I’ve always wondered how Steven viewed Brighton. When he used to do his Massive Good Songs Radio Station, he would ask me who could see his output. I’d reply, “The whole wide world”. To which he would double check, “And Brighton?” He’s never had such concerns about Sweden. Or Africa. But in his head, Brighton occupies a unique space, quite unlike anywhere else.
Steven knows two people who live in Brighton. A friend I made on my initial counselling course, Clarice, moved there in the early 2000s. Clarice was a make up artist for ITN News and Steven held her in very high esteem ever since she gave him a signed photograph of John Suchet. The other friend who emigrated to Brighton was Adam, who was Steven’s personal trainer at Flex gym for five years. Adam still crops up in Steven’s conversation all the time, especially when we’re having a music session because Steven thinks that Adam look like Charlie Reid. And I’m sure that this only happened once but Steven associates Adam with Mika because he seranaded him with Grace Kelly when Steven was struggling with the shoulder press.
A few weeks ago one of the support workers suggested a day trip to the coast. I wasn’t sure. Steven has never been impressed with a beach and all that sand in your toes. A walk around the shops or an amusement arcade will more than likely prompt a sensory overload and the trip will be spoilt for everyone. Then I remembered my idea last year to visit every open air lido in the UK but knew the one at Saltdean had been closed for years. What I hadn’t realised is that a local community interest group had taken over the running of the pool and it had reopened this summer, albeit with limited facilities. A pool is much more up Steven’s street and we could combine the trip with a reunion with Adam and possibly sing a celebratory Letter From America in the process.
Yesterday was the big day. I hired a large MPV. Steven greatly appreciated me wearing my new Quadrophenia sweatshirt – “Dad – it’s Phil from Parklife when he was a young man”. I can’t describe how excited Steven was in seeing Adam. I think it was mutual and they reminisced about times gone by and people from the gym (Dave in the sweaty yellow vest and John who sold flowers). The girl from the cafe didn’t turn up so we went hungry but we had a lovely swim in the (partially) heated pool. We even did our old Abba songs game in the water. You can play it if you like. You sing the first line of any Abba song above water. Then, still singing, you go underwater and you can’t emerge again until you get to the chorus. (Here’s a tip – don’t try it with Chiquitita unless you have fins).
It was as close to perfect as you can get:
“Is this heaven?”
“No. It’s Brighton”.
Yesterday was Steven’s six monthly check up with the psychiatrist. I knew he wouldn’t want to go. No matter how many times I’ve reminded them that Steven needs 2:1 support when he goes out and we only have two staff on duty in the mornings, they always arrange an afternoon appointment.
Steven had already made plans for the afternoon. The Tuesday routine is water aerobics, back home for lunch and change of bedsheets and then a nice DVD. He’s working his way through his Abba Deluxe collection this week and yesterday’s installment was the one with the Saturday night Swedish spectacular from around 1976. Think Seaside Special, only this is called “Den Magiska Varlden en Abba”. And that’s what it’s called, so that’s what Steven calls it.
I compounded matters by throwing in a curve ball. When I did my talk in Cleethorpes two weeks ago, the organisers gave me a present for Steven. They checked out my blog for things he might be interested in and came up with a digital photo frame. It was so kind. I was going to save it for Christmas but after downloading 338 photos I became impatient and gave it to him after swimming. He was over the moon. We set up a slide show and even en wondeful Abba had to wait.
The winner takes it all but the loser has to fall which meant I ended up going to the psychiatrists on my own. For the past few years I’ve left that task to the support workers. It’s an utterly pointless fifteen minutes and I always get uncomfortable because I end up completely incongruent. I act out my role as grateful father and thank them for their time and insight. I verge on the obsequious.
I was collected in reception by the consultant’s junior and was led to the room. Shock number one was to find it was the same room I was thrown out of back in 2010 during Steven’s infamous mental capacity assessment. The consultant was busy, so I was left with the house doctor. A personable young chap whose knowledge of Steven extended to what he’d gleaned from reading his notes, five minutes earlier. But he seemed interested and he laughed at my joke.
We talked about two things: Steven’s weight and his mood. We weighed Steven at the weekend and although he is still losing, it is slowing down. Mind you, he has lost 12 stone since he stopped taking the risperidone. The doctor expressed delight at the weight loss but felt there wasn’t a strong link between the weight loss and the medication withdrawal. Now the honest thing to say in that moment is: “Are you kidding me? The drugs were killing him. This has saved his life”. But I don’t say that. I do refuse to play the game of putting it down to diet though. Steven’s diet hasn’t changed at all (well, apart from going off Yorkshire Puddings on Sundays).
Then we get on to mood and I describe how Steven’s brain is more active post meds and how that can lead to an increase in sensory overload. I tell him how our Sunday afternoon taping session takes twice as long as it used to because Steven’s brain is working quicker. It seems obvious to me – he is no longer sedated, so things have speeded up. The psychiatrist didn’t see it that way. He wasn’t convinced that it was down to stopping the meds. “Have there been any other big changes in the last year?” I mentioned the house move and the doctor announced that explanation was more fitting. The change to routine and having to get used to a new environment was the more likely cause. I smiled. I’d given up by then.
What do I expect? A psychiatrist’s job is to prescribe medication. I can’t expect him to own the fact that the medication is killing his patient. Or that stopping the medication may result in a change to brain functioning. It’s too truthful. It’s too big. Although the elephant in the room is pretty big too. So we collude in the lie. Does it matter? It was only for ten minutes. The doctor will see his next patient and I’ll dash back to work for my next client. Ten minutes of inauthenticity and back to normality.
On the bus going back to work, I phoned Alan the support worker to give him an update. He said Steven had only just finished watching the slide show and in the background I could hear Sven announce: “God Kvall Sverige. En wondeful dag” and the glorious intro to Dancing Queen kicked in.
And I knew we were back on safe, honest ground.
I’ve been working on a new project out of the embers of 7 Days of Action (Expect an announcement shortly).
I have been trying (amateurishly) to compile a resource of the number of beds of the main providers of in patient services/ATUs for people with autism and/or learning disabilities across the country. I have probably missed many of them.
I then went on to roughly calculate the weekly income those providers can make from their services. We know that the cost of an ATU bed can vary from anywhere between £3K to £11K per week. I have gone for a very conservative average weekly fee.
Here are the results:
Huntercombe Group:
Number of Beds: 260
Weekly Income: £1.3million
Danshell Care:
Number of Beds: 56
Weekly Income: £280K
CAS Healthcare Ltd:
Number of Beds: 311
Weekly Income: £1.55million
Jeesal Akman Care Ltd:
Number of Beds: 54
Weekly Income: £378K
Priory Group:
Number of Beds: 227
Weekly Income: £1.1 million
St Andrews Healthcare:
Number of Beds: 1140
Weekly Income: £7.7 million
Partnerships in Care Ltd:
Number of Beds: 47
Weekly Income: £235K
Cygnet Healthcare Ltd:
Number of Beds: 771
Weekly Income: £3.85 million
Affinity Healthcare:
Number of beds: 223
Weekly Income: £1.1 million
Mental Health Care UK Ltd:
Number of beds: 69
Weekly Income: £590k
Right. I’ve got that off my chest. I can get on with my Sunday now.
This week sees the opening of a new “autism village” in North Shields. It’s very much, of its kind or as the company’s spokeswoman says, “the first of its kind in this area”.
Before reading on, have a look at the village and see what you think:
http://www.chroniclelive.co.uk/news/north-east-news/north-shields-siena-court-care-13597999
“Village” is interesting framing. From the advert, it doesn’t look much like St Mary Mead. From the outside, it looks very much what it is – a converted building. But call it a village and announce that it’s got a shop and a cafe and the reader is manoeuvred to images of tea and scones at the vicarage and morris dancing on the green. Complex needs solved with quaint solutions. In fact, I heard the design team called in Rupert Brooke.
It’s 2017, so needless to say, “independence” is plugged big time. All 17 residents will live independent lives. All individual needs will be catered for. Independence will be alive and kicking in the communal dining room.
A few questions to the owners:
1. Will each of the 17 residents really get the 1:1 support that you claim? Are you going to have 17 care staff on duty at all times? No pooled budgets?
2. If one of the villagers wanted to eat their meals independently of the communal dining room, will they be able to?
3. Can a villager have someone come to stay with them?
4. Can a villager go to a social event outside the village in the evenings?
5. Can family and friends visit the villager in their individual appartments?
6. If a villager is already a member of Virgin Active, can they independently continue to go there with support instead of using the in-village gym?
There are probably 100s more questions that could be asked but I could go on for hours and I probably will just to put some joy back in to a village called Sienna. Ooh yeah.
I’m pitching the idea of a new reality show – Celebrity Autism Village. 17 celebs pitching up at Sienna and anyone who doesn’t embrace the independence of the experience is gunged and sent packing.
The first cast list is: Burt Reynolds, Pat Coombs, Griff Rhys Mogg, Sean Spicer, Princess Eugenie, Zola Budd, Bobby Brown, Lester Piggot, Patti Boulaye, The Krankies, Penelope Pitstop, Bernie Flint, Skippy, Queen Latifa, Ronnie Kray and Roy Lilley.
Be warned – Ms Boulaye likes to eat her cornflakes independently.
Another of those odd trips down memory lane.
It was only yesterday that I wrote a post about the latest sign of Steven spreading his wings and wanting me less.
Today I’ve come up to Cleethorpes. Tomorrow I’m delivering the Get Steven Home talk to a group of social care professionals from North Lincs.
Cleethorpes was the place we took Steven to on day three of our introduction week prior to his adoption. The day, back in 1995 was going swimmingly. We’d been on the beach, had a fish and chip lunch, the full seaside business. After lunch we went to a place with a ball pool, which Steven always loved. Upon leaving the pool, Steven excitedly started tearing around the room and went smack, head first into a slot machine. He actually catapulted backwards. Trying to comfort him, both Julie and I were hit by the thought – “Fuck! We’re meant to be showing that we’re ideal parents and we’re taking him back to the foster home with serious concussion”. I ended up carrying Steven for a couple of hours and then he threw up all over my back and was as right as rain after that.
I wrote about the compilation tapes yesterday and that memory often comes up when we play the Girls Aloud song:
“I’m just a game machine (at Cleethorpes)”.
Tying in with the talk tomorrow, I remember us coming back to Cleethorpes on the last day of introduction week. The social worker had meetings to attend in the morning but said she’d pick us up at the pier at noon and drive us back to London. Her last words to Steven as we drove off were:
“Right Steven. Let’s get you to your new home”.
I’m typing this post whilst sitting on the prom and staring out to sea. I’ve been sitting in the same spot since 6 o’clock. It’s now 7.45pm. Two guys have been paddle boarding since I sat down and I’m finding them totally compelling. I’m hypnotised by them and can’t move. I might still be here at midnight.
For a split second, I thought I saw several dead aunts and uncles emerge from the sea, wave and disappear again.
These regular reminders of the past that I’ve been getting this year don’t feel, as someone suggested, like tying up loose ends. To be honest, there never felt like ends that needed tying. But it feels like something significant is happening.
At one point, I got up and brought myself an ice cream. When I returned to my bench, I couldn’t immediately spot the paddle boarders. And then a thought hit me. Everytime I go away on one of these talks, at some point during the visit, I’d think of Steven being here, perhaps enjoying the hotel cooked breakfast, or swimming in the hotel pool. Today, I hadn’t had any of those thoughts.
I’m here on my own, thinking about Cheryl Cole whilst watching the height of athletic prowess out at sea.
And it feels more than okay.
Feeling sad. It’s been another difficult weekend and feels like one of the very few things Steven and I do together is on its way out.
Since Steven was 11 we have spent the weekend afternoons doing two C90 compilation cassettes. Steven would listen to the Saturday tape back on a Sunday morning in that unfilled time between Match Of The Day and leaving for the Mencap pool. Back in the day, Steven would take his Sunday tape into school and listen to it back at break times on his Sony Walkman. In more recent times, Steven takes the tape to the Arts Centre in a Monday to play in their music room.
It used to take two hours to do the tape after careful preparation on my part beforehand. I’d write down each week’s playlist to ensure a varied selection week by week. The biggest joy for Steven was hearing a song he hadn’t heard for a long time and with over 5000 CDs, that was fairly easy to achieve.
I’ve written a lot over the past year about how the ending of the psychotropic medication has sped up Steven’s brain. He has responded magnificently and slowed down various aspects of his life because he is conscious of his overload. Without an army of occupational therapists and the like, Steven has restructured his life so that he can manage the faster brain activity. At the same time, stopping the meds has led to such a massive weight loss that he is now much fitter and more physically active. Both these things have major implications for the taping sessions.
Let me explain.
For 16 years, Steven has followed the same routine for each song that goes on the tape. During the first verse and chorus, he dances whilst he expects me to sing all the words. Then he’ll sit down and name all the people in the band. Then there’ll be a story about those people – it could be who they look like in Steven’s real life, something about the singer’s history, a memory connected to the song. Whatever, there is always a story to accompany each song. And then, stories complete, Steven will look at the pictures on the CD sleeve. All this has to be achieved before the song finishes. If not, a meltdown is probable because the routine hasn’t been achieved.
With Steven’s brain speeding up, it’s become harder to achieve the routine. As an example, let’s use one of his favourites, This Town Ain’t Big Enough For Both Of Us by Sparks. The track is 3 minutes and 4 seconds long. The first 90 seconds sees Steven bopping through the living room, hall and kitchen like Anton Dubeke on speed. Then he names Russell and Ron. Then the story:
“Ron’s a scary man. Ron’s cross and looking at Steven Neary because….”
And I have to remember to reply “Because Steven Neary threw water over Tigger Carter in 1998”. (Tigger Carter was next door’s cat).
And then a look through the pictures on the sleeve. In the case of Sparks’ Greatest Hits, this takes some time because Steven is fascinated by the picture of Ron and Russell in gorilla costumes.
Imagine that intensity for 25+ different songs!
The last two weekends, we’ve only completed one of the four tapes. And that took three and a half hours. The rest were ended by a meltdown about a third of the way through side two.
I’ve tried to accommodate the changes to Steven’s brain functioning. Groups with lots of members (Darts, S Club 7) are out because it takes too long to go through everyone’s name and we’ll probably still be talking about Griff Fender as Daddy Cool comes to an end. So nowadays, we’re more likely to have solo artists or duos like Sparks. Every alternate track now will be from one of those compilation CDs like 101 Hits from the 90s because there are no pictures to look at on the sleeve. Saves a bit of time. And short songs are out. Which is a shame because we can’t have Dreaming Of You by The Coral anymore (Too many band members to name in two minutes and 38 seconds). Something like The Lightning Seeds’ Marvellous is more appropriate at five minutes and 25 seconds.
I now spend quite a few hours on Thursdays planning the weekend tapes. But it feels like we’re reaching the end of the road. Steven does music sessions with the support workers but they are less interactive. He’ll pull up one of the dining table chairs next to the CD player and play the whole CD through. He’ll still sing and dance with the support workers and name the artists but over the course of a whole album, it’s much less stressful.
Stopping the medication has had so many consequences, especially in terms of our relationship. It was necessary to save Steven’s life. He’d have been dead by 40 and listening to Sparks’ Number One Song In Heaven, in heaven. So it had to be done but, oh boy, has it involved some losses.
So for now, it’s over and out to Russell and Ron:
Yesterday, Radio 4 broadcast a play about the Bournwood case, the case that led to the introduction of the Deprivation of Liberty Safeguards. It was beautifully written and the performances of the key players felt totally authentic.
A link to the play is here and the drama is followed by a studio discussion of the case which included Mr E and H’s solicitor:
http://www.bbc.co.uk/programmes/b092fbr0
I’ve seen a small handful of criticism online from people who felt that some of the professionals portrayed were unrealistic. For me, those scenes absolutely rang true and contained some of the greatest horror within the drama.
One particular scene graphically summed up the terrifying imbalance between the professionals and the family. It showed in the starkest of terms, how HL had been turned into an object and how the family’s years of experience counted for nothing. The scene involved Mrs E being taught how to support H getting undressed and ready for bed. This had never been a problem at home but to validate the “treatment” it was imposed on HL and Mrs E in the most brutal way. Obsessed with behaviour management programmes, an OT led Mrs E through a script that she was ordered to follow. The growing desperation in Mrs E’s voice as she realised the futility of this game but afraid of the consequences of challenging it, was deeply moving.
I cried because the scene hurled me back to 2010 and although 16 years on from Bournwood, I was put through the same indignity. I was called in twice, once at 7am and then the next day at 6pm to be taught how to support Steven with his bathtime routine. No matter that I’d been doing it for 19 years with no problems, the positive behaviour show was in full swing. I sat on the toilet as a shift leader taught me how to rinse Steven’s hair after shampoo and then I had to demonstrate what I’d learned as she marked me on an “parental observation chart”. I had to bite my lip hard to stop myself crying or shouting. It was abject humiliation.
At the same time, another element of the “treatment programme” was speech therapy and I had to be retrained in how to talk to Steven. I was given several laminated guide cards with instructions for me on. I’ve still got them in a box in my garage: “Never use more than 3 words in a sentence”. “Stretch each vowel out like a piece of plasticine”. I had the shaming experience of being observed and marked whilst supporting Steven make a toasted cheeeeeese sandwich. All the time having to deal with Steven’s bewilderment that I was talking so peculiarly. “Dad’s doing silly talking”.
The family is done up like a kipper. The outcome of Mrs E’s shaming was to add more and she was labelled “uncooperative”. The same with me. In their report for court, Hillingdon wrote: “we do not believe that Mr Neary will follow behaviour management guidelines”. The same stunt that was pulled on Mrs E in 1994, was used on me in 2010, was used on Sara Ryan in 2013 and is still being used on families today. First the family is labelled “uncooperative”. That moves on to “abusive”. And then questions are raised about your mental stability. It’s a standard template that gets more and more terrifying as you move through each phase of the accusations. Because it all means that a case is being built for your child never to be returned home. I wrote in my diary one day, “Steven may end up in a long term hospital because I talk to him in more than three words”.
One thing that bothered me with the play, especially from the assertion of the presenter was that things have changed dramatically since 1994. The drama covered the horror of H’s feet turning black because the staff used to stand on them as a form of restraint. That hasn’t changed. Just a couple of years ago, Jamie Newcombe’s arm was broken whilst he was being restrained.
Nothing has changed much. It’s true, since 1994, we now have two chunky pieces of legislation that are meant to prevent further Bournwoods. The Mental Capacity Act and the Deprivation of Liberty Safeguards were introduced but as the 7 Days of Action campaign revealed, they don’t even touch the majority of the 3000+ people currently detained. Just this month, we heard at the GMC Hearing into Dr Murphy (Connor Sparrowhawk’s psychiatrist) that she believed she was above the MCA and therefore, Connor’s rights were trampled on.
Precious little has changed. What happened to Harry still happens 23 years on. The complete randomness of admission. The total power of the responsible clinician. The absolute belief of the responsible clinician in their rightness. The blocking out of families for weeks whilst the institutionalisation takes place. The introduction of dangerous medication regimes from day one. The hostility towards families and the attempts to crush them. The ignoring or abuse of the law.
Mr and Mrs E are inspirational People. Driven by love and duty, they saved H’s life and fought for over 15 years to get the law changed to protect H and others like him in the future. Their ordinariness and humanity continues to expose the ludicrousness of the “State knows best” attitude that is so prevalent in so many of our services.
Mr and Mrs E – thank you for helping me and Steven. For being our friends. For making us laugh like drains at the hideousness of the system. For showing us that love can win through in the end.
