitude. Book the appointment. Take your supplements. Prioritise yourself.

Another list.

Another person to keep alive.

Me.

And I’d feel, to hell with self-care; let me just be. Still and quiet. A short period of time with zero demand on me. Time for me to just gaze blankly out of the window or to read fiction, if the mood struck me.

Today, I am a life coach who speaks the language of self-care a lot, and I’d tell past me: And this, my dear, is exactly the first step in self-care. Doing something that lets you regain a small piece of the self that was in danger of dissolving into nothing. Even if the doing looks like sitting still, doing nothing.

Self-care, practising gratitude, and prioritising oneself can look like exactly this: carving out a moment or two in space-time in which one can become invisible.

Unavailable.

An observer and not a doer.

Sometimes, not even an observer.

Just the space and time to be, in stillness.

This may be a strange digression, but hear me out.

I was in conversation with an architect a few years ago, and we were discussing vaastu.

“Vaastu says such and such should face east. So you go ahead and fix the room, the seating, so that everyone has to face east. Suppose I sit like this and turn my head this way, what will you do?”

He mimed sitting in the prescribed position.

Then he turned his head north.

Gleefully.

I remember that conversation like it was yesterday.

That mischief. That exuberance.

Unforgettable.

Today, my circumstances—and the circumstances of many autism parents—can feel like that room, with everything conspiring to make you face a specific direction.

And yet, what is stopping you from sitting on that chair and turning your head north?

An initial crick in the neck?

Practice long enough, and facing that metaphorical north becomes habit.

Because facing that metaphorical north is how I build capacity. Facing that north means actively, intentionally snatching at an opportunity or creating an opportunity for those moments of peace. For me, this can look like:

“Can you keep an eye on Krishna?”

And I sneak away to hide on the terrace on a weekend evening.

The sunset is subtle, the breeze is a balm. The birds twitter merrily.

I note all this, but it doesn’t quite sink in.

It will, when I take this memory out in the dark or in the middle of a chaotic mess, turning it over and over in my mind.

A precious talisman.

Another day, twenty minutes appear from nowhere, and twelve useful things are waiting to swallow them.

Email.

Medicines.

Vegetables.

Laundry.

Sometimes they do.

And sometimes there is coffee.

Still hot.

And so, capacity can be replenished.

There are also days when no space opens. Krishna needs what he needs. The phone rings. Dad’s medicines are over. The maid is late. Dinner remains stubbornly uncooked.

I can rage against the absence of space. And sometimes I do.  Extremely loudly.

Sometimes, I wait.

And once in a while, I find more capacity by deciding what is redundant in my life and putting it down.

Of course, not everything can be put down.

Krishna needs what he needs.

But not everything I carry is Krishna.

There are obligations I have outgrown. Expectations I no longer believe in. Things I continue to do because I have always done them. Things I do because I can, which is not the same as needing to.

And of course the phone will ring again. Someone will need me. There will be medicines to order and emails to answer and some new mystery to investigate. Krishna will do something I did not anticipate. It is still too much to expect to be just in time all the time.

The room is still the room.

But I turn my head north.

Gleefully.