We were always taught, or so I remember, that if we had something we needed help with we just needed to find the right person and they would fix our problem, answer our question… and I think it’s this, more than anything else, that leaves me feeling so: frustrated/ helpless/ powerless over our continued lack of respite.
It’s been five months now. Not that I’m counting.
Not I hasten to add that I’ve been idle. I’ve complained to anyone who will listen but… so many brick walls.
This is where social services got to: a great big document got produced which sets out extremely clearly why we need respite,that it’s quite urgent and really needs putting in place. Now. Everyone agrees it’s a necessity. Everyone agrees this is the safety valve our family needs.
No-one is able to provide it in a way that is satisfactory to all sides.
We’ve been very clear all along what our respite requirement is… For one night a fortnight we’d like Alex to go to someone else’s house to stay and to sleep. This provides us with a real and proper break on so many levels that I know I’ve written about before. It’s that chance to breathe out, to have 48 hours of not quite so intensive care commitments… to eat a meal without feeding someone else too… to listen properly to Emma. To sleep easily.
No-one in our county – or the two adjoining counties – seems able to provide this to us. Varying reasons are given – the biggest sticking point? You guessed it: the bed. Ironically (am I using that word correctly?) if we wanted more respite i.e. 3 nights a week, it would be less of a problem… but this is a big bed, and for one night a fortnight no-one wants it sat in their house. So we are trying to find more portable options. Beds that pop up, beds that fold down, fold away when not used…
The alternatives to what we would like (‘Here’s what we’d like you to focus on’) are: someone comes to our house to look after Alex whilst we are here or even they pay for us to go away whilst someone looks after Alex. I really really don’t want to sound ungrateful, but these aren’t options we can accept. This doesn’t work. Not for our house. Not for us as a family.
Practically it doesn’t work – making this a hollow promise – because we don’t have the bed, the hoists, the stairlifts they say we need for any trained carer to enter our home. The bed is coming, the rest? They came before Christmas with measuring tape but we’ve seen no-one since.
Holistically it doesn’t work either… because having another new person in my house is not respite. We’ll be listening out the whole time to see what they’re doing or if Alex is distressed. This is not relaxing.
It doesn’t work because what’s in this for Alex? Same house, just different person. He’s being ‘managed’. Our little boy loves people, he loves getting out. If we could he’d be having play dates and going to visit his grandparents – start gaining some independence. But he can’t – even though I know people would have him if they could. So he needs surrogate family – someone else with the equipment to take him on, love him, nurture him, show him a different side to the world. No-one should stay in their own home all the time, everyone likes to get out to explore. Alex is no different.
So we are at stalemate. We started a formal complaints procedure before Christmas. After two chaser calls to the man in charge of my case and no information forthcoming he told me this: This may take a while Mrs X but we do have Ofsted at the moment…
In something of a Monty Python-esque fashion I’ve actually complained about our complaint (I know…). In tandem with this I’ve petitioned both our county councillor and our MP. That felt a little feudal to be honest – going cap in hand to a man I know they’d listen to when they won’t listen to me. My MP is a lovely man and I know he’s already written to them on our behalf but when I told him our predicament he said he wasn’t really surprised as they’d failed Ofsted 3 times now and were in special measures.
What hope do I have?
Finally, I have to mention advocacy services. I’ve tried to find one to help me through this. They have all turned me down on the grounds of: he’s too young/ he’s not in care/ we don’t cover your area. This included the advocacy service that our council recommends. One woman said they couldn’t help as he’d never run away from home. At this point – I’m 7 refusals in at this point you understand – I laughed and said that was hardly fair as Alex couldn’t actually run. Physically did not know how to. We moved on… Pretended I’d never said it.
I’m used to all things Alex being slow. But this is beyond slow. Beyond the machinations of government being shwonky. This feels like: ‘We don’t know. And if we keep telling you that long enough, perhaps you’ll stop asking’. Once, when our Social Worker came to tell me – yet again – that they had no solution, he said (and I paraphrase here, but the gist is correct) ‘It’s almost a pity you had respite isn’t it? because now you know what you’re missing’. I can’t have him in my house any more. The last time he left I cried down the phone to my husband who was 40 miles away and just starting a new job. I can’t keep having that wall knocked down. So I’ve stopped communicating with them because I am tired. So emotionally tired.
I don’t know who else to ask. And – whilst risking sounding like a small child throwing her toys down in disgust – that doesn’t seem fair. Life’s not fair. I know that. I tell my children that. But this feels like being pushed to the brink. To unjust.