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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All change… again…

I don’t know if I have always hated change. I like to think that in my younger, more carefree days, I was open to doing things on a whim, dropping everything at the sound of something fun, looking forward to something different…. I’m not sure though.

I do know that having had Big, and certainly since having Small, OH and I have revelled, thrived on routine. We like to know what’s happening, and on what day, well in advance of its advent. Woe betide any – any – new thing that rears its head.

And yet change is coming. I see it coming, I have time to plan for it, yet I cannot look it in the eye.


I love our current set up. Every other Sunday Small goes off – bag packed, buggy folded – to stay overnight with his carer. Here is what I like about her:
– She is lovely
– Her family is lovely and they are clearly very fond of Small. Her two boys are older and Small adores them.
– They do such nice things together. They go swimming, or to feed the ducks, see the animals in the nature park. Sometimes, they visit her mum, who is local, and she has a dog. Small loves dogs. He thinks they’re hilarious.
– We know her.

But Small, pulling to sitting though he is, still has to be carried about from place to place, and weighing in at 17kg of boy, he’s not exactly light. As his parents, we are happy to carry him, happy to risk our backs, our knees, our ankles as we are just not ready to allow hoists into our house. We hope (and hope is something we haven’t allowed ourselves to do for a long long time) that in a year or so he will weight bear enough to transfer himself from bed to chair to car. But we cannot ask someone else to do this, to risk their health for our boy, and Pam has always been clear that she doesn’t want equipment in her house.

So back to Social Services we go. They have found someone who they think will be able to look after Small, although she is half an hour away. Half an hour – down country roads. She will have the right equipment in her house, her car can accommodate Small’s new buggy. I am meeting her this week. And good God the mess of emotions. Will I like her? Will she be right for Small? What will they do together? Will she love him, take good care of him, comfort him when he cries? Will he be ok sleeping here, in this house, without anyone he knows? Am I allowed to say no, this person is not right?

This ought to be a positive. We are hopefully finding someone with whom we can build a relationship for a long time. Someone who will be able to provide our much-needed respite for years to come, without the need for change again. But we fear change, especially in relation to our children, and this is the biggest change we have had to face so far.