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?

DIINNNEEERRRR YUM YUM!

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.

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!

Stop The World I Want To Get Off!

Where once there was a storm we now have calm....  Or do we.  After a rather explosive week with our 'Bob' and busy weekend walking in a carnival, stripping two rooms and our voluntary groups first session back I am knacky nood!

My head is so mashed with information, thoughts, things to do, the shopping list... I am finding it incredibly difficult to actually get anything tangible done.  I'm not pulling out the screechy violin for sympathy votes but some days I wish the world would just stop...

Yesterday there was a link bouncing around social media regarding a National Service Bill, it caused a bit of a stir certainly in our circles, and after asking a few questions the response was this was a Private Member's Bill which had been put forward for debate but had been objected.  If you read the content the exemptions for SEN were vague, and at first glance unless you are severely disabled or have severe mental health disorders then you would appear not to meet the exemption criteria.

It brought home to me that even though parents constantly worry about our children, and I'm a parent of a twenty-something ordinary young woman with incredible creative talent and all round beauty, that for a SEN parent worrying is brought to a new level.  I mean I could see our 'Lil' doing the time, it would put her out and it would mean that her dream of working in Fashion would be delayed but she would cope. She would be mightily miffed if you sent her out in the field it would ruin her nails and there is just NO style in camouflage fatigues.  In principle the bill is about public service which in reality she is more than capable of achieving and many other young men and woman would be too.  I don't feel that need to constantly look out for the 'what ifs' or 'maybe's' like I do with our 'Bob'.  I'm always mindful that I spend a significant amount of time in fight and flight mode, ready for the next battle to come rocking up!  I'm wearing myself out without actually doing anything.

I mean can you imagine a group of high functioning autists or anybody on the spectrum deciphering the meaning behind a screamed "Double time!" or the response you would get if you shouted "Stand to attention!" Our 'Bob' would be looking for attention so he could stand with him!  And to ask 'Bob' to go out into the community do charity work or go overseas for development activity would be limited by sensory issues, anxiety about security, engaging in decision-making NOT, and polite conversation would cause a right whoha!  My point is that it is not easy!  I find that I make adjustments in our everyday life to ensure our 'Bob' can manage this crazy world we live in, I respect I can't change the whole world or everybody living on this planet's attitude (not through the want of trying!) and that's just life! It doesn't stop me worrying about issues I don't have control over and how it affects us.  So, I will keep wishing for the world to stop some days, I will keep putting on my armour most days and I will keep worrying about my children every day of my life!