Post 22 2012

Autism awareness month continues … part 2

The medication James was put on for ADHD (Straterra) takes 6 weeks to build up in your system.  It was six weeks of hell.  He had periods of just sobbing and sobbing, without knowing why. I found this heartbreaking – really hard to watch as a mother!  His behaviour deteriorated terribly at school.  He was running away, particularly at pick up time, and just narrowly avoided being run over a couple of times.  He was having huge meltdowns every day, some requiring both Chris and I to manage him.  Even over the holidays, he just wasn’t any better.  It was awful.  We did go back to our GP who consulted with the Psychiatrist on our behalf, and we did agree that we should wait until the 6-8 week mark before stopping purely so we could definitively rule out that family of medications for him.  I didn’t fancy having to go through all this again ever … so we persevered.  In all this time, we saw absolutely no improvement to his attention. None whatsoever!  Inattention is certainly a feature of autism, but I think in James’ case it is not such a prevalent issue that medication is going to be of any benefit to him!

The holidays were pretty ordinary.  We had lots of meltdowns, poor appetite, crankiness, lots of tears, headaches and just generally difficult behaviour.  As James’ anxiety increases, his obsessive and fixated behaviour escalates.  These holidays saw the advent of the counting obsession.  James obsessively counted, in 5s, in 10s, in 100s, and up to 1000.  Because some of these concepts were new to him, when he would get to place where he didn’t know the next number, he’d completely lose his mind and fall apart.  When given the missing number, he’d then remember it but start counting FROM THE NUMBER 1!!! Seriously!!!  And this would happen constantly throughout the day!  You can imagine my horror when Chris suggested we now learn to count backwards!!!!  I find the obsessional behaviour really challenging as it’s just thoroughly dementing! 

He has now had about a week off that medication.  I binned it after a particularly disturbing meltdown at a birthday party when he just completely lost it!  I couldn’t handle him at all and then he was trying to jump out the car door whilst we were moving!  He was utterly inconsolable.  We had made it to the 8 week mark so I saw no point to persevering any further with it!

I don’t solely blame the medication for the deterioration in James’ behaviour – I’m sure that lots of things contributed to this but the medication certainly wasn’t a help!  I went back to the Psychiatrist this week and we have started his anxiety medication.  Finally, we’re seeing our little boy back! He’s so much calmer, he’s sleeping better, he’s spinning and pacing less.  And very little counting!  Woot!

I have learnt … yet again … that as parents, we are the experts where our children are concerned.  We need to really be driving the ship and ensure that the very best is always being done for our kids. When issues like this happen, you have to have the strength and perseverance to confront the doctor, even imply that they may in fact have got it wrong, and gently move on to the next possibility.  Don’t get me wrong – I’m not blaming the Psychiatrist at all – she can only evaluate the child by what she sees and by what she’s told! Sometimes you just have to be prepared to try a few things in order to ultimately solve the problem.  I think we’re well on the way! 

Bring on the ‘two steps forward’ phase!!!!

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