A Blog About a Bloke-Living with WHS

Last post of November! Phew! I made it through!! <-------And I even managed to make my house look like this. OK. That's not true. Though it does look very festive doesn't it??! We put lights up every year usually. Except last year we caught some little kids trying to pinch them and pull them down, so it has very much put us off having any up this year. We will put them inside instead I think! So, tomorrow is the first day of summer and the current temperature is a balmy 20 degrees celcius. Heat wave I tell ya. At least the rain has stopped for a brief interlude, so that part is good. December is one of the busiest times of year for us. We have end of year school concert, christmas parties for work and daycare. Christmas parties with friends. We generally catch up with a few of our good friends before christmas and the kids love it. No matter how busy we all get, we still manage it. Hopefully I am going to start my christmas shopping on the weekend. Start and finish it wo...

Today is the second last day of NaBloPoMo. Woot! I have almost made it through a whole month of posting every day. Despite the reassurances from a couple of my friends who told me they have enjoyed reading every day, I still can't help but think there were many many boring posts to fill in the days. So what am I going to do about this blog? I won't make it private at this stage. I will keep posting my Tell Me About it Thursday posts and remember if you want me to write about anything in particular let me know. I will most likely NOT be posting everyday in December (in fact, I probably won't post at all ha!) I have discovered that my blog is for those who have a child with a disability. It is about connecting and providing an insight into a life that is a little different from most. I will try and have some more posts about my culinary creations, even though I haven't been creating in the kitchen as much as I would have liked to. I am getting back into my runni...

This weekend the Doeke's came to visit from South Australia! So Saturday night we had a little bit of a party at our place which included the Youngs and the Sheens too. We had an awesome time just chatting, playing the Wii, playing with the kids and sharing information with each other. There is something really special about hanging out with other families who can relate to your experiences. You never feel judged, and you never feel like you have to explain anything. We are always learning new things from each other. Very much looking forward to the conference and getting the chance to chat with the rest of our WHS family and have FUN (because there is a LOT of that planned for the Ballarat conference). We are especially looking forward to meeting the new members of our WHS family, and reconnecting with some who haven't been to a conference for ages. I know I harp on about it all the time, but it doesn't matter where you come from, or what you believe in, our kids/adults...

Sit in it, jump in it, and lie down in it of course! Braeden had an absolute ball in it. The weather is so muggy at the moment and the rain! Oh my goodness, the rain is unbelievable! So much of it! Which is great of course, but I miss the sunshine!

I know I was a bit vague in the last post about a couple of things and sometimes I just assume everyone knows what I am talking about...sorry!! So here is a bit more information about the laws in Australia in regards to when a person with a disability turns 18. Basically, when a person turns 18 in Australia, regardless of whether they have an intellectual disability or not, are legally an adult. Which means that legally, their parents cannot make their decisions for them, or be held responsible for their actions. A person with a disability over the age of 18 needs to have a guardian appointed to them to help them make their decisions, particularly if they cannot make their decisions for themselves. In the eyes of the law, this doesn't automatically mean it will be one of their parents. There is an application process and a hearing (with the relevant tribunal in your state-in Vic, it is VCAT) at which point it will be decided who the guardian will be. You can read more abo...

For today's post, I am going to cheat a little and just point you in the direction of a great new blog. Most of my long-term readers will know I work for a disability agency called Pinarc. We are moving with the times and now have a great new blog up and running. You can find it here: PINARC SUPPORT SERVICES BLOG The post over there today has been written by some adults living in a CRU. Pretty sobering reading really. They raise some great points. I personally have a lot of trouble thinking too much about the future. I mean, Ryley isn't even 9 yet. But the reality is that someday soon, I am going to have to think about it all. And that scares me. When he turns 18, I am not longer his parent, I have to become his legal guardian or something just so I can continue to make his decisions for him and have a say in what happens. I can't even imagine at this point of my life NOT having full control over his wellbeing. He can indicate to me and David what his needs are, b...

I am currently trying to night wean Braeden. And it isn't going too well. For those of you new to the blog, I am still breastfeeding Braeden. He tends to feed through the night still, sometimes up to 4 times. He also feeds in the morning before breakfast and sometimes during the day. Most people don't understand why I am still BFing. I think I only have 1 other friend who has BF their child past 2 years old. Breastfeeding at this age isn't necessarily about nutrition, although it is still full of wonderful nutrients. It is more about comfort, security and emotional attachment. This is why it is so hard to wean Braeden. When he wakes in the night, for whatever reason, he wants his Mum, and he wants his Meerkat and he wants his "More". In that order. Imagine his distress when I don't give him his "More" which he has had for nearly 3 years? I have to slowly introduce a drink of water instead of "More" and this will take time. And let's...

I did one of these last year and they kept me laughing for ages!! The kids wanted to watch it on repeat. You can go here  to make them yourself.

Carpet being laid as we speak. Which means that we are very very close to finishing the renovations. (Well ok, bathroom still not really started and missing plaster, but ssshhh). I can't tell you how excited I am. It has taken us over 2 years to get to this point because we have had to do the work when the kids are in bed, or somehow on the weekends with the kids under our feet. David has done the majority of the work, and you can see his craftmanship in the new desk he has built me, or the tiling he has done, or the plastering, or the deck that he built. Now I am actually going to have to clean my house and find homes for things instead of dumping it on the concrete slab in the back room. But I can live with that!! And, for those following the Braeden swimming saga, he did really well again today. His teacher was full of compliments for him and she really encouraged and helped him today. He didn't want to do all the activities and there was still some neck clinging, b...

Today we went out to the Mount William Station which is out near Willaura. The MountWilliam Homestead was built in 1859, and the bluestone woolshed was built in 1842 and is still used today! It is just beautiful out there. The gardens are amazing! I have decided I want to live there. Of course, I might need a bit more money especially since there are 3 full time gardeners employed just for the upkeep of the gardens. I can't begin to think how many more people are employed to run the farm itself! Now. Keep in the back of your mind the fact that Ryley has always hated horses. I think it was something about the unpredictability of them or something. My sister has ponies and he often gets a chance to ride, but he has always been too scared. Not today. For some reason (and part of me puts it down to Braeden), Ryley decided he would go for a ride thankyou. We did know the girl who was leading him which helped. She got him to pat the horse first, then put his helmet on, then get on...

That Braeden can do his own buttons up. Get's a bit stuck with the bottom ones, but really, he is not even 3 yet. Some kids can't master buttons until 4 or 5. That Ryley gets to hang out with the older kids from next door. Jack is 14 now but still doesn't mind coming in to hang out and Ryley LOVES it. That the kids behaved so well out at the Rally in the Valley. Such a lovely morning relaxing with the Kricaks enjoying the festival. That the sunshine is out and here to stay for at least week!! WOOHOO!!! Oh Sunshine, I have missed you. That Ryley got Student of the Week this week for being able to walk along the hydro pool (which also means he has grown taller again)! That Braeden doesn't stop asking "What's that from", and he carefully listens to the explanation no matter how many times he asks the same thing!

Am I allowed to get excited about Christmas yet? Please Please Please. Ok, I don't really permission do I? There is something in the air this year that is making me really excited for Christmas. Maybe it's the promise of many weeks off work. Maybe it's the promise of summer. Or maybe, just maybe, I am working hard to build the christmas magic for my kids. Although Ryley is nearly 9 and at an age where the the validity of Santa Claus is questioned, he is really only just understanding the whole concept (or at least able to show us his excitement). And Braeden really understands this year and has that look of wonder in his eyes whenever he sees a christmas decoration. So, I am staring early and have a few little christmas things scattered around the house. I can't help it. Christmas is a time for celebration. Not only because it is when Jesus was born, but because it is the time that you get to share with family. My mother in law gave me the biggest complimen...

                                                 Setting Goals...huh? Today's post comes courtesy of my day-long team planning day at work today. Something we discussed in length was the setting of goals, and how on earth should this be done. It is more complex than you think. I can clearly remember therapists asking me when they first came out to meet me and Ryley that question that I couldn't seem to answer "So, what are your goals"or "What are you wanting me to help you with?". I used to stammer and stutter and say "Um..I'm not really sure". What I felt like saying was: "Can you please just tell me what I need to do so that he can start reaching his milestones and appear to be a normal boy?". It always embarrassed me that I couldn't gi...

I know, I know. I am posting early for once. I am thinking I will probably want to go to bed early tonight because I am pretty much exhausted, physically and emotionally. We have had a tough week last week, and it hasn't gotten much better this week. David's Dad is yet to have his surgery, so he is still in hospital. My nephew has had his surgery and out of his induced coma, so hopefully on the road to recovery now. I just feel...tired. I am planning to go for a run tonight though, even if it is just a little one. I really need to clear my head.. Running does that. Good news is that we are getting carpet done on Monday next week, which means that our new loungeroom and spare room will be ready for furniture!! WOOHOO!!!! I so can't wait.

Ha! Although I am extremely late with today's blog post, it is only 10:57pm, so really, I have like an hour or so before I am too late. I am cutting it fine because tonight we had my little brothers engagement party down in Melbourne, so we only got back about 1/2 hour ago. Tuesday night is perhaps not the best of nights for such a party, but in his world, it is the best night for him. So off we raced straight after school to the party. We had a wonderful time although I know that Ryley will most likely vomit within the next 24 hours or so from tiredness, but the main thing is he had fun!! I forgot my camera, so I don't have any photos. It is so nice to see my little brother so happy. His fiance is lovely and they make a great couple! On a bit of a sadder note, our little nephew Eric is in ICU at the RCH at the moment after a bad accident, so please say some prayers for him if you can. We are all very worried about him. I am off to briefly check emails then head to b...

Today, I nearly burst with pride. Braeden walked on the mat, not once, but twice. This is the same mat that he told me he was scared of, that he had nightmares about. Today, he conquered his own fears. I am so so proud of him. He is still really clingy with some of the swimming bits in the deep end, but he did much better today. I tried really hard not to get stressed, because I think he was starting to feed off that a bit. I am very much a fan of gentle parenting, which means not yelling much (well ok, you aren't meant to yell at all, but no one is perfect!), encouraging your child with positive reinforcement, and teaching them at their own pace. It's not that I don't believe in punishment, because I am a strong believer in setting up boundaries for kids, but I prefer to show the boys that there are always consequences to behaviour. Imagine acting like a toddler when you are a teenager! I shudder at the thought, therefore am starting by teaching the kids now that ...

Today we went on a good old family drive. We used to go on them all the time. Then that stopped for some reason. Today we went out to Hepburn Springs, then on to the Chocolate Mill and then to Newstead, finally heading home. Ryley got a bit upset at the Chocolate Mill for some reason. I am not sure what was wrong, but we managed to calm him down. Here are a few pics. I will put more on my facebook page.

Bathtime fun!!

This posting every day thing has been really hard this week. As you may remember from my Monday post (or was it Tuesday, can't remember), David's Dad had a heart attack. He has been in hospital ever since and only today has been taken down to Geelong Hospital so that they can attempt to put a stent in, or, if that fails, it will be another bypass. So Nanna has stayed here all week and we have just got back from taking her down to Geelong. It has been a massive week. So I am sorry, but tonight's post is going to be pretty boring really. I am utterly exhausted and am going to have a shower and watch something crap on tv. I will endeavour to be more interesting tomorrow!!

             Acceptance of People with Disabilities-Does our society really accept difference? In the not too distant past, people with disabilities were institutionalised and were subjected to all kinds of horrific 'therapy'. I shudder when I think about electric shock treatment, beatings, starvation and people being put in straight jackets. It's hard to imagine that this is the way that people with disabilities were treated 30 years ago. Things have changed, but have attitudes? Growing up, my only real experience with someone who had a disability was with my 2nd cousin. I can remember feeling really sad for him, and wishing so much that he could walk and do what we did. I often thought I could a longing in his eyes too, but then I don't remember me ever spending much time actually including him in my play. I can also remember another child at primary school who couldn't talk properly and noone wanted to play with her. ...

Why is it that as soon as you tell yourself you can't have something, you want it even more? I cannot for the life of me stop eating chocolate this week, despite trying ever-so-hard. I think I am just hoping that eating copious amounts of chocolate will make my swollen sore throat disappear. I am guessing though, it probably won't. In my defence though, I did try and get an appointment with my GP today only to be told that I can maybe be squeezed in on Monday. Um. Don't worry, I will just keep eating chocolate thanks, and maybe my throat will completely close over and then I won't be able to eat anything, therefore, helping me lose all the weight I am gaining from the chocolate that I can't stop eating. Yeah. That makes sense hey? Bed early for me tonight, I think.

Amount of exercise done towards my goal of running 10kms: NIL New things planted in the garden: NIL Weeds pulled from garden: NIL New creations in the kitchen: NIL Oh the goals are going just fiiiiine. Mind you, the sun is out and there is some warmth happening and that is almost a little foreign. It's shorts weather all of a sudden, and holy moly a) we have no shorts and b) I really don't have a body that wants to be shown in public right now (did someone say flappy arms?). All jokes aside, the sunshine is lovely, and I am looking forward to riding my bike to work via childcare, just as soon as life gets back to normal (and my throat stops hurting and my body stops aching-damn flu virus thing just won't go away). PS. It is 5 weeks until the end of Term 4. Which means long holidays for us!!! Yay Yay oh Yay.

Today has been one of those days where you just have to shake your head and count the minutes until it is bed time. It began with swimming. Now to be honest, I am dreading having to go next week. Braeden was ok for the first bit of the lesson, and then all of a sudden he decided he wasn't going to do anything. The teacher looked at me as though I was causing him to be scared. Um. No. He is just strongwilled and if he isn't sure about something, well, he digs the heels in and refuses to do it. I will not force him. I have to say though, I could feel the stress building up inside me as I wondered why on earth I am forking out the dollars to have him cling to my neck. But. I will perservere, because outside of the lesson he is enjoying himself. In fact, he practices in the bath every night now. Tonight, he was even getting Ryley to complete the activities. Which was pretty funny to watch. Ryley just let him, with a bemused smirk on his face. At the end of the day, I thin...

Today we went to Melbourne to celebrate Elliott's 5th birthday. I can't believe another year has passed by already! We had a fabulous time. Braeden chased pigeons, Ryley ate way too many bacon balls, and we loved seeing everyone that we met last year! Here are a couple of pics: Gathering in close to sing Happy Birthday. The man himself. Thanks for another great day Liv!!

I am tired. Have had fabulous day on our shopping bus tour fundraiser. Spent too much. Laughed a hell of a lot. Now have oversized beige g-string which someone else won, but decided I should have it. Did so much christmas shopping!!! Raised a lot of money!! Want to thank everyone for coming, we had an awesome group. 'Specially want to thank Andrea for organising the whole thing. And, thank you all for your comments in relation to my post below. Much love to you all xoxo Signing off to go enjoy glass of champers, as I got home to boys in bed woot woot!!

So. It is day 5 of my attempt to write in this blog every day. Anyone bored yet? Or anyone still reading? I often think about why I write this blog and whether or not I care if people read or not. Mostly I write this blog for me. One day I want to be able to look back and read it, or at the very least, read it to Ryley and Braeden. Pretty cool thing to be able to give your kids I reckon, an insight into how I felt about them as they grew up (just in case they ever forget). Plus it is a pretty good record of their childhood. Sometimes I wonder who is reading this blog. Do people read it? Do I bite the bullet and make it private? I am going to make a decision about that at the end of November. My plan for this month is to see if I gain any more followers, see if people are interested in the things I write and to decide whether I want to become more serious about this blog and publicise it more, or make it private. I am really looking forward to having to write something every...

                                                Labels, Diagnosis and What Next? I was talking to another mother last week (Hiya Shaz if you are reading!) and we were discussing what it felt like for us when we first got the diagnosis of Wolf-Hirschhorn Syndrome. Because Ryley wasn't officially diagnosed until he was 2 years old, it was actually a huge relief for us. To finally have a name, to be able to share an identity with others, and to be able to move forward gave us a sense of peace. Shaz agreed that for them, even though they recieved the diagnosis much much earlier, they also didn't feel devastation, they just wanted to move forwad. For us, the label didn't change Ryley. It didn't mean he was WHS. He was still Ryley, the one we loved ...

Does anyone else have one of these? I applied for one ages ago and it finally came last week. This week, I got the directory of places to use the card. It actually looks alright! I am sure that as more businesses come on board the program will expand, but looks like I might have to go through the booklet and see where I can get discounts. I have to admit though, it kinda embarrasses me to use discount cards or coupons. I sort of feel like I should give the card to someone who really needs it. Now, I know this is fairly stupid logic, particularly when I was only complaining not so long ago about the lack of funding and money available to assist Carers and their loved ones. But I dunno. Maybe I should use it somewhere and see if it truly is accepted. Because I hate it when you go to use something like a discount card (hello RACV Silver discount card) and the person looks at you like they don't know what you are talking about (and then they have to check with their manager who ...

I was having a read of E.'s blog over at Whining at the world  and she wrote about doing this thing called NaBloPoMo which is basically National Blog Posting Month which is hosted here . So I thought that I would join up, hence the fancy little picture in the top right hand corner . I had a whole post written in my head this morning. Now I can't remember a single bit of what I had 'written'. So you are stuck reading some fluffy facts. Braeden can say his full name now and it is so cute. Ryley decided to sit on top of the couch this morning for some reason. He was very proud of himself too just quietly. There is still no sign of Spring here, even though it is officially summer in 4 weeks (Um? Love the rain, but the coldness...had enough thanks!). I am yet to do any exercise after my being sick for what felt like forever. So am not even a single bit closer to my running goal. David got 3 doors for free today (without a single mark on them) which has saved us...

So, Braeden started weekly swimming lessons at our local YMCA a few weeks ago. He took to it like a duck in water. He was confidently 'dig, dig, digging', 'kick, kick, kicking' and blowing bubbles like a blowfish (if they were to blow bubbles). The second week was much the same. In fact, David even went so far as to declare that there was no way he was going to get up at 4am to take Braeden to swimming  (given that he is the next Ian Thorpe). And then, there came week 3. Braeden became Mr Clingwrap. He refused to do anything and announced he was scared of the mat. No matter how much I coaxed him, held him, whispered things like "Mumma's got you", he refused to do anything. Week 4 and his friend Ellie was back from her holiday. I thought this may have helped. It did briefly until Braeden remembered he was actually expected to do stuff, like, in the water. This week was week 5. Much the same thing happened until the lesson had finished. My friend ...