“I AM NOT DOING THE DISHWASHER AGAIN. EVER. EVER! IT’S A CRIME AGAINST HUMANITY..AND.. AND IT MAKES BOSSY KIDS’ LIVES MISERY..”
“Eh, what’s that LB?”
“Nothing Mum.”
“What are you shouting about?”
“Nothing Mum.”
“It didn’t sound like nothing.”
“Mum?”
“Yes?”
“Mum, what’s slavery Mum?”
“Where people are held against their will and forced to work for the people who hold them.”
“Is slavery a criminal offence Mum?”
“Yes. Why?”
“No reason Mum.”
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.
“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.”
Found my diary from when I was about 15. Blimey. It is hilariously awful. My teenage self was clearly on an autism spectrum related path before that path ‘existed’.
I googled ‘diary’;
1. A daily record, usually private, especially of the writer’s own experiences, observations, feelings, attitudes, etc.
2. A book for keeping such a record.
3. A book or pad containing pages marked and arranged in calendar order, in which to note appointments and the like.
Well. My diary is a big fat fail on most of these criteria. About the best I can claim is that I had a book. A book in which I kept a brief, daily record of what I did. Excluding any feelings, observations or attitudes.
A random example entry (verbatim);
Thursday 16th October
M took us in car. Double English – test on Act III. Break. Maths – Essex numeracy test till 12.00. French till lunch. After lunch, library. Miss Martin told us about Merch of Venice trip. R.E; discussion about whether ‘decent’ people should get divorced. Geography; essays back. Walked home. Cooked pizza. Butterscotch Instant Whip. Watched Change of Sex part two. Julia/George bust operation. Slept.
Each entry is pretty much the same but substitute different lessons, teachers and flavours of Instant Whip. And interject a lot of “bored” and “borings” into the lesson descriptions. I suppose there maybe a glimmer of interest for my Southend High school mates. Maybe. But probably not. I find it so random now, looking back, that I detailed ‘break’, ‘slept’, ‘walked home’. What was the purpose of it? It kind of pre-dates the Ronseal ad campaign. It does what it says on the tin. But the tin says ‘tedious life timetable age 15’.
All I can salvage from it is that I put quotation marks around ‘decent’ in the divorce discussion. Maybe there was a hint of a sociological imagination there.
Dear Iain Duncan Smith,
I’m writing about ESA and my seventeen year old son, LB. I know the process and procedures around claiming ESA are framed by a ‘scrounger’ rhetoric. Underpinned by the constant questioning of the integrity of those who are unable to work. I also know this is a spurious position; under-claims are greater than over-claims or fraud. We have so far had to provide two sick notes over six months (well three really because we had to get one to cover the 3 month backdated period). I think then an ‘indefinite’ sick note will do. I have tried hard to understand why this is necessary. What is underpinning the blanket need for a succession of sick notes? Is it simply a tool of attrition? The ‘scroungers’ will be worn down by having to return to their GP three times? GPs, in turn, will surveil their patients more closely for signs of cheating or trickery? I don’t know.
I didn’t want to get a sick note for LB. I didn’t want to because he isn’t sick. I didn’t want to because we have a ton of official paperwork highlighting and poring over his ‘deficits’ in micro detail from a gaggle of professionals; geneticists, ed psychs, paediatricians, teachers, social workers, psychiatrists…the list is endless.
I didn’t want to because it made me feel sad.
I found it more upsetting when I found out, through the allowance stopping as soon as it started, that I needed to go back for a second note. And then, again, after the reinstated allowance stopped, a third note. Perhaps if you had made it clear that three notes would be needed at the start, it would have been easier. But then I suspect my GP would have written the three on the spot, negating the need to return to the surgery (and take up his time). You may have been trying to close that loophole by deliberately making the process opaque.
Oh. I should probably add that I went to the surgery. Not LB. His GP doesn’t need to see him to know that he has learning difficulties. I wasn’t going to put him through the experience of being given a ‘sick note’ by the GP. He wouldn’t really understand that and he can get anxious going to the doctors. So it’s all a charade really. With a touch of farce.
I’m writing really to ask if you could try to get over your fixation with (fictitious) ‘scroungers’ and, instead, gain some understanding of how the process is experienced by disabled people, or their carers. And maybe shift the money invested into such a clunky, laborious and inefficient system into supported employment programmes that actually work in practice. LB wants to work. He is hoping to become an assistant caretaker.
Yours sincerely,
Sarasiobhan
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.”
“LB saw the dentist at school today…”
“Wow! Did you LB?”
“Yes Mum.”
“What did they say?”
“Open your mouth Mum.”
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.
[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.”
Overnight to Scunthorpe this week, to do some teaching. In a training centre. It was a bit surreal; there were lots of lines, some babies and very few people.
mydaftlife 