Wednesday, 24 September 2014

Why Can't I Be Normal and Do Things Like Stamp Collecting?

Bobby and I have a problem. The problem is that ever since Alec’s behaviour has improved, Bobby has felt obliged to ensure that his goes downhill to compensate. Since Alec has not been himself for a number of months, he’s got a whole lot of compensating to do.

This morning, emotions reached boiling point when we suggested that playing on the computer before school was not a good idea. In fact, it very much depends on what he’s playing, but at the moment, let’s just say in general it seems to have an adverse effect on the school day to come. 

Yesterday, I delivered Bobby to school with a quiet government health warning issued aside to his teaching assistant in the playground. 

At the end of the day, his home-school diary simply had an arrow pointing upwards and one pointing downwards. This is teaching assistant speak for ‘an up and down day’ and means that she  needs a darkened room and some counselling sessions.

I didn’t feel it fair to do the same thing to her this morning. Sometimes, when things are tough in the morning, everyone is in such a hurry that Bobby is hurled school-wards like a large ball of knots, which his teaching assistant then has to patiently untangle during the day. 

This morning, I suggested that we walked to school. This way, I figured, even if we were a bit late, a mixture of endorphins and a good chat with his mum might make him start the day in a better frame of mind. Call it an investment. Lose ten minutes of school at the beginning whilst walking, gain the rest of the day back in terms of not throwing a wobbler every time someone says something you don't like. I reckon in teacher terms this is a bargain. Fortunately the school understand that, too.

The walk started with Bobby’s usual wild exaggerations. At the moment these include the need for him to change personality entirely in order to live up to my no-computer ethos.

“I don’t think I should play computers anymore!” he says, his voice approaching high-pitched hysteria. “I think I want to be just like YOU and do other things, like stamp collecting!!”

Huh? I suppress the urge to smile.


Didn’t suppress it too well.

I point out that:

a)      I’m not laughing at him, I’m laughing with him

b)      He does not need to change personality and if he thinks we think this, he is mistaken

c)       We are in fact very proud of his computer prowess and tell everyone how good he is at ICT

d)      It’s not a 'no-computer' ethos, there’s a balance to everything. We just have to get the balance right.

Oh, I wish that I could say that the mood instantly lightened, that Bobby understood what I said and that he skipped the rest of the way to school. Unfortunately it’s not quite like that. It takes a while for the messages to sink in. He says the same thing - I say the same thing - we slowly unpick the knots of anxiety and with some reassurance we move forward a small step at a time.

It turns out he really is disturbed by his constant need for ‘screens’ – his term for all computer games.

“Sometimes I don’t want to be Bobby, I want to be someone else.”

I ask him why. He says it’s just too much with the screens.

“Do you mean you feel trapped by the screens?”

He agrees that he has a love-hate relationship with computers (he doesn’t put it quite like that). I ask him what the answer is.

He says: “We need to pretend it’s the olden days and give up screens!”

“Does it have to be like that. Do we really have to give up something we like and we're good at? Or is there perhaps a balance?”

"...although we CAN’T pretend it’s the olden days because it’s 2014!”

Sigh. Reasoning with someone who only sees black and white, never grey, is a bit like trying to nail down jelly.

We eventually come to the decision that we’ll make a timetable for computer time, like we did once before, which worked well.

I’m sorry that he feels trapped by his own brain sometimes and I want to help him overcome that feeling. I try to explain that this is the way that your brain works if you have autism, you become very fixed on some things and that’s nice and nasty at the same time. He blocks his ears with his hands. He doesn’t want to hear about autism today. And perhaps my articulate arguments are a little much to take in, too. Too many words. I try asking him what he feels and we step a little closer to agreement.

The walk is nearly over and the mix of endorphins and chats has worked a little. I can’t say that I deliver him in an entirely unravelled state, but a knot or two has loosened and at least he’s felt heard.

Thursday, 11 September 2014

A Painful Realisation

Spectrumite Mum doesn't really know where to start. It wasn't exactly a summer of glorious sunshine, either physically or metaphorically.

At the moment, Alec and Bobby have more appointments in their diaries than a Labour MP visiting Glasgow for the day.

Firstly, it's transition year. The word 'transition' scares the hell out of any parent of an autistic kid. Transition implies something that's gradual, like a smooth slide across a winding corridor, changing through the colours of a rainbow as you slip along it. All peaceful and lovely.

That's your aim, anyhow. What transitions actually feel like in reality is a series of sleeping policeman placed at three feet intervals along a stretch of road marked 60mph. Bump - ow! - bump - ow! - bump - ow!

Transitions, however, have been small fry compared to the set of tiny bombshells that Alec's been dropping on us over the last couple of months.

Firstly, it was the TEETH. Stubborn, awkward baby teeth just not getting the hint that it was time to leave. Alec became very good at looking as if he was brushing his teeth when in fact he was brushing the inside of his cheek in a vain attempt to keep us off his back.

We tried double-headed toothbrushes (look a bit scarey), and different types of toothpaste, iPad apps, and all sorts of other efforts, but Alec wasn't having it.

Becoming increasingly concerned at his lack of dental hygiene, I paid quite a few visits to our own dentist, who's laissez faire approach probably works well on neurotypical children. Unsatisfied, we visited the local SEN practice, who grasped the scale of the problem quite quickly and referred Alec to a surgeon to have them removed under general.

After a bit of a wait and a few pleading phonecalls, Alec was hospitalised last week for his operation. Lo and behold, they found an abscess on a hidden adult molar - and here was the root of the problem. The awkward baby teeth might have started the decay, but here was the real culprit and boy did it look painful. It was removed without further ado.

So, if you have a hunch that something's different about your child, don't rule out that they could be in pain. If we'd listened to other people, rather than our own intuition, we would have got nowhere. Alec had regressed - no wonder - it's a bit hard to concentrate on vocalising when you've got a sore jaw.