The Unit. Day 63

You know that saying; that things can’t get worse? Well that’s turning out to be a load of old codswallop. After the whole CPA meeting surprise (see yesterday’s cheeky little number for details) and, as yet, no sniff of what the future might hold for LB (Don’t. Just don’t even mention support), I went to visit him yesterday evening. He was in bed, dozing. With a bitten swollen tongue. Signs of a seizure. Or size of an elephant it might well have been.

The bitten tongue had been noted and Bonjela on order. The seizure dimension overlooked. LB’s seizures have always worried the pants off me. Not least because it took about four ‘in your face’ tonic clonic epics before the docs would even entertain the idea that he might have epilepsy. We were tripping over that old ‘he’s got to learn to manage his stress/star charts anyone?’ chestnut (a.k.a. the learning disability trump card) for months.

The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe.  I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t.


Liminality, mothering and something?

Crap. Crap. Crappity-crap. Thoughts are pinging round my head that I want to write and ‘resilience’ keeps cropping up to capture them. Ggggrrrr.  I’m not convinced by ‘resilience’ in this context. I want a different word, one that feels more comfortable. But what???

Anyway, parking that for a moment, I had two days off this week. What a pile o’ shite they’ve been in some ways. Terrible weather, the weekly community team meeting (CTM) at LB’s unit which is (inevitably) a real party stopper, a few failed tasks and overdue domestic stuff. The cockroach remains in the freezer, way too cold and miserable to schlep up to the post office – me/the weather that is, not roachy. LB refused my offer of various outings preferring to have a long bath instead. [And no, I didn’t play the McDonald’s card again, because it can’t become about burgers all the time].

After piecemeal chores, and heating up leftover curry for me and Rosie, I went back to bed with my book and ipad to power through some Candy Crush levels. And have a kip. That was cool. We got to visit LB early evening and, with some persistence, caught his attention in a scrap metal yard discussion. With him smiling, it was ok to leave. (And get caught in rush hour traffic on the ring road home. In the pissing rain).

Anyway, this is a long ramble really, about my thoughts yesterday evening.  I got to thinking about the recent jaunt to Bristol with twitter buds Kate and Alexa, to visit a superb social enterprise set-up. This memory was one of those winding moments that can be unexpected.  It’s a funny one really. I avoid LB’s bedroom and feel sad when the odd bit of his clothing comes through our (chaotic) washing process. But I can watch previously lost home movies with real enjoyment. Then I notice an old ‘Pupil of the Week’ page (yep, the dude racked up quite a few over the years) pinned to the fridge, or chat to someone in the street, and that punch in the stomach is back. Together with the old rock throat combo.

Ironically, 57 days on, we’re in another liminal space.  Liminality was something Katherine RC and I wrote about a few years ago in relation to being (academic) mothers of disabled children, excluded from disability studies (for not being ‘disabled’). LB being contained is another version of this, in a different space.  We have no idea what is going to happen, how it’s going to happen and what we should do to help/make things better for LB (and us). There are no guidelines, no advice, no rulebooks.

The CTM focus is on the here and now; LB’s everyday life in the unit. The broader questions can’t be answered. I was recently flagged up as a problem in a meeting I missed; described as unable to move beyond seeing LB as a child. While this has since been ironed out as misunderstanding/miscommunication, it contributes to the experience of liminality.

My reflections here are twofold; I’ve been struck by our resilience adaptability? acceptance? ability to get on with stuff? as a family. We’re all mucking in and making do, getting through and looking out for LB. That’s fab. Seriously fab. I don’t know where these resources come from – if someone said 56 days ago, that LB would still be in the unit at this point, I think I’d have collapsed – but we’re muddling along.

My worry is that in the same way I’m only able, with hindsight, to view the course we took with LB as a pup, as unhelpful, we may similarly get blown off course here. We’re almost back in that ‘just diagnosed’ type space. Unable to make any sense of it and dependent on the views of health and social care professionals.  We have no idea what ‘the course’ is, or should be, particularly now LB’s tipped into an unthinkable place. And perhaps they don’t either.

I also wonder if being ‘resilient’ may muddy things.  We’re so busy muddling along, dealing with direct payment nonsense, negotiating visitations to LB on a daily basis, schmoozing, ranting, questioning, trying to get some sleep, and hold down jobs, we’re unable to see things clearly. We’re simply following a well trodden path which I suspect should be changed.

The Unit. Day 30

Rich visited LB yesterday. Apparently LB was withdrawn, not very communicative and didn’t want me to visit. He said I should ring the unit today. I rang this evening on the bus home from work. Blimey. He wanted me to visit.

I jumped in the car as soon as I got home and whizzled round there. He was OK. Been in his room all day (after a good day at Trax on yesterday), quiet and a bit subdued. The nurse came in with a plastic kidney shaped dish with a cup of water and pot of pills. Funny because you forget it’s a hospital really. LB carefully drank the full cup of water, put the cup back on the tray then picked up the pills to swallow. Love him.

So, as far as we know, he’s a voluntary patient. He’s going to the farm tomorrow with Sue and his class. And hopefully getting back to the chill pill he was on Monday morning. That’s pretty good really.

Keeping mum, irony and shifting capacity

It’s a tricky one, this capacity business and parenting. I deeply believe that capacity should be presumed and agree (and welcome) that “unwise or eccentric decisions don’t themselves prove lack of capacity”. I also worry that this has led to instances in which the wellbeing of learning disabled adults is compromised because “capacity” is so difficult to demonstrate in practice.

There was a roundtable discussion about Winterbourne yesterday with a range of learning disabled people (I assume/hope there were learning disabled people present), families, community groups, government ministers, policy makers and service providers. This was live tweeted by various people (see #winterbourne to follow the discussion). Families cropped up early in the discussion and there seemed to be a call to involve families rather than treat them as a problem.

winterbourneImportant, much needed discussion, but I was struck by the irony of going to visit LB with the threat of him deciding he no longer wants to see me, hanging over my head. It is quite a blast to go from being the full time carers, with very, very little support over 18 years to suddenly being removed from the equation. We have to ask for any snippet of information. The outcomes of a team meeting on Monday remain unknown to us. Again, ironically, in an attempt to not appear a batty, desperately protective mother, I didn’t ask to attend this first meeting. When the default position is the young person has capacity (without capacity being tested), the positioning of family members within the structure of the mental health service is a bit anomalous. And anomalies are odd and out of place.

Fran came round yesterday afternoon, armed with useful information from a brilliant workshop she’d been to on capacity. It was run by Luke Clements, who is an expert in this area. “He was absolutely brilliant”, she said. “Ah, him? I updated the literature review for his disabled children and the law book a few years ago. My supervisor was the co-author.” Is that ironic? I’m not sure. My research at that time was about mothers and going out in public with dudes like LB. The real irony is that LB can’t go out anymore. And my role as a mother is now contested.

Whose story is it anyway?

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.


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.


‘That letter’ and non-standard mothering

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.


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.