Tag Archives: support

Definitely not laughing boy

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LB is upstairs, muttering and smacking his legs, shouting out and watching scrap metal videos on youtube. We had a burst of sunshine this afternoon when he came down for a piece of coffee cake and chuckled about how good it was. Funny how tiny snatches of what was can be so powerful. I went up to see him a short while later but he was talking a bizarre type of gibberish and looked at me with hatred. He muttered about how Sara had been killed.  “Ok, matey, I’ll be downstairs if you need anything”, I said,” [fake] cheerfully.

We are occupying this strange, exhausting, stressful space at the moment. He’s threatened Rich but remains OK with Tom and Owen. We have the medication to knock him out if necessary, though where the line is drawn between deciding he needs medicating before it’s too late to get him to take it isn’t clear.  We are piecing together strategies; not say no to him outright, prepare him carefully for any expectation he will do something, listening constantly for any shift in tone or intensity, mentioning any past special interest (Mighty Boosh, Irish lorries, cross channel ferries) to try to snap him, even fleetingly, into the coffee cake mood.

Today I chased up social care. Yes, despite the set of exchanges on Friday afternoon with the learning disability team, I had to contact them. The duty Care Manager seemed active and concerned which is great. He put me in touch with someone from Southern Health Outreach (based at Saxon House, the building with the snooker table). I rang them and have an appointment for April 3rd. Seventeen long days away. The psychiatrist rang straight after. She suggested we meet or have a telephone consultation soon. Er, right now would be good, I said. She found her notes, listened to me (without really listening) and suggested doubling his anti-depressant. We are meeting her in a week to see if this has helped. The psychologist was already booked in to meet us on Thursday. That is no support our support right now.

I’m writing these miserable posts because I think that we shouldn’t (not we as in our family but we as in every family with a dude like LB) be in this position. It screams to me that support and services are woefully inadequate and structured in a way that ultimately cause harm rather than good. LB’s following in almost identical footprints to a classmate, a situation I never dreamed of six months ago.

Now I ain’t a psychologist, or a psychiatrist, but I think LB probably wanted a mate, a girlfriend and a slightly different structure to his life. And now he’s retreating into some hideous fantasy type world that has got trouble written all over it. Doubling anti-depressants and organising late in the day, middle aged carers isn’t going to do an awful lot. But hopefully I’m wrong.

Comic relief day. No.

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LB punched one of his teaching assistants* in the face this morning.

Horror.

I rang the emergency number on his Care Manager’s ‘out of office’ email and was told someone would ring back. The guy called back ten minutes later and suggested a referral to the learning disability team nurse who specialised in challenging behaviour.

“Ok, how long will that take?”
“Well I’ll put the referral through next week and she’ll get in touch when she gets it. I’m not sure how soon she’ll be able to come and see him though.”
“Eh?? Have you listened to what I’ve said?????” 
“Er, sorry?”
“What are we supposed to do in the meantime, if he turns on someone else?????”
“Well, I could make it an urgent referral I suppose… Ok. I’ll put it through as urgent then. And there is a psychiatrist too. I don’t know if….”
“She.discharged.him.last.week.”
“Well I could try ringing her this afternoon.”

Thirty minutes later he rang back.

The psychiatrist had gone home, he’d spoken to the duty psychiatrist; we have to go to the GP and ask him to ‘escalate’ LB to the psychiatrist.

I’m putting it out there now, the support and services for young learning disabled people in Oxfordshire is worst than crap-shite. Unacceptable. Please feel free to pass this link on to anyone in health and social care. Or anyone really. Things HAVE to change. And not just for LB.

*Sue, who has gone about as far beyond the call of duty as you can with LB, including getting in contact with mermaids around the world and sitting around in a stinking, freezing cold workshop every Wednesday, while LB does mechanic training.

Limits and horse-shite

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Well the light hearted, fun chit chat involving LB and his unusual take on the world, that partly inspired this blog, seems pretty distant now. I’m glad I captured some of it on these pages. It’s currently masked by reasonably regular extremes of behaviour that are unpredictable, aggressive and deeply upsetting. The trouble is, there isn’t any real (effective, valid, meaningful) support to deal with this.

I got a call at the beginning of a meeting in Manchester on Monday, after a Mother’s Day that included, in equal measure, horror and lovely, lovely love stuff. LB had had a serious meltdown? crisis? situation? at school. It sounded awful and his teachers and the school nurse were understandably shocked and upset by it. I could only say, standing in the corridor, trying not to cry with the futility of the situation, ‘I don’t know what to do’.

Cripes. Well who does know? Who should know?

Er, health professionals? Highly trained specialists who have the relevant knowledge to help LB and guide us through this.

No. Not really.

Trouble is, they won’t say that.There is a faux professionalism that involves sticking to a script that is irrelevant. Without that script there is nothing. LB’s unusual behaviour challenges, tests or confounds the boundaries of their knowledge. And this, in turn, is complicated by the resources available. This is not a comfortable situation for anyone, so we go through the motions in a performative way. Questions asked. Answers given. And they (pick your health professional) ease out of our home. No further forward. No change.

Tomorrow it’s the turn of the (learning disability service) psychologist, who was passed the baton by the (learning disability service) psychiatrist (who did nothing). Our GP embraced her contribution this afternoon in an obviously appalling situation.  I promised to be open-minded when I meet her.

“Can you prescribe something like a horse tranquilliser as well, maybe with a dart gun, for those particularly tricky moments?” I asked. “No,” he coughed, “this can’t be resolved through medication. LB needs help to learn strategies to manage his behaviour, aggression and anxiety. That is the role of the psychologist.”

“Ah, okeydokes,” I said, leaving his office, with my promise taking a hammering.

Choice and autonomy my arse

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At the moment our lives are becoming increasingly [hahahaha] complicated as LB has become very anxious and distressed. We’re in a big old hot pot, dealing with support and services underpinned [big fanfare] by the gov’s personalisation agenda. Key principles; Choice and autonomy.

Well this sounds like the baby. Choice and autonomy.. lovely, lovely, lovely. Let’s have a little looky at how this is shaping up eight weeks on;

Social Services. After a complete meltdown that resulted in LB out of school for a couple of weeks, the Care Manager acted instantly to organise a wedge of emergency direct payments for us to buy care. Good. We can choose what type of emergency support we want. Unfortunately, the kind of people who may be willing and able to hang out with a 6ft tall, young man who may, or may not become aggressive, are not that much in supply (and hugely in demand). So in practice, not so good. The alternative is the Respite Centre with the snooker table. Complete fail. CM also offered to organise a round table meeting. Good. And, after a particularly alarming incident (Episode A), has given me an emergency number to call. Good. Unfortunately, if we call that number we are opening a window for LB to potentially be sectioned. ‘Mmm. Well I’m sure they will do what’s best for him in that situation‘…I hear you think. Not really. ‘What’s best for him’ relies on what’s best for him being available. Not a mental health unit over a hundred miles away in Norwich where two of his class mates have spent months. There is no in-county support for young learning disabled people. That is a complete fail.

Health. The GP instantly prescribed anti-depressants over the phone without hesistation. Good (in the sense he took our concerns seriously, not that LB is now on more medication). After LB mumbled something about suicide near some professional type person, he was whizzled into a same day appointment with a psychiatrist. Good. (Well a bit weird that the concerns we have are largely ignored but one word gets instant attention). The psychiatrist asking LB if he felt suicidal was a complete fail. Never, ever put ideas into that boy’s head like that. She then, after a telephone appointment 6 weeks later, discharged him. Not so good. ‘Why are you discharging him?????’ I asked, seconds after I’d told her about Episode A. ‘He was referred to me because of the concern about suicide, now that is no longer a concern, the psychologist will help him to manage his anxiety.’ Not so good [and given our experience with psychologists over the years (star charts anyone?) suspect this detour will be a complete fail].

So what are we left with? Money to pay for care. No care to buy. And no one doing anything to help LB become less anxious.

Choice and autonomy? Feels a teeny bit flaky to me. Can we have some action?

The Stranger

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I stopped LB happily mending the downstairs toilet this morning, once it started leaking. He went apeshit. With a spanner in his hand. The language was dripping with expletives and the toilet seat took a hammering. With his head. He stormed passed me and went upstairs. I hung up some shirts in the wardrobe and the rail fell down. The rage continued upstairs, directed at me. I put my keys in my pocket and hovered near the front door. Billy Joel’s The Stranger came on the radio.

Yep, I thought. That just about sums it up.

Monitor, distract (and Chunky Stan)

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Brief summary. LB’s become very anxious, constantly agitated and out of sorts over the past couple of months. He’s developed a fear or phobia of someone harming him.  His teacher/school nurse have suggested he be referred to mental health services which we’ve resisted. First, because we feel the medicalisation of these dude kids is a bit too free and easy (and can be damaging), and second, because previous encounters with mental health services have been pretty pointless (along the lines of “Er, have you thought of using star charts?”)

ryan5-25Then the Christmas tree fell over. Probably because all the baubles had been put on the same branch during a bun fight deccy situation. ‘Mmm’.. I thought. ‘This don’t bode well’….

Christmas morning, LB lost it over a tiny thing and had a distressing episode (? breakdown? frenzy? malange? Slinky malinky?) Not sure what language there is to describe this sort of thing, other than crap, meaningless jargony social care/health type stuff). But horrible. For everyone. Especially so at Christmas.  He stayed home, rather than going to his dad’s, and we swung into a ‘monitor and distract’ routine. For those of you who haven’t come across this (you lucky bastards), it goes like this;

    1. Constantly listen and look for any signs of mounting distress (in LB’s case, talk of being attacked, gesticulating and gurning).
    2. Act instantly to stop these (in LB’s case, through a firm ‘Stop it now’).
    3. Follow this up with a distraction (in LB’s case, an Eddie Stobart book, Mighty Boosh DVD, drawing cartoon figures).
    4. If necessary, follow this up with an uber distraction (in LB’s case, a very long, hot bath).
    5. Revert to A.

ryan5-23So 48 hours of monitoring and distraction was successful but relentless, wearing and, again, pretty shite over Christmas. We also weren’t confident of containing his distress anywhere other than home. I called the GP who suggested a type of prozac. And some emergency tranquillisers to use, if necessary, until the medication started to work.

That was yesterday morning. Last night (after step D) LB turned into a bit of a chill pill. We stayed up watching documentaries like Cop Squad with him. Enjoying the peace.

A mistake of course. Other family members also need monitoring. Like cheeky Chunky Stan.

ryan5-24

Transition (a steady descent)?

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Here’s a photo I love of LB  at his last but one residential school trip in Devon. The one before last week when he had to be collected at a halfway point on the motorway, half way through the week. Because he was distressed, anxious and lashing out at a staff member.

OLYMPUS DIGITAL CAMERA

I’m not sure if I’m posting this photo to hold onto his obvious enjoyment/happiness during the trip, facilitated by school staff who consistently push the boundaries with the kids, or whether I’m posting it as a record of transition (which I’m increasingly interpreting as a steady descent) into ‘adult services’. It’s probably a mangled combination of both.

I don’t understand how we allow (stop? prevent?) this descent. This change from a reasonably happy dude to someone who finds themselves at odds with life. The circumstances around LB’s current anxieties are, at the same time, specific, random and seemingly  ‘irrational’. So difficult to understand and make sense of.

Lashing out at people, and demonstrating intense upset is hugely upsetting for everyone involved. It’s happened sporadically (but memorably) in the past, but it’s uncharacteristic for LB to be so consistently unhappy. He’s pretty much had a much loved role in our family. He’s happily bypassed years of bickering, fights, wanting to win, score, or just be heard. He’s always occupied his own space, peppered with youtube and Eddie Stobart (and, thankfully in the past, Keane). For the last couple of months, he’s been unreachable, different, anxious, unpredictable and unhappy. And fucking irritating.

I was kind of pleased the GP today resisted referring LB to mental health services. He said it was medicalising a problem that wasn’t medical. I agree with that. And appreciate his refreshing approach.

But how do we stop the descent. How we get the happy surfer dude back? And who will help. It shouldn’t be like this.

Celebrating segregation?

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I ain’t surprised that only 35/1000 ex-Remploy workers have found new jobs, despite the 18 months of ‘individualised support’ offered to them by Maz Miller. I can’t imagine the impact on those 965 unemployed people (and, as importantly, their families). Of losing that structure, social dimension, coherence, and wage. I dread to think how it will affect their sense of self worth, isolation and health. Especially with alternative employment looking an impossibility. Anyone who talks about ‘benefit scroungers’ is talking crap. Apart from a small minority, work is a central focus of human/social life. End of.

I don’t support (or celebrate) the idea of segregated employment at all. I support the right for people to work, regardless of their ability, and this work should be mainstream (whatever that means).  But I know that’s an idealistic and, in the current UK economic environment, totally unrealistic position.

Closing the Remploy factories was a financially driven decision. While throwaway and meaningless statements about decreasing segregation were made, it was about saving money. We are no nearer to an ‘inclusive society’ than landing on the moon, finding out what ’causes’ autism, or whether there is life on Mars. Shedloads of money are thrown at the latter two but very little is invested in workable solutions to increase and support learning disabled people in mainstream work.

Until people (learning disabled people, carers/family members, general public, policy makers, practitioners, government ministers) start to talk openly and realistically about the issues involved, nothing will change. It reminds me of my early research looking at the experiences of mothers, learning disabled children and going out in public places. I found there were limits to the tolerance you could expect from other people. The bar is commonly set way too high (for prissy reasons) but, even when lowered, some things ain’t gonna be acceptable. Until we engage with these (sometimes awkward, uncomfortable?) issues, and have some open, creative and realistic thinking about what can work and how, why force (longterm) unemployment on hundreds of Remploy workers?

A fledgling plan

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Ok. I’ve been thinking about this for a while now. But only in short bursts. I thought if I start to document these thoughts, it may a) give me a kick up the backside to explore it more fully b) contribute to discussion/different ways of engaging with young learning disabled people and c) maybe get some tips, experiences and links.

So, LB is 18 in a few weeks. He is very funny, hard working and sensible (in an unusual way) with some serious interests around transport, recycling and justice. “Transition” so far has been pretty shite as I’ve documented. The future is not looking bright.

The facts as I’ve gleaned them (not easy); He has one more full year at school after this one. After that, he will be entitled to direct payments to create support for him.  What this means is not clear. There’s a chance of a further year at a local college to learn (more) life skills. Given that his sixth form are currently doing a cracking full on job of teaching life skills, I’m not sure that there is much point in an additional year. Well other than to occupy his time. After that, it’s day centres (shudder) or a life of being taken into town to go to the cinema, bowling or hanging out at home with a paid carer.

The fledgling plan..

To set up a small social enterprise scheme; get a loan, buy a small van, a mobile industrial shredder, employ a co-ordinator and run an odd job business. The odd jobbers. The idea is to draw on the strengths of LB and other young people and celebrate diversity/eccentricity. LB is an attention to detail kind of dude when pointed in the right direction and encouraged to stay there. Other young people I know have an infectious joy in meeting people (though not always joyful to their parents) and interacting, strength, humour, an ability to hang out cheerfully and other skills. The plan is to create a community presence where the odd jobbers become known about locally. People, and local businesses, enjoy the service they offer on a social, as well as financial, level. Driving round, collecting shredding, or bits for the dump, small deliveries and so on. Creating employment (for however many hours a week) and the associated benefits (productivity, achievement, activity, purpose, structure, pay and a social life) which is priceless.

There are enterprises that are doing similar type work across the country. I was pointed in the direction of Props who offer brilliant opportunities for young people in the Bristol area. But there are layers of hoops and bureaucracy to negotiate as local authorities interpret what direct payments can be spent on very differently. We had a taste of this when LB went on a “summer holiday” with a few other young men, funded through direct payments, only to come back with an extensive learning log. Oxfordshire county council insist learning outcomes are attached to funding. Props have had to create an accredited course for their enterprise. Choice and autonomy within a personalisation agenda? Forget it in practice.

These are early thoughts. It may be a vague, unattainable, undoable daydream. [Like my decluttering intentions..cough cough]. I’ve no idea how it could work in practice. But it feels better to think in terms of action. And involvement. Rather than just letting things pass by.

The end of year assembly

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This morning was LB’s end of year assembly. A time of celebrating and sobbing. This year kicked off with Shine by Gary Barlow. A couple of young girls opened brilliantly with the first line or so then everyone else kicked in with a range of voices, shouts, words and signs. Everyone was rummaging around for tissues within seconds.

It’s the same every year.

I remember one year, when LB was about four, I’d just bought a video camera which I was really looking forward to using. The kids were brought on to the stage dressed in colourful tunics (for the ’round the world’ theme) and stood in a semi circle. I managed to locate LB in my viewfinder, with his angelic little face, pressed record and then they opened with “What a Wonderful World“. The rest of the footage is the floor, feet and chair legs and about 10 seconds of LB and his classmates singing and signing;

I hear babies cry, I watch them grow,
You know their gonna learn
A whole lot more than I’ll never know…

Not a dry eye in the house.

I think some of the emotion is about seeing such a diverse group of kids performing their socks off but it’s also seeing the staff interacting with them. They are an exceptional bunch who offer unending support and encouragement.  In this setting, unlike most others, our kids have no limits.