just talking

hi everyone,
didnt really write much here lately. been reading about mercury chelation and want to be dong that for daughter soon. have been researching lots and am sure that soon will be able to start. (soon is like in a few months lol).

we are all sick today. started to be sick on the weekend and since then we all have gotten sick. it is only the flu and not too terrible.
am quite happy that we are not getting hit with it as hard as many others. mine driver fromthe health centre said that he was sick for 2 weeks and it was so bad he couldnt sleep except sitting yup in a recliner. good thing that is not like us, we dont have a recliner.


last week there was an assessment for me. it was at some developmental services. because the other assessment from kingston says that what am was "consistent with aspergers syndrome" then perhaps that is why no services like the support worker that had in kingston are given outhere.
so, after getting all upset last month, and writing to geneva centre for autism in toronto about what has happened with moving here and then writing to the member of parliament for our area shelly martel. she send mine email to the developmental services and instead of being onthe waiting list from august last yr until perhaps next june-august before an assessment woudl be do they changed teh date and assessed mineself last week.
that was fast. it went horrible.
tried to be so good, so hard. tried to speak well, and not pick at skin, or eat lips, or chew cheeks, and partially succeeded only. but at least did not wring mine hands or bang the head if had done that would have run away. was there two hours and the interview was video taped. that was very scary.
now am really upset because half of the stuff that wanted to say couldnt somehow get it out.
like for example, the man asked, "how do your characteristics affect your daily life"... you know what said to that???? (guess you have no idea what did say.. opps)this is what did say:
"well, i cant advocate for the kids always when they need things, and cant go to the grocery store alone because get so overwhelmed by the changes in there that get stuck re-organizing the shelves for hours, and sometimes get kicked out of the store"

aaacckkk!!!!! that was only one little part of how it affects mine life....
now what..?... how can one go back and change that? it is impossible. last night made a long list of things that are affected in mine life.
so decided to try to find the email address of the doctor who will be reviewing the video. found it, but after sending him this last night at 1Am it came back and was undeliverable. aaaccckk!!! now what?
well, the name of the man who did the interview was calle dben green so this is the letter that had written about how these characteristics affect mine daily life. worked so hard on this email and made sure that it was re-read over 4 times so that all the grammar was well formed with proper pronouns etc. and that it sounded like an intelligent person wrote it because am thinking am intelligent. and now the email is undeliverable.... am so so frustrated today.. been pulling out the hairs again...
aaacckk!!
here goes:


when speaking to ben green was not at all able to communicate what am able to in writing. the words seem to fall off the edge of this mind, and therefore am scrambling to retrieve them, rearrange them back in order and finally to send them out for his mind to process. it is not like writing.... writing is how the words flow freely through the fingertips (perhaps am neurologically connected incorrectly and the mouth is merely a tool for sensing the environment rather then a communication tool? what would be that? mouth in hand disease?
these are the questions that had the most difficulty with:

how do these characteristics affect daily living?
had said about the grocery store and not being able to advocate for the children.

here are additions which had hoped was able to catch before they fell.

* these characteristics have affected my life from as long as am able to remember living until this moment.

* have never yet been able to understand how to be with people, how to make conversation.

* have difficulty understanding people, and why they do not like me, only know that they think am wierd. they have called me 'retard' although that is not correct, (am not intellectually deficient) "wierd", a "geek", a "wus", "brain dead", "bizarre", "failure", they have spat upon me as a child in the playgrounds when have tried to get them to come and count things, been chased across the country as a 'run-away' by even the other run aways, even the 'throw-away children' threw me away (thus retreated into the bush and lived like a hermit, like an animal. this list could fill the pages of a book the list of ways that have been shunned by people of all types...in childhood in the family, in the wandering years out in the society, and finally in my adulthood years.

* am living like a hermit. have been living that way since have lost all the support services that used to have. and have been literally never leaving the home unless have to see a doctor since oct. 2001. ever since the counsellor from SSACK took me and the kids away from here-sudbury, (she said that we had to come with her to kingston because people wouldnt 'understand' why she was always coming to my home over the nights and she would have her job taken away from her... well that happened anyways once the kingston employer found out that she had taken us away from our home and brought us to her city for her pleasures). in kingston had an advocate from the kingston district association of community living, and she was helping to set up things for our better life. a long time ago lived in supportive housing and was feeling like life was going to blossom there. but now, for the last 10 yrs almost it has been falling down a long corridor of isolation, confusion, and often am struggling to engage in the world outside of the books which keeps me company.

* often loose out on services such as all the nursing care and homemaker that helped us to be able to live reasonably well in kingston. this is because am too nervous to answer the telephone often, or am scared to open the door to a new worker that had never seen before, or if they tried to change the time they came, then hide in the closet for hours caressing the trusted books that brings relief. these problems were averted finally when the support worker woudl call the CCAC explaining to them what was happening and how important it was for them to always send the same person, and tocome at the same time, and to not expect an answer on the telephone and tonot call. here in sudbury, it only took a month for me to loose all those services, and ofcourse the sudbury district association for community living has not returned a call i had placed to them asking for help in august.. perhaps am impatient? perhaps need to wait longer? perhaps am stressed out about them not sending a new replacement for catherine gibson the advocate from kingston prematurely? but it is getting harder and harder to live without the supports that had. have lost the nursing services too. in kingston they had a VON nurse come to help me and she woudl make the appointments for doctors when was sick. one spring was sick from april until june and needed antibiotics for what turned out to be a systemic infection by the time went. only went after the nurse said that it was critical that a doctor see me. she called the doctor, called the volunteer who gave the ride and then helped me to be ready to go when the volunteer came. have lost also the advocate for help with the children to get their needs met. it took 4 yrs of my daughter not gaining any weight (from age 5 until even this moment she is the same weight, 47 lbs) until the MD who assessed us in kingston at ongwanada-dr. cynthia forster-gibson to say that daughter needed a bone age xray for her failure to grow.. and her baby teeth not falling out.

*dr. cynthia forster-gibson said that i was consistent with aspergers syndrome but that is not good enough to get services here was told from the YWCA service co-ordination. consistent is not the same as saying i AM. that is why when ben green asked if anyone had diagnosed me with aspergers i said no.

* i cannot talk to strangers for any reason, not even the neighbour who lives on the same property here, and we live out on penache lake with no other neighbours only they foxes, bears who went to sleep, deer, two moose, partridge and all the fish we can eat.

* i have no friends or family here. only friend i have is brenda and she feels badly for me and says that she would like it if i could live near her so that she could help.. she lives in north bay.

* i get stuck thinking about something for days, and when that happens i donot eat, sleep well, andoften forget to drink water much too. this has been happening lately, since the interview last week and decided today that would write this letter. it has taken 13 hours now to be able to focus to write and say these things, having practiced it in my head for a few hours pacing the floor carrying the books. it is like a way to make sure i am still standing on the floor. otherwise loose all contact with the feet and feel lost in space.

* i am living under mine potential. perhaps have the potential to do something postive for humanity, for others who also suffer. but this way that am living, (do you call this living? i call it choking in my own bile) is not helping me to live a meaningful and fullfilling life.

* i do not have any hope anymore for any kind of place where i could participate in society in any way. in kingston, kdacl lady told me of a place where i could go to an art studio where painting is encouraged and she said my "obsession" (it is not an obsessin, i do not like that word, it has been a sharp sword too often) with painting things could be a way to function in society if i attended the H'Art studio where others like me also go. dr. cynthia forster-gibson referred me to the 'aspergers' group and there was putting some hope also.. to learn more about ways to live better.. to maybe even get to know a friend.. we could maybe read the books together, woudl that not be a nice thing to do with a friend? i hope so. now hope has faded away. the abuse by rosa that social worker took away those hopes too. because it was her we had to flee from and leave kingston and all the things that perhaps would have continued to help me to live again.. for i am sure that there was a time when i did live.... if not any other time then at least before coming to this world where am imprisoned by this mind/body combination which brings me so much sadness.

* my health needs are not met, and sometimes am stuck in the home unable to get up or move much because of the pain and muscle weakness and there is no nurse who comes anymore and no homemaker to help with personal care (she helped to make sure that ihad a bath at least once a week), laundry and meal preperation.

* i cannot take public transportation because everytime i try i get lost, there are too many noises, and people and smells...or i have to run away. when i run away, i end up trying to go as far as i can. then i really am lost.

* i am terrified of things that others will laugh at me for. that is what eldon the kids dad would do. he would beat me in the past because i could not get in the bathtub when there was a hair in it. i am terrified of those. and when ever i get in the tub, the hairs keep falling off the head and tangle up in the fingers and these bring fears that they will tangle themselves around me and perhaps will choke you even, or plug up the tub drain nd leave a tub full of water where the animals could fall into and drown.

* jasper our dog almost bled to death because me could not call the vet and explain the situation better. did save his life, but caused him to get gangrene in his foot. had tied a tensor bandage around his bleeding foot, so tight it cut off the blood from coming but the vet said it had also cut off his circulation and at first vet said he was supposed to get his leg amputated because the circulation was not coming back. he severed one tendon, one vein, and one artery in that foot. the vet said it was a miracle he survived and almost bled to death. that was december 1st 2001 and now he still has an open sore on his foot from where the gangrene was worst. because of my 'problem' jasper almost lost his life. it was a vet we never seen before, only a vet in kingston we seen before. and the volunteer took me there.. she first brought you to the parking lot and then next time we went in to look around then we brought jasper to get his shots. that is good because now he wont get rabies. instead i had to go with eldon and he was so mad at me all that trip and then i was so worried about jasper and what i had done to him that could not live well for the whole month fo december being so stressed.

* am chronically depressed.. would you not be if you had no quality of life? i do not believe i have depression as a clinical problem because when things are predictable, the same all the time, a nice routine, and am getting good food (not eating out of a box of cookies, or cereal of whatever i can just automatically pop in my mouth) with the help of someone taking me shopping and helping me prepare things that are good, and when you have some things to do in society in a way that is manageable (like at the suportive housing we used to go strawberry picking trip, there was a coffe hour every week in the building and the support workers there helped get me out the door togo, and talked to other residents there, and there was a christmas dinner and a thanksgiving dinner too. they were all scheduled and inteh common room in the building and this was at woodward apartments operated by north bay community housing initiatives. then the depression was not there... and i even went to the library with my support worker there. and shopping, and strawberry picking too that was the best. when those volunteers came in kingston there was also no depression. life was getting to be a nice routine then too. because the homemaker and VON problems were fixed and there was the hope tht the group was starting in sept. and there was also the H'art studio where i was just about to start to visit and get to go inside it soon too. had only visited the streeet and walked aroudn teh outside of it so far.

* i get bullied by the kids dad sometimes still even when he is sober now and not a drunk drug addict anymore. like this december he borrowed $300 from me, i didnt want to give it, because that was all money that had gotten from social services as a "coomunity start-up" funding for making our home work well and get teh oil tank filled too. but dont know how to say no to people. it was not knowing how to say no that caused me to get abused by rosa the social worker. then since january until now he has gotten another $245 from me. wish me could keep mine own money. but am good with money. pay all the bills and on time.

* i have been taken advantage of sexually by rosa and others in the past. far away in the past. but only one recent is rosa. this makes me feel things. the things i feel is that am bad and that am a failure.

* ihave sensory problems. sensory system is mixed up. sometimes when am suposed to be hearing something, it comes out as colours in the eyes. andsometimes everything is too loud or too soft or too hard or too bright or not bright enough or too scratchy or too gentle which feels like a slithering. these things often keep me isolated becuse crowds, busses,class rooms, waiting rooms, etc. can be much too much and then need to run away, then sometimes miss an appointment and have missed 2 times an appointment with a nephrologist (sp? a kidney doc) that was referred to in 1999 and now am too scared to ask again once again for that referral to a doctor that i might not ever make it to due to the anxiety.

* i fear people in mass numbers. that means more then 2 or 3 in one place. there comes an anxiety upon this mind that swells like the red river in the spring... flooding the system so quickly that running away is the only option.

* i rock and bang my head when am needing to think really hard, or when am needing to get rid of all the days slime upon me. do not feel pain then, but sometimes later when there is a bump on the head on the next day i feel pain. and the head throbs.

* i usually try so hard to be as good as possible when am out in public that it takes days to recover from the experiece. try to be not noticeable and have fine tuned the need to engage in my "wierdness" that it feels like had been working very hard all day long. i end up exhausted but also very anxious but feel the relief once have the book and paints, and can paint or rock, or watch water, or the flakes in the air, or the sound of my blood rushing through the ears.. it is like a little river that thrusts itself throughout mine head and it is calming. am glad you have blood in mine ears moving around it is a good relief.

* i am not sure if any more examples are necessary to show what mine life is like. this only touches my life. not my kids life. did give an example of how they are affected also to ben green. said about the advocate. but they also miss out on other things because they were born to me. but since the question was not about them, but about me, i dono if any other reference to them is needed except to show that by offering one example for both them and mineself there is the display of the relationship of equality. they are equally affected as am i.


please explain. explain to them how you fit into the aspergers syndrome and so i did. i did like i was told. i wrote it down. did you get that writing?
did you get the report from the doctors in kingston? did i do good? was it well written. i took lots of time to write it. it is the book=me. perhaps you are the doctor who will review the video interview and tell me that there is hope again. that these 'problems' called mine life will get better again. currently am living on the promise that once the children are old enough to take care of themselves, maybe at age 30 then i can go back to where i came from, and be with paul again. there in mine Creators safety i will be relieved of this burden called living... that is the only reason that sometimes am able to go on.. knowing that the day of restoration of mine soul/body/mind into its original pure essence will bring relief.
i do not want to live like this way. i want to have hope for something better. for there is no tonic so strong, as the hope for something better in the future. i need that tonic again. i do not want to live life waiting the days until i will be called back by mine Creator.


that is all that i think i could really say to anser that question better that ben green asked.


that was the email...
is it better then saying only the two things that had said?
what about getting it to them... what now????
aacckkk!

LG-somewhat distressed