Yes, that means you struggling with your disabled young one and going cap-in-hand to a respite service & being told, there are people out there worse off then you and you should be lucky for the scraps we throw your way.
WELL NOOO, I AM NOT GRATEFUL.
In fact not only am I not grateful - I think the Government, services & others need to be grateful for me and the job I am doing!!!!!
I gave up a well paid job to purchase a business 12+ years ago, because our Government didn't provide childcare to families once the children go to high school.
Not even to special needs children.
This left me, as a single mum of 2 children, with 3 options:
1. Continue working at my job & leave my 12yo Miss Chloe (who has Ds)
home alone for up to 4 hours.
2. Go on the Carers pension full time (and live below the poverty line)
3. Find a way to work from home.
I chose option 3 & have been fortunate enough to have had my little business for 12+ years now. This option has given me the opportunity to be home for my children BUT I have never, ever made near the money I was making in the work force.
"This year, including everything,
I have made under $30,000."
Now I ask anyone out there.....would you look after my special needs child full-time (including feeding, taking to recreational things, holidays, clothing....EVERYTHING for $30,000?
The obvious answer is NO!! No-one would do the job carers do for approx $25500 PA
(the pension) YET people seem to think carers are sucking the life out of society.
Think again, peoples...we actually save the Government & everyone
approx $10 million a year in Victoria ALONE!!!
"Sadly for us though, we are treated like a pest and leech by most services."
I was informed by the Guardianship board when Miss Chloes dad killed himself that "CARERS ARE CONSIDERED GUILTY TILL PROVEN INNOCENT".
The reason being that SOME carers do the wrong thing by their disabled loved one.
Now I don't disagree with this...carers are part of the human race & yes, there are some unsavory characters amongst us (as there are with everyone) BUT why is it that, some non carers who do bad things in society - are considered INNOCENT TILL PROVEN GUILTY????
I am not the Lone Ranger when it comes to asking for basics, just to be told that I am not desperate enough & I 'look like' I am doing fine...and "there are people out there worse off them you." WELL REALLY, I am fully aware there are people out there worse off then me BUT I can promise you, if I don't get some kind of help, I will be one of those WORSE off people.
Is this truly the way we should go?
Only assisting in crisis only
creates more crisis
and much more cost
to society in every way!!!
I am exceptionally proud of the job I have done & do with my girl, with absolutely no family support. I will never ever accept anyone telling me I am not entitled to assistance or I don't deserve, because I KNOW I am an amazing human being, doing an amazing job helping my girl be the very best person she can be.
CARERS UNITE AND STOP LETTING SOCIETY TELL YOU HOW GRATEFUL YOU SHOULD BE FOR NOTHING!!!!!
WE ARE THE HIDDEN HEROES OF THE WORLD....AND I DEFY ANYONE TO PUT THEIR HAND UP TO BE PAID $25,000ISH PER YEAR FOR A 24/7 JOB!!!!!!
HERE LIVES ONE PROUD & PASSIONATE CARER!!
There are times when the medical professionals make my blood boil..with the things they say or assume, when you say your young person has Ds!!!!
Today has been on of those times.
I had to take Miss Chloe off to s specialist in diet & nutrition. She is absolutely delightful and respectful and informative and heard me when I say "I don't speak for Chloe...ask her yourself please"
..as an aside....why do people usually ask us things about our children when they are standing there and are perfectly capable of speaking for themselves?
I always just stick my thumb in Chloe's direction & quietly say...."she's just there...ask her....."
Anyways, I digress......This lovely, very very highly paid specialist gave me a referral for a sleep clinic for Chloe. On this referral was 'Downs Syndrome' OMG!!!! Am I wrong to think when I am paying $350 for half an hour that she should not only know how to spell the thing, but also the correct terminology?
I politely asked for her pen, crossed out the 's' on Downs & made the 'S' a little 's' on syndrome. I explained to said lady that Dr. Down doesn't own the syndrome - it was named after him & his name is DOWN. I then politely explained that syndrome is NOT a part of the title....just a syndrome.
To her credit, she listened, apologised, learnt and changed her error on all the other forms. As I said to her, "we learn something new every day"...just wish it wasn't the bare basics of Ds that need to be taught to these medical professionals, grrrrr.
Let me say, this didn't really get up my nose.....no....that honor was reserved for later.
After dropping Chloe back at her work & coming home, I received a call from the hospital for the sleep study. A whiny voiced woman called to speak to Chloe about booking her in.
I told her I would be happy to book her in. Off we go, agreeing a suitable date and filling in the personal details. She wanted Chloe's contact number, so I told her I would give her mine, as Chloe has Down syndrome.
Weeelllll, that's when things strongly shifted to the powerful negative....the whine almost became a screech,as I get....
Whiny woman: So are you staying with her?
Me: No, she will be fine
Whiny woman: Are you SURE she will be OK on her own
Me: Yes, I am POSITIVE she will be fine on her own
Whiny woman: Well you have to understand (those words ALWAYS set me off)
there are only 3 staff on, so they can't look after her you know...
THIS SET ME OFF LIKE A
Very cranky Me: Listen LADY, she has Down syndrome...she isn't an imbecile!!! She is a perfectly capable woman who looks after herself. And it is very insulting to assume I would leave my child if I didn't believe she will be fine. How dare you assume there is something bad wrong with her, just because she has Down syndrome!!!!
Me again: Could you please tell me of a motel near the hospital, so I can be close to collect her in the morning?
Whiny woman: No...look up Google CLICK (hangup)
Just another day dealing with ignorant people in the medical profession.... Now where is that brick wall I need to bang my head against.....
WOW, WOW and even more WOW!!!!
This is the only word I can find to describe my very first forum for people working within the disability field in Melbourne. I was going to say Australia, but told myself, small steps to success & change are best steps...sooo, watch this space in time to come to read about how the winds of change have blown into other States...
The Inspiring Services-Empowering Clients was a truely inspirational forum, with 3 speakers who were all completely different, yet all shared the same passion and courage...courage to look change in the face & say:
'I'm comin' for you'.
For those of you who were there, we will be posting videos shortly, of the speakers as a memory jolter for any info you missed, and for those of you who missed out, they will be a great experience to listen to.
Miss Chloe and Miss Hattie manned their table, selling Chloe's ceramic cupcakes and delivering smiles.
At one stage, I looked out from the lectern (before calling all to be seated) and was thrilled to see almost everyone talking to someone from other service apart from their own. This is my dream!!! To connect us all and I decided then & there that participation is the way to go.
The beautiful catering was supplied by a business called Tastyaz,
www.tastyaz.com.au Check out their website. They are a new business that provided training, work experience and pathways to employment for young people with disabilities. AND the food & presentation were 100% class!!
Our next step is to create an interactive resources and networking website for ALL people within the disability sector - services and families & clients.
This is already well under way....so keep your eyes out for that one!!
As with my book launch, I aim to provide all involved with a positive experience with disability and I believe we pulled this off, as the feedback forms were very, very positive and encouraging!
So onwards & upwards I say, as I stride off into the sunset with my wand held high and my group of powerful inspirational change makers...
And with you - you, yes...striding beside me!! Jump in & join us by getting me to come & inspire your organisation...or better still your area by bringing together a group or organisations. Contact me at: partofchange@suedymond.com
Lets keep the ball rolling, and not be stuck in this!
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