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 if...it is for YOU?
what if...at 58 you heard it was all YOURS, for LIFE and from the beginning.
what if...you 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.

Monday, December 26, 2016

a seminal year - deep reflecton -Ireland-HSE-Family-Life

In honour and memory of Martin Naughton, left, RIP; with a great friend John Doyle - i may not be as diplomatic, but i am as strident in the protest through - disability activism
Like prison bars - they are on one side (Dail Eireann, in this case) and we are on the other.
fighting a system, with a personal vulnerability can take its toll on your life - all things change in such adversity - such brutish abuse of state bodies.
Passing through hallowed 'Trinity College Dublin,' on a sunny day - you reflect - I was educated in the University of Life.  Food parcels of the 70's did not extend to the College fees.
it was a very difficult year.  As you know we have a progressive neurodegenerative disorder and live towards the end of our lives, in a small and insular country.
SO much decided to go wrong in 2016.  But deep reflection on where we are at in Ireland is needed.
Deep reflection needed, on the value of both the human being, family and the older person is badly needed.
Most of all Deep reflection is needed on how the young and the middle aged are going to treat the least well off, those frail, elderly and disabled in what will promise to be the era of 'post truth' and 'in with the money' and 'out with the so-called wasters.'

Society is taking a 1920/30's look on the most vulnerable again - as the cause of the evils of the world.
Was or is it not really a gross selfishness for those who hold the high moral ground to blame someone else - because they can.
the reality is most of the wealth is held in the hands of a tiny minority in ALL countries around the globe.
the elite and the crooked politicians are forming a new agenda.
those with little means to transcend poverty and sickness are made feel scroungers and will have to have health insurance or they will die - this is the future - it isn't right.

lets go local for a while now and see how this is played out on the ground.
lets look at the divide between those who have the power and those who are sick and have none whatsoever.
the ratification of the rights of those with disabilities, will never change our lives unless we can ditch the amazing 'policy amassing' and start taking action to consider us as half way there to being a human being. Policy will not make us that, but action will.
the fact is - those who have a duty to care - don't want to see us as an equal.
if they do not, that is going to get in the way of any progressiveness.
I have seen no kindness within the institutions of the state this past year.

i was ditched so easily by a neurologist for actually taking him to task for not delivering on three major care plans put to him as our primary consultant and to which he hardly glanced and looked the other way in fact.
i took him to task as well, for ending in ED with profound head disturbance and asked simply "how could a young man with no patients, decide to stick a large needle into the back of my head causing a haematoma without any prior tests to see if this was the right course of action.  Did it fit the description of the issues i had and who gave him permission?"
No, i am not getting an answer, but in the new way of  'lack of accountability' the better option - for him, was to boot me out of his care remit and leave me high and dry in a country that has few neurologists at all.  There is no second chance when a man who has power can act so readily and easily as this and forget that a very sick person had a ligit question but no answers.  We also have the healthcare professionals in complete and utter denial of their roles in caring for the sick and disabled.
i think my case, that of my twin and myself, our issues as Rare diseases individuals, with NO clinical care that is of any use to us, no auxilliary care as in support and therapies in the community had met with - department head followed by another department head, giving me another department to contact and so we must have within one full year touched them all, and still no one has said "i will take charge and see that something is done here."

The system is fractured.  Someone else is always in charge.  They themselves will tell you that Burocracy is very weighty within in, but if they do not change that, nothing changes, if they too complain of how difficult it is to move things along, it is either an excuse (i believe it is) or indeed, its both the excuse not to change and the inability to change because its all such a convoluted mess.

You think you have the right department, look at their brief online within their own website and nothing could be clearer until they tell you otherwise.

Even i found, requesting another dentist at a public health facility caused such a stir and a new raft of abusive phone calls to me, "take him or leave him, he is a good dentist"
they put in place an investigation which takes months and i am left waiting for the answer whether i can get a new dentist and then they say no i cannot and then threaten me if i do not contact them within five days with the two given appointments options i basically will be out that door, but i will be allocated the man 'take him or out the door anyway" and too bad if you are terrified of him.

so we are in a new age, a very new age.

when we look at people in crisis too, many need the help of the services, none more so than individuals who were fleeing a county where they never left and entering another they never even visited, but transfer of care from one community care to another was so terrible it found the county we entered took a very different slant to its new residents than the one we left.
even though the managers base was basically the same, but the dispensing of services were very different.
there were none for us, and we fought all the time, the more we stayed strong and asked for help the worse it seemed to become.
alienation set in to become a vile hatred of the HSE in these parts.
the alienation they set up against twins was intensely felt.
we only wanted one thing - peace calm and care - even that was not accepted as they swiped that with black pen from the files, i was able to go back and see what was there as it was on an email.

we also have dynamic i just found incredulous.
how is it that only two medical documents are on my disability files?
how is it that one of these was rejected as bone fide by a barrister-at-law, no less.  Not  even a medical person rejecting this but a lawyer!
the person who was Dr. was rejected out of hand as being suspect to give a medical diagnoses even though highly respected in her area of professional specialisation.

you cant really win with this sort of thing.
we, in ireland have no mechanism to do so.
you can put in a complaint (mine are papering the walls at this point) but you can be called 'serial complainers' at a drop of a hat.
you can put in a complaint, but i have found few are actually investigated and those that are are investigated 'in house' so you won't get these upheld.
you can put in a complaint and be told to go to the ombudsman's office after that, another 'agency' of the HSE, so no transparency there either.
you can put in a complaint to the Human Rights Commission and mine languishes there for about two years now and nothing done, they are down to the bones of staff and all know by now that route is a useless one.
again we have the National disability authority another agency that is rooted in the core institutions never wavering on the side of the client base.
you can do so again to law but then you won't be able to go the legal route as no solicitor in ireland right now is doing pro bono work so if you poor and sick you are - fucked.

this is called the Irish way, but how the EU can actually allow us be so thrashed defeats me.
some rules do apply because we are within the EU.
you would never think so.

for instance if very sick we can get out under Cross Border Care - but we would have to take out a loan if you are poor on that and hope the HSE pay back.
or you can get out under the E112 Agreement but you cannot if a neurologist refuses to sign the forms, like he did the previous year.

so there are no avenues in ireland right now open to the poor and the sick.
money if you have it will get you cared, treated well and accommodated - outside of that, the morality of care is nil.
you can and will be thrashed.
those who have personalities that are demour, and gentle and have educational status but no money fare better than the emotional, truthful, brash and pained.

one voice of hurt and pain can translate so easily here as abuse and verbal abuse.
and one voice of hurt and shouting can be taken as a personal attack.
a stark reality check hit home when i heard a manager from my last area mention a team meeting in which i evidently 'hurt' my social worker, by naming his career before he returned to social work.
this is now remembered TEN years on, and a lot of water has gone under the bridge.
this tells me one thing.
they forget so quickly the reason of my pain and never ever forget that of their own.  that meeting was held to assist me to safety, this never happened - and they are very concerned ten years on i upset the sensibilities of a social worker, who was a craftsman before he returned to working as a social worker?
doesnt matter that to transcend a comment of such pain and distress which may have been harsh should have been seen in the light of context, why were we having this meeting?
because i was shot at in a social housing unit and i was screaming a heck of a lot of pain to try and get to safety.
so the context of the meeting was the client was in danger, not the social worker.
the social worker was sitting in a position of power and had a job of work to do, i saw he wasn't doing it.
if you name this you get a bad name.
in the end our fabulous health caring system, closed my case file and left me in with alcoholics anyway, men, all men drinking day and night and jumping walls to attack a frail and elder woman and finally she was shot at.
but they closed this case file as being a housing issue not a health issue.
i guess if you were housed there because you had a progressive neurodegenerative disorder, and it went pear shaped once they realised where they had put you, then if they feel like it they can claim its not their responsibility but someone else's.

this of course harks back to the trust of the is discourse, the above opening sentences.
will ireland grow up and take responsibility for anything i wonder?
will there be no end of excuses for the non ratification of the convention of the rights of those with disabilities.
will there be no end of passing the buck from one department to the next and no end to spend, spend spend, on themselves as over and above do not spend on the client base.
the Seanad Bar in Dail Eireann, is a cosy enough place to do business, but bruising experience cannot be bought out through the TD's tab on the slate, its felt by those who cannot afford such luxury.

they call us stakeholders, they, i call are people who would rather drive a stake through your heart and soul before they bother to even consider that that heart and soul is wounded already, sick and sad and hurt and needy.
do they care?
2016 saw me in a pained reality, no they do not care.
this extended further into your personal sphere, as family now are the next generation.
although they all are fabulous young people, we can revert again to the top of this discourse.
priorities are not with the sick, frail, elderly and their older relatives.
the new way is the idolitary of 'individualism' and 'money' and 'me fein.'
but do not look to another to help.

they will too make excuses on how hard their lives are and they have not the time.
i don't suppose my life at their age wasn't hard?
was it hard to queue for the food parcels, which they will never have to do.
was it hard to wash in a basin by a coal fire in a condemned social housing unit for years on end, no hot water and no bathroom?
was it hard to ignore your elderly neighbour or do some voluntary work while at the same time having your personal hard life, no i couldn't.
i did both, i did shopping, chatting, caring and visiting the sick and elderly even though i had not two brass farthings to my name and still do not.
how does it feel for the next generation to believe you are wealthy and i can show that young twirp my bank balance of 63c and say 'man of Tokyo - this is what your aunt actually has in disposable cash.'  
do i then see if he will answer?
he won't.
because someone else will be there to answer it and it's not his responsibility to say sorry.
oh for the new age....
oh for our new ways.

yes, about the bitchiest harshest blog i have written, methinks.
i have had the year of the snakes around me here.
there didn't seem to be a place i could look that i saw a way through the irish mire of muck, madness and crookedness, hurt and evil services who trash the stakeholders and give themselves a 131% hike in 'food and sustinence' in a given year from the one before, that is a bonus of 22k, and no one says a word.
this is what 'wasters, slouchers,fraudsters, benefits cheats and a drain on society look like...the coat i wore bought five years ago cost five euros - all things possible - but i am still a waster, sloucher, fraudster and benefit cheat - who can judge those in the x-imperialist buildings beyond?
significant shoe issues dating back to 2009 - these ones are HSE given, see the stitching around the top?  Well, that stitching ripped off my toe nails, yep, these shoes are for a person with a foot deformity, as the orthotist said 'the reason why you had your toenails ripped off is because you claw your toes'  "How so?,"  I answer, "if i claw my toes, how can the stitching above go anywhere near my toes?"  'ah' said the orthotist. Logic? This is Ireland for you and here i place my damn shoes (not worn as too painful) on the tarmac of Dail Eireann, on a visit, not for fun.
so one man within the system did this.  one man was not rounded upon.
but sure as eggs is eggs, the poor are slouchers, beggars, wasters, bleeding the country and fraudsters.
my university of life allowed me five minutes to speak to Europe on living in Ireland, speaking plainly for the first time ever on such a platform, little me holds back nothing - and never will - until i can be there again and announce 'Ireland has reached European standards.'  Until then, i will say it to Europe, - my country, my state continue to trash their sick and provide no real care.
small, ardent and defiant the work continues with our government - persuasion here, protests there, people with disabilities will be at the front of change because they have to be.  we will be there again on the 17th January 2017 - support us, come show a strange face to injustice in this country
the sick are the cause of all our ills so exterminate them.
and the healthcare system is in chaos so let everyone pay for it and if they don't then just go away and die, you are not even half human.
i rest my case, my horns are growing fast.
it can be so 'infantile' and 'simplistic' to even utter "oh dear God, there are the twins again."  the Simple fact is, the let-down of those with disabilities in Ireland is in such grand proportions that two will protest if we have to.
I say, the Horns will grow, and I AM NOT GOING AWAY!

One can be the Academic to learn about how to assess a person for a wheelchair, the other brings the colour in the notice that another has learnt and as a duo we can be a force to be reckoned with.
one thing for sure, don't rest on your laurels.


Monday, December 12, 2016

Please help through this Irish Petition to the Irish Healthcare providers


i can become so exhausted and ill

after a blast of filming by some tv prog or other on the campaign for care, you can be so shattered it beggars belief

our love for each other is massive, but the stress and strain of each other's illness and incapacity can really test this fragile relationship of sometimes torrid despair

we are 'special' to each other but in the context of being a twin, that is also very difficult, not what people imagine or believe, it can be lonely, difficult, upsetting and especially now we both are so sick and dependent on what each can offer to each other - many times not half enough or quarter enough

very early in my illness i really only had my babies, certainly at this stage i had no idea what was wrong with me, and less even cared.

a fight that saw us nearly break completely was the one for adequate and appropriate wheelchairs (won after five years battle) saw our health decline rapidly and now we believe we cannot take much more and need your help badly
this is so important to us as we havebecome very depleted and tired and weary.
i felt late tonight that i had to start this petition.
i hope that my blogging viewers will feel galvanised to help by signing this and sharing too, maybe on your own blog, tweet or on a facebook page, forum or other.
share to the media if you wish.

margaret got cancer in 2011 and every wednesday at the cancer hospital they had a 'pink wig' night, instead i bought the bowler, and so the bowlers and top has become our special 'emblem' of FIGHT!
our campaign trail began soon after, lack of care and rights swiftly became so deep in our lives we fought back, for ourselves but also for others.
this is SO urgent for us, we despair right now as so little has been achieved in our ten year fight.

so little is not enough and we do not have ten years more to help ourselves get a better care and to get expert help which Ireland cannot provide in the Medical profession.  This they have admitted as we are complex and rare.
My first 'out' under the E112 agreement in 08 to the UK Lupus Centre saw diagnosis where in Ireland i was told to go home and take the 'anti-depressants'  and left.

so rare many consultants in the UK have never seen this before, one stating we could be the only ones in the world, another too stating she has only seen this once before.

we are held against our wishes here, because one single consultant who is our primary consultant will not sign to get us over to the UK again for further investigations, assessments and treatment.  he will not sign even though he has admitted in letter form that there is little he can provide in his department.

another 'out' under the E112 agreement to another hospital saw astonishing findings on how we process energy - its not the same as 'normal' people at all!
yet we know many in ireland travel out to europe or the UK as Rare Diseases cases under the E112 Agreement which gives all with complex diseases this right to use in the EU which we are part of.

i consider myself none other than a normal, intelligent, average citizen 'crip' but equal in every sense of the word
the 'centre of excellence' and doctors we wish for do want us back to determine the elements of the disease process which has not been extensively examined, that of our muscle wasting disease and why it is occurring.
more than once we have felt utterly broken and dis-spirited by the battle for care
please sign this vital petition and spread the message far and wide as possible.  i would so much appreciate it and thank you from the bottom of my heart.

Wednesday, December 7, 2016

healthcare in Ireland - MY FEELINGS RUNNING AMOK

running 'amok' is not too strong at all on how i feel about living in ireland today.

a very serious and sick 'joke' by the Irish state as it denies its citizens equal rights.
it seems the lives of sick and disabled people are generally in a sick and sorry state and we are suffering.

on all levels i am finding it tough.
the admission that the ratification of the UN convention of the rights of persons with disabilities, will not now take place this side of christmas, something promised this year to great cheer, but deep down many of us had never believed them, that is the gov.

feelings are also running high with decisions of my healthcare and medical care management being made by all and anyone other than myself who seems to have no say in the matter.

this includes, utter denial of how unwell i am with my 'heavy disease burden.' they manage to successfully delude themselves, which they are purposely and intentionally doing to bring the care needs to the lowest common denominator then i am highly anxious that my care in ireland is being compromised.

i am living in a country which is apathetic to the cries of its most needy and vulnerable, i count myself as one.

the consultants who deny me a right to travel out for the expertise and care where once he agreed because now he is somehow pissed off because i found him wanting so he is in effect punishing me.

the denial of the healthcare providers in community care who will not allow us our say even though we have adopted the phrase 'nothing about us, without us.' (that is the HSE claim they embrace that phrase)

we, as twins voiced a really good plan of care, cost wise as equal and parable to any in europe and with no real clinical skills base here we are allowed get it elsewhere.
but we are being denied that too.

also the Irish council of civil liberties has it right in one when they say they know of cases where people have alleged being victimised for standing up to the HSE, this they have written about.  this i do know about.

denial too of the worthiness of the HSE which was voiced as dysfunctional by many sectors of society is having a real and heavy impact on those of us who need excellence and care and empathy to live a decent life at the end of our lives.

at present i have a clinically 'heavy disease burden' with no clinicians actively involved in making my life more bearable.

thats it, in one sentence and i could well leave the blog alone at that.

but what i will say when i say this, its terrifying to know for years i have been fighting for better and have got no where.

i could if i paid for it privately get it.
but i am but the shit the hse see me as and the government too for i have appealed to them too for help in getting a care plan together and overseas oversight, alas so far they turn the other way.

all i can hope for now is that the UN gets to know of what is happening here, and will smudge and tarnish ireland for being incredibly negligent in the way it deals with sick people at their mercy.

the UN stands up for the decency of the common man.
i am asking them to face towards Ireland and see it as it is, another broken promise made to them, the UN and all i can say we are a shame to the world with our feelings on our countryman as being next to useless, worthless and too expensive.

our brains tick on well and can be useful, if they chose to not allow us be so they are missing a very viable strong group of able and willing workers of their country and state.

to me right now my feelings are running amok