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© 2023 by inTune Pathways 

ABN 78 435 698 441

It begins with us

October 17, 2019

 

**Some of the language used in this piece is solely to reflect the position of our family's beliefs and understandings around autism before now**

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It was 2013 and baby number four was coming along soon.

I told myself as I periodically did, that I had to get things in order, and by ‘things’, I meant my youngest.

She was engaged in a therapy that she was absolutely resistant to.

“Oh yes, but she only does what she wants to do” we were told “and we can eradicate that behaviour”.

Her father and I figured perhaps it was us. We were the problem.

Inconsistency.

We weren’t following on from her therapy at home all day long.

My heart sank at the thought. She was, after all, a child. My baby.

“It’s time to get my act together”, something I told myself relentlessly.

We wanted her to be able to sit at the table for family dinners and other meals and enjoy being a part of our family.

But she preferred to dine in front of the tv or in another lounge room.

We knew the stuff. We knew about sensory sensitivity, etc but our therapists still said we could get her to do the things that others do, in order to live in the real world.

We began drawing up charts and documenting what I was cooking and serving to her. It had to have been the meals.

What was happening at the time when we were eating?

She was non speaking and unable to verbally express her thoughts or feelings.

We tried all the things.

Rewards, special chairs, sitting quietly, changing the position of the table.

We tried all the things.

And she wouldn’t budge.

Meltdowns. Every night. Screaming.

Until she got to eat where she wanted to eat and what she wanted to eat.

This was our family life in so many areas..

We felt we were failing.

We worried for her future.

We were isolated.

My hands and voice shook with anxiety.

My other children were miserable.

Their parents were emotionally absent and physically exhausted.

And yet none of it had anything to do with our beautiful girl..

And everything to do with the constant bombardment of well intentioned advice, suggestions, recommendations, diets, therapies, books, fads, thoughts, fear, projections, insecurities.

After some time, and a bout of chronic illness that saw me unable to leave my bed for many days, I started to think and to see things very differently.

I began to pay attention.

To her.

I switched off the well intentioned everything that had become white noise that disconnected me from myself, my children, and life.

I woke up and realised I had to put in some serious self care in order to continue on.

I stopped denying and dismissing my own autism diagnosis and to start considering how this was influencing my parenting and my attitude toward autism to begin with.

I just stopped.

I decided to begin to live as though we had no information to go by and I had to work it out myself and things changed.

The energy in our home changed.

I began to make amends to myself.

I started playing soft music in the mornings while we were getting ready for the day.

I began reconnecting with my friends, in ways that I felt comfortable.

I thought long and hard about our family philosophy, and not the goals often set for autistic children by therapy.

We took a break. A family break from ‘intervention’.

Over time, we began to laugh and play, and to regulate.

We cried, we communicated, we set goals based on our dreams and we moved forward.

But we had to hit rock bottom first.

We never returned to ‘early intervention’ but sought our supports that our children and ourselves benefit from..

Occupational therapy, speech therapy to learn how to use a communication device, psychologists who practise from the space of autism acceptance and demonstrate a respect for autistic identity and culture.

We gave ourselves permission to say No, to cancel, to not attend, to rest, to do differently.

To stop comparing.

And then, one day when we weren’t working on it, weren’t pushing for it, weren’t fixating on it, I noticed something beautiful.

I looked across the table at my Mother and Father in law, at the end of the table I saw my husband, at the other end my second eldest, at the bench my eldest with our now youngest (both extremely non conformist) and right next to me, my beautiful now eight year old girl who once fought through desperation to beg us to heal ourselves so she could join us at the table.

There she sat, next to me, happily eating away.

“Icecream” she said, as I passed her the bowl of dessert..

“Thank you” she said.
It begins with us.

It really begins with us.

Everything we panicked we’d have to give up..

We never could have imagined the life we have now.

The happiest, most content, most authentic versions of ourselves.

Unapologetically.

And, our autistic children led the way.

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