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

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...!

I've Got The MoooOOOooooves Like Newton!

 I've been feeling a little bit like Bert Newton lately.  No, not a 70 year old, dodgy toupe wearing comedian with jokes that Bruce Forsyth would be embarrassed to tell.  No, I'm referring to Bert Newton the parent.  Bert must be waking up every day at the moment and dreading turning on the TV to see what escapades his son has been arrested for that day the same as I dread turning up to school to pick up Harry not knowing whether he has got through the day incident free.

Whilst Bert has an adult son and his incidents involve being arrested several times a day for being a bit loose with his fists, Harry is of course only just nine and no Police have been involved - yet!  He is merely dabbling with getting as many school detentions as is physically possible in the space of a few hours but nevertheless, Bert's son Matthew is clearly a very sick man whose illness affects his behaviour as Harry is a child with several conditions which affect his behaviour, for which they are punished and which as a parent renders you pretty useless. 

Whilst Harry's first diagnosis was for Asperger's, he also has co-morbid ADHD, as do many ASC children.  Sadly, many people believe ADHD to be a made up condition, an excuse for bad parenting, poor diet and a lack of discipline.  As with all of our children's disabilities, they are hidden.  Therefore, any empathy or attempt at understanding is limited and quite frankly the media don't help.  Well let me tell any sceptics, it is a very real and very debilitating disability.  Harry's attention span so far this year has totalled ten minutes.  All day.  

This latest foray in the world of school detentions has been a new one for him.  He has up until this year been the epitome of a child who holds it in all day and then lets it all out in the safety of his own home where Mum will still love him even when he's screaming that he hates her and wants a new Mum!  A child with ASC and/or ADHD going through a continual cycle of detentions then suspension is, however, not new.  Unfortunately, it appears to be the norm.  These children face every day with so many more opportunities to fail or perform unacceptably.  They receive countless detentions, are labelled the naughty kid and self-esteem plummets to the point where they give up.  I have read countless autobiographies and heard first hand accounts of children on this interminable path.  My most recent encounter was reading Kathy Lette's new novel The Boy Who Fell To Earth, which is a work of fiction based on Kathy's first hand experience of having a son on the Spectrum and who clearly went through years of school hell.  I honestly never thought I would be telling the same tale.

It would be fair to say it has been a very stressful time over the past few months but conscious of taking care of myself during this period I have looked after my diet and ensured my fruit intake has been maintained.  Lots of lovely grapes, which I have preferred in their squeezed and fermented state, but they have been grapes nonetheless.  And iron and carbohydrates for energy have been very generously provided in a lovely little slab of dark stuff.  But there is only so much healthy eating a girl can do, so it was time to tackle the ADHD monster head on and the sword of choice has been Ritalin - try not to shiver as you read that.  This tiny little pill has turned things around immediately for my child.  His teacher has proclaimed that someone has come along and pressed the re-set button on him and it's all systems go.

Parents really do have the nastiest battle on their hands when it comes to the 'to medicate or not, that is the question' debate.  I naturally did copious amounts of research.  I avoided all the scare-mongering websites that you find these days and stuck to science.  The medications provided for ADHD sufferers, and they do suffer, are not 'speed', some merely come from the same plant family.  Just as heroin is derived from codeine - think about that next time you pop a pain killer into your mouth!  They are not intended to be ingested the same way as Class A drugs and their effect is therefore not the same.  But regardless of any of these facts, my decision was this; which is crueler?  Sitting back and watching Harry continue on this downward spiral of detentions, whilst not learning a thing, to the point where he will give up and go on drugs of his own accord at 13 for something to do other than go to school.  Or, giving him a medication which can help him pay attention and learn whilst monitoring him constantly for side effects so that by the time he reaches his teenage years he wants to keep learning, he sees a point to school and perhaps doesn't by this point need any medical assistance.  It really was a no-brainer.

The upside of this latest episode is, along with getting him medical help, I called into question the discipline procedure at school which, I felt, should be as inclusive as the education policy.  I do not want another ten years of what I have gone through in just two months.  And quite frankly, our children deserve better and it's time for a change.  Thankfully, the Principal is on the same wavelength and changes are hopefully going to be introduced so that children who don't get social rules or who are impulsive, don't get detentions per se.  A recent article a friend was kind enough to make me aware of regarding school discipline procedures is attached for you to read yourself.  Makes fascinating reading and I hope the trend catches on, for all our children's sake.

Interestingly, my Dad found a few articles on the positive effects caffeine can have on children with ADHD, where the caffeine sends most of us a bit hyper and nuts, it has the reverse effects on them and mirrors the effect of medication.  So now I am no longer the Mum Harry no longer wants and am the coolest Mother ever because I let him drink Red Bull for breakfast!!  Mark Webber will be so proud...

http://acestoohigh.com/2012/04/23/lincoln-high-school-in-walla-walla-wa-tries-new-approach-to-school-discipline-expulsions-drop-85/

Road to Somewhere!

'Well we know where we're going, but we don't know where we've been', the immortal words of Talking Head's 'Road to Nowhere'.   For a long time, we had no idea where we were going, but three years ago, February 7th 2009, was the day we found out where we were heading.  Three years on, it is all too easy to think about all the things we are still struggling with, forgetting where we have been.  But a few things lately have reminded me just where we were a few years ago and just how much Harry has come on in leaps and bounds.

I will never forget February 7th 2009 for several reasons, all of them momentous.  The date will be remembered in my household as the day my younger son, Elliot, decided to rid himself of nappies forever.  A month off of being three, I believe he knew we needed one less stress in our lives by the end of that day.   The date is most synonymous for the rest of the World as being Black Saturday.  The day when the state of Victoria, where we were currently living, suffered some of it's worst bush fires which killed 172 people and left hundreds homeless.  The heat that day can only be equated to how I imagine standing in a fan forced oven would feel.  46.5 degree heat with strong south-easterly winds.  It was a day on which any sensible person would have laid under the air-conditioner with a bikini on, cocktail in hand.  We, however, took a trip to Melbourne in a car which kept breaking down on the motorway because it couldn't cope with the heat.  Given the temperatures and the smoke in the distance, not to mention the stress of a French car which was clearly less Cannes and more Can't, we would not have ventured outside the front door were it not for the fact that we were on our way to receive the results of Harry's second Autism assessment.  And again the date, for me at least, will forever be etched in my memory.

Despite overtones from the assessing psychologist, Sally Rigley, that there were obvious flaws with Harry's first assessment, I had prepared myself to be told the 'worst', that Harry did not have Asperger's.  My heart was literally in my mouth as we waited to hear Sally's words after her opener of 'In my opinion...'.  Unless you have been in this position, you will have trouble comprehending that I wanted the diagnosis.  Having initially been told that Harry 'simply had behavioural issues', Sally's next few words '...Harry does have Asperger's' gave me long sought after answers and I finally knew where we were going.  The euphoria of knowing my son wasn't just a naughty boy, of course gave way to grief a few days later.  Then it was sink or swim time, so I pulled on my rubber ring, arm bands and flippers.  Nobody and nothing, not even Jaws, was going to stop me now.  

I, of course, only had a basic road map to my future, the intricacies of which could not have been anticipated and they still can't.  I am very fortunate to have recently had a small glimpse into where I am heading courtesy of somebody who has already been there and is still travelling the road.  Attending a recent Asperger's conference in Brisbane, I was looking forward to the opening address by Tony Attwood, naturally!  The theme for the conference was positively living with Asperger's, and you know I'm a big advocate of seeing the positives of our lives.  But the main draw was the second presentation by Katherine Sykes.  To the Australian public, Katherine is perhaps unknown.  However, if I was to mention that her son is Declan Sykes, fans of the X Factor will know exactly who I am talking about.

It was revealed towards the beginning of the X Factor series that Declan is an Aspie, something which really didn't come as much of a surprise to those of us with Aspie radars and who watched the X Factor auditions.  What did surprise us was that Declan not only auditioned for X Factor, but did it so well.  Thinking of my own son's anxiety, the thought that one day he could be brave enough to take to a stage in front of hundreds of people, never mind Scary Spice, is inspiring to say the least.  Declan of course made it into the top 12 and has a stunning voice which saw him get through to the top 5 of the show.  The first live show I watched with dropped jaw and my thoughts could not help but gravitate towards Declan's mother.  I could only imagine how proud she must have been feeling at that precise moment, presuming she had come from the same place I was currently in.

Katherine presented her speech with humour, modesty and was heartbreakingly candid.  I will be honest I could not contain the floodgates, whilst Tony Attwood was sitting two seats away from me I might add - oh the shame!  Katherine calls it 'leaking', I was more of a burst pipe and I thank the person behind me who was clearly a plumber!  She had no idea why anyone would be interested in hearing her speak, she was after all, merely the mother of Declan.  What Katherine I suspect is too modest to accept, is that us Mums would have been interested in 'Katherine, the mother of a child with ASC' regardless of her son's TV fame.  Mothers everywhere want and need to hear the stories of other mothers.  It cements the seedling of a feeling that we are not alone, and every time a mother says something that you can relate to, it restores your self-belief a little, the 'it's not just me' sense of relief.

OK, it's fair to say, without her son's appearances on the Australian version of the most famous reality music show in the World, we would not have heard of Katherine Sykes prior to the conference.  Naturally, the fact that Declan made it to the live shows on the X Factor gave hope to all us mothers out there with ASC children, that there is life beyond, and we all wanted to know how that felt.  But even without these factors, Katherine is a remarkable woman and her story is fascinating.  The thought that her son was diagnosed long before autism funding was offered, support groups, if there were any, were few and far between, and books and information on how to help her son were scarce.  She raised her son using her own wits and initiative, not necessarily knowing the 'right' way to do it, but she knew her son and, us Mums all know how important that is.  The cherry on top of the cake was of course that she did it alone, she had to make her own money, whilst being on call 24/7 for her son. 

Katherine and I related on many levels, not least of which was the fact we both have sons who tell us they hate us with disturbing frequency but which we were crying with laughter about.  Again, unless you've been there, this is something which may confuse some of you but trust me it's the only way to cope.  More joyously was the way we could compare where our children were a few years ago, and where they are now.  Declan three years ago was refusing to be touched or hugged, roll on a few years and he's hugging Beyonce on TV, famously more than once!  Katherine told me she watched with pride as Declan throughout the contest made his way from the edge of the stage during the elimination, avoiding the group hug, to eventually being centre stage, in front of the camera, allowing others to hug him and hugging others.  Katherine leaked on more than one occasion.  And here we jump from the X Factor to Finding Nemo!

Recently we were all watching Finding Nemo and it struck me half way through that three years ago, Harry point blank refused to watch it because a scene in the film scared him so much.  A scene in a children's movie!  Now here he was watching it without flinching and I had to take a moment to marvel at what may seem trivial to others, but to me it was priceless.  A few days later, his father was screaming his lungs out on a thrill ride, whilst Harry nonchalantly said it was fun.  Barely a year ago, Harry was refusing to go on even the children's rides at our local theme park, and here he was, outwitting his father who quite frankly needs his head reading based on some of the rides he goes on and finds fun!  Being able to tell people that your son has watched Finding Nemo may not be as much of a dinner party topic as saying he got a hug off Beyonce, but the enormity of the act remains the same to Mothers of children with ASC everywhere.

Katherine Sykes may consider herself to be merely the mother of Declan, but to all the ASC mothers out there, she is so much more than that.   Her story resonated in every parent in the audience at the conference and her experiences cut very close to the bone, save for the teenage years which I am yet to experience, but for which I am now a little more prepared.  However, now that I have a rough idea of where I am heading, I am not quite sure whether to hide or move the entire family to Antarctica!