tag:blogger.com,1999:blog-4916319261429980292024-02-22T00:32:53.677-08:00SPECTRUMITE MUMBlog written by Debby Elley, co-editor of AuKids magazine, about her twins Bobby and Alec, who have autism.Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.comBlogger103125tag:blogger.com,1999:blog-491631926142998029.post-41207541861292997262017-03-03T08:39:00.002-08:002017-03-03T08:39:56.606-08:00Should she sing or should she not?<div class="" data-block="true" data-editor="2ncc4" data-offset-key="fmp1j-0-0">
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<span data-offset-key="fmp1j-0-0"><span data-text="true">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?</span></span></div>
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<span data-offset-key="bdan8-0-0"><span data-text="true">"Can you quit singing, Miss?" said Bobby.</span></span></div>
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<span data-offset-key="fuko0-0-0"><span data-text="true">When I asked him why, he explained. "I didn't want her to make a fool of herself. She was going to be embarrassing."</span></span></div>
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<span data-offset-key="fuko0-0-0"><span data-text="true">I'm not as convinced about the Disneyland idea as I was...</span></span></div>
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Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-87673696387408412502017-03-03T06:33:00.002-08:002017-03-03T06:33:15.983-08:00Strictly Between Ourselves<br />The blog of 2017 is here. A bit late, granted but it is here.<br /><br />So, where are we now?<br /><br />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.<br />
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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. <br /><br />But now we get the chance to make up for it!<br /><br />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’”.<br /><br />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.<br /><br />Disney is actually becoming autism-friendly, so it may be good to go for review purposes (ahem).<br /><br />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.<br /><br />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.<br /><br />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.<br />
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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.<br />
<br />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.<br />
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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.<br />
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Anyway, Emma has obviously forgotten all that, because she’s now considering Strictly.<br /><br /><br /><br /><br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-25578273723071486692016-09-14T03:18:00.000-07:002016-09-14T03:18:01.012-07:00Shhh...I'm Reaching Middle AgeI have officially turned middle aged.<br />
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I know this because:<br />
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1) I turn down the volume on the adverts<br />
2) I say things like 'What have we seen him in before?'<br />
3) When Steve Wright is singing along to songs on Radio 2 it drives me mad, and so...<br />
4) ...I am even listening to Radio 3 and Classic FM occasionally<br />
5) I would rather shop online than bump into actual people anywhere<br />
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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...<br />
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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!<br />
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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.<br />
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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.<br />
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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.<br />
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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.<br />
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Peace, quiet and space to process, that's all some of us need, just people with autism might need it more than others.<br />
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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.<br />
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<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-35379556332869447652016-09-12T12:23:00.000-07:002016-09-12T12:25:28.509-07:00One step too far...Year 8 begins extremely well for Bobby.<br />
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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.<br />
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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.<br />
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Bobby greets this idea with the same level of questioning that would greet a suggestion that he joins MI5.<br />
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"What if I don't like the food?"<br />
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Answer: Here's a menu, let's asterisk all the stuff you'll like.<br />
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"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?"<br />
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Answer 1: Just go and get another meal.<br />
Answer 2: I can pack extra sandwiches in case.<br />
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"But then what if you congratulate me and I don't want to be congratulated?"<br />
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Answer: I will pretend it is the smallest deal on Earth.<br />
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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.<br />
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"But what if I end up in the queue and then I'm FORCED to get some food?!"<br />
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You don't have to queue you'll just peek.<br />
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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.<br />
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But for now, it's stuffed crusts and 'poshdogs'. Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-19021092398168159722016-01-01T03:03:00.000-08:002016-01-01T03:14:25.115-08:00Happy New Year: A Stitch in Time Saves 90,000<!--[if gte mso 9]><xml>
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<br /></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbQyWMgMnUXdcqphAuS9nWFniQn4xHFlXD6dGacntP0-vAeq0WF-k3_wlRsouZWK4aHvr4gyzSntvtZ1nOuROhaxc54E1EjZCPVDnxj1qeWQkaojs5V_1YRy2xLvpXt1On6I1J2z7rzOo/s1600/fireworkd.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="424" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgbQyWMgMnUXdcqphAuS9nWFniQn4xHFlXD6dGacntP0-vAeq0WF-k3_wlRsouZWK4aHvr4gyzSntvtZ1nOuROhaxc54E1EjZCPVDnxj1qeWQkaojs5V_1YRy2xLvpXt1On6I1J2z7rzOo/s640/fireworkd.jpg" width="640" /></a></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
</div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
BIG TIME. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“I will never see 2015 again!” he sobs and for once I can’t
argue with his logic.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
To Bobby, time is an easy continuum to follow until it gets
to December 31<sup>st</sup>. Then it seems to feel like walking off a plank. I
tried to resolve this by explaining to him that:</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
b) Time is more like a wheel than a plank and there’s no gap
between December 31<sup>st</sup> and January 1<sup>st</sup>.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
He thinks for a bit about my little pearls of wisdom and
then announces that he’d prefer to call tomorrow December 32<sup>nd</sup> and we'd better not wish him Happy New Year or else.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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<sup>nd</sup> 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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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. </div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
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.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
“Do I look worried?”</div>
<div class="MsoNormal">
“No.”</div>
<div class="MsoNormal">
“Does dad look worried?”</div>
<div class="MsoNormal">
“No.”</div>
<div class="MsoNormal">
“Well then, trust us. There’s nothing to worry about.”</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
Most of the time unfortunately this doesn’t work. "Just trust me," is a hugely unsound logic.</div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
So, have the conversation. Think of it as an investment. </div>
<div class="MsoNormal">
It’s a case of a Stitch in Time Saves 90,000.</div>
Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-76989664608246999422015-11-17T08:53:00.001-08:002015-11-17T08:53:19.126-08:00Residential Day 1The news so far from the residential is that Bobby's canoe didn't capsize.<br />
So that's good.<br />
<br />
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.<br />
<br />
<br />
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.<br />
<br />
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.<br />
<br />
Still, I texted Gavin from the train after his brief (very male) text that said:<br />
'Bobby's called. He's fine.'<br />
<br />
<br />
Not enough information.'He may call you later,' texted Gav. 'Or he may not. I think they're only allowed one call. Like prison.'<br />
<br />
This wasn't helping.<br />
<br />
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.<br />
<br />
'I had a good daa-a-a-a-a-a-a-ay' he wailed. 'But now I'm a bit...sniffle...sob....'<br />
<br />
<br />
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.<br />
<br />
Let's hope he's busy building lots of memories that he'll look back on with pride.<br />
<br />
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.<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-68297003934612697182015-11-14T17:39:00.000-08:002015-11-14T17:40:25.079-08:00OMG It's The R-R-R-Residential <br />
<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh13pePP2QW5EYr0ijm1uPuL3AlX-cWWdEy3-GLEKSzGwO0qpr5Zew5M4ewzVZ4pRhjkLX6GWKMudHnVtAFn_n9D6hUs1HRzG9_YJW0GBjfytyldd1SYwAtTdiFpcAW4Ny1hWkNHUgQvHc/s1600/canoe.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEh13pePP2QW5EYr0ijm1uPuL3AlX-cWWdEy3-GLEKSzGwO0qpr5Zew5M4ewzVZ4pRhjkLX6GWKMudHnVtAFn_n9D6hUs1HRzG9_YJW0GBjfytyldd1SYwAtTdiFpcAW4Ny1hWkNHUgQvHc/s1600/canoe.jpg" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">KAYAK OR CANOE? Neither if I'm completely honest</td></tr>
</tbody></table>
<br />
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.<br />
<br />
And I got it okay, in the form of Bobby's pre-residential freak out fest.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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?<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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...'<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
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.<br />
<br />
Bobby is growing up. However painful it is for both of us, I've got to let him.<br />
<br />
Otherwise, how will he know just how much he is capable of achieving?<br />
<br />
<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-26981014028853465292015-11-02T00:03:00.001-08:002015-11-02T03:07:42.655-08:00When anxiety is the soundtrack to your home lifeSpectrumite Mum is experiencing a bit of emotional exhaustion at the moment.<br />
<br />
<div class="separator" style="clear: both; text-align: center;">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg2AUcr8WNDsgNiQhcLvWE35oyC-ZHjAbuEGrPdqU4-O-iadxgwMkybVm6exjo7yokIbMPRxYrv-zamZFF5kcTE_3BcSNAtelW3Xdn_Mv59aKV9TSwJ4nz1bit5lS3YjQPVzDx0Cqg_DQ/s1600/cartoon-crazy.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="247" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEgg2AUcr8WNDsgNiQhcLvWE35oyC-ZHjAbuEGrPdqU4-O-iadxgwMkybVm6exjo7yokIbMPRxYrv-zamZFF5kcTE_3BcSNAtelW3Xdn_Mv59aKV9TSwJ4nz1bit5lS3YjQPVzDx0Cqg_DQ/s320/cartoon-crazy.jpg" width="320" /></a></div>
<br />
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.<br />
<br />
After all, once you've absorbed it, it has to go somewhere.<br />
<br />
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.<br />
<br />
So this is my three point plan:<br />
1) Do some exercise<br />
2) Take some breathing space<br />
3) Talk to noone unless they enhance my wellbeing<br />
<br />
Sounds simple doesn't it? Try following it. It's harder than it looks. <br />
<br />
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.<br />
<br />
I'll also take a few minutes to just sit. This is a big problem for me.<br />
<br />
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! <br />
<br />
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.<br />
<br />
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...<br />
<br />
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 <i>constantly</i>. You have very little left.<br />
<br />
Be mindful of it and use it well.<br />
<br />
<br />
<br />
<br />
<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com2tag:blogger.com,1999:blog-491631926142998029.post-79708214401466940052015-10-23T02:18:00.004-07:002015-10-23T02:43:05.228-07:00Worth Its Weight in Gold<br />
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_yF9g7cRq1sBtXYa75umood5UI9NlirpCCpINf47Nj2gWd4e3Nid0W2rt2BYhBH3uolu2LgTo9GdxzCP-M4M25xopy5zZ8AybmoGaHTm3AMmR_wmlZv1vsU_ED23V8lUbuHFPnfBXQrw/s1600/alec.jpg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEg_yF9g7cRq1sBtXYa75umood5UI9NlirpCCpINf47Nj2gWd4e3Nid0W2rt2BYhBH3uolu2LgTo9GdxzCP-M4M25xopy5zZ8AybmoGaHTm3AMmR_wmlZv1vsU_ED23V8lUbuHFPnfBXQrw/s320/alec.jpg" width="239" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">HEAVYWEIGHT HERO: Alec with his weighted 'yoke' on his lap</td></tr>
</tbody></table>
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.<br />
<br />
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.<br />
<br />
And it's driven us nuts. <br />
<br />
You wouldn't believe the analysis this scream has been subjected to.<br />
<br />
Well you would. You've done this sort of thing yourself, I'm sure.<br />
<br />
Is it attention seeking?<br />
Is it that he's bored?<br />
Is it a sensory feedback aural thingy?<br />
Is it a verbal feedback thingy?<br />
Is it that he's low on proprioceptive awareness and gets a bit 'high'?<br />
<br />
The thing is, as is always the frustration, I can't walk around in Alec's head, so I don't know.<br />
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:<br />
<br />
'Toy Story, Toy Story Toy Story Toy Story...we interrupt this programme cos I wanna scream...Toy Story Toy Story Toy Story Toy Story...'<br />
<br />
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.'<br />
<br />
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.<br />
<br />
This week, a weighted collar (known as 'yoke') from Southpaw (<a href="http://www.southpaw.co.uk/">www.southpaw.co.uk</a>) landed up in Alec's class. Alec's teacher tried it on him. And he stopped screaming.<br />
<br />
This is it: <a href="http://www.southpaw.co.uk/weighted-yoke-412-p.asp">http://www.southpaw.co.uk/weighted-yoke-412-p.asp</a><br />
<br />
<br />
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.<br />
<br />
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.<br />
<br />
At home, I've draped it around his shoulders when he's started screaming - and he's stopped.<br />
I've also put it on his lap and it has a calming effect, too.<br />
<br />
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.<br />
<br />
Maybe this is why Alec was always so calm at the hairdresser? She put a weighted collar around him.<br />
Who knew?<br />
<br />
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.<br />
<br />
This weight is like two hands pressing down on your shoulders. Maybe he feels more solid, more balanced.<br />
<br />
Maybe the need to scream is just to hear the sound of his own vibrations.<br />
<br />
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.<br />
<br />
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..<br />
<br />
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<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-89754586661881148982015-10-05T14:08:00.000-07:002015-10-05T14:08:33.423-07:00My Son Turns into Marty McFlySo, Bobby cannot sleep tonight 'because my bed engine isn't working'.<br />
<br />
'Your wha-?'<br />
<br />
'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.'<br />
<br />
(Quick think on feet having suddenly realised that my son has been replaced by Marty McFly)<br />
<br />
'Have you tried the emergency button? You know, the one you press that gets it going in a hurry?'<span class="text_exposed_show"><br /> </span><br />
<span class="text_exposed_show">'Mum, there is no such button. It doesn't have an emergency button.'</span><br />
<span class="text_exposed_show"><br /> Well durhh.</span><br />
<div class="separator" style="clear: both; text-align: center;">
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<span class="text_exposed_show"><br />
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.<br /> Kids with autism don't have imagination? Yeh, right.</span>Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-39697993645647662052015-07-24T06:05:00.001-07:002015-07-24T06:09:38.619-07:00I counted on you - and you delivered<br />
<br />
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<tr><td class="tr-caption" style="text-align: center;">MOVING ON: Alec and Bobby say goodbye to primary schools today</td></tr>
</tbody></table>
<br />
<br />
It was a nervous Bobby who stood on stage surrounded by his year group, about to embark on the performance of their lives. Nervous, it turns out, for all the right reasons. This is the week he leaves the comfort blanket of primary school behind. This is the night that all his small acts of bravery over the last six years culminate in one giant courageous performance.<br />
<br />
There are two performances tonight. The show that the 11 year-olds are putting on for their parents is impressive, but nothing compared with the performance it requires to pretend to be fine about the massive changes ahead. I speak for Bobby of course, and not for his peers, but judging by the tears accompanying the Bruno Mars song 'Count on Me', it's a pull for all of them.<br />
<br />
Here is the face, once so small and babyish, who barely made it onto stage in Foundation Stage without plenty of bribery and a costume daubed with Numberjacks. Here is the little guy who hardly spoke when he entered primary school, now singing and acting with all of his mates. Making an announcement at the end. Bright red with the emotion and pressure of it all, but getting the job done.<br />
<br />
It's a triumphant end to a successful stage of his life. I've put everything into this, as have his teachers and his teaching assistant M'lanie. We've given it all we have, and at the end of it we have a happy, confident individual loved by his friends and capable of real emotional sensitivity.<br />
<br />
I've only just gulped back one set of tears and it's time to head to Alec's school for his leavers' assembly. Alec has a vague notion of what's going on (it isn't Christmas and it isn't his birthday so he must be moving school). The book he's presented with charts his successes in humorous terms as well as serious ones.<br />
<br />
Remember that time you were on the residential trip, Al, and got high as a kite on marshmallows when the TA wasn't looking? That time you were twiddling plastic reptiles and then nearly tried the same thing with a real one when the zoo came to visit? Alec's ability to laugh at tickling himself is pointed out by several, his admirable determination when it comes to food is a constant theme and his generally laid back approach to life is admired by all.<br />
<br />
Handing your kids over to other adults during the day may be a relief in some ways, but it's also a massive worry, particularly when they're only five. Then you realise that there are people out there capable of loving and caring for them in the same way that you do. It's not you and them any more, it's an army of people preparing them for the world.<br />
<br />
And I am grateful to every single one of them.<br />
<br />
<br />
<a href="https://www.youtube.com/watch?v=zvnaluRm5p8">https://www.youtube.com/watch?v=zvnaluRm5p8</a><br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-40339427579623607832015-07-06T11:46:00.001-07:002015-07-06T11:50:22.271-07:00Dear BBC....<div class="separator" style="clear: both; text-align: center;">
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Conversations in our house are getting more interesting these days, on account of Bobby's current special interest in the BBC.<br />
<br />
It started off with his interest in the historic analogue/digital switchover, which fascinated him. In particular he liked watching the old announcements just before the analogue signal was switched off. You Tube obliges nicely in this department.<br />
<br />
This quickly grew into an interest in all the BBC logos (or idents as they are apparently called). He collects You Tube videos of BBC 2's and likes the one of the 2 as a fluffy duck the best (although the twos flying towards a silver paint pot is a close second). He's even informed me that viewers in Northern Ireland get different BBC 2 idents of their own. Another thing I would never have known were it not for Bobby and his delightfully random interests.<br />
<br />
Anyway, the news that BBC Three was to go online wasn't a big shock, but when Gavin implied that they may rebrand it and not call it BBC Three anymore, there was dinner time consternation, followed by a lot of iPad tapping when I suggested that he might like to take it up with the BBC.<br />
<br />
I found the BBC's customer services online and realised that his letter had already been prepared.<br />
<br />
It read:<br />
<br />
<i>Hi, so when BBC Three goes onto computer please DO NOT rebrand it just add new logos if you can. Oh yeah and I'm a child even though I like watching the logos. </i><br />
<i>Bobby </i><br />
<i>ps I've been on a trip to the BBC where you broadcast.</i><br />
<br />
I felt that this might require a brief explanation and so I added a tiny bit of background. When his special interest six years ago was Aquafresh, they sent him some toothpaste. You never know, the BBC may be kind enough to send us some sort of logo poster.<br />
<br />
It will make a welcome change from Skylanders.Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-14537883627905489412015-07-05T10:22:00.003-07:002015-07-05T10:25:11.450-07:00Why does it always rain on me?Alec and I walked to the nearby village festival today.<br />
<br />
This is a journey that would take me roughly ten minutes at a fast walking pace. It takes me half an hour with Alec, mainly because it takes us along a main road and if there's one thing Alec loves, it's watching cars go past.<br />
<br />
Part of me is thinking, if cars going past make him happy, then why shouldn't it take half an hour? The A-type part of my personality is wanting to get to our destination as quickly as possible. Then in float some philosophical thoughts about how ten years ago, after Alec's near-fatal accident, the thought of him ever walking again was amazing, let alone pootling for several miles under his own steam. So I let him watch for cars, but at the same time I'm saying 'Walk AND watch, Al, walk AND watch...'<br />
<br />
The gorgeous sunshine makes a dawdle worthwhile, and as we arrive at the packed fair, I text Alec's teacher, who is there with her grandchildren. She wanders over just as I'm trying to squeeze Alec into the front of a Thomas the Tank Engine ride designed for toddlers. His long legs make it impossible, and so I post him in the back, and she accompanies him with her little ones in tow.<br />
<br />
Ah perfect, I think, looking around at the pleasing amount of Alec-friendly rides on view. It starts to spit and I exchange some 'oh, the British weather eh?' looks with some other parents. You can tell Alec would rather be on the waltzer, but the Thomas theme had sold it to him.<br />
<br />
Suddenly, the heavens open and it's as if someone's emptied a bucket of water over all of us. This is no quick summer shower. This is a big deal, havoc-wreaking storm. One of the stall tents blows away. Screaming youngsters run for cover. There is a mass evacuation of summer-clad families, all completely unprepared for the rain.<br />
<br />
We all take a dash to a stall, but the rain is sweeping in and we're already soaked. Looking at the skies, this isn't going to clear. The exit is five long minutes in the monsoon. Gavin texts to say that he's coming to collect me (with Bobby, who had refused to be dragged away from the computer).<br />
<br />
We're all weighing up the right moment to dash from the tent to the exit, except for Alec, whose arm is stretched out towards the rocket ship ride. The rain is a mere trifle. He still wants a go. I buy him a soggy fluffy worm character attached to a long stick to keep him quiet.<br />
<br />
We run as fast as we can, considering there is a double buggy and several children in tow. As we pass the tornado-blasted food stall, Alec points hopefully towards the candy floss. We're so soaked by now that any further rain makes no difference and very eventually we find the car, the children are piled inside and the rest of us walk back home,with the rain easing off.<br />
<br />
I part walk, part run home to keep myself warm, and am shivering in the porch when Gavin turns up with the twins in tow, having been stuck in queues of traffic through the village.<br />
<br />
We get through the door and I rub Alec's hair with a towel.<br />
<br />
"And that,' declares Bobby 'Is why I always stay indoors.'<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-78537976488222019892015-07-03T02:08:00.003-07:002015-07-03T02:11:19.783-07:00School Life Part TwoIt's been so long! Welcome back (hopefully via AuKids' new and improved website).<br />
<br />
So, to business, Bobby's practice day at his new secondary school.<br />
<br />
Bobby's first concern about leaving primary school is losing touch with the entire universe.<br />
<br />
For most people who aren't on the spectrum, it's a case of keeping touch with your best mates and 'so long, have a nice life' to the others.<br />
<br />
Bobby can't do that. This is because he sees all 30 of his classmates as his friends and although there is a slight differentiation between best mates and others, to him they all deserve hooking up with.<br />
<br />
To be fair, they have down to the very last child been extremely supportive of my little dude. <br />
<br />
Pointing out the practicalities of keeping in touch with 30 people would not help and I know Bobby well enough to know that this isn't really the point.<br />
<br />
His fixation with keeping in touch with his classmates is really about the bigger picture - losing touch with a whole life that he's been comfortable with for the last six years. Losing them represents being plummeted into an unknown abyss.<br />
<br />
The way he expresses this scarey feeling is: 'I must not lose touch with ANYONE.' So don't take it literally folks, just address the fear it represents.<br />
<br />
Although I know that he will certainly lose touch with a lot of the pupils, as he did with his nursery friends - and not only that but it won't especially bother him when he has new friends - I am not going to point that out. I just tell him that he'll have lots of new friends as well as old ones and that we'll be certain to keep everyone's details.<br />
<br />
M'lanie (heaven-sent teaching assistant extraordinaire) is on it, too. She has helped him to create a book featuring every single one of his classmates, their contact details, what they want to be when they grow up and which school they're going to. He is aghast that some of them don't know their email address by heart. I'm more aghast by some of their career choices...still since my own son wants not to be married/not to have kids/spend entire life being a You Tuber, I guess I shouldn't comment.<br />
<br />
The rising panic about leaving primary school is evident in Bobby's notes to himself for his Leaver's Assembly: 'Be brave. Pretend it's nothing'.<br />
<br />
The height of my rising panic roughly resembled his own yesterday, even though I knew that the mainstream secondary school I've signed him up for is HOT on autism.<br />
<br />
I tried not to straighten his hair as we waited outside for him to begin his try out day and my fingers were itching to tuck in his vest, but although Bobby's young for his age I felt it would be unwise to show it in front of the burgeoning gaggle of pre-teens hanging around in clusters around him, so I left him to it.<br />
<br />
He didn't seem too nervous - that's where ten years of telling him he's marvellous have paid off. I was glad of his confidence as he waved goodbye.<br />
<br />
Mid-morning I received a text from his teaching assistant saying that he was actually working and really enjoying himself. I nearly fell off my chair. <br />
<br />
He emerged smiling amid reassuring noises from his teaching assistant that it had all gone really well. On closer inspection, his bag contained a welcome book. In it, he'd descibed his day as 'Cool and awesome' and after filling in a page titled This is me... he'd put 'LOL - Like it!'<br />
<br />
They got a LOL. Praise indeed.<br />
<br />
Stuff not asking autistic kids too many questions, I delivered them like a machine-gun in the car. Back in his comfort zone, playing his 3DS to chill out, he wasn't especially bothered about answering them. He just said it was a cool school and he'd obviously eaten well because half of it was still round his face.<br />
<br />
Although Alec has many more difficulties than Bobby, his transition will be a lot easier. His small special secondary is the natural progression to his primary school, they already know him there and it's all very relaxed.<br />
<br />
Bobby, on the other hand, will be an autistic fish in a mainstream pond of social sharks. But they will take good care of him, I know that, and I can only see a bright future ahead. Full of LOLs.<br />
<br />
<br />
<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-11496230489502137722015-04-01T12:39:00.000-07:002015-04-01T13:07:31.456-07:00Bobby's Version of An Arthurian ClassicFor Bobby's English work, he decided to retell the story of The Lady of Shalott.<br />
Original by 'Some guy with a very long beard' (according to Bobby)<br />
<br />
I haven't edited it. It's kind of cute the way it is.<br />
<br />
His middle name isn't Lewis. He just can't pronounce Llewellyn....<br />
<br />
<br />
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<br />
<br />
THE LADY OF SHALOTT<br />
BY BOBBY LEWIS ELLEY<br />
(no plagiarism there then)<br />
<br />
Long long ago on a little island far away. The Island was called Camelot.<br />
There were rivers<br />
and streams<br />
and lilies<br />
and everything.<br />
<br />
There were four grey towers and four great walls. That was the beautiful castle of the Lady of the Shalott.<br />
<br />
The Reapers were Reaping early nearby. (The Lady of Shalott) she sometimes looked in the mirror.<br />
<br />
She was quite pretty I think.<br />
<br />
But...A terrible curse was on her. If she looked down to Camelot she would DIE in a few hours.<br />
<br />
But she didn't know what the curse was. And I told you my friend.<br />
<br />
But just sometimes my friend some people are outside the towers and she didn't look.<br />
<br />
There were damsels, abbots (I can't tell it all!) and oh my! But she still looked in the mirror and said..I am half sick of shadows.<br />
<br />
Sigh.<br />
<br />
Then there was a sound of a horse. And a brave knight was riding it outside the tower. His suit was so metal and silver. And he looked fearless...He sang a little song "Tirra Lirra". The Lady of Shalott's mirror saw him.<br />
<br />
Suddenly, she made three paces through the room. And oh no! CRASH! She looked down to Camelot. The mirror cracked from side to side. She shouted...The curse has come upon me! She ran out of the tower and for her life. She found a boat and some woods. She went into it.<br />
<br />
She released the chain and went through the river. She wished she hadn't looked down to Camelot.<br />
<br />
But then she sung her last song. Some people (knights) were in Camelot and they heard the goodbye song.<br />
<br />
Her eyes darkened and her blood was freezing. Then when she finished, she died. Everyone came to see her...<br />
<br />
I feel like I'm going to cry now...They realised...she was dead.<br />
<br />
They (knights) crossed themselves for fear. <br />
<br />
All the knights in Camelot looked at her. Lancelot mused a little space. He said..."She has a lovely face"<br />
"God in his mercy lend her grace"<br />
<br />
And That...is the story.<br />
<br />
The End.Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-54123821757230052982015-02-11T02:21:00.002-08:002015-02-11T02:27:30.496-08:00A Puzzle A Day<br />
<table cellpadding="0" cellspacing="0" class="tr-caption-container" style="float: right; margin-left: 1em; text-align: right;"><tbody>
<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOee-3fuUemxJsTxsIVTwj6tS8q3wvmIgi5j4DWGiOZCP4BCJjP08B2jdV_6O8j2TlPQehXnm_sVHHdBe5hulMW64A-wEukmz8ttUvd7eb-pRzg1jRSzPGprEf4PNjoJj01D9AhYpJetk/s1600/dots.gif" imageanchor="1" style="clear: right; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjOee-3fuUemxJsTxsIVTwj6tS8q3wvmIgi5j4DWGiOZCP4BCJjP08B2jdV_6O8j2TlPQehXnm_sVHHdBe5hulMW64A-wEukmz8ttUvd7eb-pRzg1jRSzPGprEf4PNjoJj01D9AhYpJetk/s1600/dots.gif" height="400" width="383" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;"><b>CAN YOU TELL WHAT IT IS? No, I can't either.</b></td></tr>
</tbody></table>
Join the dots. Yeh, that's what I've decided Bobby's conversation is, a join the dots puzzle.<br />
<br />
This morning he said to me that it was Internet Safety Day at school yesterday.<br />
<br />
Then he said, in a seeming non-sequiteur (that is a phrase that I learnt at A-level and I am bloody well going to use it even though it sounds like a gardening term) - that on this game he's playing they talk about how easy the levels are, or how hard the levels are.<br />
<br />
I am used to Bobby's conversation being a bit random, but in this case I asked a question.<br />
<br />
"What has the game you're playing got to do with the fact that it was Internet Safety Day yesterday?"<br />
<br />
"Because they don't talk about people, they talk about how hard or easy the levels are."<br />
<br />
"Ah. I see, so you're telling me (or doing your best to convince me) that the game your playing is safe?"<br />
<br />
"Yup." ('flap flap flap' because I actually got it).<br />
<br />
When we talk about 'theory of mind' (knowing what's in another person's head), it's not a case of you have it or you don't. There are levels of understanding. Bobby for instance does realise that he needs to tell you stuff that you don't already know about him and his thoughts. What he doesn't quite get is that you can't follow his train of thought, so he misses bits. You just get the stations in between - or the dots.<br />
<br />
Actually, quite a few neurotypical people do this as well. When chatting with two friends I can think of, I feel like I'm watching catch-up TV and I've missed the first episode. I feel like saying (and I sometimes do) 'Hold on, go back, rewind...'<br />
<br />
My mum has this habit of only realising that you don't know what she's talking about at last minute. This was a standing joke when we were younger. So she'd say: "It's good. The dinner." Obviously myself and my two brothers never let this lie and would mimic it back, because parents can't get away with anything.<br />
<br />
The trouble is that when it's hard work to follow someone, you tend to switch off.<br />
<br />
I'd like to have the join the dots conversation with Bobby, but I don't want him to feel too self-conscious about his chat, or have to think about it too hard, because he's doing pretty well at conversation. I think the only way is to gently ask him what the link is each time he does it, so he learns to join the dots for other people.<br />
<br />
I might tell him that people are stupid like that. They can't read your mind.<br />
<br />
<br />
<br />
<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-72285681414652906362015-02-05T01:51:00.001-08:002015-02-05T01:56:24.017-08:00Is She Really Going Out With Him?SPECTRUMITE mum is wondering whether she really should have graciously covered Spectrumite's Son's coolness (or rather general apathy) towards romance by buying his girlfriend a Valentine's card and a tin of sweeties.<br />
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<tr><td class="tr-caption" style="text-align: center;">HAPPY COUPLE: Bob & loyal Afton</td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
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<br />
Still, I felt the need to help him out after he scrawled 'love Bobby' in last year's card to her and received in return a giant handmade venture with personalised poetry inside. It wasn't quite worthy of a Shakespearean sonnet but it wasn't far off.<br />
<br />
I have until now considered it an achievement that an autistic boy of 11 has had a girlfriend for four years.<br />
<br />
But recently I've realised that I need to take two important facts into consideration:<br />
<br />
1) The achievement is actually hers, for hanging on for dear life to the relationship without a huge amount of encouragement from Romeo.<br />
2) To say that you're 'going out' with someone in primary school generally means that you're on nodding terms with them.<br />
<br />
Still, this bodes well for the future. All he needs to do is find a wife who doesn't mind whether he notices he's married or not.<br />
<br />
Alec's love affair, if you're wondering, remains firmly with the biscuit tin, which never lets him down.<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-51504109156851229172015-02-04T06:47:00.000-08:002015-02-04T06:58:19.741-08:00Tell Me Why... I Don't Like Tuesdays!<br />
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<tr><td class="tr-caption" style="text-align: center;"><span style="font-size: x-small;">STITCH IN TIME: We can't avoid arguments all the time, </span><br />
<span style="font-size: x-small;">but autistic kids have to learn how to make amends</span></td></tr>
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<blockquote class="tr_bq">
SPECTRUMITE Mum (that's me, that is) is feeling very happy that she caught up on her sleep recently. This meant that when Bobby kicked off at school yesterday, I felt pretty calm about it. I had plenty of resources at my disposal and thus resisted the urge to kick the library door down and shout 'WHAT ON EARTH HAVE YOU BEEN DOING?' </blockquote>
<blockquote class="tr_bq">
Believe me, this is not a method that reaps many rewards.</blockquote>
<br />
Following on from a previous post, the reason Bobby kicked off at school could have been:<br />
<br />
1) That it was a Tuesday. You know how Bob Geldof felt about Mondays? Well that's what Bobby feels about Tuesdays. I don't know why, he just does.<br />
<br />
2) He had a break using his Nintendo DS and felt that he was rushed and had lost some material on it. This triggered a massive storm in a teacup during which he insulted Saint M'lanie (his teaching assistant).<br />
<br />
3) Undercurrents of hormonal disturbance caused by incoming - red alert! - puberty!<br />
<br />
4) Undercurrents of imminent secondary school panic/horror.<br />
<br />
5) All of the above<br />
<br />
6) He just felt moody<br />
<br />
It helps very much that school doesn't greet me with an e-fit poster of Bobby posted on the front door reading 'Wanted for crimes against the curriculum'.<br />
<br />
As usual it's just a case of letting me know that there's been a bit of an allhellbreakloose moment. The more we chat about what to do next, the better our ideas become.<br />
<br />
School never gets me on the defensive by a 'this is what YOUR son is doing, whatcha gonna do about it?' style attack. It is more a case of, we all love Bobby, Bobby's not been living up to his usual high standards, how can we help? This is much more productive.<br />
<br />
I decide to pop over to school at lunch, since Bobby refuses to come to the phone.<br />
<br />
One thing I'm not going to do is to tell him (tempted that I am) is that if he'd not had autism, he would no longer be wearing the head boy sweatshirt this week, having kicked off like that.<br />
<br />
That would not be helpful. He is autistic. That's the point.<br />
<br />
One of AuKids' most useful advisors is Dr Heather MacKenzie, who is really good at helping kids to develop executive functioning by asking them what they think rather than telling them what to do. Since being on her SPARK course, I use her techniques a lot.<br />
<br />
Bobby knows full well he's messed up. By the time I've arrived, he's already apologised to one teacher. A guilty, very sorry looking state meets my eyes. Or rather, won't meet my eyes. Bobby's ready to blow, but I can tell it won't be anger but tears. The fact that I'm here at all is embarrassing enough. <br />
<br />
We both know he caused a scene so the question I ask Bobby is 'How are you going to put it right?' He suggests apologising to the entire world. I suggest that one or two people might be enough. I think he may have hurt some people by his words I tell him. "What you mean like injured?"<br />
<br />
"Words can hurt people by making them feel sad inside, even if you don't mean them."<br />
<br />
That's news to him. Once they're out, they're gone as far as he's concerned.<br />
<br />
Another technique I'm working on is a visual way of making him change his mood, by imagining that he's a Lego man who can change heads. He loves the Lego Movie so this could work although I've only tried it once or twice. I'm trying to help him get over his bad moods more quickly this way.<br />
<br />
Part of the problem is that he writes off Tuesdays. The minute something bad happens on a Tuesday, it confirms his worst suspicions.<br />
<br />
On a friend's advice, I show him something reeeeeeeally good that I've found out about Tuesdays - all new video games are released in America on a Tuesday.<br />
<br />
"So Tuesdays aren't all bad then?!"<br />
<br />
Phew. That's one problem solved. We can't always stop ourselves from doing the wrong thing, but it does help if we know what to do once we've messed up. <br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-82986028109683010012015-01-30T12:33:00.001-08:002015-01-30T12:33:13.808-08:00Chief sub-editor on my caseChief sub Bobby has just had a go because I misread the names of his Furbies.<br />
Corrected now. I'm useless.Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-60792948604560525052015-01-30T12:21:00.000-08:002015-01-30T12:35:12.522-08:00Bobby's AutobiographyYes, I know that 11 is a bit young to write an autobiography.<br />
<br />
Still, you've got to start somewhere. Here it is:<br />
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<br />
<br />
Hi everybody! My name is Bobby Lewis Elley. Here is the start of my autobiography.<br />
<br />
3.12.03 I was born then. I didn't even know anything. One minute later, my brother Alec was born.<br />
<br />
When I was 4-5 or 3, I went to Kids Unlimited. Then I went to Valley School, then to Outwood School. I was 11 when I wrote this autobiography.<br />
<br />
One of my worst times was when Alec fell out of the bedroom window and broke his speech. He had to stay in hospital for 6 weeks or less. I was Special Good Boy (SGB) though. Some of my best times was Let Loose, Game Beast, and Jump Space. I got my 3DS on 10.4.12 I have some pets named Furby Booms. They are called Kee-Tah, An-Koh and May-Boo. Mum wants a cat. I want a hamster.<br />
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My hobbies are video games and Pokemon trading cards. I like Mario, Sonic, Pokemon and Ludus.<br />
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My favourite fruit are apples. I eat them every day. Also I like Roblox. What I want to be when I grow up is a game tester. Also the other ambitions are to be a teacher. The most important thing in my life is Love. My life is Love.<br />
<br />
I'd describe my friends as the most talented, the most interesting and the most special people. They would say that I am awesome! The best day was when I went to Game Beast for my 10th birthday. The things that I am not keen on are 'well done' stickers. I don't know why! But everyone has to be afraid of something.<br />
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My family are excellent. I inspire...myself.<br />
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My family's names are Gavin (Dad), Debby (mum), Alec (brother), Paula (grandma) and Stanley (Papa). I have lots of unique ideas. But I can't tell them all.<br />
<br />
My mum runs a magazine called Aukids with her friend Tori. I hope you like this autobiography world!<br />
<br />
Bobby Lewis Elley.<br />
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<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-47492167166275291702015-01-30T06:35:00.003-08:002015-01-30T06:35:37.038-08:00Losing the Hippy BackgroundOur social network adviser has in the most tactful possible way indicated that the background I've chosen for this blog makes her feel like throwing up. Maybe I was so bored with the old scheme that I overdid it a bit. Maybe this is why rag-rolling and paint effects were so successful in the Eighties. Everyone was bored of stripey wallpaper.<br />
<br />
Then they went a bit far in the other direction.<br />
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<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-18959967233315823322015-01-29T11:35:00.001-08:002015-01-29T11:52:55.142-08:00Why Does He Do That?<br />
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<tr><td class="tr-caption" style="text-align: center;">SPECTRUMITE TED: Available from www.finsdesignandprint.co.uk</td></tr>
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<br />
The blog's got a new look - like it? Loud, isn't it? It's designed to wake me up and kid me that I'm some sort of partying psychedelic hippy during the day. Hopefully this will make the ever-present urge to crawl back to bed, which I've been experiencing over the last - er, ten years - a little less irresistible. <br />
<br />
One of the things that causes me to head for the duvet is the rather draining and repetitive question concerning either one or both boys, which circles my head almost daily.<br />
<br />
The question is: <i>Why does he do that?</i><br />
<br />
Answers range from:<br />
<br />
a) I'm pretty sure that I know<br />
b) I've got a rough idea and have narrowed it down to 3 possibilities<br />
c) I've not the foggiest<br />
d) I've not got the foggiest, but does he have the foggiest either?<br />
<br />
Now I'm guessing that I'm not alone here, because most of our correspondence with readers is generally along the same lines.<br />
<br />
Any behaviour is tolerable as far as I'm concerned, if I've got a reason for it. Knowing the reason makes it easier to deal with and easier to help as well.<br />
<br />
That's why so much of AuKids is geared towards answering the 'Why do they do that?' type of question. We're guessing you think like we do. We don't want to know a bit more about it, or moan about it for two pages. We want to know WHY! <br />
<br />
That's why we did an article on visual distortion in our January issue. It's a confusing quagmire of a subject. The deeper you get into it, the less you understand. There are also loads of confident claims about what helps with visual distortion, yet what we came across was that there just isn't enough scientific evidence to back any type of intervention 100%. There's far more written on dyslexia than on the sorts of visual distortion that our kids experience. <br />
<br />
What's all the more difficult with pre-verbal kids experiencing visual distortion is that they can't tell you what they see. Consequently you only know if something helps by a change in their behaviour. Even then, how do you know that it's down to the intervention you've given them?<br />
<br />
Drowning in research, I nearly gave up tackling visual distortion. Then I came to think about what our readers really want. They want to know WHY.<br />
<br />
I came across one paper on the subject that made real sense - Olga Bogdashina's brilliant summary of the sorts of visual distortion that autistic kids can experience. We shortened it, made it easy to digest, and added the best information we could find and some easy ideas to try at home before parting with your hard-earned cash for something more expensive.<br />
<br />
We're already onto the next 'Why...?' for April's issue.<br />
<br />
Our experts are currently scratching their heads on the subject of mysterious tears. You know, the ones that seem to come from nowhere, seemingly without cause. With other kids, crying is so often an obvious consequence. Not so with ours.<br />
<br />
Expert Dr Heather MacKenzie, who lives in Canada, has pointed out that we are in arrears with the Cadbury's chocolate bars we send to her as payment. This is because I keep on eating it.<br />
<br />
Off to the shops tomorrow to put that one right...<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-74856971483919599652015-01-23T01:54:00.001-08:002015-02-05T02:05:40.284-08:00Choosing Words with Care<br />
The first thing to note about this week is that Bobby is acquiring decent taste in music. We've never really had 'tot' music in the car (except for in emergency when stuck in traffic jams). This wasn't down to any particular yearning on my part to Hot House my kids to excel in Eighties music. It was more the case that car music keeps me sane and always has done. I wasn't ready to kiss goodbye to that small measure of sanity. My car - my music. The rest of the time I have to listen to Furbies interacting with each other, Mario screeching round corners, This Old Man on the keyboard, The Wiggles... The car is the exception.<br />
<br />
Having said that, if Bobby likes a tune, he puts it on repeat. And there's only so many times that I can listen to A-ha's Cry Wolf without knowing how the wolf feels.<br />
<br />
The second thing to note about this week is that Bobby has been an S.G.B. three times in a row. SGB is Bobby's own term, which has now entered the teaching assistant's dictionary of Bob-jargon. It means Special Good Boy. He gets awarded SGB when he does all his work without fuss. <br />
<br />
This week's the first time he's had any SGBs since the start of the school year, which gives you a rough idea of how Year 6 has gone so far. Some work, a lot of fuss. By the way 'fuss' is Teaching Assistant understatement for 'heckuva scene'.<br />
<br />
Bobby's Teaching Assistant, M'lanie, has a way of putting things that makes even the most heinous of crimes seem quite innocuous. In M'lanie-speak, the Second World War would be referred to as 'a bit of a row'. Using this understatement, she's never made me feel bad even on the days when she's had to ring me up from school.<br />
<br />
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<tr><td style="text-align: center;"><a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrknnQxRTePFZpukAhjugJdGTC7ksRiUujQNnHq6chyphenhyphen5fu587289pjFh1URFw0bj_H87I-X_-YG2BWgMprLXetymLvfCLVufBniv-2i5TU-mPQyzJzDRjlQgQ0t0TvIFIxwLt8DHuV5rU/s1600/war.jpg" imageanchor="1" style="clear: left; margin-bottom: 1em; margin-left: auto; margin-right: auto;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjrknnQxRTePFZpukAhjugJdGTC7ksRiUujQNnHq6chyphenhyphen5fu587289pjFh1URFw0bj_H87I-X_-YG2BWgMprLXetymLvfCLVufBniv-2i5TU-mPQyzJzDRjlQgQ0t0TvIFIxwLt8DHuV5rU/s1600/war.jpg" height="285" width="400" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">JUST CALM DOWN, EVERYONE: Bobby's teaching assistant needs to be a UN Ambassador. She would see to it that all world leaders drink cups of cocoa and live in peace without any unnecessary tantrums.</td></tr>
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It's always: "He's a bit up and down." Up and down arrows in Bobby's communication book are all that I need to tell me that she'll be lying down in a darkened room tonight muttering to herself and reconsidering her profession.<br />
<br />
You can't underestimate the mental effect that words can have on a parent. If you know your son's been tricky, the last thing you need is someone bashing you over the head with the news with a giant verbal frying pan.<br />
<br />
Anyway, I've learnt to read between the lines, and if Bobby's humming to himself at some distance away from me in the playground and not making eye contact when I collect him, I know there will be an up/down set of arrows in his communication book. It's as clear as the guilty look written all over his face.<br />
<br />
If I knew why Bobby's been able to get three SGBs in a row this week, then maybe I could influence a positive outcome in the future. Unfortunately, not even Bobby knows why he has had three SGBs. I suspect it's a mixture of me being calm at home (as Alec is less difficult this week) and the SATs practice papers, which he loves. Exams suit Bobby because of the definite structure to them.<br />
<br />
He may well be granted extra time for his SATs but it's unlikely they'll grant him an extra week, which is what he seems to be requiring at the moment. M'lanie reported that a maths question goes something like this:<br />
<br />
Lanie: "I have two parcels, each cost £1.50..."<br />
<br />
Bobby: "Are they Amazon or Ebay parcels?"<br />
<br />
Lanie: "Amazon."<br />
<br />
Bobby: "What's in them? Is it something I like?"<br />
<br />
Etc. etc. etc.<br />
<br />
I was speaking about this to Tim on Thursday, as I supported him at his warehouse job. Tim is our researcher and packer and has autism. He works for AuKids and our sister company Time Specialist Support (which Tori runs) and he also works in a warehouse for a High Street chain. He has a support worker there and occasionally I step in.<br />
<br />
Tim told me that his problem with maths questions at school was that they didn't look like maths questions, they looked like English. They weren't just numbers - (16 x 4 =) - they were scenarios, like 'I have 5 packet of crisps and 3 friends...' This confused him.<br />
<br />
I thought he had a good point. Maybe we need to take one step back and explain to Bobby that there's a hidden maths question here, and that this is what's important, not what's in the box. Autistic people are not great at filtering out which details are most relevant to a situation - it's an inability to generalise and see the bigger picture that can make them struggle.<br />
<br />
I had a bit of a chat to Bobby about this, but he corrected me. "No - I know it's a maths question. It's not English!" Durrhh mum.<br />
<br />
"So you just like talking about what might be in the parcels then?"<br />
<br />
"I don't really want to talk about it."<br />
<br />
Could it be that I'm exaggerating Bobby's difficulty here and his main trouble is actually staying on task? Which is why he is very very good at procrastinating?<br />
<br />
We'll see when it comes to his next homework.<br />
<br />
This week's homework is making a Box Troll. Fortunately, the warehouse shift gave me a good excuse to walk away with some good materials for this little project.<br />
<br />
All I can say is, I hope it doesn't require too much of a fuss. Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-1974271730345933622015-01-16T08:31:00.005-08:002015-01-16T08:35:35.353-08:00The Prize at the End of the Obstacle CourseI often think of my life with autistic twins as a bit like an obstacle course.<br />
<br />
The starting gun was fired at diagnosis - and we were off! Weaving in and out of appointments, crawling under the net when it came to teaching social skills in a gentle way...jumping through hoops to get them Statemented, crawling through the tunnel of language acquisition slowly but steadily, climbing a tall wall to understand the whys and wherefores of behaviour, with all the slipping points along the way, and splashing through the sensory quagmire that defines Alec's brain.<br />
<br />
Some weeks it feels as if I'm on an obstacle course like this 24/7. You've just emerged triumphant from one little issue and another pops its head up. To use another analogy, it's a bit like playing ping pong by yourself with a few too many balls.<br />
<br />
I felt like this this morning, as I knew that I had to be in two places at once. Drop Bobby off at school, then drop Alec at school, then whizz back to Bobby's school for his first appearance in assembly for about a year. He had made a special request that I turned up, and being late obviously wasn't an option. The whole operation that involves getting Bobby to stand up in front of people hangs in such a delicate balance that a little thing like me crashing in ten minutes late could upset the entire (momentous) occasion.<br />
<br />
As if sensing my hurry, Bobby pipes up in the car: "Mum, what is God?"<br />
<br />
Because that's the sort of philosophical question that I really want to answer at 8.45am on a Friday morning when I have to be in two places at once.<br />
<br />
Still, I made a passable attempt at an answer that nodded to his need for something that wasn't too abstract.<br />
<br />
Flying back from Alec's school, I was cut up on a roundabout by some rude woman who had no idea that my life was an obstacle course. "YOU CERTAINLY AREN'T IN AS MUCH OF A HURRY AS ME, LUV!" I cursed, as my car skidded on two wheels towards the school.<br />
<br />
Jumping inside the school hall, I was just in time to witness the opening moments of assembly and experience the warm feeling that happens when Bobby's little face recognises mine and adopts an 'all is right with the world' expression.<br />
<br />
There aren't many moments when you get to see very clearly how far your little person has come in the last five years - this was one of them. Bobby, the one who was always doing the opposite of everyone else; Bobby, the one who used to fly off the stage the minute his line was over, or who refused point blank to join his friends at the front. The one who not so long ago had dragged a fellow cast member off the stage by his leg...Here he was, introducing the class presentation. Saying his lines loudly, clearly, with feeling. Then leading the singing right at the front, at the top of his voice - remembering all the words, confident and clear.<br />
<br />
And then finally, the piece de resistance...running to centre stage at the end and thanking all the parents for coming (including his mum, who got a special mention), finishing with a deep bow.<br />
<br />
Sometimes I stagger under those obstacle course nets, I climb those tricky walls even when I really don't feel like it, I crawl through tunnels when I've had better days and it seems like everyone else has it so much easier.<br />
<br />
And then he does that.<br />
<br />
And it's all worthwhile.<br />
<br />
<br />Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0tag:blogger.com,1999:blog-491631926142998029.post-20890850937230477752014-12-21T04:49:00.001-08:002014-12-21T04:49:16.332-08:00Where's Your Homework, Mum?<!--[if gte mso 9]><xml>
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Debby Elleyhttp://www.blogger.com/profile/09608279648194978963noreply@blogger.com0