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.

Attempting to Access Adult Asperger Support Services Part 1

The Family Cracking-up-and-significant-breakdown Prevention Project (in family, I don't include my father - he's far too in his own head and own world to notice anything going on around him that could cause cracking up. That sounds like an insult; it's not, it's just how things are): so far, so good.

Whilst on an employability training scheme year, run by a special school, my sister spent a few nights at a residential independence skills training organisation, and that organisation will very happily take her again, on a regular basis. No prior assessments or referrals required. Hooray!

But this is only funded if she has a social worker. She last had a social worker under Children's Services. However, being a disabled and vulnerable child with a learning difficulty, requiring a social worker, seemingly does not mean one will become a disabled and vulnerable adult, with a learning difficulty, requiring a social worker. So she doesn't have one, and my next task is to get her one.

Once we've got her one, accessing this regular residential service should be easy, as the council's social services accept that independence training saves them a lot of money when the young person comes to move to a more independent place of living. A more independent person (as a result of independence training) requires less support, saving the council money.

So Part 2 will be obtaining a social work assessment. No idea how easy that will be or how long it will take.

Family wishes, difficulties and challenges

My mother has had an objectively more difficult life than anyone I've ever known. I wish she could accept that finding her difficult life difficult, or finding my very challenging sister* very challenging, does not make her a failure, and does not mean she has to tell the world she can't cope (she does cope, but sometimes she's pushed to the edge of coping-ability). I wish I had a way to make her know this.

This week I'm going to call up various agencies - I wish I could do more but even doing the small things is helpful, I hope. I'm calling because it's easier for me than for my mum to hear "No, we can't/won't help you / budget cuts / no space / we help people with learning disabilities, not "high-functioning" like Asperger's / we can't help people who are in employment"... those replies don't directly make my life more difficult, they're not as much a kick to the stomach when you're down as they could be for a primary cater facing challenging behaviour.

I so much hope I don't get those replies. Otherwise, well, it's convenient I'm living nearer family for my foundation programme years, because respite care (that I hope to help provide) is so essential. Especially when that care is mostly emotional.

*She has Asperger syndrome (an autistic spectrum disorder, at the high-funtioning end) amongst other diagnoses, so can have challenging behaviour.