A Blog About a Bloke-Living with WHS

For every positive experience, there is always a negative one. Or that is what I have found. Last night, we had a wonderful time out for tea with our friends. The hardest thing about going out is having to 'shadow' Ryley. The place we went for tea was great. It was a small country pub, and there was really nothing to worry about. But the problem is, I still feel like I always have to keep an eye on Ryley. He is more than able to wander around, follow the kids, sit at the table. But he rarely stays still. He is not able to communicate his needs, and he can't really join in with the other kids as they make up their own games to play. So, he is part of it all. But he isn't. David had the 'night off' so to speak, given that it was his celebration. Usually we take it in turns, but he had a free pass to enjoy himself as much as he could. So, let's just say, I was very tired by the end of the night and felt like I had barely spoken to anyone! I did enjoy myself...

It is really hard not seeing my boys for a whole day and only being able to kiss them goodnight at 10:00 at night. It is the best feeling in the world when you get home late and both your kids come racing over to give you a cuddle and a kiss and start chatting away. Even though we only had $15 to our name last week, we managed to make it through thanks to the kindness of our next door neighbours who knew we couldn't afford food (yes, it was THAT bad) and made sure we had enough to eat (his partner's son works at Bakers Delight). I can't really explain in words how it makes me feel knowing we have people looking out for us. Through the training I have had, I have learnt a few things about building on Ryley's skills and therefore helping to prevent long term behavioural problems. I have also learnt that I really need to stop asking Braeden to do things, because when I am asking him ever-so-politely, it is giving him the opportunity to say NO. I am very much looking for...

Stupid me forgot to take the camera card out to Amphi this weekend. Imagine this, I have lined up the 'perfect' shot of Ryley feeding the sheep with Braeden in the background. I press the button. The camera beeps a million times and tells me it can't record the photo. Meanwhile, Ryley has chucked the hay and wandered off. Braeden is long gone. And I am cursing myself for forgetting the memory card. Oh well. There will be other opportunities. Ryley and Braeden had an absolute ball on Saturday playing with their cousins. For the first time ever, I merely kept an 'eye' on them. They both just wandered around watching David at times (he was busy tiling part of his parents kitchen so he could put the stove in), and spending a lot of time mucking around. Sunday was a another story, there were no cousins for most of the day and Ryley was SO naughty! It is absolutely flippin' freezing here at the moment. I feel like we are going to get snow at any moment. Of c...

I haven't done a Just 'Cos for ages, and I haven't been taking many photos lately. But here are some: Cleaning up Oh look...a penguin... Guitar Hero Waiting for Dad to get home. Ryley and his Poppa, Stanley and Rex, and Poppa's dog Harvey.

Ryley's health is really puzzling us at the moment. This is part of the reason why I jumped at the chance to see his neuro team earlier than I am meant to be. I am assuming that his increase in seizures and constant vomiting has something to do with the Ketogenic Diet, but then again, I am not entirely convinced that is all it is. I think I know in my heart of hearts that we are probably going to have to come off the KD and see what happens. He has been on it now for nearly two years and I think either we make some adjustments to the diet itself (like increase the ratio) or we start thinking about alternatives. He is actually in bed asleep at the moment. He vomited at school so I went and got him. He is ok, but I just knew he needed sleep. I just wish I knew why he was vomiting all the time. Maybe his reflux meds need to be increased again. I don't think it is that though. Sometimes it is hard not to look at Ryley and just see his health issues. Mainly because I can'...

I had a workplace health check today. Bit of a waste of time to be honest. Although no surprise for the one thing that wasn't alright with me. Can you guess? Yep you guessed it...blood pressure waaay too high. Can't imagine why it would be abnormally high. I mean. My life is so stress free... Hmmm. Anyway. Apparently I don't need to do anything. Although some of the girls at work did suggest I find a GOOD social worker. Har har di har. Tonight when I was bathing the kids I noticed just how CHUBBY Ryley has gotten. I knew he was getting bigger, but I don't think I realised how much. He has lovely chunky thighs and he is so well covered. Never thought I would see the day. On the subject of Ryley and his biggerness, he is so very heavy now. I find it a real struggle some days to lift him. He still gets tired easily, so we might be out walking somewhere and all of a sudden he has had enough and I have to carry him. Crikey that's hard. I know there are lots of f...

So. I have my computer back. $165 later. It was all very technical. Apparently it took the computer geek man two and 1/2 hours to figure out that the connection between the computer and the power lead was loose. Because I am a social worker, I couldn't help myself and as he finished trying to feed me a heap of technical jargon, I said "So what I am hearing you say, is that I just need to jiggle the cords to make sure they are in properly". He nearly choked. Comedy reasons. That is why. Comedy reasons. So the blog remains open. I have lots to write about. But no idea where to start. I will make clear though, that I am VERY disappointed with the most recent federal budget which was released this week. Old K-Rudd is not impressing me right now. Anyway. I thought I would remind everyone that I still have this: Ask me something . If you have any questions, please do ask. Finally. Thank you to those who emailed me, messaged me, or just basically checked to see...

I have currently made the blog private while I have no computer to monitor things. A couple of issues have arised recently in terms of privacy which I have now addressed. The blog will be reopened until tomorrow and will be closed over the weekend as I will have no access to it. A couple of things: Any comments that are made by anonymous users who don't sign their name will not appear on the site. I understand that not everyone has signed up to google so that they can follow me publicly which is absolutely fine. But just a reminder that if you do comment, please add your name at the end. I will then respond to your post if I need to (and will publish it). Anything that is written on here is MY OPINION. I do not expect people to agree with me. I will not stop writing because people disagree. I like to be challenged and am more than happy to enter into a debate, but stand by what I write. People who wish to attack me personally will be blocked or I will make the blog private p...

As Mother's Day approaches, I have been reflecting back on my role as a mother and what it means. I am not just a Mum. I am a million things. But the most important thing I will ever do in my life will be a mother. And I really don't want to stuff it up. Having a child with a disability means you are no longer just a Mum. It means you are your child's voice. You are sometimes their arms and legs. You have to pay attention to every.single.detail or else you will end up with a sick or injured child. Or worse. Your child could end up very very sad. It is hard. Being a Mum of a child who can't talk. Who can't tell you about their excursion to the Aquarium. Who can't tell you if he got a window seat on the bus. Who can't tell you if he loved seeing the stingrays. I don't stop asking him though. About his day, I mean. I desperately look for changes in his facial expressions, to see if he is telling me or not. Does that smile mean that he had a good ...

Last night Ryley got out of bed and wandered out to the kitchen, as he often does. David and Braeden were doing the dishes and I was trying to master Guitar Hero. As Ryley got closer to David, he had a seizure and fell, and before anyone could catch him, he hit his head on one of the door handles of the draws. Talk about panic (well, I did, David stayed calm). We applied pressure and hotfooted it up to the emergency department, where we used our powers of persuasion (aka mentioned 'seizure') and went straight in. We got a lovely junior doctor who could barely speak english, so again, we used this to our advantage and bamboozled him, so that he simply glued Ryley up and let us go. Neither the nurse or doctor had heard of WHS or the ketogenic diet, and they even struggled with what myoclonic seizures were (this wouldn't happen in WHS town.). Throughout the whole thing, Ryley was really good (as usual) and Braeden was just gorgeous. He was so worried about Ryley and had ...