Little Johnny made an announcement yesterday. His doppleganger Kevin bobbed his head in agreement.
Autism is baaaaad. Govt is gooooood. Lets chuck some money at early intervention.
A4 worked hard for this. Our convenor Bob was there. Johnny quoted Bob’s research, and made it sound like his own. Typical.
None of the money chucking will benefit us. It is not going to get our house back. It’s not going to be retrospective and bring back our lifestyle and sanity after spending more time and money than any parent should have to spend. And any sibling should have to sacrifice.
But believe it or not, that is not my whinge for the day.
Today’s bitterness is still directed at the Govt, but it has to do with caring for Boo.
The Australian Govt has a program where if your youngest child is at school and you get govt benefits you need to study or get a job. Fair ’nuff I say. But perhaps they need to have someone take a little look at the rules.
I am officially a carer for both my son and husband. I don’t get a payment or anything for DH but since his breakdown I am recognised as his carer as well. And I work. I have scaled back my career aspirations and now work part time while Boo is at school. I had plans and was being groomed for something ‘more’ in my dept. That all disappeared when Boo was diagnosed. I am not bitter about that, I have a more important job now. My Boo is my life, right now he is asleep (finally!) at my feet on a mattress on the loungeroom floor. Snoring lightly, his hair all tousled and beautiful face poking out from his doona cocoon. My forever 2 year old.
But I get pissed off when I get hauled into Centrelink to justify my existence and forced to go to ‘back to work’ training. I am freaking working you morons! Someone please press a fucking button and leave me alone!
Then the pollies get their mugs on TV and say ‘oh the poor carers they have it so hard, they are saving the govt millions of dollars every year and we need to support them yada yada yada’ – dont piss in my pocket buddy, I have enough to do washing shit and toothpaste off the walls without you giving me extra laundry to do. And I am sure your urine don’t smell like flowers.
Now that DH is easing back into work we are in trouble.
You see, I can get respite (a qualified carer coming into our home) to go to the hairdressers or have a massage or go to the movies, but I can’t get it if I am working. If I am working I need to find alternate support. Boo cannot go into child care because of his disability, they don’t have the ‘facilities’ or ‘support’ or fucking ‘clue’ here. There is no where to go.
So I have to ask my parents. My parents that are getting older. My father who is legally blind and has many other difficulties due to the pituitary cancer which caused his blindness, the hip that he is waiting to be replaced and the fact that he is in remission from Lymphoma, my mother who is not only his carer but has health issues of her own including lyphodema after surviving breast cancer. (Yeah, remember yesterday saying I didn’t need someone else wishing me bad luck, that is not the half of my parents dramas) One of them needs to come and care for my child that either my father can’t see or my mother is shorter than so I can go and pay my way in society.
Apparently I should ask my 15 year old to care for her brother. Apparently I should ask her to take responsibility for Boo and give up her life for him. It is bad enough that the girls know that they will have to take over the care of their brother once I have gone for the long nap, I am not asking them to take sole responsibility for him while their parents go and try and earn a wage.
So WTF am I supposed to do Johnny? While you are paying lip service to our plight, I am raising revenue for you in your govt office and caring for 4 of your citizens (my parents need a lot of help too), raising 2 potential tax payers to pay for your retirement while my brother is off fighting your war so you can save face with your mate George.
I have been keeping up with my side of the bargain.
You want me to work, I want to work because it makes me feel like I am something other than a carer.
So how about a little support instead of a pat on the head. It messes up my hair.