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