A Glimpse into our autism: Leaving

11 October 2017

Dear Friend,

Yesterday I left for camp.

I can count on one hand the number of times I have left my big lad over night.

When you have a very anxious child who also has autism it is really difficult to leave them. To begin with you have to hand over responsibility to someone that they trust.

It also has to be someone who understands them, knows their needs and can handle their behaviour.

This is really limiting....

We rely on our in-laws for all our child care.

In the last 11 years, there have been no weekends in Portugal with my friends, or romantic city breaks with my hubby.

Don't get me wrong I've never felt a real need for them either because I know that I wouldn't enjoy sitting in the sun sipping my cocktail if I thought my son was overwhelmed with anxiety at home.

But then came camp...

I don’t know if work asked or just expected me to go but I didn't want to make a fuss...

Camp was organised like a military expedition. Big lad would be with Papa but (as he also needed to work) Oma (grandma) would stay at our house and help too. I also contacted my son's school to warn them of the changes at home.

I was nervous but off I went.

We sent messages, pictures and FaceTimed (hurray for iPhones). He was fine. He barely seemed to miss me. I did get a big cuddle when I came home...

Was it a success?

We have come a long way during those last 11 years and whilst he won't scream and cry (as he did when he was younger) there is still anxiety in change.

Since returning I have been shocked by my big lad’s low self esteem, the return of his stimming and poor sleep patterns.

School said that it was good I had informed them. They had noticed a difference in his behaviour and he was very restless.

It only takes one small thing to disrupt the delicate balance that keeps our big lad settled.

It appears that, I am his anchor.

Butterfly with coloured jigsaw pieces pattern with textI would do anything to protect him from feeling stress. It is heartbreaking to see his crumpled face and know that he is struggling but...

...life isn't predictable. 
I think that it is also my duty to prepare him for changes, get him ready for real life?

Finding an equilibrium is hard!

Yesterday I left him...

A glimpse into autism is a series of short letters that explore the impact autism has on our family on a day to day basis. Disclaimer:  this is our experience not all autistic people are the same but many carers are faced with this dilemma. 

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