The Girl Who Listened

We are living with a spy!  No, really!

It started with sinister shark but things have progressed from there and it is like the espionage era of the Cold War in our house. Let me explain.

Like a lot of autistic people, Emilie loves repetition and she became addicted to her toy shark, which could record a few seconds of sound and then play back. Sinister shark was a scary looking thing, about as cuddly as Anne Robinson holding open a man trap. But Emilie loved it and carried it everywhere. Anyway it broke and like fools, we bought her a proper, hand-held recording device to replace it.

Mistake.

The thing is, it doesn't just record five seconds and then self wipe when next used. It can record.....hours. But most scary of all - you cannot tell when she has switched it on!

WE HARDLY DARE SPEAK!!

Our most intimate moments could be relayed round the school quicker than you can say - 'do you fancy trying something different tonight honey-bun?'  She also goes to respite once a week of course, another opportunity to share the goings-on chez Willis with a wider audience.

And we are so on our best behaviour. Having two autistic daughters means we have a social worker. A social worker who will visit the children at school. Picture it:-

'How are we doing, little Emilie?  Oh what have you there. That looks interesting, let me see.'

CLICK - <sounds of exasperated male parent fills the room - Em always has it on full volume>

'For God's sake, Helen. A man can't even go for a crap now without one of the little gits wanting to be in.'

'I know, I know.'

'Do you think we could stun Emilie long enough to parcel her up and post her to Rwanda?'

'Possibly, can I do the stunning please, you didn't see what she did with my nail varnish.'

'Or we could just blend then little sods and feed them to the cat, nobody would ever kn......oh hello Emilie.'

CLICK

So yes. She has us where she wants us. Anytime she does wrong and we bear down on her with grievous,  parental intent - CLICK!!

'Never mind, Emi - am sure you didn't mean to chew daddy's laptop keys. Poor little mite, are you hungry my darling one?'

So there we have it, we are the Big Brother house (apologies to George Orwell). Everything under surveillance. My daughter is the Spy Who Came in from the Cold.  The Girl who Knew Too Much.  Tinker, Tailor, Soldier, Emilie!

Of course there is one consolation. One small little flicker of light in the dark, dark tunnel. Now, how can I put this? Well, if you are reading this and work at Emilie's school or at the respite centre (and I know YOU read it there!). And you thought your rather titillating secrets were safe?  Well, let's just say we don't need to bother watching soap operas in our house. We just need to.....

CLICK!

Thanks for reading.  :-)

An Autism Merry Xmas

Well, it is the last day before the children go back to school after the Christmas break and what do you know? It has been okay.


Okay Christmas Day was weird; Lucie woke and declared she wanted to open her presents alone. She then spent the morning in the summer-house, which saw me out there in the pouring rain, bare-footed, in tartan PJs, feeding her the marshmallow breakfast she requested through the door. Who needs LSD for hallucinogenic experiences when you have a daughter on the spectrum!  But she enjoyed herself and the neighbours got a laugh!

Emilie, meanwhile, woke up about 7am and decided a visit from Santa could remain unexplored. Instead she bounced on her bed for three hours before finally venturing down to unwrap her presents. This year was something of a success; she liked two out of nine of her gifts, meaning only seven of them had to go 'in-up' (furthermost shelf of the garage). So again - result and hey - a Rudolf shaped selection box will be fun to open in May.... :-)



However, what made this festive period a success was Helen and I's attitude. Our worst Xmas ever was last year when we pulled up the drawbridge and hid away from the rest of the world. We always say Christmas is the only time we feel 'loss' in having two autistic children. It is a time made for kids and ours do not 'get it' in the usual way. But last year was so depressing, sitting in the house alone, wallowing in the difference autism makes. Hence this time deciding to throw ourselves into socialising. Visits to in-laws for a party (oh those prawns!), a trip to family in Peterborough (oh that Chinese meal!) and everyone round to us for a night-time Xmas meal on the 25th (oh the need for a bigger dishwasher!).  I also met up with a friend I'd not seen for 22 years (oh the memories!) and re-established a connection that will hopefully endure. Say what you like about Facebook, its ability to re-connect us is profound; "like" indeed!

So, what of next Christmas?  Will we do anything differently? No - I think reaching out to people is the way forward. Having two autistic children is sometimes a ready made excuse not to make the effort - but if life teaches us anything, it is that we are social animals and need our support networks. So - more of the same in 2013; with perhaps some waterproof bunny-slippers for me - please Santa.  :-)

The Little Things

When I awoke one morning last week, my first action was to dress in cold porridge.  Well okay, not really, but that is what dressing in the previous night's discarded clothes feels like.  Porridge. Cold, clammy and  slightly distasteful.  The reason I needed to grope for pre-worn pants was Emilie had taken a dislike to my dressing gown. It had gone 'in up' - or for non-regular readers, Emilie had insisted it lives in the garage, where it remains. Not the end of the world, I grant you, but I like my dressing gown, its easy to put on and fluffy. It provides instant comfort in a harsh world. It gently allows parts of me to wake up unconfined by tight fitting....porridge.

This set me thinking about other little nicies autism means we do without.

Cleaning ones teeth without worrying what Emilie might have done with the brush. Finding it not where I left it means I have to make the sort of cliff-edge decision air traffic controllers or surgeons make. To brush or not to brush? Trembling with indecision, whilst standing there in my clammy porridge.  Has it just slipped from the shelf, or has Em been using it to clean the loo with.....again?

Car journeys listening to MY music. I miss that too. Lucie insists on Christmas sounds from about August onwards. Sleigh bells and bloody Cliff Richard (Mistletoe and Wine is surely the most insipid piece of music ever) do not go with eighty degree heat.

Being able to keep keys in accessible places.  In other words, places that do not require the code breaking skills of Bletchley to find. Even Jehovah's Witnesses have been known to get bored waiting whilst we unlock various key pads and clamber up to hard to reach places. Oh and letting the meter reader in and locking the door behind him is a good way to ensure he never wants to visit again. I'm sure our house has a Bates Motel kind of vibe with the local utilities.

So yes, little things but still.

Big things are similar. We have just come back from our first holiday in 20 months. It lasted four days and we returned to York twice (only from the coast 40 miles away). Once because respite didn't cover the whole period and another time to collect Lucie who had a seizure (epilepsy) at school. Oh and it snowed. And Helen's mum became ill. And respite rang four times because they feared a gas leak in the night and might have had to shut (false alarm - leak was farm type smells).

Do we feel hard done by?  I am not sure. I miss being able to leave Yorkshire - my hobby used to be travel in my bachelor days, now I make your average agoraphobic look like Alan Whicker! But then I no longer have to be behind a s'boring insurance desk by 8am each morning and at least we get to spend time with our children. They will also never leave home and Helen and I will never need to feel the humiliation of going to 'Navigating the Empty Nest Counselling' . The only sobbing over our children's empty bedrooms we will experience will be because the little blighters won't go in there to sleep!

So, perhaps little things and big things are all the same really. Not a blight or a bonus. More how we choose to interpret them. At the moment, we are still managing to do that with a smile. After all, one can always put jam in one's porridge!

Thanks for reading,


Mark.

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!

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

Monday Morning 6am

Clock says it is morning, but as I type this it is dark outside and the cat hasn't deemed it sufficiently a.m. yet to demand her food. So night it remains!

A tough night too - Lucie very upset and unsettled, meaning she needed to share our bed with Helen - I got Lucie's place in bed with Pixie Lott and Microwave Rabbit (don't ask).
At 4am, Emilie crashed in demanding 'batteries', which was something of a nerve jangler. Her recording shark had wimped out in the night and lost all the recordings she had made during the day. Batteries were therefore found, computers switched on and the recordings replaced. Only in this household is a shark recording of 'Jingle Bells' required before sleep can be attained. Especially in September!

Today - when it bothers to get light - is going to be something of a critical day. After consultation with school and Lucie's psychologist, we have (reluctantly) agreed to play it tough and try and get Lucie back into class on a more regular basis. You may be able to help us here, see if you can come up with a reason for this little problem:
Lucie trembles, vomits and cries at the thought of school, but when she is there, seems to enjoy it. If she hated it, life would be simple, a new school or even home tutoring. But that isn't how it is and she cannot tell us what troubles her. To us, Lucie going only three days a week would seem a sensible solution, in the short term at least. Her anxiety would be reduced and she would have some quality time with us, away from her sister. But in this tick box world, it would appear that such a compromise is not to be; the authorities are set against it. All or nothing it seems to be.
So in about two hours time, we will attempt to propel a trembling child to school who has barely slept and is losing weight through being too nervous to eat. As a parent, this is going to be a tough ask, but maybe we are overprotective. It doesn't feel that way, but maybe?

Something does need to change though. Last Wednesday Helen went for a short stroll and texted from it to say she didn't feel she could come back for 24hrs. She needed a break. Of course she did return, within the hour, but for someone who hasn't flinched once in the last fourteen years of parenting our children, the act said it all.

Whatever this week of 'tough-love' with the school situation brings, I hope that it is conclusive one way or another, because Lucie has not been happy at this institution (or with the thought of going) for the last three years. The stress has worn her down and physically she has suffered too with repeated water infections, chicken pox (which became infected) and numerous other minor ailments. Her epilepsy is also aggravated by feeling tired, of-course.

So, let us hope for some answers and maybe some clear signs that things have to change. As most parents will tell you - we would do anything for our children - which is why not knowing what 'anything' is, is so hard. Wish us luck for the week ahead.

Thanks for reading,


Mark

S.O.S.

It is funny how you know the precise moment when you can't cope any more. I mean really can't cope.

Over the last fourteen years things have been pretty torrid on numerous occasions; the poo-smearing, tantrums, Emilie's screaming sessions during last year's summer holidays, which could last a full eight hours at a time. But we have always felt we could cope. We've also recognised that it is never a single incident which makes caring so difficult, it is the accumulation over the years. We have not been abroad for over a decade, or really ever had a relaxing holiday in that time - taking two autistic children away from familiar surroundings is always an adventure rather than a break! We've always felt in control though - able to see a future where we continue to look after our girls into adulthood.

Today though is our first real SOS. Our first doubt.

Everything seems to have broken down. Lucie vomits and sobs at the thought of school, we think because her sister is there and she needs the break from her. So school, one of our survival blocks, is starting to crumble. Lucie feels the same way about the Glen (respite) too - another block crumbling.
Emilie for all her boisterous, bed-breaking bouncing and her shouting, is generally a happy child. Another block - she is far from happy at the moment - she is in distress.

For some reason Em has reacted to the return to school and the screaming sessions of last year have returned. Last night she shouted into the early hours, Lucie trembling in our room, trying to sleep with her industrial earphones (seriously) clamped to her head. Emilie crashing into our door, Helen and I jumping as though electrocuted - nerves so on edge. Nobody slept much.

Same again this morning, no school for Lucie - Emilie shouting in the street whilst waiting for her school transport. Sitting on the cold pavement, refusing to move. Screaming and shouting.

When her sister had finally been calmed and coaxed into the taxi, I took Lucie for our customary walk to the local village shop. Normally I enjoy this, but when stressed, somehow it can put years on me.

scrape.....scrape.....scrape

That is the sound of Lucie's shoes next me as we walk - somehow they encapsulate all that is difficult about autism and the sound cuts right through to the nerve. At the moment, she will only walk in a certain pair of Ugg boots, despite having some lovely pairs of boots and shoes to choose from. The scraping is her walking on the sides of her boots, not the soles. The material chaffs against the rough pavement, tearing slowly at the material. Lucie has flat feet and her dyspraxia means she walks on the sides of her feet. She has specially made insoles, they won't fit the Ugg books. Hence;

Scrape.......scrape......scrape. I try to think calm thoughts and breath slowly.

A man I recognise from the village stares as we exit the shop, his shocked look turning into an embarrassed smile as he catches my eye. Normally people staring bothers me not one iota, I'm proud of my girls and love them. It bothers me not today, to be honest. But the scraping does.

Scrape....scrape....scrape.

In the corner of my eye I can see Lucie's hands making the claw like movements which herald a potential tantrum. I'm too tired for this. My hands clench the bag I'm carrying, jaw tightens. I dare a proper glance and see she is smiling.

Phew. Odd though, claw-hands usually means impending meltdown, but I push the thought away.

Scrape....scrape.....scrape...

I quicken my pace. I want to walk away from all this and just relax. Just not to have to care, for a while. Maybe just half a day. The scraping recedes as Lucie gets left behind and I feel awful, stopping, putting on a friendly voice;

'Come on Lucie, keep up, nearly there, sweetie.'

She can't hear me of-course, she plugs herself into her ipod for these walks nowadays, but she can tell I am encouraging her.  I walk on, gritting my teeth against the scrapes and then suddenly picture myself, how I must look. A middle-aged man with hair unbrushed, shoulders slumped forwards, looking at the ground, trudging along like a victim on the march to Dachau. It comes to me in a flash:

The man wasn't just staring at my daughter, he was looking at us both. The autistic daughter and the broken man.

Whilst I have been typing this, a couple of paragraphs back if you want to know, Lucie started sobbing and howling upstairs. It could be anything, but it could also be that she did indeed intuit my mood on the walk and this is backlash. The clawed-hands, usually a sign. A lot of autistic people struggle to recognise human emotions and feelings in others, but Lucie has always been tuned in. I feel awful - I should have tried harder.

Whilst I've been at the shop with Lucie, Helen has emailed school, our social worker, respite and the children's psychologist. After fourteen years of coping, we've had to admit that we can't. Not today anyway. We have a meeting with all parties at 4:30 today - so that is something, although part of me just wants to curl up and sleep. I'll be honest, part of me also hates asking for help.

I don't mean this to sound melodramatic, I am sure we are just in post-summer holiday crisis, when our reserves aren't coping with a new crisis. I am sure we will overcome this hiccup and we may even get some extra help. So please don't gush sympathy, or tell us how well we are doing. It is merely I want to keep this blog as an accurate reflection of a year in the life of parenting our two gorgeous but challenging children. So, I must do that, warts, scrapes and all. Trust me - this blog will be funny again next week...for that is how life goes. Ups and downs - we are no different from the rest of you - despite the stares!

Thanks as always for reading.


Mark