Eating chocolate with my head in the sand!

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

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

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

I am worried that J is getting more autistic. 

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

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

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

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

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

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

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

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

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

Hooray for PhotoBooth!

Some Kids Do 'Ave 'Em - Parents..

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

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

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

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

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

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

1. 
   

the little group - the hard goodbye

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

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

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

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

the little group's mission is as follows:

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

We aim to provide - 

An irresistible invitation to participate

High levels of consistency

A high autism knowledge base within the team

A calm and clear environment 

Clearly communicated boundaries

Low numbers in each teaching group

Highly visual teaching methods 

Highly predictable routines "

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

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

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

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

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

Navel Gazing....

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

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

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

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

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

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

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

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

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

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

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

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

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

Rock 'n' Roll!

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

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

1) Fight like tigers

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Everything Starts With a P... Toilet Training

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

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

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

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

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

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

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

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

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

The plus sides:

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

G Mail

A lovely thing happened to me today....

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

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

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

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

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

The A to Z of J

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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