The Path to Normal

A few evenings ago I finally took the leap and joined an online Autism support group that I’ve been eyeing up for a very long time.

It’s a smaller, more personal support community called Coops Troops, filled with interviews, live chats, videos, supports and resources for a small monthly fee.

I had put off signing up for so long and kept finding myself pulled back to it; Coronavirus isolation pushed me to jump on it.

So I leapt, finally, and with much excitement.

I did not know that I was unintentionally opening up my own Pandora’s box.

A whirlwind of confusing emotions and thoughts took root in my brain almost instantly, while I was simply trying to write a casual introductory post to say hello to my new group.

I found myself locked in an internal battle, trying to decide how to describe my daughter’s Autism. I write about Evie a lot on my personal Facebook page, so I wasn’t sure why I was struggling with this.

I felt pressure to paint an accurate picture. I knew that the people in this group walked the walk, talked the talk, knew the inner workings of Autism on an intimate level. It felt more important to use the right words when sharing in this space.

I ended up writing ‘My 4 year old daughter was diagnosed with severe autism 2 years ago and is currently non verbal.’

I hit enter.

I re-read my post.

I had a gut wrenching wave of panic.

I got body sweats from adrenaline while staring at the post on my phone.

Were those the right words?

Non verbal? Ok, technically, yes, although that term has never felt like it fit right on Evie.

Severe? That couldn’t be accurate. Was I exaggerating?

My thoughts circled.

Evie does score as needing the highest level of supports on every checklist and questionnaire. But it doesn’t really mean much, because she’s still so young.

Right?

Did they use the word severe at her diagnosis? I searched through my memories. 

No.

They simply said she is on the Autism Spectrum Disorder. That they would do more testing when she was six.

Panic.

Why did I decide to use the word severe?

More panic.

My mind raced to dredge up past conversations I had shrugged off and buried away, not willing to consider them prior to now.

Like when the director of Evie’s previous ‘inclusive’ daycare flat out told me no staff was willing to work with her while her regular EA went on a sudden leave from work. That no one else knew how to handle her, that she was too physically demanding and was a safety hazard to staff.

Or the time my sister casually mentioned that she thinks Evie will live with us forever, and when I scoffed about her absurd comment to my husband later he didn’t react with disdain, rather a shrug of acceptance and a ‘maybe’.

And then there was my mom’s friend who works with kids on the spectrum as an EA who told her she doesn’t think Evie will be verbal until eight or nine years old.

Other people just didn’t understand that Evie’s severity is only a result of her still being such a young age.

Isn’t it?

I reflected, with discomfort.

There’s always been enough wiggle room for me to brush struggles off as minor, as a stage, to push away any inklings that Evie might ever become one of those severely Autistic adults.

Non-verbal, severe, that wasn’t in the cards for us, not in the long run.

Was it?

Using the term non-verbal was never a worry for me because I viewed it as a temporary thing. Evie has always ‘talked’, she has been counting, labelling, singing songs, echoing  and scripting from Dora (in both English and Spanish, at that!) before she was even a year old.

Thus, in my view, my girl was a chatterbox by nature, so despite not being able to communicate with her own words yet, she ‘talked’ to herself already, and would be talking to us soon enough. She would not script and echo for the rest of her life. That isn’t a thing.

Is it?

Maybe, but not for my beautiful little girl, my baby. She’s still just a toddler. We have time on our side.

Why do people project thoughts of such struggle onto our future, and so early in the game?

Then it hit me. Right in that moment.

Evie is not a toddler. Not anymore. Hasn’t been for awhile.

She’ll be five soon enough.

She’ll go to Kindergarten with diapers in her backpack, and without the skills to make a friend.

Without the ability to even say her own name.

Was it time to start using the word severe?

I’d never physically written or spoken that word to describe her before, yet there it was.

Had I held off joining this group for so long because I knew it would push me to consider a future that might include these words?

I spent the next 24 hours stalking the page, reading posts, watching interviews, obsessing over glimpses into lives of parents and their children on the severe end of the spectrum, parents with adult children who still live with them and always will.

It wasn’t easy to watch.

But I couldn’t stop.

I had taken the leap and there was no taking it back.

But something started to happen to me, as I sat entranced, discovering the stories and lives of these people.

Something inside me loosened, giving me enough slack to breath freely, to be open.

It was while watching the coolest mother and daughter duo, Val and Jess from Autistic Interpretations, that I suddenly realized I wasn’t in panic mode anymore.

I was overwhelmed, no doubt.

But not panicked. Not filled with dread. Not feeling hopeless and fearful.

Val said some things that really stuck with me, and I’ve been carrying them around since, pulling them out when I have a quiet minute to think about what they really mean.

Val said it doesn’t feel strange having her grown daughter still living with her, it feels normal. Theirs is a different kind of life than most, sure, but it’s just a normal life for them. It’s how it has always been and always will be, and that’s okay. It isn’t a sad thing.

She said it’s a happy life.

I think I’m finally ready to start imagining what our own future could look like, with an open mind and heart.

This group is showing me that words like ‘non-verbal’ and ‘severe’ are really just words describing a small part of the big picture, they can and do coexist alongside words like ‘happy’ and ‘normal’, in the sense that normal is whatever feels right and natural for you and yours.

As for me and mine, as long as we stick together on our journey, I know it will be a happy one. It might be hard, but I’ve seen proof now that happy and hard can be part of the same story.

I have to believe that as long as I keep my mind and heart open, our path will lead us to a future that is right for us, to our own version of normal.

Written by, Jill Kakoske

Jill Kakoske is a 32 year old mother to her 4 year old daughter who is on the Autism Spectrum. She’s a middle school teacher with a passion for educating about Autism. Jill reads, spends time with family and writes about her experiences as a mother in her spare time.

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.

To learn more about joining Coop’s Troops click HERE!

Go give Jess and Val over at Autistic Interpretations a follow! You will find more beauty and love than you ever thought possible with their family.