Tag Archives: autism

Jaaar-depidoo

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French Week for old Laughing Boy this week. He made, and apparently proudly showed off to the rest of the school today, a mosaic of Gerard Depardieu. “Whoa, that’s random…” I thought to myself, when I first heard about it on Tuesday. “Gerard Depardieu????” (Or as LB’s pronunciation is pretty poor at the moment; “Jaaar-depidoo”).

“Why Gerard Depardieu?” I asked this evening, puzzled.
“Dunno Mum.”
“What other famous people could you have done?”
“Louis XI, Napoleon Bonaparte, Marie Antoinette…”
“So why Gerard Depardieu? Have you seen him on a film?”
“Yes, Mum.”
“What film was that?”
“102 Dalmations, Mum.”

And there it was. The answer. It ain’t random at all. LB loved the Dalmation films as a pup. He watched them over and over again. I can remember distracting him from a potentially massive meltdown one French holiday, by pointing out that Cruella was probably in the local prison and might hear him.  Laughter defeated the distress on that occasion. The DeVil years. How could I forget?

But he didn’t. So remarkable really. The certainty and infallibility of his memory.

Fanbloodytastique, as they say in France.

Meltdowns

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I’ve been thinking about meltdowns for a few reasons in the last week or so.

  1. A PhD student, @lizith, tweeted me asking if I knew of other words for meltdowns. Her supervisor thought it was a colloquial expression and she should use a different word in her thesis.
  2. A colleague asked if I thought the Louis Theroux ‘Extreme Love‘ documentary was a reasonable portrayal of the more extreme end of the autism spectrum (in particular, the part where the mother flips the son onto the floor and restrains him using her body).
  3. LB is about to go on school trip again that involves a day trip to France.

I replied to @lizith saying that I thought ‘meltdown’ was a very widely used and understood term by parents of autistic kids. I don’t think I used it myself before I interviewed parents for a project, but their consistent use of it made perfect sense to me. I asked one mother to describe what she meant by it. She replied;

Sometimes you can see the gradual build up, you can see if he has had a particularly bad day because he will sulk and he will be moody and you know that sort of come seven eight o’clock at night you can really be in for it. So then it is trying to distract him and sometimes that works and sometimes it doesn’t. And then he can go up to his bedroom and refuse to go to bed, start throwing things, jumping on his bed, sort of banging on the ceiling. Its – it is like a monster exploding. And it is very unpleasant and twelve months ago he did get very physically violent where sometimes we did have to physically to restrain him and use time out and we did at our previous house sometimes have to lock him in his room and that was on recommendations from one of the specialists at the [hospital]. We didn’t like doing it but there were times when we had to do it for everybody’s safety, but fingers crossed we haven’t had to do that for a while now.

So this extract answers 2. Yes. Parents do have to restrain their children sometimes. And it’s something that isn’t really discussed much or widely known about, which is one of the reasons I liked the Louis Theroux documentary. There is such a complex layering of guilt, despair, isolation and sadness involved in having to physically restrain your child. It seems counter-intuitive to parenting. While the rationale for doing it is largely to protect your child from harm, it’s also very upsetting to be attacked by your child. Intentionally or otherwise.

We had years of meltdowns with LB. I’ve discussed some of them before on this blog. In supermarkets, reversing the car, at home. It was never pretty and occasionally physically painful. It’s also hugely distressing and unsettling for siblings to experience. The extract above captures the unpredictability and helplessness that parents can experience once their child/children tip over into such distress. I can remember psychologists and other professionals suggesting I video a meltdown so they could actually get an idea of what I was describing. (They never offered a scrap of useful support). The thought of videoing his distress was as upsetting as experiencing it firsthand. Professionals should really have a better understanding of meltdowns, and how children, and their parents, experience them.

So to 3. LB has learnt to manage his distress so much more effectively over the years. He can cope with a lot of the things that caused meltdowns when he was younger. He’s done a lot of the learning and groundwork himself really, bless him.  Finding his way and negotiating a lot of the stuff that’s thrown at him. His school environment has helped him enormously, and the teachers/TAs’ consistent, affectionate engagement with him. Occasionally though, something unpredictable happens and ‘meltdown’ doesn’t quite capture the horror of what happens in the, for him, adult-like version of it. Like when he was told to take off his shoes by customs officers on his day trip to France last year and he thought they were going to steal them.

I’m glad I wasn’t there on that occasion.

I’d still welcome any sensible advice or suggestions by professionals but I won’t  hold my breath.

French Onion Soup

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“Hey LB, how was cookery today?”
“Good Mum.”
“What did you cook?”
“French onion soup Mum.”
“Wow! How did you make that?”
“With onions Mum.”
“Ok, onions. What else?”
“Just onions Mum.”
“What else? There must have been some other ingredients.”
“No Mum.Just onions.”
“So you got the onions. Then what did you do?”
“Made soup Mum.”
“No, you’ve missed out something. What else did you do?”
“Ate it Mum.”

Saturday morning

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“Morning LB! How you doing?”
“Good Mum. Very good, Mum.”
“Cool. What did you do last night when I was out?”
“Went to bed Mum. I was tired Mum. I was sooo knackered Mum.”
“Wow! What time was that?”
“9.30 Mum.”
“Did you sleep OK?”
“Yes Mum. After all the girls left.”
“The girls, eh? That’s good. What do you want to do today?”
“Bit of youtube Mum. Bit of DJing.”
“What would you have done before youtube was invented I wonder…”
“Why Mum?”
“Well youtube’s only been around for about five years.”
“Dunno Mum. Be sociable Mum. Talk to people Mum.”
“What sort of people?”
“You Mum. Is Stan fat Mum?”

Suing the dishwasher

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“Er Mum! Can you come here? LB won’t help do the dishwasher. He says he’s going to sue it.”
“I.AM.NOT.DOING.THE.DISHWASHER. I HATE DOING THE DISHWASHER. I AM CALLING MY LAWYER. I’M CALLING MY LAWYER RIGHT NOW!!”
“Get on with it, LB. Stop behaving like this.”
“Mum, I DONT want to do it, Mum. I NEED my downtime. I HATE doing the dishwasher. I’m not doing it ANYMORE!”
“You’ve got to do it. Don’t be silly.”
“Why, Mum? Why do I have to do it, Mum?”
“Because it’s your job. You and Tom empty the dishwasher. It’s good for you to help out. ”
“Why is it good for me, Mum?”
“Because it’s good to do jobs. And help out in the house.”
“I disagree Mum.”
“Eh?! Wha?”
“I disagree Mum. I need my downtime, Mum.”
“Oh. Really? Well what about if I decide I need downtime and stop working?”
“You get made redundant Mum.”
“And what do we live on then? If I haven’t got a job?”
“Benefits, Mum.”

A day out, autism and the good life

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Some pics from a London day out at a conference, Autism, Ethics and the Good Life, organised by the British Academy.

The audience, made up of autistic and non autistic people, academics, parents, siblings, clinicians and other professionals, contributed as  much as the brilliant range of speakers, to make what was, with a tasty lunch thrown in, an inspiring, challenging and thoughtful gig. Oh, and did I mention? Eva Kittay was there.

Yenworthy and Simon Mayo

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“Mum.”
“Yes?”
“Mum, am I going to Yenworthy, Mum?”
“Yes, LB.”
“Mum, I love Yenworthy Mum.”
“I know, LB. Do you know how I know?”
“Because I’ve told you 25,000 times, Mum.”
“Yes, LB.”
“Mum, when am I going to Yenworthy, Mum?”
“In June sometime.”
“Mum, am I going on Monday, Mum?”
“No, not this Monday. But a Monday in June.”
“Mum, when is June, Mum?”
“In about two months time. We’ve got April and then…”
“…March, Mum.”
“No, then May, then June.”
“Mum, I hate Simon Mayo, Mum.”
“I know you do.”
“Mum, I think he should get sacked, Mum. He’s so boring, Mum.”
“Mmm.. Where would he work if he got the sack?”
“In Tesco’s Mum. On the checkout Mum.”
“Hehehe.”
“Mum?”
“Yes, LB?”
“Mum, do you like Simon Mayo, Mum?”
“He’s OK. A bit boring sometimes.”
“Mum?”
“Yes, LB.”
“I love Yenworthy, Mum.”

 

“What’s the time?!!”

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“LB!!”
“Yes Mum.”
“EEEELLLLBBBBEEEE!!”
“Yes Mum. Where are you Mum?”
“IN THE BATHROOM. WHAT’S THE TIME??!”
“Dunno Mum.”
“GO AND ASK RICH THE TIME WILL YOU?”
“Yes Mum.”
[…….]

 

Meet the gang…

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It’s difficult to buy Christmas/birthday presents for a boy who doesn’t really want any presents. And has very, very specific interests – die cast model buses/lorries and the emergency services – that have remained the same for a good fifteen years.  We decided to drop the Playmobil option a couple of years ago as it seemed a bit age inappropriate, but these guys are still played with regularly. I thought they deserved a group photo. Love em.