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Pesky Ghosts

May 24, 2014

“Why are you frightened – can’t you see that It’s you.
That ain’t no ghost – it’s just a reflection of you”.

Just when I think I’ve buried the ghosts of 2010, something will pop along and I find a phantom in my head gets reactivated. It’s normally something quite trivial that sets the ghosts off. And then I find myself occupying a space (usually a head space) that is all too familiar from that horrible year.

It happened the other day. Steven goes swimming four times a week. On Tuesdays and Thursdays he goes to the David Lloyd Health Club and on Friday evening and Sunday morning he goes to the Mencap pool. They set off on Tuesday but when they got there, discovered that the pool was closed for three weeks for refurbishments. In a few weeks time, the Mencap Poll will be closing for a couple of months to have a new roof put on. Considering swimming is Steven’s favourite activity, this is going to leave a big hole. We can’t go back to Virgin Active after the run-in with the water aerobic ladies and Steven finds municipal baths a bit difficult – too many people and hard to get a routine going there. So, on Wednesday night I asked him if he fancied some other swimming venue for the times when the normal places are out of action:

“Get a man’s paddling pool for the back garden”, was his reply.

It’s a good idea. For the first time in 6 years we now have a back garden and it’s quite a large one too. BUt within seconds of Steven mentioning it, I found myself fearful. Fearful of how a paddling pool for a 24 year old would be viewed by social services. It ties in with the “potential” stuff I was writing about the other day. The social worker used to be quite critical of a lot of the things that Steven enjoys – Gladiators, Mr Bean, acting out scenes with his model figures – she felt they were too young and that he needed to be “showing a greater maturity”. (I never told her that I was playing with my Subuteo set well into my thirties). It didn’t last long but I had a fifteen minute session of nonsense inner arguments – “Don’t tell them about the paddling pool”. “But they’ll come round and see it in the garden and that’ll make it worse because they’ll know I’ve hidden the purchase”. “Fuck ’em – it’s Steven’s wish”. “Yes – but they might argue I’m not acting in Steven’s best interests by letting him spend his money on a paddling pool”. It went on and on.

Eventually, I spotted what I was doing to myself and locked that ghost away. I started to search for paddling pools and found a large one that ticked all the boxes. But as I was scrolling down the page, I noticed some hot tubs – some of them not much more expensive than the paddling pool. Steven loves a hot tub, so it would be an ideal buy. Then the second ghost appeared. In 2010, I couldn’t make any decision for Steven, small or large. Everything had to be run by the Unit for their approval or permission. I remember having to ask them if Steven could visit his mother on Mother’s Day on the way back from the Mencap Pool one Sunday. They refused because her home hadn’t been risk assessed. If I brought anything for Steven (new CD, DVD etc), I had to hand it into the office first for them to decide if he could have it. I found it impossible to retrain myself to do that and frequently came a cropper. I wasn’t being belligerent. After 19 years of making all the big (and small) decisions in Steven’s life, I couldn’t get my head round the idea of having to check if he deserved the new Pet Shop Boys CD.

So, back to the hot tub and I found myself asking all the support workers their opinions. I guess that is not a bad thing as it helps them feel involved but the truth is that I didn’t need to. I didn’t ask them because I wanted their opinion – I asked them because some 2010 reflex had been triggered off.

Thankfully, these fearful thoughts didn’t last long – about an hour. I suddenly realised what I was doing and gave myself a good slap round the face. I’m not blaming anyone from 2010 for the fact that I revisit the ghosts – they are my ghosts and I am still learning how to spot them and banish them.

I’m going to order the hot tub next week. I suspect the ghosts will last longer than the hot tub though.

From → Social Care

  1. abrownorg permalink

    You are amazing, Mark. I recognise those feelings and think you express them very well. Again.



    Andy Brown
    Sent from my iPad

  2. Jayne knight permalink

    Poor Chris of ChrisVoice needs that water stimulation. He has been promised a sensory garden. Up there is no intention if supplying it. Imagine a guy like Steven who gets I session a week swimming after a car journey he hates, no paddling pool even, his mum had to get on her knees nearly for one so small he could just put his foot in it. He amuses himself with a hose in a grid. Please lend your voice Mark to Lynne, chris mums campaign to get him out. He is 21 and starved of any stimulation. The people responsible sit there like they don’t understand why that is a problem, I think all your ghosts are going to take forever to go. Lynne says she feels like the ” ghost family” and Chris the ghost person because of their publicity ban.

  3. Weary Mother permalink

    Learned helplessness – we all know the reality.

    The feelings of having to double think everything – and how much worse for people in care or living alone out there being ‘cared’ for. All those different expectations, and all those risks if ‘we’ the cared for and without any power at all, say no or yes at the wrong time. Carer A says I can and should – carer B does not listen and gets angry and does not like me. C is a really nice guy, he likes me, but he will go away. If I speak up mum/dad etc will get worried and make a fuss, and we know what happened last time – lots of meetings with angry scary people. Keep quiet, don’t ever get angry and learn.

    When my son and I went to the ‘independent complaints panel’, held in an ancient building and huge terrifying room all dark wood panels and portraits, I felt we had to climb into chairs at the huge table; ‘Alice in Wonderland’ like shrunk to specks. A magnified scary lady chairman and her ‘independent’ generals on far far side. (I had refused first lot of ‘independents’ for they were not in the least independent, by my measure). ‘Off with her head’ . Whole thing was hideously medieval. The panel had a lovely lunch laid (napkins and table cloth) outside the room, we were not even offered a cup of coffee or water in an ordeal that lasted over 3 hours. As we sat under the stairs waiting it seemed for ages to go into meeting, the panel ignored and swished past us, escorted by a very humble administrator.

    There were portraits of ancient council worthies all the way up the stairs, (long vertical stairs that I had earlier pushed and dragged my disabled son up ) and while we waited my son stared at portraits for a long time, and then said, ”watch the eyes mum – like Harry Potter”. On the way home I asked him what he thought about the morning, He said ‘like tele – we got fired’.

    Spot on, my love, we learned.

  4. Sally permalink

    I do know what you mean Mark.When my son wants anything which is much younger than his years, say, yet another large fluffy teddy bear, I am torn apart!
    There’s my worries about him wanting such things : can I help him get interested in things more suited to his age so that he is more in tune with the world? So that he can talk to people his age and not get funny looks or ,worse, be laughed at? He is crushed when he becomes aware that what he loves is not what chaps his age “should” want. Can this be modified? Should I just get the bear because it makes him happy, and you can’t really modify a bear? etc etc.
    Then there’s the fear you mentioned. How will this be viewed by disabled services? By any clinician enlisted to help? By other parents? By the World? Will I yet again be viewed as a parent getting things wrong? Will someone down the line be telling me I don’t need, say, fiancial help for something useful because I am blowing the money on bears? That I am infantalising my son for some mad reason of my own by buying such toys?
    Years and years of questioning and criticism about every aspect of parenting of a person with a disability makes one terribly anxious.I have no total assurance that I am doing the right thing, but I have learned its dangerous to share that anxiety with anybody in power.
    A hot tub sounds like a great idea.

  5. He should love the hot tub! I still like bears….at 56….and don’t imagine I will ever “grow out of it” Sally! 🙂

  6. Shirley Buckley permalink

    Mark the latest from the LA “I am writing to inform you that Riverdale Care Home have submitted a standard authorization request to Surrey CC the supervisory body) as they consider actions taken to ensure Martin receives appropriate care and support at Riverdale amount to a deprivation of his liberty” Martin has been at Riverdale under aCourt Order for 6 years and they have used restraining holds at least twice. This is where I collapsed into jibbering wreck God help Martin.

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