It’s school holidays again. We’re all exhausted after a busy term. No-one more so than S. He’s still so compromised by the residual fatigue from having glandular fever over 9 months ago. He gets so tired, so quickly and once he’s tired he not only struggles to get things done, but he also struggles with his anxiety and his emotions.
We’re seeing more and more glimpses of the true S, with his bubbly personality and determined spirit, but in between times, he’s so vulnerable to getting easily upset and somewhat irrational about his anxieties and his perception about what’s going on around him. It’s hard work having to constantly reassure him and to give him the support that he needs and knowing how draining this experience is for me, I can only imagine how difficult it is for him.
He’s still also battling with his auto-immune condition (probably related) which means his eczema is often quite bad and he has constant nasal congestion, itchy eyes and sneezing.
It’s not fair, honestly that he’s battling all that on top of the whole CP deal. It’d be nice if he could be cut a break.
And it’s amazing, that despite all this, and the many days of school he’s had to miss this semester that he still managed to come him with a very respectable school report, showing that he’s making great gains in most areas. He’s still got some weaknesses to work through, but he is in the higher groups in his grade in both reading and maths. Proud mum – and a relieved one too that he’s not slipping behind.
We’ve decided to give up on his Dynavox journey as when it got sent to Queensland for repairs it didn’t return for 3 months (replacement battery suppliers let us down!). While it was gone, S was given a laptop to use at school and we bought him one for at home. His fine motor control has improved to such a point that he can access the laptop for all his written work or alternatively uses the iPad. He’s also using the iPad and PODD for communication support.
We were going to persist with the Dynavox, but it returned from its 3 months in sunny Queensland with a ‘fatal error’ message which means it needs to go back to Queensland again! We’ve decided that’s a sign that our Dynavox days are over.
His newest Second skin suit arrived a week or so ago. He’s none too impressed, but I hope once he gets used to wearing it again it will help reduce his fatigue as it gives more support to his body and allows him some control over his movements. The problem will be the battle of wills getting him into the suit every morning! He’s fine once its on, but he loathes putting it on. I’ve set him the school holiday task of planning a reward system that he feels best rewards him for wearing it.
The end of last term also brought home M’s first ever school report. And to my immense pride and GREAT relief, he has starred his way through the semester, achieving all that he should and a bit more in some areas. I know it sounds strange to say to use the word ‘relief’, but given all the very hard work that we put in last year to get him ready for school, I feel as though finally, finally I can relax, knowing that while there’s always going to be a few extra challenges for my boy, he’s going to be OK. More than OK. He’s going to shine.
He’s not only done well in the classroom but he’s made friends and loves playing down ball with what he calls his ‘crew’ at lunchtime.
And not to forgot my beautiful baby A, who at 3 and a half can barely be called a baby anymore. He is very busy and often quite demanding, but he is thriving at 3 year old kinder and developing into a lovely boy with a hilarious sense of cheeky humour and fun – though he’s a little too easily lead by others and I can see he’s the one I am going to most have to keep my eyes on in his teenage years :-). At least, I am fairly sure by then he will be rid of his one terrible bad habit – which is waking up at 4.30am every morning, bright as a button ready to start the day. Yawn.
As for me, after a few months of barely being able to run due to a hip injury, I am back in training. I was hoping to run my first half marathon later this month, but I’ve had to put that off until October. It’s more fitting anyway that my first half marathon will be run during the Melbourne marathon festival given that it was the Melbourne marathon that got me started running in the first place.
I’ve also joined a gym for the first time in my life! The reason my hip got injured is because I lack core strength and put too much strain on my hips during longer runs. I hope some different training will not only keep me running but also help me shed the extra kilos I have gained since the weather has cooled ;-).
We’re keeping it pretty low key these school holidays. Play dates with good friends, a road trip weekend away and M has a mission to travel to the end of every Metro train line. He’s already covered nearly half. (Thank goodness their dad enjoys travelling on the trains with them!)
As always, we’re a busy household and things probably get done a bit differently than in most homes, but we’re happy, and mostly healthy (or getting there anyway!) and feeling positive about the second half of 2013 x