In the past months human issues seemed the main concern. The ability for an employee of the government to ignore me so entirely and when that had the logical consequence of poor care it was not the service provider she did anything too. That I guess would be work.
In order to be one of the perhaps not so lucky few to even have services through CLBC despite an IQ over 80 you adaptive functioning scores need to be pretty awful. Mine were more awful than they needed to be and it does kind of suck to have the education to know what that means. To wonder if anyone at CLBC does when the laughable task of replacing your service provider is yours.
While it’s true this would involve slightly higher skills like this in activities of daily living if your adaptive functioning scores suck your very ability to stay alive without help is doubtful. When I got the test results I worried they would be used to push for a group home placement.
You never think that finally getting services for your autism will have so little to do with autism or you.
In a program where way more people with Fetal Alcohol Effects qualified than autism I cannot compete on subjective measurements of disability. I mean I had been a CLBC contractor and knew my facilitator was voicing disability discrimination that of course they screen individual service providers for but apparently not the high level “help”.
I am a more hopeful person than I get credit for but we still have issues from that fall in July that the only thing my facilitator did was stall my doctor and then claim my hours determination came from that assessment.
I had several things tested and sure now ensuring they only got the adaptive living scales would make sense but I am accused of a life long history of cheating downwards on IQ tests.
I had taken the WAIS twice ever. At 18 the excitement of the tester on day one made me throttle things a bit on day 2 as I did not know how they scales work and that this would not alter things much. I do really suck worse at performance but I was 18 and my usual self and trapped in a psych hospital and the last thing I wanted was to get anyone excited.
I had never taken it again. What’s more I told people about my interest in 120. Optimal for success as smarter is too different from others but to have an edge and still be in the range of others is it. The testing environment was noisy and I did not want to do it. If you grow up with a disability the ways you get tested and observed vary but you loathing of it all which just seems to prove this is not in fact your planet is real.
Magnified in the years between 18 and that fateful day by being in classes which used in class experiments to show the limits of the human brain. Again my brain was not human although the prof. had anecdotes for each odd result.
A savant skill so extreme the years of avoiding anything that could show you had one, well it was a work study in the worst department of all to be an outlier in the area of savant skills. The fuss and attention were something I had to repeat the lyrics to “I am a Rock” to be distant enough and then the expectation that I would want to use something which came with no guarantees for those desperate grad students which I did not built..
For the purposes of the program my IQ is irrelevant but if that phrase has an effect on someone who , well I am amazed she can hold a professional job so of course I seem less disabled than others but I wonder if she is confused about my motivation as there was none. When I couldn’t hear the first question of a test I didn’t want to take I just went slower.
I didn’t attempt to hide that there were some scales that interested me as that is noted. I wanted to see if years of computer gaming had improved my spatial skills and while not helped by poor visual ones they had improved and one other.
If my doctor or the psychologist had asked other staff which I needed them to do as aiming for a number I wound up getting exactly only prevents the impulse if it is clear the test is useless for you.
IQ doesn’t alter how disabled I am. It often makes me get stuck in fights of thought that perhaps if I were less intellectually able wouldn’t happen. It is lonely too. It threatens the insecure who viewed me all wrong. Not as a person with multiple disabilities who can’t call strangers , whose ability to speak flees or does other things under stress and on and on the list goes.
Still I am me. Which means I protested something that I should not have but then I would not be me. I was very much on top of her apology for the visually “developmentally delayed” being in the literature. If you question why she is apologizing and know the ideology that she is not matching well subjectively I am scary.
It’s not the first time someone with power of life or death – lets not be confused that hours are very much a matter of live or die – has said something so awful early on that my protest of it has played out badly. I defended addicts as real people to the clinician of another program. The decision to combine all intensive support likely broke a program that was effective but of the four teams this one had room because she signed off on all 40 people potentially living in a squat. Then there was a fire and as legal competence is rare in their clients none of those people were able to choose on their own. Real people were the good people who got the place and despite 40 times 375 (housing allowance still at 1970 rates but hey ! ) which would have got perhaps an overnight person to patrol without denting the money much it was exactly this that real people like the owners or well if it was your decision they had their fall person. Expected to make a sound decision for people deemed unable to she didn’t and people died or were hurt. Not many but 1 is too many and the whole way of lowering their main client group to less than even real upset me.
It isn’t my issue but all people are real and it’s hard to know how many people work in human services who see the populations they serve not as people who need some help to get by whether that is legal and addiction related or autism and well the many things that don’t happen without help.
Eventually you lose hope. I was there as it had become a hard commute all the way to the bathroom or to get the dog out. One I had to rest fast or fall over from. The effect of living off oatmeal and granola and trying to make it last as if you can’t make it 10 m without resting making it further where you have to cope with noise and sound and light…
It is not like science ever said if you ignore someone with autism their problems go away other than in the worst case scenario where they do indeed go away.
I don’t know for sure it was subjective versus objective disability that is a reason why I am stuck with 11 hours less than it took to serve me before. I’ve never officially had more than 5 and I was getting 16 hours because someone thought that was a work around for my facilitator.
The hitch of course is if you need that many no one will take you on with 5 hours. If you could harness the abilities you don’t have on those same objective skills and somehow got someone to interview the list of things you need support with is impossible and they do not have to take you.
I am a fan of paradox most of the time but this kind of one where something is expected that is by definition not possible and it is government … hmm lack of oversight? Attracting people who want pay and benefits more than to help people I do not know but finding anyone at CLBC that knows they ask the impossible and who are willing to view the whole she has ignored me for over two years now as an actual problem hasn’t been possible.
My landlord is raising the rent and my place was deemed an occupational health and safety hazard but despite the nightmare of dust filled insulation through which rats rained and electric boxes partially open to the rain the truth is no one really cares.
Home nursing could think to forbid people from coming. I think that was more from outdoors as there was smoke in the air again but the next step where a vulnerable human lives here is not thought. I am simply left.
I had mentally begun to prepare to die as any way I wouldn’t seemed impossible. It is the season where being in between the birthday of my dog and his dogaversary I normally talk to him about this oddness of leaving his home and litter to form a pack because he is a dog. I point out stars names for dogs and constellations and other silly thing people who have a smart dog and rarely see anyone will do.
This year I cry a lot. Less now . I apologized that if I died he died seemed a hard thing to work around and as it got harder to breath and to move far without resting it was not that I am so disposable in a society that believes it has a social safety net it was that he should suffer too.
This entire time he was the only one anyone from CLBC was interested in with the whole he had to be abused nonsense. Still the day would come where I would sob to my dog my sorrow not that he was abused but that grounds to take him existed.
Yesterday I saw the first human I knew since the Yom Kippur evening service. She brought some groceries which she has done at times before but it had been a long time to see no one and that was good.
Of course there was the advantage of a better diet than what we were living on. That helped my stamina a bit when I ate it. The dog spent a lot of time dreaming of chicken.
Still the thing that hasn’t made me hope as no one has been able to make a dent in CLBC so far but which at least made me feel I wasn’t utterly alone some hard to name feeling from that lingers.
There’s a market across the street. Much of what it sells is beyond my price range but I do buy milk there as the price for a brand that does not use “Big Dairy” is comparable to regular stores. There was an incident in July where 3 brands came under recall due to milk from the same source and while I never lived on a farm for longer than 2 months my teen years were spent in an area with little industry outside of tourist season and people clinging to farms. Some will always exist as people will lose money to put towards the farm that great-great- grandfather founded but dairy had made a temporary lifesaving measure then of becoming one coop. It was temporary but the image of all the things that go wrong with agriculture or other things like forestry that I care so much about have their routes in what I passed on the way to school.
Principles cost more per litre and I have heard the argument that being poor is a reason to not have them but it is the poor who are harmed when principles stop mattering to too many or the once not poor are made poor.
Principles are why I speak up when someone says something horrible and don’t pause to go “Hey your entire life is very much up to them so pretend you are oblivious’. I mean I never hear my brain saying time out before I dive in in a way that will alienate and my words never get stuck when I am about to say something moral but of low utility to myself.
The days I lay with the dog far better at meeting his needs than my own I stopped feeling real. It’s dangerous when all things social and in the community are hard to just not see anyone and not have any support to go do things.
For weeks I have wanted to go deal with something I once would have found intolerable. My tablet has issues. Look for my rant about that one day or not. My tablet is in the things I typically have with my whether I use it or not. It’s kind of a weird thing to take shopping as I don’t expect they can fix it where I am going and I got a good model last time which is too much now.
In my head I thought I would be able to go to where you can get some and well I do like that store. When the salesperson is busy I help people make better decisions about technology and I am always careful when the inevitable whisper comes about to get it there or a bigger retailer to point out the price matching rules. It is always a long wait as it feels like someone is forever testing a 9 dollar stylus over a 14 dollar one. Still it’s a wait among electronics. More comprehensible than people by far.
It’s close to a grocery store which I thought okay you get that far and buy that you might carry on although they do sell some forms of food where I planned to go. In my mind I think I had realized official support was fading and I was and doing something like this would help.
Only not managing to break me in the gets stuck kind of way but trying to get into bed for 6 days is a record and well medication and food for me just won’t happen. The weird bit looking back is the dog was taken out and then I somehow returned to some useless position. I thought I need to stop but I can’t sit for long without pain and there is no where else . Day after day. That my left leg was often hanging down made for pain when I tried to get it back in.
The fundamental problem with people actually understanding how additionally disabling this kind of long-term stress is for me is that if anyone was here to see I would do better. It’s the many hours I hate to admit that went to something like that . Better for others than the 3 day email but for my body it just stressed the broken bits.
There is little point in writing about the risks and happenings of this fairly invisible person if people only take away they are glad not to be me.
The person who came with a variety of food was a person who remembered I have needs and I exist and well her choice to show up with food was tangible proof that I am not entirely alone.
I managed to get milk today as that is how support works. You tell the dog you think you might be able to make it across the street for milk while chicken and cucumbers and humus lines your surprised stomach. That this was your best window in months. This remembering that however disconnected the govt. employee is from my disabled reality someone cares.
I know there are people who care further away but they are inevitably so distressed by my reality that while it is one worthy of distress if they are someone who you see as in need of protection from some elements of it. Like those who believe it’s easy to right a wrong that you know no one wants to fix, or family with health issues and those closest to those with the other health issues and that doesn’t leave anyone.
Love is sometimes having to say you prefer someone stay close to familiar specialists. My non-facilitator shouldn’t get a two for one bonus on killing with neglect which given how nothing she has done or not done is an issue for anyone if someone shouldn’t be stressed the rock like person she is as far as her not really having a clue who I am and never having tried to find out is the kind of stress middle-aged relatives need to do with out.
The price is then being reliant on not strangers but the community here which the whole not being able to sit has made a dent in our being an active member so the number of people who routinely think of me is way down.
I drift in time without any thing to properly anchor it and can’t get used to the new schedules for services. I miss the simplicity of being sure there was one as Shabbat was a consistent deliverer of a window of relief from being me. It still happens but a person who spent 6 days failing to get into bed might not be up to much for it.
I had trouble keeping Rosh Ha’shanah in my brain for long enough to act on it. A friend just thought I was skipping again. That I take some days as not optional short of something dire has come up before. I am more traditional than most of my congregation but that right is part of the ideology of Reform . I can be.
It is hard when you feel a govt. employee is killing you without even thinking of you much to not wonder how it comes to this. To exist at all seems too miraculous and well death by govt. employee under achievement something one would work into a British Columbia themed Dungeons and Dragons. Roll 6. Luck. Your confused govt. worker thinks he works for the Queens Printer and based on the stack of manuscripts he was napping on his underachieving won’t hurt you. Roll 11…. Oh no. By qualifying for support you always needed your life may be forfeit. Roll 18 Someone comes by with food that remind you will your life may still be in the hands of someone disinterested in helping you are not alone. (Sure in the game it would be a rope or something but the one game I played to the end of DND was mostly about my bosom. A female showing up for the games club did the Dungeon Master in…. )
If this is just a break from apologizing to the dog then it is still a break. One does have to choose to be grateful even if thus far the immovable nature of my facilitator has been a constant. It’s easier for the dog. Foods that have a smell thrilled him and while he licks the tears from my face he registers my distress but not that he is part of the worry.
I used to just worry that his life was blighted by my stress and sadness when the first 3 years of his life were so good. I kind of miss that being the pressing reason I wished for something else for him..
Right now we have rallied a bit from all 4 food groups ( I don’t typically pull that off but we do usually manage okay on a diet where peanut butter is a staple ) My sister-in-law is a vegetableaholic so with my luck the cucumber will be contested but houmous is mostly made from one.
I could have gone to dinner and I spent 49 hours trying to reply so 2 people remembered me I just am that hopeless and I feel like people would doubt that kind of thing even though I am honest as even to me it seems a weird torture when one task you can’t get out of bleeds into a new one.
That some protein and other foods and more importantly a person remembered I am out here and came, well for a few days things will not run smoothly. Still today we did get milk bought and as across the street seems like a distance nebula many days we will take the miracles we do get. I had begun to fear I was over my limit for a life.
The monster I enjoy being versus the randomly less than human by so many people I officially deal with.
My wonderful dog who on this day had as a pressing matter how too get the tv on. He snores and hogs the remote (well the tv doesn’t work in my room now so there dog… he has to hog Netflix instead) qualities I thought I stayed single to avoid. In any case that was a better day when he did not have happy chicken dreams because life had been derailed for some time.