And a Life to Live: An Autism Parent’s Journey

And a Life to Live: An Autism Parent’s Journey

We were washing poop sheets for the nth time that night.

It was around two in the morning. Exhausted, my husband looked at me. His gaze softened for a moment.

“At least I get to go to office,” he said.

I paused.

We’d come to the point where driving for more than two hours one way in congested traffic had become relaxation. Because, in effect, that’s what he was saying. The drive that would probably leave anyone else frustrated and fuming had become his escape.

My whole day revolves around Krishna. His waking. His toileting. His brushing his teeth. His bathing. His eating. His therapy. His pain. And yes, his joy.

Somewhere along the way, I had left most of who I was behind. There are only twenty-four hours in a day, you see.

My mind munched on what my husband said as I resumed scrubbing the poop off.

There was a time when I played the veena. There was a time when I made Tanjore paintings. There was a time when I disappeared into novels and emerged hours later, blinking at the clock and wondering where the afternoon had gone. There was a time when my husband and I walked for hours in driving rain and wild wind, laughing like loons and returning home looking as though we had personally offended the weather.

I missed those versions of myself. In the far-off, “O, what happened to so-and-so?” way. Like how one occasionally thinks of an old friend and wonders what became of them.

None of these erosions of self happened all at once or when I was noticing. There was no morning on which I woke up and decided, “Today is the day. From today I shall stop painting, stop reading, stop wandering through bookstores, stop daydreaming, and focus exclusively on poop sheets or the lack thereof.” Life crept up on me and stole away the time for these. Krishna needed me. My parents needed me. The practical business of keeping several human beings healthy, fed, safe, and functioning expanded to fill every available corner of the day. And because there are only twenty-four hours in it, something had to give.

I remembered, though, occasionally. When I began to rage or grieve at Fate, I would console myself that I would get back to these things when life settled down a little.

When Krishna slept better.

When his gut improved.

When the therapies became less intense.

When the next crisis passed.

When.

The problem with “when” is that it keeps moving. You reach one destination only to discover another waiting beyond it. Autism is rather good at this. Life is too.

I spent years waiting for life to begin again.

But then, life didn’t need my permission to continue. It just did.

My Krishna was growing up meanwhile.

My parents were aging meanwhile.

My marriage was evolving meanwhile.

I was changing meanwhile.

Meanwhile, it turns out, is where life actually happens.

That was both sobering and oddly liberating. Because if life was happening now, then perhaps I did not need to wait for perfect conditions before reclaiming pieces of myself. Perhaps the answer was not getting my old life back exactly as it had been. Perhaps the answer was learning to recognise it in different forms.

I used to race up a grassy mound in Nehru Park at sunrise, shouting lines from Gray’s Elegy at the top of my lungs. These days, sunrise is often the time I finally get to sleep after a difficult night. Dawn isn’t when I get up fresh and eager to breathe in the crisp air, listen to birds chattering about who ate what, and brush with hasty steps the dews away. Dawn is when I think, “Finally Krishnas is asleep. Let me crash for a while.” Dawn is when I peevishly draw the curtains and close the bedroom door to try seal out the rosy, cheerful morning from creeping in.

No chance that I’m going to drag my exhausted body out for a walk; to hell with the dews and the upland sun!

But evening walks exist. On some days.

Late-night walks exist. On some days.

Standing outside under a sky full of stars for ten minutes while the rest of the house sleeps exists. On all days, unless it’s the clouds that need looking at.

A weekend trek may not be possible right now. A walk around the block is. An afternoon lost in a novel may not happen. Ten pages before bed can. A long uninterrupted stretch of painting may be impossible. A sketchbook opened for fifteen minutes is not.

The substitutions are not identical to the originals. They are not meant to be.

They are simply reminders that life is not an all-or-nothing proposition.

A great many parents spend years postponing joy because the version they want is unavailable. In doing so, they sometimes miss the smaller versions waiting nearby.

And small things matter.

More than we give them credit for.

A song matters.

And a nap.

A walk.

Some time for a memory.

A laugh.

Not because these things solve autism. They do not.

They simply remind us that we are still here. Changing right along with life. Whether we are autism parents or not, we don’t stay the same person that we were in our childhood or early adulthood. We grow, wander off the path we envisioned for ourselves or walk along it to the safe exclusion of the wilderness on all sides…. Till we are swept away by the flood that is the autism diagnosis.

The life you thought you were living vanishes around the bend before you’ve properly realised what is happening. The landmarks disappear. The familiar banks disappear. Sometimes, even your sense of direction disappears.

You flail.

You gulp down water.

You get carried somewhere you never intended to go.

And then, one day, your hand closes around a branch.

Or a stone.

Or a patch of shallower water.

You stop being entirely at the mercy of the current.

You learn how to stand.

The flood still comes.

Sometimes it sweeps you away again.

But you find your footing a little sooner.

And a little sooner the next time.

And eventually, without quite noticing when it happened, you stop trying to get back to the riverbank you started from and begin learning how to travel with the river instead.

For a long time, I thought emotional grounding meant not falling apart. Remaining patient. Remaining calm. Remaining endlessly available. Remaining regulated no matter what life chose to throw at me.

But then, this is neither natural nor sustainable.

Human beings are not machines. We are not designed to absorb years of interrupted sleep, chronic stress, uncertainty, responsibility, grief, financial pressure, caregiving, advocacy, medical worries, and the thousand invisible demands of daily life without occasionally reaching our limit.

At some point, most parents do.

I certainly have.

There have been days when I have snapped. Days when I have cried. Days when I have hidden in the bathroom for five minutes simply because it was the only room in the house with a lock. Days when exhaustion sat on my shoulders like a physical weight.

I treated these moments as failures. Evidence that I was not coping well enough. Evidence that I needed to try harder.

These days, they look different.

The goal is not never having a meltdown. Human beings do. Exhausted human beings certainly do. The goal is reducing the intensity and finding your way afterwards, back to yourself, back to your family, back to your child.

Children do not need perfect parents.

They need parents who repair.

Parents who apologise.

Parents who reconnect.

Parents who show them that difficult emotions are survivable, that relationships survive difficult moments, that love survives difficult moments, and that people survive difficult moments.

There is a strange gift hidden here. Every time we find our footing again after losing it, we teach our children that they can do the same. Every time we return, we teach them that return is possible.

There have been moments when I too have stood in the middle of the wildness that is my life and asked the same question countless parents ask.

Why me?

Why this life?

Why this road?

Why my child?

Not politely, either.

I have screamed it into the void.

Sometimes out loud.

Sometimes only inside my own head.

Usually at moments when exhaustion, fear, grief, and uncertainty arrived together and seemed determined to outnumber everything else.

The void, as it turned out, was not especially interested in answering on demand. For a very long time, it remained silent.

Or perhaps it was answering in a language I had not yet learned to hear.

Today, I like to think that the void eventually looked back and showed me some answers.

Not the answers.

My answers.

My story.

The story that empowers me.

I like to think that Krishna and I chose each other. That somewhere, beyond my understanding and certainly beyond my ability to prove anything, we agreed to walk this road together.

Would I have consciously chosen sleepless nights, gut pain, uncertainty, fear, endless appointments, and poop sheets at two in the morning?

No.

But that isn’t really the question anymore.

The question that speaks to me now is different.

Who better than me to become fit for the precious gift that is Krishna? His trust. His love. His dependence. His joy. His pain.

Easy?

Certainly not.

Worthwhile?

Without question.

Somewhere along the way, autism stopped feeling like a burden that had been tied to my back by a particularly mischievous universe. It began to feel more like the crucible of my life. A relentless, painful crucible. A crucible that has repeatedly exposed my impatience, my fears, my pride, my exhaustion, my limits, and occasionally my spectacular lack of wisdom.

But also one that has asked me to grow in ways I would never have chosen voluntarily.

Can I prove my story?

No.

But it is my truth; it helps me stand up.

It helps me find meaning.

It helps me continue.

Another parent may have an entirely different story. Perhaps their strength comes from faith, or philosophy, or community. Perhaps it comes from science, or stubbornness, or simply deciding every morning that tomorrow deserves another chance.

All of those are valid.

When it comes to meaning, joy, and empowerment, there is no one path.

There are as many paths as there are human beings.

Each of us eventually finds the story that allows us to continue walking.

Perhaps that is enough.

The poop sheets still need washing.

Krishna still has difficult nights.

Life remains gloriously indifferent to my plans.

But these days, when I find myself asking why me, the question no longer carries quite the same weight.

There is coffee to make.

Laundry to fold.

A rainbow to see, however faint.

A child to love.

And a life to live.

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