Tuesday, November 30, 2010

And so we finish

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 would be even better, but I doubt I could be that lucky. Our christmas tree will go up sometime in the next few days and I am going to crank the Lee Kernaghan Bush Christmas Carols up loud. And, I am going to make my first batch of christmas shortbread.

I love the build up to Christmas. And so do the kids. Braeden is already trying to sing Jingle Bells. When I say trying, he basically makes his own tune to the words "Jingle Bell"!! Ryley is busy carrying around the jingling Santa and dancing away.

Oh yeah, it is less than 3 weeks now until I am on holidays (not that I am counting or anything!).

Monday, November 29, 2010

2nd last day

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 running slowly, though the weather has been too crap for my liking, which is a poor excuse, I know, but I am sticking to it.
Thank you to all my loyal readers, and welcome to my new ones. A HUGE thankyou to everyone who finds the time to comment. I love and appreciate comments because that is how I know that people are actually reading!

Sunday, November 28, 2010

WHS weekend

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 with WHS connect us in a way that you can't explain.
Ryley and Sarah (Rachael's big sister) out for coffee

Braeden and Rachael waiting for their babycino's

Ryley, Rachael, Braeden, Ellie & Elliott

Probably the BEST picture of all because they are all mucking around!!

Saturday, November 27, 2010

What to do when it rains and leaves puddles?

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!

Friday, November 26, 2010

Clarifying the guardianship issue

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 about it here: Vic Law Reform Paper or here: Fachsia-People with a Disability

Every State in Australia will have a slightly different approach.

This is as much as I know at this stage. I do know of one of our WHS families who went through all of this with her daughter and had an awful time. It will stay in my mind forever I think and perhaps that is why it all scares me a bit.

I do need to do more research into it and hopefully the process isn't as awful as it sounds.

Thursday, November 25, 2010

Tell Me About it Thursday

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:


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, but we are the ones giving him the opportunities and, at the end of the day, controlling nearly every aspect of his life.
What happens when that is taken out of our hands? What if it is put into someone else's hands? Someone who doesn't know Ryley that well.
I know it sounds like I am a crazy control freak of a mother, but when you have a non-verbal child, holy shit, how else am I meant to be???

I know I am not the only one who worries about my kids future. That comes with this whole parenting gig. But for a child a with a disability, it is so much more complex.
I often say that Ryley can always live with us. We will make whatever adaptations in our lives that we need to make to ensure he stays with us. But the other side of that is, what if Ryley would prefer to live in a CRU? What if he doesn't want to live at home? He is a switched on kid. Just because he can't talk, doesn't mean he has no idea what is going on around him. What happens if he ends up getting really angry with us for not letting him grow up and move out?

It will do your head in.
Sometimes I think too much.

Anyway. Go and have a read of the Pinarc blog.

Wednesday, November 24, 2010

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 be honest, a drink of water in a plastic cup is not exactly inviting after having the warmth and comfort of your mother holding you and having warm milk on...er...tap.

So I expect it to be a long process. Which is ok. He is already starting to show his distress in his behaviour. The last two mornings he has been hysterical when I have left him at childcare and clinging for dear life to my neck.
Not a good way to start your day (I was in tears as I left this morning).
I know that this behaviour is linked to the very big changes I am starting to make in his life in regards to weaning.
Poor kid.
But I have made the decision to start night weaning him at the very least, and I need to stick to it. I am not going to stop BFing him completely just yet, but have to start somewhere.

On another note, please check out Amariah's Blog  she is a beautiful little girl with WHS and she is 11 years old!

Tuesday, November 23, 2010

A bit of fun

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.

Monday, November 22, 2010

Carpet. That is all.

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, but I am really proud of him!
We did hang around until 12pm because he was so busy practising his new skills.

Only 8 more days of the month of posting to go. Will be glad in some ways not to have to post everyday. I kind of feel like I am boring as anything.
'til tomorrow...

Sunday, November 21, 2010

Horsing around

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!

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. I held him and at first he wanted to get off, but he relaxed really quickly and was laughing his head off!!!

Braeden wanted to ride the big one, but had to be content with the tiny one. He wasn't too sure at first, but loved it and didn't want to get off!!

We have had a lovely weekend relaxing in the sun.
Now to look forward to next weekend and our mini WHS get together!!

Saturday, November 20, 2010

Things I love today

  • 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!

Friday, November 19, 2010

Christmas is in the air

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 compliment last week (probably without knowing how much it really meant to me). She remarked "you are such a close family", meaning me, David and the boys. I think it was because I was giving Ryley his PEG feed and Braeden was sitting on my knee to watch tv, so we were, well, kinda close, but, I love that someone thinks we are a close family. Because I would hope for nothing less.

I know I am not the only one who loves the magic of christmas. Anyone else going to confess??!!

Thursday, November 18, 2010

Tell Me About it Thursday

                                                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 give a definite answer. I wanted him to enjoy life, and not be forced into positions that weren't comfortable, or made to do things he didn't want to do, regardless of how they helped him develop. But at the same time, I wanted to know how to help him (and some part of me wanted someone to tell me I was actually doing ok).

So how do you set goals for your child?
A good professional will ask about what your child's strengths are first. They will ask what they like and what they don't like. They will probably suggest an assessment to see where they are at. They should discuss this with you, explain things, answer your questions. You should be then be able to identify where to start in terms of therapy. And then maybe, just maybe you can start to set some goals.

Of course, you may already know what you want your child to achieve. That is great! But often there are steps that need to be achieved first, so it is a matter of being really clear about what those steps are.
Again, team effort between you and the therapist will help make this work.

Now that Ryley is at school, I find it a lot easier to set goals for him. I have goals that we work on here at home, that sometimes overlap with school. The key for us has been never setting time limits. We believe that Ryley can achieve anything he wants to. But it is in his own time. No amount of therapy will ever make it happen faster. I will never forget the day Ryley started crawling. He was 2 years and 2 months old. He had never once shown that he was ever going to crawl. He would always roll everywhere or sit. Then one day he decided to crawl to his Poppa.
Ryley just did it when he was ready.

A bit like the walking thing. Ryley had never had a little brother for motivation before. All of a sudden here was his brother starting to walk around. Suddenly Ryley decided he too could do that. So he did. Despite us working on walking for 7 years!!

So we will always set goals for him. Sometimes it really helps having a professional help you with it though!

How do other find goal setting? Hard? Easy? As a professional, I find that families do have trouble identifying specific goals at times. But find that once they start talking in terms of the strengths of their child, the impossible can sometimes become the possible through goal setting. What do you think?

Wednesday, November 17, 2010

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.

Tuesday, November 16, 2010

Bet ya thought I had forgotten

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 bed. It has been a long day!!

Monday, November 15, 2010

Very proud

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 there are other ways to express their anger and frustration and that sometimes in life things are hard, and you can't always get your own way! Plus your childhood is meant to mostly be fun and filled with lots of wonderful experiences. We are going ok with that bit I think!

I know.
I can hear you say "Let me know how you go with that" and I can see that sarcastic tone.
I am saying it to myself don't worry.

You can really only take each situation as it comes. You never really know what the challenges will be, but sometimes you just need to stop and listen to your child. Encourage, comfort and guide them through the challenges. All I ever did with Braeden was tell him it was ok to be scared. Tell him that he didn't have to go on the mat if he didn't want to. We talked it all through a million times. Then it was him who decided he would walk on the mat. Pretty good for a not-yet-3 year old.

Let's hope all the parenting challenges I come across will be this easily solved.
Somehow I think not!!!

Sunday, November 14, 2010

Ye Ole Family Drive

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.

Saturday, November 13, 2010

Friday, November 12, 2010

Can't keep up

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!!

Thursday, November 11, 2010

Tell Me About it Thursday

            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. She was my friends sister. We used to let her play with us, and again, I can remember feeling really sad for her.
This isn't really that long ago (ok, so it is somewhere on the other side of 20 years ago), so in some ways, I can see that in terms of education and schooling, we have come an awful long way.

Past learning plays a huge role in how we respond to things. And this is why it is so important that we teach our children that difference should be embraced, because that will help form the way people with disabilities will be looked at in the future.

So, do I think that society accepts people with disabilities?
As a general rule, no.
But I do think we are getting better.

There are still many people who come from a time when people with disabilities were locked away. They were separated from society because they looked funny, or made funny noises, and couldn't do things. It was assumed that they couldn't understand anything-can anyone remember the word 'dumb' being used to refer to those with disabilities?
It is hard for people in this generation to change their views. It takes education. And sometimes, they simply cannot see past the disability.
These generations have raised either our parents, or raised us, and unless you have contact with someone with a disability, then often you can't understand what it truly is like.

In some ways that explains why attitudes are so hard to change. Our past still contributes to our present. The attitudes have been formed over time, and they will take some time to change (which is where we come in).

There are many programs that are now community based. Childcare centres and kinders are given support from the government (though it could be so much more) to enable children with disabilities to have access to the same things as everyone else.
Schools are generally becoming better at inclusion. Though still has a long way to go.
The issues still remain though, for what happens when school is finished. But that's another post for another day.

How do we help people accept difference in ability?
By continued education.
By always giving our children every opportunity to experience life that we can.
By not hiding our kids away.
And by us standing up together and saying that WE LOVE SOMEONE WITH A DISABILITY!

So, I turn it over to you guys. If you want to comment, please do. I know that as a parent of a child with a disability you often come across situations that are unpleasant. But there are also times when your child's disability is embraced and celebrated. Anyone want to share their thoughts on this topic???

Wednesday, November 10, 2010

Must. Stop. Eating. Chocolate

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.
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.
That makes sense hey?

Bed early for me tonight, I think.

Tuesday, November 9, 2010

How's those goals going then?

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.

Monday, November 8, 2010

It's all uphill from here right?

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.
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 think Braeden just needs to know what to expect next and right now he still isn't quite sure. It's a good lesson to learn really, because if Braeden is like that and he is 'neurotypical', imagine how hard it must be for someone like Ryley who can't ask questions.
Routine is so important for kids.
I always make sure Ryley knows what is happening. He gets very upset when he doesn't know what is happening or what people are expecting him to do (rightly so too).

Which is why tonight, when he heard me and David talking about how his beloved Poppa was in hospital he got incredibly upset and was sobbing his little heart out.
Ryley is extremely close to his Poppa and today, his Poppa had a heart attack. He is ok, but in hospital and it has been a worrying day.
In fact, right now, Ryley won't go to sleep because he knows Nanna is coming to stay and I know he wants to see Poppa. I will have trouble getting him to school in the morning, though I will do my best to reassure him.

Tomorrow is a new day.
Really hoping my father in law is ok.

Sunday, November 7, 2010

Elliotts Birthday

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!!

Saturday, November 6, 2010

Shortest post on record

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!!

Friday, November 5, 2010

Ho Hum Day 5

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 day actually. I think this blog might go through some changes.

Thursday, November 4, 2010

Tell Me About it Thursday

                                                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 and were proud of.
But for us, at least, there was an explanation why he wasn't quite the same as others.
I wrote something when he was about 2 and 1/2 and you can read it here: 100 posts-Glimpses of the past. It remains one of the most emotional pieces of writing I have ever written.

So while the diagnosis itself was the easy part for us. The whole "there is something wrong" thing was not easy at all.
There really is nothing like hearing those words.
You don't want to believe them at first.
You tell yourself that everything is fine. Maybe it was a mistake. And anyway, modern medicine is marvellous.
You cry.
You get angry.
You really don't think this is bloody well fair.
But you go on loving your baby.

Personally, I am not a huge fan of labels. I think it is easy for people to get caught up in labelling someone and then suddenly there becomes an expectation placed on that person, and then you wait for that label to be correct.
Does that make sense?
So in the case of WHS. The literature tells us that most people with WHS don't walk or talk. Now if we had sat back and not bothered trying to encourage Ryley, he wouldn't be walking. He can't talk, but he can communicate pretty well in other ways. Even though we have been told he will never talk (due to damage in his brain caused by stinkin' seizures), we won't give up. We will keep giving him the chance, encouraging him to get that brain of his to do what he wants it to.

Labels can be useful if you want to learn things.
The label of WHS, at the very least, means that we can connect to other families, and can give us some insight into the things to look out for.

I guess the things that affected us pre-diagnois were because of the labels that were being placed on Ryley. I had all these medical professionals telling us what was 'wrong'. He had PHPV, he had hypospadias, he had failure to thrive, the list goes on. These were the things that upset us more than diagnosis of WHS. The focus was on Ryley being globally delayed, and, some of the focus was on me, as a young Mum, who must have done something wrong during the pregnancy, or who wasn't taking good enough care of her son.
So many judgements being made by so many different professionals.
It would have been better to put us in a petri dish and poked and prodded us with some tweezers or something.
I felt to bloody exposed!

So, I guess, some tips for the 'What Next' bit.

Everyone is different. Everyone copes differently. Everyone's experience will be different.
  • Trust your instincts. Your gut feeling is usually right, though it can be proven to be wrong! If you don't want a certain test done, or disagree with something someone says, speak up.
  • Ask questions, get a second, third, fourth opinion until you find someone you can trust.
  • Remember that your baby/child is still that little being that needs you to love and protect them. Enjoy them for who they are. They might not be doing the things they are 'supposed' to be doing, but that is ok. Just keep on giving those opportunities and do the best you can. That is all any parent can do.                                                                                                                                       
  • Have someone with you at this appointment if you can.
  • Surround yourself with people that care and are supportive.
  • Acknowledge those feelings of anger, hurt, frustration, devastation. This is a very stressful time. You will grieve and this is normal (and these feelings re-emerge all the time, and this is also normal).
  • Think about how you want to share the diagnosis. Who you tell, and when, will have a huge impact on how you cope.
  • Talk with others in your situation if you can, and when you are ready,  because there truly is nothing like talking to another person who 'gets it' (although it can be confronting at first).
The What Next bit
This will always depend on who you are as a person. Some people like to jump straight into therapy, others like to take some time to understand and come to terms with things. There is no right or wrong way. Be comfortable with you the choices you make. You know your child better than anyone, and you know your capacity to cope better than anyone.
Don't ever be afraid to seek support from people.

So this ends my first week of TMAT. Feel free to comment and let me know what you think. Would love feedback. How was this process for you?

Next week the theme is "Acceptance of People with Disabilitys" as suggested by Melissa. Great topic idea!
Feel free to make suggestions!!

Wednesday, November 3, 2010

Yes, the Victorian government cares

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 also doesn't know what the hell you are showing them).

My project then for this month will be to use this card somewhere.
I will report back.

Tuesday, November 2, 2010

So this will be interesting

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 $150 apparently, so he is exceedingly proud of himself (no, he didn't steal them, just talked to the right person at Dahlsens).

Ok. That's enough boring stuff from me.

Tomorrow will be full of non-boring facts.

Monday, November 1, 2010


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 Jen and I let the kids play around together while we chat (and relax in the water), but this week, I had an idea.
See, I kind of figured out where it all went wrong. Back in week 3, I had been told to put Braeden under the water. Which I did, but I think Braeden kind of panicked.
So guess what good old Mum did today?
Yeah, that's right, I dunked him under water.
The first time he cried and cried and got so mad with me.
Then I went under a few times.
Then I dunked him again.
Round of applause from Jen and me.
Slight smile.
I went under a few more times and then we decided to just play around.
Suddenly, there was Braeden going under the water himself!!!
(You can imagine the praise and clapping that went on!!)

For the rest of the hour or so we spent in the water, he kept going under, blowing bubbles, opening his eyes underwater, and loving it!!!

(Phew just quietly, because boy the whole dunking thing could have backfired).

So fingers crossed, next week, he will be a bit more confident again.
And then David can start worrying about all those early morning training sessions again.
Ellie and Braeden ready to jump in


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