Saturday 27 October 2012

Who knows your child best?

Children have such an honest way of dealing with liars; they just come straight out with it:

'Oh yeah, suuuuure!' They exclaim with great irony, stroking their chins. Or they do the less subtle, but charmingly unequivocal:

'Liar, liar, bum's on fire!'


How I wished for such honesty a couple of weeks back when we went to see Lucie's headmaster.

The reason we visited school was to gain permission for Lucie to trial a three-day-week in class, with us providing the teaching for the remaining two days. Our argument, backed to a certain extent by Lucie's psychologist, Erin, (who also attended) was that our daughter was exhausted by her anxiety as things stood. Her uneasy relationship with her sister meant she never got time to relax; she was either at school with Emilie or at home with her. As regular readers are already aware, to cope with Emilie, Lucie spends most of her time in the summer house, or with industrial ear phones on, or hiding in her bedroom. She gets no rest.  Each time we tried a full five-day school regime, the same pattern would emerge; increasing tiredness, sobbing, shaking, the beginnings of minor physical ailments, nausea and finally exhaustion.

So, this was my line of reasoning with Lucie's headmaster. I had prepared what I was going to say and read it out in measured tones, ending with this question:

'As a parent, how can I send a child to school who has wailed through the night, retched her stomach empty through nerves and has emerged into the morning an exhausted wreck?'

I was expecting agreement, understanding and maybe even a small amount of sympathy. But the headmaster said nothing. Just silence, folded arms and pursed lips.

Silence.

It was left to Erin to fill the void, talking about theories and a period of three day weeks to at least 'test' our belief in what was wrong. I heard her words, but I just didn't take them in. I was too busy grappling with the revelation that I clearly had not been believed. What else could explain the lack of response - surely as an adult, silence meant disbelief? My mind raced to dimly remembered stories of Munchausen by Proxy - parents who fake their children's problems for attention. Surely he didn't think.........?? To cut a long story short, we got our trial period, but both Helen and I were deeply unnerved by the reaction from school.

Now, I acknowledge there is a puzzling reality gap to the whole situation, which understandably confuses both sides; Lucie appears to be happy at school, whilst desperately vocalising she doesn't want to go whilst at home. I also have no doubt that Lucie's headmaster does his absolute best for his pupils and strives for them; I can recall his pride at their (for example) sporting achievements and the enthusiastic way he engages with them. But I still feel we were dealt with rudely and as such, felt both wretched and worried as we drove home.

Two weeks on, the three day school regime is working; Lucie has perked up unbelievably. She no longer sleeps for twelve-fifteen hours at a time, she has stopped losing weight and her eating is not hampered by her nervous-retching. She trembles less, she is chatty, engaged, each night she dances in her room, listening to her music. She sings along to it too, her sister thinks she is in terrible pain and comes to tell us, but we know differently - a tin ear is not pain, or anxiety! So things are going well.

Our psychologist, Erin, meanwhile, has been to see us again. She was horrified by just how wretched we felt during the meeting and although she also felt the tension, was at pains to re-assure us that nobody has any doubts about our parenting skills or that we are telling the truth. More just that this paricular headmaster can be a little distant with parents. Suddenly we felt things were out in the open again and in that open, 'cards on the table' atmosphere, Erin explained her two theories over Lucie's behaviour.

The first is that Lucie is exhausted by anxiety and on a school morning, believes she cannot cope with 'being good' and all the other demands class brings. Basically this is the same as we thought. Her second theory, however, is that as Lucie had a lot of genuine ill health problems last year (epilepsy, chicken pox which became infected, repeated water infections), her self image is that of an unwell person. Even though she is now fine physically, she perceives herself as someone who can't go to school, because in her mind, she is an invalid. In fairness, this latter theory makes sense and does fit some of the facts and it made me realise that as parents, we don't know absolutely everything about our children and there is a case for allowing the experts to........well, be experts.


But silence doesn't block or avoid argument, as I suspect the headmaster believes (in fairness, some parents can doubtless be a problem). Instead it stifles the debate through which truths and solutions emerge. It breeds mistrust and paranoia. Despite reassurances, I still find myself dreading returning for another meeting at school next month.

We have learned that experts have their place and that we need to take all the input we can; Erin's second theory, for example, is just something I would not have thought of. And we also must accept that children have lives away from us, we don't see the whole picture. But at the same time, parents surely do know their children best, something other stakeholders in that child's life should always remember. Always listen to mum and dad. After all - we've been there from the start!

Monday 8 October 2012

The Little Girl in her Lair

You know on TV; Morse or Taggart or something, when they finally uncover the lair of their killer? They usually find all sorts of sick, depraved stuff that reveals the mind of their quarry; obsessive photographs of the victim, locks of hair, their mum's dresses, that kind of thing. Well our garage and Emilie are a bit similar.

You see, autistic children often cannot bear certain items. Not the kind of things you and I hate; the ceramic duck Aunty Sissy gave you last Xmas, but everyday things that somehow upset their equilibrium. To an autistic person items in the home often map a world they want to make sense of and to feel safe in. This explains the often obsessive behaviour, the need to arrange toys in rows, have furniture a certain way.

With Emilie, it explains, 'in up'.

Quite often, Emilie will hand you some random item and say; 'in up.' She means, 'please put this in the garage, preferably deep in there and up on one of the highest shelves, because quite frankly, I can't stand this item.'

Which I guess is fair enough.

Unfortunately however, Emilie can do 'in up' without our help. Instead, rather like a 1950's Hammer movie, you just become aware of items mysteriously disappearing. At first you blame untidy spouses, or your own faulty memory. Slowly but surely however, you come to accept that once again Emi has struck.

Your missing items are deep in-up!

I have just spent the last hour exploring the garage and as I say above, it reveals the mind of this strange little girl we live with. Amongst the shelves, behind the boiler, under planks of wood, some things I've not seen for years have emerged. Let me share with you a little of what Emilie cannot tolerate.

Tins of Ravioli - Heinz only.  Marks and Spencer ravioli is fine. My daughter operates snobby in-up, clearly.

My dressing gown. This irks. I'd love to roll out of bed into a lovely warm gown, but Em won't hear of it. So instead (you will recall we share a bedroom with Lucie at the moment), I have to grope for yesterday's pants and top if I need a nocturnal wee (becoming worryingly more common, but I digress)

Door keys. You always find them after you've had more cut and changed the locks - thanks, Em.

Spotty coats. Only spotty ones - stripy or plain is fine.

Teletubbies.  Actually Em, I'm with you there. In fact, if you want to feed the rotund little bastards into the boiler, I'm okay with that too.  Just do Tinky Winky really slowly.....

Shoes - usually her sister's, which creates so much fun when the school taxi arrives and suddenly we are faced with sending Lucie off in wellies. But not the spotty wellies, obviously.

Where does one draw the line with this behaviour? After all, my daughter cannot help it, it is a factor of her autism. I tell you where I draw the line, dear reader - when she messes with Patch!

Now I consider myself a reasonably mature forty-something man, I do not get upset about trivialities and I know what is important in life. I'm well rounded, reasonable and fair.

But if she lays her one finger on my fluffy toy dog again - I'll ......I'll .......just cry!

I had to sleep without him last night! You know why? Because Em is an experiential learner - she adapts like bird flu. Having retrieved Patch umpteen times from the garage, she changed hiding place. 'In up' became out the landing window and on the porch roof. I had to climb out in non-spotty clothes to rescue him while the neighbours shook their heads.

'Mad Willis is off on one again. On the roof now, he is. Wife's probably thrown him out - not before time too'

Poor Patch!!

So now I hide him. In the sock drawer next to my bed. And wait. She has gone too far this time. This is war!   I'm not afraid of her spider in the web act. The obsessive in her lair. I'm not scared. Well...not as long as I've got my fluffy dog!

Thanks for reading,


Mark