Should she sing or should she not?

Bobby's Teaching Assistant told me that during Beliefs & Values, there was a debate about whether someone should stay or leave the country, so she started singing the title of the dilemma, which was Should I Stay or Should I Go?

 

"Can you quit singing, Miss?" said Bobby.

 

When I asked him why, he explained. "I didn't want her to make a fool of herself. She was going to be embarrassing."

 

I'm not as convinced about the Disneyland idea as I was...

 

 

Strictly Between Ourselves

The blog of 2017 is here. A bit late, granted but it is here.

So, where are we now?

Bobby came home the other day and announced that in Year 10 the school does a trip to Disneyland. “Wow, really? That’s great!” I said. I meant it. I’ve always felt that Disneyland is a compulsory part of the passageway through childhood. The trouble is that when the kids were younger, I had no idea whether they would be able to cope with it. The queues, the crowds, the chaos…Autism and Disneyland seemed mutually exclusive.

That was most of the reason. The rest of the reason was that Gavin hates enforced gaiety. I just didn’t think he’d be able to hack an entire day of Disney music, dancing and general happiness. The thought of him being sarcastic to Winnie the Pooh was too much.

But now we get the chance to make up for it!

The next day, Bobby returned home from school and said: “I’ve asked if you can come to Disneyland too and Miss said ‘We’ll see’”.

Well, that’s embarrassing. So convincing was my enthusiasm that Bobby assumed I wanted to go even more than he did and tried to get me a free ticket. Obviously, by now Mrs Drury knows that any sudden comments such as ‘No way’ might provoke a strong reaction, so decided for the 'sit-on-the-fence for two years and hope he forgets' option.

Disney is actually becoming autism-friendly, so it may be good to go for review purposes (ahem).

Alec, meanwhile, has cracked being able to take the piss out of his teachers without actually being able to talk. I see this as a genuine triumph for the comedy side of the family. The other day after PE, he let the teacher help him into someone else’s socks and then started laughing and taking them off when another teacher asked if anyone had seen Tom's blue socks. That's my boy.

Gavin and I are busy trying to find a free moment to book a city break for our 20th anniversary in October. Ironic, I know. If we could find the time to book it we probably wouldn’t need it in the first place. We’ve decided on Venice as it’s one cert in life that I’ll never take the kids there. You put Alec near any sort of hazard and he’ll try his best to kill himself, so a city built on canals is pretty much asking for trouble.

Meanwhile my friend Emma and I are torn as to whether to visit the Strictly Expo later this year when we meet up. We are both fans of Strictly, but in a covert way, because we know it’s not cool.

Actually submerging ourselves in an entire day of sequins might let the cat out of the bag. If Danny Mac’s around, though, it’s a done deal. The tickets are £70 quid though! What’s more, you actually have to plan your day. Bit like an autism conference when you have to choose which workshops you’re interested in and which talks you like, whether they overlap or not and what this headset does, and the whole thing becomes an entire headache and actually looking after autistic twins seems pretty easy in comparison.

We may have to ditch it, as organising my time when I’m with my mate Emma is something that I don’t do on principle. She seems to feel that it’s natural, because I have to do so much planning when I’m with the children, that I relax and mutate into some sort of single celled organism when I’m with her, and let her make the decisions.  This is because Emma doesn’t have kids and so her life is relatively free of washing baskets, homework diaries, consent forms, dinner money invoices etc.

Sometimes I relax too much when 'off the hook' and I now have a small reputation for breaking things in hotels as a result. My last spa break with Emma was impressive by anyone’s standards – I broke the safe to the extent that the manager had to come to our room with some power tools. Maybe I should rephrase that…Anyway, afterwards Emma said ‘I am never sharing a hotel room with you again’. I wasn't too bothered. I have learned to put any panic on hold until it's absolutely necessary. It's a survival tool gained from living with Bobby and Alec. One of my favourite phrases is The Show's Not Over Till the Fat Lady Sings. So far, she never has. I don't know why she has to be a fat lady though. I have tried that phrase in my Slimming World group but needless to say it didn't go down too well.

Anyway, Emma has obviously forgotten all that, because she’s now considering Strictly.

Shhh...I'm Reaching Middle Age

I have officially turned middle aged.

I know this because:

1) I turn down the volume on the adverts
2) I say things like 'What have we seen him in before?'
3) When Steve Wright is singing along to songs on Radio 2 it drives me mad, and so...
4) ...I am even listening to Radio 3 and Classic FM occasionally
5) I would rather shop online than bump into actual people anywhere

I mean, that's an abridged list. I could go on forever. An interest in gardening, the constant fight once out of bed in the morning not to get back in it again...

All this has made me notice that as we get older, we tend to shun lots of sensory input, unless we are in the mood for it. Remember when you were a teenager and the music couldn't get loud enough, and you'd hear 'Turn that down!' echoing up the stairs every evening? The buzz of hundreds of people bustling through town, or on the dancefloor, was a joyful experience? It seemed that my brain was craving input, input, input back then. Never enough noise!

These days, I have to be in the mood for noise. It's something I build up to, rather than surround myself with. It's given me a bit of an insight into sensory processing difficulties, because sensory processing is only really something we become aware of if it's faulty, or if it's changing.

When Bobby says that the noise of a classroom makes him feel like he is lost in a crowd, I kind of understand that overwhelming sensation. I have one of those brains that can't focus when there's a radio on in the background. I need complete calm to concentrate.

When I used to work in Public Relations, we had an open plan office, with desks separated only by fairly flimsy dividers. I would stare furiously at the press release I was trying to write whilst a colleague was laughing to a client at the desk opposite. It would drive me NUTS. I am perfectly suited to work from home, because I can get ten times more done.

When I suggested to Bobby that his brain was like an old dial up modem rather than Broadband, that got clogged with input very easily (that's something that Phoebe Caldwell quoted in one of her talks), he liked the idea but prefers to call it 'Weak Wi Fi connection'. Too much info? Try to open too many documents at once? Word is not responding! So frustrating, yet understandable.

Peace, quiet and space to process, that's all some of us need, just people with autism might need it more than others.

ps Funnily enough though, Bobby is able to play his Ipad and watch TV at the same time...when it comes to technology, the juggle seems so much simpler. But maybe that's because what he's juggling is visual, and processed a darn sight easier than sound.

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?