Saturday, 28 December 2013

And A Happy New Year To You Too.....

It's that time of year again where we all sit back and reflect on the years successes's and failures, those moments of personal reflection, the if onlys and what ifs, and the rush of steely determination not to let it happen again next year.  The added pressure we put upon ourselves to set some resolutions, just because we feel we ought to! And the prospect of struggling to achieve them because January is probably one of the nastiest of all months in the year for everything; weather, lack of money and the deprivation of all things warming and comforting because you're on a diet!  It's one of those times that I feel the encapsulation of our 'Bob's autistic world would be a much better place!

His only concern is to ensure the creation of another virtual airline, and the offering of sustenance because he can't possibly leave the hub of all activity i.e. The PC!  Mr Autynary is very much the same mindset, no looking back (because it's already happened), no self reflection (because we just don't do that inward looking thing) and certainly no resolutions we couldn't possibly make a decision which one!

This one I know for sure, I'm on my own!  That oh so familiar saying "If you told me that this time last year I wouldn't have believed you...." is very firmly in my mind at the moment because this last year has been filled with extraordinary events and life changing decisions.  I've shoved myself over 'that invisible line', internally kicked and screamed out of my comfort zone and cried my way out of uncertainty.  I have rekindled my relationship with tenacity and have enjoyed inviting in self esteem along for the ride.

Christmas has been and gone, and we have survived! Just!  Nothing changes for us at Christmas the routine stays the same year in year out, albeit we were a little late this year getting stuff organised due to the renovations.  Our 'Bob' managed to eat his soup at the dinner table Christmas day but the plate of food had to be eaten in another room!  Our 'Bob's presents were as instructed and if I had diverted from the list I certainly would have expected an almighty meltdown, it saves anxiety all round if we just play by his rules during the festive season.

We have entered 'no man's land', y'know the time between Christmas and New Year which gets lost in overindulgence, some rather ancient clips of  a Morecombe and Wise Christmas special and re-runs of all the Christmas films ever made!  Throw in Kirstie's vintage Christmas crafts and everything grinds to a halt.  There is a moment in time where I think is this my 'Black Dog' returning or is this just Christmas anti-climax.  It's been such a long time since I have experienced 'ordinary' or 'normal' I couldn't possibly work it out.  I know that bloody 'dog' is loitering somewhere in the background and if I'm not careful will push its way through the back door.  Anybody who has suffered or is suffering from depression will know that there is always a possibility of it sneaking in when you least expect it; Like an uninvited guest who just doesn't pick up the clues to leave!  Well it's not invited to this party!

Where are we going to go next? Who the hell knows!  2014 is holding surprises and a lot of hard work but I say 'Bring It On!'  What I have learnt from last year is to go with it, hold on, it might be a white knuckle ride in parts, but just hold on!  There is a plan loosely lodged somewhere in the grey matter because we have to have a routine but personally I haven't set anything in stone.  What I will say is that I am not going to close any door until I have fully investigated the opportunities.  I have to keep reminding myself that it's OK to have a look, you are not committing yourself to anything.  I have choices and I am the one who will have the final say!!

And my message for the New Year; Acknowledge 2013 and respect all that happened, and then bloomin' hold on tight for 2014! Don't ignore possibilities or opportunities no matter how scary they feel! And in time of doubt or upset remember there are people out there who will support and comfort just know it's OK to reach out.

To you all a very, very sincere Happy New Year and a wish that 2014 will be a year of prosperity, happiness, hope and loads of laughs XXX

Monday, 9 December 2013

It Wasn't Me! The Reality of living with Invisible Vulnerability.

It's taken me two weeks to write this.  Honestly I have been incredibly busy working in my Parents Forum/Sportism capacity, spending time trying to make sense of the SEN Code of Practice Children and Families Bill and organising a children's Xmas party. Though the thought of writing this particular blog would mean I would have to face the stomach churning fear I have for my son's future again. The realisation that no amount of prior preparation and planning, reassurance and creating a shed load of life rules can prevent the overwhelming urge he gets to do some downright stupid, unpredictable, damaging, dangerous, illegal (Oh yes you heard me correctly and I will say it again), ILLEGAL things.  This is Invisible Vulnerability at its best and I have had the corker of all corkers.  Find me a hill top because I really want to scream!!!

It's difficult to explain to most people about the invisible vulnerability of children on the spectrum, and in particular for those children on the higher end who outwardly look like ordinary children in ordinary houses on an ordinary street anywhere in the world!  I will try to explain about our 'Bob' and his latest all mighty 'this is the best one yet' stunt!!!

Two weeks ago  I got the most unpleasant surprise I have had for a while.  The sheer shock made me feel incredibly sick and for a split second lost the ability to make sound judgement or rationale.  The Postman usually arrives around 10.30am, we don't get a lot of mail because everything is usually fired off electronically these days so it's quite a novelty to get some.  The usual 'Occupier' 'Homeowner' mail on the doormat along with a letter from Tesco Banking.  Now normally I would throw something like this in the paper bin because it's usually junk.  Thank goodness I didn't!!!  There before me was a letter asking me for more information for my credit card application.  WHAT credit card application???? I'm a stay at home mum/carer, what the.... You can imagine it can't you I'm pacing the kitchen, reading this letter again just to make sure I've got it correctly.  I am so mad and the who, what, where, when is going through my head.  Instant reaction and I'm on the phone dialling the 0845 number, cursing that one too because it will cost me a fortune!  

Blooming annoying! I get through to a Customer Service Operator, take a deep breath and go through the story.  I'm put on hold, waiting to be put through to the Fraud Department.  No joy there, nobody is answering so I leave a message.  I'm told someone will get back to me the same day.  So I wait. Nothing. I try again before going for our 'Bob' but by this time I've had several cups of tea and thought about it.  I remember two weeks earlier having one of those dismissive conversations with 'Bob' about the Sainsburys credit card which gives you Nectar points.  'Bob' was doing a good job putting his case forward for Mr Autynary and myself to get one, which obviously we swiftly declined.  I didn't think any more of it, that was until that day.  

'BOB'! What had he done now? Wait till I get him in the car! I'm thinking all this on the drive to school, and for one shocking moment I can't remember how I drove a quarter of a mile down the road because I'm head chunnering.  Amongst a sea of mauve I see 'Bob' making his way to the car, now I  know I have to be careful because one slight whiff he's been rumbled I will not get any ownership from him at all.  So there I am diplomatically interrogating 'Bob'.

"Is there anything you need to tell me about Tesco Banking?"

"Noooo" "What you talking about?" a rather shifty answer and a rather puce looking teenager.

And with slight exaggeration

"I have spoken to the Fraud Department of Tesco Banking about an online application for a credit card which I have no idea about or who's applied in my name, do know anything about it?"

"Well it wasn't me!" quick sheepish answer!

"Well the thing is they have the computer IP address and if I haven't applied for one they are going to pursue the person who the address belongs too, so if I was you  I would tell me what you have been filling in on the Tesco's website because they are calling me back?"

So I then get an embellished story about how he thought he was registering on the Tesco's Direct website, and that he knows not to sign up for things in my name, etc, etc, blah, blah.  And quite frankly that's what it sounded like to me.  I knew he had done it so my mind was now shifted in trying to resolve the issue, and I had better check with a credit reference agency to double check that I'd not had my identity cloned or that the little tinker hadn't signed me for HP on a 737 aircraft!

You can imagine, can't you?  I ask him again if he has done anything I need to be aware of and the answer came back reassuringly "No!" So why then was I surprised to go through a similar situation on the following Monday morning with an OPENED Tesco Banking Savers Account in my name and in a separate envelope a 'Thank you for arranging a direct debit into your new Savers Account' letter.

By this time I'm furious!  Then I had to stop. The wave of emotion slowly makes its way up through my body and I find I am staring out of the window in tears.  I know deep down that a mist of Autism and a wave of ADHD have created a difficult situation, a dangerous situation, a vulnerable situation..... VULNERABLE.  I want to scream and scream and scream.  I have to phone up Tesco's Customer Service yet again with a story which sounds like I've made it up, tricky decisions to make about having my details be put on a credit fraud list so if it happens again I have a little red flag over my name.  Hoping that they don't want to prosecute for fraud, or any other law he's broken in the process.  OMG! I would have to tell Mr Autynary, well that would go down in history as the worse thing possible and it would be ALL my fault.  Never mind 'Stop the World!' I just want to disappear into the ether and I don't want to come out.  

I manage to compose myself when I pick 'Bob' up from school and I am quite frank with him.  By this point he really does know the games up and has to admit to everything.  I don't get an apology, lots of explanation as to how it happened and another reassurance it won't happen again!  Somehow I don't think this will be the case and with all the will in the world and lots of hoping, I don't think 'Bob' can make that promise either, which is so, so, so sad.  I don't think I can ever get complacent or allow myself the time off from pre-epting those predictable or unpredictable events which are yet to bestow their troubles on our doorstep! 

Saturday, 23 November 2013

The Accidental Comic!

And who said Autists don't have any sense of humour... Our 'Bob' doesn't set out to be funny, and he's far from the class clown.  I’d like to say he was a prankster but that would mean he planned what he was doing and more often than not it simply happens! It can be strangely humorous when it does.  I'd like to believe that there is a funny button in his brain which gets switched on in very much the same manner as is the compulsion to press the red buttons; There is no plan and it usually occurs without any warm up!

When I look back he's been doing it most of his life and it wasn’t until he was older it became more obvious.  Our 'Bob' does love a giggle but his funniest moments are usually tied in with his little 'tinker' trait!  The first time an incident caused a memorable ruckus, 'Bob' was three years old.  I'd received the infamous beckoning hand from his Nursery Teacher, and off I shuffle to get a parental grilling.  I seriously don't know how she kept her face straight, I'm confronted with the statement

 "He's spent most of the day in Reception!"

 I'm starting to get somewhat twitchy at this point, and ask

 "So what's he been up to this time?" with a slight head cock to the right.

 "He managed to make the whole class cry!" 

Wow! That was an achievement for a three year old, Crikey what the hell has he been up to!

It transpires that my son had a real passion for switching the classroom lights on and off, and completely oblivious to the cries of his classmates, and as if that wasn't enough, the CD player attracted attention too and he kept switching between CD and Radio - Rock FM it transpires does not go down well with 25 three year olds.  Now I know it wasn't funny for the little ones but how does one child manage to run rings round two Nursery Teachers!

Our 'Bob' likes to save the very best for us, his nearest and dearest.  One year he managed to convince my husband that our town must have had an airport and it was located on the nearby golf course and to prove he was right he pulled up a google maps page and presented my husband with his findings.  Mr Autynary wasn’t convinced but ‘Bob’ presented him with the TomTom, and there it was!  By this point both of us are on the verge of believing this great find. And making a few logical searches on the web soon realised that the little tinker had found a WWII map of a nearby American airbase and had overlaid the map on google and had edited the TomTom information.  He’d been rumbled!

The Selfridges run around was another unpredicted moment.  ‘Bob’ has a passion for buttons, wires, knobs, anything really that is remotely twiddly.  The need to fiddle became so overwhelming one Christmas, the sight of all the timer controllers in the kitchen department sent him on overload.  He managed to run around and synchronize all of said items to go off at exactly the same time!!  All we got was an almighty “RUN!”

I thought he was just having a monumental meltdown and had decided to hightail it out of the store.  That was until I heard an almighty ripple of timer bells going off!!

You would think the safety of our own home would prevent his antics.  Ha Ha Ha! No! ‘Bob’ had been badgering for a radio station and Mr Autynary decided to give him a transmitter.  Not such a good idea.  Somehow ‘Bob’ had sussed out how to transmit the dull set tones of Tiffany “I think we’re alone now! And his own version of Neighbourhood News right in the middle of an FM Band Radio 4 afternoon broadcast! I wondered why my neighbors opposite was standing outside their home with their arms crossed and a few disapproving looks!

Household chores don’t escape his comical touch either!  Most recently Bob decided to fill the dishwasher which was odd in itself because he doesn’t engage in chores!  There he was, busy as a bee and we generally thought he was making an effort, so we left him to it!,  Big mistake, HUGE! Somehow the machine didn't get put on that night and  I put it on first thing in the morning.  When I got back home after school drop off  I am greeted by a sea of bubbles seeping out of the sides of the dishwasher! They were absolutely everywhere!.  Every time I opened the door more bubbles appeared. It resembled a Faulty Towers sketch.  It took me hours to clean the mess up.  

When I  picked him up from school and asked if there was something he wanted to share with me, a little smirk crept over his face

“I wasn't me!”

“ It was the plate with bubbles on!”

What plate with bubbles on ‘Bob’?”

“The one covered in fairy liquid!”

I can only assume that the fragrant green liquid decided to sprout legs and walk itself onto the plate for a bit of a lie down.  You may think at this point that ‘Bob’ isn’t supervised, the comical reality is that he is.  The art of stealth has been well honed!   Even though we chuckle and find it amusing it does highlight a more serious point the invisible vulnerability of children and adults with high functioning Autism!  Never assume the obvious, and never let them fill your dishwasher!

Tuesday, 19 November 2013

Nobody's Perfect!

I am thankful this morning for heavier traffic on the road home, it means I have to take the long way back from school. The radio is on but I don't hear a sound.  I'm concentrating on not crying because the guy in the slow moving lane next to me is staring intently at the car, not too sure whether he thinks he's going to get in a bit of car flirting before the office.  Not with this lady your not!  Today I am having my blip! STOP the world, I want to get off day!!

I don't have them that often but as a mother you rarely have time to think about stuff other than the here and now.  Certainly been given food for thought from my family this weekend, and I'm feeling the after effects. 

Yesterday should have been a very proud Mummy moment.  One delightful memory that is locked in time that you find you boast about when meeting up with people you haven't seen for an age.  I may well do that but certainly not with the same enthusiasm.  You see our 'Bob' was awarded a Subject Award for Science at his school's presentation last night.  In Year 9 'Bob' managed to jump from the lowest set to the top set in one year, now that's an achievement in anyones books but 'Bob', not only on the spectrum and ADHD, is Dyslexic.  He has come on leaps and bounds but it is always a contentious issue, and he has already identified this may stop him from living his dream of becoming a Pilot.  Autism kicks in, ADHD kicks in and the combination does not make for comfortable association.  

The school may well have had their arrangements working like a smooth oiled machine, but for 'Bob' he didn't know what to expect; There wasn't even time set aside to run through with him what he needed to do before the event, so he WOULD know what to expect.  I felt very let down and all I can say is that meeting on Thursday afternoon, well I've added something else to my list of discussion points.

And to top it off our 'Bob' also happened to have his appointment for his 2nd EEG that morning.  The anticipated demand of the day just gripped my Son all weekend, physically and mentally.  I had complaints of feeling unwell and headaches. The reluctance to engage in any external activity fed the anxiety so we just gave in and allowed 'Bob' to become engrossed in his fantasy life on the PC.  The slightest request would trigger an outburst, I have been elbowed, prodded and punched this weekend.  My Boy does not normally have angry physical outbursts like that.  It may be we never see this on a regular basis because of our meltdown management, or it could simply be our life generally does not herald multitudes of social engagements. It was unusual behaviour!

It's not just 'Bob'; I have an overly stressed and tearful final year student, desperately juggling student and work demands and a Hubby who is pacing the floor and becoming incredibly anxious because we have a plasterer in the house!  A situation very much out of his control.

At this point I am folding my arms around my head in a tight self head lock.  Oh there's no point in that, my blip in life will still be there.  I just need to claw my way out of this hole I've put myself into.

The lady in my life Mrs W, who covers my back, who picks me up and supports me when I can't hold myself up, the one who knows when to take me home after I've had one too many grape juices sent me this 

My Xmas Pressie
And the support from Twitterette's is fabulous!  I am going to put on my virtual armour; Might be a little bit clunky; And if you hear a clanky clank It might just be me following you down the tinned veg aisle in ASDA.  So for the next couple of days I will cover up, lick my wounds and remind myself I cannot create 'perfections' in my family's lives...... Who am I kidding I will keep doing that just next time I'm packing the tin suit!!!

Sunday, 10 November 2013

And The Walls Come Tumbling Down Again.....

Life really does give out its curve balls too generous; I do wish it would hold some back for a rainy day!!!  I realised some time ago that having a child on the spectrum I should be prepared for surprises at a drop of a hat.  Saying that I still have moments of complacency and recently I thought we had it all sewn up.  Well certainly for the immediate future! Our 'Bob's curve ball came round that corner so fast it took the stuffing out of all of us.  

'Bob' has suffered with, one can only describe as, 'déjà-vu' type headaches for nearly two years and fast pulse probably longer than that.  The suspicion lay very much at the door of his ADHD medication, and the Professionals seemed to confirm this or certainly wanted it to be so.  We dragged 'Bob' to all sorts of appointments.  The poor lad has been prodded and poked, his head has been entwined with wire and sticky pads, and we’ve even seen our own heart pumping thanks to ultrasound!  It was a technological exercise recording his heart rate and passing the beeps and blips down the phone line, which of course I can now add to my skill base!  So to have this all confirmed at the beginning of the year as medication induced migraines and sinus tachycardia was a relief! Even though the names would conjure up something horrendous they were in all tense and purpose manageable.  Now then that's what we thought......

The assessments were long gone in the past and 'Bob' was gearing up to finish school for the summer holidays in July, and looking forward to a well earned rest.  The end of term is always slightly stressful because the normal routine is off kilter, and the rules become quite lapsidasicle.  This particular day didn't start too well, and my little 'big' man was complaining he felt unwell.  I sigh quite heavily at this point to myself, and the wonder that somehow I could have prevented what happened does flash through my mind. 'Bob' does have a diva side, and I have to deal with the here and now, busy morning and I really didn't want to have to pamper that shenanigans.  I drop him off at school; go back home and start to plough through the mammoth pile of washing.  I had such an uneasy feeling that day, I felt odd, couldn't put my finger on it just something was niggling.  By lunchtime I've pushed that one to one side and I'm contemplating a little bit of retail therapy! No such luck! Mobile phone goes off.  Not many people phone my mobile only school.  So I knew it would be them, and the possibility it was the call to come and collect a poorly 'Bob'.  Guessed well... it was just that.

He looked dreadful, sullen and pale.  I'd never seen him this bad.  I just about get out of him that he's had 5 of these 'déjà-vu' migraines. BOOM! One after another!  If I could just get him home and put him to bed, darken the room and give him a couple of paracetamol he would be fine.  Great I remember we don't have any!  'Lil' is at home that's the answer, I'll leave 'Bob' with her and quickly go and get some.  If only I had listened to the gnawing in the pit of my stomach, and the pop-in thought he may just have a fit!!

Twenty minutes later I get a call that no mum really wants to hear whilst sat in the middle of the ASDA car park.  Our 'Lil' is hysterical, sobbing I can barely hear what she is saying but the words "Bob" and "Fit" jumped through the hand piece and gripped my throat.

"Call Ambulance" I shout, "I'm on my way!"

Don't ask me what I was thinking; I drove three miles like a woman possessed.  I didn't particularly care if I got caught speeding, but I was bothered I didn't kill anybody!  There was a sense of surrealism, and almost like the car was hovering above the surface of the road.  I don't recall any other sound than the car's engine.

 I'm not too sure whether I put the hand-brake on, but I abandoned the car somewhere on the road and ran!  I don't know how I stayed calm, just don't!  My daughter is in hysterics running between the lounge and kitchen, and there is my boy on the living room floor!  I can't thank 'Lil's boyfriend enough.  He had the foresight, and calm disposition to take charge of the situation.  He kept my boy safe and put him in the recovery position when he had finished fitting.  Just in time for mum, 'Bob' throws up and starts thrashing about. The ambulance men were wonderful, 'Bob' was really uncooperative, thrashing around and he just kept on throwing up.  I really did feel like I was the one having an out of body experience looking down at him on the gurney.

We spent over 8 hours at the hospital and with a promise to come back in the morning to be discharged properly by the consultant, we headed home.  The start of another long journey for us!  Poor 'Bob' he was absolutely shattered, and so was I!!

Months have past and we haven't had any more 'déjà-vu' migraines or a seizure but the follow up appointment confirmed that my little man's experience was an epileptic seizure and further investigation needs to be done.  So more sticky pads entangled in his unruly mop! And of course this has an impact on everything else.  Nothing is straightforward!  'Bob's ADHD medication cannot be increased, wears off too quickly now and is having an impact on his afternoon lessons. Sensory issues are increasing and this increases his anxiety well that one is another story! The one blessing is that we have managed to persuade 'Bob' to get back into his high bed; After the seizure his anxiety went through the roof he thought another one would happen when he was in bed so he took his mattress off and put it on the floor.  That's where he had slept since July.

If somebody had mentioned co-morbidity before I'm not sure I would have paid much attention, but I sure am sitting upright and paying attention now.  Never mind the wet fish, get me a cold flannel, feathered fan and a cabaña boy!  We are going to have to make changes in school (another meeting!), changes at home (this one SHOULD be easy!) and in fact changes in just about everything we do.  I don't see another fight on the immediate horizon, I see some blending needs to be done with what we've got it and I feel it will be like putting on a new pair of glasses, seeing clearer the job in hand!  We will have a new set of professionals to become acquainted with, and one service we have never ventured in Occupational Therapy.  'Bob' and I will be putting together a sensory bag not box for the car; with one of his blankets, some food and drink, and a little something which might help calm him down.  We've just got to get over the anxiety of actually having one in the car;

"For goodness sake I'm 15 Mum!"

 Need I say anymore...Teenagers!

Tuesday, 5 November 2013

Pop Pop Fizz Fizz Bang Bang.............

This week has been full of fireworks! And not the pyrotechnic kind either.  My word a certain Celebrity caused a right old ruckus in Twitter land and social media when her remarks on a certain well known radio station shot through the fibre optics like a bullet!  However it has raised the issue about support and parents, and is a hot topic of deliberation and debate. 

As many of you now know I'm really passionate about supporting SEN Parents but there was a moment in our life that I was like a rabbit in headlights and nowhere to hide.  I didn't know many playground mums and hands up I was quite new to it; the Childminder had done the school run before. I found myself shuffling in at the back and everybody seemed to have their own little group.  My Sister had moved into the area and my Niece started the same nursery but that did not detract that I felt I was the only one juggling slippy balls.  Well at the time they felt like dirty great big watermelons!  I was paranoid that I had the 'naughty kid' because our 'Bob' was always on that 'mat'.  The amount of times the hand beckoned from the nursery door and I would hear "Could I have a word!"  The art of eye rolling became my new party piece and I became a master of defensive.  If only there was someone I could have shared a thought, or bounce off ideas but since we didn't have a diagnosis nobody seemed to know where to send me.  So I'd hit the internet!

Every time I thought about our situation I would well up, behind closed doors of course. I knew I just couldn't do that in public or I would just completely lose the plot.  After us just plodding along on our own, I asked the Head if perhaps we could set up a group for the parents of children with SEN in the school.  She shot right across my bow and told me that they wouldn't want to draw attention to themselves and some of them didn't even recognise that their child had a problem!  Feeling somewhat deflated recoiled back into my world.  By some sheer coincidence a lovely lady moved into the area whose middle child started at the primary school and unbeknown to me had another child with Autism.  Whether the Head felt she needed to do a bit of back peddling I don't know but we were introduced and as they say in the movies 'makings of a wonderful relationship!'  Mrs S and I co-run our voluntary group for local children with high functioning autism/Asperger's and have done for a number of years.  Somehow we clicked and she is my Auty best buddy.  We know that each other will just get it no matter how daft it sounds or how intolerable it is; we step in each other's shoes.  Our relationship is really important to us both now.

We hear some horror stories about how parents and their Autistic children are treated, and it is down to perception and badly informed individuals a lot of the time I feel. Not being afraid to talk openly about your child's condition without worry of prejudice or ridicule is something we would all love to be able to do. That's so far short...

What I'd like to think is we can support other parents and ourselves in so many different ways. Don't think that the one nice comment you make to someone on twitter won't make someone's day, or fill their heart with your understanding because the truth of the matter is it probably will make their day.  We can't see down a phone line nor behind someone’s smile so never underestimate the power of united support.  Sometimes a smile is all it takes in the playground....


I'd like to dedicate this post to a wonderful lady in Twitter land who supports so many people with her fantastic Warrior Mum Journeys  Recently she wrote my story and by doing this I found support from so many different people.  I realised that no matter how far along your journey you are it's reassuring to know you are not on the path by yourself anymore.

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 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!