An open letter from a frustrated mother to an over-paid Bureacrat.

If you’ve clicked on my blog hoping to see a cheerful upbeat encouraging blog post today – you will be disappointed. Today’s post is something that I need to get of my chest, things have been very trying here lately and I’m using this platform to voice a frustration that I have with the current government and those in positions of influence.

But as you read this: Please know that I haven’t lost faith in God or his miracle-working power – I know He is working in our lives and that He will make it all turn out for good , but the light at the end of the tunnel is quite dim right now and I’m writing this out as a form of therapy for me.

Feel free to click elsewhere and read a happier, cheerier post that someone else wrote if you think you can’t handle this. I won’t hold it against you….I promise

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Bureaucrat : an official who works by fixed routine without exercising intelligent judgment.

Dear Mr Bureaucrat,

I don’t even know your name. You hide behind unnecessary paperwork and ridiculous rules and regulations making it impossible for the average parent to even gain access to you. You’ve been sent numerous files from several sources on our family and therefore should already know our situation.

But rather than make you sift though more paperwork and waste MORE of my precious time, let me refresh you:

We have 3 children, 2 of them are diagnosed on the autistic spectrum and we have no family living nearby at all. My husband works away from home a lot and travels interstate regularly. Most of the child rearing falls onto me and I have requested help more times than I can remember. I have had social workers submit requests on our behalf, but still you guys continue to push all of those facts to the side as you reject us time and time again for respite. I just don’t understand at all and I am getting desperate to be heard.

Do you know that our family is held together by duct tape? And do you know that this tape is getting dangerously thin?  It is fraying at the edges and it won’t be long until everything falls apart at this rate.

I seriously have begun to doubt that you and all your bureaucrat friends with your stupid bourgeois rules even care.

Are you aware that we spend an absolute fortune on sleeping, anti-anxiety and anti-depressant medications each month just so we can cope?

I’ve been told to go and talk to a psychologist in conjunction with my meds for my own well-being, but frankly: I don’t see the point. Because just talking never changes anything, I want actual physical help. I want someone to come and take my son on a regular basis and GIVE ME A BREAK.  Words are absolutely useless to me right now and mostly serve no real purpose other than to annoy me further.

Recently I have had my own medication increased. Doubled in dosage actually so that I can ‘cope’ with my load. But I’m not interested in just simply coping. I want to thrive, I want to succeed and I want to bloom. I want to be the mother that my kids deserve not the mother that they are stuck with.

Because ‘coping’ means barely scraping by and that’s just not enough. It will never be enough.

Surely with the ever-increasing rate of autism in this country SOMETHING has got to shift. MORE services need to be put in place and funded and more families need to be able to access them.

And I am not the only one screaming out for help here. There are many others who are also being crippled by the weight of carrying so much responsibility on their own. This is not just child rearing: This is parenting extreme style. And a lot of the time it is so extreme that it would frighten the pants off most ordinary folk.

Most days I feel like I am gripping onto the edge of a cliff with my fingertips while the rest of me is dangling over a bottomless chasm. We ASD parents deal with all the same issues as parents of typical children do, but then we have all the other added ASD stuff on top. We deal with major sleeping issues, toileting issues, communication issues, issues with motor skills both fine and gross, sensory issues, learning difficulties, and a host of other things. Most of our kids have a variety of letters to add to their autism diagnosis because autism rarely travels alone. Our kids also carry diagnoses like: SPD,ADD,ADHD,ODD,OCD to name but a few.

Right now, our entire family dynamic is malfunctioning and no-one in the higher places wants to touch us for whatever reason we are given THIS week as an excuse.

Seriously: This is Australia…..The “lucky” country. Well…apparently it is. I’m have to say that I’m not feeling the lucky part right now.

Mr Bureaucrat: We are tired of living in the too-hard-basket and we want out because this is just ridiculous.

No actually: it’s a big fat joke.

And while I’m on it, What are you doing about funding for autism in schools? Because last time I checked – Aussie kids don’t get anywhere near the aide that they need or deserve. It’s embarrassing to read stories from all over the world and see just how far behind we are as a country. Do you guys in your expensive suits in your leather swivel chairs with your water views and free lunches and frequent overseas trips on our tax money even care?

“Frustrated” is the word that frequently comes to mind whenever I’m asked how I am these days. So damn frustrated.

Does it have to get to the point where a child is in danger or a parent loses their mind and gets sectioned before you’ll step in? Where exactly is the line between desperate and worthy?

I’m frustrated at the system and at the exhaustion and at the lengths that we are made to go to just to survive these days.

Something’s gotta change Mr Bureaucrat , I don’t know how and I don’t know when, but it HAS to change.

Signed,

An extremely frustrated mother.

The therapy dilemma.

Well now that holidays are over and term 2 is in full swing, all the therapies start up again.

We are fortunate to have a speech therapist and on occupational therapist (OT) come to our home so that we don’t have to drag all 3 kids to all the appointments.

And we are thankful that the Australian Government has a scheme in place for early intervention for ASDs. It’s called the Helping children with autism (HWCA) package.

It is only available until the child turns 7 which is only 3 months for H.
L will still have funding as he is still in the pre-school age group but we are faced with a dilemma.

H is by far, much more in need of therapies than L (though L has significant speech delays and once his funding runs out we are out on our own again.

I already have 4 out of 5 weekday afternoons taken up with speech, OT appts for both boys and tutoring for H and an after school socialising aspergers group for H and whilst on one hand, it would be nice to have some free time again after school, on the other hand, H desperately needs these therapies to continue to function.

His O.T. is doing a Sensory Integration Diet with him but it’s overwhelming to think that if we don’t continue it after the funding runs out, that it will all fall on me to do this therapy in the home by myself.

I’m sure I will get my thoughts more together before then and come up with a solution. Maybe cut back to fortnightly visits or take him out to playgrounds after school etc etc.

I’m only journalling my thoughts on this not panicking, as his birthday gets nearer, my head will be clearer.

It’s funny because I often pat myself on the back because I feel I’ve learned so much about autism in the past 3 years but then you do some research and discover that there is SO MUCH more to learn and that it’s really only the tip of the iceberg in terms of knowledge and practicality.
But right now, I’m feeling overwhelmed and I can smell the coffee brewing (God bless my husband) so I’m making the decision to push it aside for another few weeks and deal with it then lol!