Solution searching (and not finding one)

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?




An open letter…

To all of you who have input to our lives. Today though this is mainly for you in Social Services.

You cannot take away our respite.  We will fall apart.  You know this.

Small has, unsurprisingly in my opinion, been making physical developmental bounds.  Every single department: Physio, occupational therapy, visual impairment, nursery, now school… they have – you have – all been encouraging this.  He is not completely the sedentary chap he once was.  Give him something to pull up on – he will have a go.  This is good, everyone says, this is great progress they all cheer but, oops, we’ve just risk assessed his respite carers home and I’m sorry that’s suddenly a no go.  Have a good weekend!

Wait, sorry, what?

How could we have guessed his trajectory? you say.

No, no, this is not acceptable. Why don’t you plan for this? Why is there not a plan mapped out for your children? That way you can tweak it, but not crisis manage. How is this more efficient?

That meeting you had – why weren’t we told? why weren’t we invited? Why have we not sat down to find a solution?  Why did you just call the house, post-meeting, post-decision made and casually inform my husband?  Why did he have to press home to you, as firmly as he could, quite what this 30-minutes-in-the-making decision would do to our family?  Why did you make him have to find the right time to tell me?  To let me come home from work, put my children to bed and tell me, so that I dissolved in tears only in front of him? What good does that do to anyone?

In safe-guarding our son, deeming his bed no longer suitable for his needs – and staying the right side of health and safety in your tick box world – you do not safe guard our family.  You do not safe-guard our life.  What breaks me more, is that this should not be news to you, we have been here before.  Through increasing our respite provision last year, you saved out family from imploding.  I sometimes don’t think you saw how on the edge we were.  Respite gives us an even keel.  It gives us a valve to catch some normality. There are so many reasons that our respite is a necessity, not a luxury and I have posted on this before.  We spend time with Big, we spend time with our friends, our minds are able to stop worrying about Small and just relax… wander. 

Most of all: for that night that Small is away I sleep peacefully.  Without stress.  My nerves are not stretched that he may wake up, may shout, may need to be got up, tended to at 2 in the morning, that he may wake Big and ruin her day at school, that he may render me incapable to work through lack of sleep.   Continual ground down lack of sleep.  Often he doesn’t wake at all but every noise, every mumble in his sleep springs my mind awake. Stretches it to awake unrestfulness.  Knowing respite is coming, I can keep going.  Knowing I am trapped in this box, I’m not sure I can.

We have had to explain – yet again – that if you do not come to us with a solution you may have to have him. This is not a solution I even wish to countenance – and I think you rely on this – the idea of Small not being here, not being part of our life, ever-growing challenge that he is – is not an idea I can look at head on. It makes my heart contract. It makes my eyes water. For you know that we love him. But we need space to be kind to ourselves too. And this is something that every parent needs.

We are asking for some joined up, more holistic thinking. It cannot just be about the child. The child can be in the centre of the circle, but without attending to those who keep him there, he will fall away. Please don’t hide behind lists, phone calls unanswered. We have better things to do than have endless meetings with you too. We just want to function as a family. Help us to help you. Help us to help you keep him from being one more statistic in the wrong end of year column.

Think outside that box.

Tally up the cost of the bed he needs versus the cost of your having to take on his whole care package. Then come to us and help.

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