yesterday’s update: computer, skin spots, and Robbie

I tried to write a whole post last night and was tryingf to send when the internet on this computer decided to stop working. I’m on this old IBM computer from when I was in college my last year and my HP decided to just crash. My dad’s school where he’s the facilities manager like gets rid of their laptops every year. It was when everyone was changing to windows seven so I guess since they’re rich they figured they’d just buy all new computers rather than update like normal people. So this computer has xp and jaws on it. It’s a pritty solid computer though. I’ve had no problems with it except it’s very slow. It can’t handle things like going on, and there isn’t space to put stuff like aaudio books on it but I’m making it work. So to cover yesterday. Couldn’t find Mr. J. He was in his office after lunch with the big boss of the place so even staff doesn’t really want to bother them when that’s going on. Jess and I were waiting and Stephanie hapened by. She diid apologize for missing friday’s meeting. She said “it got crazy” I wish she would have e-mailed like sooner or had someone tell me this was going on. Those are Edith type things and I know I need to keep reminding myself she’s not Edith. And other PRSCS might not have even cared at all. She seemed a bit more connected than last time I guess. Trying to give her credit for something. She did actually try to have the wrantie people do their call back thing after the stuff was submited as it said to. I thought she hadn’t bothered. But she did and they never did call back. But she didn’t madly pursue it or give them her work cell. Which Edith or Nakia would have done but at least she tried. She did seem sorry that she couldn’t do it, she especially said Jonathan wished she had been able to. I can only imagine about that. Last night mom did send me the phone number of someone from the place square trade that they can call. Don’t ask me how she got ahold of anyone as Stephanie claimed there’s no way to call costumer service but whatever. Hopefully this will help if I can ever get back online to send the number to Jonathan.
He still has the braillenote and battery that the electrician hopefully is working on. I’m not so worried about that as I’m using the braille sense ok. Other than having to reset the thing to get it to turn on which I still am not sure is best for the computer or whatever works the thing. I’m more concerned right now about geting a working computer. The toshiba technically can operate but it’s the thing with the cord being so bad in that power port because the pin has gotten all out of line because of the piece of plastic breaking. Plus it needs a new battery. Robbie got me one for very cheap on amazon and I tried to go online and look and that’s when I found out this old thing couldn’t handle that site.
In other news my spots are doing ok. Nurse said that all Dr. BK sha would say is to use the hydrocortozone and wait to see what happened. Last night we were planning on going to see Karen the director of nursing. But today they seem better though as of this writing just discovered a new itchy spot on my right arm. They literally come out of nowhere like that. I’m tired of geting asked the same questions: do I take a bath with soap and water? LOL this is actually a fair question as so many here sadly don’t. And probably have skin issues among other things as a result. They ask if I have any alergies which I don’t. I kind of think it’s stress related. Or could be part of my egxyma just like a new form of it. Though my mom who’s had it all her life, and I’ve had it all mine so she’s seen my skin, said it didn’t look like it. But you never know. Like I pointed out I never had twitching shoulders until one random day it just happened. And now it’s part of my anxiety issue. So yeah. Mary the CNA who put our bug worries to rest pointed out too you can get a reaction to something randomly any time in your life so that could be it. So yeah I’m a bit less worried though we still might stop by Karen as Jess has to talk with them anyway about something.
Lastly Robbie is doing ok. Sadly the really good CNA, the one who makes Dr. apointments suddenly died this weekend. So yeah it’s pritty bad for many reasons one being he was like soo good with geting stuff like Dr. apointments and things made and really advocating. I’m hoping this doesn’t put off his surgery or screw it up. But we’ll see. Well that’s all for now. Hoping as I typed this up in notepad once the net decides to connect I can send it easily.

may be off and on major issues

Hi everyone,

So super quick. May not be on the computer mostly e-mail for awhile. My Toshiba has to have the cord held in place to stay pluged in now which Jess very nicely is doing!

It came to this last time this issue happened I was very upset when it became clear a few weeks back it was getting this bad and he was like it’ll be fine we’ll have the HP fixed soon. Well the HP still hasn’t been sent out due totm beig slow t get this warantie submitted and then like not callng anne to talk with them about it. I know Jonathan is doing huge over the top favors with helping me with this stuff which is why I can’t get mad at him but the stress is killing me.

So basically as this one is becoming worse and worse all I have left is a very old IBM computer. I can go on facebook easily enough but can’t seem to have any desktop e-mail program working right now. Stuff was I thought but haven’t used it in awhile. So yeah will have to access gmail site or something.

It could be stress related or a random reaction but I have random itchy spots all over my body like bug bites but there are no bugs at all. I have exygma but these aren’t consistent with that appearance. So I’m freaking out because I do with anything medical. Sent her pictures of them, taken at wal mart LOL and new she’d know cause she knows my skin. She said she’d never seen anything like it on me./ So yeah just started up a couple days ago and mostly today. So she called the Dr. and put hydrocortozone on it for now.

So yeah don’ know what to tell ya except I’m really freaking out with everything. Not having a PRSC I feel comfortable talking to is rough. Stephanie didn’t even show up Friday for our meeting. At first I was extremely happy not to get another uselsss you need to use the cane lecture. But I suppose she should have shown up and I should be able to tell her any of the things on my mind but she didn’t and I wouldn’t have and so yeah.

Will let you know how things go. Hopefully get an e-mail program set up on the old computer. Took me an hour to post that book review last night from the site itself.

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Book Review: Will Mummy be coming back for me? Shane Dunphy

Hi everyone as a side note this is written on my very old computer using the website not the usual e-mail to post so if there are typing mistakes that’s why
I just finished reading another amazing memoir by childcare worker Shane Dunphy. He works in the social care system in Ireland. He’s done work over the years as a child social worker, teacher in special needs school and sheltered workshop, residential worker and journalist. I highly recommend his books to be used as required reading for any class to do with psychology, social work, ethics ETC. The books provide detailed and compelling cases of children in all kinds of crisis and their families. Shane’s interactions are show in depth not only how he works with the clients but his own inner thoughts and feelings. There’s a lot of internal process around personal involvement self-care and boundaries in the therapy relationship
In this particular book Shane comes face to face with the child he worked with at his first job as a residential key worker. He was just out of college and felt very optomistic about the job. He would be working with five year old Jason. Who had been through many placements before arriving at this residential home. He was physically agressive didn’t speak, wasn’t reliably toilet trained and placements previously had not worked out for these reasons. It was known he’d suffered horible abuse but the details were not known.
Shane was to be Jason’s key worker, that is take on a primary caregiving role with him in the home and advocating outside of it. Through a mix of straightforward gentle compassion, creativity and patience Shane begins to chip away at the behavioral walls that protect Jason from the outside world. The clear details of this unique relationship are heartwarming to see.
While this story of his first job and relationship with such a tough kid is being told, alongside it is his interactions with Jason in the present. Jason has g gone through every program imagined until he’s ended up in juvinele detention for sexual and physical asault. He begs Shane to help. Shane wrestles with the history of their relationship while he tries to salvage some hope for himself and Jason that he could get his life back on track. In the process many coleagues question the wisdom of his involvement in the case. They’re worried about him emotionally and how this is impacting him. As the two stories merge we see the events that put an abrupt ending to such a special relationship both in the past and terribly in the present. This pushes Shane even further into a personal emotional territory of his own guilt though the circumstances are clearly not his fault.
This book doesn’t have a happy ending. Shane’s books are real life stories and so are not crafted with a view for a certain outcome just telling the facts as well as posible. This work is extremely painful often more than it is rewarding. I felt the ending was appropriate and probably reflects so many people’s journey in the care system whether foster parent social worker ETC. You want to think that patience and love can be eenough to turn around such a damaged little person. But so often physical brain damage from trauma family crisis and other circumstances get in the way. The lesson for Shane is in needing to face whatever it is that emotionally pulls him to a place of geting so personally involved in these cases and feeling drained and helpless by the end. These are hard truths many in the field will relate to and so rich for posible discussion and personal reflection. I hope that shane one day goes to a compitent therapist to sort out these issues and if he continues his work to be more self-aware in the future. I believe that I’ve read all his books to date. I look forward to reading new ones.

Initial call to Gateway supportive living was amazing!

Hi everyone,

So the big event of the day. Jess and I came up with the most comprehensive list of questions possible about what we wanted to know. Kim the head person and we talked for an hour! She happily answered every single question in an energetic and genuine way.

Basically it’s like Friedman Place but brand new. Will open next month. So the building is new they’re hiring all these new staff and are in the up beat we’re starting out stage!

They have 105 apartments. Some are single rooms and some are double. If Jess and I go we’d get a double.

They have three meals in the dining room but you can have food in your little kitchen and I imagine a microwave as we had one at FP.

They have the dining room lots of activity rooms downstairs an outdoor patio and everything.

She said since it’s new that residents would have a huge part in planning all the different activities and things. They will have an exercise room and I advocated for a trampoleen with handles on it for safety she said she’d look into it but kinda laughed too.

You can’t have a cat or dog. Though she said therapy dogs would be brought in, she has a puppy that she hopes to train as a therapy dog. She was like yeah ok, I guess cats need some love too even though my daughter’s cat is an evil kitty! She did say a small pet in a cage could be acceptable with discussion. Jess wants a ferrit of course!

The disabilities so far that she mentioned were things like blindness, deaf, stroke, brain injury, CP, autism heart disease ETC.

On the mental illness she said that on paper the primary diagnosis had to be your physical disability and your psych issues need to be managed outside the facility. But that they would refer you to places and keep tabs on it as much as they can. I’m sure should we go forward Jonathan will be contacting them and talking to them about my issues. I particularly want to know how much is “being in and out of the hospital” like if I or Jess did get hospitalized could we still live there? So much to talk about there and so hard as it brings back memories of FP and having to hide my illness and having staff not get it and not being open with other residents and just yeah. But she studied sociology and seemed to understand about things. If we went, and even if we don’t, I’d suggest that groups be started at least one for residents that do have mental health issues so we can at least feel like we’re not alone living there with this problem. It does sound like within the limits of the facility they’ll do what they can.

What else? Weekly housekeeping, help with daily living activities like bathing laundry ETC. But everything is individualized and they’re very much about empowering people to do what they can and expand that as well as be there to assist.

One last amazing thing: We were talking about down the road going for a tour. I guess Peoria is like two hours away. She said she’d be willing to drive us the trip up and back I was like OMG!

It made me excited. It feels like a place where I can have more independence than I have here, a nicer cleaner building with residents who don’t have quite so huge behavioral problems. To have more money out of my check a month would be awesome! And just new oppurtunities I wouldn’t get being here meeting new people and all.

But I’m still remembering how bad I got and don’t want to go back there again. I feel emotionally so safe at Albany. Even though I hardly reach out to the caseworkers I’m really really glad they’re there and I feel safe knowing they are there. Knowing that they know how to coordinate apointments even if they mess it up LOL, get your doctor on the phone quickly and just know the ins and outs of mental illness. Staff not having that knowledge scares me. So it’s a lot to process. And we wouldn’t be doing anything til a year from now at least. Jess needs to finish up her schooling, and I think we both need to continue to get as stable as possible. Though there’s a real unknown about mental illness. It’s like with any physical illness. One of my good friends has diabetes and she does everything right and it’s just killing her. It’s one huge illness after the other and she’s doing all she can. I’m just worried that it could get to the point that I need the stability and knowledge that only a place like Albany can offer. This place saved my life. Jonathan has guided me through everything and I know he’ll be there every step of the way to guide Jess and I. But it’s still extremely terrifying to consider leaving even if it’s to an assistive living place.

If people want more information about gateway please let me know. Ya know I’ll just leave the phone number


Also because the place is brand new they need suggestions for activities/ support groups and other things at the facility to engage in. So if you were theoretically gonna live at a place like this what activitys/ groups would you want to have them have?

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Robbie doing well geting more support than you’d think finding the good in the bad

Robbie is in an interesting place right now. And I think it sends a message about trying to find the good in hard situations and making the most of it.

And please know I’m not saying this from an super unrealistic overly positive mindset. Because what I wrote sounded like something irritating someone would say to a depressed person to try and make them have a new perspective. I’m not saying that.

I’m saying that when all this hit we both felt extremely devastated and angry. That the so called professionals neglected his healthcare to the point that these illnesses, that could have easily been prevented or have been much more mild, grew to such an extent that he’ll never see again. I guess it would be different if he were on his own trying to manage things and they got out of hand and he didn’t know the signs to look for ETC. But he wasn’t he was under the care of nursing staff, supposedly seeing a medical doctor at least once a month hospitalizations supposedly followed up on in theory ETC. That none of this happened is inexcuseable.

So when I found out about his ucomming surgery I was very anxious for him being in an environment where I doubted people would care one bit, I mean they didn’t call the ambulance for goodness sake! I wanted to like sneak him into my closet at alban and have nurses secretly look after him. I wanted to move him out as soon as possible.

We were talking last night in e-mail about all this. And he says I don’t mean to sound like I’m saying shove off, but I do have lots of support here! I was a hundred ten million percent thrilled to hear this. When he told me about residents offering to get things at the store for him, doing mobility lessons, helping him with braille it made me feel all warm and fuzzy inside. When I heard about the good CNAS behind the scenes working around the stupid director’s crazy system that demands he handle doing his laundry when this is imposible due to CP I was thrilled. The former director of nursing is truly loving and will do the best for him. I believe should he choose to he can make it work there. And that of course the surgery and recovery will be a long while. And long term I feel comfortable with him there assuming he has the same level of support from the residents and the few good staff they have left.

It made me sad though as though I had an awesome time at FP and was envolved in everything under the sun, there was a part of me the mental illness part that never felt at home there. I couldn’t even try to open up because I got the reactions of I can’t believe you’re depressed or anxious or you really need medication? I kept so much to myself and could stay on top of it for awhile but it just became too much. It really made me wish that I didn’t have mental illness because if I didn’t I think I would have had a more secure place within the resident community without this baggage I had to hide.

But about seeing the good in the bad. It’s a process. We didn’t go looking for the good or having someone [ put us down for being infuriated and deeply betrayed. The good just happened in the form of residents giving mobility advice, braille advice chocolate a hug randomly ETC. And that director of nursing who let him cry in her office and said how sorry she was. And of course the bad, the people who did this to him are still there and still a huge issue. But being able to cling to the good offsets that though not as much as it should. He’s in a good middle ground place right now, he’s getting as much support within the facility as possible at this point. He’s extremely intelligent in advocating for him self and plans to work around any stupid demands the staff throw at him in favor of the appearance everything is about money model that’s so strongly being upheld. Putting that under fire will have to come later but for now I’m just happy he’s in a solid safe place. And I never thought there would be such thing as a safe place in that situation but he found it.

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good day looking into other supportive living options

Hi everyone,

So today was good. Was in a good mood. Hung out chillaxing all day.

Jess and I have two supportive living facilities, in the same category as Friedman, that we could possibly move to.

Because I suck at spelling am gonna pause a moment to bring up the sites of these places. I can spell them just not the towns they’re in LOL

Ok I’m back

The first most promising place is called gateway at river city. No it’s not in river city! It’s in Peoria IL about two hours from here. I believe it just opened this year sometime so they’re brand new. In some ways it would be good going to a brand new place as everyone is all, upbeat and hey! We’re brand new yay! Kinda attitude and everything new and fresh. But then also they might not have gotten into a flow yet around what their organization is about their team not having the years of experience to feel comfortable in their skin ETC. Tried to explain this to Jess but not sure she got it. It’s Sammy’s complex intellectual/ emotional way of thinking that goes over a lot of people’s heads I guess

Here’s the site it isn’t much

As I was saying about eager to get going, Jess e-mailed them like two weeks ago and they contacted us twice since then once each week. We’re not like running out the door right at this moment obviously. This would probably be like a year or so away. But they called again yesterday so we wrote down our questions and decided to call them back. Get an intro perspective and hopefully be able to somehow visit. Not sure how we’d get there and hope that maybe they’d let us stay the night so we don’t have to get there and back in one day. But anyway called today and the intake staff were out probably for a very important conference. So will call tomorrow.

It says for both places that it’s for ages 22 to 64 with a variety of disabilities. I’m hoping they’ll accept blind people. I believe they accept psychiatric diagnosis provided it can be managed with outside services. As they’re just starting up though I’m hoping they’ll have a flexible attitude. I know someone with mental illness my age who lives in Peoria and know that if needed there are Albany licensed type places in case we needed it. And have heard they have good mental health centers

The second places is edens supportive living in Champaign which is in central IL.

Just to see what it’s about or perhaps actually wanting to move there a bunch of residents from friedman toured the edens places there’s one in Chicago one out someplace else and then this one. The one in Chicago is really bad in terms of very unfriendly staff and not really providing much in the way of help. But the residents I guess were all very friendly.

So hearing several residents saying all this about that one didn’t make me think anything about this other one. But Jess wants to look into it because it’s near where her best friend lives and when I asked Robbie he heard actual really good things about it. So I am curious.

However Central IL kinda reminds me of western MA. Like this Champaign town is like a college town like say Amherst and then you go out from there and the towns get smaller and smaller until you’re in VT. That’s kinda what the area reminds me of. Just a feeling I have. And again we would have to take all the ownership for getting our own psych services and maintaining our mental illness care on our own. I feel less confident about this in what sounds like a smaller town but we’ll just wait and see.

So yeah I’m really conflicted as I post ten million times on here. I love Albany for saving my life for continuing to support me however I am. For the residents mentally able to connect even if we’re not best friends, in spite of their symptoms and for the general acceptance even in conflict that we’re all dealing with something. Since I’ve been here three years my blindness is no longer this weird thing. You have others here with physical disabilities, on walkers canes and then there’s Kat and jo. So having extra issues isn’t a big deal to residents or most of the staff. I have good relationships with many many staff who do spoil me I admit it! With the whole breakfast upstairs thing.

At the same time I’d love to get more than $30 out of my SSI check. Though my parents give me extra money enough for what I need for basic stuff like shopping at Walmart and ordering out, I’d love to have more my check for my own use especially as stuff like having the money to go to support groups, voice lessons go out to volunteer ETC. It would be nice to be in a different community meet new and different people make new connections. Expand a little while still having the safety net I need. And the same is true for Jess

But we both go through huge back and forth feelings about whether to do this or not. Especially me. Because I’ve been there. In an SLF where by the stupid not up to date policies, psychiatric disabilities are considered in some other unsupported category than any other disability. And there don’t seem to be services in the SLF level that reflect the challenges of having both. Which looks like living in a place where both staff and residents see depression as having a bad day. Or anxiety as something you can talk yourself out of. They have no clue about it. Or about what services you need when you might need to go to the hospital need extra support med adjustments ETC. They instinctively most of the time, know that stuff here we don’t need to worry. I just know the terrible feeling of being alone with handling a huge part of my daily life and not being able to connect around it with others and therefore not be able to share my whole self. And the more I feel like that the more I work really hard to appear normal because I’m around people who are well not mentally ill. There isn’t that, being outwardly emotional quirky and even symptomatic is the norm, like it is here. And then that’s when I go towards having a breakdown. I don’t want to put myself in that position even if I were ready, it would still be a hard position to knowingly put myself in. To know that this place is supposed to care for my needs but there’s a whole huge part of me that they have no understanding of. That on some level they’re afraid of and if things get too bad, however they define that line I could be asked to leave. It’s very scary

At the moment there is no harm in talking about it. And visiting would be an adventure certainly. So that’s what I’ve been looking into. If anyone knows anything about these two places I’d appreciate hearing from you.

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the rest of my day talk with Jonathan, Switched at birth project general irritation and restlessness

So other than looking into friedman and how Robbie is doing I’ve done some other things.

Having not talked with him since Friday I snagged Mr. J at lunch. Got to actually sit on the bench and have a good 15 minute chat which is unheard of for most people. But anyway. Progress: The tech guy fixing the mpower needed to order some parts to do the saderwing and so he’ll continue to check in with him. Seems like a solid reliable worker. The fact that he’s remotely interested still shocks me.

He will take over the HP warantie stuff. At first he was like I’ll talk to stephanie. I thought this meant try to give her some pointers and then send her back to it which I firmly stated would not work I think he realizes this and said he’d take it from there once he updated her.

I then decided to take the chance and said I thought Stephanie was just weird. Like she’s come into my life and assummed she knows what I need to work on, what my past around these issues has been like and in spite of this I must press forward anyway.

Like she lectured me for an hour about using the cane more in a building and population where while yes technically blind people should have their canes at all times, it’s often not practical. People won’t move aside, elavators are so crammed that the cane or backpack even feels like one extra extension of me. She wanted me to go take paratransit by myself in a particular situation, the dentists where had I I would have been standing alone on the street for an hour. I think she thinks I’m too much on Jess which isn’t the case. Our relationship is extremely complex to grasp and some never do. It takes a special person like Edith or Nakia or Jonathan to take the time to get it. She doesn’t have that open quality of witnessing of just being with me as Edith did where I felt I could say anything and she wouldn’t freak out or lecture.

Jonathan said this is a goal in itself me being assertive while I’m pretty calm and not in the heat of emotion. I just feel resigned now. If she wants to go on and on about whatever and if I have to make consessions I’ll do whatever small thing just to get her out of my hair. I’ve had plenty of experiences of caseworkers where this is the way you get through I’m willing to go ahead with it.

He said our problem was that she was giving me apples when I wanted oranges. Metaphorically. I’ve been thinking about it and it’s more like I’m not sure I want fruit at all I’m certainly tired of it from meals LoL! Or for that matter I’m not sure I want to even be in the store.

Deep down I feel she and Jonathan are probably right. That I need to be more independen and that I have a good comfort zone here. Not necessarily that my life is “too easy” and that I’ll “never be that mentally ill as I was back then,” I just feel that were I to move to another facility with more open hallways and less zoned out people I’d use the cane just fine.

One reason I’m not so firm on wanting to tell her what I want is I’m honestly not sure what I want. So these goals are as good as any for now I guess. I have no money to go out and do things like any kinda workshop or support group so the traveling by myself is limited as all of our travel is stuff we do together like shopping and the school.

But again I have no better ideas. Besides missing as I said Edith’s ability to read me and intuitively know how to sit and let me process. And by the end of a conversation I can feel better about something by talking it out with her because I felt free to say anything. I didn’t feel this free overnight but there wasn’t the huge struggle there is now or with any other chosen for me PRC because I chose her in the first place.

All this is just depressing. I think I’d have more goals and be more motivated if I were able to live someplace else. Not on my own, Jess and I couldn’t handle that even with support which I know would be sketchy due to the supposedly human service system that’s quite uncaring and tripping over itself. We have Edens to look into and another supportive living place. I’m very concerned actually terrified about not living in the safety of Albany care or another psych place should something happen. Particularly for Jess as things literally seem to spring from thin air. At the same time I feel I’d have more freedom of mobility at a facility where people really got it about being physically able to have the space clear and things like that. And I’d have more money to then do some more things. But the downside is I and Jess would have to fully manage our mental health and I believe physical healthcare. So it’s really a toss up. At least in IL. Then there’s the scarier idea of venturing to another state. There happens to be an assisted living program for psychiatric diagnosed people in NC. But I’m really really not about to fly to another state and settle at a program just because it’s the only one in the country. I learned that lesson. Therefore I’m generally restless on life. And since I have no better ideas will just let this lady do her thing. Fill out her forms and play along. Until I decide if I even want fruit apples or oranges or even if I want to go shopping.

My last downside of the day. Robert and I have been madly working on getting switched at birth audio described. Continuing to try our hardest to get people in the positions of power, at netlicks in particular to be able to give license for audio describers who are ready and willing to work with the show. The problem is we can’t seem to find the right people. And it kills me how some shows are so easily described. But even more frustrating I post to several blindness related groups and I’m totally ignored. Which me wonder if Robert and I are the only two crazy people that want this and that’s depressing.

So that’s about all. For now.

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update on Robbie/ the future of friedman place

Hi everyone,

So wanted to give my now regular update on how Robbie is doing.

He was finally able to speak to the Dr. he had seen in 2015. They had a nice long phone conversation. He told him in no uncertain terms that he does not have an auto immune disorder! So to stop looking it up! I’m sure he mentioned somewhere in there about his research obsessed best friend who wouldn’t let this go. So that’s a huge relief because honestly with that kind of thing he’d have a host of other problems and from what I’ve read and heard about it it just plain wears your body down.

This Dr. is pretty good. He admitted he gave Robbie the wrong diagnosis. That he had made the mistake of thinking it was an immune system thing, saying that his immune system had attacked his eye randomly. When actually there was something wrong with his eye in the first place. He’s not sure which caused which but Robbie has this narrow angle glaucoma, and this iritis inflamed iris and both are rare I guess. So this all was going on since 2015 and it started that time he went to the hospital. The Dr. did say that he had wanted Robbie to follow up and of course Friedman Place’s nursing department failed to do that.

I like this doctor too. I mean for a Dr. to actually admit he’s wrong? OMG! He also fully admitted that he didn’t specialize in this and actually recommended several times the same dr. that Robbie was put with in the first place most recently. Who we lovingly call the smart ass or jerk doctor or bitch doctor. Until he actually acts nicer that’s what we’re gonna tell him. Someone who responds “ Nah” when one asks if they’ll get their sight back after losing it overnight, deserves that name!

I’m very angry this happened. I tend to take on the emotions of others I know that. And I’msure he has more than enough anger to spare. I’m angrybecause he’s had enough trauma to cope with in his life. I know he’ll be writing a book about all that one day. Long story short he’s been through abuse, homelessness, losing a loved one to suicide and who knows what else. And he’s built an amazing life for himself. He’s never had vision problems hardly been to the doctor in his life. Auto immune disorder or not his immune system is still quite impressive. And now he’s hit with this. He’s relied so much on his good eye obviously like anyone would. The fact that he has to go through yet this other thing, this adjustment and everything it just kills me.

I cling to blaming friedman because I truly believe that had they acted even a bit sooner he could have come out of this and been able to gain some vision back. After all his vision cleared up after the hospitalization and there was a huge gap of time things looked fine. Of course things were just getting worse behind the scenes. I just keep going back to the fact this is a place for the blind. Where you would think they’d especially care of course about all of one’s health but particularly your eyes. Have frequent vision asesments and eye check ups for everyone there. And if there was even a little bitty something wrong with someone’s eyes they’d be right on the case. And, if someone was losing their sight like Robert has that theywould have all the services right there to help. Like mobility that would accomidate him having lost that vision, braille classes ETC. Well it turns out none of that is true. And that really kills me. I keep going back to that the nurse a few weeks back wouldn’t even call the ambulance. And that he had to himself. I told someone this and they’re like o good he did the right thing! Well yeah don’t you get it though he shouldn’t have had to!

I was very furious with their lack of concern and knlowedge around psychiatric issues given they had many residents struggling with such. But for them to be this clueless and negelectful in their care of him around his vision? Like what they’re supposed to specialize in? It’s stunning it shows what a poor organization they really are.

We both have a friend who lives there who’s an older guy. He’s done all sorts of work in hospitals and he knows a lot about finance. He has a very objective view of the world emotions consciously don’t factor in for him though there’s a lot going on unconsciously. Anyway if there’s anyone you would ask about the bhusiness side of things, or just ask in general he’ll end up telling you the business side.

So I wrote and asked him generally where he saw Friedman Place going. He said due to the budget crisis they’re preparing for the worst. Even though he admits after going through budget documents that anyone has a right to view he claimed that things were actually pretty good before the new guy came along. He said this guy is stripping down the services to the minimum to save money apparently. And that only when things have shifted politically I.E changes in government the new president ETC, will we see what happens. He predicts years from now Friedman will be explanding as the mental health facilities are doing. Have several different floors and units for different things ETC

As it stands right now it seems like Alexander wants to have as little supportive services as possible and to have everything be very mechanical and cold towards the residents and how staff work with them. This just isn’t a financial change it’s changing the whole climate and personality of the place and the staff have no say in it. That’s why many of the true pro resident people walked out or didn’t put up a fuss when asked to leave they couldn’t take the attitude.

It truly saddens and infuriates me to see where friedman place has gone since I left. I am pretty sure that despite unorganization in other areas that if the old staff were there this wouldn’t be happening with Robbie’s eye. Or it wouldn’t be so bad. Even the former director of nursing came in to do a shift and was very eager to help him get his records from the hospital in an accessible format. I just know that back then they would have jumped on it. They still would have lacked the specialist in different areas but the medical side I feel would have been better managed.

I don’t see the improvements ouir friend is predicting unless there’s a full scale stratigy plan in the works as there are for psych facilities. Unless there’s that kind of thing everything is speculation. Asar as Iee it I seriously have no idea what kind of residents Alexander is looking for to come to fp and live there. Certainly not anyone who needs any kind of care even minimal as they’re cutting CNAS to the bare bones. Iknow he’s trying to put money into this transitional apartment thing. I think he thinks he’ll get a lot of people in and out therefore making even more money and being cost effective in helping the most people. But he doesn’t realize the obstacles blind people have in living on their own in the community even if they have all the life skills, things like getting into an apartment getting any kinda job ETC can be next to imposible for many reasons. So this program Ieel would not work the way

He thinks it will. Really as far as I know he hasn’t gotten any input from residents on exactly what they want to have happen. He goes through the motions of it having all these meetings ETC but it’s just going through the motions. He has his agenda which keeps changing and makes no sense and he’ll press on with it regardless

So in the end I honestly see friedman closing down, or at least not being called supportive living anymore. I just don’t know ya know? IMean they are one of two places for long term supportive living for the blind. The wayit’s set up it’s supposed to be a place where you can have your independence but get support around daily life things that would not be possible to have in other circumstances. Thus appealing to a lot of blind people who feel they need that support and on a long term basis. Nt having this at all I’m not sure what will happen. Maybe they’ll just keep creating these blind training centers transition apartments where really you’re under the gun to learn all you can knowing that you’ll be doing it alone once you’re out. It’s supposed to be a solid community atmosphere that people can trust for as long as needed. And for all the issues present before the director change this was a value of the program.

Iknow for certain I will not be recommending this place to a single person for the foreseeable future. IGuess I can say that I’m glad I enjoyed the year and a half I had there. AD I’d consider going back if they expressed even a slight interest around psych ises. But now that’s the least of our problems. The whole resident care values are just going down the drain. Either something changes or the whole thing’s gonna go downhill period.

So I”ll keep you updated on how things are going and my thoughts in the process.

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rflecting on lack of long-term residences for people with disabilities

This is a topic I come back to again and again. That there’s such a lack of residential facilities that catter to those under 65. Yet elderly persons have so many choices in this regard. It seems like other people with legitamete disabilities having the same needs but being at the wrong age are left with very few options. Especially if they want something specific to their disability.

For example, so far as I know there are only two long term residential facilities for blind adults specifically. They’re both in IL weirdly enough. No other state has adopted the idea that for many people aspects of a supportive living model, like knowing there will be food on the table, help coordinating medical care, having a nice apartment to live in are huge concerns due to the vulnerability the disability brings to their life. In a place that has enough structure and services to fill these needs which would be very difficult to meet or imposible otherwise, yet allow flexibility in one’s day and independence otherwise seem such a good middle ground for so many.

Obveously many organizations don’t realize this.

I also think the word residential facility has a bad name because people here stories of such places being truly terrible or like living in jail. Often places do have to adhere to state regulations which can be hard to break out of the box when needed. Some people like Jonathan manage to do this while still sticking to the rules, he might just bend them a little! That said every single place is different. A lot has to do with funding and what staff are where.

I wish there could be a more open dialogue about this so that the idea can be expanded to more holistic services and a true community feel not an institution. I do feel like I’m part of a community here, a quirky frustrating one but still. I don’t feelinstituionalized or like I’m being ordered around. I feel safe and comfortable and in the midst of overwhelming emotions this is an important ankor.

So you know my take on all this if you’ve read anything from my blog since moving toFriedman place and then Albany. My thoughts on this are picking up seed, or I geuss maybe substance as myself and a couple of friends want to find new residential living options. This would not take place for myself and my roommate until at least a year from now. For my other friend it might be faster but again not like tomorrow or something. Just feeling the ever present frustration of there being so few options for the under 65 population who have a variety of disabilities. There are a couple options in IL and then there’s venturing out to other states which would be tricky and not something I want to think about. Thinking about being in a smaller place would be nice and to have people with less quirky frustrating behaviors. That said I’m very afraid of leaving the safe shelter of Albany where I literally got my life back. And especially afraid of no other more suitable mental health focused one in IL but we’ll have to see. In these places we would be getting more than $30 a month which in itself would be a plus. If anyone happens to know anything that would fit with my/my friends profiles: blind, physically disabled morbid obsedy, blind, mental illness please let me know!

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exploring dreamwidth blogging journaling site ,

So this weekend was very relaxing.

My friend has a blog on a site called dream width. Not sure where they found it. Anyway he was bugging me about how accessible it is and he wants his blog posted there because it’s more private and can’t be tracked by a search engine. I didn’t know google like randomly tracked blogs but ok.

So today finally created an account just to respond to his blog. It’s very interesting I searched for different things like mental illness and disabilitys and there are others sharing interests but many many people use it to post and share pictures meems, graphic designed photoshop stuff ETC. And a lot of the people seem weird like saying they consider themselves nonhuman and part of the dragon world or something I’m not kidding someone said this! So I spent some time looking into it.

Maybe I’ll meet someone interesting on there I don’t know.

Here’s the link:

Would love to connect with other people with disabilities and mental illness also for those that are interested a lot of fan fiction is posted on this site of various types.

It’s also a good spot for someone just starting blogging and wanting a private place to do so or to only have your posts read by a few select people.

We’ll see what this site is like as I get to know it a little. Though I’m not gonna be in touch with the dragon people!

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