Tag Archives: siblings

‘Am I mainstream now Mum?’

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We passed the 100 day mark this week. 100 days. 100 days of incarceration (though not according to some involved in this story who insist the locked door isn’t stopping LB leaving the unit). Let’s park that detail for now. And the emotions associated with this experience.

Leaving sounds are being made. Most vocally by LB. The slow wheels of social care are groaning into a ‘lets talk about potential provision at some vague meeting at some unspecified point in the near-ish future’ position’. I suspect (sadly) this may be quite something in social care activity terms in the case of young dudes like LB.

Incarceration came about because there was no care or support available. This (incarceration) has given us – er, I’m making some unsubstantiated assumptions here that Goffman would possibly be proud of – a slightly better position in terms of access to support. I’m less than optimistic about what that support might look like, given anecdotal and other information, but the bar is set so low from where we are, support of any shape that actually supports, is progress.

Reading between the lines (because nothing is transparent here) unnamed people (in health/social care/education?) are aware that LB is ready and in need of support to enable him to be released from the (I’m assuming) costly provision he’s been an inmate of for the last 100 or so days. Not that he’s locked up or anything.

Now there’s the rub. For the first time, we’re insisting on effective and appropriate support. This position makes me feel slightly heady, slightly hysterical, hugely enraged but mainly sad.

But hey. What about LB? How’s he doing?

Three things jump out this week.

1. He attended the ‘feelings’ group which was progress after the first meeting when he turned up, gave everyone the finger and left.

2. He’s asked me repeatedly this week if he’s mainstream now.

3. When I ring and they pass the phone to him, he has a nifty exchange with me – ‘Yeah, right’ ‘Yeah, cool, see you then.’ ‘Right, yes, cool, yeah’.

I’d take these three things as a sign that there is some shaking down in his mind of who he is, and what he wants.

C’mon social care (if you hold the power here). Let’s act on that and create him a space in which to live productively. And, while I’m at it, can I chuck back into the mix the feelings of siblings who are offered no support, and, if under 16, not allowed to visit their brother or sister on site?

It shouldn’t be like this.

The Unit. Day 50

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Back from work this evening to find Will here. Fab surprise.  He drove me [????] round to see LB. Yes. He drove me round to see LB.

We found LB in the living room with his DVD playing on the big screen. Everyone sat around, chatting a bit. Watching the film. Hot Fuzz. Peaceful times.

LB didn’t really say much but Will caught his attention a few times – with mention of Chunky Stan and his work trip to Somerset tomorrow. And Eddie Stobart of course.

50 days later.

The Unit. Day 37

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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.

Crispy duck, buses and Tulisa

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LB’s 18th birthday. As usual, he only wanted to open one present. The thing he’d asked for (little mechanic/bus guys). Then off to London for crispy duck in Chinatown. The trip involved a bus journey, a walk from Baker Street to Chinatown and a constant backdrop of London buses (and statements.)

“Mum. I wish I was a Londoner Mum..” “Mum. I wish I was a Londoner Mum..” “Mum. I wish I was a Londoner Mum..”…. “Mum. I wish I was a Londoner Mum..”
Then out of the blue, crossing Oxford Street, “MUM. WHERE’S ROSIE MUM?”

Wow! How cool is that??? (First time he’s asked since she started university over a year ago). I said we’d skype her when we got home.

The food was good and then it was back to Marble Arch to wait for the bus home. Big Bus Tour buses stopped at the same stop which was great. An added layer of deliciousness for the birthday boy.

After we’d been home a while, I found LB sitting in the kitchen on his own. He was waiting to skype Rosie. Sob.

Later, after a big fun filled skype session with everyone pitching in, we all (apart from Rosie) sat squashed on the settee, with crisps and pop, watching X Factor. LB loves Tulisa. She’s a Londoner.

“Mum, I wish Tulisa was my sister Mum.”
“Eh?”
“I wish Tulisa was my sister.”

Breakfast in London

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“Hey, boys, what’s it like having a room to yourselves?”
“Tom’s soooooo irritating…”
“No I’m not!”
“You are. You talk through everything you’re doing. As you do it! You even woke me up this morning to tell me you were going to the toilet.”
“That’s cos I didn’t want you to wake up and find me gone. You might have thought I’d been attacked or something.”
“Attacked? By what?”
“A rabid bear.”

Jelly bean tears

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Overheard, from the front room:

“Can you get our sweet day sweets when you go out Dad?”
“No. You had them yesterday.”
“No we didn’t! We didn’t get any in the end!”
“Oh.”
“And we haven’t had them for weeks.”
“Tom, we’re like getting a bit old for “sweet day sweets” bro…”
“I’m THIRTEEN!”
“Well it ain’t “sweet day” now.”
“You’re 19 and saying we’re too old for sweets when you had them till you were at least 16???”
“Yeah. Well, come on, you did get a lot of added benefits being the youngest…”
“Yeah, like playing ’15’ games when you’re only THIRTEEN..”
“Yeah! And the rest!”
“WHAHAHAHAHAHAAHAA…”
“Er, what you doing Tom?”
“I need some tears.”
“Eh, what?”
“WHAHAHAHAHAHAAAA… I need to test my tears.”
“What?”
“I need to test my tears for sweet stuff. Kids’ tears should taste like jelly beans. And sweet stuff.”
“Eh?”
“Not vegetables.”

Hilarious.

But I’m right back with Willy Wonka… singing Pure Imagination.

Unashamedly.

 

Progress

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It’s funny when you have a learning disabled child. The whole experience is drenched in so much unnecessary crap, and focus on deficit, that it becomes difficult to disentangle the important bits from the baggage that is thrown at you. It also takes time to step outside of the rigid, inflexible, structure of ‘normal’ child development to accepting the dude you have.

In the early toddler/pre-school days, instead of celebrating the progress LB made, I had a feverish, obsessional focus on what hadn’t happened. I wonder now if there were some thoughtful professionals along the way who tried to point out progress, but were met with a frazzled, semi-hysterical woman who found the fact LB was no longer going quite so crazy ape-shite when I reversed the car less relevant “THAN THE FACT HE AIN’T SPEAKING A WORD YET DESPITE HIS GROMMET OPERATION!!!” All very stressful, distressing and ultimately unproductive.

As years go past, those markers of normal development become more and more meaningless and I chucked em out along the way. I suppose, with hindsight, I wish someone had let me know gently and effectively early on that his would be a different path, with different milestones. I suspect that some professionals thought they were. The paediatrician sort of tried but failed spectacularly with her statement, when he was about three, that we should expect nothing and come back to see her when he reached adolescence to talk about respite holidays. I couldn’t get out of bed for about two days after that appointment.

Anyway, I’m thinking about this today because LB’s progress has shone. First, he spontaneously said “Hello” to us this morning when he got up. Second, he opened the front door to Tom this afternoon and said “Hello, Tom. How was the cinema?” Tom looked as surprised as I felt. I filled Rosie and Owen in with these happenings this evening.

“You going all posh on us LB?” asked Rosie.

The ‘good life’ and sibling interactions

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Regular followers of this blog (love you all) will know that LB’s future plans (and lack of opportunity, ‘capabilities’, ‘a good life’) are weighing heavily on me at the moment. This is causing me to examine everyday family life closely.

So. I had a meeting in London today then picked up LB from his after school club on the way back. Tom (12) was just home after playing football in the park with his mates. Later in the evening, Tom came downstairs to say goodnight. This is a new development. He no longer expects or wants us to go and say goodnight to him in bed. Half an hour later, LB was sent to bed. After a series of verbal (nudges) orders to “clean teeth, wash face, get pyjamas on” he was ready for bed (and released from our surveillance).

Then I could hear a series of exchanges. Tom was asking LB to turn off his light. This involved various prompts, all cheerful. After an encouraging, responsive exchange, the light was turned off. A further “goodnight” exchange followed. Sorted.

I started comparing Tom’s interactions with LB, with our exchanges with him. Tom, Rosie, William and Owen all talk to or with LB differently to us. As do their mates. They don’t have the baggage of the ‘special needs’ label or of growing up in world in which difference was largely hidden away, influencing their exchanges. They chat. They talk to him as a brother or a friend’s brother.  They negotiate, or adapt their chat, to accommodate LB, but it’s still chat.

I can’t help thinking that we need to learn from their chat, their interactions, their casual yet ready acceptance, if we want to allow or enable dudes like LB to lead ‘a good life’.  It’s just difficult when his whole life is framed within a ‘special needs’ space with alienating structures and processes dominating it.

Siblings

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Has to be done today. In honour of my old Rosie turning up at 10pm last night as a Mother’s Day surprise. (Sob) After the shrieks and hugging, and after Tom had led Rosie up to her room to explain exactly how much of it he’d taken over for his stop motion films, we squashed back onto the settee (with the two dogs).

And it was lovely. So lovely to hear the kids chattering on together. Like the old days.

There is a lot of randomness growing up in a house with a learning disabled sibling. For years, there was a lot of terrible tantrums that could go on for hours and hours. These were so distressing for everyone, but from early on, the others seem to have learned not to moan, not to complain and not to say ‘What about me?’ There are too many ruined activities to remember really. Holidays cut short, days out that were a combination of military organisation and plain endurance.

Being on show in public is not something that many people like. But the kids have been in the centre of countless public situations where LB has berated people for (alleged) shoplifting, being ‘foreign’ or having some visible difference. Or just had a meltdown.

We went to White Scar show cave once. Britain’s longest show cave, one mile underground.  We put on our helmets (LB loves anything to do with emergency services) and set off in a party of about 20.  Our guide, a white haired cave enthusiast, led us along the narrow passages until we reached the highlight of tour; Battlefield Cavern. It was spectacular. The guide asked Rich to turn the light off as he was standing by the switch.  There was a collective “Aaaahhhhh…” as we stood on a wooden platform marvelling the glowing stalagmites and stalactites.  But switching off the lights was not a good idea.

LB started to quietly pray. Eh????

“Dear God, please get me out of this cave safely…”

We all looked at each other. A few people turned round to look at him.

“Dear God. GET ME OUT. GOD! HELP ME…”
“Shh..LB. Shhhh now. Don’t be silly…”
“Shhhhhhh LB…” hissed the kids, nudging him.
“God. Johnny English. Dear Johnny English save me, Johnny English…”
“Shhhhhhhhhhhhhhhhhhhh……”
“…save me from the cave. Johnny English. HELP US. THE ROOF IS GOING TO FALL IN. WE.ARE.ALL.GOING.TO.DIE!!!”

Oh crap. Crap. Crap. Crap. Things disintegrated pretty quickly at that point. Britain’s longest show cave and all that. A mile underground. “Turn the light back on!“, shouted the guide, as Rich scrabbled round trying to find the switch. Children started crying, parents got agitated, LB kept praying. Loudly.

It’s probably fair to say we got out of the cave in record speed. A cross between a fast walk and a jog. Parties coming the other way were forced against the wall, as the guide, followed very closely by LB (still calling for Johnny English), went into emergency exit overdrive.

Eventually we saw daylight. LB stopped praying and cheered up.

“Funny little lad,” said the guide, panting, “is he alright?”

Despite these experiences, they all get on brilliantly. There is an easiness to their interactions, in which LB has a central role. Even though he doesn’t always respond. They all demonstrate an acceptance and understanding that isn’t articulated or remarked upon. It just is.

And I love it.