Saturday, February 18, 2017

awnyah todaysay: So we had a mediation process to sort the mess - d...

awnyah todaysay: So we had a mediation process to sort the mess - d...: ann writes from her hospital bed i call on the Minister for Health and the Director General of the HSE to look past the bureaucracy gone...

So we had a mediation process to sort the mess - did we? I call on minister for health on this one

ann writes from her hospital bed
i call on the Minister for Health and the Director General of the HSE to look past the bureaucracy gone utterly crazy that women, coming to the close of their days have fought for ten full years for a right to have a peaceful, quite and pain free end to their days.
ann was not up to smiling in so much pain
I call on the Minister for Health to see us as humans only wishing for what all wish for, to spend time with loved ones, peacefully at the end of their days when they are so ill and declining, which is the humane way of seeing two sisters struggling over just about everything for their health care needs.
The Director General of the HSE should be ashamed of himself, to consistently hear the stories put to him about both our case and those which are published in the media, on a daily basis, the chaos, the disarray but what more the utter agony far too many are experiencing at present. it IS avoidable to work in a dictatorship.  Avoidable to carry out a regime of awful, brutal, callous inhuman and torturous bad practise and deny your 'duty of care' the state government has given you full remit to implement best practise in the kindly care of its citizens.
the remit of the HSE is to care for the citizens of this state.  that is its only remit
stop hiring people that are inept and unable to perform their job for which they have been hired to perform.
the campaign of terror against sick people is noted by me, as far too many send me their stories, equal to that of the Kennedy twin sisters, the fight is huge.
it doesn't have to be this way.

the HSE was found wanting, by an eminent independent investigator, the HSE was mandated to sort the mess they had created for the Kennedy twins.
this the HSE was agreeable to.
they put to the mediator and only signed for eight hours of mediation, four of which they sat at a table after years preparing for this mediation with not a sheet of paper in front of them, staring at us as if blanked out by something that we were not privy to.

I do know now, the mediation process was a gloss of 'lets be seen to go through this, but also we will agree to do nada'
that is now what it looks like.

they never intended the Mediation to work.
we came prepared for a better way forward.
they came ill prepared with blank faces and staff at local level who have hurt us to the quick by their bullying, their name calling and highly suspect and irregular behaviours.

we will say here clearly that we have documented the abuse, inch by inch documented it, we have named highly regarded individuals who clearly state in writing that what has happened has been abuse.
one such person wrote 'the twins have been badly served by this state and particularly so in recent years.'

we also have stated 'why are the twins being left, it clearly looks as if one twin is looking after the other.'  this was an internal email.

we have had a statement of fact - Ann if its any consolation i never felt you were a dangerous but a kind person, that to the Director General, was sent to me in an email from Mr. Simon Harris TD the present Minister for Health, we had great plans to work with the people of wicklow to make it a better place and he was helping us.

but no, the idea of the HSE had it differently for us in Wicklow, lets say they nominated one twin to be labelled, and called guards on an older women weeping at the health centre, looking for help.
weeping at the age of 62 then, after a full night of weeping over her horrible situation.

it is unacceptable not only to call us 'serial complainers' but to call the guards to a health centre to sort a woman who was prfoundly distressed at 9.15am in the morning and needing help, its also unacceptable to follow this up by ringing the GP and claiming she came down in a tandrum and we didnt know why, we want to tell you we called the gards, is that defamation, data breach or what?  

she was banned from the health centre a week later and told not to appear unless by appointment or giving 24hr notice.

we had a veritable witch hunt going on down here.
i wish to remind all who read this blog, i was a community activist all my life, i helped people, i cared about people and i used action as opposed to words and wordage in any policy document that the HSE is supposedly upholding.
'Ask your clients 'what can we do for you' it states on their websites.
Yep you asked, we told and you answered basically 'feck off.'
it is not that easy if you are wronged by the HSE to 'feck off' and you will find the Kennedy twins will never feck off.
the Kennedy twins are not gone out of your lives, they could have been.  should have been allowed be released for both parties sake.
you could have made it far easier if you had engaged in a meaningful and genuine mediation process.
we had asked for direct payments, to organize our care so that all could be released from the painful discourse we are engaging on at present.
not only that we can prove it is cheaper than the way things are being done at present.
it is far easier for all concerned to trial a new way and make it work, then slog pitch dark along patching up, making do and arguing all the way because its not working.
why continue a path that is broken and long broken not with pot holes but chasms of destruction to the workings of the human psyche, body and intelligence.

you have dug this hole deep and the intent to do nothing is very real and clear to us.
but you did and always did have a duty of care towards us.
you did not have that duty of annihilation of two very good women.
you did not have a duty to destroy what was good.
you did not get any ones permission to demean, to torture, to debase and abuse your position of power.
you did not get my permission to besmirch my name so that you come up all rosy.
I have asked for genuine help from you.
lets look at a few things now, lets look at these wheelchairs i put up,

so its OK to give a gizmo like this which is 13yrs old to a person with a progressive neurodegenerative disorder, a while later it loses its back wheel and the patient goes into a wall.  this is acceptable?
this first one was a banger from hell, 13yrs old and too old to be repaired as the parts for it were not being made, yet you felt it suitable for a severely ill individual and caused her to crash into a wall opposite svuh, and you then say 'if you get a new wheelchair will that be it?'  that, from the Disability Manager!
Disability manager - you have a woman who has a rare neurodegenerative disorder, it will not be all, but it is at present or nearly all at present.
say it as it should be named 'a heap of junk'
look at this heap of junk that destroyed my psyche, my body wracked in pain every time i went out on it, look then to what you gave me.
bit of a difference?
here is the weirdo part of it all.
i have no disposable cash, zero, up to this year i have managed to pay VHI, but do not use it because of the lack of down payments i can give to private consultants, but part of my policy would mean i could have given you 6k towards it.
due to two factors which for two years you couldn't work out for yourselves, you decided to pay for the whole thing yourselves.
'who would own it?'
'what would happen if we had to take it off them for health and safety reasons?'  i kid you not, and they give the banger from heal above which defo was a health and safety risk.
so whilst you deliberated for those two years two women have significantly deteriorated.
we are all human, needing care and consideration - the way to go - MOST DEFINITELY - YES!
we now have these wheelchairs.
it is unspeakably bizarre you turned down 12k towards the cost of these chairs, and deny that 12k being used another way.
it is OK to feel the work of 'best practise' - it is more than OK to feel a human being for once, but all should be treated this way.  the fight was far too hard and made my health deteriorate further.
its unspeakable because we cannot get physiotherapy regularly for degenerating bodies but we could have released money up to do so, that money you refused to accept into the palm of your hands would have served my twin and i in physio for a full two years each.
that's good, that's really good.
that's economical, that's sensible, that's useful and that relieves you of suffering and us of suffering.

you do not like us?
but to be honest, we have tried to work with you and failed.
we have seen and experienced the operational stance you take and think it is vile and unnecessary.
we put a better way forward which we felt would release you from certain elements of 'minding the Kennedy twins.'
we do not need minding, we want a normal life and a peaceful life.
we have informed you of a cheaper better way which many are availing of, you refuse to allow us this last lump of freedom from a grip of a vice.
you refuse to allow us live.
you are annoyed and you are vindictive, you want us to suffer, this is written in the paper of cases in the ombudsman's office, the Human rights commission, Europe and also the Council for civil liberties.
you are just so not getting it.
Ann and Margaret Kennedy just want to live out our days with peace and kindness as companions, with care and compassion with fun loving helpers, and kinder all round.
we do not need this.
i am writing this from a hospital bed, and knowing all the time the utter chaos you have put us through because you felt it OK to do so.
it was never OK to destroy.
you have a chance to rectify it now.
i offer you a smoke of the peace pipe, i offer you a way forward, as always i have deemed it viable, useful and purposeful for all.
direct payments.
no one wants to fight large institutions, no one would wish it on their worst enemy, but the HSE cannot say they are doing their best on this one.  the HSE have been given a vast array of alternatives to our care and having our needs met and never met us half way let alone listened to us.
the HSE just plow the furrow badly and wish never to win the championship, i cannot understand how they do not listen to women of sound mind, who can achieve a way forward and visualise both a better way and a cheaper way to work our care for the remainder of our shortened lives, now very sick and depleted.
i cannot understand how they claim to listen to their client base and consistenly have cotton wool in their ears.
i just cannot believe this is happening.
what i say is being replicated across the land of Ireland. 
there must be a ready supply of cotton wool in many ears it seems.


Sunday, February 12, 2017

Abuse as a method of control (HSE IRELAND) and other large Irish institutions

Abuse, used to degrade, demoralise, defame and cause harm is unacceptable in any society.
Abuse which is used to cause so much harm as to make a sick or disabled person contemplate suicide, make their physical or psychological health deteriorate, to me is a crime.
lets call a spade a spade.
those who bully and harrass another, usually a person who is unwell or vulnerable to such an extent to cause lasting harm should be up in front of the courts, with or without the 'ratification of the human rights convention for people with disabilities.'
ALL agencies who conduct a systemic, abusive system that is akin to torture and inhumane treatment should be before the courts.
those who condone it as a methodology should be before the courts.
those who sanction it, accept it and turn a blind eye is complicate in a crime.
it is a crime to abuse your fellow human being causing serious harm to their quality of life, their basic rights to be equal in their own country, if denied them, is a crime.

we are in such a situation in Ireland.
i am writing from my bed where i will be until i can get into a hospital bed.

i am writing after hearing of yet more abuse of a sick and disabled woman.
a woman of high intelligence brought so low she began to even doubt her own self and her confidence was ebbing fast.
i am writing as a woman who has doubted, severely doubted my ability to continue on in the face of such systemic abuse by the state of ireland and the healthcare system.

why do you think my fight, my main fight has been one where i receive the 'permission' to get out of a system of abusive power over my whole life and existence.
why is it that, some can have this right handed to them by virtue of them being well, and therefore not needing a healthcare oversight.
so if you are well, you will not be harmed by the state in terms of your health.
i chose, and i demand a right to have an equally happy, fulfilling life as an equal, that is even before the ratification of the rights of people with disability in the human rights convention.
NO country should stand by and accept what is going on here.
when its systemic, it is endemic.
programme after programme we hear of the tears, the pain of the suffering of ireland.
we hear of severe deformity of bodies, as bodies fail and the government of the day deny them the right to walk tall and yet this is seen as a financial issue.
its a human rights issue and one of equality.
while those that can pay can have a straight back, those who cannot and when the healthcare system is in such crisis can have backs that curve to a degree of 96 degrees, this is shocking.
we have the other groups, the adults, who have become sick and disabled, some shoved into nursing homes in their 30's for want of supports in their own homes.
and we scream from the rooftops that Ireland at least have accepted the 'social model of care' and Ireland believe that we should have care in the community and in people's home.'
how can we get it so wrong?

how can we have policy after policy saying all the right things, but the workers at the HSE command demanding you silence the sick, abuse the sick and ignore the sick.

it is not 'legal' to whip away staff from a sick person's home, leaving them unable to cope by themselves entirely.  it is illegal to deny them the right to have a bath and the right to get into a bath because of some vindictave stance of a disability manager who after wining the right to have your own bath then denies you the right to use it for two years, but you can use it if you put yourself in danger.

how did i save this famous bath, saved for its therapeutic values when no therapy is ever offered.
i saved it through the present Minister for Health who intervened.

how did i overcome the wording of being a 'dangerous person'
i have not.
it is wrong to defame an individual, claim they are such and never give them a right of reply and let that hang on files and in offices this side of where i live presently.

it is wrong.
anyone considered dangerous has a right to either be proven as such or disproven as such.
in the present situation you can be dangerous one minute and then fine the next, they (the HSE) can call the guards to the health centre, this is over and above how wrong it was to call us 'serial complainers'  it is also wrong to call the guards on older people who come weeping to the health centre, depressed, crying and suffering only to find the police have been called and a week later banned from showing your face at the public health centre.
this is what is happening in ireland.
you can actually be banned, from seeking help!
you can be instantly labelled in macrabre style, and never find a way to have a right to a reply, correction or vindication.

why do you think i do not want to work with the only healthcare system we have in ireland if its so wrong to abuse in such a manner.
why do you think i chose to do my very upmost to gain my rights to live equally, as normally as possible, the way i chose, away from abuse.

Direct payments WILL come in, but right now i am suffering so greatly i want mine now, because i believe wrong has occurred in my case.
i believe i should be set free from abuse.
i should be allowed to live out a shortened life in peace, away from abuse and bitching.

i have to end such a damning blog on the people within the HSE.
remember, we are thinking about workers who are trained.
i want to ask the very reasonable question = how are these people being trained?
i also want to ask the very reasonable queston - if some can be kind and caring why is it that we keep the abusive players in the Irish healthcare system?
we have very kind and wonderful individuals, all wishing to do their best for their clients and help their clients.
but we then have the complete opposite, those who never get close to their client base, who forget what their jobs were originally (all before becoming managers would have helped in the caring professions).
if you are divorced from sick people and jingle money you are never going to see your clients as people, human beings, you will see them as a STAT someplace.
and then we have the way we think in ireland and the way we have a communication system from hell.
eg 'copying and pasting' accusations from one department to another, and from one organisation to another.
we have done alot of people serious harm by thoroughly bad practises, which are unsophisticated, confused, chaotic and unprofessional.
mistakes get made when the teams are not professional.
most of Irish mistakes in the Irish healthcare system is through dreadful training and dreadful stigmas, accusation lych mob style dynamic always only asking the questions after the horse has bolted.

I want the HSE completely and utterly out of my life.
when i am told that the HSE is all we have.
then give me the good ones, i want to sack the terrible ones.
i also want ownership back of my house, my home, my psyche and my relationships, they can't have it everyway.
stop the abuse.
give me and many others the peace we need and want to end our days with our disabilities.

Monday, January 30, 2017

'serial complainers' Ann and Margaret Kennedy

who wants to be smashed all over the newspapers and have the minutae of their distress displayed for all to see.
but sometimes it is recognition that wrong has been done that prominent public representatives and organisations have brought to book the terminology and labelling of twins aged 64 who asked for their medical and auxillary care to be met, meeting such annimosity that we doubt the relationship i s reparable, we ask for a Direct payment so that we can get on with our lives.

for those who missed this piece, i will copy and paste here the link.
Ann Kennedy (left) and her twin sister, Dr Margaret Kennedy

i wish to say that finding analysis of a further document regarding HSE Corporate Plan 2015-2017 which i personally anaylised over a year ago i find the following extraordinary in light of the above.
it implies that the HSE do have a remit and plan to build a high quality health service for a healthier ireland and that they are living and upholding their own 'values of Care, Compassion, Trust and Learning every day.'

if this is the case, lets bring it on, for we have reached 2017 and Ann and Margaret Kennedy are asking and valuing that too, a quality of life and a healthier Ann and margaret, this is the sole purpose of the Corporate plan, to make ireland healthier.
alas, we also did a bit of a slump way down past macedonia and others for our healthcare service but in terms of our lives, is it necessary to butcher it as i see this no where implanted within the corporate plan itself.

here it is:
Building a high quality health service for a healthier Ireland
Health Service Executive
Corporate Plan 2015-2017

Snippets from the HSE corporate plan 2015-2017

I particularly want to recognise our staff for their resilience and perseverance. I am hopeful that we are starting on a more positive journey, one where economic recovery is showing improved signs of a more stable financial environment for health in 2015 and beyond.

In light of the HSE resiliance – the moving forward on a positive journey should be all inclusive of the client base, for your resiliance was our horrorsville, while we had to deal with the tenacity of all your departments, hospitals included to use as mantra one word only “No”  and we were resiliant to get through that, so can we please have some signes of a more positive journey?

Our values bind us together We will try to live our Values of Care, Compassion, Trust and Learning every day and in all that we do. Our values influence our attitudes and behaviour towards those to whom we provide services and with whom we have professional contact. We must be more open to learning from our past mistakes and innovative in our drive for continuous improvement. We must prove our commitment to these values when things go wrong.

I would like to feel that this trust and learning, now that you have learned we have been treated so badly as noted.  We want you to prove your commitment to these values when things go wrong

Our Vision sets out what we want to achieve and how we
will organise and deliver our services over the period of the
plan. This plan does not set out in detail all we intend to do
but gives a broad sense of where we are going and what
we want to achieve. Each year the detail of what we will do
will be set out in our annual National Service Plan.

Your vision to achieve to do what you said you would do, has not produced a solid plan of action since we started mediation.
You ‘claim’ you want to make our lives better and that we should be having a better life.

Mission  People in Ireland are supported by health and social care services to achieve their full potential „ People in Ireland can access safe, compassionate and quality care when they need it „ People in Ireland can be confident that we will deliver the best health outcomes and value through optimising our resources

A  really good Mission – can we begin?

·      We will provide care that is of the highest quality
·      We will deliver evidence based best practice
·      We will listen to the views and opinions of our patients and service users and consider them in how we plan and deliver our services Compassion
·      We will show respect, kindness, consideration and empathy in our communication and interaction with people
·      We will be courteous and open in our communication with people and recognise their fundamental worth
·      We will provide services with dignity and demonstrate professionalism at all times Trust „ We will provide services in which people have trust and confidence „ We will be open and transparent in how we provide services
·      We will show honesty, integrity, consistency and accountability in decisions and actions
·      We will foster learning, innovation and creativity
·      We will support and encourage our workforce to achieve their full potential
·      We will acknowledge when something is wrong, apologise for it, take corrective action and learn from it We will try to live our values every day and will continue to develop them over the course of this plan

can we begin?

Your very first Goal

Goal 1

 Promote health and wellbeing as part of everything we do so that people will be healthier We want people to live fulfilled lives and to be as healthy as they can. We want the health service to have a positive impact on the health and wellbeing of everyone living in Ireland. We will support people to be as healthy as they can by promoting healthy lifestyle choices.

I would go along with all this – can we begin?

What you will do –

·      Deliver person centred community based services which support independence and choice for older people and people with disabilities

can we begin?

·      Increased levels of supported living in local communities

Is it possible to begin?

·      Improved compliance with Safeguarding Vulnerable Persons at Risk of Abuse Policy

can we begin?

Goal 2

 Provide fair, equitable and timely access to quality, safe health services that people need.  We must make it easy for people to access the services they need. These services must compare with the best other countries have to offer and be safe and available to people in the right place and when they need them.

As we do not have these at present the Rare diseases Plan, the E112 agreement are ALL there for those who cannot get ‘the best other countries have to offer and be safe and available to people in the right place and when they need them.’

WE had needed all this a long time ago.

We will deliver care around the individual patient and service user and put the patient at the heart of what we do. We will do this by developing a modern model of integrated care across our hospital and community services so that people are treated appropriately and conveniently to where they live.

WE would like you to begin, we are not being treated appropriately in either hopsital or where we live – this you admit, and we would like you to deliver this care around us, indivdual patients and service users.

We will support older people by providing a range of
services including home care, day care, respite care,
short stay care and rehabilitation which will avoid the
need for admission to hospital.

Let me remind you – we have reached this stage
What we will do

·      Implement a number of key Integrated Care Programmes including older persons, chronic disease prevention and management, child and maternal health, and improve patient flow
·      Develop programmes to improve the quality and safety of mental health services for adults, children and adolescents
·      Provide a range of home and community supports to enable older people to live independently for as long as possible
·      Develop services for people with a disability so that they are supported to participate in society and reach their full potential
·      Provide palliative care services and compassionate end of life care

can we begin?

How we meausre success

Patients and service users are involved in developing their own care plan  
Clear and comparable information and advice available to support individuals and their families in choices around service provision  
100% of patients receive their day case or inpatient procedure within 5 months of referral

How Ann Kennedy and Margaret Kennedy measure success  - the same as how you measure success!

Tuesday, January 17, 2017

Week Two January 2017 - Roll on HSE fighting and for Healthcare

Well, its rolling on, so they say.
the new year has begun.
christmas is but a speck in the eye, and the HSE the bloody big log.

They too are still rolling on, so they say.
into - the new year.

Paddy Connolly Inclusion Ireland and I have a chat, a serious chat.
it is not so much about THEM, it is about US as equal citizens, but not so equal,  Margaret and 'the banner' for equality, freedom and independence.
On radio today my twin queries Finian McGrath TD with special responsibilities for Disabilities, about the reasons why our area doesnt allow 'Direct Payments' for personalised budgets, and also the issue around the utter embarrassment of not having human rights equal to the rest of Europe.
the same questions answered in the same way really.  He mentions that the budget for disability has been greater to the tune of 30million.
you are fooling me, my sister, the public and most of all - disabled people who continue to see a spiral downward of supports and care for themselves and their loved ones.

i can truely say my 'end of life' is no retirement.  I am not sitting quietly reading the novel i never read when too busy at 21.  I am not catching up on countries to travel to that i couldnt when bringing up children.
i am not writing the autobiography/memoir, yet.

i am fighting every day for the same things i was fighting for ten years ago.

alongside of which i am fighting consultants who ditch their patients at a drop of a hat against the ethical guidelines of the GMS, proven as i have rung them twice and given the same ethical evaluation of treatment - twice, by two different people.
you do not ditch your patients and leave them high and dry, months on end in high anxiety with no one to turn to with a progressive neurodegenerative disorder.
this you do NOT do.
you can request for the patient to be transferred and behave decently, civilly and professionally,  not like a spoilt brat peeved beyond what his hair roots can cope with.
Ringing the Qualities department of this hospital i asked a very nice kindly man how much do these doctors know about how patients cope with severe illness and the intrangigence of doctors?
how much do they fully understand for instance that before them is a severely ill person, coming to them as single individuals, no support with profound/severe hearing loss and also on the autism spectrum and who is worried and anxious about her future.
does it matter that the doctor is failing to offer healthcare that they need and should have.
does it seem to even make a difference to understand those who are not receiving care will become even more anxious and those on the autism spectrum, with far too much on her plate will one day begin to become far too distress to handle the blank face of the professional across the table, deliberately refusing care, deliberately not answering questions and deliberatly deciding not to understand what the patient is requesting or saying.

the fob offs are terrible.
no one said an austism spectrum disordered person is an idiot or lacks intelligence in my case.
most are not idiots, when we see neglect we see neglect.
i SEE neglect every way i look so i do.

some of these men in the hospitals need the course now being offered to HsE staff because sure as eggs is eggs they need some courses in patient relationship skills.

what does it matter how bright and brilliant they are if they are abusing both their power, their position and their expertise, by denying the latter and abusing sick people.  There is no higher power or excellence in this behaviour.

i hope all patients who are treated badly will begin to face these arrogant doctors we have in our system.  without censure they live and carry out a reign of terror on public patients, especially women.
they target those who are unsupported by the male species by husband or child.

they make the patient out to be some kind of demon, villian, or worse.
the patient ceases to be the sick one, the patient is supposed to treat a doctor with kindly words and kid gloves because they are fragile flowers who need to be stroked.

they are no more fragile than weeds.
they do not need me to stroke their egos, they do that amongst themselves.

it leaves a patient in agonising anxiety when she knows she has been abandoned.
Not in Ireland for sure, in a UK centre of Excellence, trying to determine why i am so very ill.......
i will end here by saying that finding out two lymphoma markers raised one in 2014 and one in 2016 and nothing done about them, had me in a spiral of depression, there are doctors caring for me who SHOULD have known about these and done something about them.

i have no solace that i am an equal citizen to those who have the full whack of vhi healthcare.
i am in the gutter, as we emulate America, god help us.
God help those who suffer in ireland today, the sick, the elderly, the fragile of spirit and heart, the disabled and the mentally ill.
all receive their fair share of horrendous abuse.
this abuse stems from the professional forces within, those charged with the care of the people of ireland no matter if well and able but also the vast majority older and some now very frail and needing the kindness, i for one, never knew love or kindness, i thought it might begin some day - soon.
it never did - it doesnt look as if it will come by here some day soon.

Tuesday, December 27, 2016

Autism/Asperger are words for another person

Autism is for another.
Asperger Syndrome is for another.

HIgh functioning autism/asperger syndrome is also for another.

what is for YOU?
what 58 you heard it was all YOURS, for LIFE and from the beginning.
what heard at 58 that YOU are autistic with Asperger Syndrome and yet are high functioning to a degree that given the right environment, many if not all, would never even know.

My Asperger didn't just 'come-upon' me at the age of 58.
I sought it out.
To find out after 58yrs of total incomprehension, utter mis-interpretation and a lot of pain, anguish, hurt and bullying was neat (and expensive)!

You really would want to know a reason behind a lifelong isolation where there was no help or even escape.
You really would want to know if you could change this, for the better or get a far better understanding so that the links you had not had could become 'formed' with experiential knowledge, learning and bravery to go forth with new insight.

Austism too, Asperger Syndrome too had the 'issues' wrapped in other people's mind and formulated a sort of persona that was NOT how you felt but how THEY felt towards you, as a person.

If misunderstood, anyone would want to see changes both from oneself to progress in connectedness but also to share this new insight with those who once thought differently but may see a different meaning in how to perceive a family member with autism spectrum disorders.

High functioning adults, especially women can go all their lifetime without ever knowing they are on the spectrum.
High functioning adults, mostly women can face derision, explusion, ostrocisation and cast aside as mad or bad or both.

The intensity of feelings even for a high functioning woman with autism spectrum disorders can be emotionally draining both for her and for those around.

A person with autism, as i have experienced it, can be so high wired its exhausting.
a person like myself loves everything and hates all.

I find that being misunderstood the hardest to face and always have.
You want to be loved, to belong and to be part of others' lives.
it didn't happen for me, but it is now, kinda.
yet, mistakes are often made and it is not that easy for an autistic person to change their dynamic to suit a neurotypical.
we can try and we do, but why is it that we have to do all the changing on this one?

Is it time to reflect then on who a person is?
i mean, do we not consider others more gently if they didn't have autism?
Can we accept for instance, a person who is crazy and extrovert with a great social connect and who has many friends but is irresponsible and lazy and not grounded?
Do you accept that person for his/her fun and spirit and with no tarnish of a psychological nature or mental illness definition?

There is no tarnish of a psychological kink or mental illness for those with autism spectrum disorders either.

its quite amazing on some levels to be so in tune with all things, feelings so intense that joy can be found in minutae rather than a larger bigger picture.
You can find joy in a sunrise and having breakfast in a shed sitting alone in a tiny piece of heaven.
Living alone is not for the faint hearted.
Being alone so constantly is a fear too awful and i feel it.
But aloneness in beauty and having that 'spirit joy' that is utter bliss is not everyones morning cha.

It was like that as a child.
The very reason i got into trouble and still do.
The blousy vibrancy of expression got to far too many and i exhausted them.
the blousy enthusiasm to share my joy of the bugs, bees and creepy crawlies in the garden outside, was a tad bit overbearing.

I can giggle now at it all.
It must have been a weary load for the siblings.
Belting around like a wired up bouncy doll of an individual drunk on nature, wildness and pure delight was not of a child growing in a fashion for a mother - post war, who would rather see me demure and silent.
I was 'odd.'
But then of course this can change so readily, for the world is not that easy on 'difference'.
What if all goes pear-shaped when you too have to realize its not going to be this way forever?
YOU had always wanted to belong.  The day would have to come when you realized you didn't.
That's the hard bit.
It hit very hard indeed.  I guess it would when your little world turned into having to be a adult now and you couldn't do that in an acceptable fashion.
You see, if people had not tried so hard to darn well tell me I had to be very different to the way i was then, maybe a good few decades of hell on earth would never have happened.
it would also be useful to aid a person who is severely deafened from birth by giving them hearing aids, to get through school and academia, that too, may have helped me in my communication deficits.  So i am supposed to be a successful autistic human being at communication par excellence when deaf as a door post?
That my friends is the educated sensible start to allowing a child with autism cope to some degree no matter how small.

It was not the age of enlightenment for sure.
But so be it, it can have a casting, lasting effect on perception throughout and its this that is the hardest to surmount.
Not the blasted autism traits.

There is no harm in autism traits.
i am ok with them, very ok.
Emotion is a good thing, if i am overly so, well i am overly so.
but bending my ways is not going to make me less so.
Bullying will bring out my extreme reactionary ways for those who are personally extreme with autism or asperger syndrome attributes, we react through profound hurt.
many may laugh it off - not so a high functioning autistic adult, especially a woman who is told she is bloody neurotic and mad.
I like the quirks of self.  They are fun and pretty harmless.  
I laugh an awful lot and have a wicked sense of humour and can quip and snark really well so i can.
I can be loud brash and bouyant.
I am ok about that.
I can love the world, the good earth that is.
The soil, the land, the flowers and dirt.
i can love it with a wild intensity you would be jealous of.
i do not love hurt and pain, i see too much of that.
if i could i would wipe it from all who suffer but i cannot do that.
but why if you are a neurotypical and proud of it, would you want to be so fffing hurtful to an aspie who feels too much and hurts already to pile on the hurt with such crass unthinking, unfeeling abandon?

If you meet this Asperger woman in her wheelchair, don't add to the patronizing shit of giving that 'smile' for being in the wheelchair with another type of shit of 'oops, there goes the mad one in her wheelchair.'
If these words resonate badly, i say they should.
i am a human being who is different and disabled.
i am not so different and disabled that i have not the feelings of a person who isn't.

i stand and sit as a human being first, trying to be human and ending very human at the end - very dead.

So if you see me remember - there are children out there beginning the way i did.
make sure you don't give them hell for being something who they are and not someone they will never be.

Make sure though that handling a child with an autism spectrum disorder does take intelligence and some thought.
A child with autism should not be allowed run riot over the world, its bad for him/her and terrible for all to see, witness and then go on to blame a harmless, unknowing kid who is only doing what comes naturally to them.
Like all children they too have to be brought up and nurtured.

It can go badly wrong if the parents and society do not have intelligence to match the learning and the resources that are now out there at a tap.
it wasn't so, post war, which brought its own war for myself.
don't allow it happen another.

And while i end this missive I would like certain medical people to know that
some of you are most definitely autistic.
So, you are in good company.
Thankfully some of your methods I never learnt and am grateful.
I don't take kindly to arrogant, spoilt and brainy autistic professionals.
I believe you behave badly.
i believe all whether autistic or not can behave well and humanely.
Therefore do the right thing.
Be nice to me and i will be nice back.

Push your luck and you will get as good as you give.
i am unerring in the arrows i fling and it hits a target like none other.
Alas, there is also 'hell has  no fury like a woman scorned'.  SO normal! So watch it.

Thats my excuse and i am sticking to it.