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!!!

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.

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 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!

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!

Food NOT So Glorious Food

Food and the art of eating it has always been a contentious issue in our house, long before the children came along.  Before I had my epiphany about Mr AUTYnary and his undiagnosed Asperger's I used to think his attitude about food was incredibly unreasonable at times, spoilt, snooty and downright stubborn and when I presented him with a home cooked spag bol and he would only eat the bol! I really did become quite paranoid.  He would claim that the pasta was like eating slugs all slimy and I often thought this was quite simply an exaggeration.  So many times he used to remove himself from the dining table because the noise of crunchy carrots was like someone running nails down blackboard, or the over dramatic outbursts at the prospect of crisp packet rustlings whilst watching films.  The rigidity and inability to compromise was so frustrating to me the dispute would go on for days.  I had been brought up with the attitude you eat whatever was put on your plate or go hungry! I wasn't very sympathetic!  That was until I had children!

Easy job with our 'Lil' she would try anything, hardly any resistance and loved veg!  I became quite complacent when our 'Bob' came along that was until I stopped breastfeeding and tried to bottle feed him.   Ewww icky baby! Projectile everything...and I mean everything, everywhere... I didn't know one small baby could hold so much.  He must have been holding onto more than his own body weight....Poor mite he suffered dreadfully with eczema and asthma, and ended up only tolerating baby soya milk.  By the time he had reached solids and beyond we had a limited palate of taste  - weetabix or ready brek, chicken nuggets, loved the taste of fromage frais though we had to be careful not too many, raw carrots if we were lucky, bread and butter, sultanas (they were 'sweets') and if we were in the mood mashed potato.  Over time we have added to our list but we are not experimental and have been influenced by Mr AUTYnary's own food issues.  

Our 'Bob's sensory issues include food smells - that’s tricky to deal with when your 30,000 ft in an airplane and he's screaming he wants to get off!  'Bob' can't abide anybody eating in close proximity so eats on his own even on Xmas day too! We don't seem to have an 'off' button either so the consumption of a treat, biscuits say, can go on until we have eaten the entire packet in one sitting!  Quite recently I entered the dark hole that is 'Bob's room only to find the empty packet 500g packet of sultanas hidden under his pillow.  I'd only bought them the day before!  I have tried to ask him why he does it but he gets agitated with me, so I've just accepted it one of his 'things' and I will just have to watch him carefully.  Pretty difficult though, we also can be very sneaky, and 'Bob' has developed KSM - kitchen stealth mode!  So think of the theme tune to the R Whites Lemonade ad...secret lemonade drinker.... we've got a secret kitchen raider!

'Bob's medication for ADHD doesn't help; it suppresses appetite, so when it's worn off he's got the munchies.  I cook most meals from scratch because I'm fully aware of the necessity of five a day, but it’s tricky when you have a child who has so many issues with food.  Until you start to really think about it, I didn't pay much attention to how much these issues control our lives.  Mr AUTYnary and our 'Bob' don't seem to have a food clock either, so if left to their own devices, well quite frankly, they don't eat!  Our meals out depend on whether their menu contains cheese burgers! Or how close the tables are! Our 'Bob' has cooked at school under supervision quite successfully, but when we've tried it at home he is reluctant to follow recipe, or has this urge to be creative!! Usually part cooked with some decidedly dodgy mix of ingredients.  When I ask him about it, his response is that he just wanted to see what they would taste like....think he's been watching too much Heston Blumenthal!  He was quite keen to get his hands on some liquid-nitrogen....the answer was NO!

So as 'Bob' moves into adulthood I take a long hard look at my Husband and our foodie past, because within it is my sons foodie future.  Can I change it, not likely but I've learnt lessons, ways of coping and dealing with the anxiety, a life of strategies and hope, hope that at some point repetition will pay off and he can remember to eat breakfast before 10!

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!