Shattered Hopes

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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The Supports We Don’t Expect

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

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.