Invisible Lives

Pardon the poetry but some months are so awful nothing else will work. It has been decades since one would mistake me for a poet but the most raw subjects will not be formed into sentences with ease.

 

Invisible people leading terrified lives
Unheard as well as the words we summon are taken as other
When words will not come dismissed as having issues
When they come slowly they are again issues.
It is a terrifying thing to walk among those judged as people
To depend upon them and know that you are in fact a hostage
They can and have hurt you.
They will again

A word sends you flying blinded by all but the desire to get away
Words you were taught do not hurt. They do.
You do not have to fall down a case of stairs because of this blind panic
The panic that comes from being seen as less worthy of anything useful
The fleeing to most confirms that.
If you could speak easily you would spit out the relevant research
No one actually cares that if a word you have heard often sends you so fast
You are in fact already hurting more of the time than not
Dismissed again with less than a proper exam as you are not worthy
Not of the care those unlike you get
Not of concern that your constantly over—aroused state needs looking into it

It is, after all for those who understand brains a sign that calm has too long eluded you
Brains are your area but they who can sneer the words of dehumanizing would not think this
You will be dropped off
Without proper care, lie in pain and terrified
Wonder what it would be to be an actual person
Perhaps just as bad you think as that seems a process of trading truth for something else

Those that do it control your care though
You want someone to know but have never been able to call strangers
Your request is refused, you point out the dubious legality of this
They decamp to the truck to follow the edict that nothing you want done will be.
A hostage of disability or the smug feeling that you are others too control and spin.
Wrong has been done but if they can get the their version out first …

No one comes of course.
This feels like re-run
To make it worse levels of how little you count have kicked in
Fired by your pharmacy you try to create enough of a balance of things so that this is not fatal
Invisible lives so unworthy that the potential for death a fairly clear ethical line
Need not apply to you

Devalued lives, unvoiced fears, where is my voice?
Tears are shed into the dog.
Accustomed to licking them from the face he performs the service again.
Choke out a few words for him on how sorry I am that he is stuck with me
He could have a happy human.
One viewed as a full person with the rights of others
Then again they might consider him their owner and likely have others to help when tears flow
The sensation of panic will not go away on its own and looking at the medication left
The worried math of evoked potentials
The work that should have been done by he who felt he could indeed deny something vital over profits.
I have for years sent back the form he demands I fill out.
So sudden action seems cruel as I am used to kindness in a pharmacist
In the former owner as well
Red faces and stabbing the air he has spit out he is both
The new owner and a pharmacist this enraged bully confronting me at the door
Of what passes for my home.
The stress and fear apparently not his concern other than in theory they are
That I may not be able to cope with any of the ways too work around this firing
should probably concern him but why would they?
Many professionals have ethics but they apply not to the likes of one such as me
The death sentences fly in

Society trends in a direction so horrific that this is one of many similar incidents
The worried math of how to prevent death is my concern
Another gash in any facade that I am a person
The progress through which you become a non-person is ongoing
You sometimes forget.
Sometimes in the brief joy of being among people who see you as you
You are lulled into thinking this is a view that might catch on
In the days that follow you will reflect on how often you have made this mistake
Chiding yourself for blaming yourself for the natural desire to lean into a better identity
To believe others may not be blind whatever caused the quick dismissal
You are wrong though.

Asking for a phone call to be made you are refused
Autism is something you feel like blaming for this form of hostage keeping
That would hardly be fair though
As society has in theory provided support based on what you cannot do
Then never really monitored if they comply
So now they too are terrifying as one cannot be supported by those who will cage you
Who are alarmed that the agency who has every right to know and thus they will not.

Invisible, unheard, damaged and scared
Not by the neurology that allows so many to discard you
By the many who have to view you as less than to get on with …
I have no real clue what drives this desire that some must be so much less than
It is common but it’s utility is lost on me

Invisible, unheard, hurt and terrified.
Sobs hit keening levels but no one will ever hear or come
This is not a reality with a place for the likes of you
You are paying the full cost of having forgotten ever that this was the case
Rocking as the dog likes the salt from your face you croak out Bill-C-24
The dog no more like other dogs than you like people wages his tail
If you had croaked out good-boy he would have barely noticed

Days go on
The dog not afraid of course as you are a reality he is used to
The fear escalates and escalates
The math of thresholds and evoked potentials has you hoping most of the risk has passed
So too has anything that might help with the terror

On the day I was born a party was held
I wonder why as the 49 years that followed do not support it as joyous event.

 

Digital StillCameraPurk

 

Advertisements

A Painfully Analogous Blog Description

A few days ago on Emma’s Hope Book Ariane wrote about the realization of how frustrating it must be to communicate something clearly by behaviour and have everyone not realize what it was you wanted.

http://emmashopebook.com/2014/03/04/picture-day-moments/

I thought at the time that the grand frustration of an epic day like picture day for both Emma and her mother on realizing the people at school had not been able to work out what Emma was trying to indicate and had thought her family wouldn’t want a picture was so sadly perfect for every day life as autistic.

The last few years have been horrible on a scale so epic for me that even in a life where little goes right I have started to wonder. At multiple junctures when things could have perhaps made some progress towards decreased stress, some return to functioning levels I had once had one day catastrophically bad decisions were made by those with power over me.

In the post before what apparently was a worrisome silence to some of my followers (Sorry about that) I described the horror of having a medical issue I did know needed attending to but lacking the ability to do that myself.

People who live lives often dependent on how those who are supposed to help them won’t be surprised I don’t think that the first casualty of this was my case manager In a way that seems baffling despite in theory understanding my challenges she felt upset by the week that had proceeded her showing up to see if I was alive. That is having done all the communication I thought I needed with her and needing a period of total rest from even my digital life this combined by my, in theory, understandable inability to simply move into a mindset where she could take me immediately to a clinic when she came by made me impossible.

I understand I am difficult. That most of the things that make me so are quite well known as being part of autistic life doesn’t seem to make me easier. Why is hard for me to totally understand. I proposed immediately that instead she dispatch someone to accompany me the next day but I could almost see the stress storm rolling in.

So of course she quit. At the moment of me biggest need while she has been my case-manger it seemed like the logical thing to do. Protect herself from the horror of having to cope with me one minute longer.

Things had been going downhill for some time. Part of her panic I am sure on the issue of if I was alive or dead was that if I was in fact dead the issue of her failure to reengage with me in the community which if I had been dead would have come up as an issue for sure. I am sure that as an issue versus my actually being dead was a bigger stressor. No one seems to have much hope that I will live anyway.

However bad that was though I admit while this case manager had problems understanding me and while I stressed her out in ways that leave me feeling more guilty than betrayed by the timing of her exist because it is after all always the disabled person’s fault when people can’t understand them sigh…

It sped up my being pushed into the arms of a program that I had resisted for months. My reality is that despite having spent part of an overly long period of time in hospital qualifying for services specific to autism the people who deliver them will employ more resources showing I don’t than anyone can to say I do. If you need intensive services and have the notion they should be appropriate to your needs well that’s one you will have to give up or face the prospect of having your life stripped of all that gives it meaning because ethically a person with as horrible health and as horrible scores on measures of daily living competencies cannot live alone.

This knowledge hasn’t changed and I could apparently be ignored almost completely for months at a time but when things worsen ignore the knowledge they have that I should not be on my own becomes something they will solve either by putting me in a group home that always has vacancies as it is all females. Does it bother them at all that everyone else there is elderly and has been on such strong medication for a lifetime that their ability to do much at all is no longer there and that I have nothing but gender in common at all? I guess not.

So while agreeing with my doctor 100 percent that the only time forward progress had been made was when I had intensive daily support the people who would provide it worried me. People kept dismissing how much it worried me but it turns out I was not worried enough.

The program in question came into being to treat the intersection of mental health and criminal justice. In my area addictions are a mental health issue. One which for some people is about as untreatable as my depression. The mandate of the program had been broadened so they could become the dung heap of last resort without regard to the needs of the people places on it but the number of days you need to take up in other more expensive beds still seems to have made it hard for a law-abiding, non-addicted, autistic person with physical health in a state of collapse to ever qualify.

I am not minimizing in any way those who struggle with addictions to the point of being in a revolving door where whether it will open leaving them under a bush, or in one form of penal bed or the other is about the only random bit. None of them qualify for a shelter bed most of the time because of course if you have used substances very few will take you.

It’s a horrifying life in it’s own right and one where the system also fails. I still don’t think setting it up so they can fail me even worse from the get go with a program that all protocols come from a model of service delivery that doesn’t intersect with my reality at all is a solution.

I had been without a depression for a dozen years. I do not think of myself as depressive on the whole as when I get them they are inevitably for autistic reasons. I often think they are untreatable just because the continuous feedback loop of the stressful ways they go about it makes everything about how I function so much worse that I do indeed feel hopeless but who wouldn’t?

In the years since this started the capacities I have had have sunk and sunk which is predictable. A lifetime of viewing my speech as unreliable I could usually predict all the same when I would have issues. Enter the team I have had to dub the sucktastic support team.

The claim to make decisions in partnership with their clients. I do not know what that claim is based on because my case manager quickly claimed I was the one client they found this impossible with. I thought really. So often do team members excuse themselves because someone needs rounding up from under a bush for a probation appointment that I think it really cannot be the same guy. On a caseload of the chronically unhousable, some of whom if too long goes before the relative stability of one penal system or the other, will meet tragic and grisly ends. I don’t feel that I belong on the program with my house and address, and some work but to be the most difficult on it is certainly over-achievement in the field of being difficult even for me.

Because this team won’t plan and for most of their caseload cannot plan they have an astonishing capacity to render me speechless. While once the kind of triggering events that would leave me without the ability for some time were almost entirely, with a few exceptions, limited to medical types of situations now they happen so regularly.

The same failure to see my behaviour as communication occurs. The same inability to reconcile the capabilities I have with what they see and what people say I need. I cannot say they try hard based on available evidence.

All initial enthusiasm about me as at least a win in the housing column faded. All concessions about how they handle me which they agreed to they revoked. Most unforgivably for me the agreement that any reduction in service would only occur after consulting with me. 20 hours after that was said someone came by to tell me it had been reduced.

The spontaneous fury that rose in me scares me looking back. It happens. At the time I was attached to a medical vac. treating a complication. In the swift flying of my hands to my face that became separated from my leg but the person leaving this news was one of only two people on that team who even listen so after she was gone and I had collapsed in tears and sleep for days to come. Sleep to ensure more horrors did not happen in the hopelessness of this betrayal and knowing the spin that would go on my behaviour.

As one of the few who treat me as human at all in the way people treat humans I felt guilty it was her who had to view this but feeling guilty for something as uncontrollable as that is not useful or even fair to myself. A few weeks into this program my doctor expressed concern about how much I seemed to be blaming myself for things that are not controllable but while on one level I know it a dent has made with the consistent refrain of try harder. Do better. Be something other than who you are in other words.

For people who believe in functioning labels as static and meaning anything as they are used in autism I am too “high functioning” for the sort of epic meltdown that occurred. This is nonsense of course but that is is their view. A view which they will not check against any book or source from myself, or my doctor (both equally suspect as our versions of my reality are too similar) but they will cling to.

The chose early on to have in a two week period 13 different people see me. I found out at the meeting where I was told that the worst was over and that I would be consulted that this was based on a reality that isn’t mine. They felt without the need to check that in a crisis if a stranger had to attend to me it would be worse. In reality in the kind of crisis they would know about they tend to dispatch strangers anyway but as more of an imploder I would be so deep within myself who if they did send anyone. Was there would barely register. Still no need to ask me before embarking on something which no one left here thinking wasn’t harmful to me.

In the logic of service provision that them coming made me worse. That I spoke seldom and often backed right up as levels of stress increased and no support around the very key issues of eating and drinking happened this was not their failure. In my every day stress they did not reach what seems like the more logical conclusion to me that they should indeed space it out a bit. That they should support the basics of life which was a large part of why I needed intensive support.

Of course that would have meant thinking my behaviour or lack of it had meaning. I don’t really understand how people miss this. I was still in elementary school I am pretty sure behaviour as communication comes up and nearly everyone on this team has at least one degree and if not at least a certificate where this should come up.

Sometimes between my own experience and reading that of others I think newly minted “experts” have every useful thing fall straight out of their brains because how do they get from they are making me worse without wondering what role their own behaviour had in this all the way to seeing me less?

I still don’t know. They keep changing their minds about what drove that decision. At first they said I had so many medical appointments that it would make no real difference. They make my appointments though and having communicated multiple times I cannot take more than 3 in a week that too has been ignored of course.

Now they say I too often closed the door on staff and refused to cooperate so it was a waste. Of course they had made the first service reduction decision after a string where they seemed understanding of the horrible stress I was under and no one seemed to care if I responded or not and most fled without even trying to connect. Those who persisted a bit often found eventually I would respond but that would put them further behind of course so why try?

They had also made the second one all the way to three days all of which inevitably have appointments so no other aspect of my life is supported before any of the incidents they found recent problems. My failure to adjust to a sudden change of plan and being too polite to yell and scream I tried to say I was expecting you in half an hour and I cannot quickly get ready and then do groceries before physio.

I plan my day well in advance and faced with a sudden change how to even find my clothes in the time before physio was in doubt but shopping is stressful. Physio no picnic. Combined with a sudden change and it was not going to happen. Losing all words when my trying to explain was met with well they didn’t have time to do it any other way I shut the door and went and curled up on my bed both in fear and frustration. This was not a person I trusted to render events accurately even as they stood.

Twice in the past month I have been called to account for all the ways I suck as a client. They don’t call it that of course. The first time that autism was a bigger part of the diagnostic picture seemed to upset a person who last knew me 20 years ago when support in the community was no only real but it was possible to have more of it than you cold handle. Any downturn in my health then was handled by a swift return to a hospital setting so while the support team he worked on seldom saw me at my very worst my overall issues have not changed.

I would not have said the equally ridiculous that he too had changed in all those years. Yet it is a source of a conviction I could do better if I was more personally responsible. That I could only be this is we first get a long stable period, regain some skills that were based in another environment and don’t starve to death first seems sensible to me but not to them.

When I said on being summoned for a second time to a meeting that was about the managers responsibility to protect his teams from the horrors of dealing with me so if he could find a way to drop me he would. (Bad luck for him as of course many of their clients are difficult in ways the average member of society would refuse to deal with so there is no mechanism for it)

I had said if it was going to be a long list of my failure to be personally responsible for things I either never had been able to do or hadn’t been able to do in a long time I would go so there was an attempt to re-frame it as a business partnership.

I was a bad partner in my own health. Gee? Really? They quickly refused to communicate by email. When if ever I see my caemanager I don’t know. To this day she thinks a surprise you have an appointment today approach is okay but I am a bad partner. As he framed it as a business partnership I had to point out that those tend to be equal. We would have of course had all the various contractual obligations of both parties well hammered out ahead of and in contract form and when they failed to do so I would use the legal mechanism available to seek recompense from the courts.

However stressed I am don’t say something stupid and hope if I can speak I won’t be able to point out that as a quick change in how they wanted to frame the same grievances I won’t be able to swat that down. Of course this does me no favours as this seems “high-functioning”. I can kill his argument re-framing in under 2 minutes but be rendered speechless over and over by sudden changes or stupid decisions. I must be making up part of it.

That had come up. That I had to be acting to some degree because how else do I make sense? Gee I don’t know because there are lots of autistic people just like me and indeed one of the current improvements in the DSM is that notions of capacity versus demand are right in the definition. But yes it certainly makes more sense to think a person with skills so epic at pretending to be screwed up would do it to torture them rather than say go off an earn too much money by putting those skills to work in the entertainment industry.

I was also guilty of using the protections available to me as a client of a program where some actual abuses had occurred. This was causing a paperwork nightmare. So too was that the nurses who see me for wound care have felt they need to leave a long paper trail as they are not primarily responsible for supporting my eating or anything but that I was losing weight at an alarming and visible rate was something they felt they needed to act on and document that action as my discharge from their regular attention was looming.

In the past 6 years I have led countless volunteer teams in an unrelated industry entirely and being known for high standards I would have fired any one of my team members with even the smallest amount of responsibility for being unprofessional enough to whine to their subordinates or anyone else in a way this epic. Sadly I cannot fire this guy. The government pays him a ridiculous amount of money and he wants to spend some of his time blaming me for their failures to wrap their head around me? You bet I will take that up with people above him.

In the reductivist narrative of my life that would reduce the value of it because of what I cost society what about what it costs that nearly everyone who earns part of their income failing to support me appropriately is paid handsomely to do so? Shouldn’t their pay be based on meeting my needs at least to some degree? Shouldn’t as much time at least by spent meeting them as meeting about me and deciding what the catch phrase of the month is about how horrible I am?

When you are a child in the best case scenario you will have a parent who is apologetic at the failures of people to realize you have competencies and however you communicate your needs or fears it is communication.

As an adult there is no such protection. In the health system playing well with others is valued so they almost eerily form visions of me that the bulk of the team can recite word for word. The people who refuse to do so still indicate they need to be a part of the team because they are among the most disposable.

So I can’t speak out with the few who do listen because I don’t suck enough as a human to make their work harder which it is apparently if they speak against the group think about me.

When I was just entering adulthood I had notions of a life nothing like this. I would collect degree after degree and that I did not remember to eat it would not matter. Droves of students hoping to win favour with me would always be around to supply useful things like food and drink whether any of them set themselves apart from the herd or not enough for me to learn their names. I had seen this very thing with professors I knew did not bother with such trivialities as the names of those eager to be of use as one said to me he remembered me and went on to say although he is required to teach two courses and supervise multiple graduate students that was true of less than a handful of people. An echo of how lonely my father had warned me when I was still quite young life would be.

Of course life did not unfold according to a plan that would have seen me live in the seldom labeled as such but fairly sheltered environment of academia.

The sadness of the life not accomplished is a sadness but it is not frustrating in the way the failure for things to improve for autistic people is.

I have multiple physically degenerative issues and the prognosis on one of those seems to be in mid revision to even more grim. There is my autism. If I had never felt any grief or sadness or hopelessness maybe I would not somehow also be considered a mental health issue but as the service providers of easiest access they are hard to escape.

My entire life for months has been lived with the horrible knowledge if they do not improve or try in any way to meet the needs they indicated they understood I had I might die. In my most miserable moment I think the paperwork nightmare explaining how someone referred with that as one of the critical issues in need of intensive support dies on their watch is some sort of revenge but I would prefer to live.

During the meeting of the long list of ways I suck at being a good partner in my health I did eventually flee. Fight or flight kicks in. It’s something in itself worrying as a few times it has kicked in and where I might wind up was potentially not safe.

That day the final time I was ordered to sit down I didn’t. I know they can kill you with their words. The hopelessness of them never believing anything real about the real you while simultaneously refusing to consult my doctors notes on the matter is too much.

The inane complaint I am somehow not trying hard enough when the amount of effort it takes to be with them for a single minute or to have persisted through the worst 27 months of my life how do I respond?

If effort was the solution I would be so danged healthy I could work on my agenda for assuming control of the entire planet… As dictators go I would be awesome truly. When I was in politics while an awesome background person that I was unelectable was a given. Yet one never gives up ones hopes of power and how swiftly I would reverse all the expensive ways we fund abuse and ignorance would be a help.

One of the strange problems that goes with my autism is I can in fact communicate well and in a number of languages. Except when I can’t but somehow the times I cannot or even that a communication disorder is consider a key part of it means no one has to listen to me. Any issue with communication is always mine by definition. The well paid people who currently completely refuse to even try to communicate with me don’t have to. What would be the point? I am impossible.

If it were not that the people who do not find me impossible are all pretty similar as far as having the same values I live by I would start to wonder. The depressing thing is that being honest to the degree I expect and ethical is not the majority position for the people with power over me. Yelling at me to “Speak damn it” and then letting me out in traffic while crying so hard I nearly got mowed down is in group speak assertion not abuse.

That’s my reality. I don’t know for how much longer it will be because if I actually manage to fire this team my posterior will wind up in a place where I can not have the things that give meaning to my life. Equally unsuitable but somewhere along the line my value as a person around here sunk so low that things that matter a lot to me don’t matter at all to those who make decisions.

The difficult thing is they have not been able to strip me of my legal competence although two people have warned me that as soon as my current doctor is transitioned right out that will be quick to remedy and I know they are right. It can be half way removed by telephone and whatever they say about that not being enough that almost any doctor would simply sign off on it being fully removed without much worry about the ethics of it is certain.

I sometimes think beyond the fact I have yet to pull of a nice short blog the whole depressing reality of my life can’t be very appetizing for people.

That little alters in some fundamental ways from the tiny child I was once convinced it was my kindergarten teacher about to be in deep trouble for the scandalous way things were run in what didn’t seem very school like but which I was powerless to communicate and equally as powerless when locked in a battle of wills with a larger adult (unlike my parents she didn’t have the sense to know she should have surrendered as soon as she saw I could walk) . To now. In between there have been times where things proceed in ways that I would want but the underlying fundamental reality of how swift people make the wrong decisions and judge you in all sorts of ways hasn’t changed.

There is no point in screaming because while understandable that would violate the rules of the health authority. They could then totally deny you services until you were a corpse. Well granted I would have to scream specific things but it is a good thing that so seldom have I reached for profanity in my entire life that even now if I yell at all it is more on target of what is true at least until I flee.

I never try to judge life of any kind but the ongoing trauma of having mine judges and devalued combined with the knowledge that any time I fail to behave as expected that will be one more grievance in the long list against me makes me more than sad. I am not even sure I know a word to describe how I feel.

That the every day usually unnoticed by others because they take place away from eyes that might care frustrations of living this way are difficult. I cannot imagine being anything else of course and I do not think because people so horribly fail to meet my needs that that makes autism tragic as meeting them would be simple if a paradigm shift happened where however I was communicating I was valuable and when that communication was shutting a door or fleeing as fast as a person as physically challenged as I am at the moment it would still have to be taken as not me behaving badly but as communication about an intolerable situation. A failure to meet a need.

It’s never picture day when you are an adult but the mindset of those looking at your behaviour doesn’t seem to have changed.

Implosion – Or the Benefits of Being a Mound.

I’ve been imploding lately. It’s quite inconvenient because people don’t see it happen. Once you have your ability to signal that you have is pretty reduced.

I used to have shorter implosions but I also had more people on hand to help when that was my reality. This one has gone on long enough for me to think as a default state it has some advantages. Defaulting to a state of full on retreat from the world having already spent the useless energy on somehow feeling guilty for having failed badly enough to wind up like this is actually working in terms of helping ensure survival oriented tasks get done.

For months a command to hang in there was issued. That’s what people say when they know it’s unrealistic but if they spent too much more energy on how badly you are being failed by the “system” they too would implode or perhaps explode. It was not realistic or reasonable or fair.

It’s a product of a lack of appropriate supports that I could stay in this state for long enough to see the plus side here. For almost two years I have struggled to remember to eat and drink. In my state of minimalistic expectations I have remembered three days in a row.

On Friday I weighed whether I could cope with going to services. Even at my worst I tend to be okay with services so I opted in but from a position of them being a potential bonus rather than something to beat myself up about if I couldn’t go.

There’s all sorts of things I should do this coming week. Anything beyond the work related and basic survival is again going to have to be an opt in. I did horribly badly with the one task I shoulded myself into the past week.

There are health related things that have a high priority for any surplus energy I do have. It’s quite mentally freeing to have had this default approach thrust on me.

I spent so much time worrying about getting to this state. It’s not so bad really. There is fall out for sure because the sequence of events is unclear to most other than myself. I did offer my formal surrender to the health authority but I doubt they recognized it as that.

My life though the past half year has been very analogous to the more futile battles fought in 19th and 20th century history. Historians inflict notion of valour on people who then go off and fight stupidly outnumbered battles to die with honour. I have been to battlefield memorials. That my life feels like one and my own participation in it like a volunteer who blunders onto a field where everyone has died _-

well that is a failure for sure. Not on my own part I think.

This is not the first time in the past few months that notions of hunkering down and blending in with the ground seemed like the only way to live mentally. My brain has been in an unrecognizable state for months. So much energy has gone into trying too hard. I call it brain fry in my own mental short hand.

I love my brain. It has been a truer companion than my body for sure. I feel it should have an apology for the ways I damaged it by trying to darn hard when no amount of effort on my own part was going to do anything other than make my own life worse through that horrible feedback loop where the stress of having to try hard makes me less able and the stress of being less able is a stress that we think should be overcome by effort. So it goes and goes and goes.

Having surrendered or more realistically since no one has acknowledged my surrender more like having thought, if my life was a war that I have already lost is freeing. I have shed all the tears I have in me for this failure. Ever minute I rest now is super helpful for my brain. It feels far less “fried” than it has in almost two years.

When I was young and physically healthy I once during the annual mock war that included real soldiers disguised myself so convincingly as a mound that a unit walked right over me. That may be the best analogy of my life right now. All that hurt like heck but I was such a success at being a mound I could lie there within sight of my objective and having recovered enough from the whole being a mound thing advance on it.

People get so invested in not giving up when sometimes that’s the healthiest thing to do. There was no setting my life up so it was not going to demand more resources than I have. My ability to think was being drained away. In my own hierarchy of what is being lost I sometimes state how I care about that beyond my ability to walk but people can’t measure how your thinking feels. You always have to say what’s wrong with it and these sort of thing that doesn’t seem to have any proper words so they can only be appreciated when it changes qualitatively I think. You suspect things are not optimal and your poor brain seems to feel all sorts of things that technically you know it can’t but you have no words for your reality.

Instead of a default position of full on combat sapping me constantly, giving up on “hanging” in there in any sense as a useful thing has been very energizing. I have fear because there are a lot of unappetizing bits to my life if I am honest, but that fear is processed. It is lying there like the reality of knowing people’s pathing would take them right over me. The being trampled on was less scary as it happened than in the seconds where you know you will.

In the next few weeks a few medical realities will more fully unveil themselves. Decisions will need to be made. Anticipating those decisions and what is to come will sap me as much as trying to be valourous in the face of more than I could cope with.

I am a very responsible person. I suspect more will get done now than in the past month. Maybe not everything that people think I should do, but enough to keep me alive and as an added bonus my brain will be less alarming to it’s host.

If more was desired of me then people should have taken my words about my capacity to carry on as literally as I meant them. There is no point in clamouring that you cannot carry on and wearing yourself out carrying on. Sometimes you just need to make like a mound and lie there. Keep your objective in mind but proceed only when it is safe to do so.

Fuller participation in life as humans live it while desirable seems beyond me as a default setting right now. If I think about that long I feel a bit sad but I spent my tears on my failure to be a passable human already. I will be a mound and from that mound occasionally operate as a human.

Hopefully one day the health authority catches up to notions of how it should support me. In the meantime they know how to find me. I know what needs to happen. For this minute not questioning that that knowledge is indeed in me, and that however minimalist my life looks right now it feels quite a bit healthier than has been the norm for quite awhile

Enough with Making Distinctions.

In the past weeks blogs everywhere have been exploding with critiques about the group I refer to as Voldemort Speaks. While it’s enjoyable to see more metaphorical allies take the field embedded in a disturbing number is the notion that one of the reasons what is being said about autism is wrong is that it is a spectrum disorder. Which it is but that doesn’t make it an ethical point.In the worst case scenarios some go on to say some people with autism lead productive lives.

I say worst case scenario because the group I don’t name is an offense to humanity. If I never wrote a single thing, or read, and if my diaper had to be changed and so on any portrayal of my life as a catastrophe, an affront, something to stop would be wrong. If I, improbably now wind up with a PhD someone pointing to me as a beacon of hope would actually be quite wrong. It isn’t usually thought of that way but it would be.

It may be an advantage of black and white thinking to see that. Every time someone refutes not only Voldemort Speaks position this way but other like minded groups, they are shoring up some disturbing notion that there is a line a human can draw at which point another human life no longer has value. I never did master the complex social skills that lead to procreation. I have though hunkered down wrapped around lives that most would view as pure misery, Wrapped around quite literally in one case as the level of uncontolled seizures that his body endured could break bones. He was at the limit of anti-convulsants that wouldn’t also kill him so there some person had to lie. He had to be held always for the same reason. He could not see, hear, speak or move in any non seizure related way. I hate to think what Voldemort speaks would say about him but thankfully he didn’t fall in their area of non-expertise.

His family, while capable of the humour that goes along with the notion that their son’s only activity was seizure activity, always treated him with such dignity and respect. They belonged to a culture where as the eldest son he had a status over his siblings and  they were affluent enough to purchase the trappings of a little prince for him. He was treated that way. His father would dress him in silk pyjamas and read to him as if he could hear (many years later when fMri’s came along it would be concluded he did indeed hear something against the expert opinion until that day) I had become as someone young, and strong, with experience with medically challenging children the last hope often of any rest from truly around the clock care. I saw lots of people in situations who if anyone could lay claim to the catastrophe vision of their kids lives those people could. Yet they didn’t. While that boy occupied and extreme so too did his family. The presumed competence well before anyone was urging people to. They did it naturally it seemed. They were worn out and tired and hoped for the sake of their other children to be able to close the door on their son’s room knowing someone quite literally had his back.

I don’t know what private demon’s they had fought to reach that state in the face of everyone telling them otherwise. His father asked me once if I had seen “My Left Foot”. I said I had. He went on to say it could be possible that trapped even more deeply inside his son there could be a genius. His father was a brilliant man. He and his wife could no doubt produce one and nurture one but the neurological reality for his child was even if that had been the case new destruction was being done constantly. The human brain is resilient but actual genius is a territory rather rigidly defined and while I had absolutely no argument with treating every human as if they may be one on principal as being preferable to defaulting in the opposite area the notion he could be and would never have the physical capacity to use even the most futuristic technology to express it was a horrifying one for me. Not clearly for his father so while I found it a scary notion I didn’t question why  he wanted to think that. It worked. It was his son and his view of his son and not mine to question even in the awkward position of someone point blank asking me if I agreed and being truthful to my bone I couldn’t really have an argument about it then beyond the nagging voice that wondered and if that wasn’t possible what then? As the movie was recent back then I suspect they would have been as steadfast but logical people tend to need a reason so my suspicion is they would have found another but I cannot know as I was not them. I would not presume to know what it was like to be them. I could only know what it was to care for their son. It was inspiring but not because he was rising above anything in inspiration terms. He is not much altered now from how I first met him beyond being older and now with hearing aids.

They were the most unquestionably, loving parents I had ever encountered. It no doubt helped them when staring down any expert that they were both well educated. I was troubled by the hint that some of what drove his father may have been the notion his boy could be a genius but it seemed unlikely that was anything other than a new motivation as he had asked if I had seen it not read it and they were clearly practiced in the art of presuming competence. They were the only family to ask I attempt to teach a second language to their child. I was used to having to defend wanting to teach the alphabet which didn’t seem like an option here as his hand could not be dragged though anything without caution.

They explained they had noticed their son was his most relaxed during his bath so during that time if I could work on 20 key words from their native language that was likely the best time. I was dumbfounded really. He had at the time no receptive facility at all let alone an expressive one. Years later with a lot of amplification some sound was getting in. I didn’t even work with him by then as he was too much of a challenge for my arthritic body early on even though I very much wanted to. My longest term client remarked to me having somehow remembered that I had worked with him as that had been at a time, when no one thought she herself was taking much in, that he could hear now. I asked her for details which she couldn’t really provide. She said well he has hearing aids now and sometimes he smiles when you talk to him. They like all the chocking risk students ate together so she knew this and was willing enough to talk to him although until that year it had seemed an exercise in futility. His bath had been the only thing to previously get a smile out of him so this was news indeed.

The catastrophe model of disability would have both the client who provided me with an update and the boy she described essentially as only burdens. That one did learn to talk, read, and write and use the computer in no way says to me that her life has more value than his. That I can talk most of the time if I talk at all does not make me better, that I can express my thoughts does not devalue the lives of those who cannot.

Both these children met ethical criteria for being euthanized at birth. They never called it that though. They always said that they would be kept warm and clean until nature took it’s course. That they would be hungry and thirsty never seemed to bother people. The client who was by far my highest achiever had a father who wanted this for her. As far as I know his position on it never changed. He had declared when her mother said no that should she survive he would never spend a dime on her care. Oddly enough this very position made him quite motivated to make respite care easier to access and funded. He was loving in many ways, devoted, but stubborn on the whole should she ever have lived concept.

I couldn’t grasp this either. Not because at the time his view point was first articulated she seemed necessarily likely to “amount to much”. I suppose to some degree my failure to grasp it may have come from having been another devalued life but not entirely. She was my first respite client and the author of my future years with children quite a bit more severely challenged than she was. She was also my last, despite a desire by the agency that employed me to cough up kids and adults more suited to my physical needs recently.

I never encountered any who were not human. That seems obvious but clearly not or why would anyone seek to lay out criteria by which they could simply be left to die of thirst or the consequences of treatable medical issues? Right now somewhere on the planet people who meet the dubious criteria of being high risk for having a child with autism are being urged to abort sons. They ignore the science that would suggest that very high risk group has as much as a one in two chance of having an autistic daughter. That anyone would think it was anything but an exercise in pseudoscience to tout this as screening for autism when it is nothing other than selecting based on gender will no doubt fall apart in the court of law in a few years when someone files a wrongful life suit. I use risk only because that is how it is described. Not that I agree with the terminology.

Wrongful life. I am told I could get some compensation from the producers of a pharmaceutical my mother took to ensure I was not miscarried. I could get more than most I am even told but to do so I would have to say I fall into a category of people who never should have been created. That the deficits linked to this medicine one of which is fairly central to who I am mean I should not have lived at all.

Since I snuck into the world seeming like a miracle as no one thought I had survived what looked like a full miscarriage made my parents so happy for not very long. I was escorted home gift wrapped in pink. My father had told the neighbours if a pink flag went up to come for a party but if a blue flag did I was a son. My brothers are typical or at least fairly typical. The lack of celebration for a son was not due to any fear about what that might mean but simply they had tried for a daughter. My mother wanted a daughter an unhealthy amount no doubt. She had visions for me like I suppose all mother’s do that I would never meet. She was worse than most about hiding that but did improve with time. A long time. A life time but effort is valuable.

My mother was more prone to believe what people thought about people like me which at the dawning of the 70s was not much better and in no way more accurate than the current catastrophic narrative. Having read I was incapable of loving her I may not have seemed worth much investment. It did to be sure make my own journey with what love means considerably longer.  While evidence of my developmental delay can indeed be found in my pediatric chart so unpalatble was everything that went with having autism that I learned after her death my mother who had never uttered the word had told some people in recent years I had Asperger’s. For her that was progress and no doubt she viewed that as less grim despite every bit of science saying in people like myself there is no identifiable difference within diagnosed populations. Even if there was so what?  They have changed what they call me 5 times now in my life if we count the flirtation with notions of residue.  How would you like to be summed up as that? It seems a word usually used in unflattering ways but to be residually autistic was supposed to be great. That there was no actual thing didn’t seem to bother people or dawn on them. It was a brief experiment. That annoying people like me back skid into the more obvious variety pretty constantly even if they could read and had periods where they seemed almost undetectble from peers must have been annoying.

Back sliding is really the terminology they used as if being normal is some fixed point. As if enjoying yourself in a meaningful way were a return to something less desirable. Yeah so what. I stare at my dolls and stack my coins. If you want to extract a lack of imagination or play skills from that question your own competence. I said this in much more academic terms in a review on the literature on wheel spinning (I would have looked at play more widely but such a staggering amount of time has been spent trying to work out how to teach kids to push a car rather than spin their wheels it would not have been possible to get an A plus if I ignored the vast quantities of research there. )

I would never have taken it up with my mother how there was no better, and that to grow up knowing you had somehow failed by simply being given a label was an actual burden not the hyperbolic variety. A child even one who people doubt their ability not only to recognize emotion but to have them, is not oblivious to the pain they seem to cause their mother. That’s the problem really as much of the pain is purely imaginary. I could in fact love her. I do love her. She has died but despite being labelled in scathing ways by many she was the only mother I can have. I have had other, healthier maternal figures who did model unconditional love for me but she bore me and lived with the pain of a constant anxiety about my well-being. That much of the initial confusion about what I could and couldn’t learn was founded on ever changing notions doesn’t undo the harm those notions taking root causes.

Like any mother she did her best. Like any mother she was subject to notions of what goes with what people think about her kid. It’s definitional for mothers. Not that they go blindly along with it but that they do care. That my brother could handle a full table service before the age of 3 was also something that mattered to her. He had to as his was a more elegant time and place.

Having autism has more often than not been too hard for me. The most successful thing I did this week was a mad dash into a store to buy the three items I could get without risking coming so undone someone thought something needed to be done about me. A real risk as I was not capable of meeting any social convention beyond sticking my debit card in the machine and hammering out my pin before fleeing. I am not so oblivious as to not notice in my peripheral vision that makes people uncomfortable. I no longer care as their social discomfort at having to see me is nothing akin to needing to go there. My doctor had urged when trying to be useful to me that if crossing the street and entering the store was too much I could go to Subway (a sandwich place) and get enough for three meals at a reasonable price and safer. He too is not oblivious to having to dispatch me almost without useful support, week after week. His concern when laying out the whole so you will cross the street, enter the store, get a, b, and c, pay, leave and go home plan was evident and he faltered and offered up the alternative. I said in the kind of comment often taken for humour that for the kind of heroic effort entering anywhere was going to be I was not coming away with three meals worth of food.

This was hard. This is the sort of difficulty though that could be remedied with resources that do not seek to change me beyond making things less stressful and healthier for me. A single hour a day of someone who was actually allowed to help me shop or go shopping for me would be life altering. The only way to get that right now is to enter a program that would entail a change of doctor. He mistakenly thinks I have an abandonment issue rather than a change one. Pretty sure I do know the difference and  I do honestly think he is right to think he is more useful in his usual area of expertise. He just has the misfortune of being the only hired help person to not have changed in the past 20 month so to me changing him out at a time I can’t even be counted on to do something so routine as crossing a street and entering a store seems like asking for new complications.

I’m an adult. Most people with autism are. When I read notions of not being able to house autistic children becoming adults from my slummy place it’s hard to understand where people are coming from. I am not cute. I am downright rude at times if a person opposes me in a fundamental way. I have needed to be. I am not all that sorry as it has been a useful skill.

Like every adult I was a child but unlike every adult sometimes people still do treat me like one. Sometimes it is needed. I was not bothered by my doctor taking more pains with my plan for the immediate future as someone could come along and question his competence if I had managed to die in pursuit of bread and milk and bananas. I was happy to see some sign he recognized this would be hard as sometimes I feel like I say things are hard and he says I know but nothing changes. This at least laid out some of the trickier bits. Acknowledged that the bigger store might be well beyond me. It was since two days later I consider myself to be recovering from that. It had to be done though.

No doubt someone is wondering how the heck can I say all I do here and not be able to do something “easy”. What’s easy is always in flux. Usually hanging out with my dog and computer are the easiest things of all. I actually had a home supporter worker (I get 100 minutes in theory a week)  asked if I had eaten today which in 18 months of having them this time, no one ever had. Her time was up but she asked and asked if she could make me something. Technically without having bathed me anything I couldn’t make for myself she is not allowed to do. Strange and arbitrary but true. I am also in theory supposed to help her but while that was always emotionally exhausting now that it is also physically so I get a pass on that one. Since my beloved dog is a safety hazard, and must remain in another room at all times merely because he is a dog (imagine if a dog could have autism. Oh the never ending supply of untruths they could rain down on his tiny head) and I am not willing to subject him to the torment of having me out of his sight bathing even when it was needed is not going to happen. I fell a scary amount of times a few months ago because my little safety hazard needs to see me but he is my primary support I almost said person…  He is my constant and devoted companion. In a world that looks at me strangely,  views hospitalizing me when I get sick enough from totally avoidable stressors as somehow more the done thing than say providing more and much cheaper support, my dog is the most useful support I have. Don’t tell my doctor but my nagging abandonment issue is based on Shadow’s furry life span issue not any human being coming or going especially those the government pays. I tell him he could have done better for his human. I secretly do doubt that though as I sometimes also joke if not for the spiritual and logistical issues with being reincarnated as my dog that’s what I would be in my next life.

The problem is like for every human I know of 100 percent for sure this is likely the only life I have. It is because of that sacred. My casemanager was a bit flumoxed when trying to bring visions of eternal damnation into play should I think of killing myself when I said oh technically Jews are a bit vague on the afterlife and there was no such thing as eternal damanation for us. She seized on G-d as if thrown a  lifeline despite her professed lack of belief.  I had to explain well yes of course belief in G-d was fundamental but not this weird one you couldn’t fight with about things. That by definition a Jew struggles with G-d so in theory I didn’t need to submit to some other person’s version as G-d as the struggle is the point. Yes we have a few rules. All of which can be broken to save a life. There is no added exemption clause for a life like mine. I am here so my life is sacred period. No buts.

Without my faith and it’s community I may have killed myself or died from contemptible neglect of society to my needs. Sadly they use the fact my faith community so strongly helped me when it was most needed to actually further excuse any assiseance that I am technically allowed in policies that are enshrined in law.

My life, however hard, is not just as a spiritual matter worth saving but as an ethical one. As is every life. On a purely spiritual level life or the worth of a life is simply not ours to decide.  On an ethical one that works for me too actually. Any slide from a position that all of humankind is equal and equally deserving of the things that sustain life if not one that people subscribe to as part of their spiritual journey, is it too much to hope some of them appreciate the danger they put themselves and others in when they depart from that point?

Returning to autism. The fact that some do become taxpayers is not the reason we say to Voldemort Speaks that no  you may not catastrophize our condition and rob us of our humanity. Please no one ever think I am more deserving of not having my humanity ripped from me than someone lying on a mat in a developing country who never says a word. If you wish to oppose this group please do so but don’t grasp at things that by your having reached for them devalues people.

Skating all over the Spectrum.

I have complained before about the treatment of speech as binary and I have complained about the way functioning is defined and explained and why I don’t believe in the labels high and low. The past couple of weeks illustrated a bit better than I actually might want why my feelings run so strong on things that are non-issue for most.

Anyone who knows me or reads my blog closely knows things have been rough for about 20 months now. I fell into a massive tailspin when I had to move from my long term residence and nothing so far has been able to bring me out of it. I think the local health authority screwed up a lot in the process which hasn’t helped at all but there you have it.

If people know a thing or two about autism they usually know about change being hard but so hard gets a bit difficult to take. I have trouble with good change even unfortunately so life can be like walking a tight rope. When I first moved into my completely unsuitable and probably not up to code place my case manager wanted to start looking immediately for something else. I knew the risk of coming completely undone was too high so here I still sit. It’s a hovel but it is a familiar one. (I hope my landlord never finds my blog)

I have numerous fairly serious health issues on top of my autism. Some of them are of course complicated by it. Actually it is likely they all are. I am often reluctant to start doing something because it is hard to stop. This is far from ideal if you have arthritis and may be why we have had 3 surgeries (two replacements and one repair of a replacement) already in 4 years sigh.

When I wound up in sophistical for what was meant to be a short stay really as my doctor knows nothing can be done for me bio-medically so keeping me away from my dog, internet and work seems unethical to him the stay went on and on. It went on and on because apparently his ethics were okay as long as things about me were being fixed even if those things had nothing to do with my reason for being there. There was a lot to fix as my ability to tolerate texture had made me completely unable to eat for long enough that almost everything you can measure in blood was out of normal range as they put it. They tried to treat some of that with oral pills even though I said I don’t absorb iron that way no one listened for almost 3 months so several values kept going the wrong way.

They ran the tests my doctor wanted done as far as my autism goes, which bore out what I always have said. That if functioning were defined differently (and since I am always right it of course should be) I would be considered low functioning, perhaps on a good day at the high end of that scale I don’t even believe in but that is important for getting services.

The tests had me the required three standard deviations below the norm for all sorts of activities of daily life. I have to say despite my saying the thing about how well I actually function if functioning is what we are looking at I was a little taken aback. More than a little. They were saying both what I did know on one level and more importantly what they needed the report to say but I felt worried and confused a bit. I asked my doctor for a copy so I could read it more closely and try to process it but he is not very organized and so I am still waiting.

The reason I don’t like treating functioning as a binary thing you can measure is for many if not all autistics that is not how life is lived. At moments of stress even those with impressive jobs struggle in ways that NTs do not. Some of us… people like myself slide all over the place on pretty every symptom that counts. It is stressful to say the least. It was that sliding actually that put me where I placed on the tests as they worded things very absolutely. Losing the ability to speak sometimes was worth almost as much as not speaking at all it seemed and not being able to call strangers the way they worded it was like not being able to use the phone. I can answer it. I can call a friend or family member. Oh well. My doctor’s goal was services and he must have rubbed his hands with glee when he saw what tests were being asked for, although no services have been obtained yet sigh.

It is a tiring thing to be depressed for a long time, to have multiple surgeries during that time, to have your blood all out of whack because you cannot eat properly and so on. It goes on and on and of course you get to the point where like the spent salmon you just do not feel you can go on. Of course a salmon doesn’t but human life is more complicated.

So what happens when you are metaphorically kicked in the guts by having the services you did have taken when you are at your worst? If you are me you regress pretty badly. You have more days where you simply do not want to have any exposure to people. If you have to venture out you have more incidents where the words will not come and so it goes.

While full on muteness for an extended time is usually rare the slowing of my words to a speed that people don’t stand still for or confuse as a symptom of my stupidity isn’t . It is also the one I am most prepared for. I feel a bit bad about it at times because when it occurs around family and friends it almost seems manipulative. Not a fair way to put it when it is not something you wanted to have happen or could control but everyone pretty much prepares you for everything for a long time afterward and so on.

I consider myself Jewish and well I am Jewish beyond a shadow of a doubt now so I guess that is good but for a long time I lacked the courage to even try to be a Jew among Jews. My sister-in-law is Anglican and that was a familiar stetting so I did that and tried to make peace with the trinity every week when that was the peace of advice a scholar in residence gave me when I asked him about it. Despite his lofty rank in the church he had his own doubts but felt it was okay if he could get them in order for the declaration of faith and then he had another week before he had to worry.

His solution worked for me for a long time. At Christmas I was almost always at my brother’s house and going to the midnight service had become a tradition. Tradition is a bit problematic with me because pretty well anything I have done twice I expect to carry on. So there was the year my sister-in-law’s mother of blessed memory was feeling a little tired, and everyone else was enjoying the conversation and wine. Somehow the unthinkable happened and people agreed to not go to the service. I completely and totally shut down. I have no idea of the span of time. For awhile the whole gathering spun to that rare place where I could no longer comprehend their words then I could hear them but not answer.

I got to the point where I was aware that pretty well everyone in the room was very uncomfortable Tears had streamed down my cheeks for a long time and I am not much of a one for crying. People tried to talk to me at first and then gave up. I could see them looking for guidance but eventually things resumed with me sitting there mute and miserable, acutely aware I had to some degree spoiled what had made them want to stay in the first place. They had been cozy and happy together and I and my need for routine and subsequent quiet melt down had ruined it,

There is nothing to do about it When I could talk we did not talk about that. Was clear enough that people were relieved when I could but I suspect most thought bringing it up might bring it on again I do not know not being them.

My sister-in-law had always been as good as her organization level allowed her to be at trying to give me a sense of what would happen during my visit and on any given day. For several years after this incident she was almost comically obsessive about it. She sent pictures of a new car they had bought well in advance and so forth. Really it was helpful and I am not complaining but hand in hand with the feeling that I was getting much more information about what was going on and what to expect far in advance I felt guilty because of why.

I have been told guilt is a useless emotion but that hardly stops it. Feeling guilty about something you cannot control and didn’t ask for is no doubt even worse but I was younger then and still a bit hoping to be more like everyone else there. I had not given up the thought entirely I could catch up. So the useful things that came were also reminders that I was not like others. Everyone was loving and kind but that I needed this stuff was something I so wished I didn’t. I alternated between feeling well this is living the dream as far as no surprises goes and feeling horrible for how much thought people were putting into things that I so wished could just go naturally.

I don’t know that anyone in the room had even seen me in that state before. What I was was known but since I usually can talk and function was expected, especially at the events that happen over and over again. You might peak in and not guess at the best of times and holidays often are so while I think my sister-in-law had talked to me rough to know it could happen in theory , it is not theory when you make a decision that leads to someone being in that state I guess.

Lately every day has had the potential to have me like that. Most have but since I am avoiding humans it has hardly any consequence. When I had some to see for medical reasons I did become both mute and so totally unable to come anywhere close to looking at people that it was a worry for me. I like to look at their id which at the hospital is usually worn around their neck. I couldn’t get that high. The books that say fake eye contact never do describe what to do when getting much above the midpoint of the stomach is beyond you. Of course since I hate those books it is not like I will be looking to them for a solution.

More things went wrong after I had my surgery. Something that would have been catastrophic actually had it not been labeled an administrative error the next day. The damage though from the 24 hours in between is still with me. My case manager can’t work out why even though I tried to explain it. I suppose on a level if they thought more in terms of my autism and less about my depression it would make sense that functioning lost through a traumatic event isn’t regained instantly just finding out it was a mistake but they don’t seem to think like that.

Despite being done with humans I went out among them today because I have friend who claims to be stupid but is an evil genius when it comes to thwarting my plans to isolate myself or worse. She has a son who I suspect is on the spectrum. Both her boys love me it would seem.

She claims total innocence in the fact that the one likely to be the spectrum showed me his gratitude drawing on his wall. She sometimes asks me to talk to him about stuff she does;t understand and she feels I am more qualified to deal with but the topic currently looming is going to require some warming up and coming up naturally so I was making conversation in his room wondering if it would and he pointed to it.

I was up there just under Mommy and slightly over Chocolate cake. Daddy and G-d and a few other things made appearances but I felt yet another tentacle sink in. I love this child and I do not use love lightly. Problem is I am not that fond of the planet he lives on and it’s a balancing act where his mother consciously points out she needs me for him and incidents like this which still leave me blown away. What do you do when a child is grateful for you and a small handful of expected things? (although his mother was surprised he put G-d I said she shouldn’t be given he pays complete attention at services and if the rabbi is there is so rapt and still you would not guess his age)

His mother more sneakily had placed a picture of the boys in my backpack which she hoped to get into my house and set up as I made my painstaking way from the car. However since once of the things we do with the boys is play with my tablet multiple trips to my backpack were made so I found it and had to check if a child had put it there or if it was meant to be there.

To be completely honest my weeks had gone so bad and I was tired enough my ability to hang on much longer was in doubt and now I was in a horrible quandary which I managed to make worse as I was helping with the boy’s bedtime..

My evil friend had been telling me they had hardly any percussion in their huge concert band and it was a problem but her band meets the day before the one I have played in for more than 24 years does (I did do a brief stint in her band years ago) It is hard for me to be among those dreaded humans multiple days in a row as who knows what will happen? I had refused and refused and then earlier I had seen that the concert was Jewish music and I thought well if I can make that better by being there (I had my doubts) I probably should. I wasn’t willing to commit past the rehearsals and that gig and so I expected the conductor to say no but as I was trying to settle one child in the answer came back to if he wanted me on those terms as simply YES!!! so there I was stuck on the planet for sure for 20 more days and no doubt no matter how many cruel and stupid things happen to me in the mean time in those 20 times that a little boy is grateful for me will sink deeper and deeper into me.

It’s far from the first time I have helped people with their kids. I was a respite caregiver for 24 years and although I never looked after someone on the spectrum professionally in that time I met and mentored a few who’s parents I came to know.

One thing that is unique about my evil, genius, friend is that she just sees it as totally logical that she seek help from me. I had previously sometimes found it delicate trying to explain what I thought was going on or was even 99 percent sure was as no matter how out of their depth a parent feels and how much they express the desire for some perspective on one level they can’t let go of the fact they must logically know more about everything about their kid.

My friend does not have an iota of that hang-up. I go over she will say this will go faster if you do it matter-of-factlyyand so on. She says it was immediately apparent from when her eldest first met me and that he subsequently asked for me that he related to something about me and I suppose when I could explain a few things or get him to get things done that would have taken “forever” otherwise my utility was clear.

So tonight I had to go into a room with 65 strangers having sworn not to see humans for a few more days still (except accidentally). I had to shake hands a few times something I am thankfully good at. Say my name a dozen (less good as it is a name they won’t have heard) and then play music I had never seen. Once I survived all that in a week where several times I couldn’t speak at all I must have come to rest for a bit somewhere else but who knows what tomorrow brings? How curative is a little boy’s innocent gratitude for a person who he actually could tell was like him and he tried to articulate it at service once.

I am an ethical person and multiple times this year I wondered if it would be best to just not see them. That if the worse were to come to pass they would be more spared somehow but it is likely too late for that at least for boy one.

While the love of a child is clearly curative it doesn’t fix any practical problem we have with our health authority’s stupid and downright negligent ways or any health problem really. I know having had times lately where I tried to hide in places I would not have attempted it as being discrete with my autism in public was always something I worked on (not always successfully but…) After a blood draw I walked right up to a wall and smashed me head into it to feel better (my doctor has been considering putting me on those blockers that in theory prevent this from making you feel better but my arthritis makes it impractical)

I am of course grateful for my friend and her children as well, chocolate cake and G-d would make my list, and work I can I do without any contact in person with people at all, and of course the best dog on the planet. I suppose that is enough for right now. The sliding around will carry on. Right now I feel afraid of going to the band I have played in for 24 years a full 14 hours in advance so there is little to be done but deal with that.

Shattered Hopes

I am glad I made a point of talking about the elements of my life that are surprising sources of support or more supportive than one might expect them to be as today was a day of smashing any hope I had managed to build. This is something that seems to happen every half year of so the way support works here. I should have known to expect it.

I spent part of the summer presumably qualifying for supports for my autism. A novelty in my adult life. A program had been created and I tested in the range that should have gained me entry although I wondered as I had heard many stories of people applying but none of people actually getting it. This program might be one of the all too common variety where it’s head thinks the mission is to guard the pile of money the government hands them rather than to actually help someone. I don’t know.

For me the prospect of help that took my autism into account was exciting. I could imagine so many of the things that had been a source of frustration with help based on other things not being an issue. If someone wasn’t coming around because my mood was low they wouldn’t tell me to solve some problem by simply trying harder. Presumably if I had a problem with a texture support based on my autism would not have a worker telling me what a fuss I was making over nothing. I dreamed of people clearly communicating and making sure I actually understood what they meant not what they said (as the two do not match as much as one might hope) Oh the dreams I had. I don’t know why I was foolish enough to even dream them. I had to fight very hard for the right to finish university versus being put on a shelf in a group home and then having finished there was no one to supply just a little support. So we wound up on a different shelf where we watched time go by and people have lives and where everything that other adults had and enjoyed seemed just out of reach. On this shelf we could be exploited but what we could not be was become a full member of society. We could sit and watch those who’s diapers we had changed surpass us in some areas of development as they grew to their mid teens because we had had no help and support around some sensitive areas.

I am 45. I didn’t have silly notions like I would learn to date, and marry and have a family. I thought I would have some help with organization. Some encouragement regarding getting more education and some help finding suitable housing. Small dreams in a way compared to actually having the full kind of life I see all around me. Still that’s what this program claimed to do and they all seemed reasonable with support. I am more than intelligent enough to have my Ph.d I just need a little push, some help jumping the hoops and so it goes.

Today I learned my doctor has doubts these people will ever get back to him in time to set anything up before my current support runs out. Because unsupported would be catastrophic right now he’s in a bit of a panic. I feel like I live outside of time and space in a way right now. I am not in a panic. I am sad that it seems to be going this way but we’ve ridden this merry-go round of the idiotic ways systems work enough times in the past 18 months to be well beyond panic.

All the same when my doctor said he would step aside as my doctor as he was a barrier to my getting support from another program. I said no. He asked what if it were not my choice and what was left of my world felt like it was crashing in around me. The pressure built in my head. The words caught in my throat. I managed a few more exchanges and I knew I was done. I had wisely prepared my backpack when things started to collapse. I protested a few times that “this is a developed country” not managing to get off that stuck track. Not managing to articulate anything really. Certain my world would come to a complete halt if all this happened.

I don’t know what he will decide. I have no intention of being supported yet again by a program that is focussed on my depression not my autism. I have been depression free for periods of up to 12 years whereas I am never autism free so where is the sense of this? I also know inevitably any program that can’t take my autism properly into account will just get fed up with me. They will reach weird conclusions like the one that led to my current services starting at a very low rate. Service providers don’t tend to ask about what they don’t know about. They will just try to fit me into the mold of their other clients and the way I don’t fit the thing that supposedly causes my depression to be untreatable could be ignored. It might be belittled it might be treated as a curiosity. All sorts of outcomes could happen but what won’t happen is I won’t get support that fits my needs. It is up to my needs to fit what is on offer it seems. How dare I defy the biomedical model by not getting well in the usual amount of time? Why on earth do I have multiple conditions? This makes me too much work. Eventually questions of mandate could get me dumped anyway.

I will never know because I have no intention of seeing an unknown doctor and unknown people. I really though that if my doctor took the consistent failure of the system to support me properly through the proper channels the system might bend they would see that it was probably preferable to spend 400 dollars a month on support versus 35,000 on institutionalization. What sort of crazy society do I live in where that is even on the table? I’ve been sentenced without having actually committed a crime although my doctor did admit the support I would get were I to commit one would be vastly superior to anything on offer now.

In the autism community support is the hot topic always. The lack of it contributes to tragedies.  I am very intelligent yet I always need some degree of help to function effectively. In times gone by oddly enough society would have accepted that better than it does now. In non-developed countries outcomes are better so my protest that Canada is a developed country while I meant it to mean they could act more sensibly towards me actually makes no real rational sense.

I have worked hard the past month to rebuild some of my life. The things I can rebuild on my own I have but without some external help it is too tiring. There is so much going on with me beyond the autism but the autism dictates a lot of how I react to those things. We had a care plan in place for my knee operation on what to do if I wound up too stressed too speak. It wasn’t as good as it should have been because although I had mentioned the slowing of speech and the difficulty with it as a more likely outcome most people didn’t recognize it. Nurses sometimes flew out the door before I could get fairly important words out but that is the life I have lived for what has to be considered at least half a lifetime at this point. Some older nurses especially seemed to come on shift wanting to convince me I was just fine as far as the autism went. A lot of nonesene and labels don’t you know?

All of that is behind me. What is in front I don’t know beyond the next few hours. I feel too ripped apart by the news today to trust any health type person. I feel smashed and gutted and simply fed up with all of it. I did everything I was asked and in the end nothing changed for the better at all. The only thing to change is I was almost half a year older.

Was I naive in the first place to think support was obtainable? I am not sure. A lot of my experiences lately make yes the right answer to that question but when I was a young adult I had a period of my life where I actually had too much support so it makes sense especially given the very nice brochure they gave me when I did the tests that I would think okay this could happen doesn’t it?

What actually happened is I hobbled, blinded by tears as fast as I could away from the source of the news. I am a klutz so the walking into several glass doors was a given. I will never understand why they even put those in places where people might cry but they do. I shouldn’t have walked as far or as fast as I did so my knee was not exactly doing well. Five weeks post op seems like a lot but not for a knee operation when you have bad arthritis.

I got home and in this bizarre interlude when I was barely able to keep from crying someone from my congregation came by with meals and groceries. If she suspected how close I was to total collapse she did not say.

I walked the dog and foraged for blackberries.  Sometimes foraging makes me feel better since it says I can take care of myself (although I doubt you could live  on blackberries alone it can be empowering) Tonight it didn’t help. Tonight nothing will. I will do some work and spend hours trying to sleep probably. Tomorrow will be interesting as having concluded the health authority will never actually produce meaningful help my avoidance of the useless and very time limited stuff currently in place will probably aggravate someone. They won’t see it the way it is. That right now the “system” feels like such a source of wounding that anyone sensible would stay away. That in my own way when I don’t answer my phone when they call or am not here if they show up I am protecting myself from further destruction.  Further destruction being hard to imagine actually but that is how it will feel.

As for my doctor I don’t know. He is spread too thin and while he was the best doctor I ever had he’s also become the main deliverer of news I can’t bear. News that seems to seal my fate in ways I don’t want it sealed. I suspect then although I said I would not be okay with him not being my doctor he won’t have much luck being it either,

My case manager asked me earlier in all this as she could see it coming if rigidity was part of autism. It’s rigid on my part that knowing services exist that would help me, and knowing how poorly I function without them, and knowing I qualified for those services that I should get them at some point in a reasonable time frame. She may be right and certainly if I could have been flexible enough to adopt the more hopeless viewpoint all along that I was very likely going to wind up with 100 minutes of cleaning as my only formal support maybe I would feel less smashed to pieces now. Silly me to think when everyone acknowledged that wasn’t enough support that they wouldn’t repeat something that totally failed me again. But they will.

That’s what being an adult with autism can mean some days. With no one to fight your battles for you off you march stupidly trusting that things will be as you think they should. Later you emerge metaphorically bloodied and so distant from the world around you that you are not entirely sure you would notice if a bus hit you. You emerge with no one to send in to battle again for you and want only to get away. You’ve been totally crushed and what it would take to undo that is the very support they have made it clear you will probably never get.

And now to work I suppose. It won’t change anything about my situation but my colleague has expectations of how much work he will se when he wakes up. Unlike the system I meet my obligations.