Music: The Food Of…?

Facebook rightly has detractors, but without it, this little gem would have long since been lost. Today’s Facebook memory, from about a decade ago:

G wanted to listen to my iPod in the car today; E was helping find the track that was wanted.

E: “So, what do you want to listen to?”

G: “Shepherd’s Pie.”

What can I say? Maybe, “Don McLean, eat your heart out”?

https://t.co/A8800EcEgD

Adulting.

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So cheesed off. It’s the longest day of the year and I think I can say without fear of contradiction that the gold-to-tailings ratio of events chez Chrome in the first six months of 2019 has been notably poor.

Between Christmas and Easter, Grenouille had two bouts of gastro problems that put every other system in G’s body out of kilter, and resulted in a fortnight of bed rest each time.  Bed rest for G means next to no rest for me; as the only adult in the house, Monday to Friday, I get to do 24-hour lone-pilot duty.  For a whole month.  Yippee.

The run-up to the Brexit-that-didn’t in February and March was hideous. Along with hundreds of thousands of other Britons, G’s continued existence relies on European-manufactured medicines whose supply could not be 100% guaranteed in the event of a no-withdrawal-agreement crash-out.  One of the most discouraging things about it, was Brexiters among the people I’ve thought of for decades as friends, telling me to stop drama-queening and whinging on, it would all be ‘fine’.  It didn’t seem to matter to them that I had done the research on current stocks, usage and likely blocks to replenishment, and was genuinely frightened for G’s life if there were to be chaos at customs and gaps on pharmacy shelves. 

In the last week before 29 March, I felt physically ill with apprehension.  The news lurched from the one million march, via a failed Chequers summit, cliffhangers of indicative votes, to desperate resignation-for-a-deal offers from the Prime Minister, before a last-gasp third meaningless ‘meaningful’ vote – on (non-)Brexit day itself – put leaving off for another month or two.  I lurched from feeling sick with fear, to feeling sickened with relief, knowing that it would all come round again in May, or June, or October.

G is expected to have some major surgery in the nearish future.  It was supposed to happen last year, and didn’t, and then it was supposed to happen in the early part of this year, and hasn’t, and at the rate we are going, it may not happen by Christmas either.  However, its alleged imminence has meant that we haven’t been able to plan anything.  Holidays, work trips, visits to friends and family, have all been put on hold or organised in a last minute scramble.  It’s an unpleasantly stuck-in-limbo way to live.

E came home in April, for the week before Palm Sunday.  I drove him back to university and returned home feeling cramped and numb after the long round trip. The next day, I could not feel my right leg at all from the waist downwards and my left leg was without sensation down the back.  I could still walk, but my proprioception was badly off.  My legs felt like your face does after the dentist gives you an injection for a filling – movable but dead.  The GP told me not to drive any more and referred me to the hospital for an MRI and ultrasound scans.  I spent the whole of Maundy Thursday as a day-patient on the orthopaedic ward, feeling somewhere between prematurely aged and ridiculously juvenile, as all the other women in my bay were in their 80s and 90s.  After enduring  a lot of poking and prodding, two claustrophobic passes through the scanner (being maddened by the beat of reggae played through the headphones clashing with the unsynchonised ‘Whum-whum-whum’ of the machine) and a remote consultation with the regional neurocentre, I was diagnosed as having half a dozen ‘dehydrated’ and bulging discs in my neck and lower back pressing on various nerves.

I asked about physio. You have to self-refer these days, a complicated process involving a massive online form and random appointment times.  I can’t do random; events have to fit into G’s timetable, or they don’t happen, so I spent a couple of weeks’ Carer’s Allowance on three 20-minute visits to a private physio instead. Two months and a lot of exercises later, I just have numb soles to my feet, a very sore right knee and a healthy aversion to carrying heavy shopping.

During the Easter holidays, the transition social worker and a commissioner from the CCG came and did an initial assessment of G’s future care needs.  They decided that a full assessment for continuing health care was needed, and came back in the May half-term, with another nurse, to do a full assessment. Three and a half hours of trying to explain all G’s healthcare needs, and it barely scratched the surface. The outcome arrived ten days ago: a resounding ‘No’.

Unfortunately there are some things that G needs help with, on a daily basis, that Local Authority social care workers simply will not be permitted to do. Even the medical respite Health Care Assistants are not allowed to do them, only registered healthcare professionals (i.e. nurses or doctors…) and, of course, good ol’ Mum and Dad. So the decision needs to be appealed, and guess who has to do it?  Not the transition social worker, who, you would think, would have a far better idea of these processes than I.  Nope, the whole shebang has been dumped in my lap, while the social worker, jammy besom, has swanned off on holiday.

I put out a slightly panicked appeal on Twitter and got some very useful feedback (thank you, peeps).  I contacted a disabled people’s support charity and a solicitor.  I compiled a list of relevant legislation, statutory guidance and case-law, tracked it all down on the Web and read grimly through it.  It was like being hurled back fifteen years to when I was desperately researching Statements of Special Educational Needs, up against the deadline of G starting school, except this time my deadlines are a lot shorter.  I got a snakes-and-ladders feeling that I’d slid right down the massive python that spans the board from 99 to about 8.

And today, on the longest day of the year, the first properly sunny day we’ve seen for well over a week, I sat down in front of the computer, with about 23 tabs open in the browser, and piles of paperwork all over the desk, and spent the best part of eight bloody hours composing a long appeal email.  Finally, it was finished.  I went to make myself a hard-earned cup of tea before G came home, and in the ten minutes I was gone, Windows decided to do a software update and restarted the computer. Without saving my as-yet-unsent email.  I stared at the screen in disbelief.  I rummaged in the ‘Draft’ and ‘Deleted’ folders, but I had been working on the email offline.  It was gone forever.

A key rattled in the door and G came in from College.

I burst into tears, big gasping sobs and howls.  G was, not unnaturally, highly alarmed, and did not find my explanatory wails in the least reassuring.  I babbled apologies, but I could not stop crying.  G presented me with the phone: “You need to call Daddy.”  I keened down the line at P for a bit, but he was struggling to make sense of the bawled and mangled syllables that assaulted his ears, and in the end I told him I wasn’t fit to be talked to and hung up.  G propped the iPad in front of me, a favourite song already open in YouTube. “Music might help, Mum, it calms me down when I’m sad.  Would you like a hug?” I accepted the hug, and listened to the songs, and after a while felt the misery and fury begin to recede. I still couldn’t remember a single thing that I had written.  I knew there were six heads of argument, but what they were I had no idea.  Every single one of them had vanished.  My head felt as empty as a blown egg.

Slowly and methodically, I began saving the URLS on the open tabs and closing them down. Couldn’t face trying to reconstruct a whole day’s work until I’d had some time off.  I stacked the paperwork and put it to one side. I looked out of the window at the sunshine on the garden and thought of cooking and the various other chores awaiting my attention, and then I thought, what the hell, and opened up the Spider Solitaire.  I am, I thought, sick to bloody death of adulting, I’m going to be mindless and irresponsible for a bit.

I was halfway through the second game when G came in and plonked a pink post-it note on my desk.  I deciphered the lopsided writing and thought, whatever anyone may want to say about G’s academic accomplishments, there’s no denying that my Froglet has Mensa-level emotional intelligence. G’s 18th birthday is still a few months off, but the adulting thing?

Nailed.

(Mum (k)now how feeling but never give up it is hard).

Feed A Cold.

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G: Mum, can I have a peperami, please?

Me: Yes, sure, help yourself, they’re on the second shelf of the fridge.

G (gleefully): I got a hot one. I think it’ll help with my cold.

Me (puzzled): I know chilli is supposed to be quite good for you, but I’m not sure it has specific therapeutic effects on the common cold?

G (patiently, as one explaining to the hard-of-understanding): It’ll make my nose run and then I can get rid of the gunk.

*****

*****

Rules and Guidelines

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Can’t help feeling slightly sorry for the Eddie Stobart PR/comms people (whether it’s the lovely Bonnie or someone else) when they come into work this morning and see what’s been happening on the company Twitter timeline over the weekend.  Here’s hoping they feel love-bombed rather than battered.  And a mea culpa from me, as I’m about to add to the heap of waiting messages.  You see, I wish to resile from my suggestion of Elle Bea as an alternative to Connor Sparrowhawk.  Since I posted A Cab For Connor on Friday, it’s become evident that the ‘Stobart lorries carry female names only, no surnames, no nicknames’ rule is not actually a rule, it’s a guideline that’s been bent or bust on several previous occasions.

The first time of which I’m (now) aware was in 2005, when a cab was named Optimus Prime, to celebrate 20 years of the Transformers. While dear old Optimus comes from a C/Fe culture that seems heavy on the Fe and light on the C, and is therefore probably not gendered, it’s equally obvious that they (a plural pronoun seems appropriate for a multiform entity) have been assigned male by Hasbro and the film companies, and accepted as such by the Stobart company.

At some point thereafter, a truck was named Valentino.  This was apparently after ‘Italian racing legend Valentino Rossi’, a motorbike racer who has had the distinction of winning world titles in four different classes (rather than the fashion designer or the silent film star), but I can’t find any further rationale for this decision.

The third truck, on the other hand, Lee James Rigby (2015) breaks both the ‘no males’ and the ‘no surnames’ guidelines, for the best of reasons.  The fusilier, who was murdered in 2013 while LB was still in the STATT unit, had hoped to become a Stobart driver once his service days were over, alongside his father, also a driver for the firm.  It’s a great credit to the firm that they would honour Lee and support his family, by making an exception to their naming guidlines in his memory.

So I hope the decision-makers at Eddie Stobart will now pronounce themselves in favour of Connor Sparrowhawk, as

  1. There’s precedent for the use of male names, and of a surname.
  2. Connor loved Eddie Stobart lorries and felt a deep connection to the firm, which has been passed on to the people who have come to know him since his death.
  3. Connor, like Lee, died a needless and unjust death, and deserves to be remembered.
  4. It would be a wonderful thing to do for his family, who have suffered continuing injustices following his senseless – because preventable – death.
  5. Connor Sparrowhawk is just such a fabulously cool name.

Looking forward to hearing from you, @EddieStobartCom. Hope you’re all having a good Monday and that you feel a well-deserved glow of pride in doing Connor proud.

All the best

Kara.

A Cab for Connor.

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An online discussion yesterday and today, sparked by a tweet from the Eddie Stobart  haulage company about naming its lorries, has hurled some nearly-six-year-old memories into the front of my consciousness.  When LB died, his given name was known only to a few people.  For all of us out in virtual space who knew him through his mother’s mydaftlife blog, he was Laughing Boy, LB. Somewhere on there I had seen a mention that LB’s actual surname was that of a rare bird, so when a week later the obits column in the Oxford Mail mentioned “SPARROWHAWK Connor: Died unexpectedly on 4th July aged 18” I was pretty sure that was LB; and the following day, an article in the paper confirmed it with a piece on the opening of his inquest: “Mr. Sparrowhawk was found unconscious in a bath”.

Back then, apart from those two Oxford Mail pieces, Google only returned a couple of hits for ‘Connor Sparrowhawk’.  One was this lovely clip of LB, recognisable from the glimpses in the blog photos, wearing funky psychedelic wellies and a workmanlike cap, driving a ride-on lawnmower.

The other was a comment from Connor himself (now, sadly, archived and no longer accessible online) on the Carlisle News and Star‘s online obituary of Eddie Stobart Jnr.

By the time the #JusticeforLB 107 days campaign got going in 2014, many people knew how devoted Connor was to Eddie Stobart. Connor’s love of lorries has been a recurring theme ever since.  We still collect Eddie truck names on motorway trips, and since the news came out last year that the Eddie Stobart marque might be at risk of disappearing from our roads, owing to a trademarking  dispute, I’ve been tweeting our gleanings  with the hashtag #GatherYeEddiesWhileYeMay.  We’re  far from being the only ones for whom Eddie Stobart lorries mean ‘Connor’. There are hundreds, maybe even thousands, of people whose first thought, on seeing the iconic green and red livery, is of LB.

So when @EddieStobartCom posted this tweet yesterday, there were a good many replies suggesting ‘Connor Sparrowhawk’ and ‘Laughing Boy’.


Unfortunately, as yesterday’s tweet suggests and the Stobart Club website confirms, Stobart lorries only carry girls’ forenames; preferably a pair of them, to ensure a maximum of unique name combinations. Neither boys’ names, nor surnames, nor nicknames are accepted. During the 2014 #JusticeforLB campaign, one of Connor’s aunts tried to get a Stobart lorry named after Connor, but because of the rules, the nearest she could get was putting his sister’s name forward instead. 

Rodgers Coaches and Earthline Ltd stepped up and named three buses and a heavy haulage truck respectively for LB, and I’m still looking out (fruitlessly so far) for an Eddie named Rosie Bluebell, but I wonder, five years and a huge amount of Connor-related publicity later, whether the Eddie Stobart Company would consider breaking its rules, just once, and using a male name or a nickname to dub a tractor unit either Connor Sparrowhawk or Laughing Boy

It would be a fitting tribute to the firm’s No. 1 fan, not least because he always, repeatedly, questioned the reasoning behind rules, to the point where his siblings were driven to capitulation (“I don’t know why, Connor!”) and his aunt begged him to ‘turn off his Y-box’.

But if rules are rules and a pair of girls’ forenames are the only acceptable format, maybe, half a decade after they were originally approached about Connor, the Stobart company could fast-track Elle Bea?

Think about it, eh?

 

 

Not So Well Spotted.

Shouted up to Grenouille’s room to deal with a (possibly dead) ladybird on the bedroom door carpet strip. Our attics are infested with hibernating harlequin ladybirds and whenever they get into the house, G has a major freak-out fest.

I am greeted at the top of the stairs by an out-thrust hand proffering a sheet of tissue.

“Mum, mum, I’ve got you a piece of loo-paper to pick it up.”

“Can’t you pick it up, G?”

“Ugh! No! Hate ladybirds! Creepy!”

(I peer)

“G, that’s an apple pip.”

Helpful. NOT.

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Ugh. Horrible evening yesterday. Grenouille arrived home and somewhat to my surprise I saw the driver as well as the escort hovering outside the door.
“Can we have a word with you?”
“Yes, of course, come in.”

It turned out that G had been in a right old state all the way back, after An Incident during a College trip. My heart sank.

The trip had been stressing G out all week. It involved planning a Christmas shopping expedition to a big multi-retailer centre: budgeting for tickets, purchases and lunch out, then taking public transport from College to the Big City, navigating the streets and the shopping centre, interactions with strangers and food that wasn’t from the usual pack-up. Not just for a couple of hours, in our little town, with a dedicated PA, but all day, somewhere large and unknown, with shared support. For G, it was a massive, massive ask.

G is not on the autistic spectrum. But lots of the things that autistic people find difficult – crowds, noise, bright lights and colours, movement, unfamiliarity and unpredictability – are also difficult, sometimes overwhelming, for G. And don’t talk to me about clothes with the wrong kind of seam/label/cut/collar/waistband/zip/buttons, unless you really want to listen to a half-hour disquisition on the difficulties of finding acceptable garments for G. Or the head-melt of trying to explain to a terminally honest teenager, who is constitutionally incapable of understanding hypocrisy and lies, why people sometimes say one thing and do another. Threading a way through the battering of public exposure, without blowing a gasket, takes huge amounts of G’s mental energy and is very tiring. Add in physical and mobility difficulties, and – well, I hope you can understand why I, as well as G, was apprehensive.

So the preceding night, G put a careful selection of essentials into a small backpack, one that would be lighter to carry than the school bag, and rehearsed all the things that would need to be done differently about medication and food. We spent about forty-five minutes discussing and painstakingly selecting an outfit for the following day that would combine a maximum of comfort with the sort of style that G felt was appropriate to display while in a group of peers. It then took a further 2 hours for G to wind down enough actually to go to bed.

It’s no good trying to hurry G up in stressful situations. If ever there was a proof of ‘more haste, less speed’, it’s G’s reaction to chivvying. And that was one of the pressures of the trip: public transport, which has big steps and no seatbelts, and which (unlike the car that can leave whenever G is ready), won’t wait if you’re late; and doesn’t turn up until it feels like it, even if you’ve been hanging around in highly-strung anticipation for ages. Instead of a bedtime story or singalong, we had to go through several iterations of what-if-I’m-late and what-if-the-train-is-late.

In the morning, G got up good and early, and hustled through breakfast (having chosen, the previous night, something that would be easy and quick to eat). Everything went merrily as a marriage-bell. G even had time to take everything out of the backpack, and put it all back in again, to be triply sure that everything that should be there, was there, before the taxi arrived.

I watched G walk off up the path, five foot three and six stone eight pounds of heroic, if unsteady-on-the-legs, determination. In drainpipe jeans, walking boots and a short, unpadded jacket instead of the usual puffa (which would be more awkward to carry about inside the mall), G looked even tinier and more fragile than usual, and I felt a nervous clutch in my middle.

But it was fine. No phone calls, nothing, until the taxi rolled home again.

It turned out that catching the train had been a relative doddle, but the arrival went badly wrong for G. As staff – one inside the train and one outside – were encouraging G to descend, slowly and carefully, to the platform, a man waiting to board decided to intervene. The intervention consisted of seizing hold of G around the middle, apparently with the intention to bypass the lengthy climbing process and simply plonk G on the platform. College staff, horrified, immediately shouted, “No!” and stepped in to stop him. G, after further, disorientated hesitation and a bit of hyperventilating, eventually made it down safely, and was whisked off, shopswards, in the group.

G did not want to spoil things for the rest of the group by making a fuss at the time, but seemed to have had a severe delayed-shock reaction once in the safety of the familiar taxi. The taxi staff were concerned, having never seen G in such a state. I thanked them for letting me know, and they took their leave.

“G, do you want to talk about it?”

Over a cup of tea, and a restorative slice of lemon drizzle cake, punctuated with the odd shout, and dashing off to sit wedged in a cramped corner for a few minutes to help contain the bad feelings, the story emerged in bits and pieces.

“I was scared, I didn’t know what he was doing.”
“He didn’t say anything and he didn’t look at me.”
“He didn’t ask my permission, he just invaded my personal space.”
“I couldn’t see his face because his hood was up, when he put his hands on me it was scary.”
“I was shocked, I don’t like people touching me without my permission.”
“It felt like he was pushing me around, it reminded me of when I was bullied.”
“It didn’t feel right.”
“I didn’t have time to think about it then, because we had to get over the bridge to the other place. I kept it all in because I didn’t want to spoil it for the others.”
“When I got in the taxi, it all came back to me and I couldn’t help myself from upsetting.”
“I don’t want to go back to College, I’ll be remembering in my body how I felt.”
“I want to go back to College, I want to see my friends and I want to talk to my pastoral tutor.”
“I don’t want to talk to about what happened, I want to talk about how to stop it happening again.”

Ouch. Finger right on the nub of it, G, and the most difficult problem to solve, because essentially, it relies on being able to assume that people you don’t know are reasonable, respectful and trustworthy human beings. And as you’ve just found out, that ain’t always a safe assumption. So,

Public service announcement for non-disabled people:

Do NOT lay hands,
unasked and without permission,
on a disabled person going about their business,
at their pace,
in a public place,
with a view to speeding them up.
You are NOT ‘helping’.
You are committing an ASSAULT.
Thank you.

On the ‘helping’ thing, several people since then have suggested that the other person was ‘just trying to help’. I’m not buying it, because G disagrees. G did not experience the contact as an altruistic attempt to assist, but as a coercive attempt to serve the other person’s wish for speed. I am not going to argue, and I will lambast anyone who does try to argue. There was disrespect enough in this attempt to deny G bodily autonomy, without compounding it by querying G’s right to emotional and perceptual autonomy. Besides, as G said last night,

“If he was trying to help, why didn’t he talk to me? Why didn’t he look me in the face? Why didn’t he treat me like a real person?”

Quite.