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.