Tuesday, 29 October 2013

Can We Go Now?.....

How many times have we heard this one!  I don't know about anyone else but this one is an absolutely favourite phrase with our 'Bob'.  The outside world harnesses so many irritations for him given a choice he just stays put, and the more he understands about his sensory issues the less compromising he is becoming.  My worry is that he will become such a recluse that the fantasy world will take over the reality of living.  'Bob' has this ability to completely detach himself from the real world and pop into his parallel dream life like he's going to get a pint of milk.  Our latest acquisition is a game called Victoria II, and I believe it has something to do with taking over the world one country at a time through virtual battles.  His spare time and attention is taken up by this blasted game at the moment.  So when I just happen to mention we have a family wedding to go to this weekend I am presented with a number of demands!  Negotiations have taken place and no hostages will be spared!

This always happens whenever we have to go out.  I have to add at least an hour or two into the plans because no amount of planning can make adjustments if he is just not in the mood!  The slightest thing could set him off; the computer stopped working in the middle of the game; the toothbrush isn't where he left it; I've given him the wrong cereal; the sun is the wrong colour... just about anything! In preparations for the trip we bought an iTunes voucher for the iPad, installed a similiar game to Victoria II and made sure all technology was fully charged and deposited the charger in the car cigarette lighter in anticipation.  Great! No excuses for not being able to take over the world! 

Now for the outfit.  Like so many other children on the spectrum, 'Bob' has particular sensitivities with some textiles and items that are too tight or restrictive.  So the latest fashion trend for young men's suits being well fitted is going to be an obstacle but I'm usually up for a challenge.  I want 'Bob' to look like all the other young men who will be there and what I don't want is for his clothes to become the neon sign that say's he's different.  After a very successful shopping trip one on trend suit, shirt, tie and really trendy shoes have been bought with the promise that the trousers would be tried on at home because 'Bob' doesn't do fitting rooms either!   And all on the eve of the wedding because world domination has to take priority and we only have one shot at it.

I'd organised the morning itinerary and the family all had a good idea where we had to be and at what time. For once 'Bob' is slightly giddy; so I am thankful I had left giving him his ADHD medication till the last minute.  Now by this point there's no meltdown or screaming abdabs, everyone is relatively chilled and the journey is without incident.  'Bob' had been briefed on the type of wedding service, he had been to the church before so that was a bonus and to cut a long wedding short, it all went well.  The fact we didn't engage in the social chit chat is neither here nor there, most of the family know 'Bob' anyway.  Thank goodness! Mr AUTYnary finds these events excruciating and the social chit chat doesn't float his boat either.  The pair of them look like a couple of bookends standing on the peripheral of the group, completely disengaged with the process.  As usual we have arrived at the reception before anybody else; it's a time thing ensuring we have got there with plenty of it to spare just in case!  

The wait for food was even bearable thanks to an apple. How many unsuspecting photographic victims can one person take pictures of from the dinner table? 64 to be exact.  Take a look at the best one....

Anybody for a selfie?


On the home straight now.  We've got to the dessert without any intervention.  Yayyyy! This is looking promising and could be a good night.  There I am looking very pleased with myself and WHAM! 

'Bob' - "Can we go now?"

Me - "Nope we have to stay a little bit longer."

'Bob' "Why?" "I've eaten my dinner and I'm still hungry?" "I need to get back or I won't have time to finish my battle."

Me - "It's rude to just go after food, you have to stay for the speeches and cutting the cake that's the rule."

and off he wanders.....

'Bob' - "Can we go now?"

Me - "Nope we have to stay a little bit longer."

'Bob' - "Well I'm not having that rule when I get married, I'll go when I'm ready!"

What do you say to that one?  'Bob' manages another couple of hours of "Can we go now?", and Mr AUTYnary manages to drink my share of the free wine (I'm designated driver for the night).  Not too sure who got to the car first though 'Bob' under his own steam or Mr AUTYnary pushed along by the high wind.  In the world of "Can we go now?" I can safely say that was a good night!  It's not always that easy and I'm mindful that all our trips aren't as successful.  The thing is I will keep presenting 'Bob' with these jaunts no matter what just to make sure he doesn't disappear into his version of the universe.  I fear I would lose him forever.

Saturday, 19 October 2013

Anxiety Overload!

I was so cross, well in fact I'm still cross, at the beginning of the week!  The idiot that broke into one of the cars on Monday night does not realise the anguish and anxiety overload we are experiencing right now, and for what... £3!

Our 'Bob' along with so many others with autism suffers badly from extreme security anxiety.  This usually manifests it's self in THE most extreme response.  Within seconds of him hearing about the break-in I had to listen to the chunnering, I had to give a detailed report of the crime scene and had to put up with "I told you so" and "You should have followed my car parking plan for the drive, Mum!"  Yes, 'Bob' did produce a car park plan for our drive.  It makes it sound like we have an ENOURMOUS drive, we don't it's just a good shape for packing in the cars.  Of course 'Bob' then spent the next hour setting about completing a security plan, and reminders for the family which he promptly put up on the wall by the front door.  If nothing else 'Bob's thorough.  It's not just that though, it's the mental impact this has on him.  I thought we had dealt with checking doors all the time and the perimeter of the building before bedtime.  This episode has reared its ugly head again this week.  I have been reassuring him all week and it's completely exhausting.  The slightest thing can set him off and I have to pick up the pieces!

We already struggle getting 'Bob' out of the house and the uncertainty that comes with other peoples actions will push him back there.  I try and explain it to people but it is an emotion that is incredible difficult to describe from an autistic child’s perspective.  'Bob' can't break it down for someone to understand and I can only surmise.  I have to go on his actions and listen to what and how he is saying things.  You can tell he battles internally with the core sense of insecurity and trying to deal with it himself creates chronic anxiety too! No win situation whichever way we look at it!

All we can do is breakdown the information that is causing the grief and strip it back to its bare bones so to speak.  I try and do this in a calm environment usually surrounded by his precious things in hope the familiarity will give some comfort.  When 'Bob' goes to the extreme I have to remind him of the reality of life.  For instance with the car, it was parked on the opposite side of the street, close to a hedge, no street lighting and was quite close to the path.  It was an opportunist, so likely to be some oik roaming the streets just looking for mischief, the fact that the car was still there and the contents of the car placed on the front seat would suggest this too.  It is key breaking down the information in digestible pieces.  It will be a number of weeks before we can stop revisiting this.  Let’s hope we don't come across something else that takes up the anxiety mantel, and I have to start all over again!

Friday, 11 October 2013

Drama, Drama, Drama!

Everyone loves a critic! Especially my son he usually is the critic. In 'Bob's quest to find out what he is going to do with his life he has decided to have a Plan B! OMGosh! Head in hands, shake head from side to side. Well he's gone from one extreme to another I can tell you.  Plan A was to be a super Engineer, fantastic pilot, leader of his own country and Master Lego Builder! Now Plan B is to say the least confusing for me because our 'Bob' doesn't generally gravitate towards the limelight by choice, it might unintentionally happen when he is trying to ram me with the shopping trolley in front of a crowd of happy shoppers!  So when he announced in the car that he wanted to be an Actor, yes ACTOR! The choice words were 'gobbed-smacked' and 'Well I never... .’  

We had tried a drama group without much success when 'Bob' was about eight years old.  It didn't last long 'Bob' was scaring the other children by running round in the opposite way and screaming in their faces. The sweet natured Drama Teacher was really polite but after telling me the second time how the other children didn't like coming because he was scaring the living daylights out of them it sort of put me off.  I didn't want to get to the stage where we were the ones asked to leave.  It was still incredibly raw having a child with autism, and my thick skin wasn't quite thick enough.  

'Bob' informs me he's doing this because I said that he needed to do other stuff!  The fact I said that months ago has nothing to do with it but we will go with it. I know it takes some time to process information but bloomin 'eck 'Bob' that's ridiculous!  I still worry about sending him off into the unknown, his behaviour can be so unpredictable (that's the ADHD) and he can appear to be such a Muppet sometimes (I can say that! I'm his Mum!).  Generally it can be OK until he opens his mouth and says something completely irrelevant or odd, then everyone identifies that this one is going to be tricky!  So very carefully I pick out a drama group.  Well actually I'm slightly biased because it's the local performing arts academy and I go there once a week for my 'get away from it' hour of self indulgent adult musical theatre singing class! I know the teachers, the layout, some of the children who attend and it's a really great family spirit.  Hey they've put up with me for nearly a year!  The only prerequisite was that he didn't want to do any singing like me. In his own words "I don't want to do that cat’s chorus!" Thanks Son, love you too!

Well we've managed two weeks and all is OK with the drama world. Fingers crossed! I really never ever thought we would embrace the world of 'Luvees' and 'Darhlings'.  I loved performing when I was a kid and I so wanted one of my children to follow in my footsteps and beyond.  Our 'Lil' didn't show any signs of that side of the camera preferring to be on the other side and creative in the fashion world.  It didn't even occur to me to give 'Bob' the mantel and resided that it would have to be shelved until the teeny tiny patter of grandchildren's feet!  There is hope yet... I can see it now "To be or not to be, that is the question?" "Well actually that IS the question...to be or not to be what?" Could you imagine how long Macbeth would take!

Monday, 7 October 2013

What Have I Done With My Life?

I do wonder some days what goes through our 'Bob's head.  I mean he does come up with some weird and wonderful ideas but this one came from left field.  As most of you gather our conversations usually take place in the car to and from school so don't be surprised this one happened after I had picked him up.

'Bob' "I've been thinking..."
Mum "That's dangerous!"
'Bob' "What have I done with my life?"

I'm trying not to avert my eyes off the road but one eyebrow lifting stare to the left is required at this point...

Mum "what are you talking about, you are only 14"
'Bob' "well, I mean I haven't done anything I can remember"
Mum "you've done loads of stuff, you've sat in the cockpit of the concord, been on a train simulator at the engine works, been on lots of holidays, building a plane in the garden” Yes that last one is real!
'Bob' "yeah but what have I done with my life, I need to start thinking about my life...”

How do you respond to that...? I mean I ask myself that question all the time self evaluation doesn't come easy.  I'm hopeless at it.  I'm curious to see how he does manage it.  For 'Bob' the inability to make simple decision is problematic in everyday life so to make such huge whoppers for a life plan is going to be interesting.  His mindset and latest obsessions tend to dictate what he and we do next because unwittingly our lives follow his. Our routine for everyday tasks is firmly set, clothes in set order, when and how we eat breakfast, the morning constitutional, even down to the contents of our lunch box doesn't change day in day out.  How is this young man going to build these into his life plan? Quite simply that is his life! Just because he does things quite rigidly and methodically doesn’t mean it's wrong. Frankly, if life was that orderly most people would find that they have more time on their hands.  Without him realising he gets time management down to a fine art.  It's me that pushes those boundaries.  I'm the one flying around by the seat of my pants! Don't get me wrong I'm not scatty all the time.  I love lists! And boxes and a home for everything.  Maybe he's got something we could bottle!  I still have to make the decision about which clothes get laid out, the contents of the cereal bowl, reminders about cleaning teeth and washing his face though.  If you asked him coco pops or weetabix he would point in my direction “she’ll tell you” would be his response.

Ah and then we have the inability to accept change even if it’s in an orderly fashion.  It causes unhappiness and anxiety which can reach astronomical proportions verging on exaggeration. Then we get the shut down so nothing gets done.  Too many obstacles get placed in the way, and you might as well say goodbye and 'san fairy ann' to sound reasoning and logic! And then we stall!

OK he's 14 some may say too young to be thinking so far ahead, should be enjoying childhood! We don’t have that luxury of time at all because everything takes an age to plan and because of those dreaded obstacles it could take us until he's 40 to get where he wants to be.  'Bob' has so much going on in that little head of his, so many ideas, dreams, lives he wants to live I don't want him to lose that spirit in the process.  We are here to guide him and help him to achieve them; some are so outlandish; at the moment he is planning on buying his own island and creating his own country!  Now you and I know that it's not that straight forward, but in his head it is.  Mr AUTYnary and I will go along, helping him find out information, even create his own family crest.  Knowing all too well that at some point we may have to bring some of those ideas down to earth with a bump!  I want him to embrace that entrepreneurial gumption, I want him to have those opportunities that could see him reach those dizzy heights of success, and I want him to have those chances!  Even if it means I have to don on a life jacket and climb into a dodgy looking motor board dingy, travel the treacherous Irish Sea and climb into a tent on some windy remote uninhabited island off the Irish coast just to find out that setting up your own country might not be a good idea after all!