Apologies for absence over the last few weeks, but I have had a head full of quandary... for anyone who knows their Joni Mitchell, no, I didn't suffer the mighty, mighty thirst, if you are not familiar with the works of Joni Mitchell I urge you to listen to 'Don't Interrupt the Sorrow' from her sublime album 'The Hissing of Summer Lawns', it has absolutely nothing to do with what I'm about to ramble on about but has given me a lot of listening pleasure down the years. Digression over and done with... on with the motley..
Back to the head full of quandary. I've been banging on about the lack of psychology input for autistic people, and by default, their carers for some time now. It's all very well for your care manager/social worker to load you with praise for how well you are getting on/coping and making sure you have a review meeting every six months or so to make sure everything is still on track, but what you really need is someone who knows what they are talking about to tell you where you may be going wrong and suggest strategies to help when things are not going to well.
Every carer knows you can't get it right all of the time, we have learned that you cannot do the impossible, we also know that neither intoning prayers nor snapping your fingers will result in a miracle. We also know that when there is a recurring problem a fresh and eye can often see what is causing that problem a lot faster and clearer than those caught up in the maelstrom of an autistic meltdown. And do you know what? I don't care how good your care manager/social worker is, he/she has got a workload so big and diverse that good specialized advice from them is next to impossible. Unfortunately, from my experience it seems that referrals to specialists in autism, made through your GP or social services fall on barren ground and we certainly don't have sufficient funds to venture outside of the NHS, and to be honest, my principles and politics wont allow it anyway. So when a psychiatrist and a psychologist turn up within month of each other I can't help feeling that my years of making a nuisance of myself have paid off.
Psychiatrist was great, and confirmed for us what we already thought was the case but needed to have confirmed, that Sarah does not have any mental health issues and management of the more damaging aspects of her autism with the help of psychology was the best way forward. Just like everyone else that has dealings with Sarah for a short while, he was fascinated by her and is keeping her on his 'books' and overseeing her case. The psychologist has turned out to be a real gem as well, although the amount of homework she has had me doing was unbelievable! And that is exactly where the greatest help has come from. She had me going back through these blogs and through the communication book we have running with the day centre pinpointing times, dates, days, events and so on and describing the nature of the behaviours which have been causing concern. I wrote it all down along with corresponding dates for things like respite stays, menstruation, etc. That bit of hard work is over thank goodness, I don't think I've done so much research and written that much since I had to submit my dissertation! Now I only have to keep up with daily entries as a kind of diary which only takes a couple of minutes a day so long as Sarah is ok.
What we've discovered from all this is that there are blatantly obvious triggers for meltdowns and violent behaviour so those triggers need to be addressed and eliminated where possible and if elimination is not possible, we need to construct strategies to help Sarah cope. We sort of knew that, but when you live with it day in day out for as long as we have you get kind of long sighted, you know what I mean, when you find you need reading glasses to make sense out of the blur which ten years ago you could see quite clearly, which is where the fresh pair of eyes I mentioned earlier come in and produce results. Which brings me back to the quandary I mentioned earlier too, for we were most certainly in a quandary which was in danger of becoming a quagmire, but as I was going through the process of gathering information and dates I started to see where we were going wrong with our approach to dealing with some of Sarah's more challenging behaviour. We had become as rigid and unbending in our responses to Sarah as Sarah's behaviour is when things are not to her liking. Simple really, but we couldn't see it until the psychologist got us looking at the 'problem' from a distance. We've still got a lot of work to do, we always will have, but there are a lot less doubts hanging in the air over achieving positive outcomes when we are faced with a bit of challenging behaviour now.
The only thing that still makes me mad is the fact that we had to wait for years for this kind of professional input. How many more carers are out there who have just given up trying to get this sort of help and advice after years of waiting? Now I'm in danger of getting political and that will bring on the mighty, mighty thirst I denied earlier, so I will shut up and leave you alone, I've not only neglected this blog, but twitter as well, better go and say hello, they are not so forgiving over there......
