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  • Kristy Forbes

Change is not loss

Updated: Feb 25


Change is not loss.

(For the family and friends who continue to support, love and understand the choices we make for our happiness).

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It was only two years ago that I sat, crying, over not being able to spend yet another holiday season with my family.

The truth is, I haven’t spent Christmas or Easter or any other holiday with my family in eight years.

The last Christmas with my family was when I was heavily pregnant with the first of my girls to be diagnosed autistic.

It hurt.

It felt deeply saddening for a very long time.

And whilst we attempted a few holiday seasons with my husband’s family, it too, felt so sad.

We would be so excited to see everybody, to share gifts and spend time with our nieces and nephews who we hadn’t seen sometimes all year.

But the reality was always very different.

We would spend the hours long trip in the car feeling highly anxious about how things would go, who would be there, how they would receive and understand our children and our parenting approaches, whether the noise would be too much, whether our girls would accidentally ingest any of the foods they’re intolerant to, whether there might be any altercations involving aggressive behaviour in our children as the result of their dysregulation, whether one of the girls would abscond, whether something would break, whether someone might find us rude, whether there might be a smearing incident..

I could go on.

And here’s the thing..

We have always come away so happy that we had the opportunity to spend a few hours at night with the family, sitting around laughing and talking.

Those are beautiful memories.

They are the times where it’s late, the children are all in bed and the adults sit and connect. I love that.

But the in between is incredibly challenging.

Family absolutely offer to help, but the reality is that often they just can't.

They also do a wonderful job at having us feel welcomed, loved and supported.

But the dysregulation brought about by our autistic brains is often created by environmental factors that are beyond the control of others, no matter how hard they try to prevent it.

We don’t get to sit and eat with our family for Christmas lunch. I have strong visual reminders of peering through the window seeing our family sitting around the table during lunch, laughing, eating, celebrating..

While we spend our time outside in the hot sun with our littlie who struggles with the sound and the escalation of excitement..and she isn’t alone.

My husband and I would tag team at supervision and engagement with the girls.

And after hours of chasing around the house non stop, the only rest available was to put little Miss in the car and go for a drive to allow her a nap and ourselves some refuge from the chaos of running around.

The last time this happened, I cried silently in the car.

I cried at the reality of our situation, that we were just running about a house full of people we weren’t able to engage with for more than a few words at a time.

My husband cried.

He cried over our perceived and obvious differences in the way we live our lives, at the barrier it appeared to have created from the people we love.

And it was then, that we realised that we had to make a change.

There will be times in our autistic lives that we are forced to make choices that we don’t want to make.

Choices that we believe will bring about pain, sadness, discomfort.

Choices that feel like a deep loss.

But here’s the truth..

They are NOT a loss. They don’t have to be sad or painful.

Nor do they necessarily have to be permanent.

They are changes, differences, adjustments, adaptations..

Change can be care, love, looking after our families, our children, ourselves.

Change can be removing the people, places and things from our lives that create the illusion, or sometimes the feeling of loss.

All those same people that we love and care for are still here.

Those same celebrations and holidays are still here.

But we do differently.

And we do differently so that we can experience happiness, joy, love and so that we can celebrate in ways that work for us.

We investigate, explore, create and design the new.

We do what works.

There will be people who don’t understand. There will be people who will make our choices personal. There will be people who will attempt to hold us hostage to their needs and wants with guilt.

This is but another person, place or thing to change, make different, adjust or adapt to.

We have choice.

I once believed I was held hostage to autism.

But autism has completely transformed our family life..

In all the very best ways.

It has dug up the old and the new and confronted us with all that we had avoided.

Autism tells the truth, it is brutally honest and authentic.

And it is a beautiful truth.

And it has set us free.

We spent our Christmas eating the foods we love, whether they fit into the Christmas food list or not, we listened to the music we love, we went off in different directions when we needed a break from each other, we wore noise cancelling headphones when we needed to, we got on with things whilst a meltdown occurred in the background-us, totally unphased because we know this is our normal and when we're given space, meltdown recovery is quick.

We accepted our differences and limitations and boundaries and preferences.

And we were happy. Emphatically happy.

My relationships with family have changed.

I value those who respect, understand and treat me well as a person, as a mother, as someone who is neurodivergent. And I am so grateful for those family members who support, understand, check in on us.

I am so deeply appreciative of those family members who accept our choices and who look forward to the time we do have with them.

And I release those people, places and things that create pain.

We find quieter times across the year to spend with the people we love.

We spend holidays together, in our own ways, perfectly unconventional. And it brings us immense happiness, joy, relief and freedom.

Autism will highlight difference, yes. It will highlight ugliness, and misunderstanding. But those things will not be found within autism itself.

They will be found where they always were hiding, no longer able to hold us hostage to the needs, wants and preferences of others who may be impatient and self centred.

Releasing those relationships, although they feel painful..

Brings relief and creates space and opportunity for the new. The beautiful. The kind and the loving.

Difference is not loss.

It is opportunity.

It is freedom.

Kristy Forbes Autism & Neurodiversity Support Specialist inTune Pathways

Image: Pink Sky Photography


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