A few weeks ago my partner walked out. That’s right; he said he could not handle life in this weird, wonderful world of Autism so he left. Choosing to go and live a life with no ritualistic behaviours, no appointments with the clinical psychologist, no having to stay in when he would rather be out, no disturbed hang over’s and basically being able to create his own life choices, from that moment on.
I did what most women would do in those circumstances, I collapsed in a heap on the floor and cried and cried and then cried some more. Nothing unusual about that, I hear you say, and I suppose you are right. There is nothing at all unusual about that.
Life consistently throws events at us that we do not expect, people get ill, people split up and people die. Of course there is never a great time for this to happen.
When life throws events at a carer though, things are very different. The only thing I can compare it too, is the feeling when you have very young children and become ill. You long to stay in bed and be ill in peace but that is impossible due to needing to safeguard and feed your child, well that’s what it’s like for carers too. Always needing to be there, sorting out medication, appointments, money, food, social life etc there is no time off for good behaviour or illness.
That is until Individualised budgets came along. When crisis has hit us before, like the time I needed 5 months of chemotherapy or the time our house burnt down (never good time for that to happen!) we relied heavily on the mercy of social services and what they could offer to help out with the care of Adam.
This time it was different.
My son was already away at his adult placement, a scheme where carers look after him in their own home. A telephone call was made to the family who happened to be hosting Adam’s best friend the week, they were more than happy for him to stay where he was for the rest of the week. So instead of arriving home to see his mother in a catatonic state of grief, or being shunted off to an emergency bed somewhere unknown, or having late night conversations with the emergency duty social worker; we experienced a natural run of support that was seamless, effortless and brought entire peace of mind to both of us. Not to mention a week away with his best pal.
Because the carers know Adam very well and understand the anxiety associated with Autism, they were able to discuss the events with him. This meant that when he returned home, he knew exactly what to expect and had already accepted that from now on, it was just going to be the two of us.
A telephone call was then made by a friend on my behalf to alter the hours of Adam’s personal assistant. So he had a couple of days off and then re paid us by collecting my son a week later and running me to the supermarket. He then picked up prescriptions and arranged a night out for them so there was something pleasant to look forward to for the week ahead.
I doubt that the old system would have provided the appropriate response and I also feel sure that if we had chosen that route, the cost to the tax payer would have been higher than the cost of two telephone calls and three extra nights at his adult placement scheme. (We will be paying for the three nights from Adam’s individualised budget.)
As much as I cannot minimise the grief, shock and almost irresistible urge to chop sleeves from my ex’s suits, I have to acknowledge how different and how much more distressing this event would have been if we had been reliant on old system to support us through it.