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.

 

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?

No Longer Invisible Darling Girl

seventhvoice:

No Longer Invisible Darling Girl….. a beautifully written expression of what it’s really like for a mother to walk alongside her daughter on the pathway towards a diagnosis of Asperger’s Syndrome……

Originally posted on A View From My Summerhouse:

It’s been bad. It’s heavy. Bring on whatever it has to be, I can take it, but please don’t let my daughter suffer.  There is nothing worse than watching your children go through the hell of despair.

Today I wanted to write a light-hearted post about the birds visiting my garden, about my cats, about the lovely rain and the sunshine, but I cannot.  The words evade me.  I am lost inside a murky shadowland, staggering about looking for some kind of light, any kind of light.

My daughter suffers, entrapped in a world of isolation, hopelessness and yes, rage, that only someone with Aspergers can understand.  I am her mother and I think I understand, but I don’t, not really, though Lord above, how I try.

I try to explain to people what it really means for her to have Aspergers.  Yes, she went to school, gained a handful…

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Cyber-bullying – Exposing the Autism Bullies that hide behind their computers.

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This woman and her daughter are Autism Bullies and proud of it too.

Now normally I wouldn’t go to such lengths to expose the activities of people like these, but this time I’ve had enough.

This 50-year-old woman  publicly attacked a  13-year-old girl with Asperger’s Syndrome on Facebook.

She called the girl a “slut” and accused her of being “high all the time” because she always “seemed out of it.”

She then went on to forbid the 13-year-old girl  with Asperger’s from having any contact with her child at school.

Claiming that the girl with Asperger’s Syndrome had become a bad influence on her daughter.

The woman’s daughter then went to school the day after her mother’s attack on the Asper girl and told all of her classmates, who of course had seen the whole attack unfold on Facebook, that her mother was right and that the Asper girl was indeed a “druggie slut.”

The  impacts of all of this on the Asper girl involved have been catastrophic.

Her mother reports that she has lost the few friends that she’d managed to make at school and has been told that other parents are telling their children to stay away from her daughter just in case the rumors are true.

As a result, this innocent Asper Girl has developed a fear of attending school and has lost any sense of the self-confidence that her family had been working so hard to help her develop .

So please take a few seconds to look again at the above photo and ask yourself , just what sort of example is a ‘woman/mother’ who attacks a child with Autism over the internet, setting for her own and other people’s  children?

Now ask yourself who the bad influence is?

I’m pretty sure it’s not the Asper Girl.

Not by a long shot.

I vote that we expose bullies such as these at every opportunity.

After all, Facebook works both ways…. if the bullies can see in….. then they can be seen too.

 

Autism and Reverse Discrimination – When Special Needs Equates to A Lack Of Consideration

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I went to collect my almost 17-year-old son from College today, only to find myself being dragged into an impromptu meeting with the head supervisor of his Special Needs Unit and the parent of another 19-year-old student.

So what crime had my son and the other student committed that had the Special Needs Unit in such a tizz?

Well, my son and his friend, had decided that they‘d had enough of being surrounded by people all day, so they’d cut their last class and were found sitting, talking quietly together outside the SNU on a bench.

Oh my god!!!!!!!!!!

What an apparently, absolutely awful and completely inappropriate thing for two young adults with Autism to choose to do!!!!!!!!

How dare they even try and act like “normal” young adults who are capable of making their own decisions regarding their state of mind and choose to take up a small piece of quiet time at the end of the day for themselves, instead of entering once again into a noisy class room.

For making this choice, both my son and his friend were not only hauled over the coals, but both had their parents snapped up in the College car park at pick up time and dragged into an overly serious meeting regarding the “consequences” of said actions”.

I’m sorry but  personally I felt embarrassed to be there, in that meeting, with those people, who were all condemning my son and his friend, for  making the very choices and taking the very actions that they undoubtedly see every other non-autistic student at that College  being able to make for themselves every day, without so much as receiving a second glance by their teachers, let alone suffering the indignity of a reprimand from their head supervisor in front of their parents.

My son chose to go to a main stream College for a reason and that reason did not include him being treated as if he should hold fewer personal rights than any of the other non-autistic students at that campus.

He chose to go to that College because he wanted to continue his education in a ‘normal’ environment and be viewed as a ‘normal’ student.

Yes he has Autism and so does his friend, but that shouldn’t automatically mean that they both forfeit the right to act autonomously occasionally, should it?

Neither left the College Campus.

Neither committed any acts of vandalism nor even tried to do anything particularly wrong.

Neither were being loud or in any way disrupting the learning experiences of  other students.

Neither were being inappropriate with each other in any way.

All they were doing was talking, quietly, on a bench that could be easily seen right outside the window of the SNU.

In comparison to some of the actions of the  ‘normal’  students on that campus  whom I’ve seen walking around swearing loudly, pushing into each other and even in one extreme case punching holes in the wall, my son and his friend were thoroughly tame, well-mannered and despite being without ‘teacher supervision’, were well-behaved.

Yet both my son and his friend found themselves being spoken too as if they were naughty 6 year olds instead of being 17 and 19 years old respectively.

Never once, despite all of the things I’ve seen on that campus, have I ever seen any other students there, being spoken too as if they were an errant child instead of a young adult, by the staff .

So I sat in that meeting, much like my son, cringing from the injustice of it all and realizing silently that speaking up, in this environment,  would simply never be an option at all.

I watched my son grow  paler and paler as the head of the Special Needs Unit grumbled on  and on at him and wondered why it was that this supposedly educated and well seasoned disability support worker could not see the enormous and incredibly negative impact that his words were having on my son.

My own  sense of hopeless sadness growing as the effects of the blows that each negative word, spoken to  my son, had on him.

Taking from him the strength of a head held high and reshaping  his body with deliberately hunched shoulders and a bowed head that averted his gaze from everyone in the room and instead remained stoically focused on burning holes into the floor, with his sad, angry eyes.

When the grumbling had finally come to an end I asked my son if he had anything that he’d like to say but his mouth had formed itself into a thin hard-line.

His words were once again locked inside of him.

He was going into shut down mode and all he could do was glare at the floor and shake his head.

Now, instead of looking forward to going to College tomorrow, as he normally would,  my son is terrified that he might once again make the mistake of thinking and acting for himself and perhaps risk being expelled because of it.

He is equally as terrified that when he goes to College tomorrow that his friend may no longer want to remain friends with him.

It seems the tirade of today has done nothing but reinforce the sense that there is some kind of invisible separation between the rights of my son and the rights of other students at the College.

The reactions of the staff  have done nothing but induce fear within my son.

So accordingly, I can’t help but wonder just where the equality is to be found in any of their dramatic over reactions?

I agree that ideally, my son and his friend should not have ditched their last class, but, what College student isn’t equally as guilty of occasionally doing the same thing, only without all the encumbrances of the embarrassment and fear, that my son has now experienced?

Doesn’t anyone there understand how amazing it is for my son to have a friend that he feels he can genuinely share his time with?

Why does it always seem, that the very measures that are put in place to help my son, too often end up hindering him?

That instead of giving  him a sense of empowerment, these measures end up robbing him of the right to direct his own personhood?

Crappy Parenting is a Spectrum Disorder

Originally posted on Laughing Through Tears:

Dear Random Internet Strangers:

Please stop telling me that I don’t love my children. It’s sort of judgmental, considering how you’ve never met me. And while you’re at it, please stop telling me that I’m a bad parent. That’s just a given.

April’s been a harsh month. It felt like everybody with an internet connection decided to honor Autism Awareness/Acceptance/Ambivalence Month by gracing us with their opinions about how badly we’re ruining our kids. I’ve personally been told that I hate my children if I hate autism because I am unleashing my own anger and frustration down on their unwitting little heads, and I’ve also been told that I hate my children if I don’t hate autism because it means I’ve totally given up on them. Apparently I am simultaneously doing too much and not enough therapy to help them (because it is both a complete waste and utterly necessary)…

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Sterilization whose decision is it? The fine line that parents of teenagers and young adults with severe cognitive disabilities must walk between honoring their childs human rights or committing ‘acts of violence’.

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A  new Senate inquiry into the sterilization of people with disabilities is reigniting a decades old debate within Australia.

One of the key questions this inquiry will be asking is whether or not anybody has the right to choose sterilization as a valid option for another person?

Especially if that other person doesn’t have the capacity to speak for themselves.

In one of my previous posts http://seventhvoice.wordpress.com/2012/05/21/the-techniques-of-bias/ I explored the ways in which the very distinct form of language used to frame and dictate the parameters considered valid within the sterilization debate, act as  gate keepers of thought, preventing even the most liberal or fair-minded of us from being able to make any clear distinctions as to just whom these laws should and should not apply too and how.

To which I stated:

Most of us agree that disability or not, there are certain human rights that are, or at the very least should be, considered mandatory for all human beings.” The Techniques of Bias.

I still stand by this statement however,  I would seek to question just when it is that the human rights that we consider to be indelible and at all times in the best interests of those involved, cross the line into becoming inhumane rights?

Parents of teenagers and young adults with severe cognitive disabilities, particularly those with girls/young women are facing what can only be described as a double-edged sword that is continually slicing away at them within this debate.

The example I gave in my previous post in ‘the-’techniques-of-bias, regarding a loving family who had requested sterilization for their severely cognitively disabled daughter, and had been knocked back three times by the Guardianship Board, find themselves once again in the firing line within this debate.

They are being held up and accused once again of trying to steal their daughters human rights away from her by requesting that she be sterilized.

Yet no matter how cold heartedly these parents are being portrayed by those who wish to abolish the ability of parents to request sterilization on behalf of their severely cognitively disabled children , I know that the idea of sterilizing their daughter for sterilization’s sake, is absolutely the last thing that these parents wish to engage in.

They don’t want to have to be a part of this fight.

They just want to do what is right for their daughter.

Far from seeking to remove their daughter’s human rights by applying to have her sterilized, they perceive themselves as trying to add to their daughters human rights by giving her the best opportunity of improving the quality of her every day life.

As parents, they want nothing but the best quality of life for their severely disabled, 6 foot tall and incredibly physically mobile 20-year-old daughter, who has a disintegrative developmental disorder similar to that of  severe autism.

Although 20 years of age, her cognitive acuity hovers somewhere around that of  a 2-year-old.

She is non-verbal and requires 24 hour constant care.

For this family, achieving the best quality of life for their daughter, means alleviating the stress and the trauma that she experiences every time she menstruates.

Fortunately, most of  us are not faced with having to help a 2-year-old in a twenty year old’s body who becomes so highly distressed during her periods that she regularly engages in acts of self harm whenever she menstruates.

For these parents however, such acts include their daughter trying to eat her own sanitary pads, smearing her menstrual blood all over her body, face and home,throwing herself at walls, bashing her head repeatedly against the toilet bowl at the sight of her own menstrual blood, and becoming so highly agitated and hysterical that medication is required to calm her down.

Speaking out publicly about their situation they state that “as parents they have tried several less invasive options to try and prevent their daughter from menstruating including two different forms of contraceptive pills, implants,  and  a menstrual management program, all with “disastrous results”.

Her mother states that “the moodiness caused by the contraceptive pills we’d tried only further exacerbated our daughters anguish….. we’ve had broken furniture, scars from where she’s scratched and bitten us, and my other daughter had a whole clump of hair pulled out of her head”.

“No one should have to feel as angry as my daughter does and put up with having those side effects from medications. I just can’t imagine putting her through this for another 30 or 40 years.”

“To me, that’s cruel”.

“That’s inhumane”.

“There is just no dignity in any of this for our daughter. She doesn’t understand what’s happening to her and (having her period)   is stopping her from being able to enjoy those things in life that she would usually be able to enjoy.”

Both parents therefore viewed sterilization as their last and only hope of enabling their daughter to retain both her dignity and her quality of life and stated that being “knocked back by the Guardianship Board for this procedure has left their entire family traumatized.”

“Unless you have lived in this situation you don’t really understand it”.

“I just think it’s wrong that people can vilify you, criticize you and judge you,  when they don’t really know what it’s about unless they have walked in your shoes”.

“Any decisions we make about our daughter are about making her already incredibly difficult life easier for her. It’s not about us. It has never been about us”.

This mother’s bravery in once again speaking up and asking that her own daughters human rights be considered on an individual and a ‘what’s best for the person concerned’  approach, indicates that there must be room made within any legislation regarding this issue, that addresses the very complex and complicated issue of cognitive disabilities.

Especially considering that many within the disability community and activist groups view the sterilization of people with disabilities as “an act of  violence amounting to both torture and a form of eugenics designed to do nothing more than improve the human race” (Frohmander 2013).

When spoken about in these terms, sterilization becomes seen as “an abuse of a man or a woman’s fundamental human rights” (Frohmander 2013).

Given the terrifying history of sterilizing all people with any form of disability that has in the past, held sway, I can well understand why many in the disability community are pushing for a ban on the sterilization of any person with a disability within this latest Senate inquiry.

However, I do questions, especially given the situations of the parents I’ve outlined above, whether or not, in all cases, a parent requesting sterilization for the betterment of their child’s life, must always be seen as being equal to either “abuse” or “committing an act of violence” against their child?

As it stands in Australia right now, it is possible for a third-party, either a Guardianship and Administration board, or the Family Law Court, to legally uphold a parents request to have their teenager or young adult sterilized.

Given that there is a mountain of legality involved in making such a request the decision to press forward with any request of this kind is not one that is made  lightly by the  parents of teenagers or young adults with any form of disability, let alone a severe cognitive disability in which the body, for all intents and purposes is seen to “function normally”.

Yet this is no longer an issue that revolves solely around the rights of those with physical disabilities or mild intellectual disabilities, who can speak for themselves and whom I thoroughly agree must have every right to make their own decisions about each and every aspect of both their bodies and their lives, but it is also an issue that must enable those so endowed with making any final decisions on behalf of those with severe cognitive disabilities, the capacity to treat each request for sterilization, from a person centred, best outcomes approach,that encompasses a greater understanding and awareness of the needs, and therefore a broader understanding of what it is that encompasses the human rights of every  individual that comes before them, regardless of the form that individuals disability takes.

I’m yet to be convinced that we should be seeking to treat this very serious issue as if it were a one size fits all dilemma capable of being fixed by a one size fits all piece of blanket legislation?

What do you think?

Special Needs Moms – A Look Inside – by April Vernon

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Okay….. So today lets look at the positives of parenting a special needs child…….

Bigotry 101

seventhvoice:

Bigotry 101…… Anyone involved within the Autism community needs to read this post and understand that disagreeing with another’s point of view is not bigotry, it’ not even close to being bigotry, it’s simply a difference of opinion. Nothing more and nothing less. Honestly it makes me cringe sometimes to see those within the community attacking each other over such differences in perspectives. Especially when we are all trying to achieve the same things; equality, acceptance and understanding. So why is it that some within the Autism community seem so utterly unable to offer to others the very qualities they are demanding for themselves?

Originally posted on Living on the Spectrum: The Connor Chronicles:

In the autism world, there’s a word that is brandished about quite regularly, as a means of shutting down conversation.  You’ve probably seen it.

Bigot

Before I go any further, let’s be clear about the definition of that word (you know I love my definitions).

Definition of BIGOT

: a person who is obstinately or intolerantly devoted to his or her own opinions and prejudices; especially : one who regards or treats the members of a group (as a racial or ethnic group) with hatred and intolerance

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So a bigot, then, is someone obstinately or intolerantly devoted to his/her opinions and prejudices.  Let’s use this definition to exam some of the situations that have occurred of late in the “community.”
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A few months back, another blogger said something jokingly, that an advocate took offense to.  Fair enough, I concur that what was said could have been…

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