Ten Reasons Why Having Autism In The Family Is A Good Thing

Often, nearly always, in fact, when I mention autism, people do that head cocked to the side, “aahhh, shame” sad-face thing. The media has been helpful. People now know a little bit about autism. But the media likes a bit of a car crash and tends to put a totally negative spin on ASD. True: autism can be a bitch - there are a lot of bad bits BUT there's also a truck-load of really great bits and these hardly ever get mentioned. It isn't a death-sentence for a family. It doesn't mean that life will be filled with doom and gloom forever and ever. Yes - it's a massive challenge for any family getting to grips with the new diagnosis and the implications for the future. BUT the dust has well and truly settled for us now and there's a lot of super cool stuff about autism which I wouldn't change for the world.

Here are my top ten reasons (and there are plenty more than just these) why having autism in the family is a VERY good thing:

1)            My boys have taught me to look beyond the surface of things. To look at life from a different perspective. To see (and feel and smell and touch and lick) the wood from the trees. We took J to the London Aquarium and he lay down beside every tank and looked at the ripples on the surface from underneath – so beautiful and so easily missed when you’re looking at what you’re “supposed” to be looking at. Bus handle colours, lamp post numbers, road sign fonts,  tiny errors in books etc etc etc. Rich beautiful details.

2)            They have taught me that the social conventions that J can find so confusing and difficult, often just don’t matter. Life goes on without following the crowd. Without adhering to these, you can make yourself appear odd to Joe Public. But what is more important – worrying about what strangers/acquaintances think or nurturing and enjoying your family?  

3)            Sense of humour – seriously, autism buffs this right up!  Not always conventional or PC, but life is properly funny round here a lot of the time! There are some days where a GSOH is vital…this “mountain”, for example, carefully sculpted from J's mattress (the third this year).

4)          My kids have taught me that you sometimes have to give people a little more time to get into their groove. Sometimes you need to look deeper than your initial gut feeling about a person. People who are initially “spiky” and hard to get to know are often the ones that are really worth getting to know. 

5)            They've taught me to poo poo the “shoulds” and “musts” in life, i.e. “all children should go to after school clubs” or “all children must love parties”. Our kids have always kicked against both of the above examples – I had to stop and really ask myself why I was flogging this or that particular dead horse.... Can they live without learning to play tennis?: yes. Why do I want them to play tennis?: so that I look like a “good” parent... oh!  Ditto the party-attending. If you actually stop and ask why you're doing the things that make you really stressed, there are often some interesting answers.

6)            Happiness. I can honestly say that I am a very happy person these days. Autism is painful and unfair and shitty sometimes and that means that we have to look harder for those golden nuggets of joy before the shutters come down again. But it's always worth the wait and is all the more special for not taking it for granted.

7)            They’ve taught me that there’s always interesting new stuff to learn like the effect of stomach acid on a wedding ring that has been swallowed or that Sonic The Hedgehog is also the name of a gene on chromosome 7 of the human genome or some other video-gaming fascinating fact (thanks G!)

8)            They’ve taught me not to always focus on the negatives in life – the Super Nanny model of parenting and most Autism “programmes” are about “fixing” your kids and “teaching” them stuff. Seriously? kids are kids – they want to have fun sometimes. 

9)            We will never EVER get lost on the roads of the UK. J has an encyclopedic knowledge of the road systems, rail systems and tube maps. #useful

10)         Finally, they’ve taught me to savour life. To properly breathe in and cement those moments into my soul. Kids really really do grow up so fast. In the early years when autism felt like an inescapable quagmire of doom, I never thought I’d get to this point. But even then there were good moments – I just found it harder to see them. They were certainly there though. See? (this video was made about 6 years ago):

Noise Sensitivity and Autism

Remember when you were little, playing hide and seek with your friends? That giggly, bubbly, sweaty-palmed, shaky crescendo of anticipation when you were the seeker, knowing that any second one of your pals would burst out of their hiding place when you got really close and shout "BOO!" in your face at full volume. That big adrenaline hit of being jump-scared - magnified by the fact that you knew it was coming.... any second now... ooooh, not there..... heeee heeee heeee.... any minute ..... under the stairs?... no.... behind the curtaiBOOOOOOOO!!!!!! (cue hysterical giggling for 2 minutes).

Now replace the fun game with something that is life-threatening. You know it is life-threatening because your brain tells you so. Then take that same crescendo of anticipation but replace the giggly fun with fear. Terror, actually. You are now in full fight or flight mode. Your pupils dilate, your heart pumps, your muscles tense, a whole bunch of stress hormones have been dumped into your bloodstream and the only thing that is real to you is the anticipation of the impending threat to your life. Any second now...not now....any second....I know it's cominCASHIER NUMBER 4 PLEASE!!!!! Boom. (cue cortisol hit and J hits the floor of the bank in a faint)

Most people on the autism spectrum have some sensory processing issues. For J, the strongest issue by far is his sensitivity to sudden noise. Actually his sensitivity to the anticipation of the sudden noise. Tannoys/Sirens/Fire Alarms/Car Alarms/Church Bells/Lawn Mowers/Hoovers. You get the picture. It's rare nowadays for him to go the full faint - the situation above happened a couple of weeks ago for the first time in a while. But for J, the build up and fight or flight reaction is a very common occurrence.  Supermarket  and shop announcements carry a special fear for J - I always thought it was just the sound frequency, but I recently realised that it's also the fact that a disembodied voice is booming all around from every direction, when he's already on the sensory rollercoaster of colours/sounds/people/smells that is a supermarket.

For the majority of us, loud unexpected noises might momentarily make us jump, but our brains quickly rationalise and filter out the noises and we carry on without a worry. But if your brain isn't good at rationalising, your belief systems are hard-wired and as rigid as steel, your brain magnifies and distorts all noises and you have the memory of a computer, you're not going to brush yourself off and carry on as if nothing happened. You will develop a fear of that fear - that fight or flight feeling and you will never want to leave the safety of your home ever again.

So, what can you do as a parent? You know that your child is in agony - mentally and physically. The short answer is that I still don't know that answer. I sometimes feel like we've tried everything and nothing has "worked". If anyone has THE ANSWER, I'd like to know immediately please but, for now, here are some observations I've made over J's 8 years:

Things that didn't work:

Assuring your child that "it's ok, it was only a siren/alarm etc. It won't hurt you"

Utterly pointless. To them it isn't ok (rigid as steel - remember). To them it was unbearable and their system is reeling from the assault of fear and shock.

Trying to make sure that your child isn't exposed to these noises.

Impossible and counter productive. Believe me, we've tried! Yes, a parent's instinct is to protect their kids from harm  but there's always something (holiday in beautiful peaceful hamlet in Devon = happened to fall on the one week of the year that there was a bell-ringers convention in the tiny church - all day/all evening - argggh!) We started shopping online; avoided shopping centres, swimming pools - anywhere with tannoys. Basically by doing this we were buying into J's fear and confirming that his fear was justified.

Listening Programmes - Auditory Integration (weirdy loopy music programme to realign brain wirings)

Meh. Seemed to help a little bit while we were making J sit and listen through special (and VERY VERY expensive) headphones twice a day for half hour sittings. As soon as we stopped, it stopped working.

Ear Defenders and every other type of earplug known to man

Meh. If worn all the time, the auditory sensitivity can get much worse. They act as a security blanket now - J likes to have them near him at all times, but very rarely puts them on (and he's eaten 4 pairs - a whole other sensory issue there...)!

Thinking that the more you expose a child to a noise, they will eventually get used to it.

Rubbish (in my opinion). Memory of a computer remember? Each time they get that fight or flight reaction, the memory is logged for future reference, the belief that the noise is BAD is made even more rigid than the steeliest steel.

Things that have helped:

Medication. 

Yup. We got there after years of soul searching and resistance (from me). It seemed so wrong. But, when you've tried all else and your kid's quality of life is really suffering.... Basically, unless you've walked in our shoes on this one....Well, the tiniest dose known to man of an anti anxiety drug and the sun came out for J. For six whole weeks. Then the noise thing came back but that gap allowed us to change our ways (all of the above!) and to make some tentative headway (all of the below:)

Modelling that you, the parent, are fine with the noise

This is very different to telling your kid that he should be fine with it too. When a siren goes screeching past and J hits the deck, we don't "poor you" and "it's nearly gone" etc. We carry on with what we're doing and let J do his thing. Very gradually - over a good few months, J has developed a coping strategy of his own. He has discovered that if he shouts (the same phrase every time) really really loudly, the output he is making, reduces the input of the noise. This is a work in progress as it's not totally socially acceptable for when adulthood looms but J has discovered this on his own and it works for him for now.

Peer Pressure

J likes to follow rules. When he's at school (notsomuch at home!) he likes to get it "right". When all his peers are modelling that noise is not bothersome to them, J can now copy his peers and hold his reaction in until he gets home. And then explode and work through it in his own space. I think this is an amazing feat of bravery. This is one of many lessons that J and all people on the spectrum have to learn by rote - totally unnatural to them, but necessary for existing in society.

Accepting that even though J will never get used to sudden loud noises or the terrible feeling of fight or flight, he will find strategies to deal with his reactions to them. That's different to getting used to them. Hopefully, one day someone will develop something to take away this auditory sensitivity that so many people with autism struggle with. Hopefully they will hurry up with this.

Understanding that your child's reaction might seem strange to you but to them it is perfectly reasonable behaviour.

To you, seeing J passed out on the floor of a bank because he heard a recorded announcement, might seem odd. It was only a recorded announcement. To J this is the equivalent to you or I being in a catastrophic pile up on the M4. In his world this is as normal a reaction as your reaction would be to a car crash in your world. Understand. Don't fan the flames. Just understand.

J's Understanding of Autism

We talk about it a lot. He asks about it a lot. We've made him a book. He's learning that he's different. This is heartbreaking but necessary. He is also learning that there are "rules" to be followed in order to be part of life. I'd like to teach him that there are also plenty of rules to be broken but we're not there yet. Hopefully, he's also learning that there are a lot of people in the world who understand, who care and love and want to help him and everyone in the world with autism. My biggest wish for J is that he gets as much fun and enjoyment out of his life as he can handle. We're getting there... Actually, he's getting there. He is utterly amazing.

The Autistic Computer - straight from the horse's mouth

J is beginning to ask about Autism. He is beginning to realise that he has some differences. I've been writing him a book to explain Autism a little bit...more on that another time. Suffice to say that I've spent hours and hours on it - researching, thinking, wondering, trying to find exactly the right words. And then G (my 11 year old who has Aspergers), emailed me his take on Autism:

The autistic computer

The processor is for processing sentences and words – an autistic computer has a slow processor that doesn’t work too well.

The graphics card is for processing patterns and images – the autistic computer has a great graphics card that can process patterns really well.

The RAM is for remembering things – the autistic computer is amazing at this, it’s like a 64GB NSA level super RAM.

The autistic computer operating system is like the old MS-DOS – it works fine and understands but you need to communicate with it in a different way to modern computers.

The autistic computer works brilliantly, just a bit differently to a normal computer.

On being the worst mum in the world

There are so many things that I do wrong:

I smoke (but I really really really want to stop)

I drink wine to numb myself before the bedtime routine starts (but I try to have a couple of days on the wagon every week)

I swear waaaay too much and enjoy it sometimes (but not in front of the kids... often.)

I hid behind a door yesterday in fits of stifled giggles when J shouted "King Bursterds" at the spiders in Cut the Rope.

I do not want the school PTA ladies to be my friends.

I only floss once a week.

I haven't grown out of Drum'n'Bass yet.

My handbag looks like a tiny zombie apocalypse has taken place in there.

I've given up sending Christmas cards and forget most people's birthdays.

I don't suffer fools gladly - or at all, these days.

I don't have a fancy kitchen extension.

I sometimes only wash my hair every 5 days.

The list could carry on and on. Basically, I'm a bit crap. Not at all the type of mother that I thought that mothers should be and certainly not the Yummy type of Mummy that you read about in glossy magazines.

And then, oh good grief, then there are my many parenting downfalls and, yes, there's the Autism thing but, Hell's teeth, woman! I am guilty of the following crimes:

My children's diets are pretty poor - oh have I tried to make it otherwise to no avail - but have now given up. J eats pizza most days and G has chicken nuggets. I bribe them to eat fruit.

Yep, there's another - I cook them separate meals - mug!

Both boys' special interests are now computer-related and they spend waaaay too much time in front of screens.

I've handed over homework duties to Dave because I can't do either of their maths any more.

They do not take vitamins.

I let them wear odd socks and occasionally retrieve favourite clothes out of the dirty laundry for them to wear if I haven't had time to do the washing.

I'm lax about making them wash hands before dinner unless totally caked with mud (for lax, read "has given up with this too"). 

Oh god - I don't even make J use cutlery to eat his pizza....!

I don't make them do any sports. None. At all. Apart from dog walking. Slowly, and often in different directions.

Agh! I didn't mean for it to be this way. Like most people, I knew exactly what type of mother I was going to be and exactly what type of kids I was going to have. Before I had kids. But, with the immortal words that tumbled from my lips (unrepeatable and not good) the moment I gave birth to my firstborn, that was all blown to a million pieces.  At that point the reality of parenting became very very real. And it's hard being a parent. Really hard. Whatever type of kids you have - Autism or not. I can't imagine anyone finding it a doddle - there's just so much responsibility and so many do's and don'ts and shoulds and must-haves and "What do you mean your children have never been on a plane?" and and and....

Breathe.

Breathe.

Breathe.

There.

And here's the thing, as I see it. The thing is that none of us are perfect. Even the ones who look perfect are not perfect (and I know for a F.A.C.T. that one of the PTA ladies used to be a crack whore.....or did I dream that...?). Anyhoo, we all choose which battles we want to fight. The lady who thinks it's more important to have a tidy house than spend time with her kids has chosen her battle. The mum who earns good money which buys her kids a great education has chosen hers. The mum who chose to stay at home rather than go back to work but can't give her kids material luxuries has chosen her battle. Nobody's right or wrong here, as long as we all do what we believe is right for our families. And OF COURSE we tear our hair out sweating the small stuff - it's our right as human beings and women to do this to ourselves. And it would be a world full of very VERY dull children - and very smug King Bursterds -  if we all got it right all the time!

Autism + Surfing = Happy!

I've been meaning to post this for several months now. I wanted to say something wordy and intelligent about it but, actually, it speaks for itself......

Despite the fact that it was blowing a hoolie, chucking it down with hail and was more than a little bit chilly, that smile is the biggest smile that J has ever smiled!

This was at Bantham beach in South Devon. J had a couple of lessons. http://discoverysurf.com/ The instructor showed J so much empathy and respect - his name is Harry. He is profoundly deaf but an amazing communicator - that lack of words couldn't have worked better for J. Words would have overloaded him in this extreme sensory situation. The sensation of catching waves was all that was required.

And just in case you didn't catch that smile, here it is again....!

How do you make it work with children with autism in the family?

I am often surprised by how differently other people live their lives. They can do some really nifty things that are totally alien to us. I'm not criticising or complaining - I am just genuinely in awe of the differences when I notice them. By "other people" I mean families who don't have autism as an ingredient. Neurotypical families. Of course I know that there really is no "normal" - life's rich tapestry and all that - but I am increasingly less aware of our differences unless I really think about them.

Here are a few of those things:

People can "pop" to the shops with their children without giving written notice.

People can attend parties and gatherings and their children merrily fit in with other children and look after themselves at these occasions.

Their children happily eat things that come from the earth or the tree.

Their children do after school clubs or go to childminders without it causing a nuclear explosion at home later.

Their children occupy themselves.

These families can go for a walk on a beach and actually keep on walking without stopping to examine every grain of sand or to fill their wellies with sea water!

These families can do a fun leisure activity that everyone in the family enjoys at the same time - together - all of them...

The list could go on and on. The fact of the matter is that these things seem like little miracles to me. I have no idea what "normal" is these days and, although there is no real "normal" there are a lot of societal expectations of children that are mostly do-able by "normal families": your child will ride a bike, have/attend and enjoy birthday parties, keep his clothes on in public, not make a "scene" after the age of 6?, play football, like going on playdates etc etc

And here's the thing: when you have one/two/three?? etc people on the Autistic Spectrum in your family, it is helpful to learn, pretty early on, that if you aspire to this type of "normal" then you will have a whole truck-load of unfulfilled expectations to bite you on the bum!

A wise woman recently said to me "Don't compare yourself or your family to something that is totally unachievable". This small nugget is possibly one of the most helpful things anyone has ever said to me and I realised that most of the times that I've felt desperate and heartbroken about my children's autism, I had been comparing my family to something that we can't be. That's not to say that we can't be amazing in our own way - my boys totally rock and I love them for exactly who they are. We are just never going to be a Neurotypical family.

In answer to the title of this post, I think that learning to discount the "normal" is the first and most important part of making life work for families with children with autism. Of course every family is different. Every autism family is different too so it's horses for courses here. I can only tell you about what helps us to make life work because some of it we've learnt the hard way and I wish someone had told me some of this when we started out on this journey.

So here goes:

Do what works for your family. Find your own pace of life - the pace that suits your children and you. As much as it would be lovely to attend all parties/weddings/bbq's/bar mitzvahs/concerts etc, if it's really not going to work for your kids, then find a way to do a little bit of it and avoid the rest. I'm not saying that all things that would be challenging should be avoided totally, but, if spending an entire day at a family wedding is going to be like Dante's Seventh Circle of Hell for all involved, then find a way to do a bite-sized chunk of it with your child/children that will be achievable and enjoyable. The worst mistakes we made early on were pretending that we could manage these things and causing J/G and us excruciating amounts of stress and a whole load of knock-on anxiety to boot.

I do sometimes feel that my little family are in one of those videos where we are operating at normal speed and everyone around us is speeded up. But that's ok because that works for us. I'm not saying that that doesn't scald and hurt sometimes, but the alternative - constantly running to keep up and causing my kids large amounts of stress - is much worse than the occasional (and getting rarer) feeling of being left behind by the world.

The next thing that I think is important is to always follow your gut feeling. There are so many autism experts and so much information and advice - a lot of it conflicting - out there. It can be so confusing. I recently saw a video on YouTube about the "biomedical" approach to "cure" autism. It all makes such perfect sense when you watch something like that. But when we looked into that approach a while back and discovered that we were going to have to part with hundreds of pounds a month and force 20 different food supplements into J, who is not into any unapproved food items passing his lips.... Well... gut feeling says "NO". My gut feeling says a big resounding "YES" to never letting my kids feel like they're "broken"; to concentrating on all the brilliant things that they can do, not the things that they can't do; to never saying never; to reading and learning all the time and staying open to suggestions. My gut feeling said "Bring it on" to filling my house with dogs and cats because they have such a positive effect on all of us (and because we are at home rather a lot - taking it at our own pace, remember!) My gut feeling (yes, it IS a big gut to have all these feelings!) was that money would be wisely spent on Occupational Therapy for J - as long as it is Sensory Integration OT (more in another non-gut-related post). Basically, unless your gut feeling tells you to gorge on gargantuan amounts of chocolate, it is probably correct.

Visuals Visuals Visuals! Autism is a visual thing. Spoken words can be overwhelming at times. We always use visual schedules with J even for the little bits of life that seem obvious. Now that J can read, we do written lists with little sketches to back them up. A Saturday visual might be: Play at home - At 10:30 get ready to go to the Library - Walk to the Library with Mum - Chose a book - Walk home with Mum - Have lunch - Play - At 14:30 take Claude for his walk to B Park - Home for Dinner, Play, Bath, Toilet and Bed. It works for us. More complicated outings have separate, more detailed visuals.

Remember the Importance of Solitude to people on the Autistic Spectrum. Solitude is a great healer. When the proverbial hits the fan, quiet time on their own, doing something that they like, is the biggest restorative. I found this hard to accept, initially. A Mother's instinct is to "fix" and hug and soothe. I now know that solitude needs to come before these other things.

Remember that all behaviours have a root cause. My kids don't wind me up for the good of their health! If J suddenly starts biting himself or me, for example, there's normally a reason. Last time it was a wobbly tooth that he didn't know how to get out.

Look after yourself! OoOh I am bad at this one. But it is so so important. If I am operating on one spluttering cylinder, then I am rubbish at being a mum to my boys. I need time to be me sometimes - loud music and dancing and just being without being needed. Vital. I've also found a brilliant counsellor who I can see whenever I feel the need to "explode". Sometimes, I only need to see her every couple of months. Sometimes, when things are all a bit much, I can see her weekly. I can't begin to tell you how much this helps!

Remember that even if something has always worked before, it can all change at the drop of a hat! It's really good to be prepared for this - it took me by surprise the first time. Things and routines that seem totally set in stone can suddenly become defunct. Something else will always come along though...

Active Acceptance - as opposed to Passive Acceptance. I think that's what mostly what I'm banging on about. By "Active" Acceptance I mean that we are constantly learning more about our boys' autism. Reading, researching, trouble-shooting when things go wrong, tweaking, encouraging, pushing their boundaries. We are looking to the future, but never saying never. Passive acceptance would be using autism as an excuse to shut down and blame everything on the big bad A.

So. How do YOU make it work with children with autism in the family? I'd love to know how everyone else does it. I'm open to ideas and suggestions......By "making it work" I mean "functioning"/"enjoying being a family"/"having a good giggle now and again"etc etc. We're still learning all the time - we most certainly don't get it "right" every day of the week but we're getting closer to finding out what we all like and what we all need to be the Hughes Family and we're doing ok!

Pearls of SENCo wisdom

Last week I had a meeting at G's school with his teacher and the Special Educational Needs Coordinator. Well, I say the SENCo - actually she is also the Deputy Head of the primary school that G attends and she is ALWAYS too busy to talk to parents. She bustled in and out of the room - making like a headless chicken doing very very busy and important things.

G is not statemented. He has Aspergers Syndrome and is at the top end of the spectrum. But he does have Aspergers Syndrome. He's on School Action Plus. Needless to say, the SENCo has been too busy this half term to actually have an IEP meeting with us. So G has soldiered on - mostly fine - but his needs pretty much ignored.

So I'd called the meeting to discuss which areas of G's daily school life could be slightly tweaked to prevent him from coming home totally overloaded by his efforts at school.

The teacher is ok - pretty experienced but, also pretty unaware of how AS can affect children like G who mostly manage to hold themselves together at school. Children like G who are academically very bright.

We chatted about how G HATES sports and PE at school. Most Tuesdays G tells me that he's too unwell to go to school. It's sometimes a real struggle to get him there. There's an external company who do the PE - young Sports jocks who mostly seem to dislike any child that finds it hard to join in with something that they don't fully understand the rules of and everyone's running around and shouting and making too much noise and it's all really unpredictable and aaaagggghhhh find it necessary to either shout at G or let him sit crying on the sidelines. Phew. Poor kid. The only funny thing is that the main shouty jock dude has a name that sounds like something that rhymes with beenis....! Not really that funny but G struggles to find the silver lining in "PE Hell", as he calls it.

I asked whether there might be someone to support G and anyone else that finds PE hard - someone to HELP THEM TO JOIN IN not to sit it out feeling like failures. 

We never really got to the punch line because in bustled the SENCo to give me her undivided for 3 minutes! I'm going to cut to the chase here - we discussed other stuff but we got to talking about the secondary school that we're applying for for next September. And here's what the SENCO!!!! said:

"I'm going to give you some advice, Mrs Hughes (whoop whoop let me take note of these pearls of wisdom, thought I). If I were you (hushed tones used here, bit of a drum roll...) I wouldn't mention that G has Aspergers on his application form - it would label him, lump him in with those children with actual Special Needs...."(Did I actually just hear that correctly, thought I).

Oh.

My.

God. 

I've suspected that they thought I was a hysterical, trendy-label-demanding mum who couldn't leave her child alone. And they, clearly, do! I said this to her:

"G has AS. He IS labelled with that by his very neurological makeup. We never want this to be an excuse but it IS a very real reason why he finds some things hard. What we want for him is understanding. Acceptance. Recognition of his great skills. Not to be treated totally differently but supported to achieve the same things he'd achieve if he had a normally wired brain."

What I actually should have said is unprintable.

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.