Tag Archives: autism

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 holiday

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“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.”

My diary

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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.

LB and The Artist

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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

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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.

The phone call

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[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.”

Lorry heaven and teatime

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“…. and there’s two! Two Scania’s… Ahhhhh.. lorry heaven. I’m in lorry heaven. Oh my god! It’s got my name on it!!!”
“LB, can we talk about something else at teatime? Something me and Tom are interested in?”
“But I love lorries Mum. I’m in lorry heaven Mum.”
“I know. But just while you eat your tea. Talk about something else to be sociable.”
“Sociable Mum? I don’t want to be sociable Mum.”
“Why not? You were obviously sociable last week on your school trip.”
“I know Mum. But that’s because there were people to talk to Mum. People to be sociable with Mum.”
“Well be sociable with us!”
“Ok Mum. Sorry Mum. I’ll be sociable Mum.”
“Good.”
“Do you like lorries Mum?”

LB’s speech

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LB was a school camping trip* last week. He’d prepared a speech but I had to get him just before the end presentations. So here it is;

I liked talking to Becki.
I really liked telling everyone jokes.
My favourite part of the week was looking at the lorries in Dover. I was in lorry heaven.
Thank you and goodbye.

A cracking speech.

*Thanks Amy, Alex, Rachel, Kane and Vicki! Camping in torrential rain all week (and a 4am start for a day trip to France) is way beyond the call of duty. As usual.

Sick notes and excuses

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Had a ‘chuckle’ this morning while reading tweets from mothers about their disabled kids off sick (or not) from school. It reminded me of past experiences. A key task for parents of disabled children is to weigh up your child’s ‘sickness’ status and manage nursery/access because the ‘sick bar’ is lower for disabled kids. LB now has an indefinite sick note (have I mentioned that before?) but he wasn’t any more unwell than most kids when he was a tot.

In those days, he went to the university nursery a couple of days a week while I did my degree. They soon found him a bit of a handful (despite talking the talk in terms of meeting his needs) so staff regularly contacted me to collect him. Fifteen years ago of course, mobile phones were a bit of a rarity so the nursery staff had my lecture/seminar timetable to track me down. It was pretty frustrating to get hauled out of lectures to go and pick him up. Regular heart sink moments.

“He seems a bit under the weather. We think you should take him home for the rest of the day”, they would say, handing over a grumpy little parcel of healthiness.

Halfway through term though it was reading week. Whoo hoo!!! No timetable just uninterrupted study time in the library. Such a treat. One day, after about half an hour of reading, there was a tannoy announcement in the library;

“Would Sarasiobhan please go to the nursery to collect her sick child. Sarasiobhan to the nursery please.”

Unbloodybelievable. Seriously???? You have got to be kidding me??? I sat there, surrounded by books, in my chilly little study carel thing, feeling like I had a massive arrow over my head indicating it was me. Of course, in a university of 16,000 students, no one had a clue who I was but I felt completely exposed. I packed up my stuff and wandered out of the library. Furious and frustrated. I walked about for a bit wondering if I could ignore it. “If only I hadn’t gone straight to the library..” I muttered to myself. I went to get a coffee in a cafe. Standing in the queue, deep in thought about my options, I vaguely noticed an A4 sheet of paper pinned to the noticeboard by the till. In large black font was typed;

“Urgent! Would Sarasiobhan please go to the nursery straight away to collect her sick child.”

Eeek!!!!  Game over. It was clearly serious. I legged it over to the nursery, dropping books and bits of paper, feeling guilty about the wasted ‘fume’ time.

“Ah hello Sarasiobhan.  I’m glad we got hold of you. LB seems a bit under the weather so we thought you ought to take him home for the rest of the day.”

[…]

Thinking about it, I’m not sure that indefinite sick note did start in November 2011.