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.


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.

Imagination and recognition

Rosie was off to see a mate last night. We found out recently that this mate’s dad was the sleep guy who discharged LB from his sleep study all those years ago when it became apparent LB was not going to respond to the study interventions.

Hey! Can you ask P to let his dad know that LB’s now sectioned, and that he’s part of the collective of health and social care professionals who did zip all for him…? Cheers“, I quipped. Though of course it ain’t funny.

Accountability? I can’t bear to work out the cost of the combined salaries and hours and hours of meetings with H/SC profs [too numerous to remember each and everyone of them] over the years, but for LB to end up sectioned a few months after turning 18, suggests these interactions were largely pointless. Other than sustaining some pretty weighty salaries in some cases, I can’t think of any productive help these meetings generated that couldn’t have been suggested by anyone with a bit of common sense. And LB ain’t alone.  We know of four of his (slightly younger) peers who have been sent out of county in the past 18 months.

It’s as much about recognition as accountability. Recognition that ‘expertise’ in this area is often limited in effect. This is never acknowledged but it would be a lot easier to manage if it was.  With this recognition, we could have saved all that time travelling to, and in, meetings, and muddled along (as we did anyway). This could have been underpinned by the reassurance that if things took a turn for the worse, there is a very local nifty little mental health/learning disability unit. A unit that will take LB in and give him some proper attention.

Mmmm. Slight problem here is that the unit is not widely known about. We found out through a friend of a friend. The profs couldn’t even deliver at the point of crisis. I still can’t quite get my head around the fact that this unit is based about 50 metres from the office of the psychiatrist who discharged him days before he was sectioned.  And that a few weeks earlier, on February 6th, I sent the following email to his Care Manager;

Hi [CM],

Is there a number I should ring in a crisis? [LB] is at home (as it’s Wednesday) and he’s been quite threatening to me and himself.



The research group I work for focuses on understanding, using and improving people’s experiences of health and social care. I’ve always hoped that this blog offers an insight into what it’s like to be the parent of a disabled child and negotiate the challenges and obstacles created largely by the lack of effective support, services and general attitudes towards difference. I never imagined the direction it would take though.

Right now, in the space that’s left by LB’s removal (which I’m experiencing as a mix of peaceful relaxation and sporadic gut-wrenching memories that are winding in their intensity), I’m struck by the ongoing crapness of H/SC. While LB is being very well cared for in the unit, we haven’t heard a sniff from anyone other than Oxon County Council demanding back contributions of £500 towards LB’s care. Despite some fairly tense phone calls about this (based on the fairly straightforward point that he ain’t had any care, and we just have a unusable glut of direct payments in a bank account), a week or so ago, the letters keep arriving.

I rang the Fairer Charging  [I know] office again to ask them to stop sending these reminders.

Oh, yes, I can see a note on the file, saying this is being looked into.”
Yes, so could you stop sending any reminders about it?
I can’t do that. These letters are automatically generated.”
Spontaneously? With no human involvement in their generation? LISTEN.TO.WHAT. YOU’RE.SAYING
“Well that ain’t good enough.”
“There’s nothing I can do about it. I suggest you ignore them.”
“Could you try and imagine, just for a moment, what it’s like for us, to have our son sectioned partly because we had no support, and then continue to receive demands to contribute towards that non-existent support?”
“I can’t stop the letters but there is a note on the file.”  

This exchange, like so many others, underlines the lack of imagination and empathy, and general crapness within health and social care. Small point, but I would have appreciated some contact from CM since the email I sent on March 15th stating “LB’s punched his teacher. What can we do?” She’s been back off leave for a week now and could have spent a moment sending a brief response. She’s LB’s Care Manager, silly. Nothing to do with you now he’s an adult. I disagree. LB isn’t a discrete entity, disconnected to social networks. He’s part of a family. And that also needs recognition.