A Blog about a Bloke-living with WHS

The Dream

2012-02-12T15:01:00.000+11:00

I know many of you already know what 'The Dream' is, and over the next couple of weeks, we can finally spill (most of) the beans.

A quick recap for those who have forgotten:
The Dream is basically an idea that has evolved over time as a solution to when Ryley finishes school.
My worry has always been that as soon as he turns 18 years old he will have nothing to do.
Sure, we have 2 options here.
One is a day program type environment.
The other is like a sheltered workshop type environment.
Neither of which I feel will necessarily suit Ryley.
Of course things may change in 8 years time.
But for us, we really felt we needed to create a future for Ryley, instead of just waiting to see what he might be able to do.

I actually have very little faith in the system at the moment too.
I have been discouraged recently at the way I have seen supposed carers treat the people they are caring for
(eg. Not changing someone's nappy for the whole day is just not friggin' on ok?).
I don't want Ryley to be subjected to abuse or neglect within a system that I will be allocated money to pay for.
I refuse to accept that because there are only two options, I have to take them.

So, The Dream has developed and evolved and is now starting to become a reality.

Our plan is to buy a house, a bit of land and slowly turn it into a successful Farmstay Accomodation business. The plan is to make it fully accessible for all abilities (in fact families with children/adults with disabilities will be surprised to see the facilities we will have that will cater for their needs!)
It will be a working farm.
We will produce our own vegetables and fruit and be as self-sufficient as possible.
Ryley will be employed by us, with a paid Carer to help him with his work.

It all sounds a bit utopic doesn't it?
Don't worry, there are plenty of people that don't think we could possibly do this.
Except we can.
And we will.
We sign contracts on Monday for the property that is absolutely perfect for The Dream.

As soon as it is all settled I will take you on a virtual tour.

What a day

2012-02-08T20:21:00.002+11:00

Ryley scared the hell out of me today and I am only writing this because I just need to get my thoughts out.

This morning he had a 10 minute seizure of some description.
I say some description, because it wasn't a generalised tonic-clonic.
His eyes just moved rapidly from side to side, his breathing slowed and his face started to go blue while his body remained limp.
I have never seen this type of seizure before.

He basically vomited before hand, then vomited afterwards for about an hour.

He isn't sick.
There has been no indication that anything is wrong in his body.

All I can think of is could this be hormones???

So all day I have been scared as hell, watching him like a hawk and hoping like hell he doesn't have another one.
I very nearly called an ambulance and if this happens again I will be.
10 minutes is too long.
I should have called one at 5 mins.

Just when you think things are going along fine hey?
BAM!
They turn to shit again.

In amongst all of this, we made progress towards our dream.
More on that another day when I can think straight.

Anyone have any advice on the seizure thing?? I am wondering how the Ketogenic Diet is going to affect Ryley as puberty sets in. Maybe we should go off it.
But then what if that makes things worse and we lose our healthy Ryley.

Really looking for someone to come walk a day in my shoes please.
And then give me some answers ok?

Dear Ryley-Celebrating 10 years

2012-02-05T19:58:00.001+11:00

Well here we are.
At age 10.
Sometimes it used to seem so far away.
Sometimes it felt like we would never quite get here.
But we are here.

You are tall.
You are smart.
You are as healthy as you can be given all the crap happening in your body and brain.
You amaze me, still.

10 years ago today I became a mother. While I was pregnant with you I couldn't wait to meet you. Like all expectant mothers I told you about all the things we were going to do. All the things you could be. I dreamt about the camping trips we would take, about the sports you would play, about just hanging out with (hopefully a few of them) your brothers and sisters.

But some of that wasn't how it was meant to go.

Instead, you arrived in the most traumatic of fashions. I couldn't even hold you for the first two hours of your life. I couldn't even see you for those first two hours.
I was stuck somewhere else in a hospital room, unable to move and desperate to see you.
To hold you.
To breath you in and never let you go.

That moment I first saw you, I knew you were perfect.
I looked into your eyes and somehow knew life was going to be different.
I felt like I needed to protect you more than anything.

Nothing has changed.
Even 10 years later, I still think you are perfect just the way you are.
Our life is different.
And I am fiercely protective of you. After all, I am your loudest voice.

I can't pretend that the past 10 years have been all about strength and wonderful stuff.
Because some of those days have nearly broken me.
They have nearly broken you.
There has been a lot of awfully hard suffering that we have all had to face.

But we have made it.
Together.
You, me, your Dad and your Brother.
Because we love you so so very much.
And are so incredibly proud of you.

Here's to another 10 years. And another 10 years after that.

Happy 10th Birthday my sweet Ryley.

Summer Beach Fun

2012-01-29T20:22:00.003+11:00

We spent Australia day with our friends down at the beach at Warrnambool. It was an absolutely awesome day. We felt more relaxed on that one day than we had felt all holidays!
Nothing beats hanging out with our friends and watching the kids play together.
So here are some snaps from the beach!

Ryley doesn't like the massive ocean in front of him.

Braeden loving the waves

Me and Ryles just sitting up on the beach watching everyone

Cold Braeden

Seriously, I can't help but respond to this.

2012-01-25T18:40:00.002+11:00

Now.
Long time readers will know how I feel about 'Anonymous' comments.
I have purposely allowed people to comment on my blog under anonymous, because some of my friends can't remember their google login's. I am happy for people to comment provided they at least sign their name or something.
I find it hard to respond to anonymous comments because I have no idea who I am responding to.

Anyway.

I have written on this blog several times now in reponse to the Amelia Rivera case. No point in linking, as if you scroll down you will see the posts.

Today, I received this comment in response to my first post on the subject:

AnonymousJan 24, 2012 04:08 PM

Please, please, stop! The criticisms of CHOP, without knowing ANY of the details from the hospitals point of view, has got to stop. It's gotten to the point where, if Amelia does have her transplant performed at CHOP, that none of the physicians and nurses skilled at renal transplants want anything to do with the case. Sad, really....

The reason I feel like I have to respond is because of this sentence:

...none of the physicians and nurses skilled at renal transplants want anything to do with the case."

Say what?

Honestly, anonymous commenter, you are not helping CHOP out here.
And by the way, I am Australian, so my opinion (and you would probably have noticed it if you had cared to read my blog posts properly), is based on the doctor and the social worker and their response and treatment of the Rivera family. I obviously have never been to CHOP.

I am actually really concerned that you feel that the staff at CHOP don't want to help a child who is in a life threatening situation (and surely not because they have read my blog and my alleged criticism of CHOP). This to me is not good enough.
What are they afraid of?
Or is this a general attitude of staff at the hospital?
Up until now, I hadn't heard a bad thing about CHOP. Which doesn't really mean too much, since I live in another continent.

Thanks for stopping by my blog anyway. Perhaps you should read my post entitled Wolf-Hirschhorn Syndrome-Some facts. Then I suggest Quality of Life.

Garden stuff

2012-01-21T18:21:00.001+11:00

I decided to start my garden overhaul today. Remember that one of my goals is to reduce my veg/fruit shopping by 50%. So I took a few photos of some of what has survived my neglect from last year.

As you can tell...not much.

The fruit trees have done well.

And I just harvested about 10kgs of potatoes.

And really, I am just playing around with the new camera. Hopefully my photos will improve as time goes on...!

Pretty much our only corn plant

Braeden desperately wishing the apples were ready

Peas

One of our plums trees

Lemons

Nectarines

Wolf-Hirschhorn Syndrome-Some FACTS

2012-01-19T18:44:00.000+11:00

Kids DO NOT usually die by the age of 2 years old. Yes, it can happen, but that is rare now. Most kids/adults with the syndrome live for well into their 30's, 40's and there is a lady in the US who is 62 years old. She is actually one of the first patients ever diagnosed.
It is a chromosomal disorder which effects the short arm of chromosome 4. It is not caused by drugs, alcohol or poor eating throughout a pregnancy. It is not caused by poor parenting. For 80% of cases, it is something that has occurred spontaneously at conception and is not likely to happen ever again. In the remaining 20% of cases, one of the parents will have something called a balanced translocation. Without going into the genetics too much, it basically means that the parent has passed on the faulty gene at conception. This happened in our case. Something I had no idea of when I conceived Ryley.
Seizures-85% of all children will have some sort of seizure activity. Most grow out of their seizures by the age of 10. Some have a more complex seizure disorder as well. This is the case for Ryley, which is why he still has seizures every day. Most people don't realise he has seizures every day because he has learnt to adapt and protect himself.
Slow growth- Usually mistaken for Failure to Thrive. Kids with WHS simply grow slowly. Ryley was always a tiny tiny kid. When he commenced the Ketogenic Diet to control his seizures and got a PEG feeding tube he gained weight very rapidly for a child with WHS. This is still nothing like a neurotypical child.
Heart, kidney, eye (and other organ) defects. These can occur in some children. Ryley has 6 monthly ECG's to monitor his heart as well as a kidney ultrasound. This is only because he is part of a longitudinal study of the Ketogenic Diet. No other reason. Ryley is blind in his right eye. It is the least of his problems.
Intellectual Disability/Development Delay. Most children/adults with the syndrome at some point will have a diagnosis of ID/DD (whatever you want to call it...just not mental retardation please). It is an interesting term. Usually used to get access to better therapy services, specialised school settings or adult programs or support funding. It is measured by having the child/adult complete a standard IQ test which is verbally based and not adapted to people who can't use verbal language. Ryley was termed 'unmeasurable' when it was time for his IQ test. He therefore apparently has no IQ. I beg to differ.
Some children/adults can talk. If they can't talk they usually find a way of communicating their needs. Ryley lost the few words he had at an early age when the seizures commenced. He has only gotten 2 words back: Mum and Yeah. We don't expect him to ever use verbal language again. But he has developed his own system of communicating.
Some children/adults can walk. We were told Ryley would never walk by an ill-informed medical professional. He started walking at age 7. Many children and adults with WHS do achieve walking, whether it is with a supportive aide or not. It may take them until they are 18, but most will achieve it.
Children and adults with WHS command a presence like non other. They are social, happy beings who love to be around people. To smile, laugh, express their joy at life. Ryley's number one motivator is people. He craves human beings. He reaches out to them, and implores them to meet his gaze. He is often described by teachers at his school as being one of the most popular kids. He has many many friends.

I have written this post in response to some of the utter rubbish I have found floating around the internet. I know many people around the world are keen to learn more about Wolf-Hirschhorn Syndrome and this is a wonderful thing! I am really pleased that people are seeking to learn more.
The reality is that most of the information that is out there is outdated.
It simply doesn't reflect the beauty of our children.

We had the pleasure of hearing from and speaking with Dr John Carey in November last year. He is considered to be one of the world experts on the syndrome. Search for articles written by him if you want accurate medical information.

I am proud of Ryley.
The syndrome doesn't make him who he is.
The medical complexities don't make him who he is.
He is Ryley.
My son.
Who is nearly 10 years old.
I wouldn't have him any other way.

Brothers.

Where to next?

With his cousins.

My Ryley.

Quality of life-can you define it?

2012-01-18T10:28:00.001+11:00

One of the main issues, as I see it, that has come out of the Amelia Rivera case, is the issue of quality of life.
Who determines what quality of life is?
How can we even define it?

My opinion is always going to differ from someone else's, so how it even possible to make this term a useful one? The term itself is bandied around by professionals all the time. Always at the supposed 'core' of what drives medical practitioners and professionals is to improve the quality of the life of someone with a disability, or medical condition. What usually happens, is that medical practitioners attempt to find the best medical solution based on their own personal experience and sometimes back that up with scientific evidence.
It is a clinical approach.

As parents, we are driven by emotion.
For most parents, children come first.
We would risk our own lives in order to save or protect them.
This is where a clash of opinion can occur.

Quality of life versus Quantity of life.
I just simply cannot generalise here.
For me, I will always opt for quality of life which I define as being, free from pain, happy, and able to function.
For me, I expect that Ryley will somehow let me know when his physical body has had enough.
I won't put him through anything I don't think will be beneficial.
But that choice needs to be mine.
It shouldn't be taken away from me.
As a parent, I am the one who is the 'expert' on my child. I am the one who cares for him, loves him and wants the world for him.
And I am the one who would give him quality of life, as well as quantity in any way I know how.
No other person, medical or otherwise, should be allowed to refuse to treat my son based on their own perception of his cognition or medical complexities.
And this is why there has been such outrage amongst the online special needs/disability community.
Lessening the value of another person's life is morally wrong.

There has been opinions expressed about how WHS is a 'heartbreaking disease' (I refuse to post the link to the article, but if you want it, just email me). WHS is NOT a heartbreaking disease. It is not something you catch. WHS is a chromosomal disorder that mostly occurs as a de novo deletion. In our case it didn't. I passed on the faulty genes. WHS is a complex syndrome, yes. There are children who have profound disabilities. But there are children who walk, talk, read, write...Most of all, kids with WHS are happy, social and beautiful and enrich the lives of all around them.

Just 'Cos

2012-01-16T17:02:00.001+11:00

What a response!

2012-01-16T15:09:00.001+11:00

What an unbelievable worldwide response there has been to Amelia's Story. It is heartening to read that people are outraged upon reading the story. This issue will not go away. It will be interesting to read the response of CHOP and see whether Amelia will be able to have the transplant or not.

I think part of the issue that people are having with this, is that it could happen to any of us. I have a child who may be judged as too 'mentally retarded' to be operated on too. I could have a car accident and sustain severe head injuries and have the same judgement placed on me.

No one is immune from this.

Doctors have an incredible amount of power. Too much power if you ask me.
And who gives them that power to decide about people's life?
We do.

Finally, though, a story like the Rivera families one has caused us to question doctors and their opinions.
Maybe, just maybe, they don't know everything.

Most of us who have experienced the medical model of care will attest to the fact that it is cold, clinical, and for people who are meant to save lives, the focus is not actually on the life of the person at all.
Quality of life is a term that is bandied about often.
The truth is, that it seems that only parents are the ones that are actually advocating for an improved quality of life.

I only hope that some change will come from this story. That not only will the doctor and social worker involved be stood down or severely reprimanded, but that darling Amelia will be able to have a kidney transplant. The other benefit might be the awareness about transplants and the importance of being a donor.

Words fail me

2012-01-14T11:07:00.001+11:00

This morning I woke to find a link on my Facebook page.
It sent me to this post here: Brickwalls It is written by another mother of a child with Wolf-Hirschhorn Syndrome.
It makes me angry and sad that in this day and age, we still have to face professionals who view kids with disabilities as not worthy of saving.
A life is a life.
Just because a person can't walk like you, or talk like you, or even eat like you, doesn't mean that they are any less of a person.
Not giving someone life saving surgery because you don't deem them worth it just makes me sick to my stomach. How can a medical professional sit there and 'play God' and refuse a little girl the chance at a longer life?
There are other bloggers too who have written about this.
You can read their blogs here:
Little Something For Me
Kisses For Kaylee
The Adventures of Not Supermom
A Kind Of Crazy
Ellie's Story
Uncommon Sense
Love That Max
(I will add to the links as I can)
Please share and support this family. Already there has been a worldwide public outcry.
You can go here to add your support: Sign the petition
Or jump on Twitter and Facebook and share. People need to be aware of this and need to speak up and say this is NOT GOOD ENOUGH.
Twitter is trending: #TeamAmelia #lifeformia

Dear Braeden

2012-01-13T17:22:00.001+11:00

My darling Braeden,

I can't believe that you are 4 years old today! I realise that you want to be 5 already so you can go to school, but trust me when I say this, you really don't want to grow up too quickly. Once you start school, you are stuck there for the next 13 years. I know you will love that because you love to learn, but you are still my baby boy, and in the blink of an eye you will be an adult.

Dad and I are so so proud of you. You are growing up and becoming such a beautiful kind little man. I have loved watching as you grow and change and I love that we can sit and have a conversation about how things came into existence, or why things work the way they do. Your memory is incredible! You seriously don't forget anything. We are so proud that you are starting to read a little, as well as starting to write letters of the alphabet. We love your drawings. In fact, as I write this, I am staring at a picture you did of our family. David and I are holding hands. And Ryley has his spikey hair. We all have big smiles on our faces.

I have always said that you are the light of our lives. And you are. From the minute you wake up in the morning you are always happy. You usually tell me that you love me first thing in the morning and you have no idea how that makes me feel. You are kind and often help Ryley with things. You include him in everything, yet you aren't afraid to get cross with him when you need to. I love that you have already learnt one of the most important lessons in life: Unconditional Love. I know that you will carry that with you through your life and change the world somehow.

I am excited for you this year as you attend Kindergarten. What a grown up boy you will be! I can't wait to see what you learn this year. I can't wait to watch you as you continue to grow and develop. You are such a beautiful soul. We are so glad you chose us.

We all love you so much Braeden. Happy 4th Birthday.

Mum and Dad xox

Opening his presents this morning

Scary eyes. But the smile says it all. LOVING the dinosaurs!

Can we go swimming now please?

I have a zillion photos on my phone of Braeden pulling faces. He loves looking at himself and captioning his expressions!

Photo interlude

2012-01-06T18:29:00.000+11:00

My camera has died.
Why oh why did this happen right in the middle of holidays?
My iphone is just not going to cut it I don't think.
But I will take some pics and see if they turn out ok.

I have been trying to convince David that I need a good camera (as in a SLR type one).
Hopefully this should help my case somewhat.

We are home from holidays too. The kids have been sleeping even less than they usually do and it is starting to show in their behaviour.
So we are back home from the big smoke.
Braeden has decided he wants to live in the city though.
Mainly he wants to live at the museum with the dinosaurs.
Ryley is happy to be home and wanted to get straight back in the pool.

I will attempt to get some photos up from my iphone later.

Away from home

2012-01-05T17:50:00.002+11:00

Last night as I walked into the supermarket near where I used to live, I decided that I was a bit like a celebrity.

You know.

Coming back to my hometown, shades on, cooler than I was when I left.
Except, I am not a celebrity.
And no one really stopped and stared at me.
Well maybe they might have looked at me funny because I was totally amazed that in Camberwell you don't need to put money in to use a shopping trolley..
Yeah.
I had returned.

We are currently staying at my parents house while they are overseas. Free accomodation and access to every shop under the sun. Got to love that.
My kids are actually loving it too.
Guess that is because they are scoring some stuff too.
And the city is all like big and busy and there are so many weird things to look at.
Like strangers for example.
Braeden names everyone a stranger at the top of his voice.
Ryley tries to kick people or reach out and grab them.
One would think that my children had never experienced life in the big smoke.

We did go to the Museum today which Braeden LOVED.
Ryley, not so much. He found it very boring.

Tomorrow, we will find something equally as exciting/boring to do.

It is extremely nice to be away from home, even if we aren't exactly very far away!

2012

2012-01-01T18:50:00.000+11:00

Is it just me, or is there something really kind of cool about the numbers 2012?
For starters, it is an even number.
Plus, it just seems...well...kind of relaxed.
Or perhaps my feelings on the number are just representative of my current state of mind?

First blog post for the year, and already I am dribbling crap.
It can only get better from here right?

Happy New Year everyone. Hope you all managed to find a way to celebrate.
Personally, I was asleep. This is how I typically spend NYE now. Long gone are my days of partying in the centre of Melbourne or stealing policeman's hats and hiding them in my car.
Oh.
I mean...um...that is a federal offence and I would never have done that while at a BNS (Bachelor and Spinster Ball for those unsure).
No. Not me.
Do I miss those days?
Nope.
I did my time.
Plus, the added bonus is that now I wake up on the 1st of January minus the hangover.
I am convincing you right?

Seriously though, Ryley was still unwell so we had to give the celebration we were going to attend a miss. That is ok. We are used to not being able to go to stuff sometimes. It is just part and parcel of having kids, and in particular, one who is never really 100% healthy.

I think this year will be a much better one. It seems so many people had a rotten year last year and hopefully it can only get better. Or, maybe, we will be better at managing the tough times because of what we have learnt this year.
Who knows.
And really, the days do just keep ticking over regardless of what the date is. So in some ways, I am not sure why we place a big emphasis on it being a new beginning etc blah blah.
There has to be a bigger picture than that.

Meanwhile, it is really really hot here.
Ryley would like to live in the pool. Braeden would like to never put clothes on again.
Summer sure is here!

Things I have learnt this year

2011-12-31T09:35:00.000+11:00

Here we are finally at the end of 2011.

To be honest, this year has totally sucked.
It has been one of the crappest years in a long time.
I am still trying to make sense of some of the things that have happened, and I am still trying to figure out the reasons 'why' we have had to go through them.
Maybe I won't ever know what those reasons are though.

So what have I learnt this year?

I am not too bad at organising stuff. The conference is one example. I sort of did ok with that.
I have some anxiety issues. Not terrible. Not world ending/life imparing stuff. But it does sometimes effect me. Panic Attacks suck too.
I have an incredible husband. I mean. I already knew that. But we are closer and stronger than ever.
Ryley has taught me more about patience this year than ever.
Braeden has taught me to try new things and to find my courage.
I am stronger than I think I am-someone very close to me keeps reminding me of this.
I have wonderful friends who continue to support us year after year.
There is no place like home. It is where our heart is.
I can do anything I dream of. I just need the confidence to do it.

Ok, that is enough. Now for some of the goals for next year. I am only going to share some of them. Mainly the ones that will become part of my blog next year.

Be better at blogging!!! I will have the time and headspace next year to blog my heart away. I am actually aiming to have 100 followers next year. The first time I have ever aimed for anything with the blog really. But I am hoping to reach more people, and spend more time writing about the more..ahem..controversial things that I love to have an opinion on.
Run in the Run Melbourne in July to support 4p Aussie Kidz. I better start training me thinks!
Expand my vegie garden and hopefully be able to reduce my vegie costs by 50%. We managed it in 2010, but this year I just couldn't spend time in my beloved garden.
Start our dream (some of you may already know what this is. For those that don't, stay tuned).
We are really hoping to have no stays in hospital this year. High hopes I know. But fingers crossed.

That will do. We really are aiming to try and spend more time relaxing, enjoying the little things in life. I am going to organise regular respite if I can, because it really is important to have some time out every now and then.

I want to thank all my readers for spending time reading this little blog this year. I know the posts have been sporadic and a little all over the place. I love that my regular readers have spent time commenting and supporting us through what has been a very dark and difficult year. There have been some highlights too of course which included the conference and the joys of watching my kids grow and develop.
I wish you all a wonderful 2012, full of Faith, Hope and Love.

See you next year!!

The inbetween blog post

2011-12-29T18:21:00.001+11:00

So obviously I am going to write a wonderful reflective post about the year that has been and the hopes for 2012.
But right now,here is the inbetween post.
The one where I say how awesome our christmas was and how much fun we are having on our holidays so far.
Kids are relaxed and so are we.

Of course no holiday period would be complete without the obligatory trip to the doctor now would it? I mean, someone has to keep those medical practitioners busy.
Le sigh.

The kids have this really weird itchy blotchy feral looking rash on them.
I had no real idea what it is.
According to the doctor they have a "viral type allergic reaction rash that could be anything, but should clear up within a week".
Well now.
How super helpful was THAT diagnosis?

A bit of claryntyne and some extra stuff for Braeden's ezcema and it should all be fine and dandy.

I guess the good bit is that we didn't actually pay. The kind doctor decided that while he was bulk billing one, he might as well bulk bill the other.
Just as well really, because to be honest, I could probably have told him it was some kind of viral weird rash thingy that will get better soon. Ha!

Anyway.

Here are some pics of the kids. Fishing is one of the main activities for our holidays so far. I actually ate Eel today. Never mind the fact that I totally freaked out when David and Braeden brought them home last night. I pretty much couldn't be in the same room actually.
But Braeden convinced me to give it a try. So I did. Tastes alright actually.
Those slippery little things that look like snakes still freak me out though.

Remembering the year that was...

2011-12-23T15:38:00.000+11:00

I have spent a fair chunk of my day today trying to make this movie. Fingers crossed it works. Though knowing my computer skills, it may not...
The song is "Party Rock Anthem" by LMFAO. It is seriously the song of the year I think. My kids LOVE to dance to it. We listened to it all the way to the Barossa earlier on this year (9 hours of driving). And personally, I don't mind it either, because it reminds me of the all the good times we have had during 2011.

My Braeden

2011-12-19T14:55:00.000+11:00

My little Braeden is quite unwell at the moment and I simply cannot seem to make him better.

As I was lying in bed cuddling him this morning, all that I could think of was the fact that I just didn't know what to do next to help him.
With Ryley, I know what to do 9 times out of 10. The other 1 time I will always go to the doctor. And even then I am usually right with what is wrong and needed to make him well again.

Braeden visited the doctor for the first time a couple of weeks ago. Pretty good going really (first time in nearly 4 years). He had to go to the doctor again on Friday night (well the hospital actually). And to be honest, he probably needs to go again (I think? Fuck. I just don't know).

I have to say that stress is playing a major role here. Braeden was really affected by the craziness of the conference week. And now, even a month later, he is still showing that he is not ok.
I am a social worker right? I should be able to help him through this yeah? I should be able to stop the regression I see happening before my eyes. I should be able to manage the fact that he told me this morning he was worried about Ryley.

Well I can't.

I can't even help him be physically well.

I just don't know what to do next.

Bring on the holidays, some sleep, some time to relax. Hopefully that is all he needs.

Little ball of anger

2011-12-14T09:53:00.000+11:00

That describes Ryley at the moment.
A little ball of anger.
He is tired tired tired.
Something in his body doesn't seem right.
And I don't know what it is.

This morning I wrestled with him for 20 mins. He just didn't want to get dressed.
The look of anger on his face was something I rarely see.

Then when I took him to the bus he was pushing the attendent in the face and trying to pull her glasses off.
(Which is kind of funny, but I promise I didn't giggle...well maybe on the inside).
I have never seen him do that to anybody other than me.

His school concert is tonight and I know he will be nervous. He always gets nervous.
We have a tradition on school concert night where we have fish and chips for tea, then we get an ice-cream on the way home as we look at some christmas lights.
Ryley loves the bit after he has been on stage.
Braeden is beside himself with excitement about the concert tonight.

I hope that some of the anger Ryley is showing me is because he is nervous about tonight and he is tired.
I hope that he has a sleep after school tonight.
I hope that this isn't the start of puberty*. Because god help me if it is.
All I can do is cuddle him, apply some deep pressure and hope we make it through until holidays.

*Kids with WHS are known to start puberty early around the age of 9. Ryley is nearly 10.

Just 'Cos (Christmas version)

2011-12-03T16:46:00.000+11:00

And here we have the annual Christmas tree photos.
We FINALLY have the tree up.

Ryley just put some tinsel on.

Braeden putting the star on

Christmas 2011

Christmas

2011-11-29T18:50:00.002+11:00

How good does my house look?

Ok Ok.
You're right.
There is no way that is my house.
I wish it was though.
Those lights look lovely.
Though I wouldn't like the electricity bill to go with it.

Christmas in our house is an exciting time. I absolutely love building it up for my kids. I love that they believe in the magic of Christmas. It is a special time for them.
We usually start mid way through November.
I put up a few lights, find a few Christmassy things to dot around the house.
This year, we have been drawing Christmas trees and Santa's, and colouring in reindeer pictures.

Braeden has been walking around the house telling me everytime he does something 'good', because Santa is watching him. He has even been telling Ryley not to be naughty or Santa won't come.
I just love watching their eyes light up when they see the Christmas lights. Or when we talk about what we will put out for Santa and his reindeers to eat.
It makes my heart smile.

We have been making Gingerbread Men already and both the kids love to mix and squish the batter. Braeden wanted to create things with the mixture instead of men, so he created a snail and a slug and a 'B'. Ryley helped press the cookie cutter with such excitement!!
It is these moments in time that make everything worthwhile.

This Christmas, it is the Little Things that will count for us. Being able to stop and appreciate the memories we are creating for our kids to take with them through their lives is what truly matters.
For us, this year Christmas is about JOY, PEACE and LOVE.

What does Christmas mean to you?

9.

2011-11-29T18:24:00.001+11:00

I really really need to start blogging again.
My stat counter shows 9 people visited yesterday.
9??
Oh dear.
That is probably the lowest amount ever.

I have lots to share.
Some new achievements from Ryley (despite him still being sick and barely spending anytime at school).
Braeden is busy drawing beautiful pictures and completing puzzles.

David finally has a boat.
And me? Well. Nothing from me.
Yet.
Stay tuned.
Am gonna get writing again...!

2011-11-21T18:29:00.000+11:00

I know I have been missing from the blog in the lead up to the conference.
And I will attempt to rectify that over the coming months.
I have so much in my head that needs to be written down!

Our family is tired at the moment.
Worn down from the year that has been.
Ryley has a subluxation of his toe at the moment which we can't do anything for.
For the first time in his life this morning, he lay down on the couch after his PEG feed and pulled a blanket up around his chin. If he had the words, I am pretty sure he would be saying "I am not going to school today Mum".
Poor kid.
I kept him home of course.
His cough is still bad and he just seems so...tired.

Braeden has finally started eating again.
He pretty much hadn't eaten properly for 2 weeks. Partly due to gastro, and partly due to being out of routine.
He has been so tired that he has been clinging to me and crying out "MAMA!" day and night in such a distressed voice.

Sigh.

Time to take care of ourselves for a little while I think.

AWHSSG conference 2011

2011-11-19T12:15:00.000+11:00

I feel like I have been writing this post in my head forever.
Although it has only been a week since the conference!
All the organisation, the planning, the anxiety...and just like a wedding, it was all over in the blink of an eye.

I truly have no idea where to start in terms of writing this blog post.
Do I start by telling you about the extraordinary families who made their way to our town?
Do I start by explaining how Dr John Carey and his wife Leslie will always hold a special place in my heart?
Should I just fill this post with photos?
Perhaps I could write about the generosity of the volunteers, the people that helped me make this all happen?

I think I might just start by saying that I can't believe that it is all over! For two years this conference has taken up a very large space in our lives. The planning and the fundraising and the making it all come together. As someone who has some anxiety issues (that would be me by the way), I still sometimes can't believe I managed to do it all. Of course, I couldn't have really if it wasn't for Faye, David and Jules.

So how awesome was the conference? Bloody awesome!!
It went a bit like this:
Friday night we started off with our Meet and Greet BBQ. It is a casual way to catching up with each other and welcoming the new families into our group. By all accounts the tucker was good and everyone was excited to see each other! John and Leslie (our guests of honour) also arrived to mingle with us and start to get to know us. Apart from a slight mishap about where they were staying (they didn't know where to go), everything ran smoothly. I started to relax slightly, despite the high temperature that I was chewing Panadol for. It was just wonderful to see everyone again. Very emotional.

Saturday we had our wonderful guest speaker John Carey speaking. He shared with us lots of valuable information and told us about the research being conducted into the 4p- syndrome. Families started having their individual sessions with him. Lunch was plentiful and the kids were happy. We had a parent guest speaker share her experiences about guardianship once her daughter turned 18 which gave everyone food for thought and insight. That night we shared a meal at Sovereign Hill. The food was yummy and the disco was lots of fun! Tired Tired Tired families.

Sunday we listening to Mel speak about 4p Aussie Kidz and she announced that the first round of funding was open Dec 1st. How exciting!!! Mel and Luke have worked so hard and should be proud of what they have achieved. I look forward to supporting them more next year and will run in the Run Melbourne (eek, better start training). We had our AGM and elected Liv to be our president! Well done to Liv, I know she will do a fantastic job!!
Sunday night many families got together for an informal BBQ. We just.couldn't.go because we were all exhausted and asleep.

Monday we had our family day out at Sovereign Hill. That was lots of fun as people panned for gold (some people-not mentioning any names David-refused to stop panning until they got a sprinkling of gold dust).
We then had another informal BBQ.
Ryley, by this stage, was beyond it and he vomited. So we went home to sleep.

So there you have the brief version of how it all went down. We welcomed many new families to our support group this time and I hope they all had a wonderful time. It is always a big step to come along to an event like this. It is a very big 4 days emotionally.

I know I have thanked all the people that helped me through FB. So I won't individually list them all again. But to everyone who helped me make this happen, whether it was through supporting our fundraisers, supporting us, helping us over the weekend...

THANKYOU!!!

There a lots of photos on Facebook at the moment. If you go to the Blogaboutabloke FB page I will tag some photos there. You will have to 'Like' the page to see them though I think! The click on the photos section.

The Conference Post...coming soon

2011-11-18T10:00:00.002+11:00

I promise I will write about the conference sometime over the weekend!
I am still very much recovering from the last two weeks of stress, anxiety and sickness.
Ryley and I are finally back at school and work today and fingers crossed we stay well now.
But more on all of that later!!

I dreamed a dream...

2011-11-01T11:11:00.000+11:00

I cannot possibly even start to reveal what that dream is right now, but stay tuned.
If we can make it a reality, then part of this blog will be dedicated to sharing our experiences.
My heart is absolutely filled with excitement at the possibility that it might work, and somehow, I just know it will.

Aside from that.
Less than two weeks until the conference!!!
I cannot believe it is nearly here!
Everything is organised and we are ready to go.
I can't wait to catch up with all our WHS family, and to welcome all the new families!!

What else has been happening here?
Not much.
My boys have grown taller.
Slugs have been eating my snow peas.

Blogging will feature in my life again very soon!

A night out you say?

2011-10-23T19:14:00.000+11:00

Yes Yes.
It is an extremely rare event. But last night we had our 2ND night out together for the entire year.
Oh imagine our excitement.

Actually.
We were extremely excited, because we were attending the Official Launch of 4p Aussie Kidz.
You can go here: http://4paussiekidz.org.au/ to find out more.
Or you can visit the blog here: http://ellieedayoung.blogspot.com/ to meet Ellie and her parents Mel and Luke.

It was a great night, made greater because we won the slide we wanted in the auction.
Mel and Luke did a great job and it is great to see their dreams coming true.

I didn't get too many photos because my camera sux (I really need a fancy one). But the lovely Liv had her awesome camera and took a couple of us and our poster boys.

Liv took a better photo than this (which is my dodgy one), but for some reason I can't get it on the blog.

PS. Conference in less than 3 weeks..EEK!!

Carer's Week-Again

2011-10-19T11:49:00.000+11:00

So, last year I posted during Carer's week and posed the question: Who cares about the Carer's? I received lots of emails and messages in response to it.

Here in Victoria we are currently 'celebrating' Carer's week. Which basically means we all give ourselves a pat on the back or a 'hi-five' for being so wonderful.

*Ahem*

I think I found one event happening here in Ballarat. And that was it.

There has hardly been any mention of it. Anywhere.

So my questions remains. Except this time I am adding a word or two to it: Who the bloody hell cares about Carer's?

Well, the government does of course. We save them 40.3 billion every single year by taking care of our loved ones ourselves. They do gives us $110 a fortnight in return to help us out. So WOW. That is awesome.

Many people will use their words and express that Carer's do an amazing job. Uh-huh. Yet that is usually the extent of their support. A few words dropped here and there. Ok. Cool. Thanks.

I think the reality is that most people are just glad it isn't them. It is easier to just ignore Carers and figure someone else is probably helping them-or worse-that they are 'so strong' they don't need anyone.
Wrong.
Most Carer's would love more support.
They would jump at the opportunity to have someone help out every now and then. To actually offer and not just wait for the Carer to ask.

Money would be bloody awesome too if you are listening government. Because having to beg all the time for money just to have basic stuff is really not cool.

So this Carer's week, if you know someone who is a Carer, instead of giving them a pat on the back, do what Carer's Victoria are suggesting and buy them a coffee (that would work for me...!!).

In all seriousness, at the end of the day, being a Carer, as well as a parent, is who I am. It is bloody hard work (especially when child who is being cared for vomits most nights in the middle of the night). But I will do it with love and strength for the rest of my life. With or without extra money from the government. With or without respite. With or without anyone caring.

I care about Carer's. I know so many wonderful people who are Carer's. Exhaustion may be their current state, but they are all the most generous and loving people I am priviledged to know.

So do you care about Carer's? How do you show it? Is it a phone call or message every now and then to see how they are? Is it a catch up for a cuppa every now and then? Is it just saying you are there if you need them? I reckon if you do that, then you DO care about Carer's!

Fluffy fluff fluff

2011-10-13T18:49:00.000+11:00

Those that know me very very very well, will know that this is my absolute favourite movie of all time (and Wuthering Heights too).
I pretty much know the movie word for word.
Anyhoo.
I have pretty much been waiting for years for it to come out on DVD as my well loved VCR copy really was just not the same.
So given that it came out today, guess what I went out and bought??
Braeden is currently glued to it.
Ryley never really liked it that much (how disappointed was I??!).
So now all my hopes are focussed on Braeden.
He better love it as much as me.
Bad luck I guess if he doesn't. Because guess what we are watching on repeat from now on???

There are SO many great lines in the movie:
"Cheaters never prosper" (why thankyou for your wise words Zazu)
"Hakuna Matata-it means no worries, for the rest of your days" (Oh if only you were right Timon and Pumbaa).
"Hippity Hop all the way to the birdy boiler" (Oh you hyenas...gimme one of those boilers please)

Anyway.
You get my drift.

Why do I blog?

2011-10-10T19:54:00.000+11:00

I have been thinking about this question lately (despite my lack of blogging). I don't know if I have ever written a post specifically on why I blog.
My blog will never be one of the 'popular' blogs. I doubt I will ever have 1000 followers (I doubt I will ever have 100). And that is mostly because I work nearly fulltime and the only real time I have to write is at the end of the day, and to be honest, I would rather just watch tv, go for a run, or read a book. I don't have the time to dedicate to it. Though sometimes I wish I did.

So who should read this blog?
Well.
Anyone.
I am tipping that most people who read the blog have a child or adult with Wolf-Hirschhorn Syndrome. Then there might be some other readers out there who have a child with a disability and sometimes like to read my thoughts on disability related stuff.
Then I guess there are people who know me in real life and like to ~~stalk~~ keep up with me.
And I guess occasionally my friends and family members have a read to see what we are up to.

Am I some kind of expert?
No.
Far from it.

The real reason I blog is for my boys.
One day I hope Braeden can spend time reading this.
He might at some stage doubt how much I love him and how proud I am of him (I do tell him everyday-but teenagers and all that-ya never know).
But I also hope Braeden can one day say he was proud of our family. That geez our life wasn't exactly 'normal', but it was still pretty good.

I also blog for Ryley. So that one day, when he is grown up and his time on earth is getting close to the end, I can read this blog to him. Remind him of his life. Remind him too, how much I love him and am proud of him.
Remind him that life was always about living.

If something I write helps someone else in some way, then that is just a bonus.
Writing is what I do.

Birthday parties, house hunting and other random stuff

2011-10-09T18:25:00.000+11:00

First post for October and we are nearly in the middle of it.
Eek.
According to my statcounter there are still the occasional reader who pops by.
So thanks for that!

I just don't have the time to blog right now. Which I hate of course. But you all know the reason why I am a little absent from the blogging world right now, so I won't harp on about it.

So what's been happening in our neck of the woods?
Well, lot's of stuff.
It has been the final week of school hols this week, and I got to work the whole week. At first I thought "what a bonus, I don't have to do anything", but that very quickly changed to "geez I wish I could stay home".
Sigh.
Grass is always bloody greener isn't it??

Ryley and Braeden had two of their cousins stay and all the kids had a great time! We went out for tea to Pizza Hut, because really, 3 hungry boys (Ryley-not quite so hungry for pizza) and all you can eat, just go hand in hand I believe.
David took all the boys fishing during the day while I trudged off to work.
Someone has to be the breadwinner I guess.
Seriously though, it was lots of fun and we look forward to having them again another time.

Ryley had a birthday party yesterday for one of his school friends.
For the long time readers of this blog, you will know that I don't particularly like birthday parties. I find them quite hard, particularly when I don't know a single person. Ryley is always the kid with the physical disability whose Mum has to help him participate. He then sometimes gets treated like a baby by other kids and the other parents either feel sorry for me, or ignore me.
Now, Ryley has only ever been invited to two school parties in his 6 years at school.
Which I don't mind at all.
This one was the second one and when Ryley vomited just before it was time to go, I had to admit I felt a bit relieved that maybe I had an excuse not to go.
But when I asked him if he wanted to go, he got up and headed for the door.
So we went.
It was an interesting party.
Most of the kids there were from Ryley's class, so they all knew each other and were clearly really good mates.
I tried my best to just let Ryley be and only helped him when he needed it (like when he got knocked over when on the dancefloor).
Ryley of course had an absolute ball!!
But the thing that I found really strange was that hardly any other parents were there. They just left their child with a disability there, in the care of strangers.
Um.
Wow.
One kid did try and escape many a time, and if I hadn't been keeping an eye on him he would have been gone and we would have had a search party out in the streets of Ballarat.
I just don't get it.
I can understand why some of the higher functioning kids were left. They could at least talk I guess.
Anyway.
Ryley really enjoyed himself and as always I am really glad we went.

So what else in the life of us?
We have been house hunting/dreaming lately about finally moving out of town and onto some property. We have a couple of properties on our shortlist and now all we have to do is finish our house and get it ready for sale.
The question remains of course whether we can actually do it or not.
We love our house.
We love where we live.
Everything here is so convenient.
Moving out of town would mean we could have our hobby farm which is what our heart is telling us we need to do. But our heads are very busy telling us that we have it waay to good here.
So.
Who knows.
Maybe when I win tattslotto, I can just have it all.

In the meantime I have been busy planting all my vegies and we are going to have a bumper crop of spuds again. Our celery is going crazy too which is good. It is the first time we have grown it, so nice to know we can actually grow it.

What else?

Braeden is learning how to write his name. He signs all his pictures now with the letter B.
Ryley's ankle has fully recovered finally and he has actually lost a bit of weight.

OK.
This long post has no just made up for the last however many days of not posting.

Just 'cos

2011-09-27T18:38:00.000+10:00

I know I am only posting very sporadically these days, so I would forgive you, my dear readers, if you lost interest. Countdown is well and truly on until the conference, and every spare minute is taken up finalising, emailing and organising. I didn't really have spare time before, so I literally have not a second spare right now.
Very excited though as I hear from more families who are coming, and watching as things start to come together.

There is never a dull moment in our lives either. Ryley currently has soft tissue damage to his ankle, or possibly a torn ligament. So he is not wanting to walk. I have been carrying him around and my back is just about stuffed. We are waiting patiently for his new stroller so I can transport him around a bit easier. Until then the old faithful stroller is getting a workout.
Poor kid must be in a decent amount of pain though.
Not fair.

So bear with me. Once the conference is over this blog will get a revamp and I will bring in some changes. And I might even post more regularly. Ya never know.

Here a couple of photos.

Looking cool in his footy colours.

I told him the wind was going to change.

A little something for those coming to the conference (volunteers too)

People watching

2011-09-19T21:03:00.000+10:00

I love people watching. Me and Ryley are similar like that. I would happily sit with a coffee and just observe people.
Today I did that.
I had to catch a train down to Melbourne to pick up my parents old car (as we are currently without a second car and kinda need one), and then another train back out of the city.
To be perfectly honest, I found it very peaceful.
I was on my own of course.
Hence the reason for the peacefulness.

But I actually got to just observe people.
And it can be quite funny at times.
I love to just watch their non-verbal behaviour, their body language.
Quite often though, I find myself getting sucked into their sadness.
That is when I have to walk away.
I often have the urge to just butt in and give them the solution.
But I may get my head punched in. And then I am no good to anyone.

Ryley loves people. Always has.
One of his favourite thing to do is just watch people walking past.
I can't wait until I have his new stroller because guess what me and him are going to do?
Yep catch a train to Melbourne and watch people for a while.

Small things ey?

Oh and before I go.

Random Braeden comment #1052: "That bowl is spinning like how the World does"
Me back to him: "Yes and did you know that the world takes a whole year to orbit around the sun?"
Braeden: "Yes"
Me: "Okaaaay then"

He will be smarter than me by the time he starts school.

My overweight child

2011-09-14T18:20:00.001+10:00

For those of you on Facebook, you would have seen my status update during the week about my overweight child.
I was CELEBRATING the fact that my Ryley is officially on the calorie knockdown.
Uh-huh.
My gorgeous WHS child (pictured below) is having his calories cut by 9% because he is a little too tubby.
I am SO PROUD right now!!
Don't forget he is on a high-fat diet (Ketogenic Diet), so he was always going to put on weight. But it is actually music to my ears to not have to worry about him being seen as 'failure to thrive'.

I hate the term 'failure to thrive'. It seems to imply and accuse you of not adequately feeding your child.
Sometimes, just maybe, that child is just meant to be small. Because of his genetic makeup. Not because you aren't feeding him.
And no, I am not bitter at all.
Well.
Not much anyway...!

Aside from that, Ryley is busy recovering still. He is still on antibiotics for the umpteenth time. He is exhausted at the end of the day. But generally pretty happy (when he isn't grumpy, or fighting with Braeden).
I am busy finalising things for the conference.
Spring is on it's way.
Oh. Sorry.
Spring is here in almost everywhere except Ballarat. I have heard it will arrive this weekend though.

Here are some pics of my boys. Ryley is obviously impressed. Braeden is being Braeden. Don't look at the mess in the background. Or the curtains that need fixing.

2011-09-06T17:36:00.000+10:00

Sometimes there are things in life that you know must be happening for a reason. Yet at the time you just have no idea how there possibly could be a reason.
Sometimes you need to look a little deeper to realise that there is always a lesson to be learned during our toughest times.
Sometimes in order to experience and understand peace and happiness, you need to experience difficulty and hardship.

It's wierd, but I recently found my old diaries that I had kept hidden away for over ten years. What an eye opener to say the least. Somehow I have managed to predict some of my future (sure glad I wrote it all down). But the thing that stood out the most was how utterly sad I was during those years. Desperately sad. Unnoticably sad. How I got through those years I have no idea.

I also discovered something absolutely awesome though.
Becoming pregnant with Ryley was the turning point. It marked a new beginning. It was the best thing that could ever have happened to me. It was the point at which my life took on meaning. Despite the challenges I have had thrown my way over the past 9 years, I have never ever reached that desperately sad point again. Ever.

Having a child with a disability is bloody hard at times. But I am so lucky. Lucky that Ryley chose me to be his mother. Lucky that Braeden chose me too. And Lucky that I am still here to tell the tale.

September 15 is RU OK day. You can click on the link here: RUOK

It is to raise awareness of suicide and depression. Sometimes all it takes is to ask someone if they are ok. Listen and let them know you care.
We live in a society that struggles with the idea of community. We are so caught up talking through social media that we often forget how to have conversations in real life.
I urge you to take the time to ask someone if they are ok. Not just on this day, but always.

Sick Sick Sick

2011-08-24T18:17:00.000+10:00

Sorry there has been no update for a long time. Ryley has been in hospital and despite being home, is struggling to fight the virus that is plaguing his little body. He has been a very very unwell little boy.
David has the same thing and I have never seen him so sick. To the point where the doctors were more worried about David at one point than Ryley.
There have been a few other things that have been added into the mix too, which has meant we have basically had the worst week in our lives. Our family hit crisis point about midway last week. We have never been in that situation before. Ever.
A huge thanks goes out to my family and my best mates who picked up the slack and supported us through it all.
We have also had many many offers of help and it is incredible to think that there are people out there who actually care enough to be there when we needed it the most.
I hope that the next blog post sometime in the future will be more positive.
But right now, healing our family is the utmost priority.
It is going to take a little bit of time.

Things I love today

2011-08-11T11:19:00.000+10:00

That Braeden walks around the house and tells me at random times how much he loves me.
That Ryley giggles uncontrollably when he sticks his leg out and trips me over (this is a new game for him)
We have cable (Austar) in our bedroom so we can all snuggle up together and watch Play School when it is raining.
That the kids have loved making a robot out of old boxes and egg cartons and that we have to make improvements to it everyday after school/childcare. It is one awesome robot (it isn't real yet though-still have more work to do).
It is nearly the weekend. Which means catching up with friends and spending time up the bush (allbeit chopping wood, but still, it is fun).

I haven't taken any photos lately, so will try and take some this weekend. What things do you love today?

Sunshine please

2011-08-09T13:22:00.000+10:00

Some of this would be nice around now.
I would like some warmth to go with it too.

A thought provoking post

2011-08-04T13:32:00.001+10:00

Two posts in one day!
Wow.

The reason is because I just read this great post :We are Sisyphus over at Healing and Empowerment. It really resonates with me because somedays it does feel like all I ever do is roll that boulder up the mountain, only for it to fall to the bottom and I have to start again.
But it will always be a task that I will do. With love in my heart (sometimes with complaints, sometimes with sadness, sometimes with an overwhelming urge to let that boulder crush me).
But always with determination to never give up.
I am but one of the few who is privileged to know the value of life itself. To not have to search for meaning.
I hold that meaning in my arms every single day.
Embrace what you have.
Never.Give.Up.

2011-08-04T10:05:00.000+10:00

Sorry for the lack of blog posts. I have been sick (with gastro, yuck-why isn't there an immunisation against that yet?), Braeden has been sick and well. I am just exhausted.
I have nothing interesting to write either.
I will say that the crossroads thing is getting sorted.
I will say that we have had unseasonable (is that the right word?) warm weather here this week which I love. I mostly love the warm weather because it means I am now up to date with my washing (oh get a life!).

I will come up with a better blog post soon.

A crossroads,of sorts

2011-07-28T19:02:00.000+10:00

Have you ever reached a point in your life where you are faced with several paths?
The long one ahead of you is where your heart is telling you to go.
The one to the left is filled with exciting possibilities.
The one on the right causes you to suck in your breath and close your eyes and hope that when you open them, you made the right decision to go down there.

So which would you choose?
Ideally, a combination of all three would be good.

Anyway.
Right now, I choose to close my eyes and sleep.
Because I am tired.
And Ryley is tired and not that well.
And Braeden, is Braeden, and full of energy-always.

The fundraiser.

2011-07-25T19:11:00.000+10:00

Well.
Ya'll know that this is THE blog post that is going to list all the awesome people/companies who have helped us raise some great funds for the WHS conference.
First of all though, let me thank everyone who made the effort to come along to the night. Especially those that travelled from Melbourne, Willaura and Geelong (and anywhere else I have missed!). We really appreciate it!!!
The great news is that we raised a little bit more that what we aimed for which means we can do most of the things we wanted to do.
So.
I will probably forget someone, or some company. But I am trying to make sure I remember everyone. If you see a name listed here and want to know more about them, send me an email and I will pass on the details.

The big auction prizes, kindly donated by:
Tattoo-Peter Mosby
Smith and Will
Paul Kellett
Coates Hire
Collins Transport
Mel & Luke Young
Simon Franc
Michael Walsh

Silent Auction Prizes, kindly donated by:
Torque Power Chainsaw and Mowers
Mobility Plus
Margaret Dridan
Lyn Duncan
Ivy & Jasmine
Westwood House of Silver
UFS Pharmacy Howitt Street
Chris & Noel Doecke
Handmade (Canberra)
The Falconer (Sydney)

Raffle/Game/Prizes, kindly donated by:
Craigs Hotel
The George Hotel
Red Lion bar and bistro
Jodie Fraser
Bakers Delight Sebastopol
South Side Synergi
Ballarat Bearings
Oscars
Sue Lake

Table Sponsors:
TAG Engineering
Collins Transport
Hydrautech
Mobility Plus
Professor John Ozolins
Tattoo (Peter Mosby)
JD's Sports Bar
Coates Hire
Ballarat Lift Truck Specialists
Paul Kellett
Sovereign Caravans
Westwood House of Silver

We have also received a number of donations, and so we give a special thanks to:
Melbourne Concrete Constructions
Vic Mix Concrete
Urban Living Developments
Mauro and Vivian Urban
Real Chai

I know I have probably missed a few, and will try and update as I remember. We have also received many generous cash donations from family and friends and we are extremely grateful for these.
Our next step is to start booking things in and finalising details.

I would like to say a big thankyou to my friend Jen for coming and helping to set up and during the night!

None of this fundraiser night would have been possible without the help of Faye Kricak. She has helped me from start to finish, despite having to face some challenges herself in the week leading up. It was a fun night and a big congratulations to the winning table. It was a very close night, with only 1 point I think between the winner and second place getter.

So now.
The countdown begins.

Sensory stuff

2011-07-19T19:58:00.000+10:00

Do you like my diagram? I drew it myself. Ha! Not really.

I just liked it really because it shows how many sensory points there are within our bodies. My Occupational Therapist friends will probably yell at me for posting a stupid diagram.

But I really want to somehow show people how Ryley's body seems to be at the moment.

He is so ticklish at the moment, that changing him and dressing is even more difficult than it was before.

He is seeking out deep pressure and wants to wrestle and roll over me as soon as he gets home from school.

Partly, I think that is him unwinding himself from a busy day (most of us just prefer to sit and stare at the TV, go for a walk, or have a stiff drink (or is that one just me?).

And partly I think his body is changing a bit. He seems to be able to feel things more at the moment. For example if he slightly bumps himself, he screws his face up as if to say "that hurt". He seems to have more awareness of his body and how it works too. He watches what Braeden does so intently, and his body is trying to mimic the movements. It is actually quite amazing to watch.

I am, of course, using this opportunity to teach him some key word signing, and to help him more aware of his hands and how they work. Not to mention trying to help him connect his body parts and understand how they work.

I am not sure what has caused this change in Ryley's body, but he seems to really enjoy how his body does a bit more of what he wants it to.

(The wrestling is a killer though-he is a lot heavier and bigger than he used to be-not that he thinks he is!)

Just 'Cos-Holiday version

2011-07-13T20:59:00.000+10:00

So given that I am totally preoccupied with the coming fundraiser (AWHSSG Ballarat Conf '11 Major Fundraiser in case you missed it), I am going to be slightly slack here and instead of writing how wonderfully and awesome our time over in the Barossa Valley hanging out with the Doecke Family was, I will simply put some photos up instead.
I will just spend a moment though to share two major milestones that have occured in Braeden's life this week:
1. After 3 years and 7 months, he is completed weaned from breastfeeding!! That sure does look like a long time when I write it like that. He didn't feed to sleep while we were away (which was the only feed he was having), so I took the opportunity not to remind him. When we got home, he requested his 'more', and I told him it had run out. He was not happy. But he isn't protesting much. I am hugely proud of my efforts with breastfeeding. (Just as a side note-has anyone seen the movie 'Grown Ups' with Adam Sandler? There is a 4 year old boy in there breastfeeding and it is very funny the way they address extended breastfeeding. The kids pretty much reminds me of Braeden)
2. He is completely nappy free!! Only 1 bedwetting incident, but he just decided he wanted to wear jocks to bed one day. I was very hesitant despite the fact he was waking up with a dry nappy most days (has been for months). So we are going with it.

OK.
Photos.

Ryley loves to cuddle. Rachael, not so much. Rachael had no choice by the end of the week. She had to put up with the cuddle-a-holic Ryley.

Braeden, Rachael and Ryley discussing the intricate details of how to Wake Up Jeff.

Rach and me practising our queen waving. Ryley not so sure about the dodgy driver.

Mmmm. Marshmallows cooked in the wood heater inside. Nothing beats 'em.

We're Baaaack....

2011-07-11T17:01:00.000+10:00

Yep.
Here we are.
Holiday Week One. Over.
I am just starting to wade through my emails, snail mail and catch up on FB/blogs.
Not to mention the washing and the cleaning!

We basically had an AWESOME week.
As a result I have two very tired boys at the moment who are still catching up on the late nights.

Now, I know you all probably won't believe what I am about to tell you.
But I actually went up in a helicopter on our second day in the Barossa.
I will admit that it wasn't a long flight, which is part of the reason why I actually did it.
The other reason was because Ryley wanted to go up in it and we couldn't all go at once.
I have always wanted to go in a helicopter to be honest, and after my plane experience, I didn't think I ever would.
But I did it.
And I loved it!
Ryley was just amazed. He was speechless with excitement. Something that very rarely happens.
(By speechless, I mean he didn't even do his usual excited noises. He just stretched his arms and legs out and clapped with a huge grin on his face and a look of amazement in his eyes).

Here are a couple of photos of that. Just to prove I actually did it!

Posing before the big takeoff

Braeden now is saving up to buy a helicopter

Not a bad view

The changeover: David, Braeden,Sarah OUT. Anna & Ryley IN

Nervously waving goodbye

See you soon

2011-07-01T11:04:00.000+10:00

As we are heading off on holidays tomorrow, this blog will exceedingly boring for a week. If I get the chance while I am away, I will post some pics.
But for now it will be:

Apologies in advance if you dislike swearing. This just sums up how I feel today.

2011-06-30T13:55:00.000+10:00

Source: None via Anna on Pinterest

Weekend fun

2011-06-28T18:14:00.000+10:00

What a weekend we just had!!
Busy Busy Busy. But so much fun.
On Saturday was my darling husband's attempt to play football after a 2 and 1/2 year break. Turns out he still has it in him. He won a meat voucher for being best on ground or something.
He couldn't walk afterwards. But that was his problem, not mine.
We had quite the gang of supporters up in the old spot near the scoreboard.
The kids had an absolute ball (they got to hang out with the Wheeler kids and a couple of cousins).
It was really nice to see some familiar faces out there. Most people hadn't seen Ryley walking before!
So a big thankyou to the Lexton Football Netball Club for supporting us yet again and helping raise money for the conference (and to those special mates who organised it all).

Sunday I left David at home with the boys while I took off to IKEA to catch up with a couple of WHS Mama's (it seemed like the best thing to do really, it meant I didn't have listen to the moaning and groaning).
I so loved seeing the girls (and master E). Time just goes way too quickly.

Bonus points to the husband too who managed to make me a parma for tea.

Aah. Weekends.

School holidays at the end of this week and we head off to the Barossa. We can't wait!
I am taking both weeks of the school hols off and haven't booked Ryley into holiday program either. I think we need some chill out time (if that is possible). Remind of this post when I am pulling my hair out a day into the holidays ok?

What are people planning for the winter break?? Apart from staying warm of course!

Brothers in arms

2011-06-24T13:05:00.001+10:00

I wish I had a photo to share, but I haven't had the chance to take one.
(Edited to add some photos my Mum sent me after reading this post! Thanks Mum!!)
Lately though, Ryley and Braeden have become inseparable. Braeden has decided he wants to sleep in with Ryley and they cuddle each other until we finally pry Braeden away because he is keeping Ryley awake telling him stories.
This morning, I had to walk away from Ryley as I just.couldn't.dress him. The more I got cross, the more Ryley wriggled and squirmed. When I returned, Braeden was trying to put Ryley's pants on him and telling him that he "had to stop being silly".
I thanked Braeden for his help, but told it wasn't his responsibility to dress Ryley.
It is always a worry of mine that Braeden will think it is his job to do the things that I do. Siblings of kids with disabilities tend to become 'little parents' and this is not the path I want Braeden to take.

If only Braeden had reminded me to pack Ryley's PEG feeds in his school bag...
(Yeah, I forgot to pack them again. How embarrassing).

I love that Braeden just accepts that everyone is different. He will never be a kid that stares or makes fun of others. That is one of the most important lessons you can learn in life I think. And already he has got it.

I am so so proud of my kids and the close bond they share.

Welcome to our new domain name

2011-06-22T14:05:00.000+10:00

So the full transition will take a couple of days, but we are now: http://www.blogaboutabloke.com/ !!!
I am going to attempt (!) to find the archives of http://www.ryley.net/ and transfer them over to here if I can. Ryley.net was our first blog/website years ago. It archived somewhere in the internet library so I am going to hunt it down. I tried to do it last year and failed. So hopefully I can do it this time?!

How did you find this blog?

2011-06-21T20:12:00.002+10:00

I have a hundred and one blog posts running through my head at the moment (usually in the middle of night or early in the morning when I can't sleep).
So, I am going to make an effort to start writing them down.
They may not be cohesive, they may only be dot points, or they may just be pictures. But I will try!

I have been looking back at my statcounter over the past week and just looking at how people get to my blog.
It is very interesting.
For those who don't know what a statcounter is, it is basically just a thingy that logs all the IP addresses and information of people who visit my blog. I don't actually know everyone's IP addresses (well I don't know any of them really), but the thing I find most interesting is the words people type into search engines.
Did you know that most people are searching for ryley's blog, or blog about a bloke, or information on WHS?
Every now and then I get some random search for weird stuff. But usually people are looking for the exact information found in this blog.
Now I find that pretty cool.
Which leads me to wondering how many followers/readers of this blog do I really have? I know people don't often 'Google Follow' and I have no idea how to find out who is subscribed to this blog via RSS. I love that people follow me on Twitter or Facebook.
Anyway.
I will be making some changes soon (I did say that in one of my previous blog posts didn't I?) and am going to move this blog to my own domain again. Bit like when we used to have ryley.net.
I don't write this blog to be one of the 'popular' blogs. I write it for the exact reason people search for it. To educate others on WHS. To have a place for families to read about our life with WHS. And to have a record of our life to hopefully read one day to Ryley and for Braeden to read himself.

So to all the people that read my blog...THANKYOU! Thanks for taking the time in your day to read the words that I write.
I have got very little time to dedicate to the blog at the moment as I am working 4 days a week now and every bit of my spare time is being consumed by fundraising stuff or conference stuff.
But, I do have a few posts up my sleeve, so stay tuned!!

2011-06-17T14:40:00.000+10:00

How boring is this blog right now? Not much being written here is there?
I just don't feel like I have anything much to write about that wouldn't bore everyone to death.
So maybe I will just dot point life for us right now.

Busy fundraising.
Busy organising WHS Conference
Did I mention fundraising?
It's cold. And yes. I do know I live in a notoriously cold place, and not to mention it is winter. But still...Some days I just can't get warm, no matter how long I stand in front of the heater.
We can haz a new car.
I do love my new car. Mainly because it doesn't break down on us. And it is blue. I like blue.
My darling husband is coming out of retirement for a footy match next weekend. Which should be good for a laugh.
Being the celebrity that he is, this one off football game is to help raise funds for the conference. So, if you feel like laughing with me, feel free to join me on the sidelines as I yell encouraging lines such as: "You are too old for this shit"
We go on holidays in 16 sleeps. Barossa here we come!!
I need to do exercise and stop eating so much warm winter comfort food.
Braeden doesn't like pirates.
Ryley has a new game which involves hitting me in the head and laughing hysterically.

Well, that is more than enough dot points to sum up my life. Exciting times hey?

Please pray for Magnolia

2011-06-14T17:18:00.000+10:00

Right now, a darling little girl Magnolia is in a critical condition.
She needs our prayers.

You can read about her here: Magnolia

Hilary, Brian and Toller-please know we are all thinking of you.

Standing up for what I believe in

2011-06-08T19:02:00.000+10:00

As a Social Worker, our pay is basically really bad. Despite the fact that we work with some of the most vulnerable and desperate people in the community, our work is often not recognised.
Every single day, we talk to people, help them and empower them.
Not only is there inequality in pay within our sector, but also between genders.
All too often we are given the line "you do what you do because you love it".
Yes.
Mostly, I enjoy the work that I do.
If I didn't, then I wouldn't be a social worker, right?
But that doesn't mean that I don't deserve a fair and equitable pay does it?
The emotional toll that being a social worker takes on you is one of the hidden costs of the sector.
Without proper supervision and self-care, you will never survive more than 5 years as a social worker.

Sometimes I shudder as I remember the things I have seen.
The things I have been told.
The ethical dilemmas I face.
All on a daily basis.
The constant position I am in, whereby I have to judge.
I have to be assessing you body language, your verbal cues.
I have to be looking at your child, mentally plotting them on the graph of normal development.
As I am talking to you, I am generally already working out some solutions to talk over with you.
I am listening carefully, and making sure you know you are being heard.
I will never pretend to know the answers.
And honesty, respect and empathy are the rules in my book.

I do LOVE being a social worker.
But the stress associated with this job should be reason alone to pay accordingly.
It is Social Workers who will be helping this country through it's Mental Illness crisis.
Because we have the knowledge, and the passion to help people take back control of their lives.

So I will step off my soap box for now.
I really enjoyed going and being part of a over 2000 people standing together in solidarity.
Because I believe we deserve better.

The arrival of our chooks

2011-06-04T16:54:00.000+10:00

We are proud to announce 3 new additions to our family.

Their names are Steve, Hopper/Poppa and Car.

They are all brown and they cluck a lot.

So far, so good. They seem to like their new home and have been busy eating bok choy, zucchini and green tomatoes.

They have threatened to peck Rex's nose if he is so silly as to put it through the wire.

They have already given Charley dirty looks.

They fit in beautifully.

Now to just get them laying and then they can stay.

Braeden wanted me to take a picture of him and Stanley.

All rugged up.

The chook motel at the Taj Mahal

Hopper, Car and Steve

Fundraising shoutout

2011-06-03T14:41:00.000+10:00

Have you noticed I haven't been here for a while? Some people did notice actually. Thanks!
Ryley has been sick, and then he got better and twisted his ankle. So it has been a long few weeks really.
But his foot was better today, in that, he is able to walk on it at least.
So onwards and upwards.
It can only get better from here.

Er...right?

As you all know, our family is hosting the Australian Wolf-Hirschhorn Syndrome Support Group's next conference. Which is in November this year!! We are busy fundraising at the moment and are hoping to raise enough money to pay for Dr John Carey to come out from the US. Our major fundraiser is going to be July 23rd and will be a trivia/auction night. We have already had some wonderful businesses who have donated goods and services, but need a lot more.
So, if you are a regular reader of this blog and may be able to help, or know of someone who could help, can you please get them to email me at dridans@hotmail.com ? Thankyou in advance!!

This fundraising gig is whole new thing for me. It is both daunting and exciting.

PS. Back to regular posting this week. Plus keep an eye out for some changes to the blog. They are coming soon...!!

I will return after these short commercials...

2011-05-26T13:26:00.000+10:00

And also when Ryley is well again..But for now..just consider making a hammertime suit, or investing in a music vest, while listening to tv commercial music and typing on the new electric typewriter.

2011-05-20T17:26:00.000+10:00

I am not quite sure how to title this post.
Today, I kept Ryley home from school.
He has seemed really tired and lethargic all week, and he seems to have a really heavy cold.
So.
I just thought he needed a mental health day.
He was pretty pleased to stay home too.
And he has cheered up enormously.

Braeden has also been out of sorts this week and I had to pick him up from daycare early yesterday. He made a miraculous recovery too once he was home.
(Maybe we all need a holiday..Barossa is where I am thinking!)

Anyway.
None of that information is really relevant to what I want to post about.
Ryley and I were sitting out the front in the sunshine waiting for David to come home this arvo when the kids next door started sitting outside.
Nothing unusual there.
They say 'hey' to Ryles and continued on hanging out.
Ryley watched them for a bit then came back and sat down with me.
What I saw in his eyes nearly broke my heart.
So badly, did he want to jump that fence and hang out too.
But instead.
He had to hang out with his Mum.

It got me thinking.
Ryley is a really social kid. He loves people.
Even today when my friend came over with her kids and they were all playing together, Ryley wasn't able to actually join in. He was part of it, no one left him out, but he was really just sitting there as an observer.
He did eventually just come and sit with me on the swing. Partly maybe because he loves the swing. Partly also because he just can't play those imaginative play games.

Ryley can't talk, so he can't initiate a conversation.
Most kids kind of just accept him and neither spend time involving him, nor do they purposely ignore him.
But I do honestly think he feels left out sometimes.
As kids get older they just don't seem to bother with him.
But the thing is, he is 9 years old. He has been around a long time. Hanging out with his Mum is not exactly the best thing in the world is it?

It must be so hard not being able to talk.
Wanting to speak, to play, to join in.
He is happy sometimes to just sit and watch the other kids running around.
But this afternoon, I just felt his sadness.
Braeden will only include him for a bit longer. He is already starting to tell Ryley to go away.
So what next?
How on earth do I solve this one?? Can I solve it? Or am I just overthinking as usual??

Lanceamus Jones

2011-05-19T18:41:00.000+10:00

Today we got our copy of this story. Lanceamus Jones is a little boy who happens to have Wolf-Hirschhorn Syndrome. This a lovely story with the simple message that everyone is special, no matter what their differences are.
Ryley absolutely loves it!! So does Braeden.
You can order it from here: Lanceamus Jones

Blast from the past

2011-05-17T14:23:00.001+10:00

If you double click on it, it should open in another page and you can see it better!

I know this will be hard to see, but this is my Ryley, aged around 2 and 1/2 years old when he had just started daycare.

How tiny is he???!!!

Despite the fact he has really only been a 'big' kid for a couple of years, I forget how he was always one of the really tiny WHS kids.

So the daycare must have found it somewhere hidden away and gave it to me this morning when I dropped Braeden off.

He didn't mind being in his standing frame when he was at daycare, but when it came to him being in one at home, he hated it!

He still has a Kelly Chair similar to the one in the bottom right picture, only it is a bigger one. He uses it at school.

I know I am bias.

But geez he is a little cutie!!

Can haz something finished.

2011-05-14T19:14:00.001+10:00

So we all know Blogger has some...er...technical issues this week.
I will blame them for my lack of posts. Ok?
Actually, I wouldn't have had time really anyway. I am currently busy organising our major fundraising event for the WHS conference. So, I will plug it at some stage here on the blog. But if you follow BlogaboutaBloke on FB you would have already seen me plug it.

But this post is about the most amazing thing in the world.
Well, maybe not the most exciting thing (it's not about someone coming in and cleaning my house for me), but it is close enough.
We have actually finished some of our renovations.

Now don't all fall over.
I know.
It is fairly unbelievable.
But, it's true.

A little while ago we decided to start yet another project to add to the list of about 100 projects we have going at the moment.
We decided to tear our front study apart and make it into Ryley's room.
That way, the kids could start spending more time in their own spaces rather than ~~annoying us~~ having to be around us.

Ryley picked the colours he wanted his room to be and we think he picked rather well.
It is all completely insulated and newly plastered, painted and carpeted. We did everything ourselves except for the carpet, we had a 'carpet man' come to lay that (much to Braeden's delight, he got to have someone else to ask Why).

So here are some photos.
We think we will one day seriously go into buying and renovating houses.
We just need a few hundred thousand. So if anyone has anything spare like that in their pockets, be sure to send it our way ok?!!!

Ryley making sure he can still see what is going on in the street.

Yep. Just kicking back.

I put this one in for those that know about orbs. Coloured ones are angels right? Doesn't suprise me.

To my boys

2011-05-08T17:21:00.001+10:00

Thanks for the slippers Braeden.

Thanks for the amazing things you made at school Ryley.

Thanks for the plants David.

And thanks for the parma that smells delish, and I am hoping tastes as good.

Thanks for behaving yourself today.

Thanks for giving me icy-pole kisses and arms-around cuddles.

Thanks for the snuggles and the tickle-pickles.

Thanks for making me watch Play School and Dora the Explorer 753 times a day.

Thanks for asking me 'Why' after everything I say.

Thanks for the handleading to the cheese yet again.

Most of all:

Thanks for just being Ryley and Braeden.

No matter what the challenges may be, you both make me who I am today.

I am so proud of you both.

So I thankyou both (and David too),

For making every day Mother's Day.

Horseriding and more moments of excellent mothering

2011-05-03T18:44:00.000+10:00

Truly.
I am the most excellent mother.
Hands up who thinks so.
That silence sure is deafening. It will remain deafening after I tell you all my latest moments of excellent mothering.

It began yesterday when I battled yet again with Ryley to dress him.
Braeden has also decided it would be fun to have a dressing battle with me too. So joy of joys, I battled them both yesterday.
Bus arrived.
We get up on the bus and one of the kids from Ryley's class says "Hey! How come Ryley isn't in his Pajamas?"
Ooooooohhhhhhhh Faaaarrrrkk!
Told the attendant to put Ryley in his seat as I jumped off the bus and bolted inside (I don't think the attendant heard me actually, and meanwhile Braeden was just partying somewhere on the bus).
Ran around like a blind woman searching for PJ's.
Oh. Yeah. That's right.
Don't have any clean ones due to vomit and...er...well...let's just say the pants were not clean.
Grabbed the top he had worn the night before and raced back out to the bus.
Shoved the attendant out of the way, well ok, she moved when she saw me coming.
Changed Ryley's top and clicked him in.
No problem.
Off the bus went on it's merry way.
Only then did I look for Braeden.
"I'm here Mum"
Oh good. Well that's that then.

I have actually forgotten PJ day before. It was only one other time. I can't remember how old Ryley was, but he was at daycare. So I reckon he must have been about 3 years old. I will never forget walking past the window to daycare and looking in, only to see oh my god every kid was in their pajamas.
I actually raced Ryley back to the car and all the way home. Changed him and took him back (probably much to the amusement of the daycare staff).
Later on that day, I get a phone call from the daycare to tell me not to panic, an ambulance was on the way, but Ryley was having a grand mal seizure (generalised tonic-clonic).
That was probably right up there with the worst days of my life.
I am tipping he was so freaked out by the fact that I was so stressed about him wearing his PJ's (confused more like it) that his brain went into overload.
Either that, or he was mightly pissed off with me.

So.
Second moment of excellent mothering.
Same day.
Yesterday.

Ryley came home from school. Seemingly unscathed from only wearing half his PJ's.
Now.
I got my new treadmill delivered yesterday (because it is winter almost, and getting out after tea for a run is impossible).
Cue: two very excited kids.
Me, being the awesome mother that I am, thought I would let them have a go on it.
Set it to the slowest pace and one at a time they had a turn.
They both loved it!
So I thought I would get on and show them a bit of running.
Had just started it a medium speed and turned around to see Ryley's arm caught at the back.
Safety stop immediately and nearly trip over in the process.
Pull Ryley's arm out and there is this massive massive burn on it.
He is holding his arm and just looking at me like what the hell did you do to me Mum.
I panic him as usual and he starts to cry.
Try to run it under water.
Nope, it hurts too much.
Try to soak it in the sink full of water.
No way.
Facewasher.
No.
Crap Crap Crap.

Take him to the hospital.
Braeden starts removing pieces of furniture from the playroom out into the emergency department full of people (I didn't realise until I saw people laughing in his direction).
Ryley makes out like he is fine.
It turns out to be a superficial wound only, but they want to dress it and bandage it all up.

It doesn't seem to be all that painful today, but it was definitely really hurting him.
Poor kid.
Sucks to have me as a mother.
Although his love of movement and all things that vibrate may have contributed to his accident. But he won't admit that.

So after all that shining example of good parenting.
Let me finish off the posts with some pics of the kids riding my sisters little pony Sunny.
Ryley has always hated being on a horse, but for some reason he has decided it isn't so bad after all.
Braeden is quite the natural and listens to instructions and knows how to kick the horse to make it go and pull the reins to stop. He made that poor pony do it a million times.
Hopefully we can make it a regular thing because it is so good for Ryley and his balance and body strength. Not to mention his confidence.
He was pretty good at listening to instructions too.

Exclusion and Government Funding

2011-05-01T16:30:00.000+10:00

Something that has frustrated me lately, not only as a professional working in the disability sector, but also as a parent of a child with a complex disability, is the government's lack of support, or rather, the inequality of support given.
Last year the federal government brought in Helping Children With Autism packages for families who have a child with an Autism Spectrum Disorder under the age of 7. Families are now able to access an extra $12000 to use for extra therapies or equipment. The agency I work for are one of the providers of these packages and there has been many many issues associated with this extra funding.
Firstly, as a professional, I saw an increase in incorrectly diagnosed children. There were a number of families who actively sought a disagnosis of ASD just to get this money, despite the fact they were getting adequate early childhood intervention services. Very sad that families have to resort to that to get adequate help don't you think?
There is now the issue whereby families are effectively 'double-dipping', which means they are accessing both fee for service (through HCWA) as well as free through ECIS. This is currently contributing to longer wait lists for others, not to mention the fact that it is very confusing for families.

Just recently, Fachsia announced a new program called Better Start for Children with a Disability. This program will be similar to the HCWA packages, but will be availiable for children who: have a vision or hearing impairment, cerebral palsy, down syndrome and fragile x.
My first reaction?

WHAT THE FUCK?

Again, we are seeing a clear exclusion of a HUGE part of the population of children with disabilities. Don't get me wrong, I am very glad that there is extra money available for those who have a child with ASD, CP, DS, Fragile X or Vision/Hearing issues. Families deserve it. Children deserve it. It is great to see at least some recognition from the government that more funding is needed.
But seriously?
What about the children with Epilepsy? Rare syndromes? Complex medical issues? Severe undiagnosed disabilities? Children with an acquired disability due to an accident??
My list would go on.

For me, the issue is about the exclusion. The people that are being excluded are the people that need that money too!
I cannot for the life of me understand how this new initiative is going to work. I have encouraged the families that I work with to sign up for it, do whatever they need to do to say 'hey I am eligible'.
But at the end of the day, the issue will be about how to spend the money when they are getting free service anyway.

More funding needs to be put into funding equipment. More funding needs to be put into respite for carers. More funding needs to be put into supporting families right through the lifespan.

For families who have a child with a disability, the constant fighting for things that are basic necessaties can leave you utterly broken down. Why can't we have a fair system that acknowledges the needs of every individual and family? We can only hope that the NDIS addresses this, however, my hopes are not high given the inequality and exclusion that already exists.

This will be my first year participating in Blogging Against Disabilism Day. I plan on participating every year and I encourage regular readers of my blog who have blogs of their own to do the same thing!

Go here Diary of a Goldfish to check out the other posts.

Stay tuned

2011-04-28T13:06:00.000+10:00

This year I will be blogging on May 1st about Disabilism.
For those who want to join in, go to the link here: http://blobolobolob.blogspot.com/2011/04/blogging-against-disablism-day-will-be.html

Easter and the gift

2011-04-25T18:56:00.000+10:00

Because I haven't posted many photos for a while, I am going to make this post fairly photo heavy. I have decided to re-neg somewhat on my no-photo-posting rule. If I start getting stupid messages and spam again, I will just delete them.
The kids had a great easter. Lot's of eggs for their egg hunt, but more importantly, they got books, PJ's and a dressing gown. Plus E. Bunny left behind some of his...erm...tail fluff...so that gave them something to be excited about.
We then went out to David's parents house and took all the cousins fishing. Ryley especially enjoyed the long walk through the old diggers holes.
Me? Not so much due to the fact that I was carrying him!
Bloody good workout though!

I have also included some pictures of the kids new cubby house.
It has been nicknamed the 'Taj Mahal' because it is so big.
We got it given to us.
Yes that's right.
For free.
It is hard to explain how incredibly lucky we feel that someone out there thought of us.
It actually belonged to friends of our next door neighbours. We have only met them a couple of times, once we gave them a heap of plums.
David had to go around to their house and pull it all apart and remove it himself.
That was it.
They wouldn't accept anything at all.
So even though they probably won't read this.
THANKYOU THANKYOU THANKYOU.
Your kindness has made a world of difference to us.
In amongst the stress and caos that is filling our world lately, we have something that makes us smile.

Happy Birthday to Mum.

Easter Bunny Left instructions

Another chocolate!!

Ryley's hunting now

Here Mum, hold this while I pick all these up (note how it is still dark outside-it is only 6am)

The Taj Mahal

Kids loving it!

Good Friday Appeal

2011-04-21T18:39:00.000+10:00

I write a post every year about what the Good Friday Appeal means to us. And this year will be no different.
As regular followers of the blog know, we spend a lot of time down at the Children's.
It is very much a second home to us.
Ryley is a fairly well recognised child down there, which is not neccessarily a good thing!

The thing that I tend to always write about is how fantastic the medical practitioners are down there. The nursing staff are mostly exceptional. Without our team, Ryley wouldn't be where he is today.

I appreciate that it is impossible to donate to everything. But even $1 will help make a difference to fund more equipment and research so that the hospital can continue to save lives and improve the quality of life of those with complex medical issues and disabilities.

It is also a pretty good place to socialise (!!) Nearly everytime I am down there I am catching up with friends over coffee. The place is just comfortable. There is often so much pain, sickness and emotion inside those wards. But there is also hope, comfort and love.

So, please, dig deep and give if you can.

Update on previous post

2011-04-19T10:24:00.000+10:00

Thank you to everyone who offered their support and comments about my previous post. It really helped me sit back and analyse the behaviour as opposed to just getting frustrated.
Here is what I came up with:

Ryley wants to wear underpants like Braeden
Ryley doesn't want to be changed on the floor
Ryley hasn't always finished his toileting when I am ready to dress him
Ryley knows that despite him being in a vulnerable position, he holds an incredible amount of power over me because he can kick me and move his body in such a way that I find it difficult to hold him. He likes to assert himself and have the control.

The solutions?

Change Ryley on the spare bed. He happily climbs up and lays down for me.
Once I remove his nappy, take him into the toilet and sit him down. He currently only sits for about 2 seconds, but it's a start.
I have looked in to using pull ups, but they are not practical at the moment due to the cost. I have an appointment coming up soon with the continence clinic and will enquire about cost effective solutions (ie. what are they going to do to help?!)
I did try changing him standing up in the toilets, but he had too many seizures and it was very difficult for him. So I will keep trying that occasionally as we progress a bit more with toilet training.

I did get kicked in the face again this morning, but I will persist with the changes. Ryley's behaviour in general is pretty bad at the moment, so I am hoping this phase will pass.

Thanks again for all the suggestions! I love how the blogosphere is so supportive!!

Next time

2011-04-15T12:48:00.000+10:00

Next time you wonder why I need to exercise and keep fit, ask yourself if YOU could wrestle a 24kg kid 6 or 7 times a day just to change his dirty nappy.
If I don't keep fit, I can't do the basic things I need to do for my 9 year old child.

Have you ever tried to change a child who locks his body or kicks you with all his strength in your face or chest?
It is not easy.
It leaves me trying to catch my breath.

I can't yell at him.
He pretends he doesn't understand if I tell him to stop.

So tell me.
What is the solution?
I have tried distraction.
I have tried getting him to help me.
I have tried giving him something in his hands.
I have tried my timeout method.

For those who have an adult with a disability who is still in nappies/diapers and is able to kick you, how do you manage it?

Brothers

2011-04-12T18:29:00.002+10:00

Braeden.
He is such a sweet kid.
Tonight, whilst in the bath, David and I hid and listened to the conversation.
It went like this:
B: "I like it when you say Mum Mum Ma Ryley"
R: "Mum Mum Ma"
(giggles between both)
B: "I know what it means Ryley"
R: (smiles) "Mum Mum Ma"
B: "It means you love Mum"
(more giggles and both of them chorusing together Mum Mum Ma")

Ok.
Yes.
There were tears from me.

Blog break

2011-04-07T16:56:00.000+10:00

Another blogging break. Without warning.
My world is chaos at the moment. I desperately need a personal assistant. Or just someone to do everything for me. Because right now, I feel like I simply can.not coordinate another thing.
I have to when I am at work. Because. Well. I get paid to do that.
But in terms of everything else...

So, I am taking a little break from blogging. I have several blog posts that are almost finished so they will go up at some stage over the next week or so.
Unfortunately when life gets in the way, the blogging is the first thing I have to step away from.

Zucchini anyone?

2011-04-01T10:17:00.000+11:00

After the week I have had, I think it is time to lighten up the blog with some funny, witty, fluffy posts.
I probably won't be able to deliver on the funny or witty. But the fluffy I will give a red hot go.

Our backyard is currently being overtaken by zucchini's. We have three different types: Dark Green, Green and light green (you didn't think I would actually know their real names did you?).

At first, the giant zucchini's were great. I would pick a small one to use with tea every night. Letting the two big ones grow until they were big enough for me to stuff.

But then, something happened.
There was rain, there was sun, there was neglect.
And then there was too many zucchini's to eat ourselves. We have given plenty away already. But there are still more!

So.
Seeing as all the cool blogs have giveaways, I am having one too.
You don't even have to enter and hope desperately that you are going to win.
All you have to do is reply to this post and BAM! You got one.

In all seriousness. If you are reading this and want a mega zucchini, or even just a regular sized one. Let me know please. I will even deliver them too you (not if I have to catch a plane though-sorry).

PS. Did I mention that I also have tomatoes, pumpkins, broadbeans and butter beans?

This is my secret garden. So overgrown that it really is a secret.

There is actually a path through there somewhere.

Saldu Dusu (Sweet Dreams)

2011-03-29T10:01:00.000+11:00

It has taken me 3 days to be able to sit down and write this. Three days filled with memories, sadness and finally a sense of peace.

My grandmother, or Ma as we called her, entered eternal life Sunday morning. She was 88 years old and had only been diagnosed with ovarian cancer on Wednesday.
She had wanted to die for many many years.
It became even harder for her when my grandpa died 3 years ago.

My grandmother was a refugee.
Her and my grandpa came to Australia from war-torn Latvia on a boat.
They came to Australia in the hope of making a better life for themselves.
Whilst living in nothing more than a tent in the refugee camps of Uranquinty NSW, my father was born.
My grandpa had to work in Sydney, so my grandma spent a lot of time on her own in an unfamiliar country, without knowing much english.
Can you even imagine it?

They eventually moved to Victoria, and made their home in Heidelberg West, where they lived until they became too ill and frail to live anymore.
When it came to selling that house, I couldn't even bear to go there. I wanted to keep in my head the memories I had as a child who stayed there, had adventures there, and most of all, learnt about my grandparents lives.
I am so lucky to have heard their stories.

My grandma was always the most beautiful woman in the world to me.
She told me she had been a model in Latvia.
I believed her.
She told me all the boys used to try and win her heart.
Embellished truth or not (!!) I loved to hear it.
I especially loved to hear about how her and my grandpa fell in love (despite the age difference!!).

She used to always tell me how beautiful I was too and how I should be an actress or a singer.
Unfortunately I can't sing. Not like Ma. She truly had a magnificent voice.
It's funny though. One of the first things she said about David was that he had a good voice and he should be a singer. She told him he should be on the radio.
She also told him she liked his sausage-which she will never live down! (Ma's english sometimes wasn't that good. And she couldn't understand why her complimenting him for the BBQ sausages he had just cooked her sounded so funny to the rest of us!!)

One of the most significant memories I have is of trying on Ma's ball dresses. I reckon every time I went over there I was itching to get those dresses on! They were just so beautiful, and I could pretend I was a princess, or someone royal. They took me to another place, another time, and I felt grown up. I would drape myself in her best jewellry, and sometimes she even let me wear her lipstick and perfume!!
I don't know what happened to those dresses.
Ma always wanted me to have them.

I used to go and stay at Ma's in the school holidays. I loved it!
Waking up in the morning, I would head out to the kitchen where my grandparents were always up making porridge. They would make me eat a bucketload.
In fact, they would make me eat a bucketload of whatever they served up!
They would talk to me in a mixture of Latvian and English. I could understand both languages. Languages actually come fairly easily to me and I wonder if it is because I grew up listening the the various languages that my grandparents and great-grandmother spoke. Ma would often speak to me in German or Russian.
I have often pretended I couldn't understand what they were talking about, when really I could. They would switch to Latvian if they were talking about me. But I would be listening to every single word.

On my wedding day, Ma was the first person I embraced after the official ceremony was over. I could see how proud she was of me. We didn't need words. I was finally in a beautiful dress, with lipstick and perfume and I was marrying the man that I loved with our precious Ryley.
I was incredibly close to my grandmother. She played a huge part in shaping the person I am today.
I miss her terribly.
I wish I could have seen her before she went.
To tell her one more time that I loved her.
To have her embrace my children, to stroke my hair and tell me if she liked my current hairdo or not.

Saldu Dusu Ma.

Little Brothers and Bloods

2011-03-25T18:58:00.000+11:00

Ryley had to have his bloods done today. You all know how much I hate having to do these.
The older Ryley gets, the worse he is.
He just is so much bigger now, and so much more able to fight me.
He had to have 6 vials taken today. Fasting bloods too of course.

Enter: Clown Braeden.
Clearly this little 3 year old has spent too much time at the RCH.
He decided the only way to help Ryley through this was to act as silly as possible. He knows that Ryley loves it when he 'accidently' trips over and falls to the ground. He knows that Ryley finds it hilarious to watch him bumping into things. So guess what he did?

It truly helped Ryley while he was having most of the blood in his body taken out.

Braeden's reward?
A barcode sticker.

Well, he was excited about it anyway.
(Ryley thought they were daft).

Conference fundraising---------------------------->

2011-03-22T20:28:00.001+11:00

You may notice a little widget I have placed on the right hand side of this blog.
I have been getting emails from people wondering if they can donate money to the conference and I have finally figured out a safe and secure way for people to make donations if they like.
If there are readers out there that would like to make a donation but would prefer to get a tax invoice, please contact me via email (dridans@hotmail.com ) so that I can arrange that through the Australian WHS Support Group.
I would like to say a huge thanks to the people who have already donated. Our major fundraiser is in the process of being organised right now and more details soon on where and what that will be!!

There will be a bombardment of update in regards to the conference very very soon.

Any questions at all please don't hesitate to email me or send me a message through Facebook!!

2011-03-22T18:33:00.000+11:00

Yeah alright.
I better post ey?

What's news?
Well. Nothing much really.
I wrote a couple of draft posts, but decided not to publish them yet.
No idea why.
Just feeling a bit concious about what I am writing on here.
I don't have any reason to be feeling like that. Just feel like I am going through a kind of renewal period and I just don't feel happy with what I have written.
*Yawn*

Speaking of renewal periods (what the hell are they anyway?).
After my massive traumatic plane experience (notice how dramatic it has gotten in the last week), I kind of feel like I need to reprioritise or something.
Aside from the fact I probably need a dose of CBT in regards to plane flying, I could also do with a day at a day spa or something similar. Only in order to...er...renew myself?!
Not really.
A few glasses of champers did the trick.
In all seriousness though, maybe it is the Supermoon that appeared this week. I know I am not the only one who feels a bit like they are stuck between the old and the new. Part of me is searching for something. I am not sure what it is either.
A new job? Some more study? A new house? Nope, none of them I don't think.
Just something.

When I find it, I will get back to you alright?
Until then.
I am off for a run.
Or an attempt at a run. I have got new runners, so therefore, I should be able to just run my 6kms no worries.
You can all stop laughing now.

Panic, Planes and Perth

2011-03-14T15:48:00.001+11:00

I know you all want to know.
So let me tell something about me and planes.
We don't go so well together.
Let me take a deep breath and I will explain (and a gulp of champers too while I am at it).

As you all know we had a wedding in Perth on Saturday. David was in the wedding because it was the wedding of one of his best mates. Someone he grew up with. We wouldn't have missed the wedding for the world. The wedding itself was beautiful. They make a gorgeous couple and we are really happy for them.

Now. Neither David or I have ever flown in a plane before. Correction. David has been in a little plane, but nothing like the normal big planes.
I barely slept Friday night and to be honest, had been a bundle of nerves all week. I had barely eaten or slept all week. It wasn't just because of the plane trip. I was also leaving the boys for the first time (well Braeden for the first time ever, and Ryley for the first time in 5 years).
Everything was going fine, the take off was pretty cool. The gradual build up of altitude was also ok.
Then we reached our top altitude and the plane was just cruising along.
I started to feel strange.
It started with my legs.
They started tingling. It kind of felt like adrenalin mixed with pins and needles and it was running through my legs at a speed that I couldn't control.
Then my arms started. And my body. My head was dizzy and I felt like I was going to both pass out and vomit at the same time.
I couldn't breath.
I clung to David's arm and just barely whispered "Something's wrong".
This went on for around 1/2 an hour before I pulled an air hostess aside and told her what I was feeling.
She was great (full points for Virgin Blue).
She brought me some biscuits, made me eat a bit, made me drink some water and talked to me.
It took nearly another hour for me to calm down fully, but I did calm down.
It was a panic attack and it was fucken awful.

If you haven't ever experienced a panic attack before, it is very very hard to try and explain what it feels like. To lose total control of your body while knowing full well that it is your mind that is controlling everything is frightening. No matter what I tried, I simply couldn't stop my body from shaking and feeling out of control.

I couldn't stop crying when I got off the plane. I was a complete and utter mess. I had no idea how I was going to get back on the plane to go home the next day and it filled me with an unbelievable fear.

For the whole day and night I was a mess. I couldn't eat, yet I was so weak from not eating that it was making everything worse. I was tired too. Exhausted in fact.
You know what else I did? I got on the internet and looked for alternative ways to get home so I didn't have to get back on the plane. Did you know that to hire a car to drive from Perth to Melbourne, it costs a bit over $1100. That's just for the hire bit. Not including the fuel and the motels. It costs $770 for the train from Perth to Adelaide. If I caught the train I would have had to leave Perth Sunday. I would have got to Adelaide on Wednesday. Then I would have had to get from Adelaide to Ballarat. So I was out of alternative options.

You know the one thing that made me get on that plane to get home?
Yeah, you're right.
My kids.
I couldn't bare to not arrive home on Sunday when I told them I would be home.
That was the only reason I managed to physically walk onto the plane.
I knew that every minute I was on that plane, I was a minute closer to seeing my kids.
And you know what?
I was actually ok on the way home.
Rescue Remedy is my new best friend, but hey it helped convince my mind that everything was ok, so I don't care!

I have never been so glad to be in Melbourne before though.
I do want to make mention of some people who helped me.
Firstly.
Jen. It meant so much to have someone to talk to when I was a bawling mess. Thankyou for understanding.
Petra, Mum & Dad. They took such great care of my boys, despite my troubleshooting guide leaving off the one tiny thing that didn't go to plan. Their words of comfort also helped me.
Rocca, Simon, Kerrie. Good to have friends around me when I really needed them! You guys really helped me, even though you might not have known it! PS. Thanks for the beer Roc!

The bottom line is that I survived. I enjoyed the wedding. I did leave early because I was just too exhausted to stay. David had a great time too.

We will go back to Perth next year I think. But guess what?
We will be DRIVING!!!!

How did Ryley's sleep study go? XL

2011-03-09T20:45:00.001+11:00

Gee you have a good memory! It all went really really well!! No sleep apnoea episodes, oxygen levels all good and heart rate excellent too. So no need for further investigation!! Very very happy about that too.
He still doesn't sleep that well, but at least we know that it's not due to his snoring or lack of oxygen!
Good question!!!!!

Ask me anything

2011-03-07T18:19:00.000+11:00

This weekend David and I are flying over to Perth for a wedding. All up we will be away for around 24 hours.
We are both first time flyers.
We are leaving Ryley and Braeden for the first time at home with my parents. Braeden has never been cared for overnight by anyone. He isn't really who I am worried about.
Ryley had overnight stays with my parents heaps when he was younger.
But not since he started the Ketogenic Diet. Not since he is now PEG fed.
Anyone guess what I am worried the most about?

Not the fact that I am personally not-at-all a fan of the thought of flying.
No. Says she who prefers to drive around the countryside in order to avoid being in a plane.

Yeah. You all know me too well.
I am most worried about leaving the kids behind.
What if the plane crashes for goodness sake?
I have taught my parents and my sister how to do the PEG feeds. I have even taught one of my best friends as a back up to the back up plan.
I will write out an instruction manual (no joke, it will actually be a manual by the time I am finished).
So there will not be a single preparation stone left unturned.

So someone tell me why I still feel worried?
I have told David that he might have to go on his own.
He told me to stop being stupid.

Guess he will have to drug me and take me to the airport in his suitcase then.

So much to do

2011-03-04T11:54:00.000+11:00

This week I have felt as though I have been floating. Almost a bit like I have been walking next to myself trying to push my body along.
Braeden has been quite sick this week with a weird gastro bug. Which has meant that I have spent every night this week with barely any sleep. He even went a whole 24 hour period without eating or drinking, although I did manage to get some breastmilk into him. He is now making his way through a packet of icy poles, but hey, anything to rehydrate him right?
Braeden being sick is a whole new experience really. It has been a long time (well 3 years, so not THAT long) since we have had to try and coax fluids into someone. One of the great advantages of Ryley having a PEG is that when he is sick, we can still pump fluids and feeds through. When he has gastro, we can at least keep him hydrated because we can slip little tiny syringes of fluids straight into that tummy of his.
Can't do that with Braeden.

Anyway, he seems a bit better today.

It really is hard to juggle the whole work versus sick child thing hey? David and I played tag team this week with work. We never take days off for ourselves if we are sick. We can't. We have to save them up for when our kids are sick. I guess that is what most people have to do though.

At least the weekend is meant to be nice. That means time out in my garden which has been neglected this week. On the plus side though, there are two massive zucchini's which I will stuff. And my squashes have gone crazy again too. Nothing like a bit of neglect to make things grow!!!

The world according to Braeden

2011-03-02T19:24:00.001+11:00

(Because he is 3 now and he knows)

When Mum grows up she is going to turn into a Spider (a black spider).

Dad is going to be a Tiger

Braeden-Butterfly

Ryley-Buzz Lightyear with two wings

Talia- Butterfly too

Poppa-Butterfly

Nanna-Mouse

Josh-Dinosaur

Petra-Big Monster

Nan-Dog

Grumpy-Butterfly too

Unka Bede-A car

Yes. Braeden took a series of photos. This was one of them.

I did a bad thing

2011-02-28T12:23:00.000+11:00

And I feel awful.

It's the kind of thing I never do.
Ever.

After swimming today, I took Braeden into one of the Disabled/Family changerooms to save time.

I know, I know. I can hear the outrage now. And believe me, I feel guilty as all get out.
The whole time I was in there I was thinking, what if someone comes along and needs it more than me and has to wait because of me.
I think we were in there for all of 7 minutes.

Now, in actual fact, there are four rooms for families and those with disabilities so it does serve for both purposes. So I wasn't actually doing anything wrong.
So why did I feel so bad? I mean, I have gone to use it so many times with Ryley and haven't been able to because of able bodied families using it. I have said nothing. Just patiently waited with a freezing cold child.

I think I felt bad because I really truly believe that there is just not enough facilities for people with disabilites, and I don't think I should have been using it. Even though I wasn't doing anything wrong. But still.

The room itself was actually fairly poorly set out and in actual fact, I couldn't change Ryley in there anymore. It has an average sized change table, which Ryley is too big for, and then a narrow bench, which you couldn't put him on either because he is too big again. He has trouble standing for me to change him. So I am not sure how adults with disabilities manage.
I know the swim centre has just built two more new changerooms and I am yet to check them out. I might do that next week and see if they are any better.

In some ways, I get why they are dual purpose rooms. It is difficult to get kids changed and organised in the public open changerooms. So I do think that is fair enough that families and those with disabilities can both use the rooms. But I don't honestly think that the rooms are really accessible enough.

So yeah, I still feel bad about using the changeroom. But I was sick all day yesterday and still feeling average today and just wanted to get in and out without waiting for a shower or dressing in public.
I doubt I will do it again unless I have Ryley with me.

It's got me thinking though. I am going to start checking out all the "Disability" facilities every where I go. If they are dirty, accessible or not. It might be interesting.

A whole post of nothing.

2011-02-25T12:35:00.000+11:00

Hark the herald angels siiing.

I feel the need for boring posts coming on. Seriously. Either that or I am taking this blog all the way to the shadows of privacy.
I am starting to feel a bit wierd about privacy on the 'net at the moment. I am on the verge of taking down my profile on FB actually. The only thing holding me back is the fact that I am in contact with so many families with WHS. But maybe I can get around that?
Anyway.
Today's fluffy post idea is completely copied from Sunny Side Up. Check out her blog people. It is way awesome.
So here are random thoughts and happenings from the past week:

Ryley has developed a 'snarl'. This means that if he doesn't like what you are saying he snarls at you. Been trying to catch it on camera. But he is too quick for me. Snarl.
The boys and I made an aeroplane out a box last night. We painted, cut and stickytaped for an hour and half. They are so proud of it. I took photos. But I don't plan on putting photos on here much anymore (you know, the whole privacy thing).
Braeden likes to argue with me. Constantly. Conversation generally goes like this: "Mum says No Braeden", to which he replies: "Braeden says Yes Mum". It goes back and forth like this until I walk away. Usually he follows me screaming.
I have my tattoos finally! Yay me. I love them. And want more now. Maybe a big "such is life" across my toned stomach. I can only imagine how that would really look on my not-toned-at-all flab ball of a stomach.
Some days I hate my dog Charley. Like when I leave her inside while I go to the shops and come home only to find she has eaten the pork ribs I had out thawing. She is now banished outside forever.
Finds it interesting that this week, I haven't given my campaign to lose weight a single thought, and have subsequently lost a fair chunk of weight. Hmmmm.
I actually put the bin out this week. Those who have spoken to me this week know what that is all about!!!

Ok. End of boring post about nothing. Braeden has just climbed up on my knee to ponder the meaning of lfie. You know he asked me today if I could get him a haircut because it was too long. So I did. Good parenting right there ya know.

Today I got this question

2011-02-22T09:24:00.000+11:00

"It's funny how you seem to ignore some questions"

This was posted on my formspring page, last night I am assuming.

Not sure which questions I am ignoring. If you have a question you feel I am ignoring, ask me again, either by email, or by commenting on this post.

As I have said before. I am happy to enter into debates with people about the things I write. That is why I put it out there. I do not know all the answers. I am not always right. This blog is about MY experiences. If you don't like it, don't read it. If you genuinely want me to clarify or justify something then please let me know and I will do my best.

Echo Echo

2011-02-21T12:03:00.000+11:00

Did anyone notice I haven't blogged for a while?
Hmmm?

Life, as usual, just got in the way a bit.

Sorry 'bout that.

Never fear though, I have been writing a million blog posts in my head, so they are bound to come out eventually.

Ryley has been sick again of course. So already I have had to pick him up from school early.
Sigh.
It's nothing serious. Just a cold/cough thingy. But you know he didn't have pneumonia all that long ago, and crikey it worries me that this thing will turn into the same thing. I mean, I had no real warning last time, so I am going to be watching that kid like a hawk from now on. Well, more like a hawk with binoculars on.

So what's been happening then hey?
Nothing much really. I am trying to keep off the computer a bit. Amazing how much time one can waste playing stupid facebook games.
I am about to go and light our wood heater.
And yes, it is summer over here. Not that you would think so.
I have been running like a run machine, and am finding that I am actually putting on weight.
So that's really helps keep me motivated (or not).

Um.
What else?
Braeden has decided it's pretty fun to run away from me. He particularly enjoys running next door to see if the chooks have laid any eggs. He also finds it not a problem to race to the cafe after swimming before I can even mutter the words "Braeden! Stop!".
Speaking of swimming, he has been put in a more advanced group this term for some stupid reason. So he is pretty much the least advanced of the group.
Despite my anxiety, he is doing really well, and enjoying the challenge. I don't mind him being the 'worst' of the group really. I refuse to push him, and he is amazing me every week with the new skills he is learning.
Gently does it.
No pressure.
Always wins out in the end don't you think?
And back to Braeden again. That kid seems to have inherited his Grumpy's maths skills I think. He has taken to counting everything (well, provided it only goes up to 10). He also doesn't mind a bit of adding here and there too. Some days he just amazes me with the things he draws or the things he says.
Normal development.
It will never cease to amaze me.

Ryley too, is not immune to my bragging.
I was absolutely overjoyed yesterday to see him nearly doing the sign for 'good'. You know, the fisted hand with just the thumb up. Firstly, he put his hand in a fist. Held it up and then ever so slightly isolated his thumb and moved it up a bit.
WOO HOO!!
I know how hard fine motor movements are for him. I constantly work on that. Every day we practice that sign. Every day I help him isolate his fingers.
It seems to be helping.
I know it seems like such a small thing, but never underestimate the enormity of it!

And finally.
David.
He rode 60kms yesterday in the Ballart Cycle Classic to raise money for cancer research. All up it was 72km by the time he rode to the Lake and then back home again. He didn't train at all. He just did it.
So proud of him.
A big thankyou to those who donated money to him!!

Signing off now to go chop wood.

Trust

2011-02-12T17:34:00.000+11:00

Such a big thing isn't it?
Trust.

Today as I ran around the Lake (yes, thinking AGAIN, can you believe it?), and as I passed by one of the restaurants I saw two adults with disabilities in wheelchairs with two carers. Whether the carers were family members or not I don't know. I don't think they were, but won't make assumptions.

I stopped dead in my tracks to be honest. I had to take deep breaths and compose myself.
I just felt so overwhelmingly choked up and overcome with...well worry, sadness, concern...and this feeling of are those adults OK?
Now.
Keep in mind that these carers were doing nothing wrong at all. They had obviously just come out of the restaurant and were waiting for transport.
I think I just caught a glimpse of how much trust is involved in leaving your child/adult with a carer.
I mean, what if those adults actually wanted to go see the ducks. What if they wanted to do something other than be at a restaurant?

Ryley is non-verbal.
Completely non-verbal.
He can't really say what he wants to do for the day.
This is what gets me the most.
For those people with a disability who can't express what they want...what if their carers are actually doing the complete opposite of what they are wanting?
Maybe they want vegemite instead of jam on their toast.
Imagine a world where you are trying desperately to say what you want, thinking that your sounds are doing just that, only to find that your carers, the people who love you, are doing the exact opposite.
Holy crap.
That sux.

Now, as a parent, who knows all that, how hard is it to leave your child or adult with someone else?
Pretty damn hard hey.
All too often I hear horrifying stories of people with disabilities being abused. It makes me physically sick.
With all that in mind, how do you trust others?
I have to trust Ryley's teachers at school. I have to trust that they won't harm him.
I have to trust family and friends.

But can I truly trust anyone other than David and I?

I shall ponder that on my next run.

Or if anyone has the answer...let me know please!

2011-02-11T10:59:00.000+11:00

It was great to see so many people watching the You-Tube video and commenting on it and passing it on or reposting it to FB or their blogs.
But I have been thinking about it the past few days, and truly thinking about what people would do. I know that everyone who has a child with a disability or a sibling or family member with a disability would stand up and say something. But would other people really feel that strongly that they would? Did my comment at the bottom of the video prompt people to think "fuck off Anna, just because YOU would say something doesn't mean we would". I bet a few people probably did think that (provided you actually did read my blog post).
You know, I actually think that is ok though.
The world is made up of lots of people who are passionate about a cause. Which is great. How else can you bring about change if you aren't actively doing something about it?
I am passionate about disability, and wish that everyone had the same attitude as me.
Earth to Anna...
They don't.
Obviously.

I'm not responding to anything anyone has said by the way. It is just I have been spending time running every night and am starting to use that time to think (instead of trying to remember to put on foot in front of the other and to breath). A few blogs I have been reading lately seem to be writing about a division (of sorts) or heirachy of disability. This irritates me. But I will leave this for another blog post as, despite that fact that it annoys me, it is challenging as the same time, and I need to think more and consider how to present my thoughts.

Anyway, back to my thoughts on the whole What Would You Do thing. I think that in some ways I feel so disappointed in general with the way people treat others with a disability, that I almost expect that people would opt to say nothing. Perhaps it is because they fear confrontation. Perhaps it is because they just don't feel passionate enough. Perhaps they just see people with disabilities as nothing.

It is encouraging though when people (who don't neccessarily have anything to do with or experience with people with disabilities) do say that they would say something. That makes my heart soar.
You know, I tend to always speak up when I see injustices being done. People are so quick to judge others. And I am not just talking about people with disabilities here.

So, this You-Tube video continues to be thought-provoking for me.

What would YOU do?

2011-02-08T19:11:00.001+11:00

I don't usually get emotional about the things I see on You-Tube. But this one struck a chord.

So, what would you do?
I would, of course, be the one who stood up to ANYONE who treated someone with a disability with disrespect. I wouldn't even think twice about it. I would hope that the people who read and follow this blog would do the same.

Dear Ryley

2011-02-05T17:11:00.000+11:00

Well, the day is almost over, and I am writing this at 5:03pm which is the exact time that you entered the world 9 years ago.
It feels like only yesterday that I held you in my arms and just gazed at you in awe.
I will never stop gazing at you in awe.
I hope that you have had a wonderful day today with some our closest friends and family. You spent most of the time on the trampoline, which is pretty much your favourite spot in the backyard!
I know that life can be a struggle for you, and that things are really hard at times. But please know that you are very very much loved, and that your Dad, brother and me are always here to love and support you.
You are growing into a very big kid and your confidence and maturity is really showing now
Ryley, I hope that this year you continue to be happy. Continue to gain confidence, and find ways of doing things your own way, like you always have done.
Your Dad and I are so very proud of you. You are our heart and soul.
Lots and lots of Love always.
From Mum and Dad.

I will get some pictures up later on or tomorrow. Right now I am exhausted! We have been up since 5:30am because Ryley was SO excited about his birthday! He has been spoilt rotten and we have enjoyed a great day today! A big thankyou to those that could make it, and those that travelled!

2011-02-03T17:20:00.000+11:00

Ever got to that point as a parent of a child with a disability where you just feel like you cannot go on another minute without a break of some sort?
Your energy is spent.
You can barely put one foot in front of the other, let alone hold a conversation.
Every time you think of a nappy change, a PEG feed, medication giving, dressing/undressing, lifting, you just feel sick in your stomach.
That is how I have felt today.
Like I just cannot physically move any more.
Like I just can't watch another seizure.
Like I just can't try for the millionth time to understand what Ryley wants.
Like I just can't help him understand why he isn't staying at school today.
Like I just can't look into those beautiful eyes again without feeling like the worst mother in the world.

I have to keep going though.
And I will find the energy to play with the playdough, or draw, or go on the trampoline.
And I will tell Ryley that tomorrow, he can go to school on the bus.
And I will comfort him again after his twenty hundredth seizure.
And I will look into those beautiful eyes and plead with him to forgive me for not being much fun today, and that tomorrow is a new day filled with promise and hope.
And I will tell him that I love him.

Hmmmm?

2011-02-01T12:38:00.001+11:00

Sometimes words that are meant to be comforting, actually end up being anything but.
Today Ryley had his gastroenterologist appointment, and really, it pretty much one of those visits where we are in and out. He is only being monitored at the moment ($125 later).
The doctor is lovely and we have been seeing him since Ryley was a baby, but today he remarked ever-so-casually "I can't believe how well he is...I mean...I didn't think he would be still with us".
Yes, ok, it is great to hear he thinks he is doing well, but really? He didn't think Ryley would still be alive? Not exactly the words I really want to hear thanks.

I agree that Ryley is healthier both nutritionally, neurologically and developmentally by being on the Ketogenic Diet and being PEG fed, but would he be dead right now if I hadn't got the PEG? Perhaps one of the specialists could have alerted us to this a little earlier and encouraged the PEG insertion when he was younger rather than tell me I am doing fine forcing him to eat 10 meals a day. It sure would have made my life easier, not to mention Ryley's.
Anyway.

It proves again to me that those in the medical profession just see my child as a medical abnormality. They see him as Wolf-Hirschhorn Syndrome, not Ryley.

David and I work hard to take care of Ryley. We don't get breaks (ok, we get to go to work, what am I complaining about?), we live with incredible stress, but we will never give up. If I thought for a second that Ryley's health was being compromised, I would do everything I could to find a solution. On the topic of the PEG, I asked my paed every visit (it gets a mention in ever letter of correspondence) whether I thought it would be a good idea to get one. Every time, he said it would only make him heavier and harder to manage.
He was right about that. Ryley is heavier. He is harder to manage. But he can walk now. He can do so much more independently, he is having less seizures. He can keep up with the kids his age almost.

My message.
Trust your instincts.

Ryley is still with us because we will always make decisions based on what we think will achieve the best outcome for Ryley.

Does anyone else get what I am saying??

A mini-break

2011-01-30T19:00:00.000+11:00

It is finally coming up to the last week of school holidays, and I am looking forward to school going back. These holidays haven't been as bad as usual (I even braved places like the Fairy Park and Werribee Zoo on my own with just the kids), but I am craving routine, and I know my kids are as well. There is something very comforting about the routines of the school year.
Does that make me sad?
I keep reading and hearing about how much people have enjoyed their holidays with their kids and how they never want them to end, and I just kind of shrink back and smile pathetically (or is that sympathetically?) and move far far away (to my happy place).
Ryley is ready to be with his mates again.
He is over his parents and little brother. Especially since the little brother has assumed the position of Ryley's voice, and therefore, much to Ryley's amusement, talking for him, picking his clothes, and assigning toys.
Bit like a PA really.
Braeden will work out soon enough that Ryley should be paying him good dollars for all his hard work. The outfit he picked out today was just gawjus darlink. And entirely inappropriate for a 40 degree day.
So cute, it brought a tear to my eye.
They are such good mates.

I decided to surprise David on Friday with a weekend away to Portland. Not one of the romantic kind.
Oh no.
One that contained fishing, beach, exploring stuff, um...beach, fishing, exploring stuff...and...fighting, whinging kids!
How could you resist?
We did have an ok time, despite the lack of entertainment for the kids.
They got sick of chasing seagulls. Bored of fishing (not that I can blame them, I get annoyed when I don't catch anything, especially when I can see the bloomin' things swimming around and eating my bait).
They then got bored of the beach and refused to go in the water.
Even finding shells lost it's appeal.
I did pick up a crab only to remember how allergic I am to them (one stinging face later). Much to the amusement of my husband.

We did end up catching a few fish though which meant Braeden drew fish all the way home in his sketchbook. Ryley caught the first fish so that made him very proud, plus he walked miles on the sand without any assistance, so that made ME proud. Braeden loved the petrified forest and spent a few minutes trying to work out what it was.

So this week we have a gastroenterology appointment, school interview and then....SCHOOL back on Friday. Then it's Ryley's birthday on Saturday. Busy. Busy. Busy.

Waiting patiently at this stage

Hold it like this Ryley

Good catch Ryley! Lucky that one didn't get away..it's so BIG

Ryley wandering on his own

Braeden and Meerkat pondering the petrified forest

Mmmm whiting.

Just hanging out with Mum

PS...

2011-01-26T18:57:00.000+11:00

We are loving eating our garden at the moment. Squash, potatoes, chives, parsley and plums.
I am more inspired than ever to grow, grow grow and spend less at the grocery store. We have also started doing a weekly menu planner and it makes a huge difference, not only to organisation, but also to our waists. It is exciting planning what new meals I am going to try each week.
The kids are loving being in the garden at the moment. Even Ryley!

AUSTRALIA DAY

2011-01-26T18:49:00.000+11:00

Happy Australia Day!
For the overseas readers, this is basically a day where we don't go to work, cook a BBQ (and eat sausages or lamb), drink a fair amount of alcohol and wave our Aussie flags.
We personally tend not to do much other than have a Barbie, or catch up with some friends. We have never been into going out amongst the drunken crowds to watch the fireworks. Not really my idea of fun.
This year has been no different. Some friends dropped in and we had a quiet beer, but that's about it.

I am glad we live in Australia, but I think most people forget that technically we 'stole' this land from the aborigines, so I'm not really sure what we are celebrating. But anyway. I can't wait until we are rich and we can buy the outback station I have been dreaming of (which is in the middle of Australia in case you are wondering). To me, the open plains is where the real Australia is. I don't like the City much, despite enjoying the shopping and the atmosphere of certain places. Even Ballarat is starting to feel too big for me.
But we can't move yet.

Been a while

2011-01-24T18:48:00.000+11:00

Yeah. It has been a while between posts.
I have just been...well...too busy! We are still on school holidays here and they are fast becoming the longest holidays in the world.
We have done well up until now with only a few incidences of whinging (as seen in one of my earlier posts).
But it is starting to get a bit tricky to find things to do now.
But. We will press on. I am working 2 days this week and then the following week we have a heap of appointments so that should fill in some time (oh joy).

Here are some more holiday photos (that way I don't have to bother writing-sorry for the slackness).

Singing Happy Birthday again

The red tyrannosaurus rex birthday cake. As requested by Braeden.

Demolition time!

Um...Dad...I like that it is a Ryley sized door and all...but um..what happens when I grow??

Floods in QLD

2011-01-13T20:18:00.000+11:00

As most people around the world know by now, QLD are currently suffering through some of the worst floods in Australia's history. People have lost their lives and so many thousands of people of lost their homes.
There are several of our WHS families who are living in the flood areas and have sustained damage to their homes. Thankfully, they are all safe.
As a WHS community, we are very close and take great care to look out for each other. We are like an extended family. All of our thoughts are currently with the Rackley family in Murphy's Creek, the Carr family in Ipswich and the MacNamaras who are near Ipswich. Please keep them and everyone else in your prayers.

Happy 3rd Birthday Braeden (Dear Braeden)

2011-01-13T19:59:00.000+11:00

Today, my beautiful Braeden turned 3. Hard to believe it really.
I am so proud of him. He is like a little sponge at the moment, soaking up everything. I will never ever get sick of how quickly he learns things!
He has had a great day today, just hanging out at home playing with his presents, watching some TV, seeing his Nan and Grumpy and..er..helping David plaster.
Every year, as part of this blog, I want to write a letter to each of my boys on their birthday.
Here is this years.

Dear Braeden,

What a year! It has flown past so quickly! I was so excited to see your face this morning when you saw all your presents. I have never seen you so excited before!! You jumped up and down and squealed when you saw all those presents for you.
You have made us so proud this year. We love how you find joy in the smallest things. You ask us about everything and want to learn learn learn. We love how you help your brother, but at times, we know he annoys you, like all brothers do. We don't mind if you two fight sometimes, it's ok, we won't get mad unless you start kicking or hitting too hard. Then you are in trouble!!
I can't believe we are still breastfeeding either! I know you are starting to wean and that you will miss your "more", but you will find comfort in other things and I will still always be here for your cuddles.
More than anything Braeden, I hope you are happy and that you never feel left out. We try really hard to have a balance in our lives and to make sure both you and Ryley have your needs met. So far, so good, but we will probably have some bumps along the way this year as we have so many medical appointments to go to for Ryley. We will always teach you to speak up and tell us if you are feeling left out, or upset. You are both as important to us as each other. We love you both so very much.
Braeden, you are the light of our lives. You bring us laughter, joy and happiness every single day.
We could not be more prouder of you.

Lots of Love from Mum and Dad xxxooo

Finally, here are some pics of the birthday boy:

Small birthday cake only for today. The big one is still to come.

Oooh a fishing rod! Can we go now Dad??

His new bike. Prefers his dinosaur figurines though.

His "castle" as he calls it. Present from Ryley

2011-01-11T19:58:00.000+11:00

Ryley had his first day of holiday program today.
And I admit, I had some tears AGAIN after dropping him off.
(What the hell is with ME??)
It is really hard to drop him off and place him in other people's care. Really hard.
I have been reflecting a bit on this today and trying to figure out if it is just me being stupid, but I don't think it is.
Something I have noticed over the past few weeks of holidays is that I do an awful lot for Ryley without thinking twice. I have only noticed it because I have had to check with David a few times if he has done certain things and it hadn't occurred to him.
For example. Ryley gets extremely sweaty when it is hot. In fact, he gets extremely sweaty just when he is excited about something or exerts himself.
Automatically every morning, I put a powder under his arms because he gets a sweat rash. The powder keeps him comfortable during the day. David has been dressing him each day, and I have found myself (irritatingly so I am sure) rechecking and then reminding David about the powder. By the time I check everything, I might as well have dressed him myself (and quite possibly have been told that too...ha!).
I have been thinking of writing out a list of everything Ryley needs to be done every day, but think it would be too exhausting to think about.

When I picked Ryley up today from his day out, he had a dirty nappy which hadn't been changed all day. In all fairness, he must have done the dirty nappy while travelling on a bus, so it would have been difficult to change him, but in 6 hours, he still has a wet nappy.
It is reasons like this that makes me hesitant to let him go anywhere.
I know that I think of everything. I constantly check him. Make sure he has his drink, doesn't need a nappy change, isn't covered in sweat rashes from head to toe.
The thing is, he can't tell anyone. He just has to grin and bear it. Until he gets home. Then he crumbles in a heap and sobs while I change his irritated bottom.
(Before anyone asks, I didn't get a chance to tell anyone about the nappy. I will tell them Friday when he is next at the program. The people who run this program work at the same agency I do and they are fantastic at what they do, and I know will appreciate me telling them, and will make sure it doesn't happen again. So I don't want it to seem as though I am criticising them at all, because they do an AWESOME job).

Off topic a bit, tonight David and I noticed under Ryley's arms what looks like the beginnings of hair growing. I know the research suggests that people with WHS often start puberty early, but really? I guess Ryley is 9 next month, so it is possible. Is there anyone out there with an older WHS boy who can help me out here?? Guess I will put that question down on my list for Dr Carey!

So back to my topic of why I am so nervous about allowing other people to care for Ryley.
I just am.
I am his mother.
Part of my job is to protect him.
But part of it is also to allow him to live his life. Which is why I will keep sending him to his holiday program.
He loves going.
He saw two of his mates from school and went straight up and said "hi" (well, not a spoken word, but a wave). He is comfortable around his friends. He just likes being around people full stop.
I could never take that away from him because I have worked so hard to help him achieve that level of independence, so despite my stupid fears and worries, I need to ignore them and not let him be affected by them.

You should have seen the look he gave me when he saw me waiting for him. It was a mix of embarrassment and utter anger. If he could talk, his look would have said "Piss off Mum, I'm not ready to go home yet".
That is enough for me.

Just 'Cos

2011-01-10T10:56:00.000+11:00

Haven't done a Just 'Cos for a while so here is a few pics from our Summer fun so far!

Trampoline fun with cousin Talia

Ryley and Braeden ready to go to Ryley's school concert

Creating art pieces for Nan and Grumpy

Practising to be in Australia's Test Team

Santa has been!!

Enjoying the wading pool.