Beyond Compare?

I have started reading more blogs from other people who are also dealing with Autism in their own special ways.  It helps in an immediate way because you pick up helpful tips and techniques that you can apply to your own situation, but it also provides an opportunity to engage in what is probably frowned upon in such circles - comparing your child with theirs.

I was reading this relatively new but interesting blog by Julie where she describes her challenges in clothing her son (in his late teens).  It initially piqued my interest because we have had our own challenges with L and clothes.  Usually they are centred around his hyper-sensitivity and the feel of clothes on his skin.  He now generally has to approve any trousers he wears before they are purchased, wears jumpers and t-shirts that are too big (though we don't change them until he has grown out of them in a normal fashion, mwah ha ha ha ha) and sticks to one range of socks which are soft enough for him and have clearly marked out toes and heels so there is no chance of them being twisted.

We have (touch wood) not experienced any dressing failures with him lately, so we natuarally assume we have cracked it.  Clearly, there will be more challenges in the future and we have no clue how he and his Autism will develop, but I do look at Julie's situation and wonder.

I know L's condition is not as severe as Alan's and it is with relief that I expect we will not have to face the same issues as Julie does with her sons to the same degree.  I think this is fair enough to compare in this way as I am preparing myself for the future.

But what about when your child is with other Autistic kids of similar ages, or with his school friends?  I'm sure we all do some internal comparisons at some point, but they are rarely vocalised because society dictates it is rude to do so.

"L is definitely better at maths than x"
"Oh look, L has stopped and is listening but that other kid is still messing about"
"Oh no, L won't stop fidgetting but all the others are sitting still"

I'm sure that with Sauron's eye constantly glaring at your own child, you miss the behaviour of other kids which is probably contradictory to your thoughts, but hey that's what parenting is about.

So what about when other people do it to you?  When other people compare your kid to theirs?  Well, I'm sure they all do it and that's fine.  Yes, L has behaviour issues, he can be aggressive in a disproportionate fashion and yes, there are times when he has hurt someone.  But is he really that different to any other kid?

There are times though when the barrier is breached, when Sauron's eye is drawn across the plains of Mordor and onto another subject, when your child's transgressions mean that someone else becomes the focus of attention, of sympathy and of anger.

This is when your thoughts about someone else, about how they compare with your child can betray you.  When you share your opinions with others.

Unfortunately, in our experience, all that leads to is pain, suffering (yes, I'm in danger of mixing my film metaphors) and anger.

It is natural to compare your child's behaviours to others, and to rank them and decide they are the best at certain things and need to work on other things, but keep it to yourself and do not pretend to know what is going on in that other child's head.  Let the professionals deal with this (Teachers, Doctors, The Parents of The Kid), because wading into the debate just causes problems.

Crumbs, I've ranted a bit today, apologies.  It is dangerous getting involved in the behaviour of kids, regardless of whether they are ASD or simply 'neuro-typical'.

Friends (A multimedia extravaganza)

I'd like to start this post with a brief video, which in my mind sums up male friendship.  Simple, uncomplicated.

(BBFC advisory note:  the following video contains 1 level 4 swear and 1 level 1 swear and a mild drug reference).

My wife and I don't have a huge circle of close friends, probably one hands worth, and we don't head out socialising every night (an evening of Match of the Day and a quiet chat on a Saturday night in my mate's bedsit/shop is as boisterous as my social life gets).  I often wonder how this will reflect on L, because recently he has demonstrated some issues with self-esteem and I wonder whether friends may be the answer.

Isolation is a typical trait of our ASD kids, but L does not demonstrate this in his social life.  Yes, he is very happy in his own company and by no means does he crave social attention to bolster his own self-view, which certainly does seem typical, but he does have a group of friends at school with whom he is very close and enjoys spending time. 

The problem in L's case is not a lack of friends, but what he does with them.  He has a very high set of moral standards (see previous discussions regarding The Rules) and he applies these to everyone he is with.  An example would be if one of his friends was having an argument with someone which was nothing to do with him, he is still compelled to rush in and help to protect his friend, often using a disproportionate response in order to ensure his friend gets his protection, even though unsolicited.

This has become an issue at school where his behavioural standards struggle to match his moral ones.  He still seems unable to balance his response accordingly when he, or someone else, is threatened, instead just going full bore into a fight, or a push or shove, or scratch.

This was raised at a recent meeting at the school where they suggested L needs to learn when his friends fights are not his.  A social story on this matter may help we felt so we are looking into that at the moment.

One suggestion raised by the Education Psychologist was to look into the 'Circle of Friends' initiative, where a group of friends are selected effectively to look out for L and help him to understand what is an appropriate response.  I am enthusiastic about this in principle, but there will be some difficult questions to ask...

How much do they need to know about 'Autism'?

Will there be pressure on them to be more mature or responsible than they are?

Does sharing L's condition with his friends set him up for potential bullying in the future?

What will their parents think about their child having this responsibility?

These are all questions we will work through with the school and the Autism Outreach Team who are now involved in supporting L an the school directly, but it is an interesting point in the process of dealing with L's condition.

So, does the lack of a social life on my and my wife's part have any effect on this, perhaps giving him a general lack of experience as to how adults deal with social relationships?  No, I don't think it does.

And a brief word on best friends - my wife most definitely is my best friend, and I hers, which is wonderful (Sorry to Al, Matt, Phil, Gav and Ben who have all vied for this coveted position at various points throughout my life). 

As Freddie Mercury once put it in the famous song by Queen:

"Scaramouche, Scaramouche.  Will you do the Fandango?"

A wonderful friendly term which I assume refers to his friendship with the aforementioned 'Scaramouche' and asking them to dance along with him.

And I will leave you with a picture of L which I think sums up where he is at.  This picture was taken following a brief sledging expedition.  His sledge went rather quickly towards a concrete block and whilst he was stopped in time and unhurt, he still felt that it was unfair and stormed off across the field.  10 paces later, his mood was sated and he simply started playing on his own.

If he can learn to do this at school, then maybe he can at least take himself away from quickly escalating situations and control his aggressive tendencies?

Thanks for reading.

Oh, I've just realised, the song 'You're My Best Friend' by Queen would have been a much better reference earlier.  Let's just pretend that's what I said, rather than me having to go through the hassle of going back and editing it.  Just between you and me.  OK?  Thanks.

A sad and wonderful brief tale

We have discussed with L about his Autism, even introduced him to The Word.  He is very thoughtful and intelligent so we figured that it would be better for us to have open discussions about it and to be honest with him about his condition.

His understanding is obviously quite basic at the moment but the other day we were discussing his behaviour and how having Autism is not an excuse for mis-behaving, even though it is a 'non-neurotypical' response common to ASD kids.  L commented that he knows his autism makes life a bit more difficult...

Mom:  "Having autism doesn't mean you can be naughty or misbehave"
L:  "I know, I just need to try and control myself"
Mom:  "That's right, and I know it's difficult in the moment, but keep trying"
L: "I will mom.  You know, I am just me and I like being me.  I don't think I would change having Autism even if I could, because thats just another part of what makes me me."
Mom:  [smile].  [sniff].  [wipe away tear].

It was quite a mature thing to say I think - and even though he doesn't fully understand it, his acceptance at 7 years old is a good bearing for the future I think.  Do you agree?

Coming soon, despite this wonderful discussion with mom, L has been having some self-esteem issues lately, so I will be writing a post on that and how you need to keep on championing and being an advocate for your ASD-kid.


I've decided to join a few Google+ community groups to help expand my understanding of ASD and have come across an interesting blog with a few simple rules to deal with Autistic children.

Check it out!

I will be adding it to my links section as well, but I know how you guys eagerly await updates.

Oh, by the way, there is a comment section on each of these entries - I've had one comment in over 3000 views, so please feel free to share your thoughts, agree, disagree, tell me how brilliant I am or how wrong I am.  It is through discussion and debate that our understanding will develop.

Proper post up soon, I'm sure!


Spare me the details

My wife and I attended a training session this week, run by the excellent Positive About Autism group.  The sessions are aimed at parents and teachers to provide some insight into the condition and techniques to deal with them.

One technique which really rang a bell with me will shortly be deployed to help L manage one of the behaviours of autism.  Many may refer to it as verbal diarrhoea (spelt without the aid of a spell-checker no less!), others a hint of obsessive compulsive disorder, but for us it is simply not knowing when to stop talking and this is exactly the point.

When do you know when to stop talking?  Depending on what you read, anywhere between 70% and 95% of communication is non-verbal, it is the shape of your body, the faces you make, your tone of voice.  The autistic child has no comprehension of what goes on inside another person, what they might be thinking or feeling, and needs to be taught how to control this.

A typical example may be lego.  L is a huge fan of Lego Ninjago at the moment, he watches the cartoons, he collects the models and plays with the figures.  He knows it inside out - the characters, their backstory, the models and the baddies and the goodies.  And boy can he share it! 

Me:  Shall we go sledging?   (The snow based activity, not the act of abusing another cricketer at the crease in an effort to distract him from the incoming ball for my Australian/Cricketing friends)
L:  Great!  Yes please, and then can we build an igloo?
Me:  I'm not sure there is enough snow for that.
L:  Well, I can gather the snow from the garden and if that's not enough we can get some from the front and off the cars; we can pile it up into walls and use it as a hide for when we play snowball fights, and then we can put a roof on, then we can make a snowman with a carrot for a nose and raisins for eyes, or maybe stones.  We could use a parsnip instead for the nose, or a stone if we wanted to give him a round nose...
Me:  I'm really not sure there will be enough snow
L:  Well if we get all the snow from the garden we can see how much there is and then get more from out the back or off the sides of the road, maybe....
Me:  Thanks L, let's just see when we get home.

At no stage during this conversation did L look at me to see my eyes roll, my body preparing to go out the door, even me walking away from him as he wittered on.  Nothing deterred him in his quest to impart the entire thought process of his planned snow play.

We learned at the course about a technique referred to in Jennifer 'Toole's Book 'The Asperkid's (Secret) Book of Social Rules' whereby you explain to the child that when explaining something the 'topic' can be thought of as your arm, the 'subject' your hand, and the 'details' are the fingers.  It is ok to talk about a topic to someone ("I like playing in the snow") and maybe even the subject ("I'm going to build a snowman"), but unless you establish the other person shares their interest and wants to pursue the conversation further, don't wiggle the fingers, the details, because the other person may not want to hear about it.

I have yet to read the book to fully elaborate on how this can be implemented, but the idea certainly struck a chord.

Our efforts will be to teach L about eye-brow raises, eye-contact, body language, little verbal cues such as 'hmm?', 'yes', 'I agree', 'go on' etc.  If he doesn't get them, he shouldn't wiggle the fingers.

So we continue to learn about ways to deal with his behaviour, unfortunately, after a fantastic fun time sledging, we were all too cold to discover if we had enough snow in the garden to build anything, but there's always tomorrow.

Drive safe in the snow everyone.



Well 'tis the season to recommence blogging (fa la la la la, la la la la).

I've been a little slovenly again of late, mostly due to plain business, but also because L has been progressing reasonably well.  Well, at least there have been very few new challenges to share with you anyway.

Christmas is always an interesting time of year, and with young children, you can rarely go wrong.  Their excitement is palpable, contagious and wonderful.  At one stage around a week before christmas, I caught them both lying on the rug, watching the 'sleeps to christmas' app counting down the seconds to Christmas!

It also presents challenges, not least because as an annual event, it doesn't really fall into the easily planned and regular activity which an Autistic child relishes.  We had spent a long time preparing the boys for Christmas though - Christmas lists, advent calendars and even the 'elf on the shelf' to keep an eye on them.  Unfortunately, the elf wasn't exactly welcomed with open arms.

The idea is simple - the elf arrives with a story book on 1st December.  The story explains how he goes back to santa each night to report on the boys behaviour, and each morning is in a different place in the house.  Sounds delightful?

Well, clearly the thought of a potential living being in the house, one who can move freely around and appear anywhere, and one who watches the boys with an eerie silence much like the weeping angels in Doctor Who initially provoked a not disimilar reaction when, the next morning, L did not react well to 'Odie's' new location.

Needless to say, we decided to keep him downstairs for the next few days.

After a while, he was welcomed into the family.  L even spent time talknig to him and explaining the 5 gifts he wanted from his list and what he was going to do with them.  I hadn't quite appreciated originally, but very soon it was apparent that here was the dream conversational partner for L.  Someone who wouldn't keep interrupting him because he was labouring the point after 15 minutes of explaining in minute detail.  Someone who wouldn't stop him and say he has already heard it.  Someone who wouldn't say no.  That he didn't say anything wasn't a problem.

Odie wrote a few letters back to the boys and became a very good idea, so I thank my wife for that and, as per Odie's last letter, left on Christmas morning after he had gone home with santa, and leading to the motherload of presents (14 each in the end - they were clearly very good boys), eagerly await next year and Odie's return on 1st December 2013. 

Only 1,213,730 seconds to go (as of writing!).

Special Needs World - aka L'Land

It's half term week and we decided to take the boys away to Legoland for 2 days.  We managed to keep it a secret which was no easy task - not because they were working us out and finding little things around the place, not even when my sister blurted it out over the dinner table, bt because we were excited too and frankly desperate to tell them!

On Monday evening we told them we were going away and would be spending a night in a hotel.

They love hotels - the adventure of sleeping in one room, living together in a small space, sleeping in such close proximity to one another, it is the most exciting thing in the world.  So, they were happy.  Not once did they ask about why we were going away!

En route to Windsor, we still managed to keep it secret up until we were 5 minutes away.  We turned around and told them and they were ecstatic!  It really is worth the wait if you can keep it a secret, to see their faces was fantastic.

So, we went into Legoland and faced what to any unprepared parent of an autistic child would be hell on earth.  In order to get into the place, through the gates into 'The Beginning' where the shops are, took 2 separate queues.  The first to turn our piece of paper confirming our booking into a ticket, and a second to scan our ticket through the gate.  We were blessed as our two boys waited patiently, however we knew that once through the gate, the queues would continue.

Now, not one to miss an opportunity to double your ticket price, Legoland offers a system called Q-Bot.  Q-Bot works by allowing you to arrive at a ride, start Q-Bot and then return when it is your time to go on the ride.  Q-Bot queues for you effectively.

This is the theme park class system, where the upper 'Q-Bot' class get to spend their £15 per person and jump the queues, whilst the lower proletariat wallow in queues for hours on end dealing with impatient youngsters.

An autistic child can struggle in this environment, where the queue presents so many questions and prompts so many regulations as to how to behave.  We were fortunate in that L behaved impeccably most of the time, and besides, he wasn't too bothered about the rides and preferred admiring the lego models and looking forward to the evening in the hotel!

It did get me thinking though - would Legoland consider having a special day for Special Needs Children?  On this day, everyone gets a Q-Bot, there is lots of space and patience all around, people are there to answer your questions and those of your children and most of all, eveyr other parent in the place has experienced a similar set of 'non-typical' behaviours to you, and therfore you are not some social pariah as soon as your youngster lays down a fat tantrum in the middle of the walkway between the shops and the toilets.

There is an excellent local play centre near us, Jungle Boogie in Codsall, and they are going to be trialling a special needs evening where those parents of children with special needs can come and get some peace - or perhaps not so much peace, but at least a sympathetic ear or knowing exchange when those sweet adorable volcanoes erupt.  I realise that this is still a rather open invitation - that parents of children with aspergers may share very little in common with a deaf child, but at least it is a start, a gesture which I think marks a welcome opportunity and I hope that all local readers in the area give them a go.

Anyway, it got me thinking more, why isn't there a special place to go - not just an education centre, or a garden park, but an entire theme park, dedicated to children with special needs?  With special sensory areas - not a room but an entire walkway the size of a roller-coaster.  Pitch black play rooms, monitored by infra-red cameras of course, but where the seeing are disabled, and those without sight are advantaged.  Where there are no queues, where people can book slots on the rides, and also explore how they work, get tours of the roller-coaster underside for those high-functioning autistic children obsessed with how things work, where the roller-coaster can go at different speeds depending upon the disposition of those riding.  How about a theme park where the needs of the child who isn't into the thrill or the adrenaline, but who is bored by Peppa Pig Land, or Thomas Land, or simply too old?

Special Needs World (I'm still working on the name) or L****Land as my son already calls it.

Does anyone have a large plot of land in the Midlands and investors willing to invest c. £50M on it's development?

Let me know.