As I write this it is Wednesday evening and I am feeling really tired tonight. More so than usual! When I think back over the last few days I think I can understand why. It’s been full on as ever at home -more of that in a moment – but also there has been a lot of stress about this week.
Like most parents of children with disabilities we are constantly fighting battles on a number of fronts. Every year our support services are reviewed and have to be scrutinised. Getting resources like respite or direct payments to pay for it, is extremely difficult in the first place. Maintaining them is not easy either. Getting an increase while not impossible takes it up to another level of challenge. As Andy gets bigger and I get older the physical challenge of his care requires energy and stamina that I often struggle to find. One night off a week where we can catch up on sleep and have a break is probably the very minimum we could do with to get by. We don’t get that. In fact we don’t get anything approaching that from our local authority. Under the current financial constraints we might have more than many. It is not however enough and consequently we will not be able to do things as well and for as long as we might. (surely that is not “best value” for any one?) This week we have been starting to talk about next years service with the relevant folk. It involves projecting ahead and talking about the future, both short and long term and the uncertainty that there is over services. This uncertainty is exacerbated by an austerity agenda imposed on the wrong people by out of touch political parties. Advocating and fighting for the rights of those with a disability expends energy carers can little afford. It can leave you quite flat.
Oh yes, I was going to tell you a wee bit about our busy day……..
We had a relatively comfortable 7am start this morning although it had been a late night previous. We were awoken by Andy thumping a metal soup ladle on his mattress and laughing. I savoured a wee moment listening to his happiness from the warmth of my bed before facing the day. An hour or so later I was clearing up the remnants of Andy’s breakfast from the bedroom floor while Helen was asking me to make some inappropriate alterations to Barbie’s clothes with the kitchen scissors! At least it is not always predictable! 😃