I’m not wholly sure how to begin this one.
‘Oh for fuck’s sake’ seemed appropriate but, until now, this blogger hasn’t felt the need to swear.
For fuck’s sake.
Here we are, this family of mine, stitched and held together by a variety of care providers and services and, the one we need most, beloved respite, is proving beyond elusive.
We have been bruised, my husband and I, by having this most basic of requests wrapped up in long meetings and long delayed reassessments of our needs. These are happening currently. It includes: three one hour sessions with our social worker where she sits and talks to me/ Big/ my husband and I about our life. She has to dig it up, from the start, with questions which I no longer know how to answer (What was he like – developmentally – at one? I really don’t know. You try remembering to put a marker in your son’s glacially moving sands) to ones which I don’t want to answer (how did that affect your daughter?). Nothing is private. The more information we hand over, the bigger the case notes become but, really, after every meeting I am wrung out.
There are also three sessions between her assistant and Small where he can play with him, get to know him and see what he’s like – as a person. Whilst this is ostensibly for Small’s benefit this is really to feed back into the Big Report.
And the stark truth of our situation is this:
Our current respite Carer does not want a bed that would accommodate Small in her house as she feels it wouldn’t work for the older children she cares for. This is totally her prerogative and we respect that but, as a result, our county is respite-free.
You’d think, across the entire county, not to mention the two next door, that someone would be either able to accommodate him or could be trained in order to do so. Apparently not. And when one of those involved in your son’s care says: have you considered taking legal advise? You know you’re in trouble.
We didn’t think we were asking for much but apparently we were asking for the world. I don’t want to fight, I don’t have the energy to fight and, as one other blogger so eloquently put it – really, where did this fighting talk come from?* I just want someone to not only acknowledge the problem, but work with us to find a solution. I come back to the same argument each time. Surely helping us – and all the families like us – is cheaper than taking those children into care? Why is it that social care continues to fire fight with no time to plan? How have we got here?