Sunday, 8 July 2012

Carer's holiday, and a holiday for the carers

As I discussed extensively with Steph at Steph's two girls, I have a sister with Asperger syndrome (an autistic spectrum disorder). This week we went on holiday together. It was the first time she'd been away without our parents, so while it was a welcome break for them, it was a bit of an adventure for her.

My mother was convinced we would come back not speaking to each other, but we were even still laughing with each other.

However, I've come back with a newfound respect for people who can organise and take responsibility for a holiday and for other people's needs, when the other people can't communicate those needs. Taking care of meeting someone's needs without knowing what the exact needs are at that time and place is a skill I haven't yet perfected.

I've also come back with a newfound understanding of the little difficulties in coping that, when added together, make an independent life currently impossible. And a wonder about how outsiders, such as the lovely people at ATOS who will assess her disability living allowance, can possibly notice or understand such minutiae, and comprehend how someone who at first seems competent if a bit odd, actually requires extensive support.

But we survived, and had a lovely (if exhausting) time. Would we do it again? Yes, but preferably with better communication on what each person's preferances, needs, and limitations are, with updates when they change. That would be the life...

And also ideally with a sense that all the independence training that the holiday involved was in some way wanted or appreciated. It's difficult to have no idea but feel the need to pursue the ideas of independence and gaining skills anyway.

But yes, we would do it again.

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