Did They Know?

Did they know?

The way the people in our life all gradually fell away.

Planned without us.

We felt we no longer fit in.

We watched as they hung out in their lawn chairs, relaxing, chit-chatting.

Them having no understanding of the hidden blessings they were given…just the ability to stay still.

So simplistic. Yet so grand, to a family like ours.

One who knows to be grateful for such moments.

But we didn’t know…before…special needs parenting…

So maybe they didn’t either.

Did they know how it pained us to watch their child, younger than ours, sitting quietly, patiently, playing so effortlessly.

Independently.

While we chased. While we worried. While we had to stay inches apart, hands clutched tight.

Because our son’s escape, his elopement was inevitable.

911 calls, the sounds of search parties above our heads and dark retention ponds flooded our brains.

Did they know I didn’t want to be a “helicopter parent”.

But that I had to be.

I’m not sure that I could have joined them.

But they could have asked.

They could have asked if we wanted to go to dinner, even just once.

Did they know we heard them as they organized without us. We watched as they scattered into their homes to get ready, then back into their cars to leave.

Together.

Did they know how left out we felt?

Maybe we could have. Maybe it would have been a restaurant that we tried over and over again until it got easier.

Or maybe we could have called the caregiver.

But they never tried.

They could have asked if we wanted to hang out at the Thanksgiving gathering.

We could have at least had the opportunity to say no.

Or…maybe?

Maybe one of us?

Maybe one of us with the big kids?

Maybe just the big kids?

Instead we had to find out with that awkward look on their face at the door, our older kid’s friends’ laughter echoing in the background.

I wonder if they were embarrassed…

I wonder if they knew how sad we were.

I wonder if they knew how often I cried.

I wonder if they knew how isolating and lonely this life was and still is for us.

I wonder if they knew that we just wished they would include us..sometimes.

That they would include our kids, our son with severe needs.

I wonder if they knew how sleep deprived we were. That my bedtime was four am. And my wake up was 6am.

Did they know how much I craved for adult interaction and that a phone call would have made my day?

Did they know that those stopped too…the daily chats and check-ins. The “hey, how is your day going? texts.

Ghosted.

Did they know I missed girls nights and date nights with my husband?

Did they know that our son’s therapists were my only friends most days?

I wonder if they knew how many jobs my husband worked to pay for out of pocket therapy costs that our son needed.

I wonder if they knew I was alone at night without help, that there were nights I couldn’t tuck my other children into bed or read them stories because their brother required 1:1 supervision.

I wonder if they saw me watch my life change, as I had to stay inside more often, for therapies.

For safety.

Did they see me watch my life through my kitchen window…the one I could no longer have?

The one that I watched slip away with each passing day.

I wonder if they knew how heartbreaking it was for me as a mom to miss my older kids growing up because I had to take care of their little brother.

I wonder if they knew how I longed to be outside with both of them watching them play and socialize.

I wonder if they have an inkling of the sibling guilt I live with everyday.

I wonder if they knew how lonely my older kids  were.

How they missed being a family the way they watched other ones gather outside, every day.

While they played alone, observing what they should have had. What they deserved.

A family.

Together.

Playing.

Laughing.

Building memories.

A big sister and a little brother.

A big brother.

Both.

Siblings to an autistic younger sibling.

One that had needs that outweighed their own.

Or did they?

Or were their needs just pushed aside because us parents are left with little choice?

No respite. No help. No funding. 

I wonder if they knew how hard that was for them.

To be alone in a sea full of neighbors. To wonder if others knew what their lives were like behind closed doors.

“The screaming, the fighting, all the noise.”

“The backlash the whiplash and throwing the toys.”

Lyrics pulled from our daughter’s song. The one she wrote about the life of a special needs sibling.

Did they know? Did they hear?

The aggression.

Did they worry that their kids wouldn’t be safe?

Is that why?

Did they ever think about any of that?

Did they ever see how sad our other two kids were? How lost and broken?

How left out our older kids felt as the rug was pulled out from beneath their lives.

How they had to adapt to changes. How they had to grow up so fast.

Innocence lost.

Did they know about the tears my son cried when he heard the delightful squeals of his friends going down the water slides?

Did they think we didn’t know?

All the cars parked in a straight line down our street.

Visitors coming out of cars, directly across from our home, carrying birthday presents.

My older son, riding his scooter as he watched friends enter homes and backyards. 

Friends, he had just had at his own birthday party a month before. Or friends who never showed for that either.

Was it because he was different? Because he too had autism?

Or was it because they didn’t want his little brother to come?

So they chose to invite neither?

Did they know that they made my older kids feel like an outcast as much as they treated our youngest son as one?

Were they not included, punished for having a brother who was different?

Did they know and not care? Because it didn’t concern them?

Did they not want to be bothered with the work and time it takes..

To learn about those who are different.

To teach their children about others who don’t look or act the way they do.

Was it too much?

To ask the questions?

To educate themselves?

Or maybe they simply didn’t want to listen.

They wanted their conversations to be light and fun.

They didn’t want to be bombarded with the hard truths of special needs parenting.

Did they know I hated hearing myself talk?

That I felt like every word out of my mouth was an explanation for my kid’s behaviors.

Or what he learned that day or a milestone he had finally achieved .

Because my life became autism.

Eating, sleeping and breathing autism.

Learning all things autism.

All of our lives now revolving around one child and his extra needs.

While they went on with their lives.

Ours stopped. Ours halted with the sound of screeching tires when that traffic light turns pink.

One blue folder.

One diagnosis.

And our lives flipped off like a light switch.

Do they know how hard it was to accept the changes?

To let go of a life we had built here for us and our kids?

To be forced into a prison. Our home.

Surrounded by alarms and locks that need keys to open doors.

Our children never to open their front doors freely again. Always the need to knock or ring a doorbell.

The fear of messing up. Of forgetting to lock a door behind them.

The pressure they felt to keep their brother safe.

Did they know?

Did they know it would all eventually crush them?

That anxiety, depression, and ptsd would consume them?

Did they know they would need therapies?

Did they know that they could have helped?

That they could have been there for them?

By simply including them?

Asked them how they were. Invited them, made them feel like they belonged in a world they now felt so out of place.

Did they know that seeing them instead of seeing right through them could have made a difference in their lives?

Because they felt invisible to others.

They felt like they were invisible to us.

And we didn’t know because they didn’t tell us.

Until now.

So maybe some didn’t know.

Or maybe they did and didn’t care.

I wish they had.

I wish they would have remembered that they were just kids.

And they needed kind adults and friends.

They needed to be accepted for themselves, for their faults and their hurts.

They needed others to include their brother, so that they felt like they belonged too.

Did they know?

That we were just two parents trying to balance the impossible.

Did they forget?

That all three of our children like waterslides?

That there were days when they were all invited.

Before autism.

And they all went down together.

The ways siblings should.

Did they know it still could have been that way?

If they had just asked.

And that by asking, it could have made a world of difference in all three of their lives and ours.

*For those of you who always made us and our family feel seen and heard. Thank you. I hope you know who are. We are forever grateful.

If you know a family with special needs…

Just ask.

Ask the questions.

Learn. Teach your children.

And invite.

Invite the parents.

Invite siblings separately.

Invite a special needs child.

Invite the whole family.

Give the opportunities to special needs families who so desperately need the support and community, as they try to navigate living in such an isolating world.

Written by, Sheryl St. Aubin

Sheryl St. Aubin and her family reside in sunny, Florida. She has been married to her husband, Matt for fourteen years and is a Mama Bird to three beautiful, socially unique, children. While juggling this crazy life, she homeschools her youngest son and writes at her blog, Three Little Birds-Raising Kids On The Autism Spectrum (FB). She attempts to be a tour guide for other parents by  sharing her story and trying to raise awareness for the special needs community. Her writing has been featured on Finding Cooper’s Voice, Filter Free Parents, Her View From Home and Love What Matters. You can follow her journey on Instagram: threelittlebirds321 or on Facebook at Three Little Birds – Raising Kids on the Autism Spectrum.

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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 our journey. You can also follow us on Facebook, subscribe for exclusive videos, and subscribe to our newsletter.