Jan 052015
 

School holidays are always difficult when you throw autism into the mix. The change of normal routine can be a big issue. Add Christmas to that anxiousness, the extra attention from friends and family, the noises, the colours, the smells… well, I’m sure you can guess, it gets a little difficult at times! Not just for Mini-MaFt though, the anxiousness rubs off onto siblings and affects Mini-Mrs-MaFt too.

Quite simply, while we’ve had a nice Christmas, we’ve also had a fairly chaotic one…

Today Stupid-Dad (that’s me) picked up Mini-MaFt to go to his Monday night club only to find that it doesn’t start up again until next week… Cue meltdown :/ Shouting, screaming, kicking the back of my seat – the plan had been changed without any sort of warning. Suddenly, he went quiet and then after a short time (16 seconds to be precise) I heard a little voice saying “…17…18…19…20”. Just after this Mini-MaFt said really calmly:
“Dad, you know how [autistic friend] has to walk in circles around things to calm herself down or why-ever it is she does it?”
“Yes Mini-MaFt” (sometimes I use his proper name in real life…)
“Well, I count to 20 now when I get angry.”
“That’s good Mini-MaFt, and does it help?”
“Yes. I don’t always count to 20 though, I just count to my favourite number. Which is 20.”

How good is that? Such a simple coping mechanism that clearly worked. He thought of it himself too. In the car. I’ve tried getting him to breath deeply before now and that never helped. Sometimes the best thing is to let them discover their own coping mechanisms and support them in the process.

So, well done Mini-MaFt, next time Stupid-Dad lives up to his name, remember how you cope with it!

image

Feb 052014
 

Mini-MaFt, like me, loves watching films; and he, like me, loves going to the cinema. The social ‘norms’ of the cinema, however, don’t really fit with his autism. Things we take for granted like sitting still, not talking, not telling the whole auditorium what just happened (three times a minute… for 10 minutes) are generally frowned upon during cinematic outings. This certainly doesn’t stop us from going to the cinema, we just have different methods to most people. Most people rush to the cinema as soon as a big film is out – we leave it a week or two. Most people like to have an ‘evening out’ at the cinema – we go to the earliest showing.

These methods have a few benefits:

  1. Cinema tickets are cheaper during the day – the prices increase around 6pm
  2. You generally don’t need to queue (even less so if you order online – Tip: Cineworld tickets are 10% cheaper online and have no booking fee)
  3. A week after it’s release a film isn’t as busy – you can pick the best seats without paying extra
  4. Less busy times means much less ambient noise and less physical bodies in the foyer etc
  5. With an average of 10-20 people watching a film it’s easy to pick a seat away from the ‘crowd’ so any questions and/or discussions don’t interfere with other cinema goers

It works for us, and it’s great.

Many cinema chains have what they call “Autism-Friendly Screenings” of certain films. I’ve looked into these and I’m not convinced they would work well for us. I also think they’ve got a few things wrong. The Dimensions UK website (who organise the screenings) state the following items that make a screening more autism-friendly:

  • The lights will be on low
  • The volume will be turned down
  • There will be no trailers at the beginning of the film
  • You’ll be able to take your own food and drinks
  • You’ll be able to move around the cinema if you like

 

The lights will be on low

Once when we were at the cinema there were a couple of technical glitches. The main one for me and many of the other people who were turning round looking at each other, was that the 3D hadn’t been ‘turned on’ – we were getting the duplicated image on the screen but the glasses had no effect. The other glitch, and one that no one else seemed to notice, was that the house lights were still on, albeit only slightly. This set Mini-MaFt off: “Why are the lights on? It’s too bright. It’s going to spoil the film. The lights are meant to be off in the cinema. It needs to be dark.” I don’t think anyone else noticed that the house lights were still on – but it stopped Mini-MaFt being able to relax and enjoy the film. They did sort out the 3D and lights before the film itself started though. So for us, if the lights are on (even on low) then the autism-friendly screening wouldn’t be that friendly – “they’re supposed to be off, everyone knows that!”

 

The volume will be turned down

“People with autism don’t like noise”. That’s actually not true; it’s missing one word: “some” as in “some people with autism don’t like noise”. If you want a broad statement about noise and people with autism then use this, more accurate, one: “People with autism often have different sensitivities to different stimuli”. Some are over-sensitive, some are under-sensitive and some, admittedly rarer, are both over-sensitive as well as under-sensitive at different times. A low volume will be great for someone who is over-sensitive to sound. But what about those who are under-sensitive to sound? Basically, they won’t hear the film. Mini-MaFt’s situation is a difficult one to pin down – at times it seems he is under-sensitive (things need to be loud) but then at times the slightest noise sets him off (as though he is over-sensitive). There are other factors too, such as what else is going on. At times it seems like the TV is loud because it helps him to concentrate on his one task – watching TV. Most people are able to filter out background noise but this is something people with autism often struggle with. So a cinema where the volume is lower will also affect Mini-MaFt in a similar way – if there are any other noises (people talking, whispering, sweets rustling, someone breathing) then this will make it difficult for him to concentrate on the film itself. Mini-MaFt has a thirst for knowledge; he loves to ask questions about everything – especially new things. If he’s watching a film he hasn’t seen before then he will ask questions and want things clarifying. He will also tell me numerous times what happened. With the low volume this is more likely to affect other cinema goers. So for us, if the volume is low, then the autism-friendly screening wouldn’t be that friendly.

 

There will be no trailers at the beginning of the film

I can sort of understand the reason behind this – many people with autism struggle with the concept of time, and if something is seen then they often need the instant gratification of receiving it. So if someone with autism sees a trailer then that may play on their mind and cause problems as they would want it there and then. Showing trailers could also interrupt a routine: “We’re going to the cinema to see XYZ”, “So why is it showing ABC on the screen then?”. My main gripe with this decision is that, well, it makes it boring. It also removes an opportunity to plan ahead. If Mini-MaFt sees a trailer for a film and likes the look of it he will ask if we can see it – I learnt a long time ago not to make promises I could not, 100% guarantee, that I could keep – so my usual response is “we’ll see”. When we do get around to seeing it he already has a good idea of what will happen in the film (most trailers these days tell you the whole story anyway!) which limits his anxiousness and can sometimes reduce the number of questions asked during the film. It also works as a good ‘social story‘ to help plan both in advance and to discuss afterwards about ‘how the cinema event works’. So for us, if there are no trailers, then the autism-friendly screening wouldn’t be that friendly (and also removes a great opportunity for parents and carers to teach some new social skills).

 

You’ll be able to take your own food and drinks

Well, we do this anyway and have never been apprehended, chased, expelled or banned… But it’s nice to have permission! Having said that, part of our job as parents and carers bringing up a child with autism is to help our children understand the world as it is. It’s like school sports days where “everyone’s a winner just for taking part” – that isn’t how life works; nor is being able to take everything you want, everywhere you go at all times. Why not use the cinema’s rules on food and drink as a social story to teach children about how different places have different rules and that we need to follow them, even if we don’t agree with them? Let them have the opportunity to practice choosing some sweets – in general the range of goodies is far less than in a local corner shop so the choice will not be as overwhelming. But if you need to, break it down for them into a choice of two or three items. It’ll be a good experience, you can discuss it afterwards about how if someone takes a long time to choose then this gets other people upset because they want their turn – again, social stories using situations they are more likely to be able to relate to. And, if all else fails, you have a bag of Haribo Starmix in your coat pocket anyway.

 

You’ll be able to move around the cinema if you like

On a recent cinema trip there were two families sat together, the parents were chattering away and the kids were running up and down the aisles and along the front of the screen. This was while the film was on. I was reluctant to say anything because I know what it’s like to be on the receiving end of questions like “can’t you control your child?”. Mini-MaFt wasn’t so calm about the situation though and the children moving about was very off-putting for him – it was a distraction to him. He also got quite upset that they weren’t sitting down; “you’re not supposed to run around at the cinema” – the rules were being broken and, my word, did he need to make it known! So this feature, being allowed to move around during the film, has two flaws; the first that is will likely be a distraction to other autistic people who may already be struggling to concentrate on the film itself and, secondly, it teaches children that they can run around at the cinema. Remember the sports day from earlier? It’s that all over again – to stand a chance of surviving into adulthood we need to help our children understand the world. Most people will have a natural understanding of cinemas when they first visit; they will see other users sitting down and pick up on those social cues and follow them. Those with autism generally don’t pick up on those cues and need to be taught things that others take for granted. I’m not quite sure how this feature helps to promote an understanding of how the world works. So for us, if people are allowed to walk around, then the autism-friendly screening wouldn’t be that friendly.

 

Following on from these features, the autism-friendly screenings are usually once a month, with a film chosen by the cinema. What will happen if the child (or sibling) wants to see a different film, one that is not shown in the autism-friendly scheme? What practice have they had for going to the cinema on a normal showing? Have you ‘practised’ going to the cinema at other times? Have you discussed what will be different from the other cinema trips? Because if you haven’t then it won’t be an easy experience – and chances are you’ll just stick to the autism-friendly screenings. And I’ve already asked if that really helps people in the grand scheme of things…

I don’t want to seem overly critical of what Dimension UK and the cinema chains are doing – far from it, I think it is great that the needs of autistic people are being discussed. However, I think there is great scope for improvement – such as recognising that under-sensitivity exists as well as over-sensitivity. A large part of what I am saying also relates to parents and carers. I know how hard daily life is with an autistic child and I know how often we all want things to be much easier and to just be able to go out and ‘be normal’ without all the extra planning and emotion that goes into daily activities. It’s nice to have autism-friendly screenings like this (if they suit your child’s needs) but it’s also paramount (pun intended) to remember our ‘job’ is to help our children to grow up with a sound understanding of the world around them. Bringing them up in the autism-cinema-ghetto may make things easy in the here-and-now but what are the long term effects? What if a friend invites them to the cinema for a birthday treat? Do you want to have to say ‘no’ to the invitation? I know that I would rather be able to say ‘yes’ because I know that Mini-MaFt is well-versed in cinema-etiquette, even if he still struggles at times. Last year Mini-MaFt got invited to his friends birthday party at the cinema – we said yes, and he survived. And I honestly believe a lot of that was because he had had ‘normal’ cinema experiences and learnt a lot of social skills from it.

So if they work for you then great but, from experience, I’d highly recommend going to ‘normal’ cinema screenings and using the opportunity to develop a load of life-skills. Perhaps my tips in the opening paragraph will help ‘break you in’?

Nov 022011
 

Yesterday I embarked on my most recent challenge, “No-Beer November”. A couple of years ago I had a shot at “No-Shave November” but gave up after a week because it was far too itchy!

This time I’m doing “No-Beer November”. I generally don’t drink tea or coffee and the cupboards are usually stocked with Pepsi Max, which is too fizzy. How anyone can drink that rubbish is beyond me!

I noticed recently, however, that I would happily drink 2-3 cans of lager 3-4 nights a week mainly because it was there and, as mentioned earlier, I don’t ‘do’ tea, coffee or Pepsi Max. There were no plans to get drunk, nor did I even get drunk, on such a regular basis; I didn’t (and still don’t) class myself as being alcohol dependent or an alcoholic.

So why am I forcing myself to not drink beer for a month? I suppose a part of it is to prove the above point – that I don’t need beer to get me through half of the week. However, if I’m honest, the main reasons are that Wii Fit told me I was overweight and both Mini-MaFt and Mrs-MaFt told me I have a fat belly. It turns out I am vain afterall!

So, wish me luck – I look forward to losing a few lb’s and gaining a few £’s too.

 

 

NB – there is one pre-planned day off later in the month for the PocketGPSWorld.com Christmas Bash. It’s not a failure if it is pre-planned!

Sep 122011
 

A while back I blogged about the possibility that I may have a defect in my MLH1 gene that increases my chances of getting bowel cancer. You can read more info here: Keeping It In The Family. The other month I went for a blood test and a few days ago I got my results.

Now, I’m not going to post my results here because there is one close family member who doesn’t want to know plus you’re probably not that interested anyway! But in the days before getting my results it got me thinking…

Continue reading »

Jan 252011
 

Since October 2006 I’ve been self employed doing web design & hosting with Chris / Salt & Light Solutions, the odd bit of computer repair work and, primarily, doing the day to day admin for PocketGPSWorld.com‘s speed camera database. The latter essentially being a full time job (along with app development, web site stuff, customer support etc). I wouldn’t change it for the world.

Well, as the title suggests, working at home this way has it’s pro’s and it’s con’s…

Continue reading »

Jan 112010
 

On Saturday I called to a Tesco Local while Mrs-MaFt and Mini-Mrs-MaFt were at dancing class. We didn’t need much –  just a newspaper, some cat food and some sweets for the kids. When I got to the till the till operator – hang on… till OPERATOR?! Glorified name or what?! How hard is it to ‘operate’ a till?! Scan – Beep – Scan – Beep – Card – PIN – Kerching! Anyway, I digress, the ‘valued Tesco employee’ then asked if I was “stocking up for tonight’s snow”. Hang on, I was buying a newspaper, some cat food and some sweets – just one of each item. This is NOT stocking up! To me, stocking up implies buying a lot of each item, not just one!

More to the point, do I actually LOOK like someone who lives off of cat food and sweets?

Oct 282009
 

I would dearly love to show you some video from Monday’s Green Day gig at Sheffield Arena however my iPhone was stolen and was last ‘seen’ in Liverpool, near Kensington Gardens…
Find my iPhone
On Sunday night my car was broken into as well. Nothing was taken but it did mean I had to pay for a replacement window and the hassle involved.

Continue reading »

Oct 052009
 

Geocaching.comThose who follow me on Twitter will already be aware of my antics this past Saturday afternoon. Me and Mini-MaFt went geocaching – now if you don’t know what it is then check out the geocaching website but, put simply, it is a GPS/SatNav-based treasure hunt. You get a set of coordinates from the website along with a title and a clue and you have to find the ‘treasure’. Groundspeak, the company behind the geocaching website, recently released an iPhone app which links to the geocaching website allowing you to find local caches, see the hints and read other peoples reports on how they got on.

Armed with my iPhone, a couple of goodies (you can leave items for other geocachers in some of the larger caches or do swaps for items already in the box) and a thick coat (it was blowing a gale, but at least the rain had stopped); me and Mini-MaFt headed out across the field towards our local alpacca farm for our first ever cache. Continue reading »

Aug 182009
 

Working for/with PocketGPSWorld.com has it’s perks: various satnav’s, navigation software, new devices & gadgets, best speed camera database and, erm, ahem, random days off to go to theme parks….! I’ve got a few navigation apps on my iPhone and thought a trip to Pleasure Island, Cleethorpes would be a good time to give them a proper road test. To be honest I’m still not fully convinced that the iPhone is the right platform for navigation software (I much prefer Windows Mobile or (my limited use of) Google Android for these types of things) and so I took my ‘normal’ TomTom with me too.

We were running a bit late yesterday morning so I used the TomTom on the way down as it was easier to set up quickly – I couldn’t find my iPhone holder and charger right there and then! For the return journey, however, I planned on using a mixture of Sygic, CoPilot and iGO to get us home safely. First up was CoPilot which loaded nice and quickly but then seemed to crash on the main menu along with a bit of a graphical glitch. No problems I thought, kill the app and start it up again! Then the fun began, CoPilot decided to hang on the splash screen and just would not load. Next up I tried iGO which, too, hung on the splash screen – not the best of starts… Finally I gave Sygic a shot, fearing the worst and preparing the TomTom for a return trip. My fears were not compounded as Sygic started up and ran with no issues. Later on I gave iGO another shot and it was fine but then when I tried CoPilot it still hung on the splash screen. I actually think the initial problem with iGO was due to memory issues as I tried loading it as soon as CoPilot had crashed out on me.

Anyway, my point being, had I only had CoPilot with me I would have been rather stuck. The only way to reinstall it is to remove it from the iPhone then reinstall it via iTunes on the PC – now, if I had been away for a week or two and that happened…! Thankfully today I had a back up (I actually considered taking only the iPhone). I find I have started to rely on technology a little too much and I may have to dig out my old paper map as a contingency plan – if one of my actual satnav’s packed in while dodging camper vans through the hills around St Ives I doubt my homing instinct would serve us particularly well!

Jul 312009
 

Cerrie BurnellBack in February this year there was uproar from some narrow-minded parents about the employment of Cerrie Burnell for CBeebies. I won’t go into all the pathetic comments that were posted in various forums but basically some people believed that a TV presenter with no forearm would scare children away from TV and she was only employed to ‘make up numbers’. Utter nonsense if you ask me… Anyway, 5 months on and Mini-MaFt has finally noticed this so-called hideous-scare-machine-of-a-TV-presenter’s ‘disability’ and, contrary to the idiots  speculation, he wasn’t scared, he didn’t run away screaming and I highly doubt he will have any nightmares about it either. He simply said, in a perfectly child-like way, “Eh? Where’s her hand gone?”. And that was it! It didn’t take very long to tell him that everyone is born different and that when she was growing in her mummy’s tummy her arm didn’t grow properly. Nothing else was asked about it so I really can’t see why so many parents were so scared of their precious little darling’s seeing someone ‘different’ to them… I wonder if the same people complained that there’s a black TV presenter on CBeebies too…?!