Forever

It was 8 years ago yesterday that Steven was taken from his home. This time of year always triggers the most distressing anxiety. This is how we spent two hours this afternoon. I was expected to repeat back every sentence by way of reassurance. It was accompanied by sobbing, punching his own head and ripping his shirt.

“Watch red Mr Bean video in the Cowley house forever. Watch the blue Mr Bean video in the Cowley house forever. Watch the green Mr Bean video in the Cowley house forever. Watch the purple Mr Bean video in the Cowley house forever. Watch the yellow Mr Bean video in the Cowley house forever. Watch the black Mr Bean video in the Cowley house forever. Watch the pink Mr Bean video in the Cowley house forever. Watch Mr Bean in America video in the Cowley house forever. Watch the Mr Bean’s Holiday DVD in the Cowley house forever. Watch the Mr Bean’s best bits video in the Cowley house forever. Watch the red Fawlty Towers video in the Cowley house forever. Watch the brown Fawlty Towers video in the Cowley house forever. Watch the green Fawlty Towers video in the Cowley house forever. Watch the blue Fawlty Towers video in the Cowley house forever. Watch Mrs Doubtfire DVD in the Cowley house forever. Watch Grease DVD in the Cowley house forever. Watch Cry Baby DVD in the Cowley house forever. Watch the Full Monty DVD in the Cowley house forever. Watch Muriel’s Wedding DVD in the Cowley house forever. Watch Priscilla DVD in the Cowley house forever. Watch Toy Story 1 DVD in the Cowley house forever. Watch Toy Story 2 DVD in the Cowley house forever. Watch Toy Story 3 DVD in the Cowley house forever. Watch The Erasure DVD in the Cowley house forever. Watch The Proclaimers video in the Cowley house forever. Watch The Pet Shop Boys DVD in the Cowley house forever. Watch the Abba Gold DVD in the Cowley house. Watch the Abba DVD with Pete Waterman in the Cowley house forever. Watch the Abba video with Neil Pearson in the Cowley house forever. Watch Mama Mia DVD in the Cowley house forever. Watch the Abba puppets DVD in the Cowley house forever. Watch the blue Beautiful South video in the Cowley house forever. Watch the Beautiful South video with Love Wars in the Cowley house forever. Watch the green Beautiful South DVD in the Cowley house forever. Watch the brown Beautiful South DVD in the Cowley house forever. Watch the Enrique on his motorbike DVD in the Cowley house forever. Watch the Tears For Fears DVD in the Cowley house forever. Watch the Spandau Ballet DVD in the Cowley house forever. Watch the Cher DVD in the Cowley house forever. Watch the Darts DVD in the Cowley house forever. Watch the Mika DVD in the Cowley house forever. Watch the Keane DVD in the Cowley house forever. Watch the Spice Girls DVD in the Cowley house forever. Watch the Shania Twain DVD in the Cowley house forever. Watch the Soft Cell DVD in the Cowley house forever. Watch The Sweet three DVDS in the Cowley house forever. Watch the Elvis Costello DVD in the Cowley house forever. Watch The Jam DVD in the Cowley house forever. Watch The Style Council DVD in the Cowley house forever. Watch The Christians video in the Cowley house forever. Watch the Busted DVD in the Cowley house forever. Watch the Travis DVD in the Cowley house forever. Watch the Anastasia DVD in the Cowley house forever. Watch the Lightning Seeds’ video in the Cowley house forever. Watch the Elton John at his show DVD in the Cowley house forever. Watch the Adam Ant DVD in the Cowley house forever. Watch the white Kate Bush video in the Cowley house forever. Watch the Will Young DVD in the Cowley house forever. Watch the Duran Duran DVD in the Cowley house forever. Watch the David Bowie DVD in the Cowley house forever. Watch the Kirsty McColl DVD in the Cowley house forever. Watch the white Live Aid DVD in the Cowley house forever. Watch the blue Live Aid DVD in the Cowley house forever. Watch the Boney M DVD in the Cowley house forever. Watch the Bryan Adams show DVD in the Cowley house forever. Watch the Fatboy Slim DVD in the Cowley house forever. Watch the little Housemartins DVD in the Cowley house forever. Watch the little Pet Shop Boys DVD in the Cowley house forever. Watch the little Right Said Fred DVD in the Cowley house forever. Watch all the Men Behaving Badly videos in the Cowley house forever. Watch all The Gladiators videos in the Cowley house forever. Watch all the Good Life DVDS in the Cowley house forever. Watch the all the people singing Abba songs video in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Bananas in pyjamas in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Walking through the jungle in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Walking on the Moon in the Cowley house forever. Watch the Grangewood Christmas Show video with Steven Neary in Cats in the Cowley house forever. Watch the red Coronation Street video with Rita and Mavis and Alec on the boat in the Cowley house forever. Watch the blue EastEnders video with Phil and Grant taking their clothes off in the Cowley house forever. Do massive music tapes with Dad on Saturday in the Cowley house forever. Do massive music tapes with Dad on Sunday in the Cowley house forever. Talk to Dad in the living room in the Cowley house forever. Talk to Dad in the kitchen in the Cowley house forever. Alan will cook your chicken pie on Thursday night in the Cowley house forever. Go to Jay’s sweet shop on Friday and Saturday and Sunday in the Cowley house forever. Go to bed in the Cowley house forever. Do a poo in the Cowley house forever. Have my lovely surprise in the Cowley house forever. Not going to a house with stairs. Staying in the Cowley house with no stairs forever”.

Happy New Year.

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To Earth With A Bump

So that was Christmas 2017. We had a lovely time & the George Cole & Dennis Waterman record certainly added to Steven’s cheer.

But before we’ve taken down the decorations, up popped the council twice to remind us that it’s silly to wish it could be Christmas everyday.

Yesterday I got an email from the social worker about the Community DoLS. She’s got to start all over again and redo the mental capacity assessment! She wants to bring a male colleague in the hope that he’ll engage Steven better. This is to assess whether Steven has the capacity to consent to his 2:1 support arrangements which in their eyes amount to a deprivation of Steven’s liberty.

It is such total nonsense, I can’t put any energy into it at all. Does anyone in their right mind consider having support to go to the sweet shop, a deprivation of liberty? When we go to see the Wham! Tribute band next month, are we seriously depriving Steven of his liberty? The acid test has become totally corrosive of how a normal life functions.

Then, next Wednesday we have the start of all the repair work to Steven’s house that have needed doing since he moved in. We’ve got two days next week of a bath being fitted and then two days the following week of Steven’s bedroom being replastered to repair the damage caused by the damp problem. Then the following week we’ll have to redecorate the bedroom again because the council don’t consider that their responsibility.

I haven’t told Steven yet. He’s coped with Christmas pretty well but there’s still the “am I going to be taken away in January” anxiety to contend with. I’ve had endless discussions with the support workers about how to manage those few days because Steven won’t be able to use his room for at least three days. We toyed with the idea of booking into a hotel but scrubbed that as it may play into the fear of being taken away. The best solution is that Steven stays in his adored Cowley house and sleeps in my room and I sleep at my flat for the duration.

I guess the good news is by this time next month the house will look like it should have done when Steven moved in back in October 2016.

I suspect the Community DoLS business will rumble on much longer.

 

Nearly Time

It’s nearly that time of year again. I’m not talking about annual sprouts and cheesy bollocks day. Unfortunately, I’m talking about the 30th December and the anniversary of Steven being taken away.

It’ll be eight years, a week today and I wish more than anything that I wasn’t still writing about it. But eight years on, the anxiety is still there for Steven. It may not be quite as sharp as it was seven years ago but it’s still making its presence felt, getting in the way of what could be a joyous time of year. At the moment, Steven’s attention (and anxiety) is focused on whether he will get his Edward Scissorhands video on Monday. But he’s already checking and seeking reassurance that life will go on as normal after Johnny Depp has come out of his wrapping paper. It will crank up even more from Tuesday.

We try to speed up time. Each year the Christmas decorations come down earlier and earlier. I will go off on Boxing Day evening, pretending that I’ve got to go to work. But Steven’s not daft and he knows that life is in limbo until January comes along. Or in his marking calendar, until the Loose Women return from their Christmas break. Then he can start to feel safe again.

I can’t imagine it happening again. If I fell ill like I did in 2009, I would go off to my flat to recover and leave the support workers to manage. There would be no question of Steven having to be the person who went away. Ever since the court case there has always been the threat of “a deterioration in behaviour” leading to readmission but I can’t envisage a situation where that might happen and between me and the support team we couldn’t cope. Since 2009, Steven’s coped with three changes of home, the death of his mother and coming off medication and none has warranted the input of in patient services. Probably the worst time for behaviour was when Steven had the liver problem and was in such terrible pain. Imagine if that had led to readmission? His medication (which was causing the problem) would have been increased from day one and he would have been subjected to all manner of restraint techniques that would have added to the pain. Quite possibly, it would have killed him.

But it’s not about what I can or can’t imagine. Steven fears the possibility and that has never really abated. I question whether I unconsciously keep the memories alive. After all, I’m writing this post! I’ve got seven bookings to tell the story at events during January and February. It’s become part of my income stream. Just this week the BASW published an article headed “Five Human Rights Cases That Changed Social Work” and Steven’s story was one of the five. It’s an old story now but the consequences are very much alive.

There is no answer. Sometimes, something happens that affects so deeply that time isn’t the great healer.

Last night Steven was so excited because BBC4 showed their annual Christmas Top of The Pops. We’ve learned that 31 days of awful anxiety are as inevitable as Roy Wood wishing it could be Christmas everyday. In Cowley, we thank heavens that it’s not.

The Boss & Shifting Shifts

I can’t stand being an employer. I’m not cut out for it. In all the jobs I’ve ever had I’ve never aspired to be a manager. But having a Personal Budget forces you into that role. You could argue that if you don’t want to be a manager then don’t accept a personal budget. But where I live, if you don’t accept a personal budget, you don’t get any care.

On Tuesday, one of the support workers phoned in sick. It was completely genuine and I felt deeply concerned about his health. Life goes on though, so I had to shelve my empathy and get on with the task of filling his shifts for the remainder of the week. That was the easy bit. Two of the guys stepped up to the plate and the week has gone very smoothly.

Yesterday I got on with doing the wages. A year ago, I gave the support workers a choice. They could either receive a lower hourly rate and have their sick/holiday pay covered or they could become self employed and receive a much higher hourly rate but lose their entitlement to sick and holiday pay. If they accepted the latter, I would no longer be liable for employer’s contributions, so their hourly rate would be pretty good. All five of the team decided to take up the self employed option.

There is no slack in the Personal Budget. It is forensically calculated by the LA and if they discover any money not spent when they do their monthly audit, they take it back. The PB holder cannot save for a rainy day or for the entirely plausible situation of a worker being absent and having to pay someone else to cover their shift. Steven’s needs don’t go away if a support worker wants time off.

We have a fantastic team of support workers. They are committed and they are loyal. In any 7 day period, there are 24 shifts that need to be covered. That’s 1248 every year. Last night I did a quick calculation and in the last year there have only been 41 occasions when a worker hasn’t been able to do their allocated shift. I think that’s pretty good going and a testament to their commitment to their work. It embarrasses me that I can’t help them out and pay them during their absence. But I can’t because I need to pay someone else to cover that work. I know that is the nature of self employment (I’m self employed myself) but it doesn’t sit easy with me.

In other Personal Budget news, the monthly budget wasn’t paid into the account on Monday. I spent two hours trying to find out why and getting the bank to not bounce the weekly wages due to lack of funds. Eventually the money went into the account yesterday. Twice. I thought they might be paying the January payment in advance because of the Christmas period, but no, it was an error. The LA emailed me their bank details and asked me to send the overpaid amount back.

I thought I would use the opportunity to suggest they have audited me monthly for four years now and perhaps it’s time to acknowledge that the public purse is safe with me. They could do what most other LAs do and reduce the auditing to half yearly. Or even annually.

Guess what the answer to that was?

 

 

Trevor

Forgive me. I’m feeling a bit of an emotional old Hector this evening.

Steven went to Virgin Active for about four years. He used to love standing on the periphery of the water aerobics group and singing along to In The Navy. He made lots of friends there. People like John, and Tony and Malcolm, that he still talks about. The person who made the biggest impact on him was Trevor. Trevor was in his early eighties at the time. They used to meet in the changing rooms. Steven would arrive as Trevor was leaving. Steven used to show Trevor his latest spot, or scratch and Trevor’s response always made Steven laugh – “Take care of that spot young Steven”.

Then one day, Steven had a meltdown in reception and lashed out at Trevor. Thankfully he didn’t make contact but it led to Steven receiving a lifetime ban from the club. Trevor was mortified and tried to speak up on Steven’s behalf but the manager refused to back down.

At the time it felt like their relationship was going the same way as most of Steven’s relationships – nice whilst they last but they never last for long.

That was in the spring of 2012. That Christmas Trevor phoned me. He’d tracked down our number and asked if he could come and see Steven at Christmas. He arrived with a box of biscuits and Steven was over the moon. About the biscuits. And about seeing his old friend. The first thing Steven did was to show Trevor a newly picked scab on his leg.

Every Christmas since, Trevor has turned up the week before Christmas with the biscuits. Even last year. We moved in October but Trevor phoned social services to find out where Steven had gone.

He phoned an hour ago to arrange this year’s visit. We chatted and he told me his wife had been in hospital four times this year, including two strokes. She was admitted for the fourth time last weekend. I told him he had enough on his plate and not to worry this year. Trevor wouldn’t hear of it. He’s too fond of Steven and doesn’t want to disappoint him.

I could never tell this story to the professionals. They’d side with the manager of Virgin Active and be consumed by risk assessing. They would reduce Steven and Trevor’s relationship to a circle of support.

I guess there’s a 60 year age difference between Steven and Trevor.

Their relationship is quietly beautiful. I wouldn’t want that contaminated.

And The Moonbeams Kissed The Sea

I’ve just been watching an episode from season two of Lewis. One of the central characters of the story is Phillip, an art student who is autistic. The second murder victim is another art student called Nell. There are several early scenes between Phillip and Nell and their relationship is sensitively portrayed. As the story progresses it is clear that Nell was the only character who cared for Phillip. In a way it was a love story, although Phillip didn’t seem to appreciate or respond to her love. To all the other characters Phillip was seen as an irritant, or tolerated, or seen as “interesting” or “a weirdo”. When told that Nell was dead, Phillip didn’t cry or ask questions but carried on with the landscape he was painting.

It got me thinking about love. Steven doesn’t do hugs. He doesn’t cry over deaths or sad situations. I don’t think he recognises when someone is doing something for him out of love. He never asks questions about love. In songs, it’s a word that doesn’t prompt any curiousity.

My mind went off to a meeting in the ATU. I had complained about Steven’s clothes being damaged, shrunk or disappearing. He was often wearing other people’s clothes, usually several sizes too small. After hearing me bang on about Steven’s dignity, the manager said something so chilling, I’ll never forget it:

“Steven doesn’t seem bothered. This is about your autism Mark”.

This appears to me to be the nub of why so many learning disabled people die uninvestigated, preventable deaths. It also may be why so many people are wrenched from their homes and incarcerated in ATUs for many years.

If the person doesn’t recognise love, does it not matter if love is given?

There’s nothing in the Mental Capacity Act about love. Nor the Human Rights Act. Nor the Care Act. Therefore it’s not surprising that you’ll never see love mentioned in someone’s care notes. If someone is a “case” or an object, then love is never going to be part of the equation.

Connor Sparrowhawk’s family’s love for him was attacked. In the quote from the ATU manager above, my love for Steven was mocked. Or if not mocked, certainly belittled.  1000s of people will spend Christmas in ATUs away from people who love them. Does it matter that they might not understand love?

I don’t hug Steven. That feels uncomfortable and forced. But I will do acts out of love. I’ve been out today and brought his Christmas Pringles. That’s a hug. That’s a little moonbeam kissing the sea. There won’t be a thank you but there will be a smile and a dance when I lay out the goodies on Christmas Eve. Another little moonbeam.

If the State is going to be involved in family life, it has to recognise love.

If not, we’ll continue with a framing of the learning disabled person as the unlovable who doesn’t need acts of love because they may not know how to receive it.

That’s not a life for anybody.

Or am I wrong to assert my idea of a life onto someone else?

Lean On Me

There’s a lot of nonsense written about “independence”. My last blog post, “An Engagement Announcement” was turned by some into a discussion on independence, although reading the post back, I never used the word once. I wrote about my death plan and imagining Steven’s future when I’m no longer around but it was seized upon as an opportunity to espouse about the importance for a learning disabled person to become independent. Of their family.

I’m going to try and not make any assumptions about what independence means and looks like for other families but I can talk about what it looks like in mine.

I remember the shock during the first meeting with the “transition manager” when Steven was 17 when she pushed me to give her a timescale to when we saw Steven living independently. It was my first encounter with the trickiness of what that word really means. Naively, I equated it to what it meant to me when I left home at 19. For me it meant having to learn to cook for myself, pay my bills and consider things that had never occurred to me before – like it’s important to clean the grill pan every now and then.  I saw less of my family but it didn’t mean that I became emotionally divorced from them. At times of trouble, I would still pop back home to be welcomed by my Dad serving up a cold meat pie.

The framing of the transition manager’s question (as she repeatedly explained) was to prepare Steven for a time when I die. Once again, I found this a tricky concept. When he was 17, I was 48. I was in good health. My Mum died when she was 42, so I was acutely aware that there is no set age for dying. I remember that strange feeling when I hit 43 and realised that I had outlived her. But I felt then (when Steven was 17) the same as I feel now – it is impossible to prepare for life after the death of someone you care very much for. And why should you? You’d have to emotionally detach yourself and run the risk of missing out of lots of good stuff between the detachment and their eventual demise.

Our life has changed a lot in the last year. From being around practically all the time, I now spend the weekend with Steven and see him for a few hours on Tuesdays and Thursdays. He looks upon the weekends as me “coming for a sleepover”. It’s interesting that he’s been drilled in service speak and uses the term “sleepover”. I wonder how many non disabled people planning to host family members over Christmas are viewing that as a sleepover.

As I’ve been at Steven’s since yesterday morning, I’ve been thinking about the “independence” question and reflecting on how it fits into the way the weekend has gone. Yesterday, Steven approached the support worker (and not me) and asked him to cook Steven his chicken pie. A year ago he may have asked me. Is that more independent? This morning, he called out for the support worker to do his shower. There’s nothing new there. I can’t remember the last time I supervised the showering. Is that more independent? As I typed the first paragraph of this post, Steven called me into the living room. He wanted to ask why there aren’t any archipelagos in Cowley. I don’t think he would have asked the support worker that question, whether I was here or not. Is that unhealthily dependent? Steven is about to go to the shop to get his Frazzles. He won’t ask me to come. Is that more independent? This afternoon he is planning a Christmas compilation tape. He fully expects me to take charge of that. The full list of Christmas songs is in Section 9(A) of the Death Plan so he could ask the support worker to do the tape but I expect he’ll want to discuss with me who Jonah Louie resembles from his old school (Answer – John, the minibus driver). After the tape, Steven wants to watch his The Beautiful South on Jools Holland Video. For that 90 minutes, he will send both me and Francis to our rooms. He likes to conduct his viewing on his own, giving his own unique running commentary in his own space and time. Is that more independent?

Most of my writing and the thoughts I have to gauge my sense of my world tends to focus on the “small places”. I hardly ever think about independence for me or for Steven. I know that I am just as connected to my Dad as I was when he died 25 years ago. Possibly more so. This morning, Steven chose as his photo of the day, one taken from the school when he lived with his foster family. He hasn’t seen any of those people for 22 years but they still mean something to him. For me, that goes way beyond independence and having the capacity to cook some sausages and spaghetti hoops in a microwave.

The Beautiful South video includes a few guest performances. The show concludes with Sam Moore joining the band for an uplifting version of “Lean On Me”.

We all lean. It’s healthy and important.

Why should it be so different for a learning disabled person?