International Cuddle Day - October 7th 2012

Today J declared that it is International Cuddle Day. So International Cuddle Day 2012 it is! That boy can give and receive the tightest, snuggliest, squeeziest, most delicious cuddles on earth. Never let it be said that ALL children with autism are cut off and remote. They are all different and amazing in their own unique ways.

This is a photo of J today, smiling up at me as he gave me yet another cuddle. I love this picture. It captures a piece of my heart. As I took it, J said, "I love you, Mum". 

Happy International Cuddle Day!

A Few Things It's Best Not to Say to Parents of Children With Autism

Nobody's perfect. Especially me. We all say things that can be misinterpreted by others at times - stuff that we don't really mean or haven't fully thought through. Things that are well-meant but that can inadvertently make the recipient feel awful. Some people have a need to fill in the gaps - say fluffy stuff to keep the conversation going - or to try to "fix" the other person and make them feel better. A very titchy minority of people are just plain nasty. We're all guilty, now and again, of listening to others with our own agendas playing at full blast over what they're saying. Some people just think that the less said, the better!

Social interactions are full of nuances and expressions and body language. X says "blah" and Y responds with "blah diddy blah" but if the correct intonation or body language isn't employed than we can all get into a terrible pickle.

I'm sure that most things that people have said to me or any other parent on the subject of  our children with autism have been pretty well-meant. On the whole, people want to understand, to listen and to share in our highs or empathise with our lows. But there are some things that people say that, however they are meant, just get me where it hurts. I knew very little about autism before I met my children. Generally people are slightly better informed these days but, unless you live with someone with autism, there are just some things that should fall into the "Approach with Caution" category. I would, however, hate to think that people are walking on eggshells when talking to me about my boys so I've made a little list of the things that are better not to mention when talking to a parent of a child with autism. And I've thrown in a couple of do's too because nobody likes a whinger!

You look tired
Not particularly helpful but thanks for noticing. Yes I am tired. I'm knackered. And so would you be if your child was awake half the night and then you were constantly on red alert, never able, for safety reasons, to just leave your child to his own devices.

There are so many children with diagnoses these days - I don't understand why so many people want a label.
You think I got my children labelled for the good of my health? Hmm. Well actually I wanted to get my kids the help they need from as early on as possible to give the chances they deserve.

He looks fine - if you hadn't told me he has autism I'd never have known
Autism is an invisible disability. It's all the bits that you can't see like the extreme anxiety that give it away. But did you not think the flapping and screeching was a little suspect?

Did you give him the MMR - we gave our kids separates
Well done. No I did not give him the MMR.

You are amazing - I couldn't do what you do.
Thanks. But I am not. I am doing what any parent would do which is my best. Of course you could do that if you had to.

He'll get better as he gets older.
Sigh. No. Autism isn't an illness. It won't just go away. Some things will get easier for him. Some things will get harder.

He'll sleep when he's tired/ He'll eat when he's hungry
Both statements are false when talking about autism.  Some people, particularly people who've had their own children, like to put their experience of what their children did onto all children.

Oh yes my child does that too
Yes I'm sure he does but does your child do this this this this this this this and this too?

They're all brilliant at maths
He has splinter skills - some way above the average and some way below. While J does not have any academic delays, autism is still referred to as a Learning Disability. It's all well and good being able to do your 143 times tables but if you can't tolerate sitting in a roomful of people.... Not all children with autism have superpowers.

Have you tried ear defenders/lavender oil/etc
Sigh. Did you really think I hadn't thought of that when J throws himself to the ground screaming every time he hears a siren. And, believe me, I've tried nearly every sleep aid known to man - I would sacrifice lactating porcupines in his bedroom if I thought it would help him.

Wow, I wish.... could read as well as J can
Thanks. I wish J could live comfortably in the world and have friends.

You needn't have worried - he's fine at this party/dinner/gathering
That'll be those hours of preparation and visuals and the fact that Dave and I are tag teaming him constantly while we're here and unable to give anyone else - including our other son - our attention. And then when we're safely back home, the fall-out from all that stress will commence in full.

What's his name?
He's standing right here - ask him!

Our friends did a Gluten and Casein-free diet/Sonrise/Tantric Cat Bouncing/ whatever  - and their child is totally cured.
I'm happy for them but I don't believe autism is cureable. I have tried the diets but my walls looked like the Turner Prize after a week of gobbing and puking. And that toad-therapy course in Kazakhstan is a tad too expensive.

That child needs a good smack.
I hope that you are reborn as a dung beetle.

My son shouldn't be here - it's like a lunatic asylum
Oh. Did you actually mean that my son and all these other children in this ASD specific nursery that your son is attending are lunatics....! (a mother really did actually say that to me!)

We didn't invite G/J to .....'s party (which happened 2 weeks ago and you've already heard about from everyone else) because we knew he wouldn't want to come.
Ouch. I'm sorry that we are party poopers but please invite them if you're inviting the whole class anyway and then let them say no.

And my least favourite:

Autism? Never heard of it.
Do you actually live in the silt at the bottom of a pond?

And now for the Do's. It's not all negative. There are plenty of things that are ok to say to a parent like me. So here are a couple of examples:

Do you want a glass of wine?
Yes

Do you want another glass of wine?
Yes

Another?
Yup

What is this Aspergers thing?

AssBurgers, you say? Assperjers? Hmmm... But what is it exactly? It's something to do with Autism, right? Is it to do with bad parenting? Or perhaps over-parenting? He'll grow out of it, right? He just seems so "normal". Yes, my child does that too - I know exactly what you mean - it's just a boy thing isn't it? But he's so lovely. Soft mothering? Call it what you like, it's just downright rudeness as far as I can see - horrible! I read that Julian Assange has that. But he makes great eye contact. They're all so intelligent, aren't they. Could it be because he doesn't eat enough fruit and veg? Fish oils? Well, if he didn't spend so much time on his computer, he'd be fine. He's fine - I just can't see what you're on about! I read that you can cure it. He must love Lego. Yes, well, poor chap doesn't get much attention - his brother is autistic. How long has he had that for? No it looks like ADHD to me.. or OCD or ODD or BS or WTF.....

Sigh.

Tut.

Picks off nailvarnish for ten minutes.

Let's Wiki it....

Asperger syndrome (AS), also known as Asperger's syndrome or Asperger disorder, is an autism spectrum disorder (ASD) that is characterized by significant difficulties in social interaction, alongside restricted and repetitive patterns of behavior and interests. It differs from other autism spectrum disorders by its relative preservation of linguistic and cognitive development. Although not required for diagnosis, physical clumsiness and atypical use of language are frequently reported.^[1][2]

Meh.

Double Sigh.

I find it really hard to explain what G's Aspergers Syndrome is without either stumbling across a minefield of negative stereotypes, or seeing a slight glazing of disbelief in people's eyes. It's fairly easy to explain the science bit of AS a la Wikipedia above, but it really is tricky to put into a nutshell what that means in every day, real life terms. This is, after all, the ultimate invisible disability. It's not quite as socially acceptable (ha! that needs more explanation but let's run with that for now..) as Autism these days and nowhere near as allowance-making as some more obvious forms of disability.   When Joe Public is faced with someone who looks "normal" but is acting "differently", particularly if that "differently" is a dose of misplaced honesty or a social blunder that seems like rudeness, Joe Public takes it very personally and acts accordingly.

It took years to get a formal diagnosis because looking separately at G's traits under a microscope is no good. For G it's more holistic than that. There's no single behaviour in G that would tell you outright that he has AS. His individual behaviours, traits and responses to life aren't far off those of "neurotypical" kids. Not average but not wandering too far away from the top end of "normal". For every slightly different trait, a (helpful) mother has told me reassuringly that "oh my ---- does that too".Yes, BUT does their ---- also do this, this, this, this, this and this as well...oh and does ---- bite his own arm until it bleeds in assembly and eat plastic bottle tops? Above all, do these behaviours cause ---- an impairment? It's only when you look at the whole picture and spend some time with G in all manner of every day situations - particularly those that aren't of his choosing - that you notice that all is not totally "neurotypical". This would be fine and dandy if my boy was happy. Actually a lot of the time when he isn't engaged in his Special Interest or at least talking about it, he isn't overly comfortable.

So let me tell you about G: he's funny - off-the-wall hilarious; he gets on brilliantly with adults; he's affectionate, energetic, and has an astounding knowledge of all things Nerd and Geek. Adrenaline - seeking. Sweet-toothed and he has the amazing super-power of being able to tell who has been in the house, hours after the event, with his sense of smell! He's honest to a fault - he tries to lie now and again but the truth ALWAYS comes bursting out of him eventually. And he seriously doesn't get the concept of "white lies"! If I'm getting dressed up to go out, I can rely on him to pass or fail one of my outfits in one short brutal sentence. And he's always right!

And some of the trickier bits:

Impulsivity is a constant battle which he wins most of the time at school due to a terror of being told off by teachers. But he comes home utterly exhausted by his efforts. At home it's a different story altogether and he does and has always found it almost impossible to do whatever it is that he's being told NOT to do. This is a classic "yes, all kids do that" scenario. Everybody knows what it feels like to find it hard to resist impulses but, for G and his fellow Aspies, it seems to be almost physically painful to ignore these urges. If you tell G not to do something, he's pretty much guaranteed to do it regardless of the consequence. We now have "Swear Time with Mum" every once in a while. This entails me and G, on our own in the car and I tell him we can have 5 minutes of "swear time" to get it all off his chest (no PC mothering prizes for me then!). Invariably, G's swear repertoire has dried up after 2 minutes and that is enough to scratch that particular itch for the next few weeks! 

From what I've seen in both my boys, control is a theme that straddles the whole autistic spectrum. G's need for control of his world is as strong as J's. It manifests in a slightly different way but is the same animal at the end of the day. One of my favourite stories about the distinction between Aspergers and Autism comes from a mum who took her kids to an Autism Screening at the cinema. She said that all the kids with autism were flapping and stimming; all the kids with Aspergers were screaming at them to shut up and sit down and all the Neurotypical kids were watching the proceedings in amazement! The anxiety that G experiences in every day life is pretty staggering when you look at it as a whole. I recently saw the amazing Dean Beadle talking about his life with Aspergers. He describes the "egg-whisk" effect of stress. This is when worries get so whipped up out of proportion that meltdown is pretty much the only way out. I also like the Tank of Tolerance metaphor when little tiny stresses all add up and add up until the stress overflows in a volcanic manner. G is no stranger to a full, flailing, screaming meltdown when things get too much. It really is a total loss of control. The only real restorative for G when it's all gone Pete Tong is complete solitude.

And then there's the Special Interest. This is no little hobby that can be picked up and put down at will. This is the air that someone like G breathes. This is an obsession. For G this is the history of video games. Name pretty much any game ever made and G can tell you who the developer was and the original year of release. If he was left to his own devices, G would choose to be on his PC for about 18 hours of the day: playing games, researching, watching other people play games. We have timetables and boundaries and very strong rules (no games over a 12 rating) There's so much more to say on this subject - another time, I think. But let me just say that if a child obsessively reads books or plays tennis with the same level of intensity, people will judge those parents very very differently to parents of someone who is gaming-obsessed....!

Another big part of G's make up is his difficulty with Social Interaction. I mentioned that he gets on great with adults. With his own peers it's a different story altogether. His friendships are sudden and intense - best friends forever. G likes to be the one in control in a friendship. It's his way or the highway. Sadly, not many friendships last for long. Kids get bored with the level of G's gaming-obsession and want to play football. G's biggest hatred is football. Sigh. Then there's the mind-blindness; the misreading of situations and body language; the devastation when he thinks that someone else thinks that he's wrong/rubbish; the fear of being attacked by strangers and on and on.

This little list only really skims the surface. There are billions of other bits and pieces - some brilliant strengths and some gratingly unfair difficulties. It's quite complicated living with G at times. It's pretty much black or white with him - there are no grey areas. When he's happy he's delighted but when he's sad he's devastated. He can flick the switch between the two emotions in an eyeblink and then carry on as if the storm never happened.

So this Aspergers of G's.....I hope that has given you even a tiny bit more understanding. Understanding is good. I genuinely wouldn't change him for the world. I love his honesty. I admire (and envy!) his ability to retain information. I adore his affectionate nature. And nobody on this planet has made me get the proper giggles as many times as G has. I blooming love that kid.

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.