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

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...