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.

Home movies and translation

As a prelude to two days annual leave, I started to ‘sort out’ stuff yesterday afternoon. A painful experience. Partly because it highlighted my (our?) hoarding tendencies groan, but also because it made visible the way in which our lives were disrupted/interrupted/put on hold a few months ago. This interruption – still no effective words for this – was apparent through opened but discarded post and other overlooked detritus.

Shudder.

Anyway, one positive to the sort out was finding home movies that had been missing for several years. They’d fallen down the side of the desk where I’m sitting typing this (the darker reaches of sides and behinds that are only explored when annual leave beckons).

I took time out of sorting to graze this footage. Sob. Where.did.the.years.go???

Various things jumped out, including a trim version of Rich *cough cough* and the total cuteness of the kids. And LB’s quirkiness and humour shines. In one scene, he’s jumping up and down with excitement during an Easter egg hunt, completely missing any eggs even when gently guided towards them repeatedly by Rich. In another, he’s sitting eating his tea with Rosie and Tom, wearing a cycle helmet, his ELC police tunic and a pair of googles. Hilarious. Why was this version of him absent from every ‘official’ report/discussion over the years?  Looking back, we were completely derailed by a system which delivered so little. I can remember LB and Rosie being filmed by a paediatrician at an assessment centre as tots. She wanted to capture his “non-interaction” and “own world” stuff on film for teaching. Makes me cringe now but in the early days of crash landing into ‘special needs-land’, you invest so much hope in these professionals making your child ‘better’, you do pretty much anything they suggest/ask. Hunter-gatherer diet….? Er, let’s not go there.

Framing ‘learning disability/autism’ as a negative, needing treatment, repair or containment [yes, I know. The irony] rather than engaging with LB (and other dudes like him) as individuals, means that support is pretty much useless. And as I keep saying, support that don’t support, ain’t support.

So what advice would I give my fifteen year ago self?

The dude’s different, and he’s always gonna be. Get over it and get on with enjoying what he brings to the party. Oh, and don’t get too hung up on all those meetings with health and social care professionals. They ain’t as important as you think. Really.

‘Busy behaviour’ in the ‘Land of the Golden M’; The sequel

ryan5-195Bit of groundhog day this weekend. My PhD (started about 10 years ago now) focused on going out in public places with learning disabled children and McDonald’s featured consistently in the interviews with mothers. Or the ‘Land of the Golden M’ (as it was then) as one mum called it.

Children’s ‘busy behaviour’ was tolerated, the food arrived quickly, it was always identical (very important to a lot of kids who were on the autism spectrum) and sprinkled with that magic dust that makes it pretty taste-tastic for kids.

Regular readers will know that now LB is offered choices in a fairly blunt way, it can be difficult to encourage him to do things. Last weekend he said no to going out with us, so this weekend, we decided to fall back on the old favourite and offered breakfast at Mooky D’s. An instant “yes”.

Wow. Changes afoot in the Oxford branch; self service machines and a new queuing system. Even better for the less than patient. It was fast and we had a laugh.

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LB was in great spirits and, once he’d noshed every bit of his food and drunk his milkshake, chatted about scrapyards and tyre disposal. Perfect.
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Wordgames and DoLs

I got a call yesterday evening, after visiting LB. Awkward, awkward, awkward. The ensuing discussion erased any memory of the guy’s name or credentials but he’d been in to assess LB that afternoon to decide whether he was being deprived of his liberty or restricted in his movements.

Eh???

He was surprised and shocked we knew nothing of this visit especially as he knew we were going to visit LB shortly after his visit.

Eh???

His assessment involved conversations with LB and two staff members, and his conclusion was;

  • LB is restricted but not deprived of his liberty because he isn’t trying to abscond when out of the unit, is offered regular options to leave the unit on outings (which he regularly turns down) and hasn’t said he wants to leave. Although he did tell the guy he didn’t want to be there. Conclusion: apart from the locked door, there is nothing stopping him leaving.  

 

He wanted to know what I thought about this.

Wordgames. That’s what I thought about it. Wordgames, spin and nonsense.

Choice, Bond and bus tickets

Rang the Unit this morning to see if LB wanted to come to town with us and have some nosh out. He’d been to the farm on Friday and had been quite chilled over the weekend.

“Maybe. Maybe not,” was the answer. This means no. I rang back a bit later to see if he wanted us to get him anything.

“No, thank you,” he said to the staff member relaying the question.

“Can you ask him if he wants a t-shirt or a dvd, or anything?”

The answer was “DVD please.”

Rich, Tom and I went into town. Tom started chatting about when we’d gone to watch Skyfall with LB. I’d forgotten, but Tom remembered how LB had sat patiently in the dark waiting for the bright daylight fight scenes so he could read his bus ticket. Hilarious. Kind of.

There’s something here about choice and constraint. But also about difference and tensions around making sense of our lives and the social world we live in. I still think of LB as an unlikely ethnographer, but that doesn’t help us understand how he makes sense of his life. This remains a mystery really.

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The Unit. Day 45

From yesterday. Bit-post. Unfinished through lack of words:

LB attacked a staff member at dinner time tonight. Unexpectedly. For no apparent reason. After some careful but excessive sauce action (tomato and brown) on his plate. This lead to restraint, more restraint and medication. The situation was explained to me carefully in detail when I turned up an hour or so later. 

“Er, can you claim for your shirt?” I asked his key nurse, inanely, after my other questions were answered (but left unanswered because there aren’t answers). 

There are also no words really to make any sense of this, without falling back on jargon and social care speak. 

I saw LB briefly after the debrief (and ripped shirt). He was in his room. I was armed with an alarm. He didn’t say much, just muttered really. I rang later that evening to see how he was, and the support worker (love her) went upstairs to check on him.

“LB, your mum’s on the phone. She just wants to know that you’re ok.”
“Yes.”
“Can I get you a drink or anything?”
“Yes.”
“What would you like?”
“Blackcurrant.”

 

The Unit. Day 42

The excitement of the trip to the bus museum had worn off by the time we visited yesterday evening. LB was in his room, subdued, having chosen not to go to the farm (again).

Choice eh? Very, very important that learning disabled people can make these choices, we’re told. Unlike many other people, who have no choices in their everyday lives. Yeah, it’s so much better that LB is able to choose to laze about in his bedroom all day (again), than get a good day’s exercise, sunshine, fresh air, hang out with different people and be productive. My arse.

Of course loads of people would choose the room-laze option over working. But they wouldn’t be given that choice on a daily basis. They’d have to (if they could) do something productive. And more than likely want to after a few days.

I’m getting pretty naffed off with this choice charade as you can probably tell.

Anyway. Back to yesterday evening.  LB’s bedroom was snug and comfy, with the evening sun shining in. He sat leafing through his Yellow Pages, with bus magazines spread across the floor. Jug of squash on the desk. It was calm and peaceful.

“Do you like it here, LB?” Asked Rich.

“Not really, no”, he replied, without looking up.

The Unit. Day 40

Day 40: The day we took LB to the bus museum

Got a call from the Unit yesterday asking if we wanted to take LB to the nearby bus museum that he loves. TAKE HIM?? Pick him up and take him ourselves?? That’s a ‘Y.E.S. We’d love to‘ kind of answer. It wasn’t open yesterday, and he declined our offer to take him somewhere else instead, but today Rich, Tom, Owen and I scooted round, picked him up and headed for the museum. It was great. The museum’s very quirky with a lot of very shiny old buses. We sat in various buses and coaches, chatting, remembering visits to museums and holidays from years ago. The outing was rounded off with sausage rolls and ice-creams in the cafe. Fun and fab.

“By the way, Margaret Thatcher died”, said Tom, as we pulled up back at the Unit.

“Why?” asked LB.

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The Unit. Day 37

Day 37: The day that Tom and LB get to meet in the local Burger King for tea.

Tom and I got there first, after a speedy dive into Tesco. Tom wanted to get LB a DVD or magazine because it was their first meeting since this all kicked off. He chose him some undercover cop comedy film I’d never heard of. And I grabbed a big box of cornflakes on special offer as we’d run out of cereal.

We sat at a table by the window, scanning the car park, half watching the families coming in and out. Chatting about the Suarez 10 match ban. It was odd. Waiting for LB to turn up. We had a bit of a chuckle thinking the staff would wonder what we were doing in a fast food restaurant, not ordering anything.

It was also weird wondering what it must look like to anyone there (who noticed) seeing a car pull up in the car park, LB get out and join us, and the driver going back to wait in the car.  Like an inside out version of prisoner visiting hours. Or some court supervised visitation. Being in a familiar setting, but in a context in which the parameters are radically altered, is very strange. At one level we were hanging out like we’ve done a million times before. At another, this was like a state supervised meeting.

It was also fab.

Tom and LB went to sit down while I ordered a load of nosh. Lovely to see them sitting down together, hanging out. Unconfined. We ate, they had puds and chatted. About Hot Fuzz, Tom’s mate who said to say ‘hello’ to LB and local police activity in the neighbourhood on Friday evening.  LB was delighted with the DVD. He’d also been to the bus museum again today, which he loves.

When everything was eaten and we’d chucked the rubbish away, I asked LB if he wanted to go back to the car or hang out a bit longer.

“Hang out a bit longer, Mum,” he said.

So we did. He carefully removed the cellophane cover from the DVD, peeled off the stickers advertising different things, passed the rubbish to Tom and read the back of the box.

Then we walked him back to his waiting car.

A good outing.

‘Incarceration’ on a sunny day

I’ve been trying (and failing) to make some sense of this experience. It’s too enormous. And on a sunny day like today, ‘incarceration’ is all the more painful. Of course LB isn’t ‘incarcerated’, he’s an informal patient who, in theory, can move around as he chooses. In practice, this isn’t really the case. (Although spending the day in his room watching Eddie Stobart DVDs is probably something he’d choose to do).

I was kind of delighted to read on twitter, this morning, that one of the priorities of the Care Quality Commission (CQC) is to strengthen its focus on mental health, mental capacity and learning disability. That delight was almost instantly quashed by the ‘Yeah. What. Effer’ demons. The past 16 or so years since LB was diagnosed with ________________ [fill in the current label/s depending on the year/decade/century/version of the DSM (Diagnostic and Statistical Manual of Mental Disorders). Use an extra page if necessary], nothing has really changed. The kind of things we (a group of parents of young children) tried to change in health and social care all those years ago, are being fought by a new group of parents of young children. Having just emailed LB’s care manager this evening to ask her to stop any more direct payments (DP) and take back what’s been paid into the DP bank account (above the surplus that has already been demanded back by the DP team), in order to avoid paying a fair charge for no support at all, makes me wonder if things have almost got worse in some ways.

It’s a tricky one really. The extreme situation we’ve experienced over the past few months has pushed us into some horrible spaces. The almost daily developments – good, bad and indifferent – in the various areas that revolve around being the mother of a learning disabled young man informally living at a mental health unit, are time consuming, sometimes baffling and emotional exhausting.

I’ve read, researched, written about and lived the experience of mothering a learning disabled child. This adult stuff is a whole new ballgame. One we’ve barely had a chance to absorb and think about clearly. In the same way there was never any (useful) guidance, support or advice about having a disabled child, there has been no useful guidance, support or advice about having a learning disabled adult son with mental health issues (I don’t like this phrase but dunno what’s an acceptable alternative).

This has been hard. But hey ho. The sun was shining today. There’s good stuff going on. Charlie’s Angels are fighting the fight. Rich and I are both blown away by the support and warm wishes consistently offered by family, friends, neighbours, colleagues and all sorts of other people. Some guy raved about my grey hair at the bus stop this evening. And Chunky Stan’s eye pressure in his remaining eye is pretty much back to normal. 

And we’ve arranged to meet LB in Burger King tomorrow evening with Tom. They’ve not seen each other for five weeks. Funny times.