In my previous post, I spoke about my conversation with Mr Peter McLean from FaHCSIA. He informed me that annually there are 100 infants Australia wide, who's parents qualify for Carer Payment. To quote "hopefully there aren't others that need it".
It's been almost a week since we spoke and I am STILL waiting for him to provide an example of an infant who would qualify. Is it that hard to figure out which boxes to tick that add up to the magical 85 points?
I have had so many people contact me in various ways and told me of their personal struggles qualifying for Carer Payments. I am urging you to contact me again at infantsspecialneeds@gmail.com, and I will forward these stories to Mr McLean. Your message can be as long or short as you like.
If you don't have any personal experience, can you please share this blog post, so that as many people as possible have the opportunity to speak up?
Even if the legislation is eventually changed, it will be too late to help us. However, I don't want other parents to be in the same predicament. It's hard enough, having a child with special needs without having to fight so damn hard for assistance.
We all know that there are far more than 100 infants in Australia with 'significant additional needs', I just need to prove it.
- Posted using BlogPress from my iPhone
Monday, 26 March 2012
Wednesday, 21 March 2012
Australia has 100 infants with special needs
Yesterday I finally spoke with Mr Peter McLean from the Department of Families, Housing, Community Services and Indigenous Affairs (FaHCSIA). Mr McLean is the Section Manager for Carer Payments, in the Disability and Carer Payments Policy Branch.
It was apparent very early in the conversation, that Mr McLean had no intention of acknowledging any flaws in the current system. The whole process was revised in recent years and should now be fine n' dandy, thank you very much.
Mr McLean then proceeded to tell me that every year there are 100 infants, under the age of 12 months who's parents qualify for Carer Payment. He said it with such exhuberance, he actually seemed proud of that statistic. When I told him that 100 cases, Australia wide didn't seem a lot, he said "well hopefully there aren't other babies that need it".
Excuse me Mr McLean? Do you seriously think that in a country with a population nearing 23,000,000, there are only 100 infants that have significant additional needs? On average, there are 250,000 babies born every year in Australia. That's pretty darn impressive if only 100 of those babies have special needs. Are you living in the merry old land of OZ Mr McLean?
I agree that the line needs to be drawn somewhere but it's pretty clear that currently the bar is set too high. At the moment, I can choose to work longer hours and pay my rent, or I can spend more time with my son and give him a chance of a 'normal' life. If Early Intervention is the key, why are parents made to wait so long for Government Assistance?
So many people have contacted me and told me of their struggles, I can't stop fighting now. This isn't about Max and I, this is about every family in the same predicament. I have forwarded him our petition and urged him to read the comments.
For the rest of this week, I will be focusing 100% of my energy on Max's birthday. Tomorrow he will be turning 1 and he deserves nothing less than my full attention.
But after that? Watch this space.
- Posted using BlogPress from my iPhone
It was apparent very early in the conversation, that Mr McLean had no intention of acknowledging any flaws in the current system. The whole process was revised in recent years and should now be fine n' dandy, thank you very much.
Mr McLean then proceeded to tell me that every year there are 100 infants, under the age of 12 months who's parents qualify for Carer Payment. He said it with such exhuberance, he actually seemed proud of that statistic. When I told him that 100 cases, Australia wide didn't seem a lot, he said "well hopefully there aren't other babies that need it".
Excuse me Mr McLean? Do you seriously think that in a country with a population nearing 23,000,000, there are only 100 infants that have significant additional needs? On average, there are 250,000 babies born every year in Australia. That's pretty darn impressive if only 100 of those babies have special needs. Are you living in the merry old land of OZ Mr McLean?
I agree that the line needs to be drawn somewhere but it's pretty clear that currently the bar is set too high. At the moment, I can choose to work longer hours and pay my rent, or I can spend more time with my son and give him a chance of a 'normal' life. If Early Intervention is the key, why are parents made to wait so long for Government Assistance?
So many people have contacted me and told me of their struggles, I can't stop fighting now. This isn't about Max and I, this is about every family in the same predicament. I have forwarded him our petition and urged him to read the comments.
For the rest of this week, I will be focusing 100% of my energy on Max's birthday. Tomorrow he will be turning 1 and he deserves nothing less than my full attention.
But after that? Watch this space.
- Posted using BlogPress from my iPhone
Saturday, 17 March 2012
I am not a spastic
Take a moment, to pause and think about the word 'spastic'.
What images came to your mind?
When I typed 'spastic' into google images, this was one of the pictures that came up-
Pretty gruesome yes?
I'm going to admit something, I haven't previously spoken openly about.
Max has spasticity.
If I was to be politically incorrect, I could say that Max is a spastic.
I've never spoken about this with anyone other than our physiotherapist. Not because I'm ashamed to admit it, but because I'm frightened of Max being ridiculed and labelled. Somehow, it feels like if I don't talk about it, it'll go away.
Tonight, I perused a few sites like Urban Dictionary and Yahoo! Answers. I typed into the search engine "what is a spastic?". These were some of the answers-
- It's when a person is mentally retarded
(voted the best answer)
- A complete retard who does not know what they are doing and make weird noises like "Muhhhrreerr"
And here's a joke-
- What do you call a spastic in a wheelchair?
Anything you want. They'll just smile and wanna hug you.
(Don't get me started about the 'r' word either)
The term spasticity, is defined 'related to or affected by muscle spasm'. Spasticity is a symptom of Neurological injury. My laymans explanation, is that the muscles in Max's arm/hand are pulling his arm into this kind of position-
Max's hand isn't as bad as the one in these pictures, but without therapy, it would be. The muscles in his affected arm, pull with incredible strength. A lot of the time, it's virtually impossible to uncurl his fingers. His wrist tends to turn inwards.
A strict regime of stretching and massage, is helping his arm maintain 'normal' movement. But, it's like pushing shit uphill. He adamantly protests when I do his stretches and if he resists, they are impossible to do because his muscles are even tighter. Lately, I've only been able to do it properly when he's in a deep sleep. Enter, the problem of deciding when he's in a 'deep sleep'. I've woken him so many times and then spent an extra hour resettling him back to sleep.
Do you know the arm action that people tend to use when they call someone a 'spastic'? When he cries, he flails his arms around and looks just like that.
Every parent fears that their child will be teased or bullied*. It completely f*cking sucks to know that my baby boy faces a life of cruel taunts, from stupid people. I know, he'll learn to deal with it, just like I will. But it still hurts every time I think about it.
*Although, I once knew a guy called Richard Pullar, I don't think his folks thought too hard about that.
The next time you consider using the word 'spastic' or 'spaz', please stop and think for a moment.
I am not a spastic.
Posted using BlogPress from my iPhone
What images came to your mind?
When I typed 'spastic' into google images, this was one of the pictures that came up-
Pretty gruesome yes?
I'm going to admit something, I haven't previously spoken openly about.
Max has spasticity.
If I was to be politically incorrect, I could say that Max is a spastic.
I've never spoken about this with anyone other than our physiotherapist. Not because I'm ashamed to admit it, but because I'm frightened of Max being ridiculed and labelled. Somehow, it feels like if I don't talk about it, it'll go away.
Tonight, I perused a few sites like Urban Dictionary and Yahoo! Answers. I typed into the search engine "what is a spastic?". These were some of the answers-
- It's when a person is mentally retarded
(voted the best answer)
- A complete retard who does not know what they are doing and make weird noises like "Muhhhrreerr"
And here's a joke-
- What do you call a spastic in a wheelchair?
Anything you want. They'll just smile and wanna hug you.
(Don't get me started about the 'r' word either)
The term spasticity, is defined 'related to or affected by muscle spasm'. Spasticity is a symptom of Neurological injury. My laymans explanation, is that the muscles in Max's arm/hand are pulling his arm into this kind of position-
Max's hand isn't as bad as the one in these pictures, but without therapy, it would be. The muscles in his affected arm, pull with incredible strength. A lot of the time, it's virtually impossible to uncurl his fingers. His wrist tends to turn inwards.
A strict regime of stretching and massage, is helping his arm maintain 'normal' movement. But, it's like pushing shit uphill. He adamantly protests when I do his stretches and if he resists, they are impossible to do because his muscles are even tighter. Lately, I've only been able to do it properly when he's in a deep sleep. Enter, the problem of deciding when he's in a 'deep sleep'. I've woken him so many times and then spent an extra hour resettling him back to sleep.
Do you know the arm action that people tend to use when they call someone a 'spastic'? When he cries, he flails his arms around and looks just like that.
Every parent fears that their child will be teased or bullied*. It completely f*cking sucks to know that my baby boy faces a life of cruel taunts, from stupid people. I know, he'll learn to deal with it, just like I will. But it still hurts every time I think about it.
*Although, I once knew a guy called Richard Pullar, I don't think his folks thought too hard about that.
The next time you consider using the word 'spastic' or 'spaz', please stop and think for a moment.
I am not a spastic.
Posted using BlogPress from my iPhone
Thursday, 15 March 2012
Dear Maxwell
Dear Maxwell,
In a week, you will be turning 1. Such a small number but such a huge milestone. We've (almost) made it through one whole year, can you believe it?
The night, I found out I was pregnant with you, I was petrified. I didn't think I was cut out to be a mum. I was selfish, reckless and completely crap at being an adult. That fear stayed with me, the whole time I was pregnant. I adored you, well before I'd even met you but I was afraid that I wouldn't be able to give you, everything you needed/wanted/deserved.
I need to apologize, for the very first thought I had, when I saw you for the first time. It should have been something like "wow, that's my baby, he is so beautiful". Instead, it was "wow, he looks like a purple, slimy frog". I still feel guilty for that.
I was overwhelmed by the intensity of how much love I felt for you. Love, that made my heart skip a beat every time I looked about you. Love, that made irrational fears seem totally rational. Love, so intense, I was terrified by the thought of something bad happening to you. That love has only gotten stronger and I apologise if that makes me a little crazy sometimes.
For those first 10 weeks at home, we all slept in the lounge room. I know it sounds a bit crazy, but I could only relax, knowing that I wouldn't fall into a deep sleep on the couch. You woke almost every morning at 2am and we watched the Love Boat, while you guzzled your milk. You never slept much beyond 6am, 9pm became a 'late night'.
You've been through more in your first 12 months, than any child should have to endure. You've fought bigger battles than any other (almost) 1 year old I know. It isn't fair and sometimes my heart literally aches because I can't make everything better.
But ultimately, everything you've been through has made you the little man you are today. You are stubborn, determined and strong. You get a cheeky glint in your eye when you're about to do something naughty. You laugh at me, when I'm angry. When I tell you "NO", you think it's hilarious. You've spent so much time around doctors and nurses, you're not at all shy. You're flirtatious with the ladies. You make me laugh every single day, you're such a clown.
Maxwell, in a week you will be 1 year old. In 1 year, you've taught me the true meaning of the word love. In 1 year, you've taught me to be strong and stand up for what I believe in. In 1 year, you've taught me more than the previous 30 ever did.
If I could wish one thing, it would be to make you as happy as you have made me.
Happy Birthday Max. I adore you.
Love,
Mummy
- Posted using BlogPress from my iPhone
In a week, you will be turning 1. Such a small number but such a huge milestone. We've (almost) made it through one whole year, can you believe it?
The night, I found out I was pregnant with you, I was petrified. I didn't think I was cut out to be a mum. I was selfish, reckless and completely crap at being an adult. That fear stayed with me, the whole time I was pregnant. I adored you, well before I'd even met you but I was afraid that I wouldn't be able to give you, everything you needed/wanted/deserved.
I need to apologize, for the very first thought I had, when I saw you for the first time. It should have been something like "wow, that's my baby, he is so beautiful". Instead, it was "wow, he looks like a purple, slimy frog". I still feel guilty for that.
I was overwhelmed by the intensity of how much love I felt for you. Love, that made my heart skip a beat every time I looked about you. Love, that made irrational fears seem totally rational. Love, so intense, I was terrified by the thought of something bad happening to you. That love has only gotten stronger and I apologise if that makes me a little crazy sometimes.
For those first 10 weeks at home, we all slept in the lounge room. I know it sounds a bit crazy, but I could only relax, knowing that I wouldn't fall into a deep sleep on the couch. You woke almost every morning at 2am and we watched the Love Boat, while you guzzled your milk. You never slept much beyond 6am, 9pm became a 'late night'.
You've been through more in your first 12 months, than any child should have to endure. You've fought bigger battles than any other (almost) 1 year old I know. It isn't fair and sometimes my heart literally aches because I can't make everything better.
But ultimately, everything you've been through has made you the little man you are today. You are stubborn, determined and strong. You get a cheeky glint in your eye when you're about to do something naughty. You laugh at me, when I'm angry. When I tell you "NO", you think it's hilarious. You've spent so much time around doctors and nurses, you're not at all shy. You're flirtatious with the ladies. You make me laugh every single day, you're such a clown.
Maxwell, in a week you will be 1 year old. In 1 year, you've taught me the true meaning of the word love. In 1 year, you've taught me to be strong and stand up for what I believe in. In 1 year, you've taught me more than the previous 30 ever did.
If I could wish one thing, it would be to make you as happy as you have made me.
Happy Birthday Max. I adore you.
Love,
Mummy
- Posted using BlogPress from my iPhone
Friday, 9 March 2012
I'm still here
Apologies for my blogging slackness (if there is such a word). It's been crazy busy in this neck of the woods. I've become the sole breadwinner again, after Robs employer ran out of work and had to let him go :( Ironically, due to Centrelink policies and bungles, he can't get any help from the job agency for 3 weeks. *insert expletives here*.
So, my life has again become a concoction of strange working hours, on top of the usual mummy/therapist/political campaigning stuff. Only, I haven't had the time for political campaigning this week. I'm really hoping that I don't lose the momentum I've created so far.
Following the article in the Herald Sun, late last week, I received an email from Jenny Macklin's Office (Minister for Disability Reform). The department have offered me the chance to speak with a senior officer. They are going to 'explain' the Carer Payment Policies to me. I'm not sure when this is going to happen, but I'll definitely be blogging about it afterwards.
Thank you to everyone who has helped me get this far. Thank you for all the encouraging messages, they are helping me to stay strong.
http://www.gopetition.com/petitions/babies-have-special-needs-too/signatures.html
Don't forget to sign and share, if you haven't already! Thanks!
(Max is turning 1 in a few weeks! Holy moly, my baby is growing up so fast!!)
So, my life has again become a concoction of strange working hours, on top of the usual mummy/therapist/political campaigning stuff. Only, I haven't had the time for political campaigning this week. I'm really hoping that I don't lose the momentum I've created so far.
Following the article in the Herald Sun, late last week, I received an email from Jenny Macklin's Office (Minister for Disability Reform). The department have offered me the chance to speak with a senior officer. They are going to 'explain' the Carer Payment Policies to me. I'm not sure when this is going to happen, but I'll definitely be blogging about it afterwards.
Thank you to everyone who has helped me get this far. Thank you for all the encouraging messages, they are helping me to stay strong.
http://www.gopetition.com/petitions/babies-have-special-needs-too/signatures.html
Don't forget to sign and share, if you haven't already! Thanks!
(Max is turning 1 in a few weeks! Holy moly, my baby is growing up so fast!!)
Thursday, 1 March 2012
We made it into the Herald Sun
Our article finally got published in the Herald Sun today!
http://www.heraldsun.com.au/news/more-news/lifes-a-fight-for-little-max/story-fn7x8me2-1226285460678
But they didn't publish our petition details, so here it is again-
http://www.gopetition.com/petitions/babies-have-special-needs-too.html
Thank you to everyone for helping me get this far!!
http://www.heraldsun.com.au/news/more-news/lifes-a-fight-for-little-max/story-fn7x8me2-1226285460678
But they didn't publish our petition details, so here it is again-
http://www.gopetition.com/petitions/babies-have-special-needs-too.html
Thank you to everyone for helping me get this far!!
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