Category Archives: Depression

Seclusion and Restraint

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I went through something so horrible last Monday I cannot write about it in any comprehensible manner without winding up in tears and shaking.

I cannot not write about it either because it is a common issue for the community. One which I somehow thought would never again be even on the table for me. I was wrong.

After having a number of weeks which were even more difficult than before I went for help. Getting help at all has been a difficult chore as my status as too atypical for most approaches has meant more time has likely been spent with people writing reasons why I am failed over and over by systems meant to support.

I had been hanging on my a thread so slim, I will not sugar coat it. I feared I would kill myself and with no way of getting help had to take measures to prevent that. As I did at the start of all of this I had to make swimming out to sea impossible and I did.

I do not believe it should ever be so hard for anyone, of any kind to find themselves in that position. To find myself there again having tried so hard to get well was beyond upsetting.

I had been in contact off and on with the crisis team here. I had left countless messages at the clinic I am seen by to update them on how I am doing since not being able to phone during hours where someone might answer the phone is a problem.

I had my friend phone, when she came by the house last Monday. It had been my experience that messages tend to get passed on to my doctor, pretty well, only if people phone about me which makes it even worse.

Still I so badly wanted to survive that I suggested that.

I have to use the past tense there because what followed destroyed that tenacious part of me that has fought and fought through service inadequacies and outright abuse by service providers.

I had no real faith in the system left but I had retained a notion that my life is sacred. I had seen  that rebutted my entire life. As has  my basic humanity and my sharing “fundamental” human characteristics. I wish that was not part of the autistic experience but it has been for me and we can certainly see in the news that there is not much evidence that has changed as the murders of those who are autistic mount and the spin is nearly always such that it is us who are difficult. So difficult that too many times I have wanted to throw up when murder after murder is justified.

I am technically alive but right at this moment that feels like a technicality as I was brutalized in such a manner when already barely hanging on that I feel quite done with this horrible planet and those who prey on the disabled and ill for kicks and because they can.

So I apologize for inflicting what may be horrific haiku on you but only by sticking to any sort of strict structure could the words come out at all with me semi-intact.

That complaints are being filed and words written that they claim will protect me against this ever happening again is no comfort as signs that the words that have been written in the past are read are few and far between.

I was placed in seclusion in a ward that was already locked with the reason being given that the doctor was afraid I would leave. I had a serious injury which was the reason I needed to stay but I was not given the option of having that tended to in any other manner.  My own doctor was consulted and while having sent me for treatment with the understanding I was willing to have it there is no doubt he would have insisted if I was not willing that I was willing would be something he covered. So they called someone else to get the result they wanted.  It’s actually in my chart how unnecessary involuntary treatment is for me. Placed there the last time someone opted for that and caused great stress which I can never afford.

So much has been documented about every aspect of me in the last few years as my doctor tries to prevent one horrid thing after another from happening.

This was so completely unexpected though. In my worst nightmares I feared that part of emergency because the sheer over-capacity numbers and chaos have made it hard in previous times. It was for that reason no decision had been made earlier as I froze at the thought and shook and was stuck between the horror of not being helped and that and as sudden never works for me we went home to the void of no support and mounting anxiety over our inability to eat and so many frustrations happening at every turn.

As I cannot describe the situation where I felt that tenacious little finger grip on the planet slip. The anguish of knowing I would never be human enough to be safe on this planet.  I am in tears just setting it up so I bring you the semi-untraditional haiku version which mourns not just me and my realization but those who have paid the highest price for being too different for a planet that seems to crave cookie cutter people.

Earth is a planet

Filled with people  who crush hope

Shred lives with laughter

 

There is no remorse

Reconciliation impossible

Lives deemed less worthy

 

Life as a human

Has never worked for us

Always alien

 

That we are not monsters

Children and dogs attest to

Yet our lives stomped out

 

 

That is all I can say now.  I relive the horror, the pleading that given my replaced knees and severe arthritis it was all so dangerous. I will pay the price physically for this for a very long time. Emotionally I may not be able to recover.

To those who debate the damage seclusion and restraint does more academically and justify it I would say try it. Try it in a true way. Go into a system where you seem too different to treat humanely versus just entering a room where you know you are having an experience that will end.

That is after all the real problem. While I felt that tenacious anchor I had on the planet die in quite a noticeable way the primal fear that nothing would ever be safer again is perhaps not something that can be simulated.

They had no reason to do it. They rotated someone else in there once they had me trussed up like a sheep in restraints on a stretcher for asking for toothpaste too often.  I lay there and they joked about me. A nurse asked about my hitting my head while I was in there and replied to my honest answer that I was feeding her a story. Why ask?

“You look uncomfortable” (laughter from the security clowns in the background) and so it went.

The chilling part beyond feeling they had killed me which is an ongoing issue (I know I am alive but something fundamental to wanting to be did finally permanently depart.  I have my doubts it will be back) was when deciding who to put into the room next (which is not how it is meant to function) they ruled out someone who had a long history of violence and was not settling either.  While I admit the patient they put in there next was uncooperative this is the reality of people in residential settings. Minor things have major and damaging consequences.

Nothing about me justifies it.  No one is even trying to at this point but that does not mean any major accountability for what may kill me will occur. Or the additional physical trauma.  Heels have been dragged on having that properly assessed even. Although they added more pain meds today seeing that the increased pain does remind me of the incident and thus I am re-traumatized over and over again.

The person who had come with me and knows me and is a police officer who tried to reason with them every step of the way.  He had stayed because he felt the treatment outcome a previous time where he had re-directed a doctor to the part of my chart about communication had been much better than without him.  He had to justify staying as he is much in demand for situations where people might fight help. So my being willing made it a hard case to make but he could point to a January situation where his presence and indeed going to hospital were unnecessary but without him there I would have wound up in that same ward for less reason.

His having been nice about it made it tolerable as otherwise one could seethe the whole 9 hour wait about the stress of having been dragged from your home and lied to by the person who made the decision. The kind of person who can justify lying as protocol as if all people are the same which was the attitude that pretty much doomed support by that group from the beginning.

He did his best. I do not fault him. I had joked earlier when I could hear him making his case and it was not yet clear he was not winning hearts and minds that he was my “knight in bald armor”.

He tried even as step after step of the nightmare enfolded to minimize it but I am glad he left before he could see the full brutality of it all. He is on a commission to make changes. Changes which right now seem like they will come to late for me.

I felt I should post about it though.  There is nothing pretty or useful about it other than my being able to somewhat articulate a horror that has killed and does permanent emotional damage to people too often. I wish I knew if  my being alive is a technicality or not right now but such is the harm done that finally I feel no urgency about resolving my eating issues, or my other medical ones that go untended in the community.   I finally hit the point where saying I don’t care became true. I do care that barbaric methods used in health care environments stop.

Torture is never justified. No one is pretending this was.  They will all keep their jobs though and who knows how many people have had the same happen since. What I know is several doctors will have to treat the physical consequences now and I cannot believe I will ever care if I walk the earth or not.

That may pass but it seems so unlikely as to walk this planet as autistic is to invite brutality in the extreme. From the banal comments that make  you seem less than human to the total brutal treatment by multiple people with both power and control I am not sure why anyone does.

It had become habit to fight for help and health.   I would not be killed as easily as too many people I knew and loved or simply new as people of the tribe of the atypical brain.

Being murdered is of course more permanent.  The anguish when something in you dies is a pain I hope most people are spared.

 

The Myth of Recovery,

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I read a article that on the surface seemed to some in the autism community at least more positive which is a bit of a sad commentary on what we have become used to. The article is here: http://seattlemag.com/article/autism-identity-or-disability?page=0%2C1 . It contains perhaps the most damaging notion for both adults and children on the autistic spectrum. That recovery is possible. They often put it another way that we can be recovered like some junked guitar found in the dump I guess. I don’t know.

I understand people need hope. Even if your child falls on the end of the spectrum where people mainly just think they are extremely strange I know a parent struggles. Nature conditions parents I think to have dreams for their children and then a doctor comes along and puts a label or two or three on the carrier of those dreams and well I can only imagine it must be very hard.

A good parent learns I suppose to be open to dreaming a new dream. Altering it often. Ideally realizing as pretty well every parent no matter what kind of child you get that this child is not on the planet to do the things you didn’t get to, go that one step further than anyone n the family has before or demonstrate they too have a cherished family gift for whatever.

I will never know what it is to be a parent, let alone a parent with a child with an Autistic Spectrum Disorder. I do meet a lot both online and in person. The internet being a bit of a mixed blessing for a hermit.

Recovery is perhaps the most damaging to people who occupy they part of the spectrum I do. We have technically competencies in language and a normal or insanely high IQ. I have a degree which was often on the wish list of parents who would come into a an autism chat many years ago.

By the things focused in in that article I have recovered and this was indeed the notion of my youth (which is holding up services a bit as no one with an adequate grasp of the DSM seems to be employed by the agency making the decision) You finished speech therapy and someone, somewhere declared your autism residual and your parents had already been cautioned that mentioning the word would cause backsliding so you spent time with this weird notion the word somehow applied to you but if you brought it up or heck even dared to read a book about it your parents would yell that you were not autistic. This always seemed odd to me as the only people I knew like me were in those books and I read the first one when I was 5. Protected then from being yelled at by the fear it would send me under a table or down to my crazy kart fro 2000 of so laps of the basement.

The hard truth of the matter is a child like I was may experience brief windows in time when what is expected of them seems bang on with what they can cope with. We may almost have passed for normal during the grades of 4 to 6 if I had not spent one of those years talking like a robot the entire time (which thankfully did not bring on the speech therapists again). Spending every academic subject in the library wasn’t helping but on the whole those years will count as the most normal seeming of my life I fear.

We had, , once the notion that I was probably mentally retarded had been shed, acquired a new and better identity. One that gave some leverage for me to be a little bit odd I suppose in the eyes of adults without questioning outright what was wrong with me. I settled into the life of the super gifted and talented as they would describe it when trying to have me moved to private school.

I can sees how much better this seemed. How in a family with a good history of denial it would be better to totally attach themselves to this. I was too gifted for the gifted education available was the claim so multiple attempts were made to have me shipped away and private citizens even made the occasional offer.

For my parents the period where my school district became very insistent about it was a hard one. They had moved me from a city I was comfortable with. Friends I had picked up during the glory years when I was away from class too much to seem too weird and who were thus inclined to be kind to me even though I wasn’t keeping up as we entered puberty. The last kindness I would have from a peer group was when one of my inner circle pulled me aside and insisted if I were to wear a yellow shirt to school the time had come to wear a bra.

After we moved if I try to think of it from my parents point of view they were very conflicted. They could see I was not able to make friends. That I withdrew to my room and seldom spoke about anything. My grades were excellent though and the school’s main concern was not that I fit in socially but they were ill equipped to educate me not because of my autism but because I had actually finished with the content by the third grade.

Many hushed discussions were had and many impractical solutions come up with as my parents still saw me as something that could be recovered. Heck they had been told I pretty well had. If it were not for those few clingy bits of autism they could glorify in having a child to intelligent to be educated anywhere within 600 kilometers of where they were.

I don’t know why my father always turned both people and school districts down. He was in the odd position of not having to fight that the laws about an appropriate eduction apply but rather people would come to him and he would say no. Did he suspect another change would undo me and in the absence of any family member to wonder how I was functioning I would slide all the way back into whatever it was they feared?

I was bullied brutally for many years but the yearbook evidence would suggest I had peers. Peers who were highly inclined to join in on the pack violence so it was a strange time for me. I placed myself in structured activities which sometimes worked and sometimes didn’t. A sports team can be a very brutal place even if you are good at the sport.

Army cadets was my salvation in a way I think. A youth program that told you what to wear, what to say and what to do. It has more of an academic component than it looks like from the outside so I did well in it. Progressed rapidly up the ranks which gave me greater control and information fast so I was not caught surprised by some thing I was expected to do. Within the context of cadets while undoubtedly still and outlier I had actual peers.

As you age and gain rank you take increasing responsibility for the operation of things so I actually achieved a great many things on the planning and organization still while still young which strike me as odd now having bottomed out of the tests that measure those things.

If one had viewed me when out with my Cadet Corps. You would have though I was an impressive teenager on he cusp of adulthood. If you stepped closer you may have had cause how I tactfully maintained a newly minted officers sense of control and dignity but spared my platoon a night march through a swamp. It is I am afraid a rather specific toolkit as far as diplomacy goes.

Not that I was always on the ball with that. When getting an award from our Colonel one day, he remarked I was female. I replied, “I am aware of that Sir.” I actually was not being sarcastic sadly but it could have been taken as such. What else was I suppose to say as that one had not come up.?

A few years later when I had an honour that would later be explained to me as being largely due to my height at a big event with Prince Philip well… History repeats itself. There were half a dozen people of my rank sent to get crowd control “volunteers” from the rest. At some point someone came out and said I would be in charge. I could see my training officer come towards me at that point but someone said something.

There were shouts of protest from those who felt they had seniority despite our rank but I had no clue either. Someone slipped up to me and said he knew but he wasn’t allowed to tell me. This indeed proved to be the case. I would learn after the fact that someone taller than a royal has to stand in this central spot. I would learn it after Prince Phillip came up to shake my hand and make small talk which protocol dictates is appropriate. No one had told me about this part in the program and as he approached I got nervous. The cadets in the UK were not accepting females then and who knows he may never have run into a female in this point position but he uttered the same words as our Colonel had years before. I could see a look of alarm cross the Colonel’s face but wasn’t sure why until my typical response had slipped out. The Prince did not seem to notice but several higher officers were either in the middle of trying not to sputter or trying not to laugh. He said a few more things and was gone thankfully. My training officer came over and explained what he had wanted to say beforehand. That this would happen because since any bullet fired from the crowd would have to go through me.

I was not impressed. I would have done the position having been told to with that knowledge and in Canada the odds of a bullet flying through the crowd are pretty narrow. The worst thing we had to deal with were the kindergarten teachers who resented that the kids could not simply sit in front of us but those were the orders we had.

There must be official pictures from that day somewhere although the Prince and Queen kept a pretty tough schedule back then. I would have looked like a teenager to take great pride in if you could not I suppose hear my replies. I can’t remember the rest of the conversation at all because I was a bit distracted by people turning various shades of red and purple.

Autism being a shameful word to utter my mother would not have said this was due to any intervention on her part of declare me recovered despite the stamp of residual in my chart. By then even a mother who deeply wanted a daughter like other daughters knew she didn’t have one and she was not one to focus on what I was good at as it was my social deficits that she was obsessed with.

In the post I made after her death I make it clear I love my mother. Those were words I could not have said with certainty up to a point. Certainly not then when shes may have longed to hear them in a way that wasn’t a synonym for hanging up the phone.

I spent my early years not looking like I would amount to much. I spent the later years having sometimes a conflict from appearance and reality but sometimes being in situations I was competent enough at to almost seem normal. I took comfort in the notion that I had read about a poet with a bad stint in the army during the worst of times as people did sometimes attach a just before my last name as if I was incapable of comprehending some of the things that went on that should not have .

Forever after I have lived not knowing how and how severely my autism would impact me. When you find some incorrect data in a coded study and get paid 300 dollars for something that took you less than a second that seemed nice but being dragged around the psychology department as “that student” not so much.

Depression would further complicate my life and like my arthritis it does not play well with my autism. They claim it make my depression untreatable so 4 times now they have concluded electricity might work better. This go around with doses of horse tranquilizer to boot.

I cannot as I type this cope with the sound and intensity of the world out there without help. It is too much for me. I have lived for 20 months in a state of disarray due to the simple act of having to move. Anyone temped to label me recovered when I was hitting milestones like a university degree may wonder what the heck happened but in truth back then university was my functional place. I knew how to be be a student well. Not the bits that included partying or even knowing where the party was but understanding what the professor wanted and getting those A’s that I could do.

Now my work is similar. If viewed just by my capacity to do my very flexible computer based work one would probably rate me fairly high. I don’t now why the ability to do that remains when everything else is gone but it seems to. I set rules as safeguards though about not working past certain hours and I made myself come off painkillers before I resumed as it is complex work sometimes.

My boss does know about my autism as does anyone I work closely with even though to date we have never met in person. It doesn’t matter for the work I do for him. It matters a bit more when I have to run a team as I can forget the nice words. I put them on a too do list actually to remember to find something people are doing well and make sure they know you noticed as my team are volunteers that is kind of important but I can’t be dishonest so I will never be the type to gush.

Still it seems a bit strange that a person who had no hope of getting her coat and phone back as it involved going out in day light (brighter and more crowded) makes the decisions I do.

The internet is a great gift to people on the spectrum. I think more so than any other group. Parents can chat with each other, autistic people can chat with each other. My facebook friend list is filling up with autistic people I have never met but they think enough like me to be less annoying than the contingent of people you have on there because you can’t say no

It can however be used to spread terrible things as a truth. As positive as the article seemed in many ways the truth is if you have autism you have it for your life. Some people seem lucky to me in that the things thy have learned seemed ta bit more static as in they can talk and that ability doesn’t tend to flee but I have to suspect they have their own challenges.

I cannot change my autism. Sometimes I hate it to be honest. That doesn’t mean I want it cured as it has formed me, any hypothetical cure would not change the structure of a brain well into adulthood. What gets removed in the process may be debated as well.

I am normally in a state of acceptance about it. I am honest about it to the people it will impact so it doesn’t have as much potential to blow up with everyone wondering why but the way I have been the past 20 months I described to my psychiatrist as much like living without skin. He is a very ethical man and he was concerned he was hurting more than helping and I had to say right now it all hurts. I can’t manage any of that and this is a record time of being in this state.

In some ways as no one is my parent my situation is not so different from a parent wondering will their child ever do this for the first time or again. I am my own parent in a sense. Only I can take hold of myself and try to convince myself the day will come again when you can go outside in the day without help, the day might come when you can go back to school. We are dreaming small dreams right now so settling for being able to walk the dog in the day seems sensible.

In an hour my ride will come to take me to my swing band. I am competent at swing. It took a long time but yep I can play swing in my sleep. It caused what I am told a never seen thumbs up to a percussionist at another band I agreed to help last night when I was feeling quite terrified overall. (They have a huge and important concert on Saturday) Yeah functioning as I am the wisdom of agreeing to be a ringer for a concert of this magnitude of importance seems a bit stupid in retrospect but oh well. It did give me a rare chance to have someone by positive about a skill I laboured at. I value my ability at drums over that on the computer or the languages too numerous to count now that I can read. I value it because it was hard and that could be something to tuck in the backs of people’s minds as they struggle to stay patient with the progress of the child. As they struggle to avoid the trap that thinking of them as cured will be and so it goes.

It’s not a journey any of us whether Spectrum or parent asked to be on but it is all we have. Like all lives it will I suppose be good and bad and comparing myself to others of my age brings no happiness. I am deeply spiritual and although it is a concept that upsets some, I choose to believe I am as G-d intended and oh I do get so mad at G-d at times. (Jews are allowed by definition more latitude in giving G-d heck in case anyone worries for my soul)

When all else has been gone my faith has remained. One might think as some upset people have mailed me that it is a cruel G-d who would make people that would have lives much harder than others and struggle so much and so often just to viewed as competent and at times even human. I do not think that. I do not make guesses as to why and I have yet to get an answer. Sometimes I hope the fact that I can express this is part of the why.

I make a suggestion to some previously unknown blogger and a problem is solved, I visit for a day with a boy with AS and he works out that autism is not terminal, I take a new child under my wing so someone is there to say what his parents cannot. I am like you. I know it is hard. You can still be what matters to you on this day so rest a bit and then come when you can. We will wait. You are important.

I almost cried when uttering the last words to the child of a friend the other day. I thought what a difference it would have made if anyone had been there to say things and to simply be leant upon during what seemed like a catastrophic time to him. The odds that someone would see it was not a big deal over nothing seemed slim and added to the shame. Shame nipped in the bud I hope at least that time before it bears fruit.

 

Skating all over the Spectrum.

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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

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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.

The Supports We Don’t Expect

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416111_3028021694076_399525806_oI live an odd life. Odder now in many ways than decades ago. When I was younger and having problems everyone agreed I lacked informal supports. True enough as a young adult with difficulty making friends who had the ones she did have move away or die or in a few instances say we didn’t have anything in common anymore that was true. During the years when I spent a lot of time dysfunctional in one way or the other the only kind of people you could meet were people who to put it bluntly might not make it. Many of my friends killed themselves. I became afraid to make new ones with good reason.

Then I spent a long time where I was still not exactly a model of functionality but I was free of serious depression. I worked at my job, played in a band and had some hobbies on the computer. I gamed a lot and over time not just gaming but the support of games became part of how I spent my time.  Things were very stable for over a dozen years. Perhaps a bit on the hermity side if you are one of those people who only counts people who you meet in the flesh as friends but the nice constant state was what I needed to do well.

Of course in life change is inevitable. I don’t deal well with positive change truthfully. I found that out a very hard way but negative change is certainly a rough one and so I find myself 18 months into it still teetering along. It feels much like walking a tight rope I guess in that it doesn’t seem like very much could dislodge the narrow grasp I have on leading the life I have.

Still one thing I know about myself is that it isn’t helpful to have huge amounts of time with nothing to fill them so when I got out of hospital I was eager to go to work. This work is one of the supports you don’t expect. Years ago I started to volunteer for a game because it was very like a game I had worked on as a professional when I found out the hard way positive change is hard. I wanted to keep up my skills as I anticipated continued physical decline would mean that I might need to seriously look at working in a field that had begun at a hobby, briefly promised to be very lucrative and then fell apart and was then going to be a hobby again.

I accepted what I think a lot of people might have had a harder time with (the loss of what would have been a substantial monthly income) much better than I accepted losing my place. People wonder why. I think the answer is obvious enough. The chance, however positive to earn big bucks was a big change. It falling apart ultimately meant nothing changed. It seems sad to me when I try to look at it as if I were not myself but that is why I think it took far less time for me to just settle back into my routine and part of that routine when it wasn’t too painful included being pragmatic about how to keep up my skills.

However pragmatic I was being when I applied to work on the first Gameforge game I would work on as a volunteer it was the start of a big support you don’t expect. Since I had a lot of experience I climbed the ranks pretty fast to the highest non-paid position and had the things I was used to in terms of people to supervise and so  on. What I also had was the start of friendships which have grown over the years.

The person I worked for first I still do work for although with might be more accurate even though she is my boss she is very skilled in always making sure he administration team feels it is a collobaration and for the kind of game we currently work on and the community we are it has to be. The person who has the charge of the English speaking community normally  is the head of the game so the admins work stretches a bit more and that has been fine.

I told the person who I have worked with all these years that it is odd that I consider her one of my closest friends despite never having met. That can happen when you work side by side for years on various things I guess. She is just one of many people either on my  current teams or who I have worked with at one point or even some of our players who are a not expected source of support.

At this point I do some paid work on another game and almost immediately after that started my days changed. One might be tempted to question if this was from overwork but that wouldn’t be it. Although in a nightmare of scheduling my first day of work coincided with my first day of Hebrew class. In theory we could have to use French, German or English in or work and then to march off to Hebrew class seemed a bit much. In practice we so seldom get to the bottom of the English work I rarely get to help out anywhere else. It’s also only a theory that we only work in three languages as our players speak every language that can be spoken and can break the rules in any of them. I can recognize an insult against someone’s mother at 30 paces at this point no matter what language you put it in which I suspect isn’t a very transferable skill.

My “real” boss in the sense he is in charge of the project I get paid actual money to work on was claiming pretty fast that he knew I would work well with one of my other big unexpected sources of support which was he hired me which was part of why he did. I gather when your boss makes any claim you should agree but I really wasn’t expecting for the shape of my day to change so completely by this part time job.

I am grateful to have a job I can do right now from my bed. Knee operations take forever to make a full recovery from and this being my third one I knew better than to even think I would be at my desk any time soon. I am more grateful still though to work with people who are genuinely nice and caring.  Just as I am about to go to bed most days I yak with my collegue in Germany so he knows things that came up that might need watching and so on. I always imagined if I was in an office situation I would have to make a special effort not to be too task oriented because I had worked out from tv that people talk about a lot of not work stuff at work. Turns out I can shoot the breeze just fine in text. We do both of course but even on days when we have mainly talked about work somehow I feel better for the contact somehow.

I often also check to see if any of the team I supervise are up and at ’em so I can pass on anything they might need to know or if they have been “slack and idle” as we used to say in cadets remind them about my imaginary whip etc… I suppose a serious downside of supervising people scattered all over the globe is it is a bit harder to get them properly afraid of your whip. Seriously I since many of the volunteers are young adults some of whom hope to be in gaming as a career others with time to kill I like to think I can pass on some useful skills. Lately I have seen some of the people I had as volunteers enter paid positions in our company so I suppose I can take some credit.  I had one team member who had had their interview a week before they interviewed for a job in real life that mine had been so tough the real one had been so easy although they asked a lot of the same stuff he got the job without a problem.  These sorts of things do something that can be hard when mostly you are seen in terms of what you can’t do. They remind you that you do indeed do some things very well. Well enough to teach others how to do it and to supervise them. That can be something you can easily forget when multiple disabilities have you on the sidelines of life a lot of the time.

While we are covering online supports there is of course blogs. I am new to blogs. I was always more of an IRC and an email person and when IRC especially started to lose people to blogs I felt sad but not motivated to blog. It is odd as I always wanted to write when I was young but sharing a very personal story with the world is not easy. Yet there is support here. In the comments mainly but you get to know some people more deeply. The other day my phone rang as someone had been concerned enough to call . A person I have known for well under a year but whom I admire.  Sadly I found out the phone rang after the fact.  I had had my phone off for the Jewish New Year and then for Shabbat and after three days with it off the odds of my finding it and turning it on for Sunday seemed low. I am not a huge phone person but if I had managed to miss it in the comments that people cared I can replay the message.

We spend a lot of time worrying about the lack of formal supports and their limited duration. Fretting that without some we can’t do it and I actually still believe that is probably true for how many things we have going on with us right now but it feels odd in a way because for so many years of my life there was nothing but formal supports. I mentioned all the online supports as I think to many they are less obvious but I have a very global informal support system. I think I get some support from every continent except Antarctica. It may be small and it may sometimes not even look like support but it counts.  Some is huge and when people doubt the validity of those relationships I get cranky.

I think the tendancy to dismiss online supports is they look too much like what an autistic adult might spend “too much” time doing. That is typing away at their computers. Years ago when I had time to play games rather than support them some of my friends were people in those games. I knew as much about their life as I would if they lived next door and we met for coffee often. The slaying of giant “bosses” (for those who don’t game bosses have the most loot and loot is a nice thing) as we got to know each other no doubt made it easier for me to be social and nearly inevitably because with the slaying of bosses comes the dreaded use of some kind of speech needed communication I would have to explain my autism (if it didn’t come up before then) and I don’t recall, unlike real life, a single person ever being a jerk about it.

An offline support that one might leave out of supports we don’t expect has been my congregation. Generally speaking society expects various congregations to help their members with the things that come their way but in my experience how much a group meets that expectation varies a lot. When I came though the door for the first time at my local Jewish Community Centre for services things were still going okay for me. They quickly wouldn’t be and had I never made it through those doors I would have been in a much worse mess.

When my life and my living situation and everything fell totally apart a year and a half ago they took care of every detail. I was just to concentrate on getting well and leave everything to them. Since for the first month I couldn’t get out of bed even if I wanted to I didn’t have a choice but I wasn’t used to it either.

Every previous time in hospital I had been “that patient”. Nurses know the ones. They get no visitors or so few they wind up on the nursing staff radar. You inherit second hand flower boquets and days of tv when other people go home and so on. Last spring my room was so overrun with visitors I more feared that they would get thrown out for being rowdy than the pity I had become pretty used to from the staff. This year the timing was more awkward but I was still well looked after. Food arrives on my doorstep,  people have gotten organized about cooking for me. This year cooking is a special concern because I have lost enough weight for it to be concerning. I had a lot to lose but there is something to sterotypes and you will never convince the friends in my congregation I am not one cracker away from death’s door. It’s been something I have had to adjust to having this level of support in real life. Going to a service or a dinner and knowing when people ask how I am they really do want to know and if they don’t care for the answer they will likely set out to do something about it.

I have played in a band for close to 25 years. It is part of the non-profit, The Friends of Music Society, and as causes go it is a good one. I guess that is why in the seasons when other bands did sniff around for percussionists I stick around. I am also on the board so in a way I expect it now not to be so much support as more work. Still we had our first rehearsal the other night. I am in no shape to be there to be honest. Given I cannot bend my left leg we had known for half a year that there would be no hi-hat at some point but stamina wise it was a bit much for me that first night too.

I don’t know why I don’t expect there to be support there. The support is largely in the familiar people, and the familiar routines.  The other way it is supportive is similar to how when I work I can see the skills I have. The same thing happens at band. With my leg being in a brace people were popping up to arrange things for me and expressing more concern but the rest of the time we were playing and I wasn’t getting a lot of leeway on missed triplets either. I made a pathetic plea for some sympathy as I had opted out of a measure of them thinking I might throw-up if I moved enough to do them but we went back to the beginning of that section all the same. I suspect as long as you have a pulse you won’t get much leeway out of our conductor and that is always how I have liked it. It has made me a better drummer and when we go out and play for the elderly or the public or for group homes it is a positive identification to have versus everything else I might spend some of the week being musician makes a nice break and it wouldn’t be an honest break if it didn’t go with expectations on the part of the conductor.

There are more but I should have been asleep hours ago if I am ever going to reset my sleep schedule. Oh hold on there is one I can’t not mention and that would of course be my dog. He again doesn’t fall in the category of support you don’t expect because you expect a dog to be a support but he is the most spectacular dog in the history of dogs. He had his fifth birthday on Sunday and there really are no words for how much he means to me. When things looked very grim for finding housing that accomadated both of us I did contemplate homelessness.  I am too physically badly off for anyone to let me entertain that notion for more than a half a second. It is however a measure of what he means. I think he goes well beyond what I expected when a month after my previous dog I went to pick up an entirely different dog.  He should have been a female from an entirely different litter and my fate was sealed as soon as I said I better just play with him for a moment or two or I would always wonder. Sorry to that dog that was to be but you should have gotten Shadow to show you some tips in all those weeks you had getting old enough to go to a home.

It’s almost a cliche how much a dog can help I guess and so yes people do expect it but much like congregations I guess there is individual variation. I have never met a dog I didn’t like but Shadow is supportive and important beyond any expectation.

I don’t know what will come. I can make some guesses about some of my issues. Some of the guesses are not good. I don’t know if we will get appropriate support in the appropriate time frame. The odds are against it. Things at time look pretty grim but I do have work I enjoy, colleagues I enjoy, friends both of the online only variety and the in person kind, enough granola bars and ensure to support a couple of city blocks through an earthquake or two, some recreation (not enough according to my sister-in-law) and the best dog in the entire world. So while the darkness and the pain and the fear can be all consuming I have marveled at these other aspects of my life. They don’t erase a lot of what is not going that well but no one can. There’s just so much going on some of which just needs to be dealt with and some of which well I have no idea and those are the things that scare me the most.

Overall the outcome is certainly far from known and that is a source of stress but that’s really the way it always is. It is just most of the time things are set up better to hide this fact from us. For people who were very worried or scared for me I wish I had some great comforting thing to say but I don’t know how things will go. I hoped given we know the formal side of support is going to be a battle and it’s a battle that has historically cost me a lot listing the less formal, sometimes totally unexpected kinds of support would help. Now it is time to help my dog who is currently asleep next to his teddybear on the floor because he gained weight this summer and gave up trying to get back up here into bed and try to sleep myself.

Quiet No More

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It has been pretty silent here. In the past month I have attempted a few posts that wound up not being something I felt I could put up for one reason or the other.

On the first of May I went into hospital. I was depressed for one thing and my doctor wanted some tests one to try to qualify me for the ever elusive services so we would not continue on the wheel we had been on of function worse services increase, first sign of improvement services decrease, x amount of time passes no appropriate services at all ad then repeat.

He thought it would be a few weeks. Since they can’t actually treat my depression I don’t think he expected to try too hard on that but they ran a lot of test and scans while they were at it and I was a total and complete mess. Months of dysfunctional eating had screwed up pretty well every thing in the chemistry panel and so on.

My doctor couldn’t quite resist one horrific kind of treatment which I may or may not describe later. He’s a good man with good ethics and I do believe he wanted to help and was probably subject to doctor peer pressure a little… I don’t know. It was awful and harmful and while he did stop it sooner than some would have, saying he thought it had been more harmful than helpful it’s still hard.

So then he thought well let’s eliminate some stress and get some more health things taken care of. The problem with that approach was of course they kept finding big things not small things. I came out of hospital looking like I certainly still should be in…  My knee surgery came up while I was still in so when I finally was wheeled home 3.5 months later it was with a brace on, and an indwelling catheter and a host of new medical woes to be looked into in the months to come.

Through all of this 18 months from when not being able to deal effectively with change blew my life so course until now I have sometimes felt guilty when I blog or read blogs. I felt like I had a dirty secret about my autism that I just realized while commenting elsewhere isn’t so awful.

When there were autism positive flash blogs at a time when I knew mine would likely cost me my freedom at least for awhile again I couldn’t be possible. Off and on for the past 18 months I have felt so angry at my autism. It feels taboo to admit it. Tonight thought I realized why it shouldn’t be. Why I had probably been ashamed for no good reason…

I have a lot wrong with me. Probably in terms of disability the next most serious is my arthritis. I was replying to a comment on a blog about how the response to the attempted murder of an autistic child was dehumanizing to autistics. Despite that being the central premise of the post someone commented calling the victim a burden and out came my deep dark secret.

I was trying to explain why it is never okay no matter how much harder than average it is to lose sight of the person’s humanity. That in my own case I had done that a bit to myself this past week apologizing for being a source of stress and the family member in question wrote back to remind me of everything else I was. (Considerably more positive than stressful thankfully because in my depression I had lost sight of that)

I admitted I get mad at my autism. I do imagine that without it 18 months later I wouldn’t be hanging on by less than a fingernail. It is big to move for everyone. One of the higher things on the stress scale I gather but millions of millions of people do it all the time and very view are still totally messed up 18 months later.

Still the anger I feel about the degree to which my autism makes dealing with change not just difficult but for nearly every kind of change close to impossible isn’t really that different from the anger I feel when my arthritis eats up yet more of my mobility and there is a mismatch between what I think I should be capable of doing and what I can. In both cases you feel angry, you reach acceptance and then you move on. In the case of my current upheaval I do seem to be breaking records in the not able to move on category but that does not make me less than human.

I had felt like a traitor to the cause I think at times when I felt anger or even fear when it came to my autism. Sometimes I feel like it may have cost me things I dearly wanted even though it might be more accurate to think a medical system that makes artificial barriers when it comes to autism and decides who gets support based on things that don’t have anything to do with their actual autism could be a culprit there.

Very recently someone who has never met me made a decision about the only service there is for me at the moment, The  only service outside of hospital that ever had any success but this administrator has never met me. She concluded it wasn’t clear enough the service even helped me and therefore didn’t want me to have it. In the end she had to agree to every other day for a month. Her reluctance to have me seems to have trickled down to staff who previously were capable of treating me like a human but now focus on that date and making sure I don’t get a second too much of service. Somehow this week a a doctor’s appointment they had nothing to do with and Rosh Hashanah counted as service so  saw them all of twice not the three to four times we should have.

I cried about this when I heard. Right now things are very tough for me most of the time I am alone. Without services I have no chance. I felt angry too as since I had very noticeably gotten worse each time service from them dipped below about 4 days it couldn’t be clearer I benefited. My case manager pointed out I don’t get better and my affect doesn’t always match how I am feeling.

I felt discriminated against based on having multiple disabilities. My autism causes the affect mismatch. It sets up this weird situation where if I fall into a routine activity I guess I just do that activity and the other concerns are absent for a bit. I look better but when asked how I feel – the examination of which isn’t part of the activity- I have to answer truthfully and the answer hasn’t been good lately.

Apparently as far as depression goes it is very rare that a person doesn’t respond by the 4th medication prescribed so we have a support system that is geared pretty much entirely to a quick chemical recovery and I don’t fit. My autism gets blamed for the medications not working rightly or wrongly. My autism gets blamed for other interactions with the various teams being tricky (rightly in those cases I suppose) but is it fair that while extremely acute my level of service was based not on that but by the perception of someone who has never met me? Even the team members who don’t especially like me know about the affect mismatch and I would be surprised if anyone who ever worked more than 6 times with me could say with a straight face I did not benefit.

No I don’t get well. Part of why I don’t get well in a nice circular way is the continual stress over services and support. Part of why they don’t see me get well is even at the longest time frame they offer they are not around long enough to see it. With this one I have wondered if I will see it.

My battles are not that different of a parent with a child with autism. Services and support being the usual things that drive people to despair. I get it. Because I am also depressed unfortunately the lack of those things has caused me to want to give up but I have done the appropriate thing when that was the case. The option when you feel that bad is not a good one. I imagine if there was a separate child me I had the charge of and I could not cope it would not be nice to have to say as much. To accept whatever might come of saying this is too hard. Something awful will happen. However it would be the only ethical action to take.

So now my dirty secret is out. I sometimes am angry about my autism. I sometimes wonder what my life would be like  without it. I am not quite sure having typed something similar in a comment why I felt such shame about feeling like that for so long because of course it is so similar to every other condition I have that is a departure from the “norm”. If it is okay to cry at the mobility arthritis robs from me well why feel like a traitor for crying sometimes about my autism?

Part of why I was hesitant to blog again is everything is still in turmoil. I have resumed some of my usual activities in creative ways for now because of the immobilizer on my leg. I have resumed my part time work although I do it from bed. (Don’t get any fanciful ideas about what I do for my work based on that)  I am doing my best but it’s been stressful and hard and I know my doctor isn’t sure what his next logical move is. He’s semi-annoyed at my orthopedic surgeon for not doing the first kind of operation he planned. I would have been immobile longer giving him more time to scramble to find something better than the 100 minutes of really low quality house cleaning that will soon be all the support I get period. Oh and the 60 minutes a month of my shrink, various and sundry other specialists slicing and dicing my body etc…

Still and all although I spent the bulk of my life identifying as an alien within myself to get me through the day, and even though I had a doctor who eventually announced I was right about that due to him concluding the sum total of everything different about me must be something in and of itself and wanting to look into that I am 99.99 percent sure I am human. While the occasional twerp has compared me to an animal and so forth the only one who gets to take away my humanity is myself. I do reserve the right to opt out of being human when too many humans appear to be doing and saying inhumane things.

People can only do what they can do and I have not had the energy to be out there too much on the outraged front as far as the latest event goes. I know there will be more until the culture we have changes entirely. It has to be challenged every single time any rationalization is made for killing a person based on well anything. I was going to say disability but recently someone was murdered in a brutal way for being transgendered and that is not okay either.

It is possible to say no it’s not okay to murder because your child, or charge has this or that and the mean school district or mental health people, or various other service providers are being insanely difficult. You can in fact acknowledge the many ways we could build a better system without linking the need for that to murder. We need better support in my own case not so I don’t succumb to my depression and give up totally but so that I can become a tax-payer. I may score in the totally hopeless range in the scales for daily living and adaptive behaviour but on the IQ test we had quite the opposite score so how did I get to be 45 and still be a drain on the taxpayer instead of paying taxes? It’s easier?  I fall through the cracks? Those questions are the reasons I am told but I phrased them as questions to highlight how silly it is.

My bottom line when I try to explain why my current life makes me unhappy comes down to it lacking a lot of the things that adults take for granted their lives will contain often without too much effort. If I thought all those things were truly impossible I would not get upset about it at this point. I would make my peace with it much like I know I will never climb a glacier again. It is knowing I could do so much better with support and knowing how horrifying my life is without it that makes me upset.

Ultimately I guess I cannot dictate to people as much as I would like to that whenever they see a rationalization for murder they challenge it.  For anyone but myself I cannot say please you can say how they system needs improving without linking the current state to an excuse for murder and so it goes.  I took a lot of tests this summer. Blood was drawn maybe 50 times and the one thing that did not come up in all those tests is that I lack humanity so please don’t rob people like myself of it with thoughtless comments.

You Need a Mommy

by

I have been quiet. Things have gotten more difficult and my capacity to cope with anything had taken a plunge downhill. I did not think it was even possible anymore but one should never wonder how much worse things can get it seems as the answer always seems to be that they can indeed get worse.

 The wisest words about my situation were spoken by a three year old Friday morning, I had agreed to look after him so his mother could attend some kind of course near where I live. Since the plan was for his mother to drop us off at McDonald’s so I would at least eat and he would have access to the play structure or the equally as interesting swivel chairs she popped into the bank on the way before leaving us for a class.

“Do you have a mommy?” he asked. Since he was not distressed I took this for a question and not a pronoun issue. “No,” I said then as that seemed inadequate I amended it to, “ I had a mommy”. He did not veer into issues of why I didn’t have one. I seemed to be confirming something he suspected so he seemed quite satisfied with the answer. “You need a mommy,” he declared with conviction.

That is no doubt the most succinct summary of my situation that there can be. If we define “Mommy” as someone who attends to your basic needs without question, who while she may be exasperated at times by those needs still seeks to fill them without faltering in her devotion that’s also the best treatment plan yet to be devised. The fact is I don’t have that kind of “Mommy”. I never did. It is certainly only that level of someone else looking after the details that would remove enough stress to just get better at this point.. There’s no such figure in sight though.

I do need a Mommy. A three year old being able to see that clearly is about the closest thing in my life to a mommy like level of insight. While his own mother worries about my eating and lack of laundry access enough to do something about it more helpful than telling me to remember to eat, part of the job description of Mommy no doubt includes this sort of cutting to the heart of the matter. He would already be an excellent Mommy if the task were not beyond his fine motor skills, his height, and certain legal issues. Also let’s face it a Mommy who has to be sold on washing their hands and holding your hand when crossing traffic is a bit of an iffy proposition. Still he correctly identified a need and a solution with 4 words. That it’s an unworkable solution doesn’t make it less correct. I have been offered reams of unworkable solutions by much taller and learned people than he is. We all grow out of the clarity of being 3 I suspect. There’s a wisdom afforded to those new to the world where a lack of experience with how the world actually works gives them the least cluttered view I think. I only suspect rather than know that people grow out of that clarity because it seems to take some residual 3ness to accept what is said as wise not baffling. To not dismiss it because it comes from someone who rarely said anything 6 months earlier and still is more prone to ear piercing tantrums than one might hope.

I do, indeed need a Mommy. Perhaps they should spend some of the money they currently spend documenting how my not recovering from my depression is somehow my fault so they can excuse the numerous failures to use the resources that do exist to hire a Mommy for me. I will wash my hands, without prompting in all likelihood but the rest would at least in the immediate future be up to them.

For the past 16 months in the wake of my world essentially falling apart due to a change far larger than my capacity to handle it and subsequent medical and bureaucrat errors compounded with the kind of life that seems stuck on the setting of pour on the bad things I have been treated to far too many people weighing in on what I need. Most have so little clue about autism that they can’t even see how ludicrous their simple solutions are and for some reason I am expected to listen to the same non-solutions get voiced by whoever it is that is dealing with people at the end of their capacity to cope.

One such person just left. I know how they see it. They see me as unwilling to do simple things like remembering to eat. Clearly to her and 100 like here because I have been capable of caring for others this is a choice on my part. I have ensured others are fed, bathed, even continue to breath at the extreme so not being able to meet my own needs has to be choice. I just need to choose to be better and apply sufficient effort. We will have to overlook where I would be if effort were sufficient or any of this was an actual choice. We will have to overlook the judgement that comes as part of these non solutions. Implicit and sometimes quite explicit in these solutions is an accusation of not trying hard enough, not wanting to be well, of exaggerating how bad it is and so on.

It’s hard to hear that you are not trying hard enough when you have tried and tried and any time you were making progress supports were withdrawn abruptly and care plans overturned. Apparently if I only wanted to I could replace all that with reminders from my tablet or a schedule. As if I have not spent my entire life experimenting with variations on that theme and don’t know that I have to already be doing much, much better than I am for that to be even a stop gap solution. Stop gap because even at my best my I don’t get close to desired capabilities in many areas.

I live with contradictions. Wanting to be an effective self-advocate while going to great lengths to try to blend in even when I know full well I cannot even at the best of times. Accepting my autism on an academic level, believing that acceptance and actual inclusion trump faux awareness but being a big barrier to my own inclusion.

 The past two weeks were even worse than normal. Last Friday night had me approach “my” seat at the Jewish Community Centre where we hold services to find someone in it. Some weeks it has come up I am coping well enough to handle this. I do after all know it is irrational but for every place I ever sat more than once I have a seat.

I arrived with our congregation president. She’s quite assertive and willing to make a scene which I desperately did not want. I froze on seeing my seat occupied. I was not able to ask if the person could shift one down. I’ve asked before but it wasn’t possible even before I retreated to the wall to contemplate my several all seemingly impossible choices. My friend first tried to convince me to sit where she was going to. I could only shake my head. I knew what would follow would be a fairly loud eviction from my chair by her of the interloper and feared I would have a meltdown that was a bit more obvious than the sort of implosion I was having then that had me rooted in place and incapable of action or speech but at least not in tears. Fear of a scene got me to the kitchen where as luck would have it the president’s partner was doing some task or other. She called out where I was and instantly had the insight I might be hiding but it was too late. My seat was indeed free Further escape to the bus was not even an option. I had been spared only listening to how she put the eviction.

 That however much I dreaded this action that this was actually the best solution should be stated not just because I know the person reads my blog because any contemplated other action or reaction would have made things worse. Had I fled or wound up in tears I don’t doubt both that I would have worried my friends more than they already are and in all likelihood had a rabbi on my doorstep instead of an email from him during the week I don’t doubt. This way much of the rest of the evening played out in the usual way.

 I returned to the room. I sat down next to the interloper who is actually a perfectly nice man when he is sitting somewhere else… He, I think trying to be helpful and inclusive, said the sort of thing people say when they think the difficult part of change is not understanding that it happens but coping with that it has happened. “Usually we start on page 120 but some weeks it might change.”. He may have even been worried that this week would indeed be one of those weeks rather than seeking to inform me of the obvious. I am not as invested in starting on page 120 as I am as my chair and the blue cup though. It’s almost inevitable that we will in any case.

In the aftermath of my implosion and escape I was still in very concrete mode so all I could do for 30 seconds was wonder why he was explaining the order of service to me 20 months after I started attending, Then I realized he was trying to be helpful but I had already managed to sound a little annoyed I suspect when I had managed to get an, “I know”, out of me,

I didn’t know what to say really, It was thankfully a day where the theme was sombre enough that eviction from the chair he chose first wouldn’t I hoped stay in him mind long. I wouldn’t have been able to articulate why I could know that someone might be in my seat and simultaneously be bothered by it or why on some days I have the capacity to sit elsewhere and cope with the dissonance that arises and sometimes even surplus so I can still get something beyond coping from the evening. Our rabbi who’s rabbinic sense either tingled about me or who more likely was told I was not doing well emailed something about how when the wine glass is already full one drop is enough which again is something I know but did make me feel a bit less guilty.

I so wish that this fact that things can and do change that had eluded me. That it was new and transformative knowledge that having been given it I could work with it If only it were knowing and not the varying capacity to cope that is in the wind. I would have transitioned seamlessly to a new home and not gone through any of the past 16 months. This not so missing piece of information presented in what was probably a sincere attempt to help left me mystified. This was something I know. Oh how I wish it was new and exciting and transformative information that I had just been missing. I love information. Sadly the most interesting part of this piece of information was it being offered up.

A similar approach could be taken with the wine analogy. I know exactly that something very small can be the one more drop that makes my issues less invisible and more visible. I struggle with the competing desires of really accepting my own autism enough not to hesitate in areas where getting my needs met means making a scene and being quite private and wishing I didn’t have needs that were not met without some level of hassle and intrusiveness. The difference being that however tritely, it sums up my reality of a life spent too close to the edge of capacity, it did ease some of the worry about my needs being a hassle, or worse beyond comprehension, I suppose something cannot be in danger of seeming trite without also being very true. Even when it is truth you know too well it can help to hear others frame it. I usually think my self-esteem is actually quite good but truthfully that tends to be in areas not impacted by my autism.

It makes no rational sense at all to be more apologetic about a melt-down over a chair than the bus kneeling when it picks me up but that’s part of the ongoing contradiction I live with. As is trying to encourage actual acceptance and inclusion while having as the biggest barrier to inclusion my own desire not to be difficult. I don’t have the kind of in your face kind of bravado some seem to have where their diversity dang well better be accommodated or there will be heck to pay, I can have it for official, tax payer funded entities for some reason. I expect official support to accommodate me. It doesn’t but that doesn’t lessen my expectation for some reason, It again makes no sense as of everyone in my life the group most likely to put themselves “out” on my behalf are this very group. They have shown it over and over but one can loathe Voldemort speaks for presenting autistic people as a burden and simultaneously seek not to inconvenience anyone. If I was someone else I would probably blog about how annoying I am for that contradiction. Wait I guess that is what I am doing.

 As my young sage worked out if I had a Mommy she would do all that heavy lifting for me. I have seen mothers ferociously advocate for their young over much more trivial things, I have similarly advocated for other young charges without a drop of regret for being a bother. Did some one really ask me loudly, “What’s wrong with that child?” when boarding the bus carrying one of my charges. Strap yourself in ladies and gentlemen because the bus ride is about to get a bit bumpy. Did a similarly enlightened citizen really express when passing a friend and myself and the same young charge on the beach how much better it was in the old days when people enjoying their day didn’t have it ruined by looking at children like her? It’s about to get educational. Did her companion while eying my friend who was native really nod at her and mutter something …? You get the picture. It didn’t wind up educational My friend was used enough to racism to find it amusing on some level and pity them for the fools they were and so was expending some effort to keep me on the blanket eatin g my fries and not running down the beach providing commentary about who the real blight on the day was. The offending child had not been seated a bit further up from us and was entirely too absorbed in digging in the sand to need to do any of the explaining of the too frequent kind. So we moved on.

 My entire life I can be a lion for other people. I can be that lion even in areas where it matters far less than for racism and able-ism. Heck mess with “my” gamers and anyone who has worked with my knows that my rants will be somewhat endless.

 I think as much of my silence post the explosion of followers after my post about awareness came from this contradiction. I was overwhelmed by the sudden unquiet nature of this corner of the internet, my life did take several turns that meant adding the expectation I write on top of everything else I couldn’t deal with was too much but I also felt like a fraud of sorts.

 I’ve said my acceptance is always an ongoing thing like pretty much every other thing about my autism it defies quantifying. Compared to when I was 20 and Data was my role model and my goal the same as his – to outgrow my programming I am a model of acceptance. Having realized at some point that Seven of Nine was the healthier role model that was huge growth. For those of you somehow unfamiliar with Star Trek two helpful bits of information. First if you actually know me in real life or at somewhat close to me in the ways people wind up close to each other on the internet it is probably best if you not admit this. You won’t exactly be dead to me but you will enter a category of people I have some doubts about. Second in the interest of understanding what I am saying Data was an android who was perpetually seeking to be human. A high tech Pinocchio who for a time seemed to embody my reality in a way that stirred me.

 Seven of Nine was a human who had been assimilated by the Borg. Then rescued by the crew of a later series than Data was on. I won’t trouble those of you without a background in the mythology of Star Trek with why a Borg is a better role model but it boils down to her being quite different from the crew she found herseflf living among despite a certain similarity. She had been human but some elements of being Borg could not change without killing her. Having been Borg since childhood was it seems as pervasive as autism is.

 The Borg value knowledge and seek perfection. While their method of getting both is a bit horrifying one can hardly argue with the goal. Seven herself is a logical, very rational, intelligent woman. She sees the humans around her and seeks to be more like them in the ways that she values but retains her sense of some of the things she values highly no doubt as a result of a life as Borg as being desirable and worth holding onto all the same. She grows emotionally but while she has doubts about various aspects of humanness those doubts are expressed in far healthier and realistic ways than saying grabbing an improved emotion circuit. She is able to function as different in a noticeable and to some degree even feared way (her perfection as a role model having grown I suppose as fear of autism has grown) and still be valued by others and herself. She does not approach a situation with the mindset of one who’s difference automatically, even to themselves makes them less.

 Some may be angry at being conditioned to approach very key parts of identity this way but conditioned we are and it makes some sense. It is adaptive to some degree to know the ways in which you differ and take them into account the problem really is the internalization of the message the undesirable difference is always on the side of the labeled.

 The Doctor was more prone to morbid reflection on his different status than Seven but while she had more life threatening malfunctions of her all important cortical node than he had variations on crashes she is more at peace with her reality. She grows towards that which she values of what she sees and is clear on what she does not view as worth pursuing. She bends over time on a few of those things but overall her sense of self worth is not negatively impacted by being who she is. Unlike myself, who finds myself apologizing for a far more reasonable accommodation for my autism than what her crew goes through to get her spare parts she doesn’t tend to apologize for that much greater hassle. She occasionally expressed some wonder that they would but her basic right to exist and by existing have her needs met without too much quibbling about how inconvenient those needs are is an underlying assumption.

 I am not really sure if I will get to that point in my lifetime to be honest. It’s a bit reflexive even in the most accepting crowd to feel embarrassed by the joke I don’t get or the entirely irrational yet absolute need for the comfort of sameness. On the same Friday that my pint sized friend correctly identified my need for a mommy the opinion of the congregation about which tune to use for a prayer was expressed in terms of same of something new. My immediate and strong assertion of same drew some looks but that included one from the person leading who seemed to realize I was so vocal that it should be the same it probably should be. At times when people have really pushed the matter, I have articulated that given the fact that change is a bit inevitable my preference is for them to pick a few things and for Pete’s sake not change pretty much every element of the service, They are a bit self-regulating because the prayers inevitably sound better with the usual form and tune so without my having to push the matter at all a too heavy dose of change tends to be followed by months of barely deviating at all from the usual until people have forgotten the horrors of when they tried this tune or chose this prayer over another. I suppose there is some automatic comfort in knowing you are with a group of people who when faced with the question of why we do some fairly strange things are about as likely to answer with a shrug and “tradition” as a lengthy discussion what various scholars say on he matter. Being a fan of both it’s hard to go entirely wrong.

 That at my worst I feel I have to apologize for being me in the setting most likely to accommodate for me is sad for me. I suppose if like the various bearers of support the government dispatches they were actually unwilling to accept me it wouldn’t bother me at all to have had the please don’t make a visible scene kind of reaction to what was a very simple conflict between a need at an extreme because of how badly everything else was falling apart and someone else simply being there first.

 In a setting where I am included enough to be obviously to others part of the “in” crowd despite being a noticeable outlier makes this failure very clearly mine. Another contradiction. Absent the rage I can have for the irrationality of entire systems that cannot take into account the existence of a person like myself. Being angry at entities as faceless as governments and health authorities or Voldemort speaks is easy. Seeing the ways in which I am an obstacle to myself considerably harder. Fixing that issue having identified it, as I say a work in progress often undone or mostly undone it seems by whatever else life is serving up.

 It’s much harder to say I create additional issues for myself by not accepting my autism on the level that some people in my life are prepared to. I know some of that is a product of how badly I am coping overall. Some however I think is always with me as an echo of years striving to be what I could not. I have for the most part ceased seeking the impossible and even identified the way in which being “normal” might be worse but it I a bit of an infinite acceptance loop. Having overcome trying to overcome my autism I am left trying to overcome apologizing for that which cannot be changed. In better times that would be such a faint echo as to not register much on me mentally but at a time when a child can identify that I need a Mommy that urge to not be a bother, to not have people need to alter anything for me is manifestation of non-acceptance. While countless articles will blame this reflexive devaluing of myself on the society that creates and nourishes it there is only some truth to that. It is true messages about your non-normative reality get internalized. How could they not when the entire format of you life has you as a case in need of management rather than a person? When at an extreme by being able to articulate some of your struggle you are seen as a danger to those who are “really” autistic simply by doing so. People might believe your life isn’t 100 percent tragic if you describe it. People might see that even at the grimmest of times your life is a life and has value and meaning not just to yourself (which should after all be enough) but to others. Still a life lived having to state those very things is taxing. Your default position shouldn’t be having to justify you life as possessing value despite the dificulties. It’s tiring.

 If I could lay all my own lack of acceptance solidly at anyone’s feet I would be off the emotional hook but it would not be honest. I don’t know if I will live long enough to be in a state where I don’t feel apologetic for my less cleat cut needs. Lacking a Mommy it is my responsibility to articulate what they are. One would hope that when presented with a situation where I can’t do that and someone else is both willing and able to champion my needs I could just accept that without embarrassment and without apology. I can’t though. Not right now at this time in my life when so little is certain about the shape of each day or my ability to endure it.

 It is always the small things that we fail to account for that wind up becoming big at a time like this. The bursting into tears on the bus when one cannot conceive of either going on or ceasing to go on. Well okay that seems like kind of a big thing but the crying on the bus itself is small in the grand scheme of things. The trivial change not coped with being harder to predict than the huge one that most would by now say I would do well to avoid. I need a Mommy and while some might say I have a small army of such things standing by of both genders standing by to secure things like my chair, demanding that I eat, and so on that is somehow not quite as comforting as the child’s version of a Mommy entity that can deal with everything for you and about you withought their devotion to your needs faltering. The presence of so many people in my life tackling those practicalities from time to time should make me more certain it is okay to be as I am.

The kind of conviction I have when I place it in a spiritual perspective that it has to be that I am as I intended and by extension then my life has value equal to other creatures is sometimes starkly lacking in my day to day life lately. I suppose the real advantage of the love of a Mommy like entity over that of G-d is like the kneeling bus it’s concreteness. When you are young enough to be constantly with your Mommy or people Mommy enough like to be an acceptable short term stand in for her you always have that care and concern, and love and acceptance of the miracle you are being reflected back. When I am feeling only slightly better than I am now I can quite easily access the less tangible form of love and acceptance and renew myself on that but right now even that is a task beyond me. So I do in fact need a Mommy.

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A Day of Laundry, Chaos and Rest.

by

It’s been a terrible week. Care that was supposed to happen and was somewhat vital for me didn’t. My father wound up in hospital briefly as well and there’s still all the grief and all the issues I had before my mother died. Felt very much like I was dangling from a precipice with something about as thin as a spider web to cling to but without the tensile strength.

I didn’t cope well. Mostly I coped by staying in bed and asleep as much as I could which isn’t ideal but was the only way I knew things wouldn’t get worse. I did decide I couldn’t bail on my band as the Country band I got roped into playing the drums for (The Haywires) had the concert on Thursday night and it’s a small group. Oddly popular it seems to me given how easy country music is to play. I take my responsibilities seriously so as much as I would have loved to just continue to stay unconscious as much as I could I wouldn’t stand up our group or the audience which admittedly not big was about three times the usual crowd so I went.

All my autism related problems get exacerbated by stress of course so my ability to shift my attention, get ready for band and get there was so much more complicated than in 2011. I actually started preparing four hours before I needed to be there and I still only made it by 4 minutes. Along the way I got one of those calls I don’t believe are so random. Without the call I probably would have hid out all of today in an unhealthy way, probably dragged myself to temple to not cause worry and then gone back into full on hibernation mode.

It wasn’t anything stupendous. It doesn’t take much to make a difference. The person had read my mother had died on Facebook and thought since she would be in my area she would offer to come by and give me a hand with my place, reasoning between my worsening physical issues and my grief I could use help. (I think she was probably among the many volunteers who packed up my last place so honestly she probably thought I could use help anyway)

I’ve grown in my relationships with people. It used to be hard for me to accept help. I felt embarrassed or ashamed. I had done a lot of that growing prior to my huge, life blowing apart reaction to my move early last year or the levels of help I had then would have been unthinkable I suppose. I didn’t have any choice in the matter really as sick as I was if people hadn’t been willing and wanting to step in and manage everything I could have done little about what needed to be done.

It’s 15 months later though and life hasn’t really improved. It many tangible ways it is worse. Every time my doctor got enough supports in place that we made forward progress someone would undo them with a stroke of a pen and so I don’t even take surviving for granted. When you can forget to eat for long enough that more and more kilograms vanish and forget just about everything else even if the long term effect of living like this wasn’t wearing me out that in itself would be dangerous.

There’s no appropriate support to be had. I fall through a gaping hole in the system that doesn’t know what to do with people who have both an autistic spectrum disorder and a mental health issue. My autism they say makes my depression untreatable but our entire system has been reworked to a medical model. The very premise of everything they do now is that some magical pill will make the patient better if only you can get them to take it. Eventually they will, as they have before say the autism is primary and I am thus not even their problem.

So we struggle and struggle, and get exhausted and mad and sometimes just want to give up entirely. As long as I can still get mad I think I will be okay actually but I know that eventually that anger turns into resignation.

So this woman who is close in my age but has young kids, wanted to come by and help but my place isn’t suitable for a toddler. There was a time I would have just said as much and not had the temerity to suggest something alternatively helpful. I don’t have access to a washer and dryer here and my landlords suggestion I suck up to the people in the two other suites where he managed to put ones in hasn’t exactly seemed reasonable. So I said how about if I went there and did my laundry instead and it was agreed.

That meant an early day for me. My schedule has become more erratic due to the international nature of the little work I do and I don’t unwind from band easily and tend to be up until 4 or 5 am on band nights so I was a bit hesitant. Yet I knew two things – that I did in fact badly need clean sheets and so on as I had last managed to have access to laundry facilities in this town at Chanukah, and that the guarantee of eating at least one meal and having some human companionship was not something I could afford to miss.

I miss being with kids. When I did respite care my charges grew up and while I continued to do the adult care for the only client I kept when my arthritis got worse kids are another thing all together. So there was a certain appeal to just spending time with a three year old. I had looked after him and his brother during the High Holy Days but had not seen the little guy since so my better instincts weighed things out in favour of going, of making the healthy choice for probably the first time this week.

It was a chaotic day. The three year old had grown up considerably since fall and was very verbal and very keen to tell me how things should be. He was also very eager to be helpful with my laundry. So that was enjoyable as they had a front end loading machine I actually would have gotten a lot sorer without my miniature helper there. A noisy day as well of course. As said three year old could and did have a few champion tantrums when tired, hungry, or surprised but that’s part of the package.

Improbably we managed to get through all the laundry as other changes kept developing to the plan so I wound up staying until it was time to go to shul. We had a brief period where we were left with just my three year old over-lord and he had a brief and complete tantrum at finding he had been left even though he had been fine with it when his mother said as much. I pulled out my tablet and he was quickly lured into playing with the piano program on there and then a board game. So I played with him and monitored my laundry and it was briefly almost quiet until the older child and a classmate arrived.

I was then in demand as an improbably old playmate but all the kids were keen to involve me in some sort of play about a monster. So the older one demanded I be various things the younger one protested no I should be a person until vampire was suggested. (I had tried zombie and werewolf to loud protests from the toddler) I immediately objected that I couldn’t be a vampire without a cape as the other vampires would make fun of me. (Vampires have standards I gather) That set all three children to assuring me no problem and going to get a cape. I remarked to the mother, that I had meant that as more of an obstacle than it was but sure enough a child sized reversible, batman/superman cape was produced and the 6 year old on seeing I got it on the wrong way around the first time gave me a lesson in how to get it right. I think I must be good for the self-esteem of children because I actually do have problems with things like that although for this particular cape I just hadn’t paid much attention to the fact that of course the batman side must be the vampire one. Silly adults.

It was fun enough to forget everything else. I don’t have a lot of energy. When you don’t remember to eat, or take your thyroid medication or much else and spend too much time sleeping at times and not enough at others well you get run down. Still I managed to hunt the kids as a vampire for a reasonable amount of time until allowing myself to be slain by the youngest so I could go back to the laundry.

The kids suspected a trick. I kept saying, “I am just a normal human doing my laundry,” as they lurked so I had to throw my arms up to a vampire pose and bare my teeth from time to time to get them scrambling. I don’t single task well right now so this child generated multitasking was enjoyable. I felt almost competent.

You shouldn’t feel refreshed after a day of endless loads of laundry and keeping up with high energy kids but I did. Even before we got to the Shabbat part of the day. Earlier in the day when the house had contained a more manageable single child who had been recently fed and was thus content we had talked a bit about the challenges of Shabbat for her. She was torn between her desire to have everything Shabbat ready and the fact that the kids pretty well undid everything as fast as things could be cleaned. She asked if things looked better than when I arrived at one point and the truth was really they looked different but that didn’t matter. I couldn’t remember when the actual candle-lighting time was even though I stick it on facebook for those who like to do things by the book. Shabbat is much like any other thing you think you feel like you don’t have the time to get ready for in that it still happens and sure enough the candles did get lit. Food was on the table and we ate.

When the eldest found out his mother was basically sneaking out to shul when she was honest that she wasn’t just dropping me off he wanted to come. He loves services but hadn’t slept well and we don’t finish until close to 9:30 so it’s not exactly kid friendly. I joked that she should keep this up and then he would rebel when he was old enough by always going to shul.

Services were much like always and not like always. I didn’t get to sit in my chair. I suspect there may have been some concern when I didn’t get there before things started as the importance of being in my chair means being early is practical. There had been some discussion between my friend and I about the temptation to just hang out with my dog and not go but I knew that actual worry would occur if I skipped entirely. We arrived half an hour after it started but we were not the last to arrive which is typical for our congregation but not so much for me. I must have been oddly healed just by the rambunctious company of the children as not being in my chair was not as distressing as it can be sometimes. There have been times when I go to great lengths to be in my chair.

There were several not so regulars at services tonight which I also sometimes consider distressing but I coped with that as well. People talk about inclusion a lot but they don’t tend to think about how the things you can’t control impact some people in your congregation. Everyone is trained not to mess with my blue cup by now but of course we can’t ensure that everyone is always there who my brain has decided is always there and that no one new come and so on. I know it’s not even healthy or rational to want to control that but my reaction to those human changes fluctuates. They are things I cope or don’t cope with and oddly enough after what should have been a day one would expect to leave me frazzled and frayed and clinging desperately to both my chair and my blue cup I was fine.

This was my second time being able to say the Mourner’s Kaddish among my friends so it should be easier and in some ways it was. When we got to the mediation we say before and I got teary. Hands reached out from both sides just as a matter of course. A year ago this sort of contact would have been difficult for me but now it was comforting.

It was hard when it was all done to accept the condolences of people who had been travelling the previous weeks. I somehow keep expecting this whole mourning thing to be tidier than it is. People keep telling me it won’t be, especially for a mother but I can’t stop wishing it was quite so tidily contained as the structure of the year of mourning suggests.

I’m very tired now of course but mentally feel better than I have all week. That’s somewhat normal for Shabbat but I suspect the invigorating effect of child’s play helped a lot as well.

Part of tonight’s service the service leader talked about what Reform Jews believe. It came up in contrast to the very precise rules and directions in the Torah portions this week. Rational is always part of the definition when reform Jews define themselves I’ve noticed, and I always considered myself rational and still do. I know a lot of atheists who by the very act of my engaging in any organized religion have now written me off as irrational but there are not many people as rational and logical as I am day to day.

You may protest well there is that notion you own chairs that are essentially public etc… but my preference for things to be the same is something I have to put up with while getting a similar scolding from my brain. Still until 15 months ago I only had believed in one miracle. One single time where something happened that I could prove fell outside the laws of physics. Perhaps the easiest kind of miracle to believe in I guess where you can do the math and say nope a falling body of your mass shouldn’t be able to wind up in a concave indentation in the mountain on top of the glacier I fell off of. I had like a moron reached for a can once we were safely at the top and unhooked from each other. I had no time to react in my fall and considerable time to lie there stunned and listen to my team speculate on which blobs and bits might be my body before I could rouse myself to yell I was in fact alive.

The miracles that are hard to even recognize though are the ones like today. How is a day filled with children and laundry and a rush to services in anyway miraculous? We could miss the miracle in there if we didn’t recognize that the deeds that sustain us against all odds may be dressed up as the totally mundane.

I have thought a lot about the fact that having spent the better part of a decade, after realizing I just could no longer try to worship Adonai in an Anglican setting, and getting up the courage to actually go to a service and join a congregation, I did so at a time when I was actually doing very well for me. Without that sudden burst of courage that got me across the threshold of the Jewish Community Centre I would have not had my rather big gang of people to see me through the worst of my health crisis. I would not have the fairly steady supply of support and encouragement both practical and emotional. I’m alive due to a burst of courage that experience has told me really couldn’t have come solely from within.

I had previously often referred to myself as a hermit but our congregation doesn’t believe in hermits I guess. While I was still in my pre-crisis mode brought on by my move I had more social invitations than in probably the entire prior 20 years and had started to do more than just survive them ,which is always the baseline expectation I had to go into them with, but to enjoy them. Call it a sudden, improbable social growth spurt if you must but it was a miracle.

Part of our belief is that we are partners with G-d in the repair of the world and as strange as it would be to describe a day spent doing many loads of laundry and being bossed around by children as miraculous I am in better state of repair now than I went into the day in. I don’t know about the world but as I am part of the world thus far my repair has to count for something I suppose.

Through this long ordeal there have always been these perfectly normal seeming things that are not so normal for me. Long ago most of the friends I had close to my age died or moved away. So even spending the day in the company of someone close to my age was not typical for me. I couldn’t imagine making friends and wasn’t even convinced new ones were not more trouble than they were worth. When you have serious social anxiety and social skills issues you can of course rationalize and probably have to to some degree, why you don’t try harder.

This was just a woman trying to be kind and useful in light of the fact my mom had died and I was struggling. But there is no just for me in that sentence. The ordinary parts of life have been the most elusive for me. I choose to see the hand of G-d in that I somehow do feel better. People inclined to be be blind to the everyday miracles might just say well this person was just filling a community norm. It’s right there in black and white to comfort the mourner.

I always prided myself in not being all what I phrased “hippy-dippy west-coast” like inclined to see the holy in everything and in the past 15 months I have realized how very wrong I was. I remember being really frustrated less than a year ago at the ingratitude of the people during the Exodus. I protested that they had lived in the time when miracles were the most obvious and they were getting direction straight from G-d and yet they complained about the food and so on. It drove me a little crazy really as I really wanted that very explicit direction and while some of that was coming more from my depression and my autism another big part was still that I was failing to see the less obvious miracles and thus be appropriately grateful for them.

Bread isn’t going to rain from heaven but the oneg might keep getting suspiciously large so that there are enough left overs to keep you going for a few days when living on just a disability pension while having to replace your clothes and so on is making life a little more stressful.

G-d isn’t going to put up a sign that says go here now and do exactly this it seems yet I can’t deny that as the only place my courage could have come from as far as even meeting the people who would become more than my congregation but also many friends. I had sat and prayed and studied and known where to go for ages and had never, not once, been able to actually get myself there. I’d even wept over my failure to do so. It had to happen that I managed when I did or I would not have survived I am certain but at the time while being shocked and amazed by finally getting there I didn’t really properly attribute it. I didn’t know what was coming but I do choose to think G-d did.

There are all sorts of theological debates that rage about whether as a group, we even believe in an interventionist G-d at this point. I do. I don’t believe in one who cares who wins the hockey game, or one who necessarily mucks around constantly in human affairs. One could get mad I suppose if one thought G-d was like that as I could choose to think well instead of providing this sudden burst of social courage, that ultimately provided me with the community I needed to get through my crisis wouldn’t it have been simpler just to skip the crisis?

I’m tired and worn out and far from well and the outcome of said crisis since new ones keep coming up is far from certain. I should probably have a strong preference for a G-d who just lightened up a bit on the amount of horrible things that happened. I haven’t decided how much G-d even does choose to  control these days or what governs the why and the when. I suppose I will never know so the best I can do is come up with a position that seems most likely one day. A position probably that will keep changing. I do know on our end we have to actually be open to letting G-d do what he can and being grateful for what he has done, which we cannot do if we fail to recognize His hand in the totally mundane yet life sustaining aspects of our life.

All my life I have tried to do what I thought G-d wanted of me but I think I often failed to let G-d help me because those angels in human form have been so hard for me to cope with. I’ve been insufficiently grateful during all those years when I saw myself as too rational and above seeing the miracles in the entirely mundane. We don’t know how things will end. I guess we never do but however things end here there will have been growth. Painful, scary, perilous growth which still has to be better than stagnation. Even for a person with a very strong preference for things staying the same.