The Unit. Day 1

Saddest time ever. But we keep telling ourselves it’s a necessary stage to help LB. He’s been sectioned now. Twice since yesterday evening. And was restrained in the night. On the plus side, we can visit between 10am – 8pm and it’s close. It’s easy to pop in for 10 minutes and the open door policy gives some confidence in how the staff are treating the patients.

It’s a building rather than a ‘ward’, designed in a circular shape so you can walk down the bedroom corridor, into the dining room through to the lounge and quiet room and round to the front door. Spacious, clinical, warm and clean. The staff don’t wear uniform and it wasn’t that clear at first who was staff and who was patient. Kind of hilarious.

The other four patients are youngish. We hung out in the lounge last night, waiting to get the OK to be there (after a bit of a mix up about ‘beds’). “Do you like fishing?” Rich asked one guy who was watching some fishing programme on the big TV. “Yeah, love it. I caught five fish!” “Cool! What kind of fish?” asked Rich. “Normal fish”, he said, cheerfully. Jenny* sat quietly chatting to herself about her trip to Londis the next day. She ignored LB when he asked her what she’d ‘got’.

Today our visits were about setting LB up with home comforts. I took in the rest of the coffee cake with a mobile DVD player and his Eddie Stobart box sets. He was pretty agitated when I got there and had a right old tough nut character watching his every move from his bedroom door. Tough Nut took me to the kitchen to get a knife to cut the cake. “They always find the first couple of days hard,” he said, kindly. LB ate the cake. His first food since he’d got there.

The second visit, with my newly appointed (she doesn’t know it yet) advocate Fran, was to drop off some more DVDs and money to buy snacks. He was calmer but sad. He wants to come home. He wants to go to Trax.

sackboy1The third visit with Rich was about pimping his room. A poster of the London Underground and Beatles album covers. He was asleep mostly, endured a bit of a cuddle and asked for  Series 2 to be put on his DVD player. He hadn’t touched his dinner.

So. A long day. And here’s to the Coffee Cake Fairy working a bit of magic. LB needs it.


Transition (a steady descent)?

Here’s a photo I love of LB  at his last but one residential school trip in Devon. The one before last week when he had to be collected at a halfway point on the motorway, half way through the week. Because he was distressed, anxious and lashing out at a staff member.


I’m not sure if I’m posting this photo to hold onto his obvious enjoyment/happiness during the trip, facilitated by school staff who consistently push the boundaries with the kids, or whether I’m posting it as a record of transition (which I’m increasingly interpreting as a steady descent) into ‘adult services’. It’s probably a mangled combination of both.

I don’t understand how we allow (stop? prevent?) this descent. This change from a reasonably happy dude to someone who finds themselves at odds with life. The circumstances around LB’s current anxieties are, at the same time, specific, random and seemingly  ‘irrational’. So difficult to understand and make sense of.

Lashing out at people, and demonstrating intense upset is hugely upsetting for everyone involved. It’s happened sporadically (but memorably) in the past, but it’s uncharacteristic for LB to be so consistently unhappy. He’s pretty much had a much loved role in our family. He’s happily bypassed years of bickering, fights, wanting to win, score, or just be heard. He’s always occupied his own space, peppered with youtube and Eddie Stobart (and, thankfully in the past, Keane). For the last couple of months, he’s been unreachable, different, anxious, unpredictable and unhappy. And fucking irritating.

I was kind of pleased the GP today resisted referring LB to mental health services. He said it was medicalising a problem that wasn’t medical. I agree with that. And appreciate his refreshing approach.

But how do we stop the descent. How we get the happy surfer dude back? And who will help. It shouldn’t be like this.

LB and the school bully

“LB, what happened at school today?”
“Nothing Mum. Nothing.”



The end of year assembly

This morning was LB’s end of year assembly. A time of celebrating and sobbing. This year kicked off with Shine by Gary Barlow. A couple of young girls opened brilliantly with the first line or so then everyone else kicked in with a range of voices, shouts, words and signs. Everyone was rummaging around for tissues within seconds.

It’s the same every year.

I remember one year, when LB was about four, I’d just bought a video camera which I was really looking forward to using. The kids were brought on to the stage dressed in colourful tunics (for the ’round the world’ theme) and stood in a semi circle. I managed to locate LB in my viewfinder, with his angelic little face, pressed record and then they opened with “What a Wonderful World“. The rest of the footage is the floor, feet and chair legs and about 10 seconds of LB and his classmates singing and signing;

I hear babies cry, I watch them grow,
You know their gonna learn
A whole lot more than I’ll never know…

Not a dry eye in the house.

I think some of the emotion is about seeing such a diverse group of kids performing their socks off but it’s also seeing the staff interacting with them. They are an exceptional bunch who offer unending support and encouragement.  In this setting, unlike most others, our kids have no limits.

LB and the reversing lorries

LB was in his favourite place this morning. Sitting at the kitchen table, watching lorries rolling on and off cross channel ferries on youtube.  A cacophony of relentless grinding metal, reverse beeping lights, blaring horns and revving engines.

“Christ LB. That’s just noise,” said Richy, making a cup of tea.
IT’S NOT JUST NOISE RICHY!!!,” shouted LB, angrily. “It is NOT.JUST.NOISE.”

Richy left the kitchen, leaving LB mournfully talking to himself, and shaking his head.

“It is not just noise. It is not just noise. It is not just noise.”

“Mum, it is not just noise, Mum,” he said, looking at me sadly.
“Well it is really,” I said, as another lorry started to slowly reverse.
“, Mum.”
“Well what it is then?”
“It’s a way of life, Mum.”

The jinxed travel companion

Last Monday a few of us set off for a workshop on emotions in Prato, Italy.  I was viewed with suspicion by a colleague, aware of past exploits (for a taster, click here), as she had her hand luggage thoroughly searched at Gatwick.  This look intensified after she rinsed the gold ring, that she had worn for over 30 years, down the sink in the toilets near the boarding gate.

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Tears (and disabled children)

One thing that seriously naffs me off, is when people talk about parents of disabled children experiencing bereavement.  I think it’s careless, pat, unreflective and unhelpful.  Some may, of course. Fair enough. But I suspect an awful lot don’t.

I think the everyday rules and sense of order, predictability and certainty disappear when you find out you’ve landed a speshy.  These rules/order revolve around ‘mainstream’ lives, not the lives of families with eel children.  And I think there is a sadness. A deep sadness, that is made up of all sorts of different things. Anyway, this got me thinking about tears and how much I’ve cried since LB was born.

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