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    

April 18th 2015

  This morning there were two slightly tip-toe challenged 12-year-olds climbing the stairs to the X-Box at 6.30am!  At this point I thought how can they be awake after our late night of pizza and karting?  And then a thought occurred, YouTube was being put on.  YouTube is the bain of my life for one simple reason.  A few years ago when Long Legs discovered the joys of videos on YouTube, I discovered when he typed in Sponge-Bob videos, up popped a whole heap of videos which involved Sponge-Bob and Patrick doing unmentionables!  Not what he was searching for but offered to him on a plate none-the-less.  Ever since I have banned, blocked and restricted only to find out yesterday afternoon that the X-Box can also access YouTube and there was LL1 and LL2 watching a joke channel all their friends are watching and as I walked in to see what they were squawking at, out popped an expletive!

  Now I know all tweenagers hear these words and probably use these words when they are smart enough to know a parent, teacher, adult is not listening.  However, my ASD boy is not known for the practiced art of looking around to see who's listening before trying out these words.  Another reason why I avoid his exposure to expletives as much as possible is because it's easier for those with communication challenges to use 'easily processed words', phrases that come to mind without difficulty in the course of their communication attempts which can lead to inappropriate exchanges.  You may find you have a child who when you speak to them appears appear deaf.  You are probably asking them to do something which is either boring, unfamiliar or too complicated for their brains to process.  However, say 'would you like some chocolate?' and the response is instant.  Sound familiar?  Chocolate is familiar, desirable and the request is uncomplicated. 
 
  So whilst we obviously try to educate him about appropriate language and how social interactions can be affected by the language used, we also only try to expose him to the modelling we actually want him to copy.  Which does not involve 'Yo Mumma' or whatever it's called on YouTube.  Thankfully, 10 minutes later, the roar of F1 engines started up and I closed my eyes again.  I eventually got up to find a sight I imagine will become much more familiar as the years go on; two boys playing X-Box eating last night's cold pizza.  I then offered them birthday cake, as any good mother does, just to enhance their nutritional intake for the morning.  It was made with strawberry butter icing ok? LL1 had a minor meltdown when LL2 had to leave early to go and play his cricket match.  He left with a request to come back later and if it wasn't for the fact they both have to go back to school on Monday, I could guarantee we would have been in for another 4 day sleepover.

  Today the Short One had an OT appointment so I offered the husband the choice of taking him or doing 2 weeks worth of washing (it has been the school holidays!).  He opted for the latter option so I found myself having to re-phrase his choices into 'you are going to OT today, you have to be there by 11.'  It's not unusual for the mother to do all the therapy appointments, go to the workshops, read the books etc.  I know there are many Dads out there doing a great job too, so I by no means intend to offend or say that all Dads leave it to the Mums, but generally speaking amongst my friends who have children with ASD, it's the female of the species who tends to do the lion's share.  I know my husband is put off by the thought that he doesn't feel he knows what he's meant to be doing because I do attend these appointments 99.9% of the time due to the fact he works.  When the opportunity does present itself, however, in the form of a Saturday appointment, I won't deny not having to do it occasionally is good for my sanity as much as it is for him to actually to have a more active role.  As much as my husband respects my opinion, it is not unusual for me to tell him the way we have to do things and for him to question it or not quite get the point.  But have a therapist say exactly the same thing and it tends to register more.  I'm not offended.  I get exhausted and want to slam my head against the kitchen bench on occasion.  But I never get offended.

  The husband has been a child today and itched to make birthday Lego and go to the local theme park to play.  He got his wish for one, as I had a lunch with my Uni lecturer, so he got to go off and play at the water park.  The Short One was not impressed by my not taking him to OT and he was equally unimpressed as we played tag team when he got back from OT to receive a quick kiss from me as I walked out of the door.  I enjoyed my few hours of being an adult, I will not lie.  LL2 was due to come back to stay over after a day of cricket but apparently passed out on his sofa at home.  Needless to say, LL1 had a minor meltdown.  I honestly expected something more and I donned the steel knight's armour in readiness so was hugely relieved when he coped with his disappointment.  I must commend LL2's mother for her understanding of LL1 who told me she had even tried putting ice on LL2's face to wake him up because she knew how upset LL1 would be.  I cherish friends like her.  They really are one in a million.  I am super proud of my boy though for coping so well today with his two disappointments. 

  Now let's talk dosh.  Today the Short One's OT was $170 and then with petrol to and fro which was quite considerable as the OT is 40 minutes drive away plus the every day medications etc.  I think it's fair to say today cost us $185.  Til tomorrow x

April 17th 2015

  Today, I got jumped on, rather delicately I have to say, by my 12 year old birthday boy and I had a memory flashback!  That thing I couldn't remember was this; up until I can't quite remember, Long Legs would wake us up rather unceremoniously, usually at an ungodly hour, because he wanted to get up and he wouldn't go upstairs to watch tv on his own because he was too scared.  I really can't remember when it started but I realised last weekend we were being allowed to sleep in past 5.30am as he, in his elephant type manner, crept up the stairs to turn on the X-Box.  This at least allows one of us to get up, give him his meds and come back to bed.  Yes the noise of racing cars then screech above the bedroom ceiling, but we can cope with that if it means not having to get up til 8am.   
 
  Even as he popped into this world 12 years ago, he made it clear (with the benefit of hindsight) that he was on the spectrum for a variety of reasons.  One being his anxiety which was evident with the fact he refused to sleep unless next to me.  One not-so-kind midwife told me it was all my fault he refused to sleep without me.  Another much kinder and intuitive midwife was the one who told me to put him in my bed.  As she said, 'he's just spent 9 months with you and then all of a sudden he's expected to sleep in a plastic box away from you'.  Intuition then played a big part in the first few years of his life with plenty more medical professionals telling me, it was all my fault!

  I always referred to him as my Jekyll and Hyde child when I was traipsing around doctors and specialists in search of answers.  Today he is still Mr J&H but thankfully some characteristics are much improved, including his anxiety.  We started our day with a rapid present opening session before Dad had to go to work.  Opening presents so quickly used to over-stimulate him but today was calm and there was no road-runner impression.  His day pretty much started off in a hedonistic manner for him, bagels and cream cheese, an F1 Lego set to make and Top Gear on the tv.  Whilst anxiety still prevents him on occasion walking down the hallway to the loo on his own, he is spent his birthday afternoon doing what he loves the most; go-karting.  At full speed.  Not only does he not have any fear of going at speeds that really as a mother I should be more concerned about - but I'm not - he also craves going at speeds that are, quite frankly, bonkers!  It will come as no surprise that he has ambitions to be a racing driver when he grows up and with the passion that a child with ASD can display to enviable proportions, he has had a love of racing cars since he first saw Cars when he was 4.  He has finished his day in an equally heavenly manner, pizza and my attempt at a Bugatti logo cake...

  We had a small challenge today in the form of immediate gratification which is a common need in children with ASD.  Long Legs got a new skateboard and went to go out on it and give it a spin in his pj's and flip flops.  Now I didn't object to the pj's in public but the thought of toes, a concrete road and a skateboard going down a hill did not sound like a good plan.  So I asked him to pop on some socks and trainers.  Upstairs he bounced and said that he wasn't going out on it after all!  Very frustrating but not the end of the world.  But we had a triumph with his behaviour and his presents.  In previous years, he has been over-stimulated by presents which has led to constant requests for more.  Today, he was thrilled with his bounty and has had such a calm day.

  Now lets talk money!  Today's karting session was $48 and yes, it is a cost I associate with his condition and here's why.  Kids with ASD have a tendency for low self-esteem and a lack of confidence.  They also struggle with making friends or maintaining friendships.  So today's 'therapy' is to give him confidence by helping him get better at doing something he loves and build up his self-esteem.  Opportunities to build communication skills and socialisation abilities are more likely in an environment where there are other people and if their interests are the same, these opportunities are enhanced.  Watching others in a social setting and modelling their communication and social skills is a well known practice for helping kids with ASD build up their skills which are a core impairment in ASD.

  We want to take him more regularly before we commit to a mortgage-inducing proper kart but I will admit I struggled to justify doing it on a frequent basis with the amount it costs.  However, it costs the same amount as I was, until recently, paying for him to go to a private tutor to improve his maths.  So I asked myself is improving his socialisation skills, and lets not forget his gross motor skills, any less important that his ability to do fractions?  His gross motor skills are still something that needs improving which by coincidence, a young Ayrton Senna also struggled with once upon a time.  Yes I have used that fact many times, particularly to Long Legs when he started resisting going to the OT to improve his gross motor skills.  Due to various delays in getting him diagnosed and fully appreciating his characteristics, he didn't start going to occupational therapy until he was 9.  His resistance at this age goes to the heart of the importance of getting children diagnosed quicker and as soon as possible as positive outcomes are enhanced the sooner they start intervention.  Long Legs would probably have gone more willingly a year or two earlier but by 9, he was 'too old' for that sort of stuff.  His OT, like many others, discovered the uniqueness of my boy and his stubbornness!

  Obviously, the Short One went karting too.  Another $30.  Whilst he may not have the same passion as his brother, he has anxiety issues too.  I took him for his first solo kart session a few weeks ago and it was evident that he was benefiting from the experience for this very reason.  Having refused to do it because he doesn't like doing things he doesn't think he can do, he finished his first go and wanted to know when he could go on again and could they go any faster!  I will add they get their 'need for speed' from their father and not me.  Oh and then lets add in another $48 for his friend who I took along too.  Let's call him Long Legs 2 (LL2) who is just as tall and there's only a few weeks between them.  He was LL1's guardian angel a few years ago after a very wise teacher put them together so LL2 could peer-mentor LL1.  We realised how valuable peer-mentoring was as a strategy for assisting LL1 in a variety of ways such as modelling socially appropriate behaviour and helping him in class when his executive functioning was hindering him.  LL1 had such a successful year with LL2 as his buddy, we have used it ever since at school.  Even after LL2 stopped being his peer-buddy, they remained friends outside of school.  I used to feel sad that LL1 didn't have a whole gaggle of friends but I learned through my studies that having one or two really good friends has more proven benefit for children with ASD than lots of good acquaintances. So I will cherish the few he has and encourage their longevity which sometimes has funny consequences.  LL2 is staying over tonight and the last time he came for a sleep over he ended up staying for four days!   The Short One has never needed peer-mentoring (at this stage) which just goes to show how EVERY individual with ASD needs their own individual treatment plan based on their specific characteristics.   

  Back to the dosh, let's add in every day boring stuff medication, petrol to the kart track and stuff like that.  And today I have spent approximately $135.  Just imagine that figure multiplied by 365.  Phewy - $49,275!  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 :)

 

It Doesn't Have To Be This Way

http://www.huffingtonpost.com/2012/12/16/i-am-adam-lanzas-mother-mental-illness-conversation_n_2311009.html?fb_action_ids=10152344716430417&fb_action_types=og.likes&fb_source=timeline_og&action_object_map=%7B%2210152344716430417%22%3A276849515770818%7D&action_type_map=%7B%2210152344716430417%22%3A%22og.likes%22%7D&action_ref_map=%5B%5D

I had heard the young man who committed the Sandy Hook massacre had Asperger's.  The minute I saw the photograph of him as a teenager, I knew.  It is something that happens when you become a parent of a child with ASC yourself, you unveil a radar you never knew was inside.  My first thought was, 'Oh great, now they're going to have a field day laying the blame at the Asperger's door without looking deeper.'  In Australia at least, it hasn't been mentioned every time his name has been uttered as the killer of 20 children and 6 adults.  In the job that I do, and being the mother of children with many hidden disabilities between them is a very real job let me tell you, I have learned no child with any type of hidden condition just 'does'.  Their behaviour is the sign of an underlying message which we need to decipher to help them appropriately.  I understood this young man did not just wake up one morning and decide to go and kill his mother and then her school children. He did not just do it because he has Asperger's.  He needed help from a very young age to help him cope with his condition, be able to function in society.  Without that help he at best would be a socially awkward hermit, laughed at and ignored, hoping to end his days with as little attention as possible.  At worst, he would become what he did.  

I was very careful in telling Harry about the young man who had killed all those children the same age as his brother because I didn't want him to think that he was going to turn out the same way just because he has Asperger's too.  I try very hard to make him view his conditions as positively as I can.   What I did tell him was the reason I send him to all the therapies I do.  He recently had a stand off with his OT because he told her, arms crossed, that he could do everything she wanted him to do so he didn't need to come anymore and then proceeded to walk out of the therapy room.  Harry used to be very compliant with all his therapies, now he is older and much more self-conscious I know I am going to have trouble.  I asked the OT to talk science to Harry, infiltrate that clever brain of his and explain how OT therapy works and why Harry needed to go.  We talked neurons.  He got back to work.  And it is work, very hard work, especially when the OT is asking him to do things with his body that don't come naturally to him.  Imagine being an extremely unfit adult and being told to do 100 sit-ups followed by 100 press-ups.  Your body would be screaming at you after 10?  I imagine that is how Harry feels being asked to co-ordinate his body in ways he cannot yet do.  For my son's sake, I need to persevere with this course of therapy for a long time.  I often wish I knew five years ago what I know now.  But I am grateful I know at all.

When it came to explaining the reason this young man committed such an atrocity, I simply said to Harry this boy never got help.  So on days when he's had enough of his therapy session he can remember I want him to control his condition and not for it to control him.  The article I have attached made me cry as much as the news several days ago because without therapy my son would be a knife wielding 9 year old.  There are children all over the World who aren't getting the kind of help they need.  Either their parents are failing them or the authorities are.   I kicked several backsides to get my son a diagnosis, I offended people, people judged me as a neurotic mother.  I do not apologise.  I have recently had to do the same thing again for Elliot.  Again, I do not apologise.  With Harry, we could still be on the see-saw of 'it could be this, let's try this' and not on a very real treatment plan if I hadn't.  A mis-diagnosis a year prior to his Asperger's diagnosis saw him having a type of therapy that was very wrong for him and was a waste of a year.  Imagine if that had continued?  Because we understood why he got angry, I got him the right help to control this anger.  He now stops and thinks before he punches my walls or kicks me.  I have not been physically hurt on purpose since... I actually can't remember when the last time was.  A couple of years ago, it would have been a weekly occurrence or more. A couple of years ago I dreaded what the next few years would bring, when he would notice the knife I had sitting on the bread board next to me as he was taking his rage out on my body.  I no longer have to plan what I would do if he took a knife to me or worse, because I can now live with my son without fear. 

Andrew and I have spent nearly 18 months getting his medication right to control his chemistry.  Without it he does not function.  There is a very real lack of appreciation for how reliant on medication he is.  We tried taking him off his anti-psychotic this year because of fears over how many 'drugs' we were putting in his body and the nay-sayers telling us he would be reliant on them forever, taking him off when he is a teenager will be equivalent to taking him off heroin after years on it.  Cheerful stuff.  We lived with hell for months, it being suggested to us he was suffering drug withdrawal and would get better.  I eventually beat down the door of the GPs and begged for it back.  I asked the Paediatrician what was going on and he said simply, he needs it.  And so our philosophy when we agonise over what he is putting in his tiny little body, is just that.  He needs it.

Next year, we tackle sensory stimuli in the classroom.  As the article says, these children cannot cope in an overly sensory environment.  They are not being naughty.  They cannot cope.   We have learned a lot this year about what sets Harry off and what help he needs.  Medication can only do so much.  With a marvellous Inclusion Teacher, the support of the school Principal and the help of an OT who knows what she's talking about, I am very hopeful for the next school year.  

The Australian Government has yet again cut mental health funding going into 2013.  I can only access ten visits to see the psychologist next year down from sixteen.  My boy has been getting a lot of help for a few years now, we'll get by I am sure.  I feel for any parent with a newly diagnosed child who needs more therapy than they are going to be given.  Wishing all the politicians in the World the courage and foresight to take on mental health in 2013.  Wishing all the mothers and fathers out there who find themselves in the same position as Liza Long, the writer of the article, a calm Christmas and a peaceful New Year. 

Merry Christmas Everyone.
Lorna 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...!

To Resolve Or Not To Resolve, That Is The Question...?

A New Year, and for a lot of people, a chance to make a heap of resolutions that they probably will have broken by February!  I do not view making New Year resolutions a complete waste of time, I have made the odd New Year's resolution myself and have stuck with it.  Twenty-two years ago I gave up eating meat and have been a veggie-terrible to this day.  But neither do I reserve the New Year for setting new goals and making fresh starts.  As a mother of an ASC child, I find myself making resolutions all year round.  'I will stay calmer, even when my children are driving me up the wall, over the roof and back down again; I will find one-hundred and one new ways to make my children eat their chicken and veggies; I will stress less about the house work and spend more time with my children' etc.

One ever-popular New Year resolution to lose weight, exercise more and drink less I did in fact make back in October.  Yes, I know what you're thinking, but the gin was sacked and the tonic water promoted to position of my new BFF.  #amazeballs as they say!  As a consequence, my baby weight of six years is melting away.  As for the exercise, well, I don't want to go too crazy now do I?  Staying calmer is a daily challenge and consequently a daily resolution.  Some days I succeed, other days I ring my husband up wailing like a banshee to 'come home NOW!'  I know I am not alone.  The reason I know this is due to last year's resolution.

Last year's resolution was imposed by my mother.  I was to go out into the big wide World and make friends after a self-imposed exile of nearly two years.  Anyone who knows me, knows I am sociable and quite like a chat!  However, after a few bumpy episodes of people turning their back on me because of Harry and his ASC behaviours, I figured the safest course of action was just to not bother any more.  I won't lie, when these episodes happened, it hurt - a lot.  So when the family moved to Queensland just over two years ago, it was easy just to plod along with my own life bothering nobody, keeping the protective wrapping on.

For the sake of my youngest, Elliot, I did join a playgroup, which mercifully was an Autism playgroup.  Despite Elliot not having an ASC, I knew he would be able to play and make friends with other non-ASC siblings attending.  And I knew I would feel safe in the other parents' company.  Even when Elliot started school, I would still pop into playgroup to say hello, sometimes it would be my only conversations with adults, other than my husband, all week.  Eventually, being a good girl and doing as my Mummy told me, I took the Taurean bull in me by the horns and organised a coffee morning with the playgroup Mums and have not looked back since.  We are now all wailing banshees together, when the need arises, and occasionally drunken lushes!

Due to my inner-banshee, one resolution I have made especially for this New Year is to find more stress-less ways of doing things.  I mean, let's face it, parents in general have enough stress as it is but ASC parents have stress levels off the Richter scale.  The saying 'count to ten and breathe deeply' used to be 'count to ten and if you can't find a glass in time, just neck the gin from the bottle' in my house.  But given my gin hiatus, I need new tactics!  So if that means chicken and veggies disguised as a tin of spaghetti every night because it saves tea-time dramas, so be it.  With all the money I'm saving on my gin bill, I'm seriously considering hiring a cleaner every now and then, which in turn takes care of the house work stress/guilt. 

Now that I am back out in the World, a more serious resolution is to show more understanding and tolerance and to be less judgemental of people who struggle to understand ASC or who demonstrate a lack of comprehension for the life I lead.  There is nothing more soul destroying than a person responding to my explanation of some symptoms of ASC or ADHD with a 'but couldn't it just be...' or 'do you not think it's...'.   Belief that hidden disabilities are more controllable than we lead people to believe is just as infuriating as a person who listens to the description of what daily life is like when you have a child with ASC, but does not hear. 

Painful past experiences tend to make everyone 'once bitten, twice shy'.  In my case, it's been more a case of once bitten, twice mauled and three times chewed up and spat out.  Most encounters have been of a personal nature and I have persisted in the past trying to evoke some understanding in an attempt to maintain friendships and have, as a result, left myself open to further attack and rejection.  It really has been no wonder that I have worn a full suit of armour, wielding my sword at the first sign of battle for many years now and is something many, if not all, ASC parents I'm sure can relate to.  As such, you know my resolution is not necessarily going to be easy.  I will confess, in many cases the temptation to throttle is high.   

A friend of mine lead me to this quote by Ellen Notbohm.  'If you don't like something, change it.  If you can't change it, change the way you think about it.'  This year, I will continue to provide information about ASC and enlighten those who want to be enlightened.  For those who don't, I will try not to think less of them as people because of their inability or unwillingness to understand.  And in the event a person cannot take me and Harry into their life or can no longer keep us there, I will no longer take it personally and want to poke sticks in their eyes!  I will walk away singing 'Que Sera Sera'.  Obviously, this attitude is not merely due to a New Year but also down to the fact that becoming a serial murderer is not currently on my resolution list!  Therefore, I will have to keep all throttling in check and am going to have to find it deep within me to keep my tolerance levels high and continue to keep my alcohol to blood levels low.  Wish me luck!

What About Me?

Sibling arguments happen regardless of any neurological conditions amongst the children.  When a child is on the receiving end of their sibling's behaviour associated with an Autism Spectrum Condition which they do not comprehend, all out war erupts and mothers everywhere don their bikinis and high heels and walk around the kitchen with their 'Round 2' placards. Dividing attention between more than one child is not easy at the best of times.  When you have a child who needs more of a parent's time due to a disability, a sibling may feel jealous and resentful, especially when that disability is hidden and the sibling cannot 'see' why that child is getting treated differently.  Parents are faced with a difficult task, wondering how to handle a non-ASC child's needs so they don't ask in later years, what about me?  I am aware of these needs as, not only am I a mother of two boys, one of whom does not have Aspergers, I am also a sibling myself.  However, the situation I am in is very different to the one my Mother was in twenty odd years ago.
 
It can be quite startling when you realise that the diagnosis of your child with ASC is not necessarily the end of your search and find mission but occasionally it can be the beginning of many more.  When Harry was diagnosed two months before his sixth birthday it soon became abundantly clear he was not the first person in my family to have ASC but merely the first to be diagnosed.  Which is bizarre when you think that he was, at the time, the second youngest in my entire family.  A few months after his diagnosis, I attended my first Tony Attwood conference and during the course of the day my jaw dropped progressively closer to the floor as he 'diagnosed' several members of my family.  Whilst mopping up the dribble from my chin, for every comment he made, I popped the name of a member of my family next to it.  Just by the placing of one piece, a lifetime's puzzle suddenly made the family picture much clearer.

Whilst there had been obvious issues with my younger sister since she was very young, I was more than a little dumbfounded when the penny dropped that after years of referring to herself as 'mentally ill', Aelswith, was more than likely a fully paid up member of the Asperger's fan club too.  This discovery led to lots of feelings of guilt and also relief that I could now understand her, when for the best part of twenty years, I had not.  It also meant, as a mother, paying attention to the needs of my youngest son, Elliot, had to be pushed to high priority to help him cope with and understand being the brother of someone with Aspergers. 

Anger, frustration and sometimes violence are part and parcel of the negative symptoms associated with ASC.  When an ASC child is having a meltdown for whatever reason, a parent does not have the luxury of using Super Nanny methods of discipline, being sent to the naughty spot will result in the younger ASC child having no clue about what they are doing there and will proceed to headbutt walls and scream even more than they were before - I speak from experience.  Faced with the same situation with a non-ASC child, they would quite possibly be told to stop their unacceptable behaviour immediately, put to time out and be given a more severe consequence than their ASC sibling resulting in one very confused child.   A parent obviously understands why the rules of discipline have to be different, but the non-ASC child does not.  Siblings will see it as one rule for them and one rule for the other.

The same can be said for rewarding our children.  Every non-typical milestone an ASC child reaches is so huge we reward it with lavish attention.  A non-ASC child may feel resentful that their achievements are not rewarded as frequently or for seemingly minuscule efforts.  A non-ASC sibling will eventually become aware that family life and the attention they receive from their parents is all linked to their ASC sibling.  Outings are organised according to what the ASC child can cope with, parents attention at home may be focussed on the ASC child because of their needs at home, toys and possessions are ruined and all this time the non-ASC child is hiding around corners with a video camera recording evidence for the almighty tantrum that is waiting to explode Kevin style 'you all hate me, it's not fair'!   

It's easy to fall into the habit of making the ASC child's needs higher priority than their siblings and as parents we have to be conscious of this.  We may fall into a routine and adopt the attitude that our ASC child has no choice and needs us but our other children will be fine.  We may not necessarily realise what their needs are or we may simply not know how to help them.  Elliot, my youngest, has spent his entire life as the main target when Harry can't cope and up until recently, my focus has been on keeping him and Buzz Lightyear safe.  Recently, he has become more aware of the differences in his life to Harry and has been asking why he doesn't get the 'day off' like Harry?  And when I do have to take him with me to medical appointments, he wants to know why he's not going in too?   I am now very conscious of the change in his needs and how I can best help.

Talking to a non-ASC child is paramount, explaining age-appropriately about their ASC sibling is a necessity.  The more information they have to able to understand their sibling will benefit them as they grow older.  They need to understand that their sibling gets so much attention because of their condition, not because they are any more loved.  They need to understand ASC makes their sibling want to attack them for touching one of their toys but will happily chop off the head of their favourite teddy for no apparent reason.  We must be seen to understand their upset at this and not dismiss their feelings. 

We may find adopting the same discipline methods makes as much sense for the non-ASC child as it does their ASC sibling and will lead to less feelings of resentment.  Similarly we need to make the number of opportunities for reward the same for all children, but explaining to the non-ASC child that all children have different capabilities and, therefore, reasons for rewards are individual. Whilst we will always ensure our ASC child's needs are met, they do not always have to be met by both or either of the parents.  On occasions we have to allow for our non-ASC child to feel special, we may have to create these opportunities and we most certainly must allow for it  during moments of great importance in their life.  

The problem with family days out are that quite often, the day will be determined by the ASC child, and eventually the non-ASC child will get fed up with playing second fiddle.  Of course, a child's needs can be met and factored into a day if you know what those needs are likely to be in the first place.  But it often works in families with more than one child to divide and conquer.  Recently Harry got to spend all day with my husband Andrew at the Gold Coast 600 watching cars go round and round a track!  I meanwhile, thinking I had got the better deal, spent all day at Seaworld with Elliot letting him feel special by choosing everything we did, he was ecstatic.  So we started off looking at penguins. Then later we went to look at the penguins.  After that we went to see the penguins.  Next day when I took the two big boys back to the race track Elliot threw a massive hissy fit when he found out we weren't going back to Seaworld!  'Yeah, not gonna happen.  Special time's over babe, Mummy's hitting the beach with a book'!  I of course read two pages as my time was spent stopping Japanese tourists from running off with him for their photo shoots.  Note to all Japanese tourists, kidnapping is not the way to make a non-ASC child feel special!

Younger children simply don't want to feel left out.  Watching Harry have his medicine is seen by Elliot as Harry getting more attention and doing something special with Andrew or me.  Ironically, Harry hates taking his medicine and calls us all the names under the sun and thinks we have a vendetta against him because Elliot doesn't have to take it.   By including some strawberry flavour to some milk at night so that Elliot gets to take his 'medicine' has made him feel included.  Mummy likes to make it a family occasion and has her medicine in a glass with lemon and ice, with a double shot of medicine for those days when Harry tells me 'he knows I wish he was never born'!

Recent changes to medical rebates for those on the Mental Health Care Plan in Australia have resulted in the amount of psychologist sessions allowed per year being dropped from eighteen to ten.  Which is ridiculous when you consider Aspergers is most likely to be diagnosed after the age of five and the Autism funding available in Australia cuts off at the age of six.  Also taking into account, psychology is probably the most beneficial therapy for those with Asperger's, without it, I would be sitting in a corner singing happy clappy songs.  Which brings me to a way to combat the reduction of psychologist sessions.  Parents themselves can be referred under the Mental Health Care Plan, and quite frankly some of us need to be!  This way there will be a total of twenty sessions available which means the child with ASC gets as many sessions as before and gives parents the option to use some for a sibling.  Non-ASC siblings need to feel they are not alone and may need a professional to talk to them about how it feels to be the sibling of someone with ASC.  This will then combat the issue I have with Elliot seeing these appointments as 'days off' for Harry and he will get to have them too. 

Elliot will of course benefit from the fact that we actually have a reason for Harry's behaviour and, in time, we will be able to explain this to him, as like me, he cannot see his sibling's disability.  I know I talked last time about differabilities and being positive about Autism Spectrum Conditions, but when a person's condition affects their life and the lives of the rest of the family, with there being no explanation or useful help available, on this occasion it is fair to say it is disability.  Obviously, helping a sibling understand and cope, can be helped greatly if the parents themselves actually know what they are dealing with. 
 
The old saying 'if we knew then what we know now', I know is used by my parents, my elder sister and myself.  When real problems first surfaced with Aelswith, my physically disabled Grandmother had just moved in with my parents following a near fatal car accident and my Father was running a small business from home.  I honestly don't know how my Mum did not end up in Betty Ford, knowing what I know now about having a child with high needs, never mind the rest of what she had to deal with.  My Mum, I know, feels guilty about what she 'didn't' do to find out about Aelswith's condition.  I honestly don't know where she could have turned back in the early 90's with Asperger's only being on the verge of being a recognised medical condition, there was no internet and professionals  clearly had no idea and simply wanted to label her with an eating disorder, the disorder of the 90's.  We all knew what she wasn't i.e. anorexic or bulimic.  Yes she had ribs that stuck out and hip bones poking you in the eye but she was also very tall with legs up to her armpits that were slim but certainly not skeletal.  And yes we called her lots of names for having those legs.  She also ate crisps and chocolate for breakfast and her love of toilets was not due to her wanting to stick her head down one!  But unable to tell us what she was, she was stuffed full of prozac to help her panic attacks and sent on her way. 
 
I imagine it's difficult to be understanding all the time even when a sibling does have a diagnosis.  But when there is no diagnosis, the problems that creates in a family are phenomenal.  There were many occasions when I could have happily throttled my sister.  I was, at the time, an older teenager myself and fairly level headed for my age but I could not cope with the demands my sister made on my Mum, in particular, and the way the whole family life seemed to revolve around her.  At the time I was of course clueless about how debilitating it was for her and how powerless my Mum must have felt trying to help her.  In her teenage years Aelswith's anxiety and need for routine led to her not going anywhere unless she knew where every single toilet was.  My Mum literally had to plot her route to walk down to the town and go via every single public convenience so that Aelswith would leave the house.  And if she had to go home, she had to go home now or she would have a panic attack.  To get Aelswith out of the house and into a car my elder sister, Eadwina, and I thought we were helping by suggesting we took a bucket in the boot of the car!  On the occasions when we did get her in the car, it became a running joke to let her know 'we've got the bucket'! 

Anxiety has ruled Aelswith's life but where I once thought she was being selfish, I can now understand some of how she feels as Harry is so much like her.  But I will call her selfish when it comes to her career.   She enrolled on a music course at the Academy of Contemporary Music in Guildford where her classmate was one Newton Faulkner.  She loved every minute of this course but crippled by stage fright, after she qualified she became a vocal coach whilst Newton apparently went on to sell a couple of records...  First I miss my chance of going to the Oscars, now because of my sister, I miss out on the MTV awards! 

Aelswith is still fighting to have an official assessment, having been told at the grand old age of 33, what does she need to know now for?  Clearly psychologists aren't qualified to help anyone over the age of 20!  Whilst Aelswith will always be the annoying little sister with habits I may now understand but which still drive me bonkers, doesn't she deserve the right to know what she's dealing with?  Yes, it's too late for early intervention or for her family to have understood her when she was growing up.  But doesn't she deserve for us, and others, to understand her now?  In the meantime, however, Aelswith is available for weddings, funerals and parties.  Please send your booking requests along with a detailed map of all the toilets in the area.  Eadwina and I will provide the bucket!

What's In A Word?

I was once challenged by a mother over my use of the word 'autistic'.  This mother, who had a child with Autism, questioned me over the appropriateness of calling a child autistic.  Her enquiry was barbed enough to let me know that she was not actually asking me my opinion, but in fact letting me know hers.  Which was just as well because I was so stunned by the confrontation, I couldn't reply.  I was informed that to call a child autistic is to define them as autistic first, child second.  Whereas she would prefer it if they were referred to as children who have autism.  I took her point, it was valid enough and I very rarely, if ever, use the word 'autistic' these days.  And I certainly didn't dare utter the word in front of her again!

Having a child on the Autism Spectrum is all-consuming and every one of us in this position understands the gambit of daily battles we all endure.  Amongst which is the abuse we receive from unwitting members of the public who feel they are doing a public duty to inform us our child clearly needs some discipline because of their behaviour out in public.  So the onslaught from a Mum who knew I had a child who had literally just been diagnosed with Aspergers and who should have known I was still finding my feet in this new World I was entering, was confidence shattering.  Whilst I don't expect to get on with a person just because we both have children on the Autism Spectrum, I did expect, as naive as it may sound now, we would all have empathy for one another.  I certainly did not expect us to attack one another over the words we use to describe our children, especially when we face regular unkindness from others.  How wrong I was.

Recently, I have seen a lot of discussions on Asperger websites over the word 'Aspie' and whether or not it is an offensive term.  Presumably, some take exception to the word 'Aspie' for the same reasons as they would to the word 'autistic'.  The unleashing of vitriolic comments on others who use the word 'Aspie' leaves me bewildered.  Others, find the word less medical sounding and use it in an affectionate way to describe their child's condition.  I can see older children using the word 'Aspie' to describe themselves, helping them relate and connect with others, without being ashamed of it.  Teenage children who are capable of making the word 'sick' not refer to vomit but something that is cool, I'm quite sure can change the interpretation of the term 'Aspie' into something they consider awesome!  'S'up man, heard you're an Aspie' - 'Yeah, what ofs Dude?' - 'That's totally sick bro'!  And no, I have absolutely no idea what the youth of today are talking about half the time either.


Using the above as an example, it seems to me the problem with certain words is not the words themselves, but the fact that they refer to our children having Autism or Aspergers.  Whilst we, as parents, want others to realise being on the Autism Spectrum is a very real condition with very real symptoms, we worry, quite rightly most of the time, that people will view this condition wholly negatively.  We try to push the existence of their condition into the background, so that others don't see them as less able.  Tony Attwood refers to the 'disabilities' of our children as 'differabilities' which is totally accurate.  For every typically developing trait they don't display, they have the ability to do something their typically developing peers don't.  How many four year olds do you know who can read and spell despite still developing language skills?  How many five year olds do you know who copy a painting so precisely you'd think it was an original but who have the inability to write?  Harry has such an eye for attention to detail that since the age of four he has been making model planes with little more than a few lollipop sticks, cut out pieces of paper and sticky tape (and then, of course, has had to make them for the rest of his class).  But his ability to walk away from me into the class is still something, at the age of eight, he severly struggles with.

Having a passionate belief about something is not to be knocked, apathy is a total waste of a life, but if that passion is over the dislike of the use of the word 'autistic' or 'Aspie' consider this; as opposed to pistols at dawn every time someone says one of these words, could our energies be better spent raising awareness of the Autism Spectrum itself?  More specifically, instead of denying our child's condition, could we use our time better reinforcing the positive attributes of having a child on the spectrum?  We need to tell our children every day 'you can do this because you have Aspergers or Autism'.  If we teach our children their condition is not a weakness but something to be proud of, then the scenario of it being considered 'sick' to be an Aspie may not be as far-fetched as you may think  If we empower them, they will be the ones to create this shift in attitude we all seek.   

Of course, a little star power will do wonders too which brings me onto this past weekend's article in U On Sunday  magazine featuring Kate Winslet.  Suzanne Wagmann, herself a mother of a son with Autism, (who uses the word 'autistic' at least four times), interviews Kate who has recently set up a foundation for raising awareness of Autism, called the Golden Hat Foundation.  In 2009, Kate was asked by Cherie Blair (wife of former British Prime Minister, Tony Blair) to do the voice-over for an Icelandic documentary called A Mother's Courage: Talking Back To Autism.  I have long been an admirer of Kate's acting abilities and her refusal to conform to the size zero club of LA, whilst actually being the epitome of Hollywood glamour, so am delighted with her involvement.

I do, however, have one gripe against Ms Winslet.  You may remember a little film she did back towards the beginning of her career called Titanic in which, coincidentally, my cousin was also cast opposite Kate in the sinking scenes (sorry to ruin the ending of the film for you if you haven't seen it)!  Due to Kate presumably fluffing her lines or what-have-you, the film ran behind schedule and over budget and something had to give.  That 'something' was my cousin's part which ended up being scrapped.  Why would I be upset about this you ask?  Well you see my cousin at this point was unmarried and upon hearing about his role in Titanic I had already chosen my Oscar's frock to accompany him as his date!  As you can imagine, I was gutted.  I'm sure my cousin was a little disappointed too but I'm sure he is now grateful not to be a big Hollywood star given that he is now happily married and we all know how Hollywood marriages end up!

However, Kate does redeem herself in my eyes a little as I love the fact that she has become involved with raising awareness of Autism, not because she has found herself as the mother of a child on the Autism Spectrum, but simply because she can and wants to.  In addition to setting up her foundation, she has helped produce a book called The Golden Hat: Talking Back To Autism which features the likes of George Clooney and Justin Timberlake and will be released in April 2012 with all proceeds going to the Golden Hat Foundation.

But Ms Winslet if you are reading this, to fully restore my admiration for you, I expect a phone call from George Clooney inviting me to be his date at next year's Oscars!  In the meantime, please let's all be kinder and don't attack each other for using the term 'Aspie' or 'Autistic'.  There's enough negativity in this World and I, for one, do not have room for any more.  There is only room in my life for tolerance, love and gin!   (And I will of course find the room in my schedule for my date with George next year...)!

Thinking, Fighting and Being Angelina Jolie!

Most parents with ASD children will tell you that what they do most is think.  You will hear the cry around the World from any ASD parent, 'I'm so tired of thinking all the time'!  And we're not just talking about thinking what to have for dinner, or did I remember to pack the children's library books.  Looking after an ASD child involves strategic planning, every second of every hour of every day.  If MI6 ever want to replace Judi Dench or NATO need a new Head of Defence, they need to find an ASD parent.  More often than not this will be the Mum.  Apart from running a diary in our heads scheduling medical appointments and therapy sessions which occur on a regular basis, we plan our children's day with military precision.  Tactics are plotted to ensure we are ready to outwit our child's every move.  We must be prepared for all eventualities and have an escape route at all times.  Because if we get it wrong, at best, there will be a mild explosion of some sort.  At worst, any famous historic battle would look like a Scoody Doo cartoon by comparison. 

Second to the thinking is the fighting.  We have our battles with our children the same as other parents, although our arguments are carefully worded and calmly delivered as prescribed by our psychologists!  What our battles are about can also be different.  I personally have a daily struggle getting Harry to take his medicine.  The scene in our house every morning is akin to a hostage situation with me gently coaxing him to take one more sip, whilst remaining firm that I will not give in to his demands for a helicopter to a tropical island, a 12 year old blonde and to let him off his medicine.  Every second is a tense one until the cup has been drained, knowing one false move on my part could end disastrously.  We used to mix his medicine into Milo (a chocolate drink).  On one occasion when I detonated the bomb, my living room and brand new carpet were redecorated and, therefore, Milo is no more!   

Disputes with our partners are a regular theme I hear spoken about amongst my friends, usually when the Mum is bearing the brunt of the responsibility and needs a little back-up.  Not that I want Dads to think I am picking on them here, this is all based on my research, honest.  And who hasn't had a battle with a medical professional, a school, a teacher, a politician or saddest of all, another parent?  All in all, it's very exhausting and I, for one, have gin on an IV after the children have gone to bed!

Despite teaching our children to walk away from a fight, this is not often an option in our situation.   If our battle involves getting the right educational support for our child or best medical assistance, we would be failing our children to accept anything less than they deserve and need.  When it comes to a fallout with another parent, the decision on whether to walk away or not can be a hard one if the other parent is a friend.  We want other parents to understand our child but there has to be willingness to want to understand.  Therefore, we adopt the role of peace envoy, trying to find a peaceful resolution to a situation.  Again, if the UN want a new peace ambassador they know where to look - move over Angelina Jolie, you're so last year!

Consequently, looking after ourselves is so important when we lead the lives we do, but how do we do it?  Personally, writing for me is my escape, although ironically it's on the topic of my ASD child.  I also find getting back to nature helps, by that I do not mean I streak around the garden naked calling all the wild animals to come hither!  I like to potter in the garden, growing veggies and looking after our chicken who clearly thinks we are running a luxury retirement home for chickens, and so doesn't lay eggs any more!  The sooner we get some new ones who show the old girl how it's done, the better.  In the meantime, she does fulfil a purpose as Long Legs' stress relief.  I shouldn't complain about her lack of egg production as providing ASD children with a form of stress relief is vital.  They are very easily frustrated and their stress levels are usually very high.  Up until recently Long Legs' mode of stress release was to thrown furniture and put his feet through walls, which sounds worse than it is if you take into account houses in Australia are made with paper mache!

So back to this chicken, using the chicken to relieve Long Legs' stress is normally fine, expect when he ignores my instructions to not get the chicken out for a cuddle in school uniform.  Nothing more likely to test the 'at all times you must try to stay calm with your ASD child', than said child appearing before you covered in chicken poop ten minutes before school!  At these times, if I wasn't a vegetarian, I'm sure I could find some useful ways to expel my stress using the chicken too!  But as this is not an option, perhaps the idea of running around naked in my garden calling all the wild animals to come hither is not a bad one after all...

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!