Asperger Syndrome – Grappling and Grasping

Artwork by Linzi Lynn

Something I’ve often noticed about the way Asperger’s Syndrome impacts on my life is the disparity that it creates between my inability to speak or talk smoothly and freely to people in real life, compared with my ability to express myself clearly in writing.

Believe it or not I regularly forget the words I want to use when I’m talking to people face to face.

They simply seem to just escape me.

Like birds that have flown their coop and no amount of trying can retrieve them.

In moments like these I find myself gasping for breath and completely lost, as my inner panic at not being able to find the right words, envelopes me.

More often than not I end up stuttering or just stopping, awkwardly, half way through a sentence.

Trapped in a suspended silence, gazing solemnly at the floor, while my mind continues grasping for that which can no longer be found.

I’m sure at such times I must come across as being an absolutely dim-witted ‘weirdo’.

I guess this is also the reason why most people are surprised to discover that I have two degree’s.

I bet they wonder exactly which cereal box I found my degree’s in.

It’s also why my family insist that I “could be doing so much more with my life….if only I wanted to”.

Hmmm…. Yes…. Right…. Because of course I want to be completely tongue-tied and empty-headed whenever I’m speaking to another person.

I can never seem to make my family understand that I don’t want my words to escape me when I need them most.

Or that the loss of verbal ability I experience when trying to talk to someone, isn’t ‘just a matter of choice’ or ‘obstinacy’.

It’s a genuinely, real, experience.

Yet give me a keyboard and I’m perfectly fine.

I can write for hours and when I do, words just seem to flow out of me.

There’s no grasping or grappling furiously for a language that is no longer there.

There’s no effort, no strain, no awkward silences.

There is only the freedom of expression.

The freedom of being me.

Does anyone else experience this level of disparity between the things you can do in one medium, yet not in another?

Why Capitalism and Care – Like oil and water should never mix.

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The idea of turning ‘care’ into a commodity that can be bought and sold instead of acknowledged as a virtue of the human spirit that can be given willingly, is not a new one.

We’ve long paid doctors, nurses, psychologists, social workers, support workers and a whole host of others who belong to the so-called ‘Caring Professions’ for years.

But what’s changed in the last few decades are the amount of people now being employed in what has come to be known as the ‘Care Industry’.

And by this I mean workers who are not required to undergo years and years of study on how to ‘care’ for others, but instead workers who are simply doing a job with the label ‘Care’ stacked in front of it.

Such as those you’d find working in homes for the elderly or providing in home ‘care’ or assistance for those who are frail, ill or disabled within their own homes.

Once upon a time these workers may simply have been called ‘Domestic Help’, ‘Home Helpers’, ‘In Home Support Workers’ or Aides.

Today these same workers are called ‘Carers’.

Yet the thing is, despite the title they’ve been given, these workers are not carers because in reality, they do not truly care either for or about the people they are assisting once their allotted work period is over.

In other words, they are just like any other worker within a capitalist society in which every action that can possibly be bought and sold as labor is bought and sold, no matter the job description placed in front of it.

So once they are off the clock, just like any other worker, their job is done.

This means, in this case, that their allotted time for ‘caring’ is also done.

So employed ‘Carers’, in this sense, can be seen as merely workers who are performing a job and being paid for their time. Just like everyone else in the working world.

But people tend to forget this fact as soon as the term ‘carer’ is included within the job title.

Employed ‘Carers’ are often treated by others as if they are some kind of Florence Nightingale and the reason for this is quite simply to be found in the use of the term ‘carer’.

The word ‘Carer’ conjures up images of nurturing and self-sacrifice for the benefit of others.

Its use implies therefore that these workers not only do the practical things that are required but that they also actually care about the people they are working for in a way that means they are putting themselves out and going above and beyond the call of duty to help others.

Yet the truth is, if they weren’t being paid, they wouldn’t attend their work.

In other words, if they weren’t being paid to ‘care’ (i.e. do their jobs), then they wouldn’t ‘care’ (do their jobs).

So, in this instance the word ‘care’ is being used as euphemism for paid work assisting others.

Now where is the genuine care in that?

In fact where is the ‘care’ to be found within any of the so-called ‘care industries’?

Where’s the honest and genuine dedication toward making another’s life better or easier gone too?

These days, if you can’t pay for ‘care’, then you don’t get any ‘care’.

Unless of course that ‘care’ is being provided free of charge by a loving family member who genuinely wants the best for the relative they are caring for.

To my mind families are the real ‘carers’.

They don’t get paid and they never clock off.

They are the ones who share smiles and shed tears with their loved ones.

They live each and every trial of their loved ones life right alongside them.

They are never off call.

And yet, family members who willingly and lovingly assume the role of carers are routinely treated as if the time and energy they spend in ‘caring’ for a loved one is, in capitalist terms, worthless, for it has no immediate monetary value attached to it.

Familial carers do not get paid, not in the way that ‘employed carers’ do. If they are lucky they may receive some small stipend from the government, which is more often than not viewed by others as an unearned welfare payment, and yet these familial carers are the only ones who are ‘carers’ in the true sense of the word.

These true Carers find themselves caught up within a capitalistic system that devalues any work performed without monetary payment, whilst at the same time sets about promoting and deriving profits from the pseudo ‘care industry’ they’ve created.

One that has nothing what so ever to do with actually, genuinely caring for the wellbeing of others, and everything to do with caring only about their profit margins bottom line.

This isn’t ‘care’, it’s a capitalist industry that’s been artfully created by misappropriating a once genuine concept and turning it into yet another commodity to be bought and sold.

The lost soul inside.

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I am,

An open book,

With pages,

Missing.

 

I am,

An old film,

With frames cut,

Out.

 

I am,

An imposable puzzle,

With secrets,

Written on the back,

Of every piece.

 

I am like a memory,

Shattered into so many,

Small pieces,

That no one can ever,

Seem to remember me,

Whole.

 

I am,

An old pocket watch,

Lost in the sands,

Of time.

 

I am a little box,

With feelings locked inside,

But you can’t open me,

Because,

I have no key.

 

I am the kid,

That everyone see’s,

Yet still somehow,

Never seems to notice.

 

I am the child,

That speaks,

Yet no one ever hears,

The words I cry. 

 

I am the flame,

That will soon,

Go out.

 

But for you,

I will use,

The last,

Of my fire,

To keep,

You safe.   

This poem was written by my middle son just a few days ago. I know it has been tough on him growing up as the middle child, anchored as he is,  on either side, by siblings on the Autism Spectrum.

His words say it all and I am so very proud of his  extraordinarily sensitive and caring soul.

23 Things you can take for granted if you happen to be Neuro -Typical with Neuro-Typical children

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1. You can, if you wish, arrange to be in the company of people who share your own “neuro-typical status” most of the time.

 

2. If  you should need to move, you can be pretty sure of renting or purchasing housing in an area, that you can afford and in which you would want to live.

 

3. You can be pretty sure that your neighbors in such a location will be neutral or pleasant toward you.

 

4. You can go shopping alone most of the time,  and be pretty well assured that you will not be followed or harassed.

 

5. You can turn on the television or open to the front page of the paper and see people of your own “neuro- typical status” widely represented (in positive ways).

 

6. When you were told about your national heritage or about “civilization,” you were shown that people of your ilk made it what it is.

 

7. You can be sure that your children will be given curricular materials that testify to the existence of their “neuro-typical validity”.

 

8. You can arrange to protect your children most of the time from people who might not like them.

 

9. Whether you use checks, credit cards or cash, you can count on your “neuro-typical behaviour” not to work against the appearance of your financial reliability.

 

10. You can go into a supermarket or into a hairdresser’s without risking “being over whelmed by sensory stimulation”.

 

11. You can swear, or dress in second-hand clothes, or not answer letters, without having people attribute these choices to bad morals, or the inadequacies of  “having a non-neuro- typical status”.

 

12. You can speak in public to a powerful group without putting your “neurological status” on trial.

 

13. You can do well in a challenging situation without being called a credit to your “neuro-typical” class.

 

14. You will never be asked to speak on behalf of all the people in your “neuro- typical” group, everywhere.

 

15. You can remain oblivious of the “sensory needs and issues of non-neuro-typical persons” without feeling any cultural penalty for doing so.

 

16. You can criticize your government and talk about how much you fear its policies and behavior without being seen as an outsider.

 

17. You can be pretty sure that if you ask to talk to “the person in charge,” you will be facing a person of your own “neuro-typical status”

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18. You can easily buy posters, post-cards, picture books, greeting cards, dolls, toys, and children’s magazines featuring people of your own “neuro-typical status”.

 

19. You can go home from most meetings of organizations you belong to feeling somewhat tied in, rather than isolated, out-of-place, outnumbered, unheard, held at a distance, or feared.

 

20. You can take a job with an affirmative action employer without having co-workers on the job suspect that you got it because of your “neurological status”.

 

21. You can choose public accommodation without fearing that people of your “neurological status” will be mistreated in the place you have chosen.

 

22. You can be sure that if you need legal or medical help your “neurological status” will not work against you.

 

23. If your day, week or year is going badly, you need not ask of each negative episode or situation you’ve encountered, whether it holds “discriminatory” overtones.

Artwork by Sam Drawing

Artwork by Sam Drawing

These are just a few examples of the common everyday things that those of us  who experience Autism, Developmental delays, Brain Injuries, Chromosomal additions or deletions, or who are neurologically different, in any way,  can never  take for granted in our daily lives.

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So the next time you see someone struggling to do that which for you has now become so easy that  it’s taken for granted, take a few seconds before you cast judgement and ask what you can do to help, rather than  hinder, that person’s situation.

Art by Maria Zeldis

Art by Maria Zeldis

A little bit of kindness goes a long, long way but a little bit of understanding goes even further.

Art work by Kate Hannah

Art work by Kate Hannah

List originally compiled using the resources of the classic article “White Privilege: Unpacking the Invisible Knapsack” By Peggy McIntosh, and adapted by me to include and consider the ramifications of the taken for granted actions of those who do not experience any degree of neurological difference.

 

My Grandmother – The eternal gardener.

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When I think of my grandmother, I remember a woman who was very set in her ways, very regimented and extremely routine based.

gardnen 1A woman who rarely seemed to smile yet held a deep sense of commitment to family and an immense passion for growing flowers.

As an avid gardener, she could always be found, out in her field of flowers, and when I say always, I mean always, as in each and every day, come rain, hail or sun blistering heat so hot that it could give a person sun stroke.

Yet despite her love of being in the great outdoors, she rarely left the comfortable familiarity of her own land.

If anything had to be gathered in from the outside world, such as groceries, she’d write a list and send my grandfather out to fetch them.

As a child, I had assumed that everybody’s grandmother’s behaved in this way and that older women simply did not like having to be bothered with such tasks.

It is only now as an adult, that I am able to look back and wonder whether or not her actions were driven by a strong inner need for familiarity, routine and the desire to avoid non-essential social contact.

gardenerI’d love to have been mature enough to have asked her how she truly viewed and felt about her life before she passed away.

I can’t help wonder how such a conversation between the two of us may have gone and whether or not  we would have found our much-needed piece of common ground, upon which we could have stood together, while gazing out at all of her beloved flowers.

 

I am an Autism Parent

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I feel like a lone soldier lost on the battlefield of life.

No one hears my silent cries.

I have a great fear of death,

And an even greater fear of life.

1 constantly struggle to break through your steel armor,

And capture the spirit inside.

I live one second at a time,

Sometimes I think I’m invincible.

Yet as tough as I try to be,

Something always manages to touch my heart,

And keep it soft and vulnerable.

I have a solid steel faith in the future.

1 am physically stronger than anyone.

I carry the weight of the entire world on my shoulders.

I have mastered the art of suppressing my raging anger.

I hunger for any knowledge that is unavailable.

I have an overwhelming appreciation for the finer things in life;

Those things of highest quality:

A sunset,

A sunrise,

A dewdrop on a blade of grass,

A roaring thunderstorm,

A mud puddle,

Clouds,

And the touch of sand on bare feet.

I am the most isolated person on earth.

I am cast aside by my family and friends,

Yet admired and viewed reverently by them.

I am the most selfish and most self-sacrificing person alive.

I can laugh and know complete joy,

And simultaneously hold an ocean of tears.

I have grieved more than a nation:

I carry constant pain in my heart.

I know true happiness is loving unconditionally,

Loving and not being loved back,

A straight line,

A meal that stays on the table,

Dry feet,

Circles,

Eyes looking to me not through me,

A spoken word,

Any word,

A response to a single command,

A teardrop or silence.

I am often criticized and pitied.

I am not all that I can be or want to be.

1 keep searching the haunted castle of a beautiful mind.

I am alone;

I am the tiniest whisper in the thunderous echo of time.

I am the parent of an autistic child.

These amazingly honest and haunting words belong to Peggie and I thank her sincerely for allowing me to craft them into a poem.

 

Sometimes, when you’re busy being a special needs mum, you need a gentle reminder……

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Sometimes, when you’re busy being a mum, you forget how keenly your words and actions impact on the lives of  your children.

Last night my lovely daughter reminded me of this in the nicest possible way.

You see, over the course of the last week , we’ve both come down with a truly horrible flu.

My daughter came down with it first and after two days of coughing and feeling utterly blue she woke me up in the middle of the night to tell me that her head felt like it was exploding on the inside.

Without thinking twice I jumped up out of bed to check her temperature and then gave her some juice and some paracetamol.

Once those few things were done I invited her to snuggle up with me in bed and promised her that I’d watch over her all night.

Not long after she’d settled into my bed she rolled over and said;

“Oh mother…. I do believe I may well be in my final hours”.

As dramatic as her words sounded, instead of denying her the right to speak her feelings by rushing in and trying to tell her that she was wrong, I once again reassured her that I would be watching over her all night long and then asked her if she’d like me to get her an icy pole to soothe her dry, sore throat.

She agreed to the icy pole immediately and not long after eating it, fell into a deep, sound sleep.

By the time the morning arrived I too had begun to come down with the same dreaded flu.

So we both went off to visit our local doctor who found that my lovely girl had developed an ear infection on top of the flu, which is why she’d felt like her head  was “exploding on the inside”.

As for me, well I’d already been in the throes of fighting  off a sinus infection, as well as catching the flu, so antibiotics and lots of rest were prescribed for both of us.

Later that night I developed a massive migraine as a side effect of the antibiotics.

In response to my migraine misery, not only did my daughter make a point of coming in and checking on me all through the night, but each and every time she came into my room she would ask me:

“What can I do to make you feel  better mum? Can I get you a glass of water? Would you like an icy pole? Do you want me to hold your hand?”

Each time she did this I thanked her for being so kind and thoughtful and each time she would say “It’s okay mum, I know how bad it feels when you’re head’s exploding on the inside.”

The next day, after the migraine had washed away, I once again experienced those same feelings of both extreme love and gratitude for the way my daughter had chosen to love and support me throughout my own night of “final hours”.

When I tried once again to thank her for being so wonderful, she looked at me in confusion and said;

“Mum, why do you keep thanking me? I was only doing  to you what you did for me when I felt like my head was exploding?”

Her words really made me stop and think, not only about the importance of the way I had responded to her when she had been feeling so ill, but the importance of the ways that I respond to her on a daily basis and how all of the small kindnesses that I shower her with are now coming out in her personality, despite the fact that many believe that children like my daughter are incapable of showing  empathy towards others.

You see, my lovely daughter has High Functioning Autism or Asperger’s Syndrome and many mistakenly  think that children and adults with HFA/AS aren’t able to either experience or express empathy for the suffering of others.

Well, I’m here to tell you that my daughter and many like her, can and do experience empathy towards others.

Especially when they grow up being surrounded by both the benefits and the acknowledgement of having empathy shown towards the unique ways in which they experience every aspect of their lives.

So even though sometimes, when you’re busy being a special needs  mum  and you forget just how keenly you’re words and actions impact on the lives of your children, you may just discover that your children will find their own unique ways to remind you of just how important your words and actions are to them.

And hopefully you too will experience this reminder in the nicest of all possible ways.

 

When the benefits of the many outweigh the good of the few….

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These days, those who are considered the most successful in life, are also those who hold the dual abilities of being able to commit the most atrocious of actions whilst  instantly providing themselves with a sense of justification for doing so.

If  you look at those who have made it to the top of their fields, regardless of whether or not those fields are considered prestigious or dubious in nature,  very few of them, if any, could honestly claim to have never once used, abused or in any other way taken advantage of another, in order to get there.

Given that our society consistently tells us that it’s okay to lie, cheat or steal the pants off a business competitor if it better suits our own purposes to do so, it’s little wonder that this same message has begun to transfer over into everyday life.

Where often all it takes to make it okay to rip off strangers, friends, or even family, is the ability to convince yourself that your needs outweigh the needs of those you are taking advantage.

We’ve all heard of the stories of con men that convince their own elderly parents, without any remorse what so ever, to invest in their bogus business schemes, for no reason other than to enable them to get their hands on the family’s money sooner, rather later.

Or the drug addicts who think nothing of stealing from their friends, family or complete strangers in order to feed a habit which also provides them with a built-in sense of justification in that their “immediate needs” are more important than the needs of whomever they’re stealing from.

The saying that “all is fair in love and war” appears to have become the justification for almost any form of malevolent behaviour that one can think of.

This used to be a saying that was predominantly  applied to the dubious behaviours of those in the business world.

Where many of those in positions of power have been known to do things such as releasing harmful products, most notably pharmaceuticals, onto the worldwide market , in the belief that their products potential to cause harm were vastly outweighed by their products potential to create profits.

In fact if we look back at the history of medical developments, the vast majority of the work that has been carried out in order to create our current day medical break throughs, have been premised on the justification that the potential benefits of the many out weigh the suffering of the few, (upon whom early medical experiments were conducted on).

This type of moral trade-off, or justification, is also the moral device that provides many with the ability to experiment on animals.

So as a breed of beings we do indeed seem to have a propensity for believing that our actions, no matter how morally horrific they may be, are still somehow okay if they can be viewed as justifiable in any way, shape of misbegotten form.

This leads me to wonder just how potent a device for excusing bad behaviour justification has become in our own lives.

For instance, if you found a wallet in the street  with a few hundred dollars in it two days before Christmas, would you hand it in to the police, or would you choose instead to believe that the universe had provided you with an unexpected means of being able to afford those extra little Christmas treats you’ve been longing to buy for those you love?

Or what if your family were severely financially struggling at the time?

What if keeping the wallet meant the difference between you family having power and heat on Christmas day or not?

Would keeping the wallet under those circumstances be justifiable?

Dilemmas like this, on a small-scale, show just how untenable the concept of justification can become as a mode for defining the rightness or wrongness of our actions.

We all know that handing the wallet in, under most conventional circumstances, would be considered the morally right thing to do…. But….. My question is this…….

‘Can the keeping of the wallet any longer be viewed as the only morally right thing to do if one can justify doing otherwise?’

And if all it takes is a sense of justification to overthrow those once clear lines of delineation between right and wrong actions, then how much longer will it be before we lose all concept of a collective sense of right and wrong all together?

Disposing of the Myth that Narcissistic Mothers create Autistic Children.

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Over the last ten years there has been a ground swell of studies and books written regarding the phenomenon of Narcissistic Mothers.

According to Dr Karyl McBride author of “Will I ever be good enough? Healing the daughters of Narcissistic mothers”, narcissism is a spectrum disorder which, at its most severe, is clinically considered a personality disorder.

Some of the most common traits of narcissistic mothers, as defined by Dr McBride, are described as:

  1. Mothers who show little interest in the issues that their children are facing and instead seek to divert and centre every discussion onto themselves and their own needs.
  2. Mothers who lack empathy towards their children’s feelings and life experiences.
  3. Mothers who only support those aspects of their children’s lives which reflect well on them as “good mothers.”
  4. Mothers who usually only do things for their children when others can see.
  5. Mothers who focus on the life issues of their children only in terms of how those issues (accident, illness, divorce,) will affect them rather than on how their children actually feel or are coping with those situations.
  6. Mothers who appear to be more concerned with what others (neighbours, friends, family, co-workers) think of them in any given parenting situation rather than being genuinely concerned with the needs of their child.
  7. Mothers who blame their own failings on their children rather than seeking to take ownership and responsibility for their own feelings or actions.
  8. Mothers who are hyper critical of their children’s lives and consistently dismissive of their children’s achievements.
  9. Mothers who seek to exert an extreme level of control over their children’s choices, especially evident in adult hood when it contravenes conventional adult mother/daughter boundaries.

Many women who have recognized both the actions and reactions of their own mothers as narcissistic, have also expressed experiencing a sense of relief at the long overdue validation of their sneaking suspicions that their relationships with their mothers have been less than ‘normal’ and that the effects of this have been both debilitating and harmful.

Debilitating effects for daughters of narcissistic mothers include often growing up with the feeling that no matter what they do or what they achieve in their own personal and professional lives, they are never good enough, worthy enough or deserving enough of good outcomes.

These feelings often result as a consequence of the constant criticism, bullying, violation and invalidation of the personal needs that such children experience at the hands of their narcissistic mother.

In short, regardless of how well the world might regard the achievements of daughters of narcissistic mothers, they as people are often left feeling as if they never truly belong or are never truly deserving of good outcomes.

Because of this many daughters of narcissistic mothers express experiencing a constant sense of disorientation, as if they are always walking across shifting sands  and struggling with a feeling of internal instability, due to the fundamental disconnect that has occurred between their intimate, inner circle, maternal disapproval and their external,  outside world, approval.

These feelings of being disconnected in such a fundamental way from their inner and outer worlds, of never being good enough, of never belonging or of never being truly accepted by others, can also cause daughters of narcissistic mothers to develop an extreme lack of self-esteem and an inability to trust in either themselves or others.

As a result they may choose to withdraw from society in order to avoid the risk of being further disapproved of.

Recently the question has been asked whether or not there may be some correlation between the effects of having a Narcissistic Mother and the rising incidences of Autism/ Asperger’s Syndrome in females, specifically because of the identification of  the narcissists detached parenting style.

However harking back to the question of whether or not detached mothering causes Autism is reminiscent of the now strongly disproven theory of the “refrigerator mother” made popular by Bettelheim in the 60’s.

Bettelheim’s theory has now been recognized as a harmful and destructive  theory that sought only to blame parents of children with Autism and as a consequence significantly delayed any true development of an understanding of Autism for years.

We now know that Autism is a neurologically based developmental disorder that children are said to be born with.

Whilst it is true that any form  of abuse and neglect will always have a negative impact on a child; it cannot and will not cause a child to have Autism.

To think otherwise would be to risk setting back the many advances that have been made in understanding those with Autism.

To this end I would suggest that it is far more likely that in the case of daughters with Narcissistic Mothers and the incidences of rising rates of girls with autism, that there may well be an unfortunate collision of two  specific conditions occurring in what can only be described as a terribly destructive synchronization.

Given that narcissistic mothers often use their children as surrogates in their attempts to seek positive attention from others, having a child who reacts differently to the outside world or in ways that garner public disapproval, would most likely cause such mothers to further retreat from or become hyper critical of their child.

As such it is highly unlikely that narcissistic mothers would be either capable of recognizing that a child may have high functioning autism or Asperger’s Syndrome or willing to wade through the sea of complicated and often self-depreciating merry-go-round of specialists interventions required in order to seek help for that child.

The mere fact that more young girls are now being diagnosed with Autism, thanks in large part to the persistence of their mothers in seeking help for them despite having to fight against a sea of often out dated medical opinions, proves that the majority of mothers of girls with Autism are both willing and capable of acknowledging that their daughters are different.

Instead of running away from their daughter’s differences or becoming disapproving of their behaviours, these mothers are actively seeking to better understand their children.

This act alone indicates that such mothers do not fall into the category of being narcissistic or detached mothers.

Therefore, in this instance, perhaps the only link that may be established between daughters of narcissistic mothers and the rising rates of  Asperger’s Syndrome now being identified in females, is the fact daughters of narcissistic mothers are less likely to have received an appropriate diagnosis as a child.

Disability Care Australia: Giving with one hand – Taking with the other. A double whammy for both individuals with disabilities and their full time carers. Mobility Allowance Loss.

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Recently my son qualified for support from the eagerly anticipated, government initiative now called  Disability Care Australia (formerly known as the National Disability Insurance Scheme  (NDIS) .

For those who aren’t familiar with it, this scheme is meant to provide those with disabilities and their families the freedom and power to choose their own person centred support networks via the ability to nominate which service providers they would like to access.

However with Disability Care Australia, as with most things, the devil is definitely to be found lurking around in the details.

One of those devilish details being the fact that as soon as anyone who currently receives a mobility allowance participates in the writing up and submission of any form of support plan, through Disability Care Australia (DCA), they will automatically lose their mobility allowance.

That’s right.

As soon as you agree to the submission of your support plan with Disability Care Australia, you will lose your mobility allowance.

This means that far more likely than not, people will not even have had time to implement any said new transportation arrangements, before their mobility payments are cut off.

What’s more, alternative transportation arrangements may not even form part of the initial support plan put forward by Disability Care Australia, as many of their case workers aren’t even aware of either the loss of the mobility allowance or how greatly the loss of this payment will impact on individuals with disabilities and their families.

With the price of petrol sky rocketing, the mobility allowance for those who must rely on private family based transport in order to get to and from the places they need to go, has become an absolute must.

Now in my son’s case, he receives a mobility allowance specifically because he cannot catch a bus or any other form of public transport safely.

His mobility allowance is therefore meant to help cover the cost of travelling to and from college and other places in privately owned vehicles (the family car) that are both safe for him and come complete with a carer to help him transition from the car to his classroom .

This is the point at which the loss of the mobility allowance begins to become a double whammy for those of us who are full-time carer’s for our sons and daughters, because in essence, our loved one’s mobility allowance is not just a must have payment for them, even though they are the ones who qualify for it, but it’s also a must have payment that enables us as carers to adequately fulfil our roles by providing whatever mode of private transport is required for our loved ones.

So the cutting off of the mobility allowance not only impacts on the individual with the disability but also on their full-time carers who are going to be expected to continue to provide private transport without the capacity for their loved ones to offer any financial assistance towards the cost of providing that transport.

Under Disability Care Australia, carers can apply for a rebate that reimburses them 76 cents per kilometre travelled when providing said transport, however this requires the keeping of an accurate log book over a period of time.

Now I don’t know about you, but the last thing I want or have time to do, once I’ve settled my son into the car of a morning, is to fill out a log book entry.

Besides which, the reimbursement of 76 cents per kilometre does not take into account the fact that petrol consumption occurs while you’re stuck at traffic lights or caught up in traffic jams, as is so often the case around school drop off and pick up times.

So unless you are travelling great distances, it may not even be worth applying for the reimbursement.

For me, being a full-time carer means that life is often hectic enough as it is, especially around those typically busy times such as school drop off and pick up and I for one, do not need the government turning those already busy times, into some kind of documented and notarized business transaction.

Although I often jokingly refer to all of the running around I do for my son as being ‘Mum’s taxi service’, I am not in actual fact running a public service and I refuse to be expected to fill out forms as if I were doing so.

I just can’t help but shake my head in sad bewilderment at it all.

How can a support service that has been so keenly anticipated and premised on its politically promised ability to provide greater levels of independence and understanding towards the needs of individuals with disabilities and their families, make such a basic mistake in undervaluing the worth of the mobility allowance to all who currently receive it?

Shouldn’t the first rule of helping those with disabilities and their families be to make sure that you are not making them worse off?