Remember when the NDIS was the NDIS? A Carer’s Lament.

As the parent of a child with autism I don’t need a pat on the back for all that I do.

Nor do I need to be placated with the odd carers lunch.

I don’t need to go to workshops every week,

Or wear a gold name badge to tell me I’m important.

 I don’t need to be invited to meetings

To serve as the token parent of a child with a diffability

Just  to make you look good.

Chances are I’ll be far too busy looking after my own son ,

To attend your pretense of a meeting.

But then again,

If you really had any understanding of the true issues,

That carer’s face

Then you’d already know that

Wouldn’t you?

Or perhaps the fact that we are all to busy,

Filling our days with the things,

That need to be done,

Instead of discussing the ways,

In which you think they should be done,

Is exactly what you are counting on?

So you can continue to conjure up,

Your stealth legislation.

Either way I don’t need to be the only person in the room not being paid,

To sit through yet another round of your dead-end discussions,

That so skillfully fail to address every real issue,

When it comes to the idea of disability reform.

 So let me make this clearer for you,

 I don’t need to attend carer’s workshops,

I don’t need someone condescendingly telling me that I need to take care of myself,

Whilst  simultaneously denying me the right to have my ‘care’ valued at a rate,

That would be equivalent to a living wage,

 I don’t need any more bureaucratic solutions,

To what is in essence, a very human condition,

So please stop waving your over-designed justifications,

And compulsive needs,

For economic rationalisation at me.

Let me give you some economic rationalisation of my own,

Carer‘s save tax payers billions of dollars every year,

Given that cost benefit analysis,

Are you seriously going to try to tell me,

That this country can’t afford to pay carer’s,

Even so much as a sub-standard wage,

For all of the work that they do?

And while you’re mulling that one over ,

I have another list for you,

It’s called ‘The things that I need’.

I need you to pull your head out the sand,

To stand beside me,

Not above,

I need you to make a sincere commitment,

Toward fulfilling your obligations,

In securing the unfailing provisions,

Including all of the forms of assistance,

That my son may need,

To respectfully be,

Who is,

In the best,

Most humanly honorable way possible.

This means doing more than just standing by,

As policy makers turn what once was a hard-fought campaign for equality,

Into a maybe we should change the name of this pony,

And then lets pop in a few more vote winning extras,

Into the mix,

Like Work Cover Assistance,

This is meant to be the NDIS,

Not a free for all for anyone who might get injured at work.

So please,

Can you just try to remember how this reform all started out?

And the people whom it’s meant to represent.

Related articles

• Support family carers says minister (bbc.co.uk)
• Caring is a love story (megbarclay.wordpress.com)
• 1 in 8 People: Could it Be You? (carefreecarers.wordpress.com)
• The NDIS: A diamond in the political dirt (australiantimes.co.uk)
• So whats in a name you may well ask? Well everything if it denotes dependence instead of independence. (seventhvoice.wordpress.com)
• NDIS: rights-based paradigm shift or same old charity? (abc.net.au)
• House of Reps passes NDIS bill (news.theage.com.au)
• DisabilityCare: What’s in a name? (abc.net.au)

 

Lyrics and Poetry to Live By

Have you ever found a song that just  somehow sums up your journey through life beautifully?

For me, being the mother of a son with Autism, life for us has definitely had its moments.

Yet one of my core beliefs has always been that,  no matter what,  I will be there for him.

For me that means always trying my absolute best to understand him,

To put myself as best I can in his shoes,

And to see the world through his eyes.

To hold him when it all gets too much for him,

And to encourage him soar like an eagle,

When ever he can and in what ever way chooses.

So this song for me called “Night Minds”  by the wonderful Missy Higgins,

Pretty much sums up how I feel about my son,

Our life’s together,

And the promise that I’ve always made to myself to be there,

Not just for him,

But with him.

Night Minds

Just lay it all down.

Put your face into my neck and let it fall out.

I know ,I know ,I know.

I knew before you got home.

This world you’re in now,

It doesn’t have to be alone,

I’ll get there somehow, ‘cos,

I know, I know, I know,

When, even springtime feels cold.

But I will learn to breathe this ugliness you see,

So we can both be there,

And we can both share the dark.

And in our honesty, together we will rise,

Out of our night minds, and into the light,

At the end of the fight…

You were blessed by,

A different kind of inner view:

It’s all magnified.

The highs will make you fly,

But the lows make you want to die.

And I was once there,

Hanging from that very ledge,

Where you are standing.

So I know,

I know,

I know,

It’s easier to let go.

But I will learn to breathe,

This ugliness you see,

So we can both be there and we can both share the dark.

And in our honesty,

Together we will rise,

Out of our night minds,

And into the light,

At the end of the fight.

Related articles

• Missy Higgins’ “Everyone’s Waiting” (paulinuspandiangan.wordpress.com)
• http://seventhvoice.wordpress.com/2013/04/27/can-you-tell-just-by-looking/

Do Step Parents Every Really Love Their Step Children In The Same Way As They Love Their Own

I know the rhetoric of motherhood would have as all believing that step parents can and do love their step children with the same depth of devotion that they love their own biological children, but for some years now, I’ve been wondering if this rhetoric is really true?

Can a step parent ever truly love a step child in the same way that they love their own biological child?

Now don’t get me wrong here, I’m not trying to automatically cast all step mother’s by default as the villain of the piece.

Nor am I suggesting that each and every blended family holds the same level of dynamics within them, but what I am suggesting is that we stop and really look at the realities of being a step parent.

As a parent you naturally want  what is best for your child.

But what happens if what is best for your own child stands in stark contrast with what is best for your step child?

Under these circumstances which child wins out?

Which instinctual part of you, as a both a mother and a step mother, do you give in too?

Do you put your own biological child’s needs first, as instinct dictates, or do you fight this side of yourself and instead place the needs of your step child first?

I think that if women were truly to be honest about this, they’d admit that in most cases their instincts to first seek the comfort of their own biological child wins out over that of primarily seeking to administer that same  level of comfort to their non-biological child.

I’ve seen this dynamic play out time and time again  both whenever my own children are in the care of their step-mother and within my own childhood growing up as part of  a blended family.

I know that from my own perspective, the needs/wants of the biological child always seem to win out over the needs/wants of the non-biological child.

And I strongly suspect that I am far from being the only person who has experienced the results of step parenting in this way.

If you were to throw into the whole step parenting mix a non biological child with a disability, what happens then?

Would a step mother willingly fore go her own child’s hobbies and interests in order to spend hour upon hour at a therapy center with her non biological child if need be?

And if she did, would that not create in her a level of resentment on behalf of her own biological child that would be difficult to suppress no matter how hard she might try?

Would that resentment then present itself in other passive aggressive ways that may seem less obvious yet still be just as detrimental to the self-esteem of her non-biological child?

Things such as never letting the step child have a say in the movies or the  tv channels that they watch, the snacks that they eat, or the places that they go for outings?

From my experience, this is exactly how passive aggressive step parenting presents itself.

Which is why it  leads me to wonder whether or not  as a society, we’ve simply created an idealized version of what a step mother should be capable of doing, for example lavishing equal amounts of unconditional love on both her own child and her step child, instead of acknowledging that in reality, instinctually, if for no other reason,  this ideal may never really be the case.

For much of this kind of happy ever after, unrealistic thinking, I blame the Brady Bunch.

What do you think?

Have you grown up in a blended family?

If so were you the step child or the biological child?

And what were you experiences of it?

Related articles

• The Anti-Step Mom (unnecessarywisdom.wordpress.com)
• Blended Families, Step Parenting & Co- Parenting (lipssealedsoulspeaks.com)
• 5 Tips for Blended Families – Parenting (everydayfamily.com)
• Steps Toward Building Our Stepfamily (everydayfamily.com)
• What Is Your Story? (isthatamom.wordpress.com)
• step parent 101 (rose48809.wordpress.com)
• Being an effective step parent (2plus1equalscrazymom.wordpress.com)
• Tips for Step Parents (isthatamom.wordpress.com)

 

A Mother's Love

Reblogged from Lady Lovely Blogger:

A mother’s love

Triggers her daughters grace

Turning mountains into gold

Melting the world with her soul

***

“A mothers love is the fuel that enables a normal human being, to do the impossible.” Unknown

Yes indeed. A mother's love can melt the world with her soul. Absolutely beautiful.  

Plain Label Genius I Ain’t……..

After spending all morning crunching data and getting really excited that the numbers I’m  beginning to see are indicating that women with Asperger’s Syndrome are now attaining university degrees at  a much higher ratio rate than that of  their male counter parts, I then went and followed up my statistical breakthrough  by doing something so incredibly scatter brained that even my daughter is still laughing about it……..

Ok…. so here it is…….. I’d spent far too much time lost in the world of data analysis……. so much so that I’d left my self  way short on time to get myself respectably  ready to drive half way across town to pick my son up from college without looking like some kind of mad, unkempt woman…..

So I took a short cut and decided to use my daughters bathroom…… Which trust me, is normally considered un-enterable hallowed ground, but does however have the advantage of  usually being  a one stop shop for  every kind of  bib and bob you can imagine,  and all spread out within easy reach of her incredibly cluttered hand basin. (Yes she has her own bathroom. Don’t ask why, just accept that life is far easier this way).

All’s going well….. Good plan I’m thinking to myself,…… making good time,……. looking like less of a dragon and more like an actual human being…….because I know….. I just know that it’s always the days when you haven’t made the effort to at least look reasonable that someone at the College will be wondering if they could just had a “quick word with you about something that happened today in their office”……….

So I’m making good time and secretly thinking to myself that I should sneak in and use my daughters bathroom more often when…….

Now let me just preface this  next bit by saying that my daughter is always telling me to stop buying her plain label deodorant and plain label hair spray, as she often gets them confused, what with the cans being the same shape and the same color and all,…. but me…..being the ever budget wise mum that I am (AKA Scrooge) ….. and knowing full well how many liters of the stuff she goes through on a daily basis……  I of course insist on  continuing to  buy her plain label, maxi size, everything…..

Well today the joke was well and truly on me……. in my rush to become more recognizably human….. I  accidentally sprayed deodorant on my hair and only narrowly escaped spraying hairspray in those places where no one ever wants their hair to stick  straight out like narrowly quilled razor blades,  (and just to clarify I do indeed mean under my arms and not anywhere else)……

So….. It just goes to show that although I  may have 2 degrees….. and am somewhat good at making sense out of what often appears to be nothing more than random sets of numbers to others,  I’m actually not all that smart……

And sometimes….. Just sometimes…… my daughter’s right……..

Never the less,  she’s still getting plain label everything until she learns that quantity does not equal quality……

And I of course…. will never, no matter how tempted I may be, ever  use my daughter’s  bathroom again!!!!!

Parenting in the Digital Age. The Dangers of Mobile Phone Uploads and “Selfies.” A plea for teenage girls and their parents to become more aware of what’s going on out there in cyber space.

This is just one example of the phenomenon known as a “Selfie” ( a photo taken of oneself by oneself) that is beginning to flood the pages of Face Book, Instagram, YouTube and other various forms of social media.

What’s disturbing about this photo, amongst oh so many other things, is that the girl in it is obviously quite young.

Young enough to not be posing for pictures like this in her underwear, (even if she is the one taking the photo of herself), and certainly not yet old enough to realize the dangers inherent in posting photos like this on the world-wide web, where anyone can download them and do whatever they want with them.

As a parent, I have to admit that I am shocked to see this kind of photo being posted regularly via links to my own daughter’s Facebook page.

As a mother, whenever I see these images, I wonder whether or not the girl’s parents are aware of what their daughters are posting on-line?

This is a very different response to the one I would have had less than a year ago, when I would have automatically condemned the girl’s parents for “letting their daughter’s take such photos”.

Now with the benefit of hindsight and a rapid education in the modality of our modern social media, (thanks in large part to my own children’s use of social networking), I am beginning to understand that such photos can be taken without a parent even so much as being aware that their children are doing anything more than playing with their iPod’s, iPad’s or mobile phones all within the safety and the privacy of their own bedrooms.

And of course, therein lies the rub.

We think that as parents, our children are safe when they are in the privacy of our houses or in the safety of their own rooms.

But the truth is….. Sometimes they’re not.

Sometimes, especially for teenage girls, privacy when combined with the ability of mobile phones, iPod’s or I pad’s to take photos and upload them instantly onto the internet, along side the peer pressure they face to  be cool, can  become nothing short of a recipe for disaster.

A disaster that anyone can download, copy and redistribute to as many different web sites, as many times as they like.

As if that isn’t a creepy enough thought already, my major concern in all of this is for my own daughter.

What happens if these kinds of photos appear often enough on her links that they become viewed as common place and no big deal at all?

Will she then, in time, begin to believe that it’s acceptable to post up similar images of herself? As if it is no ‘biggie’ to expose her face and her body in such a way to the world at large?

That if enough of her friends start doing it then eventually it won’t matter to her how many times I tell her that it’s wrong……. and that it is a big deal…..

And then maybe…..

Just maybe…..

The first time I’ll know anything about it will be once it’s already too late to take it back.

And perhaps the scariest part of this line of thinking is that when it comes to questions like this……

How do I know that she hasn’t already snapped a shot of herself like that within the privacy of her own bedroom?

With the phone I brought her to keep her safe while she’s out and about in case of emergencies.

The answer is….. I don’t know. And if even I have to admit that I don’t know, then there must be other parents out there who may also have to admit that they don’t know either.

So I think the days of believing that we as parents can control what our children do, show and say have well and truly been taken away by the digital age.

So we’d best get on with the job of understanding this and start looking at finding new ways of safe guarding our children’s best interests.

In the meantime here’s a simple truth for every teenager out there………

Once a picture has been posted on the internet you can never really get it back.

It is there to stay.

Yes sure, you may be able to delete the original copy that you put up……… but can you track down and trace however many people have downloaded it in the meantime?

Can you prevent them from sharing it?

Can you prevent complete strangers from downloading your photos?

You may think that you can….. But you can’t……

Unfortunately the photo at the top of the page is proof that anyone, and I mean anyone, can download your personal pictures from any unprotected social media sites……

Scared yet?????????

Because I know I certainly am.

The photo used in this post is the least offensive “selfie” shot of its variety that I could find. Believe it or not, this young girl is actually wearing more clothes than most of the others. Disgusting I know.

Related articles

• Posting Photos of Children Online (webroot.com)
• Facebook Parenting Guide by SociallyActive.com hits #1 on Amazon eBooks (prweb.com)
• New Concerns About Privacy on Facebook (jeannehannah.typepad.com)

On Being Doctor Who’s Wife…..

Yesterday my daughter stared at me for several seconds and then said rather thoughtfully……

“You know mum,………….. you look like you could be Dr Who’s wife.”

After hearing her words I looked down at my outfit and began silently ticking off a quick check list of similarities in my head.

¾ length coat. Check.

Long scarf. Check

Vest. Check.

Trousers. Check.

Hat. Check.

Yes, I thought, I do have to agree with my daughter on this one.

I honestly hadn’t realized that I was dressing like either a fictional Time Lord or his wife.

Oh Well!!!!!

It seems  that my love of androgynous clothing often sees me swathed in outfits that could be interpreted as being somewhat reminiscent of the many incarnations of Dr Who’s characters. (Think Tom Baker and beyond.)

Yet funnily enough, I don’t think I’ve ever particularly dressed like anyone’s wife, let alone  Dr Who’s wife.

So given that there was nothing wifely what so ever about my outfit in and of itself, and that I haven’t been anyone’s wife for a more than half of my daughter’s lifetime, her reaction to my androgynous clothing left me wondering why my outfit, in her eyes at least, automatically cast me in the role of Dr Who’s wife instead of in the role of a Dr Who type person myself?

Did she cast me as Dr Who’s wife simply because I’m her mum and therefore she knows I’m female?

If so, does being female in her eyes at least, automatically equate to only being seen as holding the potential for becoming the wife of someone interesting instead of holding the potential of becoming someone interesting as a female herself?

Such troubling constructions of femininity are worrying me more and more as I watch my daughter enter into an adolescents where coolness is rated by the amount of “Selfies” (photos taken by oneself of oneself) that can be posted on Instagram or Facebook on any given day, and her personal self-esteem is to easily being measured by the number of “likes” such “Selfies” generate.

Sometimes it seems as if our young girls are becoming their own profitless pimps giving away images of their innocent selves so blithely to the digital world.

And they are doing so all in the name of popularity.

So just when does this hideously artificial construct of femininity that states that girls should be seen and not heard, first start leaving its nasty little footprints all over the minds of our daughters and how on earth can we even begin to combat it when even androgyny must first be given a gender in order for it to be understood?

I can’t help but admit that some days (actually more days than not)  I wish that my daughter would take a leaf or two out of my own book and start wearing long coats and trousers instead of singlets and skirts.

I’d love to see her dressing like a cool teenage version of Dr Who herself.

Or even Captain Jack would do the trick.

Anything to get her out of this mindset that the only way to be an interesting female is to either wear half a ton of makeup and skimpy top or to marry a man who’s interesting enough for the both of them.

Any ideas???????

Related articles

• Gender Blenders: The Androgynous Beauties Of Hollywood (styleblazer.com)
• Pictorial: A Vintage Androgynous Fashion World (fashiontv.com)
• #Me: Instagram Narcissism And The Scourge Of The Selfie (readwrite.com)
• Androgyny (reviewspotblog.com)
• Androgynous, bohemian girl (neurodiversityandcollege.wordpress.com)
• Dr Who makes Blackburn owners Venky’s his latest enemy (metro.co.uk)
• Infrared Androgyny Editorials – The BloodBeat TOH Portrait Series Shows Eccentric Edge (TrendHunter.com) (trendhunter.com)
• 54 Monochromatic Gender-Bending Editorials – From Angelic Androgynous Fashion to Boyish Biker Shoots (TrendHunter.com) (trendhunter.com)
• Gender Differences In Leadership A Myth (albanytribune.com)
• Selfie syndrome: how much is too much? (beautylust.co.nz)

 

Body Clocks and Brain Fog

Dear Body Clock,

Please try and understand that 3 Am is not an appropriate hour to finally let me fall asleep.

I’d much prefer 10pm, 10-30, 11pm or if that’s just too much for you to handle, I could see myself settling for 12 am at a push, if I really have too.

Seriously body clock, it’s time to give it up before I lose all sense of comprehension.

You see the milk doesn’t belong in oven, nor the car keys in the sink.

Clearly we simply cannot go on this way.

I can’t continue to let you lull me into drifting my days away on the sea of  hapless brain fog  that your fun and games are creating  for me.

It’s time to put the milk back in the fridge and the car keys back on the hook.

As school is returning in less than 2 weeks, and whilst I have greatly enjoyed relaxing into your unwholesome descent into island time, quite honestly, right about now, I need my sleeping life back.

So please body clock…… what do you say……how about tonight we give 10 o’clock a try?

Related articles

• The body clock. (inmanbenedict.wordpress.com)
• Wake Up Happy! – 6 Unconventional Sleep TIps to Help You Sleep Better (crestellbedding.wordpress.com)
• Savouring and Saving Daylight when the clock jumps back (chilloutchicken.wordpress.com)
• Cock has a Clock! (freethoughtblogs.com)
• The Changing Body Clock (writingispassion.com)
• The Re-Timer Is Supposed To Reset Your Body Clock (video) (gadgetreview.com)
• The Clockwork Diet? (psychologytoday.com)
• Battle of the Sexes: The Difference in Sleep Regulation Between Men and Women (medicaldaily.com)
• Healthy Refreshing Breakfast…way to go on Friday (khushinspires.wordpress.com)

 

Instead of developing thicker skin……..

Instead of developing  thicker skin,

I wish the world,

Would instead,

Decide to become,

 A  little kinder.

Kinder to everyone,

Whether there be differences,

Or similarities,

Kinder to everyone,

Regardless of gender,

Kinder to everyone,

No matter their skin color,

Kinder to everyone,

Whether two or eighty,

Kinder to everyone,

No matter their IQ,

Just think of the world,

You could be living in,

If one day we decided,

To all be a little,

Kinder to everyone,

Kinder to you.

Freedom and Acceptance