The Future Is All I Worry About

My son’s sensory headphones.

Lately, I feel like I am at a loss for words.

Not because I have nothing to say.

Maybe because I have too much.

I am tired.

And I don’t mean the kind of tired that gets better after a good night’s sleep.

I mean the kind of tired that lives deep in your bones.

The kind where your body is begging you to stop, but your life does not allow you to.

There are no real breaks.

No time off.

No time to be sick.

No time for my body to fully rest, unclench, and just let go.

I wake up every morning still exhausted.

I go to work. I worry about my children. I think about appointments, therapy, schedules, daycare, bills, dinner, laundry, behaviors, tomorrow, next week, next year.

My body may be sitting still sometimes, but my mind almost never is.

It is constantly running.

Constantly planning.

Constantly trying to solve problems that sometimes do not even have solutions yet.

And lately, there is one thought I keep circling back to:

My son is going to be five soon.

Five.

It feels like such a small sentence.

But for our family, that birthday represents so much more than another candle on a cake.

It means change.

It means transitions.

And right now, I am terrified of what one of those transitions is going to mean for our family.

My son currently attends ABA full-time Monday through Friday from 8:00 a.m. until 2:00 p.m.

I work full-time.

Every afternoon, I leave work, drive to ABA, pick him up, take him to daycare, and then go back to work so I can finish my workday.

It is exhausting.

It is inconvenient.

Some days I feel like I spend my entire life racing against a clock.

But right now, it works.

Barely.

And “barely works” is something you learn to be incredibly grateful for when you are raising a child with profound autism.

Because next year, he transitions out of daycare.

And ABA still ends at 2:00.

Then what?

That question has been sitting heavily on my chest.

Then what?

I still have a job.

I still have bills.

My family still needs my income.

My husband still has to work.

But when I leave work at 2:00 to pick up my son from ABA, where exactly am I supposed to take him?

Who watches him for the remaining hours of my workday?

Who is equipped to care for a nonverbal child with profound autism and significant support needs?

Where are these programs everyone assumes must exist?

Because where we live, I cannot find them.

There isn’t some magical after-ABA program waiting for us.

There isn’t an endless list of caregivers trained and ready to care for children with profound autism.

There aren’t countless childcare centers available once a child ages out of traditional daycare.

And this is the part of autism parenting that I don’t think enough people understand.

Eventually, the system starts running out of places for our children to go.

When they are little, there may be daycare.

There may be ABA.

There may be preschool.

There may be early-intervention services.

And then they get older.

The needs do not disappear because they had a birthday.

Our children do not suddenly become independent because the calendar says they are five.

But somehow, some of the supports that made life possible begin disappearing.

I have talked to other parents.

I have read their stories.

And over and over again, I hear the same thing.

Eventually, someone has to stop working.

Usually, one parent becomes the full-time caregiver because there simply is not another option.

And that scares me.

Because our family cannot survive on one income.

That is not me being dramatic.

That is not me worrying unnecessarily.

That is our financial reality.

We have a mortgage.

Groceries.

Utilities.

Insurance.

Therapy expenses.

Children to provide for.

A life that requires two incomes.

So when someone says,

"Don’t worry about next year yet."

I know they mean well.

I really do.

But sometimes I want to ask:

How can I not?

Because almost a year sounds like a long time until you are a parent desperately trying to figure out what happens when the clock runs out.

Time is funny that way.

You blink, and the baby you were just holding is turning five.

You blink, and the daycare years are over.

You blink, and suddenly the problem you kept telling yourself you had time to figure out is standing right in front of you.

And yes, I know my son is still young.

I know he is not even five yet.

I know a lot can change in a year.

A lot can change in five years.

His abilities can change.

His needs can change.

Our circumstances can change.

New programs could become available.

New opportunities could open up.

There are so many things about his future that I simply cannot predict today.

I know all of that.

But knowing that does not make the fear disappear.

Because there is also a possibility that his level of support needs will remain significant.

There is a possibility that he will always need someone with him.

There is a possibility that childcare, school, therapy, employment, adulthood, housing, and long-term care will continue to require an enormous amount of planning and advocacy.

And even writing those words makes my heart hurt.

Not because there is anything wrong with my son.

Not because I love him any less.

But because I know how difficult this world can be for people who require lifelong support—and for the families who love and care for them.

Sometimes when I start worrying about what happens when my son turns five, my mind goes even further.

I think about the families who are already there.

The moms and dads raising profoundly autistic teenagers.

The parents caring for adult children who cannot safely be left alone.

The families who have spent decades arranging their entire lives around caregiving.

The parents who had to leave careers because there was simply no other choice.

The families who are still fighting for services, respite, appropriate programs, safe housing, and people they can trust with the person they love most in this world.

The parents who are getting older themselves while quietly carrying the question that I think may be one of the most terrifying questions a parent can ever ask:

Who will take care of my child when I no longer can?

My son is almost five, and that question already finds its way into my mind.

So I can only imagine the weight of it when your child is twenty-five.

Or thirty-five.

Or fifty.

My heart aches for those families.

Because when I worry about what I am going to do for the few hours between ABA ending and my workday ending, I realize that this is only one small piece of a much larger problem.

What happens when daycare ends?

What happens when school ends?

What happens when the programs designed for children disappear because your child becomes an adult?

What happens when services become harder to find instead of easier?

What happens when a profoundly autistic child grows into a profoundly autistic adult who still deserves safety, dignity, meaningful care, community, and a life where they are valued?

Where are those families supposed to turn?

I do not know yet what my son’s future will look like.

Maybe that uncertainty should comfort me.

Sometimes it does.

But sometimes uncertainty is exactly what scares me.

Because when you love someone this deeply, you want desperately to know that they are going to be okay.

And there are no guarantees.

So yes, I know he is young.

Yes, I know things can change.

Yes, I know I have time.

But I also know that countless families before me have reached these transitions and discovered just how few options there are.

Their reality matters too.

Their stories matter.

And maybe part of why this fear feels so heavy is because I am beginning to understand that I am not just worrying about next year.

I am catching my first glimpse of a question that families like ours may carry for a lifetime:

What happens next?

People sometimes tell parents like me not to worry so much about the future.

To stay in the present.

To take things one day at a time.

And I understand the sentiment.

But when you are raising a child with profound autism, the future is not some distant abstract thing.

The future determines everything.

Will he ever be able to communicate what he needs?

Will he ever be able to live independently?

Who will care for him when my husband and I are gone?

Will he be safe?

Will people treat him kindly when I’m not there?

What happens with school?

What happens after school?

What happens when he becomes too old for programs designed for young children?

What happens when he is ten?

Fifteen?

Twenty?

Thirty?

Who helps us then?

These are the thoughts that creep into quiet moments.

These are the thoughts that sometimes keep me awake.

These are the thoughts that sit beside me while I drive to work, pick up my children, make dinner, fold laundry, and go through all the ordinary motions of life.

I can be laughing with my children while a tiny voice in the back of my mind is whispering,

But what are we going to do next year?

That is what people do not always understand.

Fear of the future does not mean I do not appreciate today.

It does not mean I am missing the beautiful moments.

It does not mean I do not have faith.

It means I am a mother trying desperately to make sure my child will always be cared for.

And sometimes love looks like worrying.

Sometimes love looks like planning years ahead.

Sometimes love looks like lying awake at night trying to solve a problem that does not have an answer yet.

I wish I could tell you that I have figured out what we are going to do.

I haven’t.

Right now, I genuinely do not know.

And maybe that is the hardest part.

I can usually handle hard things when I know what comes next.

Give me a problem and I will research it.

Give me an appointment and I will show up.

Give me paperwork and I will fill it out.

Give me a fight for my child and I will fight it.

But what do you do when there isn’t an obvious next step?

What do you do when every possible answer seems to create another impossible problem?

I do not know.

And today, I am allowing myself to say that out loud.

I do not know what we are going to do.

That scares me.

There is a harsh reality to raising a child with profound autism that does not always fit into inspirational social media posts.

Sometimes there is not a beautiful lesson at the end.

Sometimes there is not a solution wrapped neatly in a bow.

Sometimes a family is simply standing at the edge of another transition wondering how in the world they are going to make it work.

That is where I am right now.

I am tired.

I am worried.

I am overwhelmed.

I love my son more than life itself.

And I am scared of the future.

All of those things can be true at the same time.

And I know I cannot be the only parent lying awake wondering the same things.

Maybe your child is aging out of daycare.

Maybe therapy hours do not match your work schedule.

Maybe childcare has become impossible to find.

Maybe you have already had to leave a career you loved because there simply was not anyone else to care for your child.

Maybe your child is already an adult and you have been carrying these fears for years.

Maybe you are staring at the next transition and wondering:

How are we supposed to do this?

I do not have an answer for you today.

But I want you to know I am asking the question too.

Because this is part of the reality of profound autism.

It is beautiful love.

It is fierce devotion.

And sometimes, it is terrifying uncertainty.

For today, I will keep doing what I have always done.

Showing up.

Working.

Driving back and forth.

Making the appointments.

Researching the options.

Asking the questions.

Loving my children.

And trying to figure out tomorrow while surviving today.

One day at a time.

Even when I’m scared of where those days are taking us.

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

🌿