21st May - Leaking Eyes

Don't you just hate those moments when completely unexpectedly, your eyes start to leak.  Something randomly touches a nerve and you well up.  Well I had one of those moments this morning.  I will add that I'm not feeling particularly emotional at the moment, life is actually pretty cruisey.  Now when I say cruisey, we have our episodes on a frequent basis, which you'll know if you read these blogs daily.  No, what I mean is the repeat button is not being held down and I do not currently feel like my head is on a full spin cycle.

My mornings not consisting of the same battles has enabled me to put my fishwife costume back in the box.  Dare I say it, but I probably have stress levels at an all time low and I'm actually enjoying my children.  That may sound horrible but as any parent with a child who has demands above and beyond the already high demands of a child probably knows, we love our kids to the moon and back but their daily challenges don't leave much room for us to just enjoy them being kids.  I am getting to do that at the moment probably for the first time that I can remember.  Long Legs actually talks to me in audible words and not just grunts!

Today I went to the Short One's school assembly.  I used to be a weekly attender but this year I've just not felt so inclined.  So today I went and much to his delight I actually stayed for the whole thing.  I normally bolt before the class presentation at the end.  This morning the presentation was by the senior class which Long Legs was in last year so I thought I'd stay and see what they were doing this year.

It turned out to be a mini play/musical with the theme of bullying.  They introduced by explaining bullying can be verbal, physical, it can be a group of kids or it can be hidden.  The play started out with the main character having no friends and nobody would even talk to him.  He was called weird by all the other kids and the eyes without warning sprung a leak! 

No amount of looking up the ceiling to inspect for cobwebs was stopping it so I just went with it and dabbed the eyes to stop the mascara running.  I wished this presentation had been done the year before.  My boy last year in senior, and probably all the years before that, just wanted to be liked, just wanted to have friends.  He had a couple but the majority of children at primary probably just thought of him as nobody worth bothering with.  Weird.

So that raw nerve we all have, got stung.  Aside from the fact that we have had an issue with Long Legs being called names at his new school, I realised I was crying because I just wondered how much of this mini play was actually sinking in to these kids?  How much did they realise that their behaviour and actions do matter?  And I wondered, for all the talk of bullying being subtle and how much mental anguish it can cause, how much do teachers practise what they preach?

I was disappointed in the ending which was five other kids beating the main character up and I just thought, yep, all people are going to really take from this is that bullying has to be physical. It has to be extreme and seen before something is really done about it.  Isn't that the epitome of ASD?  People can't see it, they can't see the effects of having a brain work differently, so it's just not real.  They can't see how other kids treat your child differently because of it and they can't see how that makes a child feel.  Therefore, that subtle bullying carries on.

So meanwhile, Nigella has a chocolate cake recipe which I have promised to make the boys.  I feel a large slice of comfort cake coming on for myself.  Failing that, somebody send me a wet fish so I can slap myself out of this state I now find myself in.  Til tomorrow x    

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

Somewhere Over The Rainbow...

So some of you may (or most likely not!) have noticed I've been very quiet this year. There is a reason for this.  My Jo went awol and my Mo couldn't cope without her. Upon reflection I've realised just as I thought I'd overcome one major test of endurance involving either one or both of my children, slightly bruised but undefeated, there was another one poking it's nose around a corner trying to hide from me until it chose the right moment to jump out and say Boo! I climbed that mountain slowly but surely reaching the top and sucking in that fresh air for dear life and each time thought righto! I can start my descent now and carry on.  I honestly thought I was up there for longer breathing in that pure air but in fact, I actually didn't have much more than a few seconds. I now know I started to climb back down to solid ground but no sooner had I started, up popped several peaks in front of me. 

I've been a mountaineer for over six years now and I never realised before just how long I've had my backpack continuously on. And as anyone will surely appreciate, all this mountain climbing is bloody exhausting!  No one mountain has been the same. The climbs are usually because of a child or on behalf of a child, but a new one took me by surprise this year, one involving me. My view of things such as 'we've overcome the anxiety episode' or 'the sensory overload months' was skewing with my perception of things. I honestly thought things were going good and I couldn't understand what my problem was until a few months ago when I lost the plot. Big style.  Then a ping went off above my head.

Things this year haven't been peachy, they have been better than last year or the year before, but they were undoubtedly made so much worse because I was well and truly out of puff. Only I didn't know it. However, the mind gremlins did and in the relative calm, spying an easy target, they joined forces with the body police who decided 'grab her now boys whilst she's not looking!' The oxygen tank was pulled out at the first chance it's had to really pump some air back into my deflated body in years and I was thrown into a little cave where it was really dark and I hid with my Mo but no Jo.

Luckily with the aide of my light-bulb I didn't just sit there, I became a fan of all things Chinese; medicinally and proverbally (is that a word??). My son's new psychologist (who is Chinese) gave me a great Chinese proverb 'A rest allows us to travel further'. Doesn't that make so much sense? But how many of us do it? I know I haven't been doing it but if I keep slogging up those mountains without putting up a tent more than once a year, it is inevitable that I will just slide down those icy outcrops on my butt, too tired to grab a passing rock and put up a fight.

It is only now I have climbed this peak singing Valder-ree Valder-raa completely out of tune that I can stand at the top of yet another summit with the sun shining down on my head, naturally beaming a light onto my head allowing me to see clearly - light-bulb you are dismissed. I have learnt you can't go hiking without provisions and if you go summit climbing, you can't do much else.  I have joined a gym giving me the muscles to climb these sodding rock faces and the mental space to just be.  I've also recently done the Triple P Parenting Course for parents of children with special needs and I have a bag full of new strategies helping me up these hills. By golly it works! 

It also encourages positive parenting which involves spending a lot of quality time with your children, something I have not been doing fearing the World will end – I suspected an explosion of a Clothes Volcano created in my house being the ultimate Armageddon. So I send the washing down to base camp where the husband dutifully irons on a Sunday afternoon after we have spent the day together.  It allows me time to be with the boys after school instead of trying to do everything before the weekend.  Of course nothing is as simple as doing more for yourself and less for others.  You will feel guilt.  So I take comfort from the fact we as a family are having the best time and because Jo has returned to Mumma and Mo, I am able to appreciate how truly awesome my boys are.  

I've really only been stopping for tea-breaks though and am yet to decide where to have my first official camp out - guilt is preventing me booking a night away or even an afternoon - but I'll get there.  Honest!  But indulge me if you will, come and meet me up the mountain.  I can't promise a pot of gold at the end of the rainbow and the skies may not be blue afterwards but bring a sleeping bag and we'll lay for a while to look at the rainbow the storm has created.  Imagine it now, aren't the colours pretty?

Authors note: No Chinese Prozac were hurt in the making of this post :)

 

Münchhausen Mumma!

Now there is a vicious rumour that I'm a little bit partial to the crazy biscuits.  Ok, it's less rumour, more fact but let's stick to the point.  As with most things in life, there is a time and a place for things and when it comes to my children, my marbles are well and truly lined up and ready to roll.  I am an intelligent woman with bone fide initials after my name and everything!  People who have only met me post-children are surprised to hear this as I no longer work in the area I studied long and hard for.  The presumption being if you are a stay-at-home mum, as I now am, you aren't capable of much else and to put it harshly, you are brainless.  This presumption doesn't bother me so much, it's the fact that as 'just' a Mother you aren't taken very seriously.  As we all know, when it comes to our children with hidden disabilities we struggle as it is to be heard.  When you try telling somebody, anybody, that there is something going on with your child, with no credentials to back you up (the several years mothering qualifications you possess are not worth the gin receipts they are written on), you just as well sign yourself up to the Münchhausen Mumma's Club.

I was dubbed a Münchhausen mother with my eldest son for quite a few years, and still to this day there are very few people who get just how much his conditions really affect him.  Back in the early days, I didn't really know what I was doing and I didn't have the knowledge to prove that I knew what I was talking about.  Relationships with professionals and friends suffered as a result.  To others I was dog in a human body, clearly barking.  It took over two years and two assessments for him to be diagnosed with Aspergers, longer for ADHD, three years to be told he had a severe language delay and he was only diagnosed with Sensory Processing Disorder and auditory processing problems earlier this year. 

At the end of last year I started asking questions about my youngest son.  The plus side of having been there, done that, got the gin subscription is you know which section of the library to head to when your inner Sherlock rears his head.  You know which professionals to approach and you know, your instincts having been proved right once already, you are not prepared to be labelled a Münchhausen Mumma for a second time.  Sadly, in the absence of a visual difference, the signs that there is something else going on are not obvious to some people and, therefore, the problem is in the head of the mother.

Interestingly the rate of Münchhausen's is 2 children out of 100,000 have a mother making up their conditions for attention.  Which given 1 in 10 school-aged children have an ADHD diagnosis and 1 in 4 boys have an ASC diagnosis, begs the question - why is it presumed the mother has Münchhausen's before it being considered that she might just have a very real problem occurring?    We don't hear someone saying when we complain of a headache that we need to get to hospital quick because we're obviously suffering from an aneurysm do we?

The bonus of having a child already diagnosed with these conditions is that you are likely to be taken more seriously, the gene factor carrying kudos over the loopy factor.   But that's not to say you remain completely unscathed.  Whilst many people were prepared to listen to me this time around, a few still rolled their eyes.    God bless my marvellous paediatrician who saw my son almost immediately and started the process of elimination.

Of course, if you'd asked me a year ago did my son have any obvious signs of the conditions his brother had been diagnosed with, I would have said no.  The problem with having a child already diagnosed with hidden conditions, I have discovered, is that you are alert to similarities cropping up in your other children and if the same symptoms don't arise, you think you're home and clear.  Just to add to the confusion, a few similar behaviours may be presumed to have been learnt or a coincidence.  So the ignorance continues.  The first six years of my sons' existences were as similar as the lives led by a nun and a prostitute.  Son with the long legs is hyper, obsessed with transport, very easily angered, runs like a whippet, clever in his areas of knowledge (OMG if anyone wants to know anything about the Olympics I have your boy), hates red capsicum, loves peas.  The short one is not hyper except verbally, wouldn't give you tuppence for a Thomas train set, placid but emotional, runs like his mother (trust me, it's not pretty), very intelligent, loves capsicum, hates peas!

As suspected, (give myself an honourary doctorate in mothering!) a few weeks ago I went from being the mother of one child with ADHD, Sensory Processing Disorder, anxiety, language delays and co-ordination difficulties to the mother of two.  Whilst we hold the theoretical knowledge that these conditions affect children differently,  seeing just how differently they can affect siblings has been a real learning curve for me.  One son has the hyperactive form of ADHD, the other the inattentive type.  It doesn't mean one child doesn't have ADHD, it just means his symptoms are different.  This applies as much to siblings as it does to children in general.  How many times have you heard 'oh well he doesn't do that, so he can't be' or 'but she can do this and kids with XYZ can't do that'.  Cue more Münchhausen Mumma subscriptions.

Thankfully, the process this time has taken several months as opposed to several years and the short one is receiving early intervention which we know is so crucial when they are young.  The point of all this is, of course, to tell any mother out there working on pure gut instinct to trust themselves and release that inner Sherlock!   If it helps to dream of Robert Downey Jnr a little then so be it.  Sure we sometimes get it wrong (but only a little bit) and not everybody out there is determined to label all Mothers as in need of a lobotomy.  But remember the odds are in your favour.

Oh and in case you were wondering, my re-subscription to the Münchhausen Mumma's Club has been refused.  Apparently to join you have to be more mentally unstable and less physically unstable due to the effects of alcohol...

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!