Summary of a normal month, and what keeps me awake at night

I recently applied to Centrelink for Carer Payment. The payment is supposed to be for a person caring for someone whose support needs are significant enough to prevent the carer from being able to work elsewhere to earn money.

I have three children with high support needs at the moment, and while Hubby is working full time I am not able to work because I spend so much time organising and attending appointments for and with them, liasing with their school teachers, and being available to support them whenever they are not at home.

I filled in 3 lots of paperwork, made an appointment with the Doctor so she could fill in 3 treating doctors reports, and put all the other ridiculous amounts of supporting evidence together for Centrelink, then sent the application in. I figured that even if the care needs of one of the kids didn't make me eligible for the payment, surely having the 3 of them in the one application would. The application process even had a procedure for applying for a single payment based on care needs of more than one person. So, I crossed my fingers and waited. I got a phone call a couple of weeks later, to tell me that 2 of my children's care needs were not high enough so they would not be considered in the application. Um, what? The whole point was that it is the 3 *combined*!!

But here's the thing that angered me the most. The guy on the phone, who doesn't know me, has never met me or my kids and who used the numerical codes next to the boxes I ticked (rather than the comments I wrote all over the form) to determine that my kids don't take up enough of my time to prevent me form being able to earn an income, said to me.... "we can't count time spent on attending appointments and such because that is something all parents do for their children".

So, I started keeping a record of the appointments I have attended in the last month that have been related to providing care for the 3 kids who were included in the application:

5 psychology appointments, 6 Doctors appointments, 2 Psychiatrist appointments, 6 meetings with School staff, 8 phone calls to School staff (each at least 15 minutes in duration), a Dentist appointment (that is significant because it had to be specially booked an hour away from home in order to access adequate anaesthetic for  my daughter with Sensory Processing Disorder), 1 meeting with Preschool Director, 2 appointments with Support Worker.

Here is a summary of the appointments I have attended for my other 2 children in the last month:






Is it just me, or can anyone else see a difference here?

Mr Centrelink Clerk, I think it's possible you have NO IDEA WHAT YOU ARE TALKING ABOUT.

And, although it is not relevant to the Centrelink payment application, I also attended a further 10 appointments with my Hubby to support him in managing his Health needs. That is more than usual for him due to a back injury sustained at work 6 weeks ago, but would have been much easier to deal with if I hadn't been doing all the other things.

So, on average in the past month I have attended 2 health and support needs related appointments each week day (Monday - Friday).  I have also had to change personal plans at the drop of a hat numerous times due to needing to be home unexpectedly to be with kids who have not been able to attend school due to Autism or Bipolar related stresses and anxiety.

While it is a normal part of my life, and while I acknowledge I am not privy to the details of other peoples every move and regular appointments, something tells me that this normal I experience is quite different than other peoples normal schedules.

Most of the time I do not begrudge the time I spend on supporting my children. Sometimes I do feel tired and a bit overwhelmed. But I love them, and it is so worth the time and effort to see them progress and grow and do well.

I do, however, feel frustrated and annoyed when "the system" that is supposed to be there to help people whose "normal" is a bit more challenging turns around and says "Nope- you are not doing it tough enough to satisfy our numerical equation".

I'm not looking for sympathy here. I'm not looking for a pat on the back.

I am simply saying that I think "the system" and society fails to recognise the real needs a lot of families living with things like Autism and Bipolar actually have. These so called invisible disabilities are not acknowledged in ways that are helpful.

My Husband and kids live every day with the very real effects of the stigma of their diagnoses.... bullying, snide comments, assumptions, whispered conversations behind their backs..... and more.

I have blogged before about how it is important for people with influence to be responsible with their words and actions (click to read my Letter to 50 Cent or my response to the acquittal of a couple who had caged their Autistic children or my Open Letter to the NSW Government regarding cuts to Disability Support Funding in schools), and I will refrain from saying anything about TIME magazines headline on the changes to the DSM "Redefining Crazy" except that I think whoever chose that awful discriminatory title ought to be fired.

I really should stop spending my energy being cranky about things like Mr Centrelink Clerk. There is not much I can actually do to change the way the cogs grind in those Government Departments. But it is hard not to feel angry when you live daily pushing back against the societal attitudes that have created the cogs and have set them grinding.

And although it is relatively easy to talk and write about the tangible things that happen and label them as wrong, those are not the things that keep me awake at night.

How do I teach my kids to be decent human beings when every day others take advantage of the fact they are different?
How do I help them to grow up with a strong sense of self and worth when every day others cut them down and fail to acknowledge their value just because they don't fit the mould?
How do I adequately support my kids to learn sufficient coping skills to deal with attitudes that are so deeply entrenched in our society that most people don't even realise they engage in behaviours that make life so difficult for the minority?
How do I help them learn to navigate a world where the acknowledgement of their unique needs and potential is manhandled through formulas and policy documents by those with the power to help them rather than being thoughtfully and carefully considered?
What is the "right" thing to do when my son asks me if he can stay home for the rest of the year instead of having to go back to school and be around people who disrespect him and stress him out?

This is our normal.