Thriving Instead of Surviving

I came across an old post on my personal Facebook page that I wrote two years ago, on April 5th, 2019.

That was a pivotal day for me, one that both shattered my naive perception of life and changed the way I live it.

The following is an updated and edited version of that post from two years ago:

“A harsh Autism reality hit our household yesterday.

Evie was thriving for about two months, preschool was going amazing. 

Then things changed.

Her teacher got transferred to a different location, her EA had to go on a sudden leave.

We were back at square one.

Evie started regressing as soon as her EA whom she loved was no longer on staff.

One step forward, two steps back.

Something at daycare was unsettling her.

She can’t tell me what’s wrong with words, so it’s up to me to read her behaviour.

Yesterday, I discreetly watched staff working with her from a distance when I was picking her up and they were outside playing.

What I saw made my stomach drop.

Evie was trying to communicate with a staff member who was purposefully ignoring her. She attempted to reach out for a hand, the only way she knows to ask for help, but her hand was pushed away carelessly in annoyance.

After being rejected a few times she dropped to the ground in frustration. Evie  cried and thrashed on the cement pathway for about a minute while the woman stood at first indifferent, then frustrated, scolding her and grabbing for her to stand up while looking down at her with what appeared to me to be disgust and impatience.

With scorn.

Definitely without any compassion.

I met with the daycare director today, and voiced my horror at what I witnessed. I didn’t want that woman interacting with Evie at all from that point.

The director awkwardly admitted that after Evie’s designated EA had left two weeks ago, they asked for a staff volunteer to step in as Evie’s support while they advertised the position, but no was willing.

No one but that awful woman with her scorn would agree to work with Evie. Apparently she took pride in not being daunted by challenging behaviours.

I saw the way she handled ‘challenging behaviour’ with my own eyes, and how traumatic it was for my vulnerable three year old daughter to endure.

It was my choice, I could continue to send Evie there but she would be left to her own devices without the support needed to keep her safe, if I wasn’t comfortable having scorn woman being her primary caregiver.

What would you do?

I pulled her, of course, that second.

I scrambled to set up alternate care for the rest of April, successfully but it was a temporary fix.

I explained to Evie tonight that she was not going back to preschool and she didn’t have to see the mean lady ever again.

Her entire demeanour changed.

Her body relaxed in that moment even though I hadn’t noticed it was tense and she was all relief and smiles, she gave me a clinging hug and kissed my face a few times over.

Mom figured it out.

Mom finally discovered what was causing her emotional dysregulation.

My heart is breaking knowing she endured weeks of being misunderstood, mistreated and brushed aside by the people I entrusted to nurture and care for her.

I’m an anxious mess, feeling pulled between being a mom and my responsibilities at work.

Evie is safe and happy now and that’s my number one priority, that’s all that matters.

Isn’t it every parent’s priority?

But it’s harder for parents of kids like Evie that are so vulnerable, keeping them safe.

The reality is there are so few safe, reliable or readily available daycare options for high needs kids in this province, ones with trained staff prepared to work with kids who have different needs.

Even an inclusive one like this one (that we waited 7 months to get into and was supposed to have the ability to meet Evie’s needs) can remove a special needs child from care at any time.

There are so few staff trained to work with special needs children, that even in an inclusive daycare you are putting blind trust into people who might not know anything about the unique needs of your child.

I’m learning just how many parents end up having to quit working because there are so few daycare options, and never ending waitlists for the few that do exist.

A week after I wrote that post we listed our house on the market and uprooted our life to move to the rural community where we live now, thirty minutes away from the small city that was our home, where I grew up.

We moved because we were out of options, the only thing left on the drawing board was the off the cuff idea I came up with to register Evie in the Pre-K program in the school where I worked, after finding out that Evie would be guaranteed a spot because of the small pool of applicants in the community.

The catch was that we needed to have a local address on the application because of catchment rules.

With preschool abruptly ending, and knowing Evie had been turned away from Pre-K where we lived in the coming fall, it was our only feasible option, unless I was prepared to quit teaching, which wasn’t a financial possibility.

Before committing to this crazy idea, I needed to be sure all other avenues had been investigated.

I made endless phone calls to directors of the few inclusive daycares and programs within commuting distance. I talked to people on the school board and had a meeting with the superintendent. I emailed back and forth with our MLA, trying to understand how children like mine were being turned away from Pre-K and other programs designed and funded specifically for them.

Every direction I was pointed in by those I reached out to lead me in a circle, or to a dead end, or to another waitlist.

 It was then that I had an epiphany.

The social system that I had placed complete trust in up to that point was not designed for families like mine.

Before Evie and Autism came along, I was just a run of the mill person with  basic needs similar to the majority of the population, and I breezed through every system with comfort and ease.

I was totally oblivious to the uphill battle so many were fighting, to how many people fell through the cracks, the gaping holes in the system.

I used to believe that our society ensured it’s most vulnerable citizens received all the care and support that they needed and deserved to live their best quality of life.

It became clear to me just then that there was no one coming to our rescue, no lifeline would be thrown.

If we wanted help, we were going to have to help ourselves.

It was up to me to create an environment where my family could thrive.

To seek out a circle of steady support that we could to lean into in trying moments.

To find a community where we would be seen, valued and accepted instead of brushed aside, or worse yet, merely tolerated.

So we moved with a vision of a different life.

Things have been different since my epiphany on that pivotal day.

Here we are two years later, thriving instead of surviving in a life that is still filled with challenges, roadblocks and some really, really hard days.

I’ve accepted that we will always have an uphill battle getting Evie the support she needs within the structure of our society as it exists today, but we don’t wallow in the cracks of social construct anymore like we used to.

These days I walk down the middle of the sidewalk pulling Evie behind me in her little red wagon.

We take up as much space as we need to while returning waves and smiles to our neighbors, many of whom know us from the community school where I teach and Evie attends.

We have no choice but to play the cards life has dealt us, but we can change the game by choosing who we invite to the playing table, and where we decide to set that table up.

I may not have a winning hand. No pairs, no straight, no full house.

No matter, because I’ve got a full table now, a fulfilling life, and a full heart.

Written by, Jill Kakoske

Jill Kakoske is wife, middle school teacher, lover of pets and Mom to one daughter, Evie, who is Autistic. She lives in small town Saskatchewan, Canada, and enjoys spending time reading, relaxing with friends and family and writing about her experiences being Evie‘s mom. You can find her on Instagram and Facebook under Evie The Explorer or check out her website www.evietheexplorer.com 

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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.

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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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