Things that 2011 has taught me....

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

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

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

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!

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

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?

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

"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.....

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

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......

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?)

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

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?!