Loud and Proud - Happy Christmas!

This is J in his Christmas play - Babushka the Musical.

Two kids go before him and then....dramatic pause...a bit of a flick through his laminated words....a little false start.....and he's off!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! May not look like much but 6 months ago I wouldn't have dreamed in my wildest dreams that he'd be able to tolerate being in a room with 300 adults alongside his mainstream peer group, let alone perform perfectly. That's my boy! I'm so proud of him.

2010 has seen J turning from a anxious little knot into a confident, funny, happy, train-obsessed (yep - got there in the end!) nearly 6 year old boy! He's even recently agreed to upgrading from his much-loved and long-hung-onto cotbed to a spanking new set of bunkbeds (his "6+ bed" - all to do with Calpol, apparently...?!) He insists on being called The Dude these days and dude he is! Rock on, Dude - I have a feeling that 2011 is going to be your year!

Happy Christmas to all xxxxx

Ten Ways to Live a Quieter Life (or How to Retain a Shred of Sanity!)

Don't get me wrong, this is in no way a preachy, smug lecture - purely a mental note to myself. One man's meat is another man's poison and all that. What works for one child doesn't necessarily work for another. So, in no particular order, these are just some of the things that help us to help J:

1. Dust off your sense of humour. The comedy stair-walking mime is an essential string to my bow, as is the perfect arm-pit pump! My Vic and Bob-style "Oh, I fell" move has got us out of many a sticky corner. For J, people and animals falling over is hilarious. Not very PC but funny, nonetheless. Sometimes distraction is my only weapon against an all-out meltdown. Unfortunately there are no guarantees that this will work and I often end up looking like a prize plum! Our household is quite a noisy one. J's volume control is either set to very quiet or very very loud. A common sound chez Hughes is that of giggling. I love that. J responds well to a bit of banana-skin slapstick and I'm delighted to say that he makes us laugh a lot too.
2. Street cred, looking glam, walking the walk, talking the talk: forget it!!! Worrying what people think is exhausting. Grow thick skin and embrace your inner plonker.
3. Take Hart - yep, find the artist within. Stick men are fine. Actually the simpler and easier to understand, the better. Visual schedules are all to J. We never leave home without one. Sequencing is a problem for people with autism, so a clear reminder on a bit of paper in J's pocket is very reassuring. We show him: who is going, how we're getting there, where we're going, what we'll do there, how we'll get back and that we're getting home at the end of it. For a chap with high levels of anxiety, this is essential stuff.
4. Patience is more than a virtue. Breathe, Breathe, Breathe. It will soon be over. Breathe, Breathe, Breathe. Count to ten. Count to 100. Count to 500. At this point, leave the room, run outside and kick something soft really hard (try to avoid the cat). A lot of patience is required with kids generally. Multiply that by 1000 and you'll need that much patience. Study Mother Theresa, Ghandi, Take That - whatever. Just be patient!
5. The Sound of Music. God, I love that film. It's like a big hug from your granny. Sorry, I digress....... Music is magical. Sometimes when asked a question like "Do you want sausages or chicken for your tea?", J appears not to hear me. I try again, clear and precise. Still nothing. I try again, this time with eye contact at his level. Nada......... Recently, I've discovered that if I sing the question to him (particularly in the style of Julie Andrews), I get an answer!! Normally a musical answer, but, hey, sausages it is lalalalala!
6. If you are an ungodly fishwife like me and a little swear bomb accidentally falls from your lips when you stub your toe/skid in spilt food/loose patience (sigh)..whatever... make sure that the word can be easily converted when it is inevitably echoed back to you - duck, spit, wrap, dollops, kiss, boring duck wigs (answers on a postcard for that one!) etc - you get the picture!
7. Unless you are a total masochist, never EVER go to a park, playground, swimming pool etc without phoning ahead to check that it IS open and the wrong type of leaves/staff plague haven't forced it to close unexpectedly. Hell hath no fury like J with an unfulfilled expectation. If you forget to do this (like I do half the time), laminate a card with the word "OOPS!" on it. Carry it everywhere. Actually, just get this word tattooed onto yourself. It is really useful. It is teaching J that some situations don't go to plan and that us adults do make mistakes.
8. Don't be precious about your house. Even after 3 hours of (boring boring boring) housework, it will look like a gang of rioting mongeese have rushed through it within ten minutes of the boys coming home. Wait until your home looks like Steptoe's yard before unearthing the hoover - take a photo when it's clean and tidy.
9. Remove your head from your arse now and again. You may be totally embroiled in the intricacies of caring for your kids but your friends and family deserve time and attention too. I'm bad at this. Life goes on outside and you need to show these lovely people some love and appreciation for everything that they do (you know who you are xxx)
10. Expect the unexpected - good and bad. My boys amaze me every day - little acts of kindness from G; a new song from J; a brilliant new drawing; an entire draw-full of socks all over G's bedroom floor; a new piece of poster-paint art on our white (bought pre-kids!) sofa; a sudden punch-up over who is and isn't allowed in the living room (give me strength!); a misplaced poo; a very very long game of hide and seek (!); feeling like you can't take another minute when suddenly it all gets better again; and a sudden "I love Mummy" from J...... It rarely happens how you think it will.

It's a big learning curve. The Autistic Spectrum is massive. There are no guide books on your individual child. This list grows all the time and changes continually. The secret is to go with the flow and remember that you'll get it wrong a lot of the time. But no cash bonus/medal/lottery win etc can possibly match the brilliant feeling you get when you get it right!

From Limbo to LaLa

My map-reading skills never were up to much but this is ridiculous - I can't get out of this sodding one-way system! The problem is that I can't find the correct map. I've been floundering about in this rough terrain for a while now and I'm beginning to realise that I should stop looking for the damn map and just start running before the wind changes and my brain irreversibly turns to custard. See, the thing is that I'm a bit stuck. The area I'm lost in is that Limboland between J being diagnosed with autism and the place where everything stops starting with an A and I get on with Life.

This first chapter has been a massive learning curve of acceptance and discovering what works for J and for the whole Hughes family. It's been a rollercoaster ride. There have been flurries of great activity - trouble-shooting those terrible times when it's all gone a bit Pete Tong - for J, for G, for me and Dave - finding solutions and putting them into action. There have also been nice even plateaux where we've downgraded from Red Alert to Floodwatch and we've been able to breathe a bit more easily.

Towards the end of 2009 things were really tricky with J - it was virtually impossible to connect with him. He obviously felt out of control with a house move and a new school and was compensating by exerting his "control" over me very effectively! I seemed to be losing him forever to that inexorable lure of self. It didn't feel at all good. Things were so difficult with G (a whole other subject..). I had a good look at all the various "solutions'. Moving us all to a deserted island where we could run wild and free, minus environmental assaults, minus society's constraints and judgements, riding wild horses and clean waves and generally lolling about and being at one with nature - unfortunately was not an option. So, more predictably, I instigated specialist diets (only difference it made was a big dent in waning bank balance); then 20 weeks of The Listening Programme (which amounts to 50 hours of J listening to acoustically modified music to reach the parts of his brain that nothing else can reach and was fantastic, incidentally); then we managed to get Sensory Integration Occupational Therapy included on J's Statement (which means that the LEA have an obligation to provide this for J - YAY!). Timers, strong routines and visual schedules have taken centre stage, as usual. We've moved back down to Floodwatch - setting all the daily routines in stone so that everyone knows what to expect and when to expect it and we all feel in control and fine and dandy.
Hunky dory.......................?

AAAAAAAAAAAAAAAAGGGGGGGGGGGGGGGHHHHHHHHHHHHHHHH! No. Not effing Hunky Dory at all!! I know that at least one half of Hughes family members are happy with this battened-down, reined-in, orderly living, but, I, for one, long for spontaneity, disorder and surprises once in a while!!! A crazy world where friends can casually drop in for a coffee without causing an anxiety attack in J. To even consider J having a sleepover at his grandparents' houses. A world where neighbours could casually invite J round for a play and he'd want to go. To be able to go on holiday and not have 2 weeks' fall-out afterwards where J is frantically reinstating his sense of control. To go to a wedding/bbq with the boys and be able to talk to grown ups without constantly shadowing J to make sure he doesn't escape. A world where I don't have to make "lifts" out of the sofa cushions for 2 hours each day of the summer holidays.......................
This list could go on and on. You know I love my boys for exactly who they are, Right? I do. I really do but in this Limboland place I still sometimes secretly wish things were different. Easier. I miss what I thought I was going to have but never will - if that makes any sense. And then I feel guilty. And that's where I become stuck. Guilt is such a useless emotion - doesn't actually solve anything. Just makes you feel crappy and hopeless and sorry for yourself. Depressed even.

The route that I've been hunting for has a big flashing Las Vegas-style signpost, pointing all the way out of Limboland and directly into LaLaLand. Just like that! Unfortunately, however, it's dawning on me that this mystical place doesn't exist. I'm living my life like a waiting game. Waiting to find The Only Way to make J's life better. Waiting to find The Answer to why G struggles with his life and to fix that for him too. Waiting to win the lottery. Waiting to stop feeling guilty for never being enough or doing enough for my kids. The truth is that we're HERE. There are no big answers apart from getting on with getting on. Good enough IS good enough. (can I repeat myself any more to make my point?! can I repeat myself any more to make my point?!)

This poem, by Emily Perl Kingsley sums it up nicely:

Welcome to Holland

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Claude

This is a long-overdue post about Claude, our beautiful, biddable, chilled but chipper, lifesaver of a Labrador. I've meant to write about him for a good two years - I've stood up in front of roomfuls of real-live grown up people twice now to talk about him for fundraisers for Dogs for the Disabled (more on that later) but somehow words have evaded me here up til now. I'm very aware that blathering on about one's pets can seem like a terrible affectation - nearly as bad as knitting jumpers with your beloved pet's face emblazoned on the front - so, although I have a lot to say on the subject, I'll try to keep the fluffy eulogising to a minimum (and won't even include pictures of me wearing my Claude knit!!! - joking - really...!)

Claude is now a fully grown dog of 2. He's gorgeous - breath like a halitoid tramp - but gorgeous. When I say that he is a lifesaver I'm exaggerating a tad (Drama Queen - MOI?!) but he's definitely not just a dog. He's a family therapist, chief comforter, arbitrator, speech therapist, marriage guidance counsellor, jester, personal trainer and all round good egg. The phrase "man's best friend" doesn't come from nowhere. He is man, woman and boys' best friend around here (actually cat's as well - he and our feisty feline, Sass, are inseparable). He is my constant companion and rock - happy to share my joys and put up with any teary down days. He's always delighted to see any one of us and - even half an hour's absence merits a full hopping, wagging, toothy-grinning greeting from Claude. He considers it his duty to see J onto the school bus in the mornings and to sit waiting by the gate for him - rain or shine - when he returns. He hops into bed with G for his morning cuddles while I get J up and ready. He is gentle and patient and has "turned" many a dog-phobic child into one who clamours for his very own Claude! Phew - am getting carried away here. Let's just say he's pretty great for one who needs his doings picked up in a plastic bag!


It all started when we were wading about in the seeming quagmire of J's new diagnosis. As an antidote to the reams of medical jargon, "cures" and therapies that I'd been trailing through, I read a book called "A Friend Like Henry" that my sister had sent me. It is the story of a family wrestling with their son's fairly severe autism whose lives were turned around by getting a dog. This lovely (and true) story prompted the next flurry of Googling and researching and we came across "Autism Assistance Dogs". These dogs are incredible - trained to keep the kids safe, break tantrums and to be friends to kids with autism - but, sadly, extremely few and far between in this country - only 2 organisations are currently training these remarkable creatures (Dogs for the Disabled being one) and the waiting lists are enormous. Along with the fact that Dave and I are hideously impatient people, we also decided that a dog to specifically help J would only serve to tip the precarious balance of our family even further at that point. What we really wanted was something to take the prime focus of our lives off J's autism and to help us to be us again - G needed a canine friend just as much as J and, acually, so did we!


More Googling led to the discovery that not all breeders are happy to hand over a puppy to a family containing a child with "autism - that's mental illness isn't it - sorry love, couldn't do that to a dog"!!!! Really - thanks Mr Frederick Ukker of Farnham! However, we'd learnt early on in J's life that our gut feelings tend to be worth sticking with, and having decided that only a Black Labrador would do, I persisted until we found the beautiful Poppy and her pups, residing in palatial splendour on the Putney banks of the River Thames. Poppy's owner couldn't have been more helpful and invited us to bring G and J over to hang out with the puppies. After all, J had never even so much as glanced at a dog so we had no idea whether he'd even like creatures of a canine persuasion. While G and I melted into fits of cooing over Claude and his plump, wagging siblings, J took no interest whatsoever and wandered off down the garden. Damn Damn Damn. Oh, but hang on, this complete lack of interest was by no means reciprocated by Poppy who had volunteered herself as J's guardian for the entire duration of our visit. She was never more than a whisker away from him for the hour that we were there. When J sat down, Poppy sat down. When J ran, Poppy ran. Now and again J would place a hand on her head, without looking at her. There was some kind of magic going on here and, being scientific types(!), that was good enough for me and Dave.

A few weeks, many visual schedules and "social stories" later, along with J's now obsessive viewing of the video clips we'd made of the puppies, we collected a 12 week old Claude. And that.... gulp...tear (still gets me).. was the first day that J ever spoke to anyone directly. "Hello Claude. You are a dog" - full (and I mean full) eye contact, along with blushes of delight as he bustled around finding toys for our new family member and occasionally rushed off to his letter bricks to spell out his new best friend's name.



It didn't take long for the blanket of love that Claude inspired to envelop us and pretty much everyone who met him. (Would it ruin the moment to add that it didn't take long for the fabric of the carpet to become more dog pee and little black hairs than man made fibres too..?!) Those first few months were by no means plain sailing - it was a lot of fun but tougher lessons were also learnt - cause/effect being one of them when J discovered that if you pull Claude's ears/tail then he squeaks pleasingly. Up to this point, J hadn't associated the pain that he felt when he was hurt in any way with pain that others felt. In autism there is a classic lack of empathy so if J yanked out a handful of my hair and I screamed or if the puppy had his tail pulled and squeaked, J didn't understand that the pain we felt was the same sensation as the pain he felt when he bashed his head/knee etc. I totally drew the line at Claude being hurt so made a very clear rule and a rather fine "social story" about why we don't hurt others and spent several weeks never more than a foot away from J when he was near Claude to prevent any repeat offences - it was knackering but it worked.

The other benefits and lessons are too many and varied to go into in too much detail (that dog deserves a book really) but in short:

- Claude's toilet training gave J's toilet training the impetus it had hitherto lacked - J finally realised that neither he nor the dog would be praised for peeing in a glorious arc across the living room! He also discovered that pee comes from within and is not just a disconnected wet feeling hitting your feet - this after much scrutiny of Claude's "demonstrations"!
- Both boys basked in the loyalty that Claude provided - their squeals of mirth and merriment would bring Claude running to join in the fun, just as their tears and traumas would bring a wagging Claude to rescue them from their woes.
- When out and about with a roly poly puppy, it is impossible to avoid PEOPLE. The world loves a puppy, and however much J would like those PEOPLE to keep their puppy stroking, cooing gooeyness to themselves, the lure of those brown eyes and a wagging tail is too strong for these PEOPLE. J had to get used to the fact that when we were out with Claude, PEOPLE would come and talk to us. It took quite some time for him to become accustomed to this "intrusion" but eventually he began to tolerate it.
- Children with autism can be tenacious and obsessive. Small puppies can be tenacious and obsessive. Give them a tug of war toy and they'll amuse each other for at least an hour. Reeeesult!
- Having a small defenceless puppy in the family finally stopped every conversation that me and Dave had being about autism and kids - we'd been floundering about, trying to come to terms with J's autism and it was somewhat engulfing us. But somehow, by adding in the rhythm of having to walk, feed and water the dog, we managed to break the loop we'd got stuck in.

Suffice to say that we were all pretty chuffed with Claude. He excelled at his training classes, was easy and fun to take out for walks and was happy to be mobbed at the school gates by his very own fan club of kids. At that point Dogs for the Disabled contacted us, inviting us onto the pilot scheme for a course they were setting up, not for Autism Assistance Dogs, but for their PAWS workshops (Parents Autism Workshops and Support) - a general guide to getting the right dog (ok so we'd done this bit and realised we'd been pretty lucky with Claude - not all dogs would be fit for the task); and then, more interestingly to me, a large chunk of the workshops was working with D for D's dogs and being shown how to maximise the relationship between a child with autism and a pet dog!
(look - there's me and Claude on their website!!) http://www.dogsforthedisabled.org/partnerships/Autism_services_for_children
I loved these workshops - the Dogs for the Disabled people really know their stuff and clearly all adore their work. They have a huge enthusiasm for what they do and their methods of training the dogs are fascinating. Using a clicker (little metal thing that makes a clicky sound which indicates that the dog is doing it right, precipitating a tasty reward) - breaking the tasks into tiny, achievable segments and allowing the dogs to work out for themselves what it is that you want them to do, rewarding them grandly at each stage. It is a very gentle way of training, and the dogs LOVE it. I thought it would take ages for Claude to pick up all this training but, within half an hour of using these methods with him at home, he was getting the hang of it nicely. By the end of the first month of using these methods, Claude could do the following:
- Touch his nose to J, when he was having a meltdown. No mean feat with all the yelling and flailing around that goes with this. The point is not for Claude to make like Nanny McPhee and stop the tantrum, but rather for this little soft nudge to give a nanosecond of a pause in J's distress, allowing me to get in and calm him down. Startlingly effective.
- Walk on a double lead, with J holding onto one handle and me holding the other - a total revelation for me to have all the family going in the same direction at the same time!
- Stylishly model new or offensive items of clothing that J is refusing to wear (a school tie being a good example), causing much amusement all round and the eventual acceptance of the clothes from J.
- Demonstrate with gusto how to sample a new, unfamiliar food type.
- Play the keyboard with his nose!!!! Ok, so not strictly what D for D had advised but me and G had a high old time teaching him this and he was mighty proud of his musical prowess!


With or without specialist training, Claude would always have been an exceptional dog. But the training showed us how to get the most out of the relationship between a child with autism and a hound. And that is the point. It is a relationship. An exceedingly strong one - not always noticeable to the naked eye but a very unconditional one. Most of us have so many relationships - with family, friends, teachers, colleagues, people on the street, etc, etc - that we can hardly count them. J's "tribe" is much smaller than most - and will probably remain so for the rest of his life. Give him some pens and paper or a child to play with and he'd go for the first option every time. This is who he is and, although what he lacks in natural understanding of human relationships, he will be able to learn by rote in the future, I believe that he will always be happiest with just a few trusted tribe-members and Claude is certainly one of the chosen few. That dog is truly part of our family and, looking at him as we speak - fast asleep, legs in the air, jowls dream-eating something delicious, Sass snuggled into his neck, I couldn't imagine any more effective "cure" for our family.

Danger Boy

J refers to himself as "Danger Boy". He likes saying this - thinks it's a big joke. Normally he shouts this with great glee from the top of the (wrong side) of the bannisters, often while wearing nothing but one tatty glove - a perfect superhero! Thing is that J's autism means that he doesn't have the imagination to visualise what could happen if he slipped and fell, that is, even though it might have actually happened several times before. Danger Boy has not a clue about danger but can spell it no problem and write it perfectly in Times New Roman font! Oh, and did I mention that Danger Boy is more than a tad accident prone too.....

I, on the other hand, am Neurotic Woman to his Danger Boy! I see the world like a 1970's safety poster: sharp corners, head-height counters, inclines, wires to be tripped over, pound coins to swallow (yep - that one never did reappear..), bodies of water to fall into or at best slightly splash one's clothing, causing a whole outfit change in J. I'm not naturally like this - I can live by the seat of my pants with the best of them - Hell! I have Viking blood in my veins. Personally I like a bit of adrenaline but, where J is concerned, we've had way too much history for me to be lackadaisical where safety issues are concerned. I'm never far from J when he's in the house but you can guarantee that the second I go and spend some time chatting to G on the trampoline, J will catapault himself from the top of the telly to the marble fireplace, head first.

The simplest trip out can be fraught with danger. Being a superhero, Danger Boy is not a keen hand holder and has a slippery superpower of being able to almost dislocate his shoulders/wrists in a bid to escape, if grabbed. He doesn't like to walk at the same pace as the rest of us and normally trails about 20 yards behind, favouring the outer-most kerb stones to hop along. Danger Boy has been known to skip, without warning into oncoming traffic and likes to balance on brick walls and bollards. Add to that, the rare superpower of becoming invisible in shops.....

Reins! Did somebody say Reins? Dammit - would never have thought of that if several tutting passers-by hadn't proffered this marvellous idea in a "your child is a total danger to himself and society - rein him up, lady" kind of way. Well, hello, do you not think I have a cupboardful of the bastard things - little backpack ones, wrist ones, ones with letters of the alphabet on........ Have you ever seen a kitten wearing a collar for the first time? Well - Danger Boy doesn't do reins. We've tried. Say no more.

Add to this cocktail of potential disasters the fact that J - although he rarely stops moving and has the energy levels of an Ever Ready Bunny - easily becomes overloaded in the sensory department so, at the midway point of a trip to the shops, can suddenly stop sharp, pupils dilated and be almost incapable of walking another step. Up till recently I would carry him home, but at 22kilos my back has called time on this habit.

So we have danger. We have sensory overload. And we have G. G, our ever-sensitive 8 year old has certainly inherited J's share of imagination. He sees danger in gambolling lambs and frequently asks things like "when is the world going to end". He's struggling with his brother's autism and, although he can be sweeter than any child should ever have to be to their sibling, his default setting on the matter is currently one of fury. He gets so upset about J's Danger Boy antics that he often refuses to come out with us. So the end result of one of our trips out is G, jangling with nerves, frustration and fury; J clinging to me like a limpet and me limping like a sciatic nonagenarian. There's many a time that we've crawled over our doorstep and collapsed in a sobbing heap on the kitchen floor.

Straws. Camel's Backs. Something had to give. A few sneaky peaks at the internet revealed a whole world of Special Needs Pushchairs - huge chariots of freedom - with huge price tags to match. So I applied for a grant from a local charity, explaining our predicament. Et voila! One giant sized Maclaren Major Elite with giant sized, special needs-resistant accessories for the beleaguered looking family on the kitchen floor.

Now, this is no stream-lined Smugaboo. No, this is a beast of a thing and might as well have flashing lights and bells, highlighting the fact that it's occupant was in some way different to his peers. But is that any bad thing? J doesn't care - to him it's a rolling sanctuary from the world which he finds so challenging. G is happy a) because "it makes a great telly chair" and b) because he doesn't need to fret about his brother any more. And me? Well, I really didn't know how I'd feel but firstly I want J to be safe, secondly I want G to be less stressed and thirdly, have had enough hard stares, tuts and even some "that child needs a good smacking" comments in the past to think "Sod it, let's give it a go".

We set sail on our maiden voyage for a trip into Kingston. J instantly took to his "Medium Boy Pushchair". G trotted alongside, chatting happily. Nobody tried to run into the road. None of the normal hesitation, deviation or repetition was exhibited. Nobody tried to squeeze through the railings on Kingston Bridge. I managed to buy the 2 things I'd set out to buy. Nobody got lost in the shop. A shop assistant fell over herself to come and hold the doors open. People smiled at us. Cars stopped to let us cross. We even managed an unscheduled trip to the playground on the way home.

And Danger Boy? He wasn't over hyped, he was smiling and repeating to himself "J is safe. It is safe in my medium boy pushchair".

Afterwards my friend, who has a fairly recent spinal injury and is a wheelchair user, asked how I felt, pushing J.

1) I felt vastly relieved that trips out can be straight forward

2) I felt delighted that J's autism doesn't have to impact on G every time we leave the house

3) I felt a bit envious of families who don't have to even think about this type of thing

4) I felt guilty for even thinking number 3

5) I felt surprised by the complete U-turn in strangers' reactions to us when they could see that J had some type of "special need"

6) I felt worried that I had Munchausens by Proxy for being pleased that strangers were smiling at us!

7) I felt sad that J had always felt so unsafe on previous trips

8) I felt really really really proud of my little superhero.

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...).