Some Days......

Some days..... are totally shit. Like today. Some days autism wins, totally squashes me and leaves me like a rabbit in the headlights which are glaringly spelling out just how cruel this whole thing is. It's just too big sometimes. Some days I'm small and f**king angry and fed up with nothing being simple, with having to trouble shoot every little trip to the bloody toilet and every single time we need to walk the 50 metres out of our gate to get a pint of sodding milk. I don't want to rush, full speed to our top floor because J is trying to follow the cat out of the window onto the roof. Panic panic panic (all on the inside, you understand: to J I look calm, almost nonchalant, as I lure him back inside and reconnect the "child proof" lock). It's not fair and I want to curl up in a corner and cry and make the autism go away.

So, half term has come and gone. It's actually been lovely. J even got invited to a party - and went - and loved it! And why has it been lovely? Because every blinking single waking minute has come with a visual schedule and a shit load of patience, and making a million bloody paper trains and listening endlessly to talk about video games that I don't care about - just to keep the peace. Oil the wheels. Keep the boys happy. We've got through it but I'm hollowed out with the effort that it's taken. And it was only a week long. And the bruises.... and the fact that my whole body aches from carrying and comforting J when things have inevitably wandered off-schedule... I'm just tired. Tired to the inside of my soul. Numb.

And tomorrow I'll be fine. It's ok - it really is. I CAN do this. It's not a thankless task because I see the difference that every little effort makes to my kids. It's not a perfect life, but it's ours. And I'll bring in a JCB to clear all the crap out of the house - restore order. Me and Claude will get back into our routine of blissfully free, battery-charging walks in the park. Spring is coming - thank F**k. It'll be fine. No fixing required. Normal service will be resumed.

Labelled With Love (Alphabet Street?)

Tall, stumpy, beautiful, minger, fat, skinny, clever, thick, odd, boring, quirky, loud, lazy, blonde, ginger, selfish, slutty, bald, hirstute.... Labels are all around. They are attributed to us to mark out our differences to the herd so that we can sort out life's rich tapestry into pigeon-holeable categories. Us humanoids are quick to judge and categorise - presumably some deep-rooted self-preservation instinct.

However, the subject of labelling kids - to willingly attach a label, highlighting their differences, to your own flesh and blood - brings a whole orchestra of tooth-sucking and "expert" (you know the type I mean) opinions! "There's a label for everything these days", "ooh people are so quick to label their children - we're getting so American"!!!!! "It's all to do with Bad Parenting" (?!!!) There are all sorts of negative articles about the stigma and damage that labels can bring.

When I was at school I can't remember any of my classmates sporting any clinical diagnoses of anything. There was always the "square", the "boffin", the "thicko" or the "weirdo". Yep - who needed educational psychologists - anyone slightly different and we just made up our own labels and stuck them on with super-long-lasting glue. Kids are pretty unforgiving. Differences scare them. Their form of self-preservation is group attack. Horrible. It makes me sick to my stomach that I might have had a part in this filthy show of human nature - I wish I could find those poor kids and apologise, be their friend, protect them.... Sigh. And what happened to them? Did a whole school career of being negatively defined by their classmates lead them to happy and fulfilling lives - god, I hope so. I hope they found their dreams and shouted "F**k You, losers - look at me in my big shiny car with my wonderful career and perfect life, you cruel bastards". But let's get real. They possibly have lives pitted with low self esteem, trust issues, depression etc etc etc. Oh how sorry I am. I just wanted to be "normal", part of the majority....not noticeably different...

Fast forward to now and most classrooms have at least one kid with a diagnosis of something: ADHD, Dyslexia, OCD, Dyspraxia, ASD - some kids even have two or more labels since a lot of these conditions go hand-in-hand - then they get a special collective label - "Alphabet Kids". Jaysus. Who knew?

So J is "labelled" with ASD (an Autistic Spectrum Disorder). High Functioning Autism. He has a Statement of Educational Needs. He gets Disability Allowance. He attends an ASD specific unit attached to a mainstream school. He gets speech therapy and occupational therapy. His label marks him out as different to "normal" kids of his age. And different he is - quirky, hilarious (his favourite word, incidentally!), scarily clever, socially inept and unable to deal with many everyday situations. His label is not debatable - he looks like an angel (when he's not constantly picking his nose!) but his "differences" are setting him apart from the crowd more and more as he gets older. However, he is in the right place, getting the right support and spends several sessions a week in a mainstream class (with support).

I have no issue with J's label and don't think I'd find anyone who does because his autism is fact. It is thankfully recognised as one of the big hitters these days. The ASD label brings much needed help and support (in some areas but not others....whole other post...grr)

It's the kids who are on the cusp of "normal" that fall through the gaps. The ones who, to all intents and purposes, can look like they're coping in a normal classroom setting. Many of the diagnoses that encompass what, on the surface, looks like "bad behaviour" are the tricky ones - this is the grey area that causes the tooth sucking debates. A lot of the behaviour looks like an exaggerated version of normal kid behaviour - figeting, bumping into things, hair twiddling, constant trips to the toilet, impulsiveness, lack of self control, too much talking, rudeness to figures of authority........ you get the idea. In a society where One Size of Education is supposed to Fit All (unless you're minted and can go Private) these Square Pegs are going to come to light. Particularly when they reach Secondary Education where teachers take no prisoners - it's all about results and not at all about individuals as far as I can gather (Shudder). This is where the debate comes in. Should they be labelled? Would a label make them feel more different or would it be a relief to them to know that they're neurologically programmed slightly differently to their buddies and can get some extra support? Would they grow out of their behaviour eventually without a diagnosis? Would a label become a self-fulfilling prophecy?

I really don't know the answer to this. I've thought about it a lot. I do wish people didn't use that word "Labelled" though - it sounds like a Stigma which is crazy considering the fact that many really successful people have/had similar conditions: Einstein - possibly Aspergers/ADHD; Mozart - possibly on the autistic spectrum/ADHD; Gary Newman - Aspergers; Stephen Wiltshire - High Functioning Autism; Daryl Hannah - mild autism; Tom Cruise - ADHD.... The list goes on. If the L word was replaced with "Recognised as being a perfectly acceptable and wonderful human being who struggles with a few areas of life and could really do with a bit of help now and again and a bit more understanding and a lot less judging" then that would be make the debate a no-brainer! To my mind - my adult mind - being different is just fine. Great, actually. I'm drawn to quirky interesting people. I love eccentrics. I've never particularly liked conforming. But kids hate to be different. So what would a label do to them? To their self esteem?

Actually, I think it depends on the individual. Differences are ok. It's down to whether those differences are causing an impairment for the child or not. Are they stressed out of their minds? Do they cry a lot? Is their work suffering? Are they getting told off a lot in class? Do they struggle with friendships? Are they being labelled anyway by the other kids? Are they angry and frustrated at home? Are they getting less and less invites to parties/playdates? If any of this is the case then, as parents, and knowing that there's help out there (and "help" doesn't always mean drugs - there's a whole host of other methods/therapies etc as well) , I think we'd be very very wrong (and cloyingly British!) to brush our concerns under the carpet and ignore the situation and refuse the label. If the child is quirky, but happy then all power to them but please please please watch out for any signs of bullying when they get into secondary school.

Blimey, it's a minefield. And here's the skinny: I know a little boy who is struggling. He says he's rubbish. He hates school. He finds it very very hard to sit still. Friendships are tricky for him. His self esteem is at rock bottom. He is hugely knowledgeable about the history of video games. His peers sometimes call him a cry baby. He has a lot of irrational fears. He is extremely bright and funny. He is very over-sensitive. He finds change very hard. He has a brother with autism. He is different. His parents don't want those differences to be seen as negatives and have started on the quest to get him some help to be happier. They have come to the conclusion that if a label will help and therefore make his life happier, then bring it on. He's a very loved, loving and totally cool kid. I should know. He's mine.

Control - Too Much, Too Little and a Happy New Year

Call me an old grump, but I'm not a big fan of New Year's Eve. I actually think I might be slightly allergic to it these days. All that expectation - a whole evening of waiting for the 2 frenzied minutes after the chimes have expelled the old and struck in the new, singing songs that nobody really knows the words to and then hugging drunken mankind. This fills up a couple of giddy minutes and then there's The Lull. The deflated pause where no one really knows quite what to do with themselves after all the frivolity has abruptly ended and you suddenly remember that mixing the grape and the grain is not clever. So what do we do.....? We start making the Resolutions....give up smoking/give up drinking/lose the Christmas podge/start exercising/become a supermodel/stop being lazy/stop all the fun stuff/promise to start supplementing my diet with health-enhancing seagull plop and other nasties..Yadda Yadda Yadda. Don't get me wrong, any other day of the year I'm right up for a good party. It's just the unrealistic vows of Control that the New Year brings with it: I WILL control my curves, I WILL get my life under control, I WILL make my body a temple...... All of this imposition of Control gives me the hump.

You see, Control is a big thing in our family. It runs our family sometimes. I don't like it. I've said before that I believe Anxiety is central to J's autism. And this anxiety stems from Control - J's desperate need for it and his feeling that every aspect of his life is lacking in it. The more out of control he feels, the more control he seeks.

"The need for control plays a huge part in the lives of all children with autism. Fear of losing control can trigger everything from anxiety to anger, to repetitive and challenging behaviours. Their need to maintain control can manifest in rigidity and strict routines. But if they have control then, invariably, the parent has lost it." (John Clements, Clinical Psychologist)

And ain't that the truth! The Christmas season is particularly challenging for J and his buddies on the Autistic Spectrum. I must add here that J now has several Christmases under his belt and each year he enjoys aspects of it a little bit more than he did the last time - he's not totally Bah Humbug. But he certainly finds it difficult. Aside from the prolonged build-up of mass excitement, the odd traditions (a tree indoors? are you blinking mad?!),the family visits, the strange act of having to sit at a table for meals (hot damn - is that what it's for?!), the hidden and often unwelcome "new things" that are called presents..... aside from all this, life is just thrown completely out of routine for a week. Sigh. J depends on his routines like he depends on air to breathe. Strangely, the more out of control life is for him, the more completely he surrenders to its loss at the time. To anyone other than me and Dave, J is taking life in his stride on the off-schedule occasions (holidays, large celebrations, first year at new school - all join Christmas on the list of challenges). J is quiet and biddable in these situations - he makes a bit like a fawn when it's approached by a predator - quiet and still. Very little eye contact and not a lot of speech (I know fawns can't speak - Bambi? Oh deer! Just get with the simile!).

And then Christmas is over. And then it's Dave's birthday. And then it's J's birthday. And then it's New Year.

And then it's all over. The coast is clear. Routines are reinstated. And then it's time to regain Control for J. Not being a brain surgeon, I'm making a bit of an uneducated stab here, but it's something to do with the Limbic System (regulates anxiety and memory) and its lack of communication with the Frontal Lobes (emotional control centres) that means that the autistic "pot of out-of-controlness" (that's my own scientific term!) does not self-empty with time. For J it's full until he empties it. And that emptying - regaining of control - is done when he feels completely safe. That is, when he's at home with me or Dave and, of course, Claude! We call this "The Fallout".

The first stage of this is endless drawing. 2 whole reams of paper in the last 10 days. These drawings used to be done by us, directed by J (see Everything Starts With an E). Then they became J's own intricate, perspective-perfect drawings of lifts. And now they are beautiful, detailed pictures of tube trains and stations. J has total control over what goes onto the paper. There's no uncertainty when you are in control of something (and with loss of control there is an overwhelming sense of uncertainty). My favourite picture is of the inside of a train carriage - fully detailed, doors, windows, and signs. With just one empty seat in the middle. When I asked him about it he said that it was "my seat". To him no other seat matters - he's not interested in his fellow passengers. In his drawings he can even control whether or not there are any other humans in his world.

Stage 2 is the Control of Mummy. It's quite common for kids with autism to use their parents as tools. When J doesn't want to touch something, he'll direct my hand to it instead. For J, if he can't control anything in his life, the first thing he wants to do is to control me. This goes against all parenting advice - "control that child", "show them who's boss" blah blah.. It's amazing that one so small can exert power over an adult to such a degree. The Control of Mummy phase has recently involved J holding me hostage in which ever room he wants to be in and sitting on me! I do love the cuddles but this control form means that I'm not even allowed one inch away from him. It's a godsend that I have good bladder control - extricating myself for a little penny-spending trip can take time. If the doorbell rings and I have to answer it, I have to carry a screaming, kicking J downstairs with me to the unwitting visitor (our postman must think I'm the worst mother in the world!). Parents are often mockingly criticised for being "afraid of their children's tantrums" and, Yah, Hello - guilty! J's meltdowns can be pretty scary. This is a whole other league to "normal" tantrums. This is acute fear and desperation. I tend to weigh up whether a tantrum is worth it or not.

I sound crap, don't I? Well, we've had 3 days of this now. Luckily G was safely out of the house at various play dates so neglect wasn't involved. This is all more measured than it sounds. J went back to school today. Full routine has now been reinstated. I have drawn up a visual schedule for the day's after-school activities - none of which involve taking me hostage. Boundary time! 3 days out of my life to help J get back on track doesn't seem too high a price to pay. If you imagine a world where nothing is ever certain; people are never predictable; your senses are continually shot to pieces and your one and only hope of feeling ok about yourself is your mummy....Well, sling it, SuperNanny! I've been accused of being both over-protective and molly coddling in the past. All I can say is that I'm doing my best. It breaks my heart to see my own flesh and blood in a state of high anxiety. Of course I'll do whatever it takes.

As a footnote, I just want to tell you one little story about J's need for control - an illustration of what on earth I've been wiffling on about:

A while ago - and not for the first time, J slipped off his precarious perch on the bannisters and fell backwards down the stairs. He was battered and bruised but physically ok. The subsequent crying, however, lasted for well over an hour. Obviously, falling downstairs is total loss of control. The only way that J could regain control was to reenact the whole incident in his own control. Yep - he wanted to throw himself back downstairs. Clearly, I wasn't going to let this happen. However, by putting in a few boundaries but letting him have the control, peace was restored. I put a large heap of cushions at the bottom of the stairs and let J chose whether he wanted to throw himself off stair 2 or stair 3. His control. My boundaries. Bazinga!

So, sorry - this has been a longy. It's a big issue, Control. Thanks for bearing with me. Along with saying Happy New Year I'd like to add that I think we should just all keep on trucking. Nirvana can wait. Do whatever rings your own particular bells. Keep your head above water. Now, who's for a great big January party?!

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.