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

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

A Dads Perspective

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

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

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

Nerds United

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

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

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

95%

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

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

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

Double Teaming

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

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

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

Who cares for the carer?

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

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

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

And finally...

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

Do we live a 'normal' life - no,

Is it easy - no,

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Eating chocolate with my head in the sand!

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!
   

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