Tag Archives: life

Memory sticks

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Slow, slow countdown to July 4. Year seven.

Back in the day I wrote raw, fuck you accounts of grief. Real time, incoherent pain accounting. Trying to translate the unimaginable, unspeakable, incomprehensible into words. Into some sort of coherence.

Writing grief.

Seven years on it feels more like shades of a shipping forecast.

Lighter impact. in terms of dominating everyday life, tasks, being and doing.

Timing. winding and wounding moments, longer spaces between.

Emotional state. tears. water. drowning. sadness.

June 18 and my eyes (heart) have started the random, now familiar, tear filling gig. Working from home/Zoom meetings offer unexpectedly novel passing options. The immediacy of being able to delay joining meetings for a few moments. Of not turning on the camera.

longer spaces between.

I’ve taken to decanting the content of old memory sticks onto google drive. Memory sticks. Tumbling into particular date space clusters: presentations, photos and files. Recalling a conference or ten with seventeen hundred versions of a mediocre paper and flight details. Interspersed with detritus from the last seven years. Screen grabs, documents, reports and more, laying bare the outlandish and unspeakable. Snippets of horror and the inhumane.

Then every so often a photo pauses time.

Thinking photography

Post-death, photos demand forensic scrutiny. The whole shebang followed by a meticulous poring over the minutiae. The cast, the setting, the props, the clothes. The weather, the light. Faces, emotions, action and more. My eyes repeatedly drawn back to Connor. Sit kneeling in that funky way he did. Slightly disconnected from engaging with whatever is capturing the attention of his classmates off camera.

I sit and imagine him going back to his class, eventually getting his book bag, a mini bus journey taking a good 40-50 minutes to travel the 6 miles home and late afternoon/evening unfolding in familiar, unseen, unremarkable ways.

When you have a finite time with your child, each piece of stuff – photo, anecdote, a piece of school work, school diary entry, painting – becomes something so much more than it ever was in the moment. The dustings of unfolding life tend to be lost in the complacency of an imagined forever.

I’ll take shipping forecast grief. And a focus on the good times. Beautiful, beautiful, cheeky chappy.

Choice and enthusiasm

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Beginning to find our way around this choice issue with LB at last. Or just picking up the techniques we used for years before ‘choices’ were relayed through and monitored by a third person.  Yesterday I rang the unit and asked if LB wanted to go out somewhere today. Yes. Good.

This morning, after much thought and discussion with Rich about where to take him (we don’t want to go too far down the route of endless treats and no sniff of dishwasher-land), we agreed the bus museum would be a good plan. A ‘bus museum plus’ plan. A pleasure and pain model.

I picked him up from the unit at 12.

“Where do you want to go then LB?”
“Bus museum.”
“Ok. We’ll go to the bus museum. And then we’ll go to Sainsbury’s after to do the shopping.”
“Sainsbury’s after?”
“Yep. Bus museum followed by Sainsbury’s shopping.” End of.

Nearly four hours of watching mechanics and enthusiasts in action, with a vintage bus ride thrown in. And then a packed Sainsbury’s at closing time. All done joyously.

Don’t you just love buses?

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Liminality, mothering and something?

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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.

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

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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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The outing

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Today was a funny day. I went to Bristol to meet two women I’d ‘met’ through Twitter, Alexa and Kate, to visit a social enterprise scheme called Props.  It was hilarious meeting people through Twitter. Eh, who? What? Where?

I chuckled as I walked through the ticket barrier at Bristol Temple Meads, wondering whether I’d actually meet them. Especially as I had in mind we were meeting at Bristol Parkway which is so much smaller.  But there they were. Freezing and big smiles. Kind of recognisable through avatars and the odd tweeted photo.

By the time we were sort of (but not really) lost looking for the Props base somewhere in Bristol, I felt I’d known them both for years. We laughed. And connected tweet snippets from past months with shortcuts forged by the experience of having less than straightforward kids. Loveliness.

But the outing was about Props. And Dave and his crew delivered. Big time. Basically it’s a space for disabled young people to learn, work and flourish. As part of the community with a strong commercial focus. We hung out with Matthew and Jethro. Matthew was hugely impressive. He worked his socks off in an understated way. Making drinks, tidying up, keeping an eye on Jethro’s work, and demonstrating a sophisticated engagement with the tasks involved in print room work. Jethro added the comedic dimension to the visit, with hilarious one-liners and an easy engagement with everyone that I would love a dose of. They both shone.

And made us some great t-shirts.

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Wowsers, I hear you say. Social services must be chucking money at this organisation.

Of course they ain’t.

The interview

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In celebration of LB’s first ever job interview, at very short notice. A volunteer post at Helen and Douglas House, two hours a week to start with. He handled the interview the way he largely handles life; quietly chattering to himself and occasionally breaking off, when gently encouraged [nagged], to answer. The volunteer co-ordinator who interviewed him  was exceptional. As were the receptionist and the estate manager who will be in charge of him. It was one of those very rare times, outside of family, school and some specialist support, that everyday rules are adjusted (or ditched) to enable a different engagement. One in which unusual behaviours aren’t ‘wrong’. Just different.

And LB? He rocked it.

The maybe pile

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11.06pm. Wednesday night.

“Mum? Mum?!!! Where’s my Hornby book Mum?!!!”
“Er, which book?”
“The Hornby book Mum. About trains Mum.”
“Mmm. Dunno. Do you need it now? It’s getting late.”
“Yes, Mum. Where is it Mum?”
“I dunno. I’ll come and have a look in your room.”
“Yes Mum.”
… “Mmm. Can’t see it. How about Horrible Histories?”
“No Mum.”
“Victorian London?”
“No Mum.”
“Eddie Stobart: the Story?”
“Maybe Mum.”
“Ok. I’ll start a maybe pile. How about Cars: The Cowley Story?”
“Maybe Mum.”
“Alex Rider graphic novel?”
“Maybe not Mum.”
“Bus magazine?”
“No Mum.”
“The Oxford Bus Museum booklet?”
“Maybe Mum.”
[…..]
“Well there’s quite a few books in the maybe pile now. Which one do you want to read?”
“The Hornby book Mum.”

Boundaries

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It’s a tough gig bringing up a disabled child. Yep. It shouldn’t be, I know. Appropriate, timely and sufficient support would make a huge difference. And a seismic shift in public attitudes. Of course these things overlap and I ain’t optimistic for all sorts of reasons that they will ever happen. But if they did, there would still be trickiness.

Take this morning. We’re in the midst of pretty dodgy times with LB and he’s booked into Parasol for four days for half term activities. A charity organising and supporting young disabled people’s access to, er, fun. Yep, it’s as simple as that.

But…

“IDON’TWANTOGOTOPARASOLMUM! I’MEIGHTEENMUM! YOUCAN’TMAKEMEGO.I’MGOINGBACKTOBEDMUM!”

Like his two younger brothers who will probably sleep/doze till lunchtime. Sigh.

All sorts of thoughts and considerations….

You’re kind of right…
We don’t want another major kick off….
You can’t watch youtube all day….
We’re both working today….

“You’ve got to go.” I said. Some ranting and raging. But at a low level. And he’s off to the Kassam Stadium for a day of bowling and cinema.

Now Parasol is an enigma to me. They organise a range of activities in and around Oxford. You drop your child off at stated destinations; outside the Playhouse in the town centre, or in the ice rink car park. Or at a local community hall. Believe me. This is seriously weird to a parent subjected to years of constrained, heavily policed and overly organised out of school child care for the ‘special needs child’.

Eh? Leaving LB at a community centre with the doors wide open, kids in the car park, and helpers running around having a laugh in squirrel onesies? Hello? These kids are runners, you know?! They’ve got no sense of stranger danger or road safety???? Hey, the door is open!!! Anything could happen. Anything! You hear me???

The organisation of Parasol appears chaotic and random.

But it isn’t. It’s run by and staffed by exceptional people who enjoy the kids, understand difference and get out there and get on with it. With impeccable leadership. And, in doing so, they allow some freedom, independence and fun for this group of young people.

Anyone who takes LB, and ten or more other young dudes, to watch Les Miserables (at an ‘ordinary’ showing) is cracking on in the right direction in my book. We all just need need to catch up with them.