Progress

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 holiday

“Hey, LB. (Social care agency) rang today…”
“Yes Mum.”
“They said they’ve got a great holiday you can go on in the Summer. Five days at an activity centre with a few young people.”
“No Mum. I don’t want to go Mum.”
“Ahh.. it will be fab. Loads of fun and activities. You love the holidays you go on with school…”
“Who is it with Mum?”
“(Social care agency).”
“No Mum. I don’t want to go Mum.”
“Why not?”
“It will just be misery Mum. It will just be a bucket of misery Mum.”
“Well, Sue from (social care agency) is coming round in a couple of weeks to tell us some more about it.”
“I don’t want to go Mum. It will be misery, Mum. I just like lorries Mum. Irish lorries Mum.”
“Well, let’s have a bit of a think about it when we meet up with Sue.”
“I don’t want to go Mum.”

LB and The Artist

Watched The Artist on DVD last night. LB was not too impressed, as you can see below. I’ve illustrated this tale with the most artistic window display I saw for the event that dominated the UK this weekend. Big spotty pants captures it perfectly for me. That’s all I’m saying.

“Mum? Is he [George V] deaf Mum?”
“No. He ain’t deaf.”
“Why won’t he talk Mum?”
“It’s a silent movie LB. There isn’t any talking in it.”
“Why doesn’t he just talk?…. Why.doesn’t.he.just.talk?
“Are you enjoying it LB?”
“No Mum. I hate it.”
“Why?”
“It’s so boring Mum.”
“Boring? Why?”
“It’s just.. It’s just SILENT Mum.”

The ‘good life’ and sibling interactions

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.

The phone call

[ring ring…. ring ring….]
“LB! Can you get the phone?!”
[...ring ring…. ring ring….]
“I don’t know where it is Mum.”
[…ring ring…ring ring…]
“LOOK FOR IT! Hurry up!”
[…ring ring…. ring ring….]
“I don’t want to look for it Mum!”
[…ring ring…. ring ring….]
“Just get the phone LB and bring it here.”
[…ring ring…. ring ring….]
Can’t find it Mum! I.can’t.find.it!”
[…ring ring…. ring ring….]
“Look properly. It’s probably on the charger.”
[…ring ring…. ring ring….]
“WHAT THE HELL DO YOU WANT ANYWAY????”
[…ring]
“It stopped Mum.”

LB and the ‘c’ word

“Hey, LB. Tell Mum what you called me when I came in yesterday,” said Richy.
“The ‘c’ word Mum.”
“What?!!! What did you do that for???”
“Dunno Mum. It just came up and out of my mouth, Mum. I’m sorry Richy. I won’t say it again, I promise.”

Postscript: We ain’t made him stand in the corner. He’s peering at the bus depot through the park fence. Honestly.

The Christmas jigsaw

Every year we do a family Christmas jigsaw.  Well, it’s not really a family jigsaw. Rich hates em. Owen, Tom and I have always been at the puzzle frontier. The others used to drift in towards the end when the bulk of the work had been done. The puzzle late-comers. After the glory.

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A slice of breakfast life

Last Christmas I gave you my heart…
And the man was sectioned. He was ….”
“Your mum was a big Wham fan, Tom.”
“WHAT? No I wasn’t!”
“… a PAEDOPHILE.”
“Shhh LB and eat your porridge. I was not a Wham fan.”
“Yeah, yeah, yeah.”
“Stop making it up. So irritating.”
“Me irritating? Living with you is…”
“Dad, I’ve lived with Mum for 12 years now and it’s been pretty good.”
“Aww..thanks Tom. How many years have you lived with me, LB?”
“Dunno, Mum.”
“Think about it LB. How old are you?”
“Seventeen, Mum.”
“So how many years have you lived with me?”
“Dunno, Mum.”
“If you are seventeen years old, how many years have you lived with me?”
“Three, Mum.”

LB, the bugs and the rubbish bin

Faithful blog followers may have recognised a bit of a rubbish bin theme developing here. There was the hanging out in the swing bin era and the time LB chucked the egg of trust in the bin. Tonight, it’s another bin tale.

A few years ago we had a family get-together at our gaff and my two young nephews turned up with an electronic bug each they’d just got from a local shop (well a pretty cool local shop really, so I shall give em a plug here)*.

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The family forum

Some years ago, we decided to hold a family forum. I don’t know why really. I think we had some romanticised notion (bit like the latest John Lewis Christmas ad offering) that it would be an opportunity to democratically discuss activities, mealtimes, different ways of spending time together.

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