Laying Low

16 Mar

I don’t get back into the Blogosphere much these days.

A long overdue update.

We’re still struggling to unravel the mystery that is the health issues that S is facing since his glandular fever at the end of 2012.

His list of food intolerances is ever growing. He’s currently not eating: gluten, soy, dairy, egg, yeast, corn, sugar, fruit (except a few bananas) and nuts.

This from a boy who could eat pretty much everything on that list above except wheat when he was younger without any side effects at all.

Now though we’re still battling ongoing eczema and hay fever like symptoms (nasal congestion, itchy eyes etc) and changing his diet seems to be the only thing that’s really working.

And he has such limited energy reserves. Fatigue sets in after any big day.

We’re following a sort of GAPS, sort of Paleo type of diet with the exception to both of those that I’m allowing rice. It seems to be tolerated by him just fine and given his Indonesian heritage I’m guessing that makes sense :-).

Anxiety is still an issue, but since we’ve started him on melatonin a week or so ago we’ve been AMAZED at how quickly and stress free he is falling asleep, thus removing one of the biggest anxiety ridden times of the day for him when he’d lie in bed and call me in every 5 minutes to ask me to reassure him about yet another random and unlikely fear.

LOVE the melatonin.

We’ve just decided to cancel our big family holiday to Indonesia for the year. We were supposed to leave in under a month, but I’ve been feeling increasingly uneasy about taking S away when his immune system appears so compromised. His fatigue is no way near the level it was this time last year, but even still, I want so much to focus on his recovery and it didn’t seem to make much sense to return to the place where he probably got sick on the first place. Not to mention the dramas that we’d have with any insurance company if he fell seriously ill over there!

So we’ll be hanging out at home. Mooching about on hammocks on our new back deck.

Laying low.

This year we will get this boy back to full steam!

Birthday Blues

28 Sep

I’ve tried a couple of times to write this, but it seems these days I find it harder to put things into words. So here goes again.

A few days ago, S turned 9. NINE. It barely seems possible. That makes him halfway to manhood. Wow.

In years gone by, I’ve found the lead up to his birthday difficult. As much as I want to celebrate his birthday, it’s awful to remember the day of the birth. It’s weird that a day can be both at the same time incredibly precious and special but also traumatic and sad.

However, it’s so much easier as the years have gone by. I still remember, but the remembering isn’t as hard as it used to be. And now I’m able to focus on how fabulous it is that my beautiful boy has reached another milestone.

This year though, a new curveball came my way. In the weeks leading up to his birthday, S started to talk gloomily about his birthday. He told me that he hates his birthday because if he  hadn’t been so sick when he was born he wouldn’t have CP – which is of course, quite true – but it’s hard to hear my gorgeous boy talk like that without feeling all distraught myself and feeling that any responses that I could give him would be woefully inadequate.

A friend recently shared the abstract of an article about CP and adolescence with me. I don’t want to breach some sort of copyright by copying and pasting the whole abstract here, but here’s the first couple of sentences. Click on it and you can read the rest of the paragraph.

Pre-adolescence is the beginning of self realization that the cerebral palsied child will never be “normal.” Leading questions and unexplained anger begin around the age of nine to eleven years, followed by disbelief, denial and family rejection.


Wow. And here I am. It’s not much help to my boy that recovering from glandular fever comes along with its own set of issues. His energy levels are still so low and he’s very susceptible to melancholy and anxiety whenever he gets too tired. As a result of this and a realisation that neither he nor the school were coping very well with his level of fatigue I homeschooled him for the last 3 weeks of term for 4 days a week. And for all of next term I’ll be doing the same thing 3 days a week in the hope he’ll finally recover and be back to his normal cheeky self all the time.

But it’s such a tricky time I’m realising because his ‘normal’ self is changing as he moves into this pre-adolescent period and I’ll be honest, I’m just quietly freaking out about how important it is that I handle things really well over the next couple of years to avoid him sliding into true adolescence with anything other than good resilience, a strong self esteem and most importantly, a happy soul.

It’s times like this I truly wish he wasn’t my first born. That I knew a little more about what to expect and how best to handle things, but instead, I’m flying by the seat of my pants and ordering books about raising boys and making more appointments with his psychologist to try and give him as much support as he needs. While simultaneously also doing as much as I can to try build his immune system to try and get his physical health into as peak a shape as well as his mental health!

I don’t want to sound gloomy or to suggest that he’s always sad. He is a gorgeous, gorgeous boy and he’s mostly very happy. He loves playing with his younger brothers and is developing a love of music that has meant he and M have started their own punk rock band. S writes the songs and lyrics and M is the lead singer. We’re getting S a keyboard for his birthday (late present, been busy, shopping next week for it!). He enjoys reading books and still wants to be an event organiser when he grows up. I love that he’s named the back deck that his dad built for us over the last few months as ‘Decklands’ – where many concerts and special events are organised and he’s always the first to come up with great ideas of things for us to do together as a family. I am still hopeful he’ll make some more meaningful connections with his peers at school, but for now, we’re doing OK.

And as a good postscript – once his birthday arrived, there was no sadness from any of us. At his request, the whole family spent the day at the Royal Melbourne show. We had a brilliant time going on rides, watching circus performances, visiting the MasterChef kitchen, patting farm animals, trying ‘Sport Stacking‘ (the lovely Sport Stacking guy even gave Satria his own free set of cups that he’s been loving practicing at home), choosing showbags and then watching a rather impressive Motorbike performance and Fireworks show late into the evening. S declared that it was his ‘best birthday ever’ and even though it took him (and me!) two days to recover it was definitely worth it.

I’m so proud of my boy for being such a beautiful, caring, kind, funny and sensitive 9 year old. And I feel blessed every day to have him in my life and in my heart. This week another of the mums that I’ve met on my CP journey had to very sadly farewell her gorgeous son who passed away just a couple of days after his fifth birthday. No mother should have to lose her child. And it’s a poignant reminder that every day you have with your children is special and you need to do your very best to always celebrate what is rather then dwelling too much on what otherwise might have been.

So here’s cheers to another wonderful birthday to my boy and I’m sure that we will have an amazing year ahead x


3 Aug

Well, the Vallergan trial was very short lived. On Monday and Tuesday I was called to pick S up from school early because he was very “spaced out”. He walked into walls giggling, spent quite a bit of time laughing at things and basically behaving very much as though he was high as a kite.
On the Tuesday it was actually the assistant principal who rang me, concerned about how long we were going to continue with the medication because they were worried about his safety in the classroom. Fair call.
Obviously, I wasn’t too happy with having sent my son to school basically stoned either.
On the plus side, he did sleep well and his skin benefited from a break from night time scratching.
I contacted his paediatrician who suggested we reduce the dose. However, I’ve decided to just stop it. It’s not worth the drama.
Instead, we’ve been back to the naturopath and we’re going down a complete opposite path of ditching all antihstamines and trialling some natural alternatives. Yes, it is swinging from one extreme to another but instincts always lead me towards the more natural alternatives when possible. Will see how we go!

Sleeping on it

26 Jul

We had our 6 month check up with our super paed today. She was amazing enough to shift around some appointments so I could bring both boys in at the same time rather than making two trips into the hospital.
What struck me about the visit was that almost the whole discussion had very little to do with either cerebral palsy or autism, despite these conditions being the primary reason we see a developmental paediatrician. I take this as a very good sign – S continue to move forward amazingly with his motor skills and we’ve not had any CP related issues emerge. Ditto, whilst definitely on the spectrum, M is tracking along nicely and doing so well.
What we did discuss most of all was the issues surrounding S’s fatigue and anxiety and the potential root causes of it all. We know that there’s the recovery from glandular fever still at play, but also the trouble we’re having getting to the source of his allergies which cause his eczema, nasal congestion, itchy eyes, sneezing etc. It’s these things that exhaust him so much. And once he’s tired, he’s anxious. It’s a vicious cycle. The other challenge is that he struggles so much to get to sleep at night. Once he’s asleep, he seems to sleep quite soundly, but he is often awake for an hour in bed – either because he’s anxious about something, is itchy or a combination of both.
We’re trialling him on some Vallergan Forte – super strong and more medication is not usually a path I take, but my bag of tricks is pretty empty right now and I am keen to see if getting a better night sleep improves any of the other issues.
We’re also giving Nasonex (nasal spray) another go – which again, in my books is a short term fix, but if it helps him sleep…
In the long term, there’s really not so much the paediatrician could offer. Instead, I’ve booked us into see our naturopath again and I am going to look further into the plans to give the GAPS diet a go. It’s clear he needs some sort of a super clear out to sort out his immune system.
And yep, back to the psychologist too. He needs to get more validation about his anxieties and more strategies to deal with them. His meltdowns are more and more frequent. I sprained my ankle yesterday and when he saw me lying on the couch with my foot in a bandage, he was inconsolable for about half an hour, convinced that I was seriously injured. It’s tough seeing him like that and I really hope I’m able to offer him better solutions over the next few months as I really do feel like I am letting him down…
He’s just gone off to bed. Keen to see if he’s already asleep. I hope he has the sweetest of dreams.


19 Jul

I’ve been thinking a lot lately about sibling support. There are a number of support groups out there for kids who have a sibling with a disability. And as my boys are getting older, and their relationships more complex, I am seeing more and more how each would benefit from such support. However, here’s my challenge. How to engage the sibling who needs support in a program when that sibling himself has a disability?

I’d particularly love for S to take part in a support group so he can learn more about autism and understand a bit more about why his brother is the way he is. It’s becoming a more and more constant source of frustration for S that M will only play games by HIS rules and  for weeks at a time can be hard to engage in an activity that his outside of whatever it is his ‘focus’ has been drawn to. This is hard for S who doesn’t often get to choose the parametres of their play. It’s M’s way or it’s no way.

On the flip side, M can be frustrated by S’s physical limitations. He gets ideas of what they will play and then gets disappointed when S is unable to join in in quite the way that he wants him too. Add to that, his M focused world means he lacks in the insight to understand how sometimes his comments to S about the things he can’t do might be hurtful to S. These comments aren’t nasty in their intention. Just lacking a social filter. For example, the other day S was in tears after M said to him ‘Write better S. You just have to stop wobbling your hands to make the letters not look like baby writing’. In M’s world, a matter of fact statement of advice about improving his writing. In S’s world, an insult about his disability and a criticism of what he can’t do – something he is increasingly sensitive about. He’s finding it hard to see that his younger brother is gaining skills in some areas to exceed his own abilities.

It’s a complex little household I have! School holidays are increasingly exhausting. Adding S’s glandular fever induced fatigue and resulting anxiety and frustration into the mix means that between the two of them, it’s often meltdown city when they spend too much time together.

They love each other. They ADORE each other. They support each other and when they aren’t driving each other crazy they are beautiful to observe together.

But the impact of their additional needs are going to complicate their relationships more and more as they get older. So one of my new missions is to find sibling support groups for each of them that will accommodate their additional needs. And then I have that nagging concern at the back of my mind – is it fair for siblings, taking time out from their own sibling’s disability to then have a child with a disability in their support group? Part of me, the part that believes passionately in an inclusive society, thinks that of course that isn’t an issue. It’s just another sibling joining for support. But on the other hand…..

As I said, a complex little house.

And of course, I haven’t even mentioned A yet. At 3, he’s becoming a very feisty little guy. I guess he needs to be to get himself heard over his two big brothers. He adores both of them unreservedly, but his world view is going to be an interesting one as he gets older. And I imagine he’s going to need the most support of all.

I hope I don’t sound like I am throwing a pity party for myself. Yes, it can be exhausting and yes I spend a lot of time struggling to get the balance right and wondering if I am doing all that I can do to support each of my children with their unique needs. But at the same time, I am super proud of my boys. They are beautiful human beings and I love the fact that I can be confident that they will grow to be caring and accepting of people and definitely not have a narrow world view! And fortunately for me, I’ve never craved a ‘normal’ version of normality. This is my normality and for the most part, I am fine with it. And while there are days I wish it could all be a little easier, I consider myself incredibly lucky that despite their challenges I have three beautiful talented boys who continue to amaze and impress me.

End of term report

3 Jul

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

Career Advice

16 May

Yesterday, I asked A (now 3) what he wants to do when he grows up. He responded by telling me he doesn’t know.

S (now 8) piped up with this career advice for his little brother “Don’t worry. You can be my slave” (followed by him rolling around the floor in hysterics for the next 10 minutes at his own wit).

It’s so nice to start to see my beautiful boy’s true personality emerging again FINALLY after all these months of him being so tired and weak.

Now we just have to keep all fingers and toes crossed that we can get through winter without any illness to allow his immune system to truly strengthen up.

And the whole family needs to steel itself to be prepared for more of his cheeky, whacky sense of humour ;-). Bring it on!


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