Soon, You’ll Get Better

“It will get better.”

Words I hear on a daily basis.

From loved ones.

From other Autism parents.

Ones that have more years in this journey than I do.

The ones I call veterans.

Better?

What does that even mean?

I think “better” means something different for everyone.

I used to think that about my Dad.

I’d convince myself that his Cancer wasn’t that bad.

For five years he fought a war he really couldn’t win.

In the end Cancer took everything…including his life.

But for five years..especially the last two he really wasn’t “living”.

He was just fighting to survive.

Another year, another month, another day.

I’ve been fighting a war too..Autism.

In some ways, Autism is a lot like Cancer.

It takes things away.

It changes your child.

It changes you.

The words…

The diagnosis.

The stages or levels.

Severe.

The statistics.

The chances that anything will ever be like it was before..

Before you heard them.

At first you can’t believe it’s happening.

Some are in denial.

But then you start to notice, to accept the changes.

Autism invades, takes over every part of your life.

All of a sudden you’re making appointments, living in doctor’s offices and seeking out every new treatment available.

You know there’s no cure.

But you hold on to this hope..

That it will get better somehow.

There must be a therapy or drug to help right?

That this thing that has taken over will go into remission..

Could it just go away for a while?

For good?

You just want to be “normal” or “healthy” again.

You pray for miracles and that you’ll beat the odds somehow.

That you’ll be that one percent.

So you can live again.

One wish…

To get your life back.

To feel better.

To not need the doctors, medicine or treatments anymore.

You want to feel well..

Enough to see friends and family.

You realize every day you get is a gift.

You wonder why you took for granted all those healthy days. You find yourself wishing you had taken advantage of them more, had more adventures, traveled..because we always think we have more time.

You didn’t even realize how easy you had it before…

I didn’t..until Autism.

I didn’t know to be thankful for simple things like unlocked doors or the ability to hang out with my neighbors outside freely on a sunny day.

Until that freedom was gone.

Until Autism took it away.

Just like an illness, Autism isolates you from your friends and loved ones…even if you’re the caretaker.

It takes up most of your time.

You spend most of it trying to help your child “get better”.

Or keeping them safe from what may harm them…

With sickness it’s usually germs or perhaps they’re too weak to move freely, so you fear injury..or worse death.

But with Autism it’s everything..

Safe from themselves.

Safe in their own home.

Safe from the outside world that they don’t understand.

And..

Safe from a world that is unkind and does not understand them.

Some people would say you can’t compare the two.

That an incurable disease and a disability like Autism aren’t the same.

But I live daily in fear that my child may die.

That his lack of awareness for safety and his surroundings will end in me losing him.

That if something happens to me..

He won’t survive.

I feel like I have to live forever.

I spend my time daily looking for new treatments and yes, even cures.

I always wonder if I’m doing enough.

Should I be seeking some experimental trial in another country?

Does he need second opinions and different doctors to help him?

Medication?

More therapy?

Full time ABA instead of public school?

People say to..

Have hope.

Pray.

But the hope can be exhausting.

The dreaming and wishing that something might change…

To wake up to another day of heartache.

When you watch one child injure another..

It’s soul crushing.

We do all the therapies and have tried so hard to “fix” it.

But the aggression continues.

And he will continue to get bigger and stronger.

And I feel like a failure.

It feels hopeless.

I wonder if this is how my dad felt..

When things really started to get hard.

When Cancer invaded so much of his life and body that it took over.

He never said so.

He was always so upbeat and positive..literally until the end.

“He made the best of a bad deal”

No matter how much it took..his ability to eat, to walk, to spend time with us.

He was seeking out new treatments as he sat in his bed in Hospice.

He never gave up.

I know I’m not supposed to.

I know I need to just clean up the blood from my older son’s nose and move on.

I need to wake up after a completely sleep deprived night and do it all over again.

Make the phone calls.

Fight for his rights and services.

Argue with insurance companies and Medicaid.

I’ll try to figure out how we are going to pay for this.

The thousands of dollars it will take to help him.

The lifetime of piled up bills that he will accumulate..that we can’t pay.

I’ll do everything I have to..

Fill out the never ending paperwork.

Set up the appointments.

Do the therapies.

Make schedules.

Push for compliance.

Surround him with the best people.

Go to the IEP meetings.

Lock the doors.

Hide the knives.

Tape the shampoo bottles.

Pick up the dumped out toys.

Put the bike lock on the refrigerator.

Clean the urine filled couches, beds and floors.

Scrub my walls that have food and drinks sprayed on them.

Put the couches and pillows back together.

Pick up the papers he threw everywhere.

Soak up the water and wash a whole load of towels from cleaning up the messes in the bathroom.

Pull him out of my washing machine.

Chase him when he tries to run.

I’ll never sit down.

Because he never sits down.

I’ll just continue to look out that window as I watch my older kids grow up without me.

Just miss it completely.

Miss life.

Miss socializing with adults.

See other children younger than him run freely in the street.

Isolate myself in this house with him because taking him outside is too hard.

Too dangerous.

But I have to

Keep trying.

But I might get hurt.

He might get hurt.

Or worse.

But what’s the alternative?

I can’t give up.

My dad didn’t.

So we keep going.

I keep getting hit and kicked.

I keep getting toys and food thrown at me.

I do the “ABC’s” to see why he’s doing it to his siblings.

I keep watching him smash his head into the flat screen or glass door wall.

I ignore the behaviors.

I walk away.

I try time outs.

I remove him from the room.

I exhaust every option the therapists have suggested.

I get backpacks to hold him so he can’t run.

I use visuals and timers.

I research gps units.

I put him in the world.

I take him to restaurants.

I take him to Target.

Even though he jumps out of the cart.

Even though I have to chase him around the store.

Even if he refuses to use public restrooms.

Because soon it will get better.

Right?

Because just like with my dad, I have to say that.

I have to believe it somehow.

It’s what keeps me going.

It’s what kept him going.

It’s what keeps us all going.

That faith..

That blind hope that things will be ok somehow.

“Better” in our world could be anything…

Maybe..

It’s going out as a family.

Figuring out the right therapies.

Getting the perfect mix of medications.

Getting them potty trained.

Trying a new food.

Learning how to communicate on a device.

Watching them make a friend.

Seeing them play with their sibling.

Hearing their first word.

Or..

You.

Accepting that this is your new reality…

“This won’t go back to normal

If it ever was

It’s been years of hoping,

And I keep saying it because

‘Cause I have to”

Accepting that this is forever.

Finally knowing..somehow..you’ll get through it.

So tell yourself.

Everyday.

When it gets really..

Hard.

Scary.

Dark.

Hopeless.

Isolated.

When “forever” hits you.

Say it out loud.

As you tuck your baby in at night.

“You’ll get better soon”

“Cause’ you have to.”

This piece was inspired by the song “Soon You’ll Get Better” by Taylor Swift and my dad’s five year battle with Lung Cancer that he lost a month ago. He never gave up. He had this overwhelming blind faith that things would get better somehow. He survived a cancer that had a nine month survival rate…we were blessed to have him for five years. I truly believe it was his positivity that got him through even his darkest days. I’m trying hard to follow in his footsteps.

Written by, Sheryl St. Aubin

I’m Sheryl.. my husband and I were blessed with three beautiful, bright, brave and bold children…Finn (5), Landon(8) and Lilliana (12). Finn-a.k.a. Baby Bird, was diagnosed with Autism Spectrum Disorder (severe) when he was two and a half years old. Landon was also diagnosed recently. Our life has been an adventure. This past April, I decided to start sharing our life and created a Facebook Page and blog. You can follow us on Facebook..
https://www.facebook.com/followyourflockwiththreelittlebirds/
I wanted to create a place for knowledge, encouragement, support, and comfort from people who understand…who walk in the same shoes.

Finding Cooper’s Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you’re never alone in the struggles you face. And once you find your people, your allies, your village….all the challenges and struggles will seem just a little bit easier. Welcome to our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.

Interested in writing for Finding Cooper’s Voice? LEARN MORE

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Finding Cooper's Voice is a safe, humorous, caring and honest place where you can celebrate the unique challenges of parenting a special needs child. Because you're never alone in the struggles you face. And once you find your people, your allies, your village....all the challenges and struggles will seem just a little bit easier. Welcome to my page!

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