Everything Starts with an A

Things that 2011 has taught me....

2011-12-30T14:16:00.015Z

So. 2012, eh? Blimey. It scares me a little, if I'm honest. You know how cats get when they're exploring new territory? All hunkered down and tiptoey? I feel like that. After the year we've had in 2011 anything could happen. There have been so many changes in the boys; a too-small car; a new car; more debt (sigh);a new furry arrival (another kitty to add to the menagerie); G's diagnosis of Aspergers; Dave's diagnosis of Aspergers; new friends; my beloved granny's death; Dave's architecture company finally going belly up (this was a biggy); new job for me after 10 years of not working.... Suffice to say that change was the watchword of 2011. And we survived. We're ok. A little shell-shocked at times but pretty much fine and dandy when all's said and done.

I've learnt a lot in 2011 and, in no particular order, here are some of the noteables:

Firstly: Hand-holding. Seriously, this is a revelation! I've written before about my Danger Boy - autism and no sense of danger etc. J moves quickly. Add to that J out and about in public - super-sensitive to noise and new experiences, liable to get into a blind panic at any moment... He'd run out into traffic once too often - my heart couldn't take any more near-misses. I called on my autism guru, Gina Davies (google her - she's brilliant) at a time when life had got all too tricky. She gave me some brilliant advice - but "making hand-holding a rule when out in public" was the money shot. It sounds so obvious, doesn't it? But holding hands with a child like J is like holding hands with water! Holding onto a slippery fish that doesn't want to be held onto. Several months of visual prompts and "hand-holding training" it took but now it is The Law. It works. It means that we can go out without fear of imminent death. Phew!

"Wait and See". Another "Doh! Why didn't I do that earlier?" moment. Autism likes solid facts. Autism hates maybes. Life is full of uncertainties and maybes. We live by the visual schedule but we are not psychic dammit! Sometimes our planning can't be water-tight but I've learnt by my many mistakes that promising something that is uncertain does not win prizes. "Wait and see" has saved us! J has accepted this phrase and it's got us out of many many tight corners.

Animals are amazing. There's something magic about the relationship J has with creatures. When J was a tiny poorly baby I used to pop him into the hammock on the veranda of our (then) island house and a pair of Kingfishers (who had rarely been spotted by any of the islanders) would come and land on the railings beside him. I've written before about Claude the Wonderdog - he is still as wonderful as ever. But our cats, Sass and Schmoo are currently unsung heros. J talks to the animals more than anyone else. He "cuddles" the cats frequently (for "cuddle", read "squeezes the living daylights out of"). They are massively important to J (and to G who is a much much better animal owner!) but somehow they know that he loves and needs them. If anyone else carried them upside down in a loving "embrace" they'd get their eyes scratched out but for some odd Stockholm-Syndrome reason, they let J do it and his is the first bed they choose to hop into in the mornings. Odd.

Going on holidays with your in-laws is a delight. Actually family is vital. Who knew? My parents have each boy for a couple of hours a week so that I can spend time with the other - this has kept me going some weeks. The importance of extended family can't be down-played in our situation. People who love and understand and support us, in spite of all of our foibles - Gold!

It took us years to get it but G's official diagnosis of Aspergers was one of the best gifts this year! We always knew that something was up but having it written on a piece of paper - and the understanding that this has brought has smoothed the way for G. I'm not saying it makes things easier - living with an Aspie (or two) is an education at times - but it just makes sense of things. That said, when he tries to pull the "but I can't help it if I have special needs" card to get out of some misdemeanour or other, it turns me into Voldemort Mum! It's not an excuse, but it is a reason..... there's a whole post on this in my drafts folder waiting to be tweaked ...

Drugs. We've looked into every other option but it seems that drugs are the answer for J. He can't live with these extreme levels of fear and anxiety and rigidity any longer. He recently asked me to help him feel less worried. Announcements over loud speakers, sirens and fire alarms have been the curses of 2011 - it's difficult to persuade J to leave the house. It's hard to avoid these things without moving to the North Pole. We have an appointment in a few weeks to get started down this route.

The importance of keeping those windows into my boys' worlds open. Both boys have super-strong special interests. For G it's the history of video gaming. For J in 2011 it's been: trains, the London Underground system, bus routes and now it's motorways (see the theme there?). Dave and I have spent hours and hours travelling on these various forms of transport with J with him noticing every single teeny tiny detail of each. We've spent hours and hours discussing techie stuff with G. Without this input we would not have the connection with our boys that we do.

My husband totally rocks! I've really properly learnt that in 2011. I knew it before, of course, when we got married nearly 13 years ago, but this year I've learnt it all over again. What's that statistic? 9 out of 10 marriages fail if there's a child with Autism in the family? Well, I can understand why. We never came close to this, but suffice to say that it's almost impossible to keep the balance when you're fighting tooth and nail for your child's well-being. Chuck a load of grief/anger/exhaustion/desperation/a few parental ASD genes into the mix and add a dash of financial instability. Well. It's not all hearts and flowers. But in 2011 I've learnt that with enough effort and appreciation from both sides it is possible to become a Crack Team. He's the yin to my yang, the salt to my pepper, the Team Edward to my Team Jacob, the Gavin to my Stacey, the Arkwright to my Nurse Gladys... I do the fire, fluff and frivolity and Dave does all the stuff that keeps the wheels turning, while belting out a good old show tune. It works!

Music is good for my soul. Surfing's even better and a job was just what the doctor ordered! I love going out and having fun. Music makes the world go round. I have some brilliant friends. If I could surf every day I'd be a much much better person. My job (as a Play Assistant at a school for kids with major disabilities) came along in the nick of time - just before I disappeared up my own arse!!

Things change all the time. Never give up. I'm beginning to see that just when things get as bad as they possibly can and I'm at the end of my tether, something magically shifts and it all gets better again. It works the other way too - things that have been staples, things that have always worked for J and G just suddenly need tweaking. Nothing stays the same. I like knowing this because it stops me from despairing or taking things for granted. One thing, however, that will never change is that I will always fight for my boys to be the happiest and the best that they can be. I've learnt in 2011 that some of that fight in 2012 should be with myself - to hold back a bit and loosen the apron strings a tad - let them fly on their own. Find out where the effing laundry basket is, for starters! Hello Independence! Goodbye Slave Mum!

Nobody gets it right all the time - particularly me! However far into this autism journey we get, I still make beginner's errors. I'm getting better but nobody's perfect. The kitten was hiding under the rocking chair a while ago and kept darting in and out to grab a toy. I said to J that Schmoo was like a little eel poking out from under his rock. Innocent enough, you'd think.... J charged out of the room and hid in his bedroom. Nothing would lure him out until I'd convinced him that the chair was a rocking chair that didn't have a rock in it and there absolutely definitely were no eels in our house! It took weeks of checking before he believed me. Oops!

So come on 2012, show us what you've got! We're ready and waiting. Tentatively. A big lottery win would be good. A huge house with a massive garden right by a great surf beach, miles away from noisy traffic? Failing that, happiness, health and one or two tickets to the BMX event at the Olympics would do just fine!

Apples and Autobots: Straight From The 'Fridge--Er, The Incubator

2011-12-27T13:12:00.000Z

This post is so brilliant that I had to link it - well worth a read....

Apples and Autobots: Straight From The 'Fridge--Er, The Incubator

Achey Breaky Heart

2011-12-16T11:07:00.018Z

I always used to be a big cryer - sad stories, injustices, love, hate, yadda yadda yadda - I could well up at the drop of a hat.

When J was first diagnosed with Infantile Spasms as a wee babe and we realised that his path was going to be bumpier than average, I cried for days. Weeks. Huge great oceans of tears. Big, gulpy, primal howling some days. I understood the meaning of the phrase "heart-broken" for the first time.

Then J's diagnosis of Autism. Tears, but not the same level of shock. We knew it was the best outcome we could have hoped for after this cruel, rare type of epilepsy so there was a large dollop of relief mixed in. Strangely, though, it takes a fair bit to make me properly cry these days - thicker skin now? All cried out? Not sure, but it's a bit of a surprise when I find heaving sobs tumbling out of my soul.

This week it was J's school play. Me, Dave, Granny and Grandpa all went to see it. He attends a ASD-specific unit attached to a mainstream Catholic School. This was the Year 2 mainstream kids and J had been included. He goes into the mainstream class with one-to-one support a couple of times a week and has been on a school trip with them which he LOVED (mainly due to the double-decker coach and motorway journey, but still..). On the whole, this inclusion seems to go well for J. He's a clever kid and is academically able to keep up with his peers. No interest in the other children but he's beginning to ask me if he has any friends. He doesn't, by the way, but surely this question is a step in the right direction and something to work on. He managed the Christmas production last year so we thought it would be a good idea for him to do it again this year. See if you can spot J in the (very badly filmed) video at the bottom...

Did you see him? At the back? The lost and confused one - like a rabbit in the headlights? Did you see the member of staff helping him out? No. That'd be because that didn't happen. A couple of 6 year olds sweetly but very uncomfortably tried to help. Nice production, eh? Great costumes, no expense spared. J however, could not have looked more un-included and bewildered if he'd tried. Different - so very different from the other children. The fact that someone had forgotten to put any shoes on him didn't help. But inclusion? No. Token autistic kid? Hell, yes. He looked disabled. Unable. And that's not true. Ouch.

So, as we drove home my floodgates opened in a big way. I cried myself puffy and hoarse.

There are lots of layers of sad to this event:

Firstly disappointment for J who had spent weeks singing the songs to us at home and saying his line over and over - he missed his line, by the way. Not fast enough. Inclusion should support kids to achieve success - not failure. I would HATE for him to ever feel like a failure because he's far from it!

Then anger that he wasn't supported by an adult - would it really have spoilt the look of their precious production to have had someone there next to J? It is, actually a good unit - lots of the staff are lovely and we DO appreciate their hard work but, as parents, we want to know that J is in the right place for him. The place that intuitively knows how to bring him on to be the best that he can be. We have every faith that he's going to get there one day but of course we're going to speak up when things go wrong to try to fix them for the next time.

Next is a huge reality slap that J IS different. Of course, I know that he is but when the comparison is thrust under your nose.... It's not actually the different that bothers me - it's the being lost in the world of "normal", if that makes sense. We've been gradually getting more and more socially isolated (more in another post I think) so I don't know what a "normal" six year old looks like these days. This is the selfish bit of the sad but it hurts like hell.

G - The Bigger Picture

2011-10-14T12:08:00.013+01:00

We always had a feeling that there was something....a gut feeling really, but something just a little bit different about G's reactions to the world around him. Ok so no first-time parents really know what on earth they're doing with their new little bundles of joy but some do at least give out the semblance of coping! Not us. Even back then, it felt like everything G did was sort of normal baby stuff - but "normal on steroids"! He would only sleep for a matter of minutes and would wake, screaming and colicky and inconsolable. It took 10 months and a professional Sleep Clinic, (who almost gave up on him) to stretch those periods of snoozing to a delicious few hours. We were not fun people to have around as G cried almost constantly - I remember a roomful of NCT mums silently applauding when G had - for one time only - nodded off in his little seat for 10 minutes. Cooing strangers who thrust their faces into his pram would be rewarded with terrified screaming that would reverberate off the walls the rest of our trip - I used to pretend I was deaf when the inevitable supermarket granny would ask if he was a "good" baby (WTF?!) He walked as early as he damn well could - driven, I think, by the desire to get away from strangers.

Me and Dave were utterly knackered back then. I felt like the worst type of failure for not being able to make my baby happy. I didn't want a perfect baby - I just wanted my baby to be contented. We spent a lot of time, reading stuff, searching for answers and trying out different methods of "soothing your baby". Nothing really worked. G just wasn't comfortable in the world and that was that.

He was, however, the most intensely loving little chap - with his direct family.

When G was 2, I took him to the doctor about yet another ear infection and the doctor amazed me by commenting that his speech was delayed. To me he was the chattiest, brightest toddler around. I just hadn't realised that no one else could actually understand his hundreds of words. He hated unknown children and would literally throw himself off the top of the slide in the playground if another kid followed him up the steps. But, boy did that kid have a good memory...! The Health Visitor was duly sent round and took one look at the terrified, shaking child who was hiding under his bed to avoid her, and told me that my son might have Autism.

A bout of Speech Therapy sorted out his Swahili-type pronunciation and friends and family assured us that all the other stuff was "just normal kid behaviour". G seemed happier with his clearer communication skills and started at the local Montessori and the Autism word was buried. That was also the time when J had started having seizures and we had entered the world of blue lights and hospitals and diagnoses with him. As much as I hate to admit it, this did somewhat eclipse any worries that we had about G at the time.

Every few months, though, G would have a few weeks of really struggling with life - almost a cyclical thing. He'd be "fine" for a 3months and then have six weeks of being all out of kilter. He had friends, but didn't always keep them for long. He had intensely strong interests in things and almost seemed addicted to collecting things or information about whatever the interest of the moment was. He was massively over-sensitive to tastes and smells. He cried a lot at school but was also bright, quirky, chatty, hilariously funny, loving (almost overwhelmingly sometimes). Ach - he was ok generally but there was just that something - that niggly thinggymabobble that me and Dave just couldn't quite put our fingers on. When he was happy he was ECSTATIC! When he was sad he was MISERABLE and when he was angry he was LIVID! The emotional settings were all too high or too low. There were few grey areas. Impulsivity was huge, and shouting - his and inevitably ours (terrible terrible mother, that I am) - was a common occurrence. Oh and did I mention his reaction to change...?

We were frequently called into the Headmistress's office about the crying and now and again, about lashing out at other kids. She listened to our concerns about G's behaviour at home but told us that "There's nothing wrong with G when he's at school. He's very clever, he's very chatty and it's obviously the fact that his brother is getting all the attention that's making him feel sad". Hmm. Yes - we have a name for that woman that isn't overly polite...! Still, he continued to fall out of the school gates at the end of the day in floods of tears, even though I was told he was "fine" during the day.

Junior school and more cycles of "darkness" and "light" for G - generally a cool, bright, clever, popular kid. The interest in the history of video gaming intensified. He still refused point blank to go to birthday parties or play football or go to any after-school clubs at all. Now and again I'd enlist him in some activity and force him to go (God, sometimes even bribe him to go!). He'd always love it for the first two sessions and then refuse to go EVER again. Sigh. Two days out of 5, G would come out of school in tears, having been "fine" during the day. But he was ok. It was only me and Dave that had concerns. It was all "normal kid behaviour". The school staff continued to infer that I was an over-anxious mother, desperate to label her child.

Now, I don't think either Dave or me are neurotic types. We don't strive for that perfection in our kids that some parents find so crucial. We're good with "quirky". We're probably dissed for our lax attitudes for some aspects of parenting - tennis clubs and scholarships to the wankier schools in our area were never on the menu. We like our kids for who they are and want them to lead happy lives. And that's the crux of it. Something has been stopping G from being as happy as he could be. We never felt that there was something "wrong" with him - something that needed "fixing". We just wanted to understand WHO HE IS and to help him reach for the stars.

I wrote about our quest to help G in a previous post - Labelled with Love. And labelled he has been. Aspergers Syndrome. I'm going to write more about what this means and what this has changed in my next post, but I don't see G as "Labelled". I just think that a light has been shone onto his way of thinking about and perceiving the world. I'm not sad about it. To be honest, it's a relief after 10 years of knowing but not knowing. My main emotion, however, is pride.

Happy Boy, Happy Me!

2011-08-31T17:06:00.003+01:00

This time last year, J was terrified of the sea and the waves. Wouldn't go within 50 metres of the water's edge. I love the sea. Surfing (badly) makes me deliriously happy and almost religious, so to see my little man delightedly rushing in and out of the waves is a very, very lovely thing.

The only problem was that we couldn't get him out.....!

Breathe.................

2011-08-26T14:10:00.006+01:00

The long summer holidays are nearly over. Before they start I always worry that I won't be able to do it. To keep everyone happy, safe, alive, for all those weeks. But then we get into our groove. We even have fun. The housework has, yet again, fallen by the wayside (in this household of labels, thank goodness cleanliness-based OCD isn't one of them!) But happy, safe and alive we all are.

And the boys.... well, J has come on in leaps and bounds. A cheeky little fellow but NOT suffering from the crippling anxiety to such an extent and really really communicating. Even making jokes. Even playing with toys in a meaningful way at times. And G? Now that he has been officially diagnosed with Aspergers, the pieces of the jigsaw puzzle that we've wrestled with for 9 years are beginning to make more sense and to fall calmly into place. We know and love every hair on his head but the huge depth of understanding that a diagnosis brings means that we're getting to know G all over again. But properly this time. More on that soon.

Not much of my carefully-planned childcare has come to fruition - the best-laid plans.......hahaha! The one bit of time to myself that I've managed to claw is the early-morning dog walk with Claude while Dave gets ready to go to work and can look after the boys. This is my time to BREATHEEEEEEEEEEEEE! And each morning, while I'm breathing that freedom and fresh air into my soul, I take a photo on my phone to refer to during the day. I'm not exaggerating one bit when I say that these photos have kept me sane! In no particular order, and without any real flair for photography, here are a few....

Physical Labels...Dignity?

2011-07-24T17:53:00.005+01:00

The Summer Hols are upon us. We're visual scheduled and diarised up to the hilt, the wine cupboard is fully stocked. The grandparents have been enlisted. The extra pair of hands booked. I have given myself a generous one and a half hour slot on a Wednesday morning minus kids (kind childminder friend offered). The best laid plans and all that...What could possibly go wrong....?!

I have various posts in my drafts folder which need finishing and will do so in due course. For now though, I'd just like your reactions to the photo below. It happened a couple of weeks ago and is still playing on my mind. This label was attached to J's belt on his return from his school outing to Legoland. There was a contact number on the other side.

J is 6. We haven't yet explained autism to him. He can read. What does this say to him?

Bête Noire. Fear, Autism and Infantile Spasms

2011-06-16T10:56:00.015+01:00

"The only thing we have to fear is fear itself - nameless, unreasoning, unjustified, terror which paralyzes needed efforts to convert retreat into advance." F D Roosevelt

I've written before about Anxiety and Control. J's autism is governed by excessive anxiety and hand-in-hand with that is an extreme need for control. It's a strong force, anxiety. It pumps through J's veins for the majority of the day and shapes his and, therefore our lives.

A benign walk in the park, birds a-tweeting, sun with its hat on, grasshoppers hopping (you get the picture) can be tranformed from paradise to hell in a split second. If there's one unseen rock on the path, you can guarantee that J's scooter wheels will find it - Crash, Bang, Aaaaagggghhhh! Thereafter follows up to 2 hours of extreme crying and massive distress from J that nothing and I mean, Nothing (god, have I tried everything!), can fix. It's heart-wrenching for anyone to witness. All he wants is for me to hug him as tightly as it is possible to hug a flailing, wailing 6 year old and to bury his head into Claude's ever-trusty neck. So, obviously falling off your scooter and bashing your knee is not ideal for any kid. But for J, his constant anxiety is tipped into loss of control and from there on we move up a notch into FEAR. Primal, base, innate, FEAR.

This constant anxiety is mainly connected with the possibility of things going wrong. Falls, batteries dying, camera memory cards getting full-up, things breaking, unexpected traffic jams, the Broadband connection faltering......and so the list goes on. This is all pretty realistic stuff. Shit happens in life. But J is so anxious about the possibility of fallibility that when the inevitable happens.... BOOM - we have a full fear reaction. Pale skin, uncontrollable shaking, dilated pupils, screaming and sometimes even fainting. J has no capacity for self-regulation in these situations. Complete meltdown followed by another dollop of anxiety in the pot for future reference.

Our bête noire is Fear. We live with the anxiety every day. We change batteries way before they run out. We check for traffic jams before travelling. I'm constantly on the lookout for obstacles on footpaths. I charge laptops and phones like a woman possessed. I phone swimming pools before setting off to check that they haven't been struck by a freak bolt of lightening, causing closure. I do all that I can to prevent the black, strangling fingers of Fear grabbing at my boy's brain. It's like swimming against the tide. It's so tiring.....

I've mentioned before that we've talked to J's neurologist at Great Ormond Street Hospital about medication for anxiety. It's an option but has zombifying side-effects in kids (although if anyone reading this has had any direct experience of these meds I'd be v interested to hear..). I'm not keen on the idea. But it's in the back of my mind. I've looked into Alternative Remedies but can't find anything there either for kids of J's age.

Lately I've been trying to find out whether this mountain of anxiety and fear is solely due to J's autism.

When J was born he was a yummy, pink, "normal" bouncy babe. He did all the usual baby stuff - burbling, smiling, growing etc and he hit every milestone bang on. It wasn't until we were on a camping hol (Camping? Camping? Abroad? With a toddler and a 6 month old baby? You see - we were pretty laid back then!!!) Sorry - yep, camping holiday, when J started crying excessively. Awake on the hour, every hour through the night (you must have hated us, camping neighbours!!). When we got back to the UK, J started having strange little episodes which looked like the tiny-baby startle reflex: stiff body, arms flung out repeatedly, followed by the most primal crying we'd ever heard. To cut a very long story short, we were lucky enough to see a GP who took us seriously (Infantile Spasms is frequently misdiagnosed as colic as the external symptoms look so mild, when actually, internally, the poor baby's brain is frying); we were referred to a paediatrician; J was subjected to a myriad of tests and we ended up with a diagnosis of Infantile Spasms. Google it. It's not a pretty form of epilepsy.

We were told he'd probably never walk or talk.

Many months, hundreds of seizures of varying types, several horse-strength drugs, 5 different hospitals, an ocean of tears and a shattering of everything we thought we knew about parenting later, J's seizures were controlled and we were sent out into the world with our 18 month old second-born. Put it this way, J was a very lucky boy to come out the other side with "just!!" Autism.

So, as painful as that lot is to write, even all these years later, I'm beginning to wonder whether this anxiety, this fear, is not just a result of J's autism but as a result of a huge amount of brain trauma at a very young age. The neurobiology of fear is not something I ever thought I'd be avidly reading about on a rainy Thursday morning (with a kitten on my shoulder, incidentally - new family member - aaaaaahhhhh!). I could draw you a picture of the amygdala and the frontal lobe and various other brain structures if you were interested. Will it help J? I don't know. I do know that nothing we've tried up til now has helped J's anxiety. There must be someone, somewhere who knows about this shit who can help to ease J's fears and loathings. I'm ok with his Autism. I'm not ok with his Fear. I smell a mission coming on......I'll let you know how I get on.

In the meantime, here's another bête noire - a cute one though, our new kitty, to remind me that life goes on....

The Simplest Things.....

2011-04-07T12:46:00.009+01:00

Apologies for the slightly blurry pic and the sugar-sweet flavour of this post, but these 2 little cards have made me smile every time I've looked at them. These were my Mother's Day cards from the boys.

The colourful one on the right is G's offering - so pretty and his best, most careful writing. Typical, G, though - the words at the bottom say "Warning Flowers may fall off". Ah, bless his soul! My lovely first-born - worrying, as usual. OOOOOOOh I adore that boy!

The green one is from J, featuring a whizzy cut-out lift with all the various buttons. All his own work - carefully ruled lines and his very own choice of words "Thank you Mummy for loving me. Love The Dude". This instantly made my eyes overflow with happy tears - all I want is for him to know that he is worthy and he is loved. So loved. He obviously gets that!

There aren't many pats on the back, financial rewards or cash thank you's in my line of work. These cards, however, are worth more to me than the fattest of bonus.

The importance of TARTS - how to communicate with a child with autism

2011-03-30T13:03:00.013+01:00

I've mentioned before that J's "tribe" of trusted people is pretty small. Miniscule, actually. For some reason, though, now seems like a good time to help to give J the opportunity to expand that tribe a little bit. To teach some more people to get a little closer to him. And to teach him what on earth to do with these people (or "Yakkity Yaks" as Temple Grandin calls all non-autistic people - love that!). If he wants to, of course. But I want to make sure that I give him some tools to make that choice for himself.

We've had a tough few weeks. J has been anxious, tearful and demanding. I think he's been going through a development surge and this always rocks his, and therefore, my, world somewhat. The upshot is positive, though. The upshot is that J has started drawing people into his wonderful pictures. Initially clumsy stick-men, which are totally at odds with his incredible 3-D drawings, and now they're getting more and more detailed. He has been having structured play sessions at school with 2 children from the mainstream class. People are beginning to feature more in J World. He still walks though a crowded street as if he is the only one there - anyone in his way is knocked into without him even noticing - but in less-stimulating situations, I'm sure he's taking more interest in his fellow humans.

So, Communication. Sheesh. Sounds so easy to those of us who do it so naturally. "To have a two-way conversation with shared meaning". Simples. No? Well, no, actually - easy if you understand body-language, facial expression, tone of voice and a whole stack of non-verbal signals. Easy if you understand social rules. Easy if you're not living in a world of sensory brouhaha where lights flicker and dance, sounds boom and swoosh and deafen, balance wavers and your body is in a constant state of red alert. Many people with autism are completely non-verbal for their whole lives which is entirely understandable when you take that lot into account. J, however, is verbal. When he chooses to be so. Unstoppably verbal at times - sometimes the wrong times (shouting "A Boob!" at the top of his lungs while grabbing one of mine in his brother's class assembly last week - probably seemed like a perfectly OK conversation opener to him. His brother and 239 other school kids begged to differ!!! Poor G).

For us, his parents, learning to communicate and connect with J has taken time, patience, trail, error and a whacking great dollop of understanding. We still have days when J has metaphorically locked the doors and thrown away the key to J World (on these days he - literally - makes signs saying "Shut Happens" and sticks them on his bedroom door!). Most days, however, we sing; we dance; we enunciate; we think out of the box; we talk to J indirectly though Claude (really); we act like twats (no shit!); we communicate with our son.

But how on earth do we now teach that language, that many layered..."thing we do" to others?

Osmosis is the simple answer. Just being around us for hours and hours and days and days and getting into "The Zone" with us. Not particularly practical really.

So, after about ten rewrites and a pile of screwed up scribblings on the floor around me, I've come up with a few basics. A beginner's guide, if you like, to connecting a bit with J.

That's where the TARTS come in. (ooh how I love a good acronym - is that what they're called?! Lettery thingys - you know what I mean.... . The famous Committee for the Liberation and Integration of Terrifying Organisms and their Rehabilitation Into Society - still makes me LOL most unbecomingly. TARTS, however, is one of my own!)

Trust

Attention

Respect

Time

Sense of Humour

I'll try to keep this simple - God, I really am a "Yakkity Yak"!!

Trust

Earn it. Without it J will not connect or communicate with you in any way, apart from possibly pushing you out of the door!

Don't talk loudly, scruffle his hair, pinch his cheeks, or, God forbid, hug him uninvited or you will be written off as a threat. Don't demand eye contact but do be on his eye level to receive it if he feels brave enough to give it. Be predictable.

Attention

Yours and his. You'll have to work hard to gain J's attention sufficiently so that your voice doesn't sound like Charlie Brown's teacher to him, amid the sensory chaos going on inside him. Pay attention to any non verbal signals J is giving you. He may be speaking to you but from the next room in a whisper. The best way to get his attention is to mirror - without taking the piss - what he is doing. If he is humming quietly - try doing that too. If he is drawing a train - draw one too (on your own bit of paper of course). If he wiggles his head - wiggle yours.

Respect

Remember that he is in the room - however much he is trying to be invisble.

Respect what he has to go through to make the simplest connection with another human being.

Don't be embarrassed or frightened of the silences. A lot of people are.

Time

If you ask J a question it may take him 10 times longer than a "normal" child to answer. Give him that time. Just because J doesn't answer you - please don't answer your questions for him. Try rephrasing the question and waiting for a response. Visual is usually better than verbal - try writing down a sentence, drawing a picture...

Little and often is the best way to get to know J.

Timing is also important - I never ever ask J anything about his school day until he's been home for at least half an hour.

Sense of Humour

J is a cheeky little monkey and loves being a cheeky little monkey! Nothing amuses him more than someone falling off their chair! Banana skin humour works. Say the wrong word and let him correct you. (Try not to laugh obviously when he shouts "A Boob" because otherwise my poor 41-year-old appendages will never recover!)

So there it is! A very basic guide to connecting with J. It's a big ask of other humans - we're all so busy. But, once you've got J's trust and attention, you can start pushing the boundaries a bit and then the communication will come. He's a great kid. It will take time and I may be biased, but it is definitely worth the effort. And the more people who understand these basics: the more practice J will get at interacting with other people. You never know, you might even be allowed an exclusive membership to the "Tribe"!

Some Days......

2011-02-28T20:14:00.004Z

Some days..... are totally shit. Like today. Some days autism wins, totally squashes me and leaves me like a rabbit in the headlights which are glaringly spelling out just how cruel this whole thing is. It's just too big sometimes. Some days I'm small and f**king angry and fed up with nothing being simple, with having to trouble shoot every little trip to the bloody toilet and every single time we need to walk the 50 metres out of our gate to get a pint of sodding milk. I don't want to rush, full speed to our top floor because J is trying to follow the cat out of the window onto the roof. Panic panic panic (all on the inside, you understand: to J I look calm, almost nonchalant, as I lure him back inside and reconnect the "child proof" lock). It's not fair and I want to curl up in a corner and cry and make the autism go away.

So, half term has come and gone. It's actually been lovely. J even got invited to a party - and went - and loved it! And why has it been lovely? Because every blinking single waking minute has come with a visual schedule and a shit load of patience, and making a million bloody paper trains and listening endlessly to talk about video games that I don't care about - just to keep the peace. Oil the wheels. Keep the boys happy. We've got through it but I'm hollowed out with the effort that it's taken. And it was only a week long. And the bruises.... and the fact that my whole body aches from carrying and comforting J when things have inevitably wandered off-schedule... I'm just tired. Tired to the inside of my soul. Numb.

And tomorrow I'll be fine. It's ok - it really is. I CAN do this. It's not a thankless task because I see the difference that every little effort makes to my kids. It's not a perfect life, but it's ours. And I'll bring in a JCB to clear all the crap out of the house - restore order. Me and Claude will get back into our routine of blissfully free, battery-charging walks in the park. Spring is coming - thank F**k. It'll be fine. No fixing required. Normal service will be resumed.

Labelled With Love (Alphabet Street?)

2011-02-09T13:20:00.020Z

Tall, stumpy, beautiful, minger, fat, skinny, clever, thick, odd, boring, quirky, loud, lazy, blonde, ginger, selfish, slutty, bald, hirstute.... Labels are all around. They are attributed to us to mark out our differences to the herd so that we can sort out life's rich tapestry into pigeon-holeable categories. Us humanoids are quick to judge and categorise - presumably some deep-rooted self-preservation instinct.

However, the subject of labelling kids - to willingly attach a label, highlighting their differences, to your own flesh and blood - brings a whole orchestra of tooth-sucking and "expert" (you know the type I mean) opinions! "There's a label for everything these days", "ooh people are so quick to label their children - we're getting so American"!!!!! "It's all to do with Bad Parenting" (?!!!) There are all sorts of negative articles about the stigma and damage that labels can bring.

When I was at school I can't remember any of my classmates sporting any clinical diagnoses of anything. There was always the "square", the "boffin", the "thicko" or the "weirdo". Yep - who needed educational psychologists - anyone slightly different and we just made up our own labels and stuck them on with super-long-lasting glue. Kids are pretty unforgiving. Differences scare them. Their form of self-preservation is group attack. Horrible. It makes me sick to my stomach that I might have had a part in this filthy show of human nature - I wish I could find those poor kids and apologise, be their friend, protect them.... Sigh. And what happened to them? Did a whole school career of being negatively defined by their classmates lead them to happy and fulfilling lives - god, I hope so. I hope they found their dreams and shouted "F**k You, losers - look at me in my big shiny car with my wonderful career and perfect life, you cruel bastards". But let's get real. They possibly have lives pitted with low self esteem, trust issues, depression etc etc etc. Oh how sorry I am. I just wanted to be "normal", part of the majority....not noticeably different...

Fast forward to now and most classrooms have at least one kid with a diagnosis of something: ADHD, Dyslexia, OCD, Dyspraxia, ASD - some kids even have two or more labels since a lot of these conditions go hand-in-hand - then they get a special collective label - "Alphabet Kids". Jaysus. Who knew?

So J is "labelled" with ASD (an Autistic Spectrum Disorder). High Functioning Autism. He has a Statement of Educational Needs. He gets Disability Allowance. He attends an ASD specific unit attached to a mainstream school. He gets speech therapy and occupational therapy. His label marks him out as different to "normal" kids of his age. And different he is - quirky, hilarious (his favourite word, incidentally!), scarily clever, socially inept and unable to deal with many everyday situations. His label is not debatable - he looks like an angel (when he's not constantly picking his nose!) but his "differences" are setting him apart from the crowd more and more as he gets older. However, he is in the right place, getting the right support and spends several sessions a week in a mainstream class (with support).

I have no issue with J's label and don't think I'd find anyone who does because his autism is fact. It is thankfully recognised as one of the big hitters these days. The ASD label brings much needed help and support (in some areas but not others....whole other post...grr)

It's the kids who are on the cusp of "normal" that fall through the gaps. The ones who, to all intents and purposes, can look like they're coping in a normal classroom setting. Many of the diagnoses that encompass what, on the surface, looks like "bad behaviour" are the tricky ones - this is the grey area that causes the tooth sucking debates. A lot of the behaviour looks like an exaggerated version of normal kid behaviour - figeting, bumping into things, hair twiddling, constant trips to the toilet, impulsiveness, lack of self control, too much talking, rudeness to figures of authority........ you get the idea. In a society where One Size of Education is supposed to Fit All (unless you're minted and can go Private) these Square Pegs are going to come to light. Particularly when they reach Secondary Education where teachers take no prisoners - it's all about results and not at all about individuals as far as I can gather (Shudder). This is where the debate comes in. Should they be labelled? Would a label make them feel more different or would it be a relief to them to know that they're neurologically programmed slightly differently to their buddies and can get some extra support? Would they grow out of their behaviour eventually without a diagnosis? Would a label become a self-fulfilling prophecy?

I really don't know the answer to this. I've thought about it a lot. I do wish people didn't use that word "Labelled" though - it sounds like a Stigma which is crazy considering the fact that many really successful people have/had similar conditions: Einstein - possibly Aspergers/ADHD; Mozart - possibly on the autistic spectrum/ADHD; Gary Newman - Aspergers; Stephen Wiltshire - High Functioning Autism; Daryl Hannah - mild autism; Tom Cruise - ADHD.... The list goes on. If the L word was replaced with "Recognised as being a perfectly acceptable and wonderful human being who struggles with a few areas of life and could really do with a bit of help now and again and a bit more understanding and a lot less judging" then that would be make the debate a no-brainer! To my mind - my adult mind - being different is just fine. Great, actually. I'm drawn to quirky interesting people. I love eccentrics. I've never particularly liked conforming. But kids hate to be different. So what would a label do to them? To their self esteem?

Actually, I think it depends on the individual. Differences are ok. It's down to whether those differences are causing an impairment for the child or not. Are they stressed out of their minds? Do they cry a lot? Is their work suffering? Are they getting told off a lot in class? Do they struggle with friendships? Are they being labelled anyway by the other kids? Are they angry and frustrated at home? Are they getting less and less invites to parties/playdates? If any of this is the case then, as parents, and knowing that there's help out there (and "help" doesn't always mean drugs - there's a whole host of other methods/therapies etc as well) , I think we'd be very very wrong (and cloyingly British!) to brush our concerns under the carpet and ignore the situation and refuse the label. If the child is quirky, but happy then all power to them but please please please watch out for any signs of bullying when they get into secondary school.

Blimey, it's a minefield. And here's the skinny: I know a little boy who is struggling. He says he's rubbish. He hates school. He finds it very very hard to sit still. Friendships are tricky for him. His self esteem is at rock bottom. He is hugely knowledgeable about the history of video games. His peers sometimes call him a cry baby. He has a lot of irrational fears. He is extremely bright and funny. He is very over-sensitive. He finds change very hard. He has a brother with autism. He is different. His parents don't want those differences to be seen as negatives and have started on the quest to get him some help to be happier. They have come to the conclusion that if a label will help and therefore make his life happier, then bring it on. He's a very loved, loving and totally cool kid. I should know. He's mine.

Control - Too Much, Too Little and a Happy New Year

2011-01-05T10:21:00.016Z

Call me an old grump, but I'm not a big fan of New Year's Eve. I actually think I might be slightly allergic to it these days. All that expectation - a whole evening of waiting for the 2 frenzied minutes after the chimes have expelled the old and struck in the new, singing songs that nobody really knows the words to and then hugging drunken mankind. This fills up a couple of giddy minutes and then there's The Lull. The deflated pause where no one really knows quite what to do with themselves after all the frivolity has abruptly ended and you suddenly remember that mixing the grape and the grain is not clever. So what do we do.....? We start making the Resolutions....give up smoking/give up drinking/lose the Christmas podge/start exercising/become a supermodel/stop being lazy/stop all the fun stuff/promise to start supplementing my diet with health-enhancing seagull plop and other nasties..Yadda Yadda Yadda. Don't get me wrong, any other day of the year I'm right up for a good party. It's just the unrealistic vows of Control that the New Year brings with it: I WILL control my curves, I WILL get my life under control, I WILL make my body a temple...... All of this imposition of Control gives me the hump.

You see, Control is a big thing in our family. It runs our family sometimes. I don't like it. I've said before that I believe Anxiety is central to J's autism. And this anxiety stems from Control - J's desperate need for it and his feeling that every aspect of his life is lacking in it. The more out of control he feels, the more control he seeks.

"The need for control plays a huge part in the lives of all children with autism. Fear of losing control can trigger everything from anxiety to anger, to repetitive and challenging behaviours. Their need to maintain control can manifest in rigidity and strict routines. But if they have control then, invariably, the parent has lost it." (John Clements, Clinical Psychologist)

And ain't that the truth! The Christmas season is particularly challenging for J and his buddies on the Autistic Spectrum. I must add here that J now has several Christmases under his belt and each year he enjoys aspects of it a little bit more than he did the last time - he's not totally Bah Humbug. But he certainly finds it difficult. Aside from the prolonged build-up of mass excitement, the odd traditions (a tree indoors? are you blinking mad?!),the family visits, the strange act of having to sit at a table for meals (hot damn - is that what it's for?!), the hidden and often unwelcome "new things" that are called presents..... aside from all this, life is just thrown completely out of routine for a week. Sigh. J depends on his routines like he depends on air to breathe. Strangely, the more out of control life is for him, the more completely he surrenders to its loss at the time. To anyone other than me and Dave, J is taking life in his stride on the off-schedule occasions (holidays, large celebrations, first year at new school - all join Christmas on the list of challenges). J is quiet and biddable in these situations - he makes a bit like a fawn when it's approached by a predator - quiet and still. Very little eye contact and not a lot of speech (I know fawns can't speak - Bambi? Oh deer! Just get with the simile!).

And then Christmas is over. And then it's Dave's birthday. And then it's J's birthday. And then it's New Year.

And then it's all over. The coast is clear. Routines are reinstated. And then it's time to regain Control for J. Not being a brain surgeon, I'm making a bit of an uneducated stab here, but it's something to do with the Limbic System (regulates anxiety and memory) and its lack of communication with the Frontal Lobes (emotional control centres) that means that the autistic "pot of out-of-controlness" (that's my own scientific term!) does not self-empty with time. For J it's full until he empties it. And that emptying - regaining of control - is done when he feels completely safe. That is, when he's at home with me or Dave and, of course, Claude! We call this "The Fallout".

The first stage of this is endless drawing. 2 whole reams of paper in the last 10 days. These drawings used to be done by us, directed by J (see Everything Starts With an E). Then they became J's own intricate, perspective-perfect drawings of lifts. And now they are beautiful, detailed pictures of tube trains and stations. J has total control over what goes onto the paper. There's no uncertainty when you are in control of something (and with loss of control there is an overwhelming sense of uncertainty). My favourite picture is of the inside of a train carriage - fully detailed, doors, windows, and signs. With just one empty seat in the middle. When I asked him about it he said that it was "my seat". To him no other seat matters - he's not interested in his fellow passengers. In his drawings he can even control whether or not there are any other humans in his world.

Stage 2 is the Control of Mummy. It's quite common for kids with autism to use their parents as tools. When J doesn't want to touch something, he'll direct my hand to it instead. For J, if he can't control anything in his life, the first thing he wants to do is to control me. This goes against all parenting advice - "control that child", "show them who's boss" blah blah.. It's amazing that one so small can exert power over an adult to such a degree. The Control of Mummy phase has recently involved J holding me hostage in which ever room he wants to be in and sitting on me! I do love the cuddles but this control form means that I'm not even allowed one inch away from him. It's a godsend that I have good bladder control - extricating myself for a little penny-spending trip can take time. If the doorbell rings and I have to answer it, I have to carry a screaming, kicking J downstairs with me to the unwitting visitor (our postman must think I'm the worst mother in the world!). Parents are often mockingly criticised for being "afraid of their children's tantrums" and, Yah, Hello - guilty! J's meltdowns can be pretty scary. This is a whole other league to "normal" tantrums. This is acute fear and desperation. I tend to weigh up whether a tantrum is worth it or not.

I sound crap, don't I? Well, we've had 3 days of this now. Luckily G was safely out of the house at various play dates so neglect wasn't involved. This is all more measured than it sounds. J went back to school today. Full routine has now been reinstated. I have drawn up a visual schedule for the day's after-school activities - none of which involve taking me hostage. Boundary time! 3 days out of my life to help J get back on track doesn't seem too high a price to pay. If you imagine a world where nothing is ever certain; people are never predictable; your senses are continually shot to pieces and your one and only hope of feeling ok about yourself is your mummy....Well, sling it, SuperNanny! I've been accused of being both over-protective and molly coddling in the past. All I can say is that I'm doing my best. It breaks my heart to see my own flesh and blood in a state of high anxiety. Of course I'll do whatever it takes.

As a footnote, I just want to tell you one little story about J's need for control - an illustration of what on earth I've been wiffling on about:

A while ago - and not for the first time, J slipped off his precarious perch on the bannisters and fell backwards down the stairs. He was battered and bruised but physically ok. The subsequent crying, however, lasted for well over an hour. Obviously, falling downstairs is total loss of control. The only way that J could regain control was to reenact the whole incident in his own control. Yep - he wanted to throw himself back downstairs. Clearly, I wasn't going to let this happen. However, by putting in a few boundaries but letting him have the control, peace was restored. I put a large heap of cushions at the bottom of the stairs and let J chose whether he wanted to throw himself off stair 2 or stair 3. His control. My boundaries. Bazinga!

So, sorry - this has been a longy. It's a big issue, Control. Thanks for bearing with me. Along with saying Happy New Year I'd like to add that I think we should just all keep on trucking. Nirvana can wait. Do whatever rings your own particular bells. Keep your head above water. Now, who's for a great big January party?!

Loud and Proud - Happy Christmas!

2010-12-23T16:28:00.004Z

This is J in his Christmas play - Babushka the Musical.

Two kids go before him and then....dramatic pause...a bit of a flick through his laminated words....a little false start.....and he's off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! May not look like much but 6 months ago I wouldn't have dreamed in my wildest dreams that he'd be able to tolerate being in a room with 300 adults alongside his mainstream peer group, let alone perform perfectly. That's my boy! I'm so proud of him.

2010 has seen J turning from a anxious little knot into a confident, funny, happy, train-obsessed (yep - got there in the end!) nearly 6 year old boy! He's even recently agreed to upgrading from his much-loved and long-hung-onto cotbed to a spanking new set of bunkbeds (his "6+ bed" - all to do with Calpol, apparently...?!) He insists on being called The Dude these days and dude he is! Rock on, Dude - I have a feeling that 2011 is going to be your year!

Happy Christmas to all xxxxx

Ten Ways to Live a Quieter Life (or How to Retain a Shred of Sanity!)

2010-11-25T11:25:00.009Z

Don't get me wrong, this is in no way a preachy, smug lecture - purely a mental note to myself. One man's meat is another man's poison and all that. What works for one child doesn't necessarily work for another. So, in no particular order, these are just some of the things that help us to help J:

Dust off your sense of humour. The comedy stair-walking mime is an essential string to my bow, as is the perfect arm-pit pump! My Vic and Bob-style "Oh, I fell" move has got us out of many a sticky corner. For J, people and animals falling over is hilarious. Not very PC but funny, nonetheless. Sometimes distraction is my only weapon against an all-out meltdown. Unfortunately there are no guarantees that this will work and I often end up looking like a prize plum! Our household is quite a noisy one. J's volume control is either set to very quiet or very very loud. A common sound chez Hughes is that of giggling. I love that. J responds well to a bit of banana-skin slapstick and I'm delighted to say that he makes us laugh a lot too.
Street cred, looking glam, walking the walk, talking the talk: forget it!!! Worrying what people think is exhausting. Grow thick skin and embrace your inner plonker.
Take Hart - yep, find the artist within. Stick men are fine. Actually the simpler and easier to understand, the better. Visual schedules are all to J. We never leave home without one. Sequencing is a problem for people with autism, so a clear reminder on a bit of paper in J's pocket is very reassuring. We show him: who is going, how we're getting there, where we're going, what we'll do there, how we'll get back and that we're getting home at the end of it. For a chap with high levels of anxiety, this is essential stuff.
Patience is more than a virtue. Breathe, Breathe, Breathe. It will soon be over. Breathe, Breathe, Breathe. Count to ten. Count to 100. Count to 500. At this point, leave the room, run outside and kick something soft really hard (try to avoid the cat). A lot of patience is required with kids generally. Multiply that by 1000 and you'll need that much patience. Study Mother Theresa, Ghandi, Take That - whatever. Just be patient!
The Sound of Music. God, I love that film. It's like a big hug from your granny. Sorry, I digress....... Music is magical. Sometimes when asked a question like "Do you want sausages or chicken for your tea?", J appears not to hear me. I try again, clear and precise. Still nothing. I try again, this time with eye contact at his level. Nada......... Recently, I've discovered that if I sing the question to him (particularly in the style of Julie Andrews), I get an answer!! Normally a musical answer, but, hey, sausages it is lalalalala!
If you are an ungodly fishwife like me and a little swear bomb accidentally falls from your lips when you stub your toe/skid in spilt food/loose patience (sigh)..whatever... make sure that the word can be easily converted when it is inevitably echoed back to you - duck, spit, wrap, dollops, kiss, boring duck wigs (answers on a postcard for that one!) etc - you get the picture!
Unless you are a total masochist, never EVER go to a park, playground, swimming pool etc without phoning ahead to check that it IS open and the wrong type of leaves/staff plague haven't forced it to close unexpectedly. Hell hath no fury like J with an unfulfilled expectation. If you forget to do this (like I do half the time), laminate a card with the word "OOPS!" on it. Carry it everywhere. Actually, just get this word tattooed onto yourself. It is really useful. It is teaching J that some situations don't go to plan and that us adults do make mistakes.
Don't be precious about your house. Even after 3 hours of (boring boring boring) housework, it will look like a gang of rioting mongeese have rushed through it within ten minutes of the boys coming home. Wait until your home looks like Steptoe's yard before unearthing the hoover - take a photo when it's clean and tidy.
Remove your head from your arse now and again. You may be totally embroiled in the intricacies of caring for your kids but your friends and family deserve time and attention too. I'm bad at this. Life goes on outside and you need to show these lovely people some love and appreciation for everything that they do (you know who you are xxx)
Expect the unexpected - good and bad. My boys amaze me every day - little acts of kindness from G; a new song from J; a brilliant new drawing; an entire draw-full of socks all over G's bedroom floor; a new piece of poster-paint art on our white (bought pre-kids!) sofa; a sudden punch-up over who is and isn't allowed in the living room (give me strength!); a misplaced poo; a very very long game of hide and seek (!); feeling like you can't take another minute when suddenly it all gets better again; and a sudden "I love Mummy" from J...... It rarely happens how you think it will.

It's a big learning curve. The Autistic Spectrum is massive. There are no guide books on your individual child. This list grows all the time and changes continually. The secret is to go with the flow and remember that you'll get it wrong a lot of the time. But no cash bonus/medal/lottery win etc can possibly match the brilliant feeling you get when you get it right!

From Limbo to LaLa

2010-10-14T10:46:00.018+01:00

My map-reading skills never were up to much but this is ridiculous - I can't get out of this sodding one-way system! The problem is that I can't find the correct map. I've been floundering about in this rough terrain for a while now and I'm beginning to realise that I should stop looking for the damn map and just start running before the wind changes and my brain irreversibly turns to custard. See, the thing is that I'm a bit stuck. The area I'm lost in is that Limboland between J being diagnosed with autism and the place where everything stops starting with an A and I get on with Life.

This first chapter has been a massive learning curve of acceptance and discovering what works for J and for the whole Hughes family. It's been a rollercoaster ride. There have been flurries of great activity - trouble-shooting those terrible times when it's all gone a bit Pete Tong - for J, for G, for me and Dave - finding solutions and putting them into action. There have also been nice even plateaux where we've downgraded from Red Alert to Floodwatch and we've been able to breathe a bit more easily.

Towards the end of 2009 things were really tricky with J - it was virtually impossible to connect with him. He obviously felt out of control with a house move and a new school and was compensating by exerting his "control" over me very effectively! I seemed to be losing him forever to that inexorable lure of self. It didn't feel at all good. Things were so difficult with G (a whole other subject..). I had a good look at all the various "solutions'. Moving us all to a deserted island where we could run wild and free, minus environmental assaults, minus society's constraints and judgements, riding wild horses and clean waves and generally lolling about and being at one with nature - unfortunately was not an option. So, more predictably, I instigated specialist diets (only difference it made was a big dent in waning bank balance); then 20 weeks of The Listening Programme (which amounts to 50 hours of J listening to acoustically modified music to reach the parts of his brain that nothing else can reach and was fantastic, incidentally); then we managed to get Sensory Integration Occupational Therapy included on J's Statement (which means that the LEA have an obligation to provide this for J - YAY!). Timers, strong routines and visual schedules have taken centre stage, as usual. We've moved back down to Floodwatch - setting all the daily routines in stone so that everyone knows what to expect and when to expect it and we all feel in control and fine and dandy.
Hunky dory.......................?

AAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHH! No. Not effing Hunky Dory at all!! I know that at least one half of Hughes family members are happy with this battened-down, reined-in, orderly living, but, I, for one, long for spontaneity, disorder and surprises once in a while!!! A crazy world where friends can casually drop in for a coffee without causing an anxiety attack in J. To even consider J having a sleepover at his grandparents' houses. A world where neighbours could casually invite J round for a play and he'd want to go. To be able to go on holiday and not have 2 weeks' fall-out afterwards where J is frantically reinstating his sense of control. To go to a wedding/bbq with the boys and be able to talk to grown ups without constantly shadowing J to make sure he doesn't escape. A world where I don't have to make "lifts" out of the sofa cushions for 2 hours each day of the summer holidays.......................
This list could go on and on. You know I love my boys for exactly who they are, Right? I do. I really do but in this Limboland place I still sometimes secretly wish things were different. Easier. I miss what I thought I was going to have but never will - if that makes any sense. And then I feel guilty. And that's where I become stuck. Guilt is such a useless emotion - doesn't actually solve anything. Just makes you feel crappy and hopeless and sorry for yourself. Depressed even.

The route that I've been hunting for has a big flashing Las Vegas-style signpost, pointing all the way out of Limboland and directly into LaLaLand. Just like that! Unfortunately, however, it's dawning on me that this mystical place doesn't exist. I'm living my life like a waiting game. Waiting to find The Only Way to make J's life better. Waiting to find The Answer to why G struggles with his life and to fix that for him too. Waiting to win the lottery. Waiting to stop feeling guilty for never being enough or doing enough for my kids. The truth is that we're HERE. There are no big answers apart from getting on with getting on. Good enough IS good enough. (can I repeat myself any more to make my point?! can I repeat myself any more to make my point?!)

This poem, by Emily Perl Kingsley sums it up nicely:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Claude

2010-06-20T18:05:00.026+01:00

This is a long-overdue post about Claude, our beautiful, biddable, chilled but chipper, lifesaver of a Labrador. I've meant to write about him for a good two years - I've stood up in front of roomfuls of real-live grown up people twice now to talk about him for fundraisers for Dogs for the Disabled (more on that later) but somehow words have evaded me here up til now. I'm very aware that blathering on about one's pets can seem like a terrible affectation - nearly as bad as knitting jumpers with your beloved pet's face emblazoned on the front - so, although I have a lot to say on the subject, I'll try to keep the fluffy eulogising to a minimum (and won't even include pictures of me wearing my Claude knit!!! - joking - really...!)

Claude is now a fully grown dog of 2. He's gorgeous - breath like a halitoid tramp - but gorgeous. When I say that he is a lifesaver I'm exaggerating a tad (Drama Queen - MOI?!) but he's definitely not just a dog. He's a family therapist, chief comforter, arbitrator, speech therapist, marriage guidance counsellor, jester, personal trainer and all round good egg. The phrase "man's best friend" doesn't come from nowhere. He is man, woman and boys' best friend around here (actually cat's as well - he and our feisty feline, Sass, are inseparable). He is my constant companion and rock - happy to share my joys and put up with any teary down days. He's always delighted to see any one of us and - even half an hour's absence merits a full hopping, wagging, toothy-grinning greeting from Claude. He considers it his duty to see J onto the school bus in the mornings and to sit waiting by the gate for him - rain or shine - when he returns. He hops into bed with G for his morning cuddles while I get J up and ready. He is gentle and patient and has "turned" many a dog-phobic child into one who clamours for his very own Claude! Phew - am getting carried away here. Let's just say he's pretty great for one who needs his doings picked up in a plastic bag!

It all started when we were wading about in the seeming quagmire of J's new diagnosis. As an antidote to the reams of medical jargon, "cures" and therapies that I'd been trailing through, I read a book called "A Friend Like Henry" that my sister had sent me. It is the story of a family wrestling with their son's fairly severe autism whose lives were turned around by getting a dog. This lovely (and true) story prompted the next flurry of Googling and researching and we came across "Autism Assistance Dogs". These dogs are incredible - trained to keep the kids safe, break tantrums and to be friends to kids with autism - but, sadly, extremely few and far between in this country - only 2 organisations are currently training these remarkable creatures (Dogs for the Disabled being one) and the waiting lists are enormous. Along with the fact that Dave and I are hideously impatient people, we also decided that a dog to specifically help J would only serve to tip the precarious balance of our family even further at that point. What we really wanted was something to take the prime focus of our lives off J's autism and to help us to be us again - G needed a canine friend just as much as J and, acually, so did we!

More Googling led to the discovery that not all breeders are happy to hand over a puppy to a family containing a child with "autism - that's mental illness isn't it - sorry love, couldn't do that to a dog"!!!! Really - thanks Mr Frederick Ukker of Farnham! However, we'd learnt early on in J's life that our gut feelings tend to be worth sticking with, and having decided that only a Black Labrador would do, I persisted until we found the beautiful Poppy and her pups, residing in palatial splendour on the Putney banks of the River Thames. Poppy's owner couldn't have been more helpful and invited us to bring G and J over to hang out with the puppies. After all, J had never even so much as glanced at a dog so we had no idea whether he'd even like creatures of a canine persuasion. While G and I melted into fits of cooing over Claude and his plump, wagging siblings, J took no interest whatsoever and wandered off down the garden. Damn Damn Damn. Oh, but hang on, this complete lack of interest was by no means reciprocated by Poppy who had volunteered herself as J's guardian for the entire duration of our visit. She was never more than a whisker away from him for the hour that we were there. When J sat down, Poppy sat down. When J ran, Poppy ran. Now and again J would place a hand on her head, without looking at her. There was some kind of magic going on here and, being scientific types(!), that was good enough for me and Dave.

A few weeks, many visual schedules and "social stories" later, along with J's now obsessive viewing of the video clips we'd made of the puppies, we collected a 12 week old Claude. And that.... gulp...tear (still gets me).. was the first day that J ever spoke to anyone directly. "Hello Claude. You are a dog" - full (and I mean full) eye contact, along with blushes of delight as he bustled around finding toys for our new family member and occasionally rushed off to his letter bricks to spell out his new best friend's name.

It didn't take long for the blanket of love that Claude inspired to envelop us and pretty much everyone who met him. (Would it ruin the moment to add that it didn't take long for the fabric of the carpet to become more dog pee and little black hairs than man made fibres too..?!) Those first few months were by no means plain sailing - it was a lot of fun but tougher lessons were also learnt - cause/effect being one of them when J discovered that if you pull Claude's ears/tail then he squeaks pleasingly. Up to this point, J hadn't associated the pain that he felt when he was hurt in any way with pain that others felt. In autism there is a classic lack of empathy so if J yanked out a handful of my hair and I screamed or if the puppy had his tail pulled and squeaked, J didn't understand that the pain we felt was the same sensation as the pain he felt when he bashed his head/knee etc. I totally drew the line at Claude being hurt so made a very clear rule and a rather fine "social story" about why we don't hurt others and spent several weeks never more than a foot away from J when he was near Claude to prevent any repeat offences - it was knackering but it worked.

The other benefits and lessons are too many and varied to go into in too much detail (that dog deserves a book really) but in short:

- Claude's toilet training gave J's toilet training the impetus it had hitherto lacked - J finally realised that neither he nor the dog would be praised for peeing in a glorious arc across the living room! He also discovered that pee comes from within and is not just a disconnected wet feeling hitting your feet - this after much scrutiny of Claude's "demonstrations"!
- Both boys basked in the loyalty that Claude provided - their squeals of mirth and merriment would bring Claude running to join in the fun, just as their tears and traumas would bring a wagging Claude to rescue them from their woes.
- When out and about with a roly poly puppy, it is impossible to avoid PEOPLE. The world loves a puppy, and however much J would like those PEOPLE to keep their puppy stroking, cooing gooeyness to themselves, the lure of those brown eyes and a wagging tail is too strong for these PEOPLE. J had to get used to the fact that when we were out with Claude, PEOPLE would come and talk to us. It took quite some time for him to become accustomed to this "intrusion" but eventually he began to tolerate it.
- Children with autism can be tenacious and obsessive. Small puppies can be tenacious and obsessive. Give them a tug of war toy and they'll amuse each other for at least an hour. Reeeesult!
- Having a small defenceless puppy in the family finally stopped every conversation that me and Dave had being about autism and kids - we'd been floundering about, trying to come to terms with J's autism and it was somewhat engulfing us. But somehow, by adding in the rhythm of having to walk, feed and water the dog, we managed to break the loop we'd got stuck in.

Suffice to say that we were all pretty chuffed with Claude. He excelled at his training classes, was easy and fun to take out for walks and was happy to be mobbed at the school gates by his very own fan club of kids. At that point Dogs for the Disabled contacted us, inviting us onto the pilot scheme for a course they were setting up, not for Autism Assistance Dogs, but for their PAWS workshops (Parents Autism Workshops and Support) - a general guide to getting the right dog (ok so we'd done this bit and realised we'd been pretty lucky with Claude - not all dogs would be fit for the task); and then, more interestingly to me, a large chunk of the workshops was working with D for D's dogs and being shown how to maximise the relationship between a child with autism and a pet dog!
(look - there's me and Claude on their website!!) http://www.dogsforthedisabled.org/partnerships/Autism_services_for_children
I loved these workshops - the Dogs for the Disabled people really know their stuff and clearly all adore their work. They have a huge enthusiasm for what they do and their methods of training the dogs are fascinating. Using a clicker (little metal thing that makes a clicky sound which indicates that the dog is doing it right, precipitating a tasty reward) - breaking the tasks into tiny, achievable segments and allowing the dogs to work out for themselves what it is that you want them to do, rewarding them grandly at each stage. It is a very gentle way of training, and the dogs LOVE it. I thought it would take ages for Claude to pick up all this training but, within half an hour of using these methods with him at home, he was getting the hang of it nicely. By the end of the first month of using these methods, Claude could do the following:
- Touch his nose to J, when he was having a meltdown. No mean feat with all the yelling and flailing around that goes with this. The point is not for Claude to make like Nanny McPhee and stop the tantrum, but rather for this little soft nudge to give a nanosecond of a pause in J's distress, allowing me to get in and calm him down. Startlingly effective.
- Walk on a double lead, with J holding onto one handle and me holding the other - a total revelation for me to have all the family going in the same direction at the same time!
- Stylishly model new or offensive items of clothing that J is refusing to wear (a school tie being a good example), causing much amusement all round and the eventual acceptance of the clothes from J.
- Demonstrate with gusto how to sample a new, unfamiliar food type.
- Play the keyboard with his nose!!!! Ok, so not strictly what D for D had advised but me and G had a high old time teaching him this and he was mighty proud of his musical prowess!

With or without specialist training, Claude would always have been an exceptional dog. But the training showed us how to get the most out of the relationship between a child with autism and a hound. And that is the point. It is a relationship. An exceedingly strong one - not always noticeable to the naked eye but a very unconditional one. Most of us have so many relationships - with family, friends, teachers, colleagues, people on the street, etc, etc - that we can hardly count them. J's "tribe" is much smaller than most - and will probably remain so for the rest of his life. Give him some pens and paper or a child to play with and he'd go for the first option every time. This is who he is and, although what he lacks in natural understanding of human relationships, he will be able to learn by rote in the future, I believe that he will always be happiest with just a few trusted tribe-members and Claude is certainly one of the chosen few. That dog is truly part of our family and, looking at him as we speak - fast asleep, legs in the air, jowls dream-eating something delicious, Sass snuggled into his neck, I couldn't imagine any more effective "cure" for our family.

Danger Boy

2010-05-05T13:45:00.007+01:00

J refers to himself as "Danger Boy". He likes saying this - thinks it's a big joke. Normally he shouts this with great glee from the top of the (wrong side) of the bannisters, often while wearing nothing but one tatty glove - a perfect superhero! Thing is that J's autism means that he doesn't have the imagination to visualise what could happen if he slipped and fell, that is, even though it might have actually happened several times before. Danger Boy has not a clue about danger but can spell it no problem and write it perfectly in Times New Roman font! Oh, and did I mention that Danger Boy is more than a tad accident prone too.....

I, on the other hand, am Neurotic Woman to his Danger Boy! I see the world like a 1970's safety poster: sharp corners, head-height counters, inclines, wires to be tripped over, pound coins to swallow (yep - that one never did reappear..), bodies of water to fall into or at best slightly splash one's clothing, causing a whole outfit change in J. I'm not naturally like this - I can live by the seat of my pants with the best of them - Hell! I have Viking blood in my veins. Personally I like a bit of adrenaline but, where J is concerned, we've had way too much history for me to be lackadaisical where safety issues are concerned. I'm never far from J when he's in the house but you can guarantee that the second I go and spend some time chatting to G on the trampoline, J will catapault himself from the top of the telly to the marble fireplace, head first.

The simplest trip out can be fraught with danger. Being a superhero, Danger Boy is not a keen hand holder and has a slippery superpower of being able to almost dislocate his shoulders/wrists in a bid to escape, if grabbed. He doesn't like to walk at the same pace as the rest of us and normally trails about 20 yards behind, favouring the outer-most kerb stones to hop along. Danger Boy has been known to skip, without warning into oncoming traffic and likes to balance on brick walls and bollards. Add to that, the rare superpower of becoming invisible in shops.....

Reins! Did somebody say Reins? Dammit - would never have thought of that if several tutting passers-by hadn't proffered this marvellous idea in a "your child is a total danger to himself and society - rein him up, lady" kind of way. Well, hello, do you not think I have a cupboardful of the bastard things - little backpack ones, wrist ones, ones with letters of the alphabet on........ Have you ever seen a kitten wearing a collar for the first time? Well - Danger Boy doesn't do reins. We've tried. Say no more.

Add to this cocktail of potential disasters the fact that J - although he rarely stops moving and has the energy levels of an Ever Ready Bunny - easily becomes overloaded in the sensory department so, at the midway point of a trip to the shops, can suddenly stop sharp, pupils dilated and be almost incapable of walking another step. Up till recently I would carry him home, but at 22kilos my back has called time on this habit.

So we have danger. We have sensory overload. And we have G. G, our ever-sensitive 8 year old has certainly inherited J's share of imagination. He sees danger in gambolling lambs and frequently asks things like "when is the world going to end". He's struggling with his brother's autism and, although he can be sweeter than any child should ever have to be to their sibling, his default setting on the matter is currently one of fury. He gets so upset about J's Danger Boy antics that he often refuses to come out with us. So the end result of one of our trips out is G, jangling with nerves, frustration and fury; J clinging to me like a limpet and me limping like a sciatic nonagenarian. There's many a time that we've crawled over our doorstep and collapsed in a sobbing heap on the kitchen floor.

Straws. Camel's Backs. Something had to give. A few sneaky peaks at the internet revealed a whole world of Special Needs Pushchairs - huge chariots of freedom - with huge price tags to match. So I applied for a grant from a local charity, explaining our predicament. Et voila! One giant sized Maclaren Major Elite with giant sized, special needs-resistant accessories for the beleaguered looking family on the kitchen floor.

Now, this is no stream-lined Smugaboo. No, this is a beast of a thing and might as well have flashing lights and bells, highlighting the fact that it's occupant was in some way different to his peers. But is that any bad thing? J doesn't care - to him it's a rolling sanctuary from the world which he finds so challenging. G is happy a) because "it makes a great telly chair" and b) because he doesn't need to fret about his brother any more. And me? Well, I really didn't know how I'd feel but firstly I want J to be safe, secondly I want G to be less stressed and thirdly, have had enough hard stares, tuts and even some "that child needs a good smacking" comments in the past to think "Sod it, let's give it a go".

We set sail on our maiden voyage for a trip into Kingston. J instantly took to his "Medium Boy Pushchair". G trotted alongside, chatting happily. Nobody tried to run into the road. None of the normal hesitation, deviation or repetition was exhibited. Nobody tried to squeeze through the railings on Kingston Bridge. I managed to buy the 2 things I'd set out to buy. Nobody got lost in the shop. A shop assistant fell over herself to come and hold the doors open. People smiled at us. Cars stopped to let us cross. We even managed an unscheduled trip to the playground on the way home.

And Danger Boy? He wasn't over hyped, he was smiling and repeating to himself "J is safe. It is safe in my medium boy pushchair".

Afterwards my friend, who has a fairly recent spinal injury and is a wheelchair user, asked how I felt, pushing J.

1) I felt vastly relieved that trips out can be straight forward

2) I felt delighted that J's autism doesn't have to impact on G every time we leave the house

3) I felt a bit envious of families who don't have to even think about this type of thing

4) I felt guilty for even thinking number 3

5) I felt surprised by the complete U-turn in strangers' reactions to us when they could see that J had some type of "special need"

6) I felt worried that I had Munchausens by Proxy for being pleased that strangers were smiling at us!

7) I felt sad that J had always felt so unsafe on previous trips

8) I felt really really really proud of my little superhero.

A little bit scruffy, very hairy, one tatty glove at all times - gorgeous!

2010-04-26T13:58:00.007+01:00

My very talented sister took these pics of my beautiful J!

A Dads Perspective

2010-04-07T21:57:00.008+01:00

I asked Kristina if I could write a post from a Dads perspective and she readily agreed. Having asked I then questioned what I was doing, what does that actually mean, in my best Carrie Bradshaw impression - are Dads any different?

I couldn't come up with a definitive answer so I've put together a random selection of thoughts from my point of view. During some limited research (20 minute tea break at work) I found that there are very few, if any, Dads perspective Autism articles on the web. There are some very good blogs written by dads but these don't really get to the nub of Dadness (I'm still not sure this post does). I did find a website for The Fathers' Club, Kent, set up by John Franklin six years ago after he became aware that most parenting support offered was failing to reach the dads of autistic children. Franklin says it provides "a forum for fathers to debate issues, discuss what has worked for them and share best practice" (for forum I read Pub). He says this is a major step for many of those attending because "men are not very good at discussing their emotions and feelings". I have never been but it sounds pretty cool.

To start with, a couple of apologies - I make some huge sweeping statements about Dads, blokes and women in general, these come from laziness on my part, not wanting to constantly write 'with the exception of primary carer Dads, Dads who have decided to stay at home to look after the kids' etc etc - you get the point. Secondly I am an architect so I am more used to pictures than words so if you are expecting the usual well crafted eloquence from Kristina please prepare to be disappointed. Heres a few ramblings:

Nerds United

Having a child with autism is really not very easy. The one advantage we have as Dads (as opposed to mums) is that most of us are natural techies and natural nerds. A lot of autistic kids, and J is no exception, get obsessed with technology and mechanical stuff so for Dads it is really not stressful to endlessly talk about different motor parts for lifts or trains or cars or computer games etc. We actually find it quite enjoyable, lets face it lots of blokes who are non ASD have techie, nerdy hobbies and to be honest are miles more boring than ASD kids, most of their facts are wrong, they get too emotional about all this stuff - hard facts, logic, lists, don't you just love that stuff. Alright most of the time you have to talk to yourself as you get no response, but J is happy, he's sitting still whilst I draw a very (and i mean very) challenging perspective of a lift shaft with a traction motor - seeing as I choose to do this stuff for a living i secretly quite enjoy it.

To be serious though are these obsessions and hobbies and interests that bad? I think golf is quite probably the most ridiculous invention ever, the stupid trousers, the formality, the 'golf captain' - but lots of people enjoy it and it is socially acceptable. Riding lifts for 2 hours though is seen as weird - why? When I was a kid I was obsessed with Lego, not just a bit, I mean 24/7, all the time, made lego models, read about lego, drew pictures of lego, everything was lego - and this was socially acceptable ("he'll be an engineer when he grows up") but somehow some of the obsessions and interests these kids have, and the level of obsession is seen as not 'normal'.

As a Dad of a child with Autism, it is much much easier if you are an 'Inbetweener'. If, as a Dad, you want to live vicariously through your children (mini rugby, football club, tennis club etc etc), then to be honest you're fucked - i'm not criticising this per se, some of my best friends do this stuff with their boys and they all love it - , but if you have a child with autism, you will really struggle to keep up with the 'joneses' and have a normal life, you will live in perpetual disappointment. If you accept and embrace that Nerds United is the way to go, and to be honest why give a shit that people think some of this stuff is weird, then your life will get a whole lot easier. My dream for J is that he becomes a Maths Professor at Cambridge or a computer programmer at Microsoft, these people are supposed to be eccentric, they are supposed to be odd and everyone thinks that's great!

95%

Having a child with autism affects almost everything you do (95%?). There are of course the big hitter items, the very bad days, the very big tantrums etc but I've been thinking more and more about the million little things it affects in our lives.

Most of what we do, most of how we live is in some way to try and reduce J's anxieties and try and have a calm life - it's difficult to give examples but it's things like always leaving work bang on 5.30 to get make sure I get home for bath (my staff and clients get very irate that i am so strict about this), where and how we go on holiday, where and how we go out, the routine, the regularity - the difficulty with describing this is that it is so ingrained and so sub-conscious that unless I sat down and compared our lives to normal people (generally a very BAD idea) it's almost impossible to pinpoint exactly what it is we do.

I had a very big argument with a friend who was going on and on about us going cycling at the weekend and why wasn't i committing to a time/ date etc etc (pub, too much beer!), i was so angry i was shaking with rage, he apologised for going on about it and i sent him this text - 'My life is very particular and restricted with J so I struggle with people questioning what i can and can't do. I don't mind anyone not understanding the day to day reality but i do mind people not respecting what I say I can and can't do'

Double Teaming

There is a well known statistic (although impossible to find where it has come from) that 80 - 90% of couples with an autistic child gets divorced. I think it came from Jessica Simpson saying it on Oprah about her own autistic child and subsequent divorce from her husband (I'm no scientist but that's good enough for me) - anyway, one job for the Dad is 'Double Teaming'. In other words the most successful couples and marriages, if you have a child with Autism, is to work as a team - more importantly to work as the wingman.

Dad's are at work all day and are generally a bit stupid when it comes to childcare but as double teamer wing men we are pretty cool. Kristina and I are like top league basketball players with our blocking techniques (one moving J to the bath, the other blocking the way to the computer). Blokes go on about the beautiful game and the teamwork and passing skills of Brazil, you should see me and Kristina, a seamless, fluid, beautiful, ballet of movement, passing, blocking, dare I say it, herding! It's a military operation to rival the SAS, it's a tag team of Olympic standards - if it was a national pastime (One Man and his Autistic Five Year Old?) I would be up there with John Noakes and Shep easily.

It's important though, as a Dad, that you support, you are the wingman - this is your job, which brings me neatly on to my last thought:

Who cares for the carer?

The most fundamental part of being a Dad with a child with autism is not really the Dad part but being the husband of a wife who has a child with Autism.

I don't know if it is blokeness, i don't know if it's genetic, i don't know if it's a Darwinian hunter/ gatherer thing or if it's just me but to be honest I spend as much time, no more time, worrying about Kristina as I do about J. J has all the love in the world, he is lucky enough to have Kristina. So who cares for the carer - our job, as Dads, is to the whole family and to our wives, as I said earlier we go out to work, we get to switch off - we don't get the constant pressure, the constant barrage of stuff that comes with autism. We get home and we listen, we are a shoulder to cry on, we don't always understand (as I said we are generally a bit stupid) but that doesn't matter, what matters is that it is our job to care for the carer.

There is lots of stuff we can do as Dads of children with autism and I am not suggesting we don't have the love or the emotion or the tears or the pain but we deal with it in a different way and we are able to switch off, all men I know are able to compart-mentalise their feelings, i know very few women who can do this (i told you i made sweeping statements!). By helping Kristina I am ultimately, of course, helping J, there is no point in me just doing exactly what Kristina does, as I said earlier it's all about teamwork and that means that it's our job to be the support, to be the wingman.

And finally...

Most of the time I feel blessed to be the Dad of J and G and the husband of Kristina. Yes it's hard, sometimes very hard to deal with (you should see my beer bottle recycling each week!) - sometimes you want a normal life, I want to take J to the cinema, or to the fun-fair or to a bouncy castle (fan noise big no no). I love him to bits but also I like him - i like his quirkiness (I put him to bed tonight wearing 1 glove which he insisted on?), i like his weird skills, i like nerding, i like joking with him about parking on the wrong level of the car park (got to be Level 10)

Do we live a 'normal' life - no,

Is it easy - no,

Do we live a happy life? - most of the time yes and I would rather have a funny, happy life over 'normal' anyday.

Everything starts with an E (for Elevator):Phobias, Obsessions and Communication (or Every Cloud Has a Silver Lining)

2010-02-21T19:21:00.015Z

The dictionary definition of an Obsession is "something that preoccupies continually, sometimes to a troubling extent". The definition of a Phobia is "an extreme irrational fear of something".

I'm drawn to a dictionary definition - so tidy and indisputable - and these 2 particular definitions neatly sweep the entire contents of some of J's days into a nice sanitised sentence.

You see, these obsessions and phobias are both polar opposites and blood brothers in J's world. We deal with these guys on a daily basis in our household. I've mentioned in the past that J's middle name is "Anxiety" and the obsessions and the phobias order, make sense of and restrict his daily living severely enough for him to be labelled with a "disability".

J is diagnosed with "High Functioning Autism" - a label that I both cling on to like a rock in a storm in case it's ever taken away and am also slightly repulsed by (in a world where it's considered un-PC to call Thomas the Tank Engine's obviously porky, Fat Controller "Fat" anymore, how can anyone think it's a fair cop to call any child "Low Functioning"??). The "high functioning" bit for J refers to a bunch of amazing splinter skills which hint at an unusually high IQ and the fact that he can communicate with language when he chooses or is able to do so. J has a lot of words, knows every street in the area by name, lamp post numbers and bus stop letters, but often, when his senses have been overloaded by new experiences, too many people or too much noise around him, or when he's in his world and doesn't want to let anyone in, often he is totally unable and unwilling to answer the simplest of questions or communicate with anyone at all.

J's phobias are many and varied, strong, ever-changing and increasingly incapacitating. The common denominator is unpredictability and fallibility and they are normally based around levels of light or frequencies of sound. Water moving through pipes in his bedroom wall, sirens, noisy toys, phones ringing, radio interference, car brake lights and things breaking down or running out of batteries are our current demons. These are strong enough phobias for us to have talked to a neurologist at Great Ormond Street Hospital about anti-anxiety medication. Put it this way, J went through a phase of becoming so anxious when he was anywhere near an escalator that he would turn as white as a ghost, his body would go rigid, his knees would buckle and he'd pass out cold. And this was shortly after he was completely obsessed by escalators until one that he was on (what are the blinking chances????!) broke down and stopped while he was on it! His fear reaction, when activated, cannot be chivvied or distracted from and the neurologist suggested that there is a fine line between a phobia and extreme rigidity in thought patterns.... The upshot of our meeting was that we need to weigh up the fact that these meds have extreme zombifying side-effects with the quality of life that J has with living with these fears. The jury is out on a very long lunch on this one.

So back to these obsessions. They begin as delightful interests that seem to come from nowhere - where we find something that J is interested in and makes him happy, sparky and chatty. We have conversations with him about these new things and Dave and I delight in being able to connect with our little boy. And then we have the same conversations 100 times. And then 1000 times. And then the conversations become a necessary part of J's routine and then we have an Obsession. We've gone from a very early interest in numbers and letters, to number and letter games, to number and letter books, the numbering letter books to lettering number books, to numbering and titling every page of a Yellow Pages, to numbering and lettering map books to numbers of levels of buildings to turning every floor and room of our house into a lift with sellotaped (onto our freshly painted walls - ho hum!) numbers and letters, to reliving every numeracy and literacy lesson at his new school in exact detail when he gets home..... There's the odd rogue in there such as knowing every episode of Peppa Pig off by heart, but these deviations from the theme tend not to last for long. Numbers and letters are never unpredictable, totally infallible and J loves them. One thousand curses to the Superstore designer who left out aisles 10 and 11 in Sainsburys - this caused a whole lot of heartache when it was first discovered but we've got used to it now and knowingly gloss over their absence in our journeys up every single other aisle up to aisle 59 (buying a pint of milk can take time!!).

These obsessions of J's have ebbed, flowed and grown and in the last 6 months or so, we have reached the King of all Obsessions - we have found Lifts. Elevators. Pop "Elevators" into a search on YouTube and you enter a whole new world of alternative Train Spotters. J is not alone in his passion for lifts - there's a whole section of society (possibly all of whom have ASD), for whom lifts are the ultimate interest. They have variety - Schindlers, Kones, Otis's, Stannahs, Dovers, hydraulic lifts, traction lifts, floor types, ceiling types, different button styles... But they all go up. And they all go down. Genius! Apparently they are the safest form of transport invented by man - nobody has ever directly been killed by a lift. Forget Legoland, expensive toys or trips abroad, J's biggest treat is a trip to the carpark lifts at the Bentall Centre and each and every fellow passenger is informed (with suitable levels of eyecontact) of lift type, capacity and whether or not it is a "nice lift"!

These 2 factors: Fear and Obsession (and I'm certainly no ground-breaking expert here - it's purely the dark rings under my eyes talking) seem to dictate exactly how much or how willingly J communicates with the world around him. If neither of these taps is switched on in his brain then we have chatty, funny J. If Fear is switched on then we have no communication whatsoever. But we're beginning to see that if Obsession is switched on then we can use it to our benefit in connecting with a sparky, motivated J, but it's a fine line between using it to help and finding that we've dug ourselves in deeper.

So every night, before J goes to bed - strictly ordered bedtime, bathtime routine adhered to - Dave and I take it in turns to sit with J for anything up to a painstaking 45mins, drawing "Lift Books" with him. He tells us exactly - and I mean every pencil mark and dot - exactly what to draw. If any line doesn't meet or form the correct angle we are vociferously informed and the error is erased and line redone. We have made books and books of these drawings. And J has communicated every little bit of them. OK so Dave is an architect but I'm officially unable to draw in perspective so J really has to work hard with me! Not only that but he is learning that we are not psychic - he needs to use language clearly to get to a satisfactory result. And nothing gets drawn without him saying please or when he is raising his voice - see, there's even a lesson in there for tantrum control!!

And these are a few examples of what we've come up with:

Bossing your parents around may not be a socially acceptable form of learning the rules and boundaries of communication. It's lucky that we adore him. But by channelling his "Obsession" into something that teaches him and teaches us about him, everyone's a winner. He goes to bed, having flushed out all obsessive thoughts - he can switch off his brain and we can go downstairs and feel like we've been "with" him for those minutes. That, and we're immensely proud of him, of course!

.......................................

2010-02-17T19:17:00.003Z

Oh god - it's been ages since I posted anything again - my New Year's resolutions are mouldy and rotting already (along with my lungs again unfortunately - 3 long months minus the menthols tho - ho hum - let's call it a detox. Yes yes I know it's only February - but I gave up in November - the resolution was to stay resolute!!).

Since my last post, heads have been rolling (and eyes) and things have improved, or at least changed. It's all a work in progress and I will get back to you but we're reigning back a little control and sanity (this week is not included in that last comment - it's half term and J has it in for the cat and both boys are having Dairy/Casein withdrawal symptoms so it's like a scene from Trainspotting. Say no more...).

Eating chocolate with my head in the sand!

2009-12-10T10:57:00.006Z

It's been a while since I last wrote anything. I've even lost a follower - presumably due to being a "lazy blogger". I'm sure I've been called worse in my time but the simple fact is that I haven't felt like putting anything out into cyberspace of late. Not usually backwards in coming forwards and certainly not one for hiding my emotions or keeping secrets, I just haven't wanted to talk about it or open up any cans of worms.

Everyone knows that if you eat chocolate in a darkened room without anyone actually seeing it pass your lips that you don't put on any weight. Or, if you're anything like my granny, and you want to convince yourself that people are incapable of cruelty to animals, you simply don't switch on the animal-murdering documentaries. Similarly, if you just muddle through life without tending to those lurking worries, then all is well in the world. No? Well actually, NO!.

So here's the Thing, the dark 4am fear-thing that I don't want to be there and that I haven't wanted to admit is even there at all:

I am worried that J is getting more autistic.

My interactions with him are becoming harder and harder to achieve. The majority of the time, he is in his world and it takes a gargantuan effort to lure him out or to persuade him to let me in. He still has delightful, happy, cuddly, magical moments (see previous post) but they are getting fewer and further between. I seem to be losing him to the inexorable lure of self (the word 'autism' comes from the Greek word 'autos' which means self - only found that nugget recently..). I feel like I'm trying to catch up with a balloon in a gale - there are occasional lulls - and then he's off again - uncatchable. And I'm not even sure whether he wants to be caught up with. I'm sure that the Priory would have a lot to say about this but my maternal instincts are screaming out that if I can just make J understand the bottomless depths of my unconditional love for him, then I can buffer him from a world that doesn't make sense to him. Utter nonsense, of course. Autism is as autism does and a cuddle from me won't have any effect on J when I watch him thunder up and down the living room floor - as he does for a couple of hours every day, making odd whale-like squeals and banging heavily into walls and furniture to get some kind of sensory input to make him feel ok.

Is he really getting more autistic? Is that possible? Call me naive but I thought some things would get better with time, not worse...

He's nearly 5 now and so are his peers. Not long ago they were all throwing wobblers, stomping their feet and generally laughing in the face of social expectations and niceties. But they're all growing up and these"neuro-typical" fellas are a cloud of (fully functioning, play-dating, party-going) dust on the horizon and my little man is out there on his own with his autism becoming more obvious.

There's also the unavoidable fact that he's physically bigger - I can't carry him anymore when he won't walk. Previously, if a noise had frightened him or a passer-by had accidentally brushed against him and he had become a jelly of scrambled senses, I could scoop him up and carry him to safety. Not any more. He's too big for a pushchair as well so I'm having to come up with other strategies - patience and bribery are all I can think of so far.

We've also had some big changes over the past few months. We moved house in August. We've only moved a mile down the road but we've left the island in the Thames that J had known as home for his whole life and moved to a terraced house on terra firma - exchanging the quacking of ducks and honking of geese for the rumblings of trains and whooshing of traffic. We all love our new home - J particularly loves the stairs and his new bedroom but, however much planning, preparation and careful handling of the change we did for the boys, it's been a stressful time.

And then in September J started a new school - an autism-specific unit attached to a mainstream Catholic school. It's a work in progress while J is getting used to it and while they are getting to know J and his needs. It feels like quite a big step for him but he totally loves the joys of learning so I'm hoping it will all work out...

And then there's us - me and Dave. We've accepted that J has autism. The anger and desperation that we'd initially felt when J got his diagnosis has waned and we've just been getting on with living our lives with our cheeky, hairy, quirky, gorgeous boys. But that nagging fear Thing is whispering that I could be doing more to help J. There is the hint of a fine line between being all jolly and accepting and all defeated and apathetic. We can continue to let J get swept away by his Autism's quest for withdrawing totally or we can have a look at whether we can help him more. There's a whole world of "cures" and charlatans ready to pick the pockets of people like us out there, but there are also a lot of interventions that can really make a difference. I just don't know which is which just now. And I'm not sure where to start looking. But I'm going to say the thing that I've been trying not to say:

I'm losing J. And it's killing me to sit back and watch him disappearing.

There, I've said it. So I'm off to unearth my head and to eat some chocolate in public. Then I'll have a look at what we can do to make things better. I'll get back to you.......

Hooray for PhotoBooth!

2009-11-18T11:01:00.010Z

Some Kids Do 'Ave 'Em - Parents..

2009-09-14T09:52:00.002+01:00

It was a gorgeous autumnal morning - a slight nip in the air, sunny with a misty haze over the ground. The boys were playing happily on the assault course, the squirrels were lobbing ripe conkers at them and I was kicking a ball for the dog - the day had an air of idyllic slow-mo about it.

Imagine my surprise when, like a needle scraping over vinyl, a tight lipped and unamused woman decided to unleash some fury on me. "Can't you read?" she yelled "The sign says No Dogs - get that thing out of here" she continued, flashing an evil death stare at Claude, our "please please let me please you" Labrador. I politely informed her that dogs are allowed on the rec but not on the (unfenced) play area which we were well away from. As she marched off, I impolitely swore at her departing back when she was (just) out of earshot (that inner fishwife deep in my soul just won't be silenced when my sense of justice is challenged!)

After a few minutes of simmering and kicking the ball - quite viciously - for the dog, I realised that her son had not moved from his position at the top of the climbing frame for quite some time. On further inspection I realised that it was probably fair to suspect that he was autistic - that look behind the eyes and the frantic flapping etc. Feeling like a prize lemon, I approached Mrs Tight Lips to try to sort things out. I asked if her son was frightened of dogs - " He's autistic and he's terrified of dogs and we've had 12 years of selfish people like you bringing your filthy beasts into public places". Another death stare at Claude who was now frantically wagging out an apology. I apologised and said that I understood autistic fears and phobias, being a mother of an autistic child as well and that, if she'd told me that her child was afraid, I would have immediately put the dog on a lead. This had a similar effect of poking a cross crocodile with a blunt object "I see no reason to tell people he's autistic - your dog shouldn't be here and haven't you read all those stories about children being admitted to hospital with E Coli poisoning. Rant. Rant. Rant"

It was at this point that I realised that this had as much to do with Mrs T-L's fears as her fears for her (still at the top of the climbing frame) son. I realised that I was in the wrong place at the wrong time and there was no point in continuing our little chat! I left her shouting about ringing the council and banning all filthy disease-ridden dogs from the planet.

This was not a fun morning. The autumnal idyll was shattered and suddenly the fluffy squirrels appeared to be red eyed and foaming and the mouth! I spent the rest of the day with an uncomfortably bitter taste in my mouth. It made me think the following:

Arguing in public is so un-British. If we'd been in France, a crowd would have gathered, Gauloises would have been waved around emphatically and we all would have had a jolly good "putain" yelling, slanging match.
Just because people have kids with autism, it doesn't magically change them into saintly people. It's an ever-growing cross-section of society with people from all walks of life and with varying opinions. Mothers of kids with autism are not all going to become one big happy sorority. Tensions run high. There's more than a hint of competitiveness. There's a lot of sleep deprivation around. And a lot of anger.
I like dogs. I'm slack about hand-washing, nose-wiping and germ eradication with my kids. I religiously scoop the dog's poops though. Some people loathe dogs. Some people are better about germ-warfare. Some people have OCD.
This lady made me feel sad because she was modelling to her terrified son that he is damn right to be terrified of these evil four-legged germ mongerers. If he goes near one, he'll end up in hospital. That is an unhappy way to live your life.
Which brings to mind the immortal words of Philip Larkin: They F**k you up, your mum and dad, They may not mean to but they do. They fill you with all the faults they had, and add some extra just for you" No parent is perfect. Some kids are less "perfect" than others. These ones trigger insecurity and, sometimes despair in their parents. It seems that some kids are easier than others and those that aren't easy have a tendency to magnify and display our weaknesses and failures so publically.
The main thing that I took away from my meeting with this furious, probably exhausted and desperate woman is this: that Hell hath no fury like a mother protecting her autistic child. Rational or irrational - it makes no difference. These kids need a lioness to fight their corner. I just wish I hadn't been on the receiving end!

the little group - the hard goodbye

2009-07-15T19:30:00.012+01:00

I was never big on school. In the early years I was that kid who always wee'd in the wendy house. Later, it was just a case of counting the minutes until home-time before mastering the art of the duvet day and the recurring wrist injury that always flared up on P.E. and exam days. I wasn't an enthusiastic pupil and, not surprisingly, the highest position of responsibility I ever held was milk monitor at primary school. I always got satisfactorily middle-class grades but after twice dropping, bored-rigid, out of different universities, I finally decided that, although I would have made a great, wafty art student: enough was enough. Education just wasn't "me".

Of course, I certainly don't want transfer my sketchy educational attitude to my boys, but the stroppy rebel without a clue in me has always been lurking whenever I've crossed the threshold of any school and I'd always thought that I'd rather boil my head than be a member of a PTA.

It therefore came as quite a shock to the system to be driving J home from his last ever session at his nursery, "the little group", in uncontrollable tears, after saying goodbye to his amazing teachers.

This is a preschool in Epsom that caters for kids with complex communication difficulties and autistic spectrum disorders. I heard about it almost by chance but after the first conversation with the lovely, lovely deputy head, Nicky, my (sizeable) gut feeling was that no other place would do for J at this vital time of "early intervention". On meeting Nicky and Judy (the head), my mind was made up. The world of special needs is a funny old place and prior to meeting these 2 lovely people, I'd (wrongly) assumed that we'd always have to endure the slightly embarrassing but extremely well-meant renditions of "Hello J la la la" with a bucketful of sign language thrown in, sung loudly and faux-jollily into J's face.

the little group's mission is as follows:

"The little group aspires to leading the field in the provision of early intervention for children with autistic spectrum disorders and their families and to inspire the practice of others

We aim to provide -

An irresistible invitation to participate

High levels of consistency

A high autism knowledge base within the team

A calm and clear environment

Clearly communicated boundaries

Low numbers in each teaching group

Highly visual teaching methods

Highly predictable routines "

This all sounds promising but in practice, what they do with these kids is spectacular. All the above is delivered and then some. It starts with the people - no happy-clappy stuff, just totally respectful and enthusiastic and "normal". No silly voices and no falseness - just lovely, calm and fun people who really know their stuff about autism. These people enjoy working with kids with autism and they recognise the fact that a lot of us parents are struggling with finding our feet in this alien land and are often sleep deprived or up the creek without a paddle. They willingly (thank you, Kylie!) spend the time with each parent, although they've spent all day working miracles with our children, discussing and suggesting solutions for any concerns and conundrums.

For J and his classmates, even staying on their stools right up close to other kids and paying attention to what the teacher is saying, is a battle. But when faced with something as cool as a lemonade fountain/exploding glittery film canister/or various other very messy but totally fascinating activities, they soon learn that it's more interesting to take your hands out of your pants/nose/neighbour's face and check out what's going on. That safe little bubble that people with autism crave isn't so vital when you're being lured into a more interesting and colourful and sociable world so confidently and invitingly.

I could wax lyrical about all the brilliant things they do with the children but the punchline for me is that J went in there as a frightened little knot of anxiety with few communication skills and fewer social skills but has come out the other end as a little bloke with autism who is sometimes open to learning and accepting other people's agendas. He's learnt that trusting people other than just his closest family is ok and he seems ready for the next step. Of course he still needs people who understand him and he'll never be squashed into a mould. But they've put him on the right track for learning to be a person in the big wide world and not just in the soft, protected confines of family life. The large battle we fought with our LEA to fund his place out-of-borough and the 3 hour's a day of taxiing him to and fro have been worth every second.

I'm so sad to say goodbye but both me and J have learnt so much from them. I've also learnt that there are some super-special people out there who are rooting for kids like J. And that is a good lesson.

So, here's a huge double thank you to the team at the little group - not only have you done amazing work with J and our whole family, but you've also dispelled my rotten attitude to education once and for all - if there'd been a little group PTA, I would have been right there waving flags, ringing bells and baking fancies. Whoa - I never saw that one coming!

Navel Gazing....

2009-06-23T18:04:00.013+01:00

Having waited a year for my "Emergency Counselling" to materialise, I finally got a call in the Spring offering me 12 counselling sessions with best wishes from the NHS. It was something I'd been hanging on for with the tips of my fingers for some time. I fancied a weekly session of primal screaming with a lot of wailing and wringing of hands thrown in. It's been a long four years and I've had some wobbles along the way so it seemed like a softly spoken, emotional enema was just what the doctor ordered. The scene of the crime was to be none less than the Priory so I felt truly rock 'n' roll.

It really has been an emotional rollercoaster - from the utter despair of seeing J having his first seizure as a tiny baby and subsequently being told that he'd probably never walk or talk; to the secret, intense hope that he'd be one of the 5% of children who come out of Infantile Spasms completely unscathed; to the complete joy when the seventh hard-core drug we'd tried had stopped his seizures and he was able to roll, then crawl and then walk; to the start of the next chapter when, although we already knew it in our heart of hearts, J was diagnosed with Autism.

People often say to me that they don't know how I do it - it must be so hard to bring up a child with Autism. I never know what to say to this without sounding rude, but there really is no choice. He's my son and I adore him. I'm not the only mother of an autistic child (everyone seems to know someone that is affected). You just get on with it and take the rough with the smooth and hope to get through the days in one piece. I'm certainly no saint and I often wonder whether I was cut out for this job at all. I'm poorly qualified to keep up with the need for routines and sameness - a domestic goddess I am not - Autism aside, I was never going to win prizes for baking, hoovering or insisting upon the Teddington-norm of golf and drama lessons for my kids. I'm more Captain Chaos than Nigella but I do genuinely enjoy being with my boys and I love them fiercely so we muddle through somehow and keep our heads above water most of the time.

There is a grieving process that can be applied to any loss - of life or of expectations. With a child with special needs, the grief is for the loss of dreams you'd envisioned for your child, the loss of normality and the loss of being able to take anything for granted. Nobody can predict the future for their children and no amount of Playstation/TV and E number bans can prevent a kid from becoming a crack whore when they grow up if they're so inclined. But it's the little things like riding a bike, having friends and being able to tolerate being in a public toilet with a noisy hand dryer that would be a good start in terms of future goals for someone like J.

So back to this grieving process. It goes something like this:

1) Shock and Numbness. Tick and Tick - not a good feeling. Not a good look.

2) Yearning and Searching. Anger and Guilt. Again Tick, Tick, Tick and Tick. The why oh why's, the desperate googling, the blasted environmental assaults and the "why, oh why did I give him such a murky gene pool?" rants.

3) Disorientation and Disorganisation. Depression, more Guilt and Unfamiliarity. Ticks all round. The feeling of breaking into a whole new world we hitherto knew nothing about, the what nows?; and, oh good god, the disorganisation - if I had a pound for every item I'd displaced - the cheese in the cupboard, the crackers in the fridge, the shoes in the washing machine, and then the plastic bag that operates as the filing system for all paperwork; the terrible palpitating guilt and the feeling of knowing nothing about your child's inside but knowing every little hair and freckle on their outside.

4) Reorganisation and Resolution, Increased Energy levels, Increased decision-making abilities and Increased self-confidence. All good stuff - a couple of ticks on a good day here of late. J has been officially Autistic for a year and a half now and we're learning the ropes. That doesn't make it easier really. Just more predictably unpredictable. And I think we're discovering where we stand on all the miracle "cures", diets, schools and systems. Put it this way - I'm not going to forcefully shove 40 different supplements per day down J's throat without knowing exactly what they are and what is going to be achieved by doing that to him.

The good news is that time really is a great healer. It is possible to get from number 1 to number 4. The bad news is that Autism is for life and not just for Christmas so, us parents of kids with Autism and other special needs will continue to dip in and out of this cycle with every stage of our children's development and every time their peers celebrate reaching milestones that will take our kids a zillion times longer (if ever) to reach.

So what is the point of this Counselling lark? It won't cure anything. It won't stop me feeling this incredible whirlpool of emotions. But it is making it clear to me that I need to remember me. I need to remember that I'm only human and I will most certainly screw up from time to time but I need to put those boundaries up that prevent me from thinking of nothing more than the trials and tribulations of my boys. Apparently it's almost a given that most mums of autistic kids become totally co-dependent on their little ones if they're not given a Priory-sized boot up the arse to remember that they (and their families) are worthy people too. So I will try to make time for myself. I'll endeavour to stop being such a control freak all the time. And, by the power of Greyskull, I will not gaze at my navel in a depressive, guilty manner too often....!

But if I could put some words on my coffee cup, or perhaps tattoo them onto my forehead, they would be as follows:

Give me the grace to accept the things I can't change, the courage to change the things that I can and the wisdom to know the difference.

Rock 'n' Roll!

It's. Not. FAIRRRRR!!!!!!!!!! Siblings...

2009-04-04T20:23:00.005+01:00

It's never going to be easy when a new cuckoo of a sibling arrives in the family nest. Firstborn children are not known for their Mother Theresa-like qualities where new siblings are concerned - my own beloved sister had to be bribed daily with Smarties to keep her from lamping me one! And G could certainly have benefitted from the Milkman of Human Kindness leaving him an extra pint when J was born. Quite frankly the credits that were afforded by the shiny new Playmobil fire engine that was J's "new brother present" to G did not last long when faced with the often-crying, mother hogging babe that was J. We weren't overly worried at the time, given that most siblings have an unwritten set of rules that goes something along the lines of:

1) Fight like tigers

2) Make sure you shout "mum, he hit me" the fastest and the loudest

3) Never bite - it leaves too much in the way of incriminating evidence. Hair pulling is much more effective as long as you can detangle the hairs from your fingers before your parents get to the crime scene.

4) If you must bite your siblings, then go for a quick nip to the toes when everyone's asleep at night, then get back to bed pronto and do that fake sleep-breathing thing when your bleary-eyed mum arrives to console the screaming sibling.

5) Play dirty - watch your siblings scoff all their Easter eggs at one sitting and then carefully hoard at least half of yours for future bargaining/ taunting tactics - how can your lack of gluttony be punished?

6) If you happen to come off worse in a fight, make sure you remind the offending sibling at least once a year for 35 years or so that the scrubbing brush that hit you in the head is still giving you migraines (sorry Sonj - it slipped out of my hand - honest!!).

The problem here is that this sibling-specific variation of the Queensberry Rules goes out of the window when only one out of two brothers is able to understand and adhere to them. All the parenting manuals prescribe equality and consistency when raising your children but in our household there is one parental tolerance setting for G and another, way more lenient setting for J. "It's. Not. FAIRRRRR!" is frequently screamed at us by G.

And no, G, it's not fair. And every maternal molecule in my body is truly and terribly sorry about that.

J has just done a Banksy on the sitting room wall and I'm faux-calmly telling J that this is not acceptable, then luring him away from his crime with a rather tempting game of "spot the missing even number" over the other side of the room. G watches carefully and knows that if he'd decided to unleash his creative talents in a similar manner, he'd get the eye-popping wrath of a fire-breathing dragon and a week-long ban from the X-Box.

And no, G, it's not fair when we're stuck in a cold rainy playground and J is making like a limpet on the swing and no amount of countdowns, bribery, pulling and, ultimately, crossness will prise him off. G wants to go home to pixellate himself in front of the computer. The dog wants to go home to inhale his dinner. I want to go home and assume the foetal position on the kitchen floor. But J wants to swing. And then swing some more because it makes him feel nice. So we wait in the driving rain until J eventually capitulates.

It's not fair. Poor G - this can only make him feel powerless and ignored but it also highlights the gaping chink in my armour when I am sometimes (actually quite often) powerless and ignored too. And that unfairness and lack of control makes for an explosive cocktail of emotion in a 7 year old.

So how do I explain to G that if I get all "Supernanny" with J and put him on a naughty step when he draws on the walls, that he will repeat the offence over and over again, but if I quietly direct him to an acceptable pastime, the misdemeanour is less likely to recur? And how do I explain that sometimes J's Autism is just too big for me - his mum, his hero(?!) - to contend with? We've always been honest with G. We gently explained to him when J was having multiple seizures as a baby that his brother was poorly and that the many, many hospital appointments that were taking his mum and dad away from him so often, were helping to make J better. We thought that we'd explained J's diagnosis of Autism to G, but it turns out that we forgot to explain what this would mean to G. It took a call from G's headmistress to say that he had told her that his brother was "very ill and might die of Autism" to make us realise that our efforts had done as much good as a chocolate teapot in terms of helping G to understand what was happening in our family. So we took it down to basics with G and made a little book for him, telling him in age-appropriate terms, what J's Autism meant.

So G now understands his brother a bit better. Does this make him feel better when J reduces his just-completed, Foster-esque brick structure to Ground Zero. No it doesn't. Does this stop G screaming like a Banshee when J has yet again ignored the "Keep Out" notice on his bedroom door? Nope. Does this make up for J struggling unceremoniously out of G's occasional brotherly bear-hugs? Absolutely not. Having a brother with Autism is an absolute shitter at times. In G's words, "It stinks!"

But the amazing thing is that G is a kid. And he can't remember things being any different. It certainly helps that G has cousins whom he loves like brothers and who do run with the sibling rules (J and B - you have no idea how important you are to G - you're brilliant!). My point is that kids adapt to situations that would have us adults popping Valium and wearing our underwear as outerwear. Kids just get on with it. G has recently started communicating with J like a professonal Speech Therapist. He uses short sentences. He pauses for extra time to let J answer questions. He speaks slowly and clearly. He gets J to look at him first. And it works - they chat!!!!! Ok, so he's taught J to say "Mummy's a poohead" which I'm not ecstatic about and J adopts a mockney accent when he counts to "Twenny" these days but, call me rose-tinted - I think this is the start of a beautiful relationship. I'm not saying that my computer-obsessed, boundary-pushing firstborn is getting soft but it's a ray of hope that they might eventually have some kind of relationship. I've even heard G boasting to his mates that J can read and write better than them (grossly exaggerated, but rooted in truth!) and his head nearly span off in rage when I told him that some kids in the playground had been mean to J.

But the thing that makes me the happiest is when they are following to the letter the aforementioned Rule Number 1 - Fight like Tigers. There's proper, equal brotherly wrestling, accompanied by shrieks of enjoyment and giggles. Always ends in tears, but "Go boys! - that's what brothers do!"

So G, a little footnote to you: I will always keep you safe when J is upset and out of control. Me and Dad will do all that we can to help you to understand and accept that your brother is a little bit different to most. Your achievements are every bit as important to us as J's small victories. And G, I've said it many times, but I'd like to etch it into cyberspace to make you believe me - of course I love you every bit as much as J. He may take up more than a fair share of my time but my heart is equally divided - I think you're amazing!! xxx

Everything Starts With a P... Toilet Training

2009-02-12T22:13:00.007Z

I'd thought of calling this one "My Life is Sh*t" but it sounded too Britney Spears. I've shied away from writing this for a while because poo IS taboo and not particularly interesting to most, unless you're 7, like G, and think the word should be included in every other sentence for extreme hilarity. I've dwelled on the fact that, with exception to the under 3's, whether a person is continent or not, is an indicator of whether or not they are acceptable to the human race. It's really a low down and dirty fact of the world of "special needs". But it's been such a fundamental part of our lives for the last 7 months and, as I said before, it's a dirty job, but someone has to do it...

When you have a child with special needs, it's very easy to baby them for much much longer than you would a "normal" child. I'm speaking for myself here. The Autism label is the equivalent to a note from your mum for getting out of P.E. and cross-country runs when it comes to teaching any kind of skills that foster independence. I could (and often do) beat myself over the head with the "could be a better parent" guilt stick but, my reluctance to take the plunge with potty training J was all for a very good reason. It's bloody hard. Really hard. In retrospect, it's been like a kind of brown Marathon des Sables - but has, or is, taking several months longer!

For starters, the common incentive of being a "big boy" just doesn't cut it with J - he doesn't covet a skinny-cut jean with a peek-a-boo pant. He sees no shame in a man-sized nappy. Bribery is a minefield when the concept of cause/effect is shaky. And change is really frightening for him. Then there's the matter of the autistic bowel. I won't go into too much detail here because it feels unfair to J, but let's just say that when your own beautiful, beloved flesh and blood causes you to gag unashamedly, you start to revisit the Autism/Leaky Gut theories... You could build whole skyscrapers with this stuff.

So it was back in July when J started grabbing his crotch a la Michael Jackson and getting that far off "I'm shaking my lettuce" look in his eyes. We really wanted to help him achieve this giant step towards independence. I went on an amazingly clear and reassuring "Toilet Training for kids with Autism" masterclass (by Gina Davies - if you do have a child with autism check out her forthcoming website which will go live soon: www.attentionautism.com) and decided that the time was ripe.

The crux of the matter was planning and preparation and getting into a routine of "toilet timing" i.e. taking J to the loo at regular intervals until the penny dropped (so to speak). I bought an abundance of spare pants, socks, trousers and carpet cleaning materials. I positioned uncharacteristically organised baskets of "clear-up-without-any-fuss" materials around the house. We decided on the vocabulary that we should use (this had to be universally understandable words that J can use for the rest of his life - once words for things are learnt, they are very difficult to change at a later date.) "Wee", "poo" and "toilet" seemed acceptable (although, call me Audrey Fforbes-Hamilton... but "toilet" had been as far from my vernacular as "serviette" before July!) We laminated exacting visual schedules - "trousers down, pants down, sit on toilet, wee or poo in the water, pants up, trousers up, flush, wash hands" (extremely helpful to drunken adults too!) and blu tacked them into the bathroom.

So, in the optimistic spirit of building a piece of flat-pack Ikea furniture, we were off!

Day One involved a lot of distress and anxiety, frantic searching for well-hidden nappy stash and generally seemed doomed for failure initially. It took both me and the dog sporting pants on our heads to get J to so much as proffer a foot for this disturbing newfangled item of clothing. J wouldn't go anywhere near the "toilet" until I'd produced several sheets of suitably distracting maths artwork to adorn the walls. It was angst-ridden and awful.

The closest he came to hitting a target on that(first of many) angst-ridden, carpet-punishing day was a wee in the dog's water bowl. By close of play the washing machine was on its third cycle but I was just so immensely relieved to have taken the leap of faith that it didn't matter. As parents, we don't usually dwell on whether our kids will grow up to be independently functioning adults. As parents of kids like J, there are very few guarantees. We could easily inherit several autistic traits on the way: fear of change, being just one, because change is just so traumatic for J. And for us in relation to J.

Many months on, J is in pants. The accidents have become part of life but the we're almost there on the Number Ones. Number Twos, however, are a law unto themselves. Kind of like traffic wardens - they appear when they're least expected and when we're least prepared! There have probably only been 20 poops in the last 7 months that have found their way into the Thames Water system. That's a lot of dirty pants. As with some people with autism, J just doesn't seem to have that butt-clenching, "touching the cloth" (sorry!) sensation pre-poo. It's more like a sudden "filling the cloth" type surprise all round. Some autistic people have to set their watches to alert them to visit the toilet every half hour for the rest of their waking lives to deal with this lack of sensation.

The plus sides:

The bathroom has never been so clean (it is disinfected at least once a day due to necessity rather than any OCD on my part)
We have discovered that Labradors make excellent hoovers - they are really not fussy: cat-shit/fox-shit/kid-shit - all looks like chocolate buttons to them!!
We are helping to keep M&S afloat in these tricky financial times with our bulk-purchasing of pants.
We're losing that nagging feeling of being in charge of a de-pinned grenade. Small steps but it looks achievable.
Yet again, I am humbled by the gargantuan effort J has to put into life. This isn't coming naturally to him. He isn't interested in conforming. But he's got the idea and he's really trying. I do believe he's just a little bit proud of himself. And that's worth every effort.

G Mail

2009-01-29T21:05:00.003Z

A lovely thing happened to me today....

It began as one of those grey days with nothing being quite right in J-World. He wanted to remain firmly under his rock and was not in the mood for any intrusions into his stratosphere. All my carefully-closed questions remained unanswered, requests were ignored and the bribery card had to be dusted off and used to the max. Even the Frubes came out to help coax him to our appointment at the dentist..... Eventually..... How the dentist managed to ascertain that his gnashers were in perfect working order in the 2 seconds that he actually opened his mouth for is a mystery to me. I think it was a combination of cosmic dentistry and the desire to retain a full complement of fingers that meant that we were in and out of the chair in record time.

We took the long route home to check out the bus route letters on every single bus stop and when we got home, my mute little man somehow managed to aim his tackle at my eye during "Toilet Time" and hit his target. I took the hint (here's one in the eye and all that) and left him to his own number-orientated devices.

So it was with heavy heart that I started opening the backlog of post that had piled up over the past week.

Amongst the bank statements and (destined to be binned without opening) catalogues, I found a hand-written letter addressed to Kristina and G. It was a response to my article "Bring me a higher power - Dear Gloria" from December and was signed "from Big G - Gloria's Dad". It was truly the loveliest letter I have ever received in my life and I am eternally grateful to "Big G" for the beautiful and generous words which reduced me to a teary dollop for the rest of the day. To give you a small excerpt: " You have been given one of the most extraordinary things a family can ever have, which is a human being who - through some very unusual ways - makes anyone close to him come so close up to what LOVE is all about, it can't help but shake things up a bit..." "...And remember, the thing about LOVE is that it takes the most brave people possible to do it properly.." It was sincere, wise and lovely.

"Big G" - I'm pretty sure you're not the eponymous surf-forecaster and I'm hazarding a guess that, in your mortal incarnation, you've been known to throw some nifty moves at the mecca that is "Disco Marisco"- you have really made my day and touched my heart. You should have seen G's face when I read it with him. Thank you so much. xxxxx

The A to Z of J

2009-01-14T11:29:00.000Z

I think that most people in this day and age have some understanding of what Autism is. Rain Man played a part, albeit in portraying an autistic savant. The MMR debate has raised awareness even if it has put the fear of god into new parents across the land when they are cornered into feeling like they have no choice but to toss their bright-eyed toddlers into the Mother of all lottery machines and hope that they are not the chosen ones who go over to the Dark Side.

I knew a little bit about Autism in the same way that I know a little bit about the political situation in Gaza. But I now guiltily admit that the fact that Autism is something that no one wants their kids to have was knowledge enough for me in those long-ago, pre-labelled days.

Now, I'm not really a "joiner" type. I don't mean that in the biblical DIY sense of the word but in the being rubbish at belonging to groups or clubs sense. I'm a wafter-around-the-edges type of person. So imagine my dismay when we suddenly and reluctantly became fully fledged life-time members of the "Autism Club". The point is that my little smorgasbord of Autism facts was just not enough - what did it actually mean?

A year and a half into this membership package you would expect that, if I'm ever asked to explain what Autism is, I'd have a snappy and concise response on the tip of my tongue that would give instant enlightenment. The Oxford Dictionary gives it a stab: "A mental condition characterized by great difficulty in communicating with others and in using abstract concepts". Quite frankly I think that this is a crap effort - it's over-generalised and incorrect for many. But that's exactly it - the Autistic Spectrum is so broad and each person on the spectrum is so different that it's impossible to put into a few words.

I'm most definitely not an Autism expert but I am an expert on my own child - for now, that is, as each time I get the measure of J, another bit of development comes in and I'm scaling yet another steep learning curve.

Therefore, in honour of a little chap who loves a list, and particularly a list with a clear beginning and end, here is my A to Z of J (for now!)

A Anxiety Anxiety and then some more Anxiety for the parents! Life just doesn't seem to make sense to J and this makes him really anxious. New people make him anxious. New situations make him anxious. Furniture being out of place makes him anxious. Strange noises make him anxious. I could go on and on. It hurts to see your child being so anxious.

B Brilliant Brain. J is on the high functioning end of the spectrum. He has an amazing memory for numbers and can do all of his times tables, forwards and backwards. But he can't use a spoon. He can remember the car registration number. I can't! He sees things in patterns. It's quite humbling at times.

C Communication. This is an area where he's making huge progress now. A year ago we lived in a world of frustration. Now he can get his needs met. There's no general chit chat with him but his brother certainly makes up for that!

D Danger Boy! J lives by the seat of his pants. Actually the seats of his pants don't last too long because he falls over so often. He really has no sense of danger - when you're inhabiting a world that doesn't really make sense, it's not instantly obvious that if you run into the path of a car you're probably going to get hurt.

E Eye Contact. I used to think that kids with Autism didn't give any eye contact. Some don't but if J wants something or is expecting you to say a particular thing, he can give eye contact akin to Superman's laser eye thingy. Good god that boy can give eye contact! I suppose it all comes down to appropriate eye contact..

F Friends. He doesn't have any and wouldn't know what to do with a friend if he had one. OOOOH that feels horrible to write down. Ouch Ouch Ouch. Kids of his age seem to have an "odd kid" antenna and act accordingly. He's rarely invited to parties and has never had a play date. He doesn't care. I do.

G Glasgow Kisses. For anyone who doesn't know what these are, please see the bridge of my nose. They are well aimed head-butts. Since the increase in communication and the subsequent decrease in frustration levels, they are becoming rarer. This is good. They make me potty-mouthed.

H Happy. When J is happy, he is delighted. There's no grey area. He's a lot happier these days and a joy to be around on the whole.

I Inflexible. If it's not on the visual schedule, it's not happening. J likes to know what's coming next and if something doesn't happen in the way it should he gets anxious and this can lead to an explosion of Vesuvian proportions. An unscheduled visitor will probably be told "Bye bye" and an attempt will be made at pushing them out of the door. Luckily he's cute enough for this to be funny.

J Jumping and running and hopping and rolling. J is always moving about. He is under- sensitive to movement and therefore needs to move a lot. Our neighbours hate us. Running is noisy in our house. Buying a trampoline is the best thing we've ever done (it does take up the entire garden, but, hey, it's a nice shady place for the dog to poo!)

K Kisses. J is a kissy boy. He loves a good smackeroo but hasn't yet worked out that you don't kiss the meter reading man when you say goodbye! He also loves the tightest of cuddles. Anything less than bone-crushing is not appreciated.

L Literal. Put it this way, don't ever say to a kid with autism "get a wriggle on" or, worse, "look at the dog sticking his lipstick out" !

M Music. J loves music. I like to think it's my heavenly crooning that has inspired this love. He has a large collection of CD's covering most of the genres. He likes a banging intro and a catchy chorus best of all. Did I mention that our neighbours hate us?!

N Numbers. Safe, predictable, organisable numbers. What could be better?

O Own Agenda. This is probably the backbone of J's autism. It is very strong. It is the reason why I'm turning into a silver fox. If J wants to spend an hour walking up and down someone's front steps it's very hard to bring this game to an end without tears.

P Personal Hygiene. As far as J is concerned, what is the point? Tooth brushing is for wusses. Dentists are there for biting. Hair dressers have already been mentioned in a previous article. As for nail cutting - forget it!

Q Queuing or any form of waiting, for that matter, doesn't come naturally. J would do well with a continental queuing system! He has a great way of getting out of boring queues that we have named "the skunk trick" - he just poos in his pants. Works wonders. I thoroughly recommend it next time you're at the Passport Office.

R Repetition. Known in the trade as "echolalia". This is the exact repetition of other people's sentences to entire episodes of Peppa Pig. I love J's echolalia - it's so great to hear him chattering. Although hearing "where the f**k are my keys" with my exact intonation in a quiet library isn't quite so desirable.

S Sensory Scrambling. A big issue. Have already mentioned that J is under-sensitive to movement. J's hearing and our dog's hearing are similar. It's taken ages to get J to turn around when you call his name, but rustle a crisp packet 2 miles away and he'll be there like a shot. Car alarms, radio interference and even water running through pipes in well- insulated walls can cause extreme primal fear reactions.

T Toilet Training. This is such a special subject for me that I am going to devote an entire article to it so watch this space. It's a dirty job, but someone has to do it....!

U Understanding. J needs a lot of this. The more time and understanding you put in, the more you get out. On a bad day, I think that people generally are not very understanding. Particularly when autism doesn't have any obvious physical features.

V Visual. Another whole article in the making.. J is a really visual person. If I tell him what is going to happen, it won't always make sense to him. If I draw a crappy stick-man-type visual schedule of exactly what is going to happen from the minute we leave home to the minute we get back, he is happy. He notices tiny details. He sees things differently and shows us the world in a whole new light - next time you go to the London Aquarium, try lying down on the floor next to the shark tank and looking up to the top of the water. Really - try it!

W Willy-obsessed!! They do say that Autism is extreme maleness after all. A true boy!

X xu - a monetary unit of Vietnam, equal to one-hundredth of a dong. Who knew!!! Ok, ok, I got stuck on X but an interesting fact I feel!

Y Yes. Not a favourite word. "No" is far more popular in J's book. In fact, I would say that it is the word he uses the most. Questions are far better if presented in a marketing style. e.g. Q "Do you need the toilet" A "NO!" or Q "Do you want to go to the toilet upstairs or the toilet downstairs" A "Downstairs" Result! One less pair of pants to wash!

Z Zest for Life. J can do enthusiasm with bells on. If it's something he enjoys like going swimming or riding the escalators in John Lewis for an hour's entertainment then J's your man!

So that's it for now. It's not succinct. It's not catchy. It's not even complete - J is so much more than the sum of these parts. It's an ever-changing list. I wonder what kind of a list it will be when he's a teenager......

Bring Me a Higher Power - Dear Gloria

2008-12-15T21:06:00.000Z

I was recently chatting to a friend about an acquaintance of hers who has just done some time in the big white castle of counselling. Well, we were talking about the AA's Twelve Steps, as you do in the more fragrant areas of Greater London and she asked if I believe in a Higher Power. And I've been pondering the matter ever since.

I'd like a Higher Power in the same way I'd like to be bumped up the waiting list for "emergency counselling" that I've been on since March! I'm too disorganised for any structured religion and shudder at the thought of making J sit through a church service. J did have a brief dalliance with Hari Krishna-ism at a local fair, when he was magnetically drawn to their marquee and had such a great time dancing and spinning with them that he had to be forcibly removed after an hour.

I suppose the closest I've got in recent years to an HP is when J was having lots of seizures every day and was so pumped up on steroids that he looked as if he would just float away. I'd make paper boats every day with little pleading "please make my baby better" messages in them and send them down the river. It felt pretty useless but it felt ceremonial and that was nice at the time.

I'd like to hand it all over to some holy big cheese type on a bad day and just ride the tidal wave of chaos that sometimes strikes our family.

And then I remembered that we already have our very own HP. She's called Gloria and she sits on the highest of our bookshelves. She's a ceramic angel with large hips and pert appendages and a slightly holier-than-thou expression (quite a lot like some of the PTA mums at G's school when I think about it! ha ha). Well, me and G have an annual Christmas Gloria ceremony where we both write little messages to Gloria about our requirements for the coming year and then we post them into a small opening in a rather un-angelic part of her and make a wish. Last years messages went like this:

G: Dear Gloria, please can you make sure I get loads and loads of presents. I love you. Love G

K: Dear Gloria, please, please let J's diagnosis be wrong. I don't want him to be autistic. Love K

And this year:

G: Dear Gloria, please can you help make my life a bit happier. I cry a lot. Please stop Billy from bullying me. Love G

K: Dear Gloria, please turn my wine to water (maybe with a slight essence of Pinot Grigio); please help me swap my Marlboro Light habit to something involving lycra and sweat; please give me patience on the days when I have to make play doh numbers all day to entertain J; please help me find some uninterrupted time for G (but give me the in-built knowledge of the ins and outs of Lego Indiana Jones so he doesn't have to explain it all to me all the time); please take away my eyebags (anusol just isn't working any more); please give me the sense of humour (but not the hair or physiques) of Bill Bailey and Justin Lee Collins to see the funny side of J tipping yoghurt all over the kitchen floor and then lying down and making angel shapes in it. But above all, please make my family happy, healthy and together. Love K

I think we all need a Gloria in our lives..... and then there are only the other eleven steps to deal with!

Happy Christmas!

A Life in the Day...

2008-12-10T11:22:00.000Z

I am woken at 6am by howling puppy. This can only mean one thing. He's pooped in his bed. Great. Yep - there it is - one mortified dog and one poo-smattered bed. Nice. Half an hour later puppy is cleansed and smelling roguishly of girly shampoo and kitchen is disinfected. Fed said puppy and answered rousing chorus of "Doe a Deer" coming from J's bedroom. G has got himself up and glued his nose to the TV screen throughout the proceedings. Husband appears and grumbles about the shortage of milk, before using the last trickle on his own Rice Crispies and rushing off to work - late again. J takes the "let's clean your nappy" comment literally and pops wet nappy into washing machine. It's not until mid-cycle that I notice a merry little avalanche of nappy gel tumbling around the drum. You'd never believe how much those Pampers can absorb. Hoovered it all up including sock which causes the hoover to emit odd asthmatic mooing sounds.

Noticed small grains of rice in puppy poo in the garden. Mental check concludes that we have not fed him anything rice-like and they most definitely aren't green plastic like the watering can he ate yesterday. A quick perusal of the internet reveals diagnosis of tapeworm. Only wormed him 2 weeks ago but ring vet to order heavy duty stuff.

We then spend a lively hour between 9 and 10 am getting dressed. There's much chasing, cajoling and then shedding of clothing from J and a refusal to switch off Miniclip from G. But we finally make it out of the house - more or less clothed. Jude steps in goose shit and screams dramatically until his beloved (too small) croc is washed and dried to his satisfaction. (Prizes for anyone that can spot a theme to my morning!). Then there's more battling into the car because a friendly neighbour has parked one foot away from J's door and he refuses to enter any other way. Finally we're off. We're on our way to the barbers to get J's hair cut - ha ha isn't life fun!

Explain to the lady at the barbers that J doesn't need to wear the (too scratchy) cape thing and doesn't like the (scary) clippers or (too wet) water sprays and present J with his favourite book - a London A to Z - to occupy him. I turn my back for a nanosecond to talk to G and woman immediately sprays J with a fine mist of water and revs up the clippers. J screams and wails like he is being attacked but it's too late to stop as he now has a tram line in his overgrown barnet - like a reverse mohican. The shop owner hurries over and announces that we are causing a disturbance and must leave but the clipper wielding woman ignores her and continues her hair farming mission. Gripping the snot-covered, shrieking J in her ample satsuma-hued cleavage she makes swift work of turning J into a small Germanic-looking child. We pay, apologise and leave with J's new rats tails bobbing behind us in the wind.

We make it back home and then allow J to spin in the carpark for 15 minutes to realign his tattered senses while G and I discuss the advantages of the Xbox 360 over the Nintendo DS.

And then it was midday!

What's it all about...?

2008-12-01T22:13:00.000Z

I have 2 sons. G is 7 - a unique, cheeky little man who makes me laugh more than anyone else I've ever met and whose biggest ambitions in life are to a) get his first wobbly tooth and b) become a very rich video game designer who goes sky-diving at weekends. J is nearly 4 and, after a long fight with a particularly nasty type of epilepsy (called Infantile Spasms) as a baby, was diagnosed with High Functioning Autism a year ago. J's ambitions in life (if he could communicate them to me) would probably be along the lines of a) to be allowed to eat nothing but Frubes, b) to never be told that he has to stop doing whatever it is he is enjoying doing, however long he has been doing it for, and c) to permanently remain as naked as the day he was born.

As with all families, life in our family is peppered with ups and downs and curious incidents. But the fluctuations that arise from having Autism in the fold go from the sublime to the downright ridiculous and the incidents just seem to get curiouser and curiouser as we go on.

I wanted to write some of this down, firstly because I like writing and it feels cathartic, and, secondly because I couldn't find anything to read that is about Autism in layman's terms. No science bits, no promised "cures". Just the day-to-day experience of what it means to a family when one of your most precious people in the world is autistic.

2008-11-26T20:21:00.001Z