The Parts of Profound Autism No One Sees

It has been a minute since I have written anything.

Not because I haven't wanted to.

I have thought about writing more times than I can count. I have had sentences come to me while driving, while folding laundry, while standing in the kitchen making dinner, or while lying in bed completely exhausted at the end of the night.

But that is the funny thing about time.

It has a way of passing so quickly.

I think every parent understands that feeling. The weeks don't just pass—they fly. Sometimes I swear Monday morning comes, I blink, and suddenly we're staring at another weekend.

Life becomes this constant race against the clock.

Work.

School.

Pickups.

Drop-offs.

Dinner.

Baths.

Laundry.

Cleaning.

Packing things for the next morning.

Trying to spend a little time with your children somewhere in between.

Trying to remember the permission slip, the therapy paperwork, the groceries, the appointments, the thing you promised your spouse you wouldn't forget.

And eventually everybody needs to get into bed so we can wake up and do it all over again.

Parenthood is exhausting in its own right.

But life with severe, profound autism can add layers to those days that are difficult to explain unless you have lived them.

Our evenings aren't always simply dinner, baths, and bedtime.

Sometimes they include meltdowns.

Sometimes they include trying to figure out what our son needs when he can't tell us.

Sometimes they include pacing, screaming, sensory overwhelm, frustration, aggression, or self-injurious behaviors.

Sometimes our entire house feels like it is holding its breath, trying to determine what might set something off and what might help bring him back to a place where he feels safe again.

And lately, things have been harder.

Our son has been struggling with more aggression and becoming upset much more easily than what is normal for him.

The hardest part is that we don't always know why.

Is he hurting?

Is he tired?

Is something sensory bothering him?

Is he frustrated because he wants something and can't communicate it?

Did something happen that we don't understand?

Is his body simply overwhelmed?

When your child cannot tell you what is wrong, you become a detective all day long.

You watch facial expressions.

You pay attention to sounds.

You look at eating, sleeping, bowel movements, routines, environments, transitions—anything that might give you a clue.

And sometimes, despite everything you know about your own child, you still don't have an answer.

Yesterday was one of those incredibly hard days.

The strange part is that the morning had been wonderful.

Both kids were happy at drop-off.

There were no major struggles.

No tears.

Nothing that made me think the afternoon would be any different.

When I picked my son up from ABA around 2:00, he was so happy to see me.

He had had a wonderful day.

He came out smiling, and I remember feeling so happy.

Those good reports mean so much to me.

I don't think people always understand how much a simple, "He had a great day" can fill the heart of a parent whose child struggles.

For a few minutes, everything felt easy.

Normal, even.

We got into the car and headed toward daycare, just like we have done countless times.

He was exhausted and fell asleep during the drive, which is pretty typical for him.

And then we arrived.

I woke him up.

And it was as though a bomb went off.

There really isn't another way to describe it.

He immediately started screaming.

He threw himself onto the ground in the parking lot.

Then he began hitting himself in the face.

Hard.

Not gently.

Not something you can simply redirect with a quick, "Hey, buddy, don't do that."

He was hurting himself.

And I was trying desperately to stop him while also getting him safely inside.

Eventually I managed to get him through the doors.

For a moment, I thought we were getting somewhere.

I thought he was starting to calm down.

And then he grabbed his iPad.

He began slamming it directly into his own face and head.

Again.

And again.

And again.

Hard.

I grabbed it immediately.

I stopped him.

And the daycare staff jumped in beside me.

I cannot say enough about the people who care for my children.

They helped calm him.

They helped redirect him.

They helped create space around him.

They never made me feel as though he was a burden.

They never looked at him as though he was "bad."

They simply saw a little boy who was struggling and a mama who was trying desperately to help him.

I truly could not ask for better humans to be around my children.

Eventually, we got him settled.

And then one of them looked at me and said something along the lines of,

"We've got this, Momma. You go back to work. He's going to be okay."

So I walked out.

I held myself together long enough to walk through those doors.

Long enough to cross the parking lot.

Long enough to reach my car.

And the second my butt hit that driver's seat, I broke.

Completely.

There was no graceful tear quietly rolling down my cheek.

There was no deep breath and I've got this.

I sobbed.

The kind of crying where your chest hurts.

The kind where you can't catch your breath.

The kind where you keep wiping your face, but the tears are coming faster than you can wipe them away.

Once the floodgates opened, I couldn't stop them.

I sat in that parking lot and cried for probably twenty minutes.

Because watching your child violently hurt himself is traumatizing.

I don't know how else to say it.

It is terrifying.

It is heartbreaking.

And it is a helplessness I would never wish upon another parent.

Every instinct inside of you as a mother says,

Protect your baby.

But what do you do when the person hurting your child is your child?

You block his hands.

You take away whatever he is using.

You hold him if he will allow you to.

You try to redirect.

You try to stay calm.

You whisper that he is okay.

You tell him Momma is there.

You search his face desperately for some clue about what is happening inside of him.

And all the while, somewhere inside your own head, you are screaming too.

Please stop hurting my baby.

Even when the person you are begging to stop is him.

My husband stayed on the phone with me while I cried.

He tried to comfort me.

And I realized again how often the two of us operate in survival mode.

We are both pretty good at holding things together.

Sometimes maybe too good.

You learn to function through things that would have once brought you to your knees.

You handle the meltdown.

You clean up the mess.

You make the phone call.

You speak to the therapist.

You check for injuries.

You go back to work.

You make dinner.

You take care of your other child.

You keep moving because you have to.

There isn't always space to process what just happened.

So you shove it somewhere deep inside yourself and keep going.

Until you can't.

And when one of us finally breaks, we really break.

We go from being the strong one—the one saying, "Okay, we'll figure this out"—to sitting there sobbing uncontrollably because suddenly the weight of everything we have been carrying becomes too much.

Yesterday, it was me.

And underneath all of those tears was one thought I hated admitting out loud:

I wish this wasn't our reality.

I wish this wasn't my child's reality.

And I want to be very clear about what I mean when I say that.

I don't wish away my son.

Never.

I love that little boy more than words could ever explain.

I would walk through fire for him.

What I wish away is the suffering.

I wish he didn't become so overwhelmed that hurting himself somehow became the only response his body could find.

I wish he could look at me and tell me,

"Mom, my head hurts."

"Mom, I'm scared."

"Mom, I'm tired."

"Mom, I don't want to go inside."

"Mom, something feels wrong."

Anything.

I wish I could ask him what happened and hear an answer.

I wish communication wasn't something we had to fight so hard for.

I wish I could climb inside his world for just five minutes and understand what everything feels like to him.

What was too loud?

What felt wrong?

What frightened him?

What hurt?

What changed between that happy little boy walking out of ABA and the child screaming and hitting himself a short time later?

Because if I knew, I would fix it.

God, I would fix it.

That is one of the cruelest parts of this journey.

Sometimes you would do absolutely anything to help your child, but you don't know what they need.

So you guess.

And you research.

And you watch.

And you learn.

And you try again tomorrow.

There are parts of profound autism parenting that aren't easy to photograph.

They don't fit neatly into an inspirational quote.

There isn't always some beautiful lesson waiting at the end of a hard day.

Sometimes a hard day is simply a hard day.

Sometimes a mother sits in her car in a daycare parking lot and cries until she has no tears left because she just watched the person she loves most in this world hurt himself and she couldn't understand why.

Sometimes she wipes her face.

Checks the mirror.

Takes a breath.

And drives back to work.

Because life doesn't stop just because your heart is hurting.

And I know there are mothers and fathers reading this who understand exactly what I mean.

Parents who have put their bodies between their child and a wall.

Parents who have blocked punches their child was throwing at themselves.

Parents who have hidden hard objects.

Parents who have restrained hands just long enough to prevent an injury.

Parents who have sat awake afterward replaying every second and wondering what they missed.

Parents who have cried in bathrooms.

Parking lots.

Showers.

Closets.

Cars.

Anywhere they could find five minutes where no one needed them to be strong.

I see you.

I understand you.

And I know sometimes words like "You're not alone" almost feel impossible to believe.

Because when you are standing in the middle of one of these moments, you can feel like the loneliest person on earth.

You can look around at families living lives that seem so much easier and wonder why yours has to be this hard.

You can love your child more than life itself and still desperately wish certain parts of their life were different.

Both things can be true.

Love does not erase exhaustion.

Gratitude does not erase grief.

Hope does not erase fear.

And accepting our children exactly as they are does not mean we have to accept their suffering without wishing we could take it away.

I don't have a beautiful ending for yesterday.

I don't have some profound lesson that magically made the experience worth it.

I just have the truth.

Yesterday hurt.

I cried.

My husband hurt with me.

Our son struggled.

And then somehow, like families like ours always seem to do, we kept going.

Today is another day.

We will keep watching.

Keep learning.

Keep advocating.

Keep loving him fiercely.

And keep trying to understand a world he cannot always explain to us.

And to the parent who had a day like mine yesterday—to the one who is exhausted, frightened, overwhelmed, or sitting somewhere crying where no one can see you:

I see you.

Your child is not the only one struggling in those moments.

Sometimes your heart takes the hit too.

And you are allowed to admit that.

You are allowed to say,

This is hard.

You are allowed to wish your child didn't have to experience these things.

You are allowed to grieve while still loving them with every single piece of you.

That is the complicated truth of this life.

And maybe that is exactly why I needed to start writing again.

Thank you for spending a few moments here with me.

Until next time…

Keep finding beauty, honesty, and hope—even on the hardest days.

With love,

The Honest Autism Mom

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