Monthly Archives: April 2012

The IEP

Posted on by
Reply

LB came home with his Individual Education Plan today. The first target is;

I will introduce myself at the beginning of a conversation with new people.

“Ooh, that’s a good first target, LB. So what are you going to say when you start a conversation with new people?”
“Dunno Mum.”
“You’re going to introduce yourself….”
“… how about me and Mum show you, LB? Pretend we don’t know each other and we just bumped into each other in a shop….”
“Hello, I’m Sarasiobhan.”
“Hello, I’m Tom. Pleased to meet you.”
“Your turn, LB. You bump into me in a shop. What do you say?”
“Hello Mum.”

So to the future..

Posted on by
1

I’ve been trying to avoid thinking about this, because the future does not look rosy at all. But it’s gotta be done.

The facts:

  • LB is 17.5 years old.
  • He can stay in his sixth form until he’s 19.
  • There is a possibility he can attend a local college for a one year, two day a week, course.
  • After that, nothing.

Considerations:

  1. What is this funny, hugely bright in some very specific ways (but not in any ways that are recognised in the workplace), young man going to do with his life?
  2. Whose is responsible for his care when he’s an adult?

I dread to think what LB is going to do. His current social worker (soon to be replaced by a transition social worker) said that the best we can hope for, is to make personal contact with a local small business/enterprise and organise paid carers to support him in some activity with them. Wow. The provision of support and services for learning disabled people is clearly cracking in the 21st century. I can’t see how this local work activity (if any were available) can be organised without a huge investment of time and goodwill. Whose time and whose goodwill? And with a high level of ongoing management. Alternatively, he may receive enough of a care package so that we can employ someone to do something with him on a daily basis. Something? What? And where?

Caring for someone in this country is, to be blunt, a pile of crapshite. The use of the word ‘care’ muddies things and allows a persistent level of exploitation that is completely unacceptable.  Carers are paid £58.45 per week on the basis of a 35 hour week. How we can possibly distil the work carers’ do, often 7 days a week, on call for 24 hours a day, into a ‘working week’ is plainly wrong. If you earn over £100 a week, you don’t qualify for carer’s allowance. It’s an all or nothing jobby. And as for carer’s assessments (introduced circa 1995) to enable carers’ to say what would make caring easier for them?? I’m still waiting to have one.

Ironically, LB will probably (possibly? who knows with the current cuts in welfare) be given a care package involving direct payments that, in principle, allows him (that is, us) to buy care from external people. These people are currently paid between £7 (daytime) and £10 (evening) per hour. Unlike informal carers, there is a recognition that working in the evenings should involve a higher hourly rate. The rule is that direct payment cannot be paid to anyone living in the same house as the person they work for. Mmmm. Well we wouldn’t want to acknowledge the work informal carers do, would we? Direct payments also involve a lot of bureaucracy, recruiting staff, form filling in, tax, national insurance, and so on.  Employing people involves time, interaction and a blurring of public and private boundaries in the home.

As I work full time, I don’t get carer’s allowance. There is no acknowledgement of the work I/we do, and will continue to do, looking after LB. There is no recognition that, unlike most parents of 17 year old children, one of us still has to be at home every day, ready to let LB in or collect him from after school club. This will continue for the next two years until he leaves school. And then what? He will, if lucky, be occupied two days a week at college for a year. No doubt starting around 9.30am, finished by 3pm with extensive holidays thrown in. He can’t be left home alone, so there are serious implications for maintaining full time employment.

I’m not overly optimistic about the paid carer situation. LB’s recent 12 week stint with a ‘peer buddy’, organised by a local care agency, was filled by a 50 year old man. At this point in time, I refuse to even think about a day centre. Years ago, LB used to say that he’d been to day care with Mr Galpin. It turned out that the social services transport he had at the time (the ill bus), collected a very elderly man after LB and they took him to the day centre before taking LB on to school. The thought of a 19/20 year old young man hanging out in that environment is a beyond dread kind of thought. It ain’t gonna happen.

So what are we left with? Fuck all really. Patchy bits of uncertainty and an unacknowledged expectation that parents will do a hell of a lot of work to make do and mend, on a daily basis. As for what LB will do with his life? That clearly is not an important feature of policy or practice.

Checking the football scores

Posted on by
Reply

“….pushed me off the computer. He doesn’t get enough exercise. No he doesn’t. He’s not healthy. He goes for me all the time. And for me it’s horrible. It’s very, very hard for me…”
“Eh, what you talking about LB?”
“Simon, Mum. He got annoyed with me Mum. He pushed me off the computer Mum.”
“Aww. That’s not very nice. What happened? Did he get told off?”
“Yes Mum. He got put in time out Mum.”
“That’s OK then…”
“Because he wants to go on it all the time Mum. All the time, checking the football scores Mum. The football scores Mum. I can’t let him do that, can I Mum?”
“Mmm… Well you could take it in turns to use the computer.”
“He pushed me off it Mum.”
“Did it hurt?”
“Maaaaay… beeee…. it hurt Mum. AND HE GETS ON MY NERVES! I might get my legal team if he hurts me Mum.”
“I thought he’d left school a while ago?”
“He has Mum. He’s at college now Mum.”
“So when did all this happen?”
“Dunno Mum.”

Jaaar-depidoo

Posted on by
Reply

French Week for old Laughing Boy this week. He made, and apparently proudly showed off to the rest of the school today, a mosaic of Gerard Depardieu. “Whoa, that’s random…” I thought to myself, when I first heard about it on Tuesday. “Gerard Depardieu????” (Or as LB’s pronunciation is pretty poor at the moment; “Jaaar-depidoo”).

“Why Gerard Depardieu?” I asked this evening, puzzled.
“Dunno Mum.”
“What other famous people could you have done?”
“Louis XI, Napoleon Bonaparte, Marie Antoinette…”
“So why Gerard Depardieu? Have you seen him on a film?”
“Yes, Mum.”
“What film was that?”
“102 Dalmations, Mum.”

And there it was. The answer. It ain’t random at all. LB loved the Dalmation films as a pup. He watched them over and over again. I can remember distracting him from a potentially massive meltdown one French holiday, by pointing out that Cruella was probably in the local prison and might hear him.  Laughter defeated the distress on that occasion. The DeVil years. How could I forget?

But he didn’t. So remarkable really. The certainty and infallibility of his memory.

Fanbloodytastique, as they say in France.

Meltdowns

Posted on by
3

I’ve been thinking about meltdowns for a few reasons in the last week or so.

  1. A PhD student, @lizith, tweeted me asking if I knew of other words for meltdowns. Her supervisor thought it was a colloquial expression and she should use a different word in her thesis.
  2. A colleague asked if I thought the Louis Theroux ‘Extreme Love‘ documentary was a reasonable portrayal of the more extreme end of the autism spectrum (in particular, the part where the mother flips the son onto the floor and restrains him using her body).
  3. LB is about to go on school trip again that involves a day trip to France.

I replied to @lizith saying that I thought ‘meltdown’ was a very widely used and understood term by parents of autistic kids. I don’t think I used it myself before I interviewed parents for a project, but their consistent use of it made perfect sense to me. I asked one mother to describe what she meant by it. She replied;

Sometimes you can see the gradual build up, you can see if he has had a particularly bad day because he will sulk and he will be moody and you know that sort of come seven eight o’clock at night you can really be in for it. So then it is trying to distract him and sometimes that works and sometimes it doesn’t. And then he can go up to his bedroom and refuse to go to bed, start throwing things, jumping on his bed, sort of banging on the ceiling. Its – it is like a monster exploding. And it is very unpleasant and twelve months ago he did get very physically violent where sometimes we did have to physically to restrain him and use time out and we did at our previous house sometimes have to lock him in his room and that was on recommendations from one of the specialists at the [hospital]. We didn’t like doing it but there were times when we had to do it for everybody’s safety, but fingers crossed we haven’t had to do that for a while now.

So this extract answers 2. Yes. Parents do have to restrain their children sometimes. And it’s something that isn’t really discussed much or widely known about, which is one of the reasons I liked the Louis Theroux documentary. There is such a complex layering of guilt, despair, isolation and sadness involved in having to physically restrain your child. It seems counter-intuitive to parenting. While the rationale for doing it is largely to protect your child from harm, it’s also very upsetting to be attacked by your child. Intentionally or otherwise.

We had years of meltdowns with LB. I’ve discussed some of them before on this blog. In supermarkets, reversing the car, at home. It was never pretty and occasionally physically painful. It’s also hugely distressing and unsettling for siblings to experience. The extract above captures the unpredictability and helplessness that parents can experience once their child/children tip over into such distress. I can remember psychologists and other professionals suggesting I video a meltdown so they could actually get an idea of what I was describing. (They never offered a scrap of useful support). The thought of videoing his distress was as upsetting as experiencing it firsthand. Professionals should really have a better understanding of meltdowns, and how children, and their parents, experience them.

So to 3. LB has learnt to manage his distress so much more effectively over the years. He can cope with a lot of the things that caused meltdowns when he was younger. He’s done a lot of the learning and groundwork himself really, bless him.  Finding his way and negotiating a lot of the stuff that’s thrown at him. His school environment has helped him enormously, and the teachers/TAs’ consistent, affectionate engagement with him. Occasionally though, something unpredictable happens and ‘meltdown’ doesn’t quite capture the horror of what happens in the, for him, adult-like version of it. Like when he was told to take off his shoes by customs officers on his day trip to France last year and he thought they were going to steal them.

I’m glad I wasn’t there on that occasion.

I’d still welcome any sensible advice or suggestions by professionals but I won’t  hold my breath.

French Onion Soup

Posted on by
1

“Hey LB, how was cookery today?”
“Good Mum.”
“What did you cook?”
“French onion soup Mum.”
“Wow! How did you make that?”
“With onions Mum.”
“Ok, onions. What else?”
“Just onions Mum.”
“What else? There must have been some other ingredients.”
“No Mum.Just onions.”
“So you got the onions. Then what did you do?”
“Made soup Mum.”
“No, you’ve missed out something. What else did you do?”
“Ate it Mum.”

Saturday morning

Posted on by
2

“Morning LB! How you doing?”
“Good Mum. Very good, Mum.”
“Cool. What did you do last night when I was out?”
“Went to bed Mum. I was tired Mum. I was sooo knackered Mum.”
“Wow! What time was that?”
“9.30 Mum.”
“Did you sleep OK?”
“Yes Mum. After all the girls left.”
“The girls, eh? That’s good. What do you want to do today?”
“Bit of youtube Mum. Bit of DJing.”
“What would you have done before youtube was invented I wonder…”
“Why Mum?”
“Well youtube’s only been around for about five years.”
“Dunno Mum. Be sociable Mum. Talk to people Mum.”
“What sort of people?”
“You Mum. Is Stan fat Mum?”

Suing the dishwasher

Posted on by
1

“Er Mum! Can you come here? LB won’t help do the dishwasher. He says he’s going to sue it.”
“I.AM.NOT.DOING.THE.DISHWASHER. I HATE DOING THE DISHWASHER. I AM CALLING MY LAWYER. I’M CALLING MY LAWYER RIGHT NOW!!”
“Get on with it, LB. Stop behaving like this.”
“Mum, I DONT want to do it, Mum. I NEED my downtime. I HATE doing the dishwasher. I’m not doing it ANYMORE!”
“You’ve got to do it. Don’t be silly.”
“Why, Mum? Why do I have to do it, Mum?”
“Because it’s your job. You and Tom empty the dishwasher. It’s good for you to help out. ”
“Why is it good for me, Mum?”
“Because it’s good to do jobs. And help out in the house.”
“I disagree Mum.”
“Eh?! Wha?”
“I disagree Mum. I need my downtime, Mum.”
“Oh. Really? Well what about if I decide I need downtime and stop working?”
“You get made redundant Mum.”
“And what do we live on then? If I haven’t got a job?”
“Benefits, Mum.”

Clients. And the learning disability fug

Posted on by
5

Some people may think I’m disproportionately enraged by what I’m about to recount. They may raise their eyes to the ceiling and think ‘What a bligey old fuss about nothing. Get over yourself lady’.* Well sorry, but I think they are wrong. It is important. And the mundane context makes it all the more important because of what it reveals.

So. I went to collect LB from his after school club this evening. This is now run by the Guidepost Trust, a registered charity that supports a range of people. On their website they state;

In all our projects and services we start from the view point that every person is special and deserving of dignity and choice and this ethos runs through the Trust.

Now, I don’t have a particular beef with the Guidepost Trust at all. I don’t think (or I don’t know if) they are any better or any worse than any of the numerous charities that provide similar services. They all spout the same sort of stuff, about person centred planning, choice, autonomy, and so on. They all have the same sort of websites, leaflets and so on. It all becomes a bit interchangeable really.

But anyway, back to today. I rang through on the internal phone for someone to bring LB out. (Yep, you don’t get to go into the after school club to collect them, they are escorted out, but that’s another story). While I waited in the foyer, I looked at the new display that had gone up on the noticeboard, with various bits of information. The after school club laminated timetable stated;

3pm: Clients are brought across from the primary school.

Clients? Clients??? From the primary school??? I can’t convey how wrong, and crushingly depressing it was standing there, waiting for LB to appear, looking at that sentence.

Why am I so upset, angry, depressed, furious and outraged by such a tiny sentence? Because it demonstrates the shallow, meaningless, ultimately pointless attitude social care services (and broader) have towards learning disabled children and adults. It highlights the way in which disabled children are effectively institutionalised from such an early age. There have, on paper, been huge shifts in policy and provision since the 1970’s and the move from residential to ‘community care’. The introduction of the concept of person centred care, direct payments, Valuing People, etc, etc, etc, etc, etc. But for the bulk of learning disabled people, life remains pretty much as constrained, managed, exploited, abused, and perceived as worthless, as it was before the likes of the late Jim Mansell, and others, started to instigate change.

Ten years ago, David Race, in the introduction to his book – Learning Disability: A Social Approach – wrote;

I am struck by how many of the themes covered by the thesis cited at the beginning of this chapter [his PhD thesis on the historical development of service provision from the 1970’s] still remain. Congregation, segregation and devaluation even in the midst of community life all remain. Public fear of the ‘otherness’ of learning disability, stoked up further by a public media that seems unable to take a broad view on any issue, has left people in probably as vulnerable a position as thirty years ago when the scene was dominated by institutions.

Well, that still stands as far as I can see. And with the introduction of the Welfare Reform Bill, things can only get worse. Underlined by structures and processes that are steeped in meaningless rhetoric with no authentic engagement with the lives of learning disabled people or children. That no one involved in producing the after school club timetable could actually see outside of the learning disability fug of prejudice, lack of awareness and a carelessness (possibly created by attendance on relentless ‘professional’ courses) to suggest that perhaps ‘clients’ should be replaced with children or kids speaks volumes to me.

*I’ve left swears out of this post, even though they are pinging around my head, because my old ma keeps telling me to send these posts on to our MP (and he would be a bit put off by the colourful language). 

The tiny woman with the chair

Posted on by
Reply

I’ve written before about our neighbourhood in terms of the colourful characters. And posted photos*. One person I haven’t mentioned before is the tiny woman with the chair. Now she, more than Chicken Bone man reading his extreme porn in the Cafe Bonjour, disrupts social space for me. Not in a negative way. But in a “Wow! This is so unusual!” way.

I first saw her about a year ago, when she was sitting on the other side of the road, on a small, white chair, facing a row of parked cars. Bundled up in a thick coat, she was sat back from the curb, leaning forward, unmoving, staring intently ahead. People walked past her, but she remained seemingly focused and undistracted. Was she doing a traffic survey? Or some other functional task? It didn’t seem like it. She just sat.

She was still there later, when I went to the shops.

“Eeek.. ” I wondered, “Should I say hello on my way past?” But she had such a stillness, it seemed intrusive. She was sitting so privately, publicly. A few weeks later, I saw her again, in a different street. Same chair, same stillness. I mentioned her to Richy.

“Oh yeah,” he said. “I saw her sitting on the edge of the roundabout on the ring road the other day. Funny.”

Until today, I’ve seen her a few times. Always sitting. In random places. Well random to me, that is. Today was different. Today she was walking up our road. Very slowly, with the chair in one hand. Heading somewhere.

So why am I writing about a tiny woman with a chair?

Because she is breaching social rules in a way that makes visible the rigidity (and possibly the tyranny) of those rules. She is doing something that is so unusual, and yet shouldn’t be. Bit like LB being an unlikely ethnographer of the normal, she is doing nothing remotely wrong. It’s public space, after all. And people sit on their own chairs in other public spaces, in parks or lay-by’s, queuing for the New Year sales or for the launch of new games or gadgets.

Carrying around a chair and hanging out in different parts of the neighbourhood is strangely remarkable. But I wonder why more people don’t do it?

* A mate of mine recently suggested I staged these photos…I didn’t.