Yeah, but is it art??

Sorry for the delay in posting but it's that time of the year again.

I spent 6 hours constructing some kind of rabbit biscuit barrel, hairdryering every layer of papier maché for speed, spending 15 euros on resources (grumbling to myself - 'I could've bought one for that) and neglecting the healthy food regime of the kids, throwing them a 'KitKat' to share for lunch while avoiding throwing up on the aforesaid work of art as I nursed an increasingly bad migraine.

'But Why?' I hear you ask.

The last minute rush to make sure my number one son passes the year.

This was art. We've done a few weeks of tutoring him too. He's already failed maths and can't afford to fail any more subjects. If he does, he repeats the year, which is de-motivating, humiliating and a waste of time for someone like my son who doesn't see the point of doing most things once, let alone twice.

If it was left to him, he would have given in something resembling this -
Take one rabbit.
Put it in a cornflake's box.
Reverse a tractor over it.
Wrap it in about 3km of sellotape and.......... 'Tadah!'.

In fact, when I saw it the night before it had to be given in and before I knew it was meant to actually resemble something, I thought it was;
a) a metaphorical physical expression of his inner turmoil,
b) the new Damien Hirst or
c)rubbish

I cried a bit inside at the pathos of this 'creation'.
After looking at my son, with a plaintive expression which communicated the single word 'Why?', he just shrugged his shoulders and mumbled with adolescent world weariness - 'I can't do it.'
'But what is it meant to be, son?'
Due to my inability to decipher the abstract construction in front of me which apparently had taken him 6 hours (although, we later found out that 5 hours 55 minutes of that was spent playing with plasticine), he kicked the sideboard and flapped his arms in frustration, yelling,
'SEE - I KNOW IT'S NO GOOD'

So, I rescued him. For the sake of him getting through school. When he saw the end result, he kissed me and, as chuffed as buttons, took it into school.

He got a '7'.

Can you believe that? A '7'???? After all that effort??? It had floppy ears and buck teeth and everything.
I'm gutted.
At least it's a pass.

I'm beginning to wonder if the original 'Rabbit Incarcerated in Crumpled Cornflakes Box and Wrapped in a Never-Ending Stream of 'Sellotape'' wouldn't have got a better mark....

Frozen Peas and Indignation

This morning I decided to boycott the local supermarket.

I have arrived at this point after a catalogue of misdemeanours. I am a wheelchair user and I am utterly sick and tired of having to ask for assistance from sulky staff when it is a question of getting round the damn shop.


It's not a big thing in the scheme of things, I'm not homeless or widowed or alone or having to scavenge for food to feed my kids. I know I'm fortunate. I don't get down about my illness often, it's just that when little things keep happening they become systemic and lack of disabilty awareness in people around me eats into my energy and self-esteem. I am a lone angry person harbouring a grudge and really I wanted to make a big placard saying 'Heellooo!!' and maybe hit the manager over the head with it while chaining myself to the trolley park in protest. Instead I, naughtily and stroppily (not that anyone was an audience to my righteous anger), backed out of their one-way entry system as the entrance - yet again - was blocked by crates of fruit. I was in a bad mood already, probably due to the fact that chocolate should be free on the National Health System - but it's not (potential vote winning policy there...).
I can only get into 4 shops in my town - 2 are bars (there must be a god - make mine a double), one lovely stationery shop which last year installed a ramp and an automatic door and the afore-mentioned supermarket which offers a depressingly challenging experience at the best of times. As you root through produce checking the 'eat by' dates, scouring for signs of mould on cheese and meat and potential salmonella and botulism and as you keep your eyes peeled for open boxes where the contents have been taken in a cunning attempt to beat the alarm system (the funniest is when you can follow the trail of open cakes, open drinks and open crisps and realise that someone's eaten a meal there - brave souls!), you realise that these experiences make you question your own optimism. I realise that I'm always waiting for the supermarket to get better... in fact, I probably spend my life waiting for things to get better, meanwhile life and the 'eat by' dates in the supermarket are both expiring rapidly. So, I'm taking charge. I've given it plenty of chances to improve and now it's just one insult too far - I can't even get in the shop to suffer it. It's like being annoyed when you can't be tortured due to lack of diability awareness and the 'rack' isn't situated on a hydraulic bed to facilitate transferring.

'What if I WANNA be tortured??'

Anyway I have told the kids that if we can't buy it from the freezer shop (which luckily sells bread... and cake), then we aint eating it. I am empowering myself and taking the moral highground while simultaneously sucking on a frozen pea.

And it tastes good.

The monotony of love

'To bother persistently with trivial complaints' - To nag.

I never did want to be classed as a 'nagger', but it seems to be a role I'm slipping into with ease which is a tad worrying because the next stage up from nagging mother is tyrannical mother-in-law and I don't know if I have the energy for that - let alone the inclination... but...

Every day is like the film 'Groundhog Day'.

My son wakes up every day with his memory seemingly completely wiped from the day before, which is a trait I would love. As I'm still stinging from a heated conversation the day before about the merits of putting clothes in the washing basket rather than leaving them to amass on the bedroom floor for so long that they form a small uprising, grow legs and walk to the washing machine of their own accord to escape the pungent aroma of festering underwear and clothes, he is blithely re-starting life stuffing the cutlery down the sides of the settee (again) as he un-stacks the dishwasher not wanting to sort out the knives and forks into their particular spaces in the sideboard drawer.
'Aah! I hear you say, 'why doesn't she just give him two sets of underwear and clothes, so he is forced, by mere clothing deprivation, to put them in the wash?'
Those of you with children like my beautiful but challenging son will be knowingly scoffing at that concept. I tried it, proud of myself for being so clever, only to be outwitted by the latest member of the ‘Guiness Book of Records’ in achieving the longest amount of time the same pair of underpants has been worn by one person – my boy, who thought that spraying his clothes with air freshener cleaned and sanitised them at the same time. If only...

Nagging, lists, notes, contracts of behaviour, self-esteem sessions, counselling sessions, bribery, affirmation, punishment... threats of uploading a photo of his bedroom to Facebook - I have spent years reinforcing every day basic rules hoping that one day some will sink in. And some have. But mostly every day, even now at 15 years old, involves standing over him as he brushes his teeth, washes, does his homework, etcetera, etcetera. I don't mind doing it so much now, 'nagging' scarily rolls off me automatically with less exasperation. Now that we have a diagnosis, I understand him more. Working against us is the unreasonableness of adolescence which doesn't help. In some ways I'm glad we didn't get the diagnoses of ADHD and PDD-NOS earlier because, who knows, we may have given up and just accepted his behaviour as typical instead of constantly reinforcing basic concepts. We just keep going, trying not to keep score - there's no merit in counting - it would just overwhelm me. Every day, the monotony of 'nagging' is only relieved by knowing this one thing; behind every 'nag' there is a subliminal 'I love you so much - I want to help you to grow to your full potential and if that means me constantly reinforcing basic rules, then so be it but I'm not giving up on you.'.

I 'really' tell him I love him most days, scared he'll forget that he is loved in his 'Groundhog Day' world.

I realise that I tell him that I love him through 'nagging' about 30 times a day.

But who's counting?

Dysfunctional? Look at your car...

'I don't ever want to go out with you again... so don't ask me.' - serious teenage rant after day trip to Barcelona'.

When do you stop forcing your teenage children to go on family excursions with you?

They would say 'now.'

We want them to come, but more than that, we want them to enjoy being together. Part of me knows that the reality of a family trip will not live up to my aspirations of being like the Waltons but without the gingham.
I blame the car.
Things really are stacked against us from the off regarding a happy day out. Having a moody teenage son who is built like Hagrid doesn't help, combine that fact with our car, which is probably the smallest family car you can get without going to a car dealer in Oompa Loompa land and which is only a 3-door hatchback. The main reason for buying a tiny car with no access for the passengers at the back was to discourage them from opening the doors at high speed and throwing themselves out, shouting 'Nooooooo! We're not with them...'.

Normally the kids have to endure their parents' singing as we drive along. We make sure it's loud and raucous so they can't drown us out with their MP3s.
After half an hour of precision packing to get them in the back of the car, (A tricky procedure as we have to strategically position our car-sickness prone teenage daughter and our anxiety ridden 9 yr-old, who really does not want to be vomited on, which results in our clinically depressed Hagrid having to sit in the middle with his feet propped up and his knees up by his ears, bemoaning the fact that he doesn't suffer from an ailment which would ensure his place in a 'window seat'.) and 2 minutes of being 'on the road', they are forced to endure our latest rendition of a Lady Gaga song but with made-up words - normally about happy families or sulky teenagers. It's at this point, 'Hagrid' is made aware of the advantage of having your knees either side of your ears - muffling quality.

What a happy sight we make on the highways of Spain - in the front - parents oblivious, singing and swaying, happy and carefree. Pan to the back, where the squashed, deformed faces and desperate, open hands of bemused children are pressed against the windows with only enough room for them to write in the condensation from their breath on the glass - 'PLEASE ADOPT ME'...

Pebbles and Ripples

"Can we all just calm down here a minute please....?"

These were the fateful words uttered, with full patronising accompaniment of palms outstretched, patting the air in front of her as if guiding in a Hawker Harrier on an aircraft carrier, by my 15 year old daughter, in response to me raising my voice, at the third time of asking her to look for her mobile phone charger as she had no alarm and the cockerel we'd hired to wake her at the crack of dawn, was slowly losing the ability to crow as it was being intoxicated by her brother's trainer whiff.

I almost choked on my Prozac.

These words did something to me. I found it hilarious, infuriating, saddening, shaming and condescending - all at the same time, in a micro-second. I looked at her, unable to speak. The old chestnut; 'I would never have spoken to my mom in that way...' rang through my head. Although that kind of confidence to express herself is great, I'm beginning to feel like living with teenagers who are not afraid to speak their mind is not good for a parent's self-esteem. Their free expression can come at the expense of feeling good as a parent especially when the children are acting like 'critical parents' and are questioning how you are and what you do. In fact, sometimes it's like being a kid again.

My son is prone to hurling insults freely and the usual howls of 'you don't understand me...', 'You're bad parents...', 'Leave me alone...' and 'I'm ringing Social Services if you don't give me my Playstation' have slowly, mainly due to their repetition and therefore induced compassion fatigue, lost their impact on me. I suppose in the same way as my 'nagging' him to 'cut his nails' has less impact than donning an Edward Scissorhands outfit and, while he rem sleeps at 3 a.m in the morning, sticking a pointed finger up his nostril and bellowing menacingly 'CUT YOUR NAILS'....

However, when I am on the receiving end of my adolescent daughter's wrath and/or condescencion (the latter being worse), it's like a blow below the belt.
'Calm down'??
'Calm down'????
This from the girl who could wind up The Dalai Lama - in fact I'd pay good money to see them in a 'head to head', with my darling daughter jumping up and down, flapping her arms and screaming hysterically while his holiness calmly reassures her that when her brother 'does the finger' at her, it is merely a reflection of his 'inner turmoil' and not a 'let's wind up my sister 'cos it's fun watching her whirl like a Dervish' move. It's like throwing a pebble in a pond - his 'finger', in this case, is the pebble, her reactions are the ripples. As his holiness asks her sagely if she really wants to be a 'ripple', I can see her now - scrunching up her face, shrugging her shoulders, raising her hands questioningly and glaring at me; 'Ripple?? What is he on about??' Buddhist metaphor is lost on the disaffected...
The trouble is teenagers don't know what it's like to live with them... It's probably similar to living with parents when you're a teenager. Pebbles and ripples. Pebbles and ripples.

"Calm down"?
I'd love to.

Hoisted by my own petard

Homework. Exams. Apparently not as important as re-arranging the furniture in your room and placing your book collection in order of size... Now I know that I am to blame for some of this newly adopted tactic by the son and heir to displace any school-related activity in favour of a more mind-numbing activity.
For 10 years, I have tried with a monumental effort, to get my son to tidy his room. For 10 years, I have also, with an even more monumental effort,tried to get him motivated to do his schoolwork and study.
Now, in a cunning twist of events and with a certain amount of intellectual aplomb, my son has decided to do his homework in his room (ok, he's 15 - we'll go with that) - but first, he has to completely overhaul his room to ensure it's habitability. Unfortunately, this process can take 2 hours - not leaving much time for schoolwork, but leaving an immaculate and ordered room. Now, this new approach towards his pit is, don't get me wrong, refreshing - visitors may use the bathroom and on the way, not mistake his room for a pig breeding centre or an experimental toxin laboratory. When people ask if they can use the bathroom, I glow with pride, I am like the woman from the shampoo ad - I shake my lovely shiney hair in a carefree manner and beam 'Of course, go right ahead, take your time, maybe even 'linger' for a while outside my son's room...'. I fight the urge to give them a camera.
The trouble is he knows I like 'tidy' and 'clean' and that I like his room to be tidy and, because his study time is obviously more important, I am going to have to utter words which I know will stick in my throat;

'Forget your room, come and study.'

Coup de grâce, checkmate, 'hoisted by your own petard', 'stitched up like a kipper' -he will use my words to his advantage for ever more. If only he put as much effort into life skills as he does into out-witting me... His bedroom will once more return to its natural state, while he pretends to work (staring at a school book for 3 hours while really plotting his next move). Once more, when visitors ask to use the bathroom, I'll look plaintively at them and say 'We haven't got one...', it's that or blindfold them while spraying half a can of 'Oust' in front of them as they climb the stairs...

Red and Blue makes Purple

I don't know why I'm writing this, perhaps it's because I've just had a barrage of sulky abuse from my son and heir and am feeling alone. No-one really understands the frustrations of raising a child with ADHD unless they do it. The pressure I feel to present him to the outside world in a positive way is huge and always has been. This pressure is mainly because society is very black and white or red and blue, whatever the contrast - if you're primarily perceived as one thing, that first impression will define you. There is truth in the expression 'mud sticks', and my teenage son is not 'red' or 'blue' - he's 'complicated' and needs patience to be understood. My son likes to make a good impression upon others (he’s confessed to ‘manipulating’ people in order to ‘get’ stuff – admiration, sweets, money – any attention), so he’s nearly always charming, which helps, but the downside of that is that people only see one side of him and minimize his diagnosis. To them, he's 'red' not 'blue', when really he's both, to extremes.
The reality is he finds it difficult to take responsibility for anything - his appearance, his work, his self-esteem, even taking his meds. He's almost 15 and other people don’t see me MAKING him brush his teeth, wash, put deodorant on, cut his nails, change his clothes so he doesn’t smell, counsel him, lock the kitchen cupboard so he doesn’t overeat (he finds it difficult to stop eating and was once sick because he’d eaten so much), monitor him on the Internet, make him do his homework, I tutor him daily to help him through exams although he doesn’t want it – even though he’s failing at school, he feels he’s OK and is sulky, aggressive and rude when I try and help him. Despite this, we do try and give him freedom, but we have to be careful because he’s impulsive and doesn’t have much of a sense of danger. So this is where his mobile phone is great, only he uses up his credit on sending pointless texts to his friends instead of keeping it to ring us in an emergency! Sigh... His medication has improved things so much – he’s a lot happier and less impulsive, he thinks more now and is willing to have friends and let them take the spotlight for a moment. It’s easier to let him go out. Before medication, he would get into fights, endanger himself and be very aggressive and depressed. We still have these times, but not like before, although he steals money and food from us and he breaks stuff through anger. We teach him the same basic rules every day and he still forgets them or chooses to ignore them. His room is always disgusting, even though we make him tidy it for health reasons on a regular basis – he hates us for that but as he’s on the autistic spectrum as well, we need to instill basic life skills – I don’t want him to have a negative self-image and low self-esteem. So I cook with him, he can iron, he recycles, takes the rubbish and comes shopping with me - budgeting, reading sell-by dates and nutritional values.
The practical support we can give him is easy really although time-consuming. The psychological and emotional implications of his ADHD and ASD are harder to bear, for him, his sisters and for us.
When he winds his sisters up or swears at and threatens them or tells them he wishes they were dead – I could cry with utter sadness. This is not the picture of family life I had. At the worst moments, I imagine for a split second what life would be like without him – and I'm ashamed - I die inside a little each time, because, despite all of this, I love him with every last breath of me. At the best moments, he’s happily chuntering on about his latest obsession, he makes me laugh till I cry, he’s thoughtful, helpful and charming, respectful and polite. A lynchpin of our family. I'm so proud of him, his achievements and skills. At these times I see the man he can be – the amazing potential in him and I will never let him give up on fulfilling that. It's all I can do when at times I feel so helpless and hopeless - I have to slog on, because he'll have to everyday of his life and if he's going to learn one thing from me, it's going to be NOT to give up.