One step too far...

Year 8 begins extremely well for Bobby.

Now settled and pretty sure himself, he refuses to take part in drama. "I can't do all that pretending to be someone else stuff," he tells me. "I'm not good at drama". The first bit I can understand, it's part of autism. But I beg to differ with the second statement.

It's a confident start and I decide that it might be nice for Bobby to venture away from the smallest cafe on site, designed for Year 7s, and have a go at one of the other cafes in the school. Partly this is because the other cafes have a healthier menu. The online payment system tells me what Bobby has been eating and it can't fool me. I know that 'stuffed crust' is just a posh term for pizza.

Bobby greets this idea with the same level of questioning that would greet a suggestion that he joins MI5.

"What if I don't like the food?"

Answer: Here's a menu, let's asterisk all the stuff you'll like.

"But what if I see it and I think I like it and then I don't like it and I waste it and then I'm hungry?"

Answer 1: Just go and get another meal.
Answer 2: I can pack extra sandwiches in case.

"But then what if you congratulate me and I don't want to be congratulated?"

Answer: I will pretend it is the smallest deal on Earth.

Obviously trying out a new cafe just like that is a bit too much of a step in a new school year. I've suggested that he just looks at the cafe first.

"But what if I end up in the queue and then I'm FORCED to get some food?!"

You don't have to queue you'll just peek.

I even suggested to the teaching assistant that they did a taster session for him...which they actually might, because it's that sort of brilliant school.

But for now, it's stuffed crusts and 'poshdogs'.

Happy New Year: A Stitch in Time Saves 90,000

You may have thought that New Year was a time for celebration. You’d be wrong there. Bobby isn’t that fickle. Every New Year, before he rings in the new, he mourns the passing of the old.

BIG TIME.

“I will never see 2015 again!” he sobs and for once I can’t argue with his logic.

To Bobby, time is an easy continuum to follow until it gets to December 31^st. Then it seems to feel like walking off a plank. I tried to resolve this by explaining to him that:

a) Time is constant, it’s the years we assign to it to make sense of it that have start and end dates. In other religions for instance it isn’t even New Year.

b) Time is more like a wheel than a plank and there’s no gap between December 31^st and January 1^st.

He thinks for a bit about my little pearls of wisdom and then announces that he’d prefer to call tomorrow December 32^nd and we'd better not wish him Happy New Year or else.

This isn’t exactly what I'd call a solution, but temporary measures can sometimes act as a perfectly acceptable sticking plaster, since by January 2^nd Bobby will be heaping praise on 2016 being the best year yet – and I know it. This is because a new Pokemon something or other is coming out in January and the Pokemon Mystery Dungeon game is due out in February.

Right now, Gav and I are in the middle of a film with a 15 certificate (funnily enough it's Ex-Machina, fittingly about emotional intelligence) and it’s on pause whilst we settle the New Year’s Eve grief, so I’ll readily agree to anything that seems to work for him. 

“It was my last year at Outwood in 2015!” Oh no, everything that’s final seems to have reared its ugly head again, including sad primary school farewells.

I suggest that Bobby makes a diary for 2016, so that he can relive every moment of it on New Year’s Eve next year. Finally, having written in his new diary ‘RIP 2015’, Bobby settles down to sleep. 

It is so much easier now that he’s 12. I can usually gauge the level of distress and what sort of attention it needs. We ignore the impending signs of meltdown at our peril. A little sob over something you think is silly can easily be brushed aside with some comfort when you’re dealing with a child who isn’t autistic. If you brush Bobby’s cares away in this flippant manner, they flare up like flames, even worse than before. Sometimes, when I’m in a hurry and I can’t be bothered to sit and analyse, I do try the wet tea towel method. Occasionally it works.

“Do I look worried?”

“No.”

“Does dad look worried?”

“No.”

“Well then, trust us. There’s nothing to worry about.”

Most of the time unfortunately this doesn’t work. "Just trust me," is a hugely unsound logic.

So, have the conversation. Think of it as an investment. 

It’s a case of a Stitch in Time Saves 90,000.

Residential Day 1

The news so far from the residential is that Bobby's canoe didn't capsize.
So that's good.

The other kids were ambling up to school with petite overnight wheely cases as I dragged Bobby's 'compact' suitcase, which felt as if four elephants had managed to stowaway inside it, to the back door. I then took his poor teaching assistant through all the Bobby 'extras'. I don't think the tour manager for Madonna's Rebel Heart show had much more information to contend with.


If I were a normal parent, I'd be thinking that all this 'extra' represented spoilt behaviour. To Bobby, this change is massive and anxiety-provoking. Let's not make it any harder than it is. Even if it does mean having his own tour bus.

I didn't hear from Bobby early that evening, as he spoke to his dad on the phone whilst I was taking advantage of some quality time with Alec to take the train to Chester and back.

Still, I texted Gavin from the train after his brief (very male) text that said:
'Bobby's called. He's fine.'


Not enough information.'He may call you later,' texted Gav. 'Or he may not. I think they're only allowed one call. Like prison.'

This wasn't helping.

I was just watching Tony Hadley surviving his first conflict in the I'm A Celeb jungle when the phone went - it was Bobby's teacher. Apparently he was a little homesick.

'I had a good daa-a-a-a-a-a-a-ay' he wailed. 'But now I'm a bit...sniffle...sob....'


Okay so he's a bit homesick at night when finally faced with a bedtime routine that doesn't feature yours truly. Unsurprising. The fact that being outdoors in a boat hadn't fazed him was actually pretty amazing. His teachers reassured me that he was doing ok. I didn't feel nervous. I know he's in good hands and that they'll call me if he gets distressed. I trust those people and that's the main thing. On a scale of one to major meltdown, he sounded like he was having a minor hiccup. One that I wouldn't blame any 11 year old from having when away from home for the first time.

Let's hope he's busy building lots of memories that he'll look back on with pride.

Meanwhile, Alec is LOVING IT without Bobby around. Front seat of the car all the time. Fried eggs for dinner (Bobby doesn't 'do' eggs), lots of attention, no noisy 'bed engine' start up session from Bobby at night...he's not exactly being sentimental, put it that way.

OMG It's The R-R-R-Residential

KAYAK OR CANOE? Neither if I'm completely honest

Well, I guess I should thank Bobby's school. After all, having gained a 'Miss Slinky 2015' title from my local Slimming World group last week (I kid you not, although I'll spare you the cringeworthy photo with sash) and only being 4lbs away from my target, I need a bit of angst to help me shed those last pounds just that bit quicker.

And I got it okay, in the form of Bobby's pre-residential freak out fest.

Year 7 are going on a little holiday. Two nights in Wales and you'd think that I'd signed off an application for Strangeways.

It was all going swimmingly well with not a wobble in sight, until tonight. We looked at the timetable together. Lots of questions were answered, but there were so many more, unanswerable ones. I couldn't tell him exactly what his room would look like. I couldn't describe exactly what each activity would consist of. I couldn't even guarantee that he'd enjoy it, although I did of course (by betting him a fiver that he would), because my confidence in him is, in these situations, akin to his confidence in himself.

So I've ommitted that story of myself age 11 hating every minute of camp, missing home terribly, looking at the communal tin of breakfast jam in horror (that for breakfast? But I have Rice Krispies!) and not much liking the toilet arrangements, either. Who the heck sent me to camp thinking I'd enjoy it? What about me said 'outdoors girl' to them?

Heck you don't have to be autistic to find a change in routine a nasty experience. Although to be fair Bobby won't be having to endure a crappy tent and sleeping on a surface that feels like rock.

What's frightening is just how much detail of my own experience (34 years ago) I still recall. The stakes are high here. If Bobby enjoys it, his confidence at secondary school will be boosted. But he's doing so well, has already gulped down many new changes... and if it goes badly, he may take a while to bounce back.

Here I have to set aside my own parental anxieties a little and trust the experience of the school, whose inclusion policy means that the trip is adapted for each individual pupil regardless of ability. Not a single pupil in Year 7 is left behind. That's got to be laudable.

Still, I can feel my heart ripping to little shreds as Bobby's anxious tears keep coming and he wails that 'Everyone else is excited about it! And I don't know anyone very well - not really...and it's going to be like the army...'

Here I have to correct him. Just because the word 'outdoors' is mentioned, it doesn't automatically mean that the army are involved. At least I hope not because when Bobby last attended a paintballing party, he polished off most of his own side.

To help him, I ask Bobby to recall some other situations where he was very nervous but came out smiling - solid evidence that will prove his fears unfounded. Together we think of a couple of examples and then he does that really scarey 'I'm pulling myself together face', puts on a fake happy smile and says 'You're right mum I am going to be brave and conquer this and stay for FIVE days...' There's an air of hysteria about him now and it takes a further 20 mins to calm him down again.

Blankies 1 and 2 will be packed. Weetabix will be packed. The iPad will be present, with yours truly reading bedtime story on it (yep I know he's old for a bedtime story but it's part of the routine). Everything will be fine, I tell myself, breathing deeply and reaching for the Valium.

Truth is, I climbed the walls when Alec was happily enjoying his residential in Bendrigg two years ago. Since Alec's accident in 2005, I've become a slight nervous wreck when parting with either of my lads overnight. I can't let Bobby see this of course, but I know that the minute he's gone I'll be worrying about everything from a coach crash to a capsizing canoe. I could probably even find a hazard in the Quiz Night if I thought about it for long enough.

I really understand this autism-anxiety thing. You can tell your brain that worry is illogical, but it doesn't stop it from happening. And it's true this is the biggest challenge Bobby has ever faced. I can't hide that from him. This is the newest of the new in every sense.

But he's growing in confidence and surprising us with his achievements every week.  I can't clip his wings with my over-protective worries whether he'd like me to or not. It's not good for him - and it's not good for me, either.

Bobby is growing up. However painful it is for both of us, I've got to let him.

Otherwise, how will he know just how much he is capable of achieving?

When anxiety is the soundtrack to your home life

Spectrumite Mum is experiencing a bit of emotional exhaustion at the moment.

To live with an autistic child means that anxiety is like constant background music. If like me you're being constantly reassuring, or trying to peel someone off the ceiling because their emotions have gone into overdrive a little too quickly, then don't underestimate the effect of absorbing all that stress.

After all, once you've absorbed it, it has to go somewhere.

Due to lack of exercise, meditation and the general peace and quiet afforded to me when the kids are at school, the stuff that I've absorbed in the last week has gone nowhere. Instead it's roaming around my body like toxic waste.

So this is my three point plan:
1) Do some exercise
2) Take some breathing space
3) Talk to noone unless they enhance my wellbeing

Sounds simple doesn't it? Try following it. It's harder than it looks.

Doing some exercise is no problem, I need to put the house the right way up again after half term. If you don't mind, AuKids Issue 30 may have to wait until the vacuuming is done. That's just the way we roll here. I can't work in a mess.

I'll also take a few minutes to just sit. This is a big problem for me.

Sit. Just sit there. Don't get up. Don't think. Look at the trees outside. Do that mindfulness crap. Argggh I need to get up and ....no! Sit down! 

After 60 seconds break I get jittery. But today I am going to assign myself my own personal coach - me - and I will just sit and finish my coffee. Recharge. Because a spent battery is not much good to anyone.

I'm also really careful about who I hang around with. I used to have endless resources - and so any friends who were anxious about something were very welcome to come over and transfer all their anxiety onto me. I liked it, I enjoy being there for people, being a helping hand, the voice of reason, a listening ear...

You can't avoid other people's problems and you wouldn't want to, not if they are true friends or family. But I do make sure that my resources are tip top before I see them. I am quite aware of how I feel before I pick up that phone or have someone over. I say 'no' a good deal more than I used to. You have to - 80% of your emotional resources are in use constantly. You have very little left.

Be mindful of it and use it well.

Worth Its Weight in Gold

HEAVYWEIGHT HERO: Alec with his weighted 'yoke' on his lap

For some years now, Alec, our 11 year old son who is non verbal, has become the master of the high-pitched scream. This isn't a distressed scream, it's more of a passing the time of day thing.

He doesn't do it all the time and he doesn't do it every day. It is more of a down time thing. It's like a hobby.

And it's driven us nuts.

You wouldn't believe the analysis this scream has been subjected to.

Well you would. You've done this sort of thing yourself, I'm sure.

Is it attention seeking?
Is it that he's bored?
Is it a sensory feedback aural thingy?
Is it a verbal feedback thingy?
Is it that he's low on proprioceptive awareness and gets a bit 'high'?

The thing is, as is always the frustration, I can't walk around in Alec's head, so I don't know.
I have a slightly comforting thought that even if I could walk around inside Alec's head, it wouldn't tell me the answer. In Alec's head, the dialogue probably goes like this:

'Toy Story, Toy Story Toy Story Toy Story...we interrupt this programme cos I wanna scream...Toy Story Toy Story Toy Story Toy Story...'

So, I'm not sure my own 11 year old is able to know why his body needs what it needs either. I know this because Bobby, Alec's verbal autistic twin, is equally confused by his knee-jerk reactions. I often get: 'Sorry about that. I seemed to over-react there.'

Anyway, for two years we've put up with on/off screamining that measures 90 decibels on our iPod calculator. We've seen visitors jump out of their skins and then politely smile as if to say 'No, really, it's natural for me to pour my tea all over myself'. I've had some days where I sit in my bedroom breathing deeply, calming myself through the noise, because I know that if I'm less calm then he'll pick up on it.

This week, a weighted collar (known as 'yoke') from Southpaw (www.southpaw.co.uk) landed up in Alec's class. Alec's teacher tried it on him. And he stopped screaming.

This is it:  http://www.southpaw.co.uk/weighted-yoke-412-p.asp


Tempted as I am to hang out the bunting and declare this a Bank Holiday (dedicated to the Patron Saint of Peace and Quiet), interventions sometimes work with Alec only temporarily until he gets used to them.

We've tried weighty things before, to little effect. But this thing is quite a lot heavier than what we've tried. It's not just little beans, it's quite substantial.

At home, I've draped it around his shoulders when he's started screaming - and he's stopped.
I've also put it on his lap and it has a calming effect, too.

It can't be worn all the time - it's rather heavy, he takes it off understandably and anyway, what you wear all the time you adapt to and it loses the effect.

Maybe this is why Alec was always so calm at the hairdresser? She put a weighted collar around him.
Who knew?

If this does help long term, it makes perfect sense. We know that Alec is low on his proprioceptive sense - that is the sense of his own body in the space around him. He is constantly seeking feedback, and most notably has a tendency to dust my sofa for me by flinging himself back on it with great force.

This weight is like two hands pressing down on your shoulders. Maybe he feels more solid, more balanced.

Maybe the need to scream is just to hear the sound of his own vibrations.

So I will keep you posted, but if your little one sounds similar to Alec, talk to an occupational therapist about trying something weighted. Don't go out and spend money just yet, try seeing if something similar seems to make a difference, or borrow one from your school.

With us, this was worth the weight...excuse the pun. And now if you'll excuse me, it's back to the sound of silence..

My Son Turns into Marty McFly

So, Bobby cannot sleep tonight 'because my bed engine isn't working'.

'Your wha-?'

'My bed engine, usually I press the button four times, pull the blue lever and it helps me to dream. But it's not working.'

(Quick think on feet having suddenly realised that my son has been replaced by Marty McFly)

'Have you tried the emergency button? You know, the one you press that gets it going in a hurry?'
 
'Mum, there is no such button. It doesn't have an emergency button.'

Well durhh.

Sent him to bed with a project to think of his Christmas present list. John Lennon said 'Give peace a chance' I have revised this and told him to give sleep a chance. Sometimes he tries to rush it.
Kids with autism don't have imagination? Yeh, right.