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Grief and loss

October 17, 2019


I have experienced grief and loss as the parent of autistic children.

Not because my children are autistic, but because I couldn’t be everything to everyone all of the time.

I had carved out what parenthood and family life would look like and my ideas around this were rigid to say the least.

Let’s face it, the media doesn’t help.

We’re rolling along and times are a changing but the idea of what family should look like was pretty impressed into my brain.

All I ever wanted, for the entirety of my life was to be a Mother.

But after some years, I found myself in a position of not being able to provide my girls the life they need on my own.

On weekends, the best we can manage at times is a drive to different places, a walk in the bush, lots of creative activities at home and some sunshine in the backyard.

Don’t get me wrong, this is a wonderful life. But they need more.

They need more stimulation, more engagement and connection with their peers.

They need their own lives.

They need to grow, to establish relationships with others and to experience the world in many different ways that helps them to thrive and to explore what brings them joy.

My four autistic girls are all so different.

We have a mix of support needs in our family and letters to accompany our autism, such as ADHD and PDA.

Some of us, at this time, require 247 significant care, and some of us, at this time, are more independent.

I can pinpoint that moment in my mind, I can see it.

The moment where I knew I was pushing out the days where I was able to do this on my own.

One of us was getting stronger and faster, and I’d be harmed if I got in the way of a meltdown.

Being autistic also impacted my willingness and ability to seek help or to look outside of myself for solutions at that time where my children were concerned.

When your child is non speaking, extra consideration and care goes into their wellbeing where strangers and other human beings are concerned.

Better to be safe than sorry.

When your child cannot, at this time, express when they are not okay in details, the luxury of risk is made redundant.

It took me a very long time to consider having support come into our lives.

I was outraged and insulted when a professional suggested it.

I wouldn’t take the brochure. I wouldn’t discuss it.

I watched my Mother raise children and her Mother raise her and her six siblings and I was not going to be any different.

I was not in a place of acceptance, at that time.

When things began to become more difficult, I realised that in order to keep my girls safe and to respond to their need for wellbeing in all the ways they required, I would need support.

So I interviewed.

Nobody felt right.

I hired.

I cancelled.

I organised dates and times for them to come into our home and meet our children.

I cancelled.

I lost potential support because of my apprehension and terror.

I battled on, and the children missed out because of my reluctance to let go, born from the fear that I’d fail them if anything awful happened.

It was a process.

Somebody finally came to our home three years later and they felt right.

Gentle, peaceful, quiet, kind, patient, attentive, calm.

Smiling, looking on, celebrating the small things and the big things for my girls.

I really believed that having support would be the beginning of a great disconnection, of letting go of being the parent I always wanted to be.

And it has been the opposite.

It has allowed me to be the very parent I want to be.

It has allowed me to address illness I’ve been living with behind the scenes.

I have been able to let go, yes.

Of worry, fear, apprehension, concern, lack of time and sleep, lack of trust.

Having support in our lives has meant the beginning of a new phase.

Where we can do things we couldn’t before.

Where the girls can experience new things with new people.

Where I can take the time I need for downtime or things that bring me joy.

Where I can be reminded that in this world, where it often seems so little understanding and acceptance exists,

There are wonderful people. Kind, decent, incredible human beings who care deeply for others.

I now have a cleaner, a person to mow my lawns, an assistant for my business, a book keeper and an accountant and a support person for our family.

I am so grateful. We are so blessed.

Letting go really does mean creating space to invite in the new.

The new and wonderful opportunities that some of us never imagined our families might have.

There is never any shame or failure in asking for help.

In fact, it is the complete opposite.

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