When Parent Turns Into Caregiver

Being a parent is something I always dreamed of.

Being a parent meant raising my kids to be great people, to teach them values like kindness and honesty, and hopefully send them into the world as adults who could make a life for themselves.

When I was pregnant I imagined their milestones in front of us.

Finishing primary and secondary school, hopefully onto college and graduation and lastly a career that they loved and that both challenged and fulfilled them.

In the same breath I imagined myself and Brian as a couple again, but this time with the freedom that comes back around when your kids fly the nest.

Weekends away, Sunday morning lie ins, holidays booked at a whim…this was all waiting for us after our kids grew up.

We talked about driving an RV around America in our 50’s and 60’s and settling down to grandparent roles if we were lucky.

We had plans.

Life had other ones in mind.

I often worried about how I’d manage returning to my job when I was pregnant. How we would deal with childcare and school runs.

It turns out I needn’t have bothered worrying about that.

The job life had lined up for me wasn’t in a Bank…or anywhere else. It was at home.

I am a carer to two beautiful children.

Being a special needs parent is a full time job by itself.

Since taking on this role I’ve diversified my skills.

I’m what you’d call a “jack of all trades”… and master of none!

I’ve become a teacher, still attempting to teach my children things that kids half their age have already mastered.

I’ve become a speech therapist, doing every approach I’ve read or learned, to try and prise those words I know they have locked in their little brains somewhere.

I’ve become a doctor, frantically trying to diagnose what’s wrong with them when they can’t tell me.

I’ve become a clown, doing anything and everything I can to make them laugh on days when Autism tries to steal their smiles from me.

I’ve become a perfectionist, cutting the toast that precise same way each time so they’ll eat it.

Making sure I’ve 10 of the same cup because that’s all they’ll use and a cupboard full of that one brand of biscuits they will accept.

I’ve become a full blown lobbyist, pleading with anyone who’ll listen for services my children desperately need.

Being a parent and a carer all in one means I am the voice for my kids.

I’m in charge of their every need. And responsible for everything in their daily life.

I feel like a soldier, in combat every day.

Fighting with the education and health system for services.

Fighting with Autism and the things it does to my kids, to my son, and the violence and aggression it instills in him.

Fighting with the world for awareness and acceptance of them.

Fighting with family members for some understanding and support.

Fighting with my husband out of frustration and sheer exhaustion.

Fighting with myself and my guilt and self doubt.

Battling with the fear that this role overwhelms me so much.

Am I doing it right and am I doing enough?

And many days I become a shell, somedays all I do is sob and survive.

But somehow I do it. I wonder every night how I will keep going but the truth is there is no other way.

We all do what we have to do.

Some little person needs us to be strong so we are.

We cry if we have to.

We scream if we have to.

But we carry on…they’ll get there because of us.

Written by, Elaine of LifeUpsidedown

Welcome to Life Upside Down. I’m Elaine, Mom to Kirsty who has autism, Logan who also has autismand an Intellectual disability, and Milo, our My Canine Companion service dog. This is our day to day life, spreading truth and awareness around Autism. You can follow us on Facebook and Instagram.

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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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