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