“Mum. I’ve got a dodgy stomach Mum.”
“You’re going to school LB.”
“Dodgy stomach Mum.”
“School LB.”
“I don’t like you Mum.”
“Eh? How can you say that? I grew you.”
“No you didn’t Mum.”
“Where did you come from then.”
[points to the dishwasher] “There Mum.”
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.
“Hey LB, how was Trax?”
“Good Mum.”
“What did you do?”
“Looked around Mum.”
“Wow. What did you see?”
“Car workshops Mum.”
“Cool. What else?”
“Many many more Mum.”
“Many many more what?”
“Car workshops Mum.”
“Very cool. When are you going to start there?”
“Wednesday Mum. I’ll wear my blue onesie.”
“Maybe call it an overall there, eh LB?”
Got my first negative blog comment (on the ‘about’ page) this week. From someone from the masterclass of all places. Anyway, it raises the issue of should I be writing about LB on this blog? What right do I have to do that? And shouldn’t he be telling his own story?
Well the latter is easy to answer. Yes, of course he should. If he wants to.
The other questions are less straightforward. I had a long chat about this recently with a colleague who has a long term condition. She said she felt a bit irritated by her mum always telling her story over the years. And still.
Tricky.
I don’t think people have their own, exclusive, story. Disconnected from those around them. There are multiple stories that overlap with other stories. On this blog, I’m not telling LB’s ‘story’. I’m recounting the experience of being LB’s mum.
I think it’s important to share these experiences not least to raise awareness of the lack of support for learning disabled children/adults but also because LB’s ways of being and doing makes visible mainstream practices that are taken for granted and unquestioned (see The Unlikely Ethnographer).
It has also had (the unanticipated) consequence of providing other people with a way of chatting to him and about him, and asking after him or about him. It’s given him a space to be known. I kind of knew (but being immersed in the everyday chaos that comes with a less straightforward life didn’t really do anything about) how difficult it is for people without experience of difference to engage with it. This meant that LB was often not a part of my interactions with the wider world. Now he is. In an ordinary way. As a funny dude who loves lorries.
Chewy stuff.
One of my birthday presents was a bell so I could ring for ‘service’ (wine, newspaper, clean towel, etc) when in the bath. I know. It’s a laugh riot in our gaff. On Sunday, LB was about to get in the bath when I realised the full potential of the new, shiny bell. LB loves baths but has quite a way to go to mastering effective tap control (heat and quantity). We run it for him and leave him to soak. Trouble is, it’s tricky to decipher general chatter from a help request (or outright alarm). This means he doesn’t get much privacy. Dinging the bell could resolve this.
“So LB, if you want anything ding the bell. Like this…” DING!
“Yes Mum.”
“Ok? If the water gets too cold or you need anything, just ding.”
“Yes Mum.”
“Ok, I’m going in the other room.”
“Yes Mum.”
DING!
“Wow. That was quick. What do you want?”
“I love Irish lorries Mum.”
LB’s been off school a week now. Unmanageable distress associated with school, which manifests itself in violent outburst (towards himself and others), has led to a kind of informal home arrest. Home where he is largely a chill pill. Home which ain’t ideal when we both have full time jobs.
School are going to try to sort out some way of him returning part time. The plan was for him to stay at school until July 2014. A ‘mental health’ referral has been made with no one involved optimistic that this will happen within 4-6 weeks. The care manager (who had discharged him after success at panel finger nail blackboard towards the end of last year) called today to sort out some sort of interim ‘care’ for him.
“Well he can go to respite pretty much straightaway…”
“What do you mean by respite?”
“He can go to Saxon Way. Into respite. I can get the manager to call you.”
“Sorry, I don’t understand. What is it exactly?”
“Well it’s a building.”
“Eh?”
“It’s a building with a snooker table and other stuff to do. He can stay there or maybe the staff will take him out into the community. Or if you prefer, some staff can come to your home and look after LB there. The advantage is, it’s pretty much an instant solution.”
So, after apparently huge shifts in the organisation of social care in the UK, the development of aspirational thinking around person centred care, and having spent 16 years in education, LB is consigned to a building with a snooker table. At the first hurdle.
I don’t get it. What about his future? His life? His capacity to be meaningfully productive in some way? He’s 18 years old and should be looking forward to the start of his adult life, some type of employment and everything that comes with that. Not written off and stuck in a day centre waiting for a half arsed referral to fictional mental health support. Seriously?
I must be missing something.
Surely.
Dear woman in the restaurant,
We were the people you spent your meal staring at. Or was it glaring? I’m not sure. It was fixed and unwavering which ever it was. And it made the situation so much worse. I’m not going to apologise for LB’s behaviour. He was stressed from the start (getting stuck in the revolving doors on the way in probably didn’t help), but for the most part he managed to keep a lid on it. He muttered to himself a lot, and tensed his body regularly, but only a couple of times did he actually do anything that could have disturbed your meal. Two, possibly three, very brief shout-outs about his fear of Irish lorries being stolen.
As you were staring so hard, you may have noticed that the three of us, Rich, Tom and I, were all working hard to try to keep him calm. There was a lot of talk of the security arrangements at Irish lorry companies and attempts to distract him with a running commentary of the Oxford buses driving past the restaurant. A lot of remedial work, as Erving Goffman, would call it. To be honest, this work was largely try to stop LB experiencing such stress rather than concern about other diners.
I’ve sat in plenty of places and had to listen to other people’s conversations because they talked so loud, I’ve listened to people shouting on mobile phones, sat near parties of people being drunkenly cheerful and excessively noisy. These people don’t get stared at. These behaviours are tolerated.
I’m not sure what you were hoping to achieve with your staring. To let us know some social rules were being broken? To let us know that young people like LB are not welcome in public places? Or to demonstrate that your meal was ruined? The latter would be peculiar. You were sitting far enough away not to look at him, and, as I said, other than the quick shouts, he was pretty quiet.
It was my birthday lunch. I wanted LB to be there (obviously), and don’t think it is (or should be) a big ask for you to just get on with your meal and ignore the odd disruption. Anyway, we got the bill before we’d finished our main course. And left. Staring, or glaring, like that, can sometimes make a difficult situation unmanageable.
Maybe next time, you could just take a few seconds to try to imagine what it must be like to experience that distress, or have to try to manage it. It ain’t rocket science, it’s that thing known as empathy.
Yours,
Sara
So here’s the gig. LB is 18. Increasingly unhappy at school. Deteriorating in emotional well-being. The space for him to be happy seems to be steadily narrowing. Like those rooms on Tomb Raider with moving walls, or the ledge Batman stands on.
We work full time. Luckily with flexible employees/jobs that allow Rich to leave work at 1pm to collect LB from a residential school trip in Devon when it goes tits up, or one of us to be home at 3.15pm most of the week, with some help from family. This also means that we spend quite a lot of the weekend working.
We have a care manager. Or we did, briefly, until she organised the 2 hours of direct payments five days a week to cover after school ‘adult child care’ and discharged us indefinitely. ‘Successful at panel*’, she called it. Trouble is, ‘adult child care’ ain’t readily available. And two hours after school doesn’t solve the increasing problem LB has coping with school.
Things are not going well.
I met with a good friend this week who has a 25 year old daughter in a residential setting. She always amuses me with her refreshing, no nonsense, cut through bullshit, type approach to her and her daughter’s social care experiences (which have been up and down). This time she turned her focus onto LB. It was time to write ‘that letter’, she said, as we noshed on the early evening menu and glugged house white.
If we didn’t write ‘that letter’ to social services, saying we wanted LB to live independently when he finished school in summer 2014, he would get lost from the system. We needed to have ‘that letter’ on file. So it’s recorded. We didn’t want to be scrabbling around in crisis, in five years time, desperately trying to engage with social services and no space to be given any choice in his living arrangements.
This week I’m a respondent at a workshop on ‘Changing Models of Motherhood’. The session is about ‘non standard mothering’. I’m uncomfortable with that term for all sorts of reasons. I want to call it ‘different’, ‘hindered’, ‘frustrated’, ‘hampered’, ‘unsupported’ mothering. ‘Non standard’ implies a benign, though less valued, type mothering but one that is somehow still within the gift of the mother/child relationship.
LB’s current distress relates to external factors and is compounded (or created) by a lack of appropriate, timely, responsive rather than reactive support. I don’t want to write ‘that letter’. For me, it goes against what I consider to be ‘good mothering’, non standard or whatever. It seems harsh, punishing, unfair and I worry it will expel him to some, as yet unknown, space. A kind of containment. Experiences of social care so far have been pretty mediocre to downright crap. For example, the council funded sessions of peer buddying to take LB out and about, and the care agency sent a man in his fifties because there were no other staff available. I know that the rhetoric around choice and personalisation is hollow. There ain’t a meaningful choice.
So, writing ‘that letter’ fills me with dread. I know its got to be done. But I still don’t know why it does. It shouldn’t be this crap.
*And I still don’t know what ‘panel’ is.
“Mum?”
“Yep?”
“Can I have a bath Mum?”
“Yep. Course you can!”
“Mum?”
“Yep?”
“Can you find me some clean clothes to wear Mum?”
“Yep. Of course I can.”
“Thank you Mum.”
Unbelievable. In the best possible way.
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?”)
Then 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;
So 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.
mydaftlife 