Autism Awareness Year!

  April is Autism Awareness month and it just happens to be the month of birth for my first-born who is 12 tomorrow.  Back then I kept a diary, which proved to be useful when trying to remember things specialists kept asking me about once we hit that stage in his life.  I wished I'd kept it up, especially when, as happened the other day, I realised that Long Legs had stopped doing something and I couldn't remember when it had happened.  Funniest thing is, I can't remember what that thing is!  For those who have never read my blog, I have two boys both on the spectrum.  They are what is referred to as 'highly functioning'.  This, however, is not to be confused with 'less challenging'.  We have our daily challenges and our daily triumphs.

  So in the spirit of all things autism awareness-y (not a word I know) I had a crazy idea to document every single day of our lives for the next year before Long Legs becomes a teenager and the Short One reaches double digits.  It's a bit of a crazy experiment but documenting our days so I can look back and see how both of my boys change over the next year may prevent further incidents of 'when did he stop/start doing that?!'   My other objectives are to not just raise awareness that ASD exists, but to raise awareness about exactly how it manifests itself and therapies which are backed by research to improve the difficulties associated with ASD.  I hope to encourage any parent struggling to be heard, as I was myself many years ago, that they can be their child's strongest advocate and, by adequately educating themselves about the characteristics of ASD, they will feel empowered to do so.   On the topic of the name, I much prefer ASC - Autism Spectrum Condition, my boys are different, not less.  But for the sake of not confusing everyone who knows it as ASD, that's the way we'll go from here on.

  One thing that is of particular interest to me, having seen various articles, is just how much it costs to raise a child (or two) on the autism spectrum.  Us ASD parents all seem to spend money left, right and centre on things for our children but what are we actually spending?  I'm not going to record lost earnings, although the reality is a lot of parents don't work or have to give up jobs due to needing to be around for their child with ASD.  But you may be surprised by what I do include, you may wrinkle your face and think 'what is she on?', that cost is a luxury.

  Having gone back to Uni last year to do my postgraduate course on Autism, I learned all about evidence based practices (EBPs).  These are therapies and practices that have a proven benefit via extensive research that lead to positive outcomes for individuals on the spectrum.  There is lots out there claiming to be of benefit but not wanting to suffer the wrath of my Uni lecturer :), who incidentally is in the process of writing a book on parent empowerment, I will only talk about EBP's when I endeavour to rationalise every single thing I class as an expense that is related to my boys' condition.  As you will discover, not every attempt to provide therapy for our children comes in the form of a specialist therapy session. 

  It's going to be interesting experiment for me but I hope for anyone who reads this, they do manage to take something from it too and I can declare my autism awareness-y experiment a success!  I apologise in advance for typos, random garble and sentences that are far too long but if I am going to attempt to write something every day, I can anticipate them already.  In the meantime, I have a birthday cake to make :D Til tomorrow x

Please Dear God Are We Nearly There Yet???

What does a person taken by the men in white coats to a lunatic asylum for being a few slices short of a full loaf and a person who has an ASC/ADHD child with a passion for A380's and then takes that child on an A380 for a 24 hour flight have in common?  Correct.  They are both insane.  I am of course referring to myself in the latter example, although how I have escaped being the former remains a mystery to me.  Not that the lunacy ended there.  The option was there to not take the children.  We didn't take it.  Another tick on the Facebook Are You A Lunatic? Quiz with an affirmative. 

I can only imagine travelling with any young children is painful, the mere thought of sitting in a car traversing the length and breadth of the UK in a small car has me wincing.  But that is exactly when Ben Hatch did.  I am yet to read what exactly possessed him to do such a thing but I look forward to comparing our travel experiences and am assured by Terry Wogan it is 'utterly delightful'.  And Terry's word is good enough for me - oh how I miss him.  The joys of the Internet meant I got to listen to Terry's Radio 2 morning show in Australia whilst making tea.  Since he retired I rely on wine drinking to entertain me.  My lush-like state is entirely Terry's fault.  However, I digress.  Ben's book is called Are We Nearly There Yet?  8000 Misguided Miles Round Britain In A Vauxhall Astra.  For those of you down under, Vauxhall is what we know as Holden.  Ben not only travelled around in a very small car, but he did it with two very small children.

Taking any child on any kind of long journey requires careful planning and a serious head examination.  Entertainment needs to be factored in, not to mention enough food to feed an Army and plenty of incentives to curb any outbreak of violence between siblings.  When you add into the mix a child with additional issues, you invariably have to add in additional safety nets to deal with their extra requirements.  When you take a child with ADHD on a plane journey the safety net is of course ADHD meds.  But what to do when you want that child to sleep and the medication  keeps them awake and alert, (the whole point of the medication after all)?  You do as we did and fly without a parachute in the hope the excitement of being on an A380 will eventually wear off and sleep will reign supreme.  It didn't.  Resulting in Zebedee sitting beside me for 14. Long. Hours.  Another tick.  Why not just tick all the boxes and skip to the end and bring up a full flashing YOU A CRAZY PERSON results screen.

Whilst we could do nothing to curb the excitement caused by our mode of transport, Emirates were all too obliging to show us around the entire A380 finishing off with a trip to the cock-pit.  This may not have produced sleep-inducing hormones but it at least did curtail the curiosity of whether or not the plane was built as reported.    The other joy of decent airlines is that entertainment is un-ending.  If the choice of films didn't keep the boys occupied for several sleepless hours, the games did.  Emirates are also to be recommended for their child meals which include the usual foil wrapped delights but also, specifically for children, a snack box with lots of goodies in, to stave off the inevitable starvation that children so frequently suffer with minutes after eating a full meal.

If you find yourself travelling with a sensory seeking child, like us, you will know containing a child in the human equivalent of a tin can for several hours is like containing a jack-in-the-box.  In this regard I can highly recommend the travelators at airports.  We sat close to one in Dubai airport and made said child run up and down, up and down, up and down.  You get the picture.   

The reason for putting ourselves through this was obvious, they got to see family they had not seen in years and we got to give them a life experience travelling the World.  Well a bit of Europe but let's not get pedantic.  The trip was a partial work trip organised by Renault.  As part of my husband's job he gets to take part in Managers trips on occasion.  This year's experience saw us gadding around in the South of France sans enfants (crazy person reversal!) pretending to be A listers.  The experience was so authentic they even laid on paparazzi at Nice airport.  I'm sure the photos would have been much better if Eva Longoria hadn't stuck her beak in them but she was so small I'm sure they only photographed her enormous sunglasses whilst taking my picture.  Continuing in A lister mode whilst holding my award (ok glass of wine!) I would like to thank my Mother without whom none of this would have been possible.  I thank her to heaven and back for being game enough (again) to take my offspring for the entire time.

Our itinerary involved activities which were Aspie Man heaven, riding Harley Davidsons, driving Ferrari's, being passengers in vintage cars, sailing catamarans etc.  But I won't complain, for the women the bonus was that this was all taking place on the Cote D'Azur where we could indulge in our fantasy of pretending to be Grace Kelly.  That was of course not the real bonus of the trip, Sebastien the French chef was the real bonus.  Only kidding.  When these trips occur, for five whole days I get to be sane.  I don't have to deal with ASC meltdowns or demands and I can give my eyes a rest by not being on constant alert for hyperactive children.  I am allowed to turn my brain off, so to speak.  I also have the privilege of watching my husband relax and revert to the man I met many years ago who laughed and played the joker all the time.  Watching him flirt with the tour guide, as ironic as it may sound, was a highlight of this recent trip.  His stress is partly work related of course but there is no denying he finds walking into a mad house night after night a little testing and the strains of having a son with ASC and ADHD undoubtedly affects him too.

These trips naturally come to an end and I transform from Grace Kelly having her dinner served to her in Monte Carlo into Marge Simpson making the dinner in a very particular way for Bart.  The pain of the flight home becomes a reality and relatively pain-free travel through France and to various parts of England by car courtesy of Ritalin is consigned to a distant memory.  Next time I will be flying with my parachute, not that I plan to travel around Europe with my children again any time soon - the memories of the flight are still too raw... 

So back to Ben travelling around Great Britain in an Astra, the very least we can do is buy enough of his books (which are available on Amazon both sides of the Globe) to allow him to buy a Renault Espace for his next escapade.  Which given he owes me a favour he could combine with a trip down under and a follow up book called Are We Nearly There Yet Cobber?  Driving Around Australia With Two Children Under The Age Of Ten And A Kangaroo In A Renault Espace.  Just a thought Ben...!

The Ups And The Downs!

This blog has been in my thought process for quite a while now.  Somehow, the time and ability to do it has caught up with me and I can't think of a better time to start sharing with you than now.  As all parents know, life with kids is full of ups and downs.  When you're a parent of a child with Asperger's, those up's are way up high - the day they achieve something you've been told they will never achieve for example.  But the down's are so far down, if you've never been down there, trust me, you don't want to go.  But I'm going to focus on the up's as they've been pretty high up lately.  And whilst us parents know life in the 'Hidden Lane' is hard, some people new to our World may think of it as all doom and gloom, and we all need to remember the positives our children bring to our lives and the options their differabilities can offer them.
 
When you bump into Tony Attwood on a regular basis, as I do, you'd think the novelty would wear off, but it doesn't.  He quite literally is the Bono of the ASD World!  This week, I found myself standing with him alone and pretended to fumble for something in my bag as quite frankly I didn't know what to say to him or more to the point, I felt that anything I did say would make me sound like a delirious fan.  "Hey Tone, love your work!" would have had him looking at me like the crazy, mad, stalker parent that I feel I sometimes am.  And asking him if he's doing anything nice for the weekend would seem like a complete waste of words when I could ask him so much more.  So I chose to stay silent.  Recently he stopped to talk to Long Legs and have a chat with him about his toy plane.  I amazed myself by actually talking to him on this occasion, not just standing there like a blithering idiot, and I was genuinely touched by him taking the time to bend down and talk to Long Legs about his plane.  Then, a few days ago, the whole family had the pleasure of meeting Mark Webber, F1 Australian legend and a hero of Long Legs who, like a lot of Aspies has a transport passion.  He was an absolute gentleman, so kind to us all, particularly Long Legs and a more polite 'celebrity' I don't think you could ever wish to meet.

I was left pondering whether Long Legs would ever appreciate the enormity of both of these occasions in his life; it has taken him until recently to realise that Tony Attwood is not in fact Tony Abbot, opposition leader in Australia!; and whether he would ever realise that the research of one man over the past few decades has probably enabled him to seek and find the dream of being able to do the same work as the other man.  Of course, one man will never know the appreciation I feel for him because quite frankly I'm a pathetic excuse of a woman who can't string two words together when she is in his presence!  And Long Legs, well, he didn't display his appreciation for the other because he has Asperger's!

Despite throwing himself at me like a catapult when told we were going to meet Mark, then proceeding to deface an ordinary t-shirt and Renault F1 cap with indelible marker pen displaying his obvious adoration for Mark and his racing team, when the opportunity came around, Long Legs ran away the second Mark showed his face!  Being a true hero, Mark came across to him, bent down to shake his hand and say hello.  Long Legs managed to pull a few cheesie grins for the camera, belying his true feelings for the event.  But when it came time to leave, Long Legs threw a 'goodbye' over his shoulder to Mark much to the bemusement of me. 

This meeting gave me a renewed optimism that Long Leg's dreams of becoming a racing car driver are perhaps not as far-fetched as they could seem.  Firstly, having held the belief that drivers had to be fairly short to fit into a racing car, I was surprised to discover Mark Webber is actually really tall, much taller than I anticipated as my husband had told me he was as tall as him (which isn't very), having met him on a previous occasion.  Much to my amusement, he is in fact much taller than my husband but this bodes well for Long Legs who is on path to be a very tall boy. 

Secondly, the passion for transport and, in particular cars, means Long Legs will always have the drive and determination to succeed in whichever career path he chooses - well there's got to be some benefits to having Asperger's right?  And focus and determination along with perhaps some selfish, single-mindedness are all great ingredients for such a demanding career choice.  I read in an interview that Mark had chosen not to get married or have children (although he does have a long term partner) for this reason.   Given the latest research that Asperger's is more likely to be passed on genetically than previously thought, this is possibly a good thing.  Not that I would change a single cell of either of my children, I love them as they are, but let's not pretend being the parent of a child with a hidden disability is easy!  

However, this option is not within my control as Long Legs at the grand old age of 8 already has a penchant for all things female and blonde.  Catching him checking out 12 year old girls walking past with their parents is amusing but a little off-balancing.  I asked some other parents of 8 year olds if their sons were interested in girls too and I received a resounding no!  Interestingly, I had already told myself that one day, one of my sons could announce they were gay and living in this modern World where I have friends of all persuasions, I was determined for it not to be a big deal for either of them to tell me.  I guess, at least where Long Legs is concerned, this is no longer something I need to prepare for!

 
So now I suppose I should spend more time paying attention to Long Leg's passions as one day, depending on which passion takes precedence; all things blonde and cute or all things red and fast; I may have to get my head around the fact that I may never be a grandmother by him.  Or, rather more disturbingly, I could end up being a grandmother by him rather sooner than I would hope!