Book review: Overheard in a dream by Torey Hayden

Hi everyone,

I recently finished reading a fiction novel by Torey Hayden called Overheard in a dream. Torey Hayden is well known for her memoirs about teaching special education and one about working in a child psychiatric unit. She’s written another novel that I have not read. People criticize her novels and believe her teaching memoirs are better. However if you look at the book by itself out of the box of her normal writing it’s quite fascinating and multi-layered

James is a child psychiatrist recently relocated from New York to the plaines of South Dakota. While still adjusting to the complete change of pace, he meets Laura Daton and her family. Nine year old Conor is said to be severely autistic. His family doctor reffered him to James and his mom Laura is desperate for answers. Conor has spent a year at a special school for autistic children with no results. He is totally withdrawn. He wears wieres with bits of tin foil stuck on them around his waist and carries a stuffed cat which needs to be on him at all times. He uses the cat as a scanner in his environment. He communicates through mechanical noises meowing and choed words and phraises. Everything envolves patterns for him and he is easily over stimulated can’t sleep and throws terrible tantrums. His mother can’t seem to do anything right she feels.

Rather than prescribe a set course of therapy Jame’s theraputic is a purely client centered one. Though he did spend many years working at a psychoanalytic practice where everything is seen through strict interpretations, he now veers less from that. His favorite phraise is “in here you decide.” He believes that only when the client feels they’re in control of the sessions, what they play, how they reveal issues and how long this takes do real changes happen.

As part of the therapy process James likes to meet with all members of the family individually for a few sessions and then ideally as a whole family. Laura Daton feels a challenge to James. She is a famous author in the area so he would figure her to be very dull and intellectually above others. What he finds is a desperate mother on the one hand, on the other a wounded misunderstood woman bursting with a story she knows that others see as crazy but that she has to tell in order for James to understand her relationship with her son.

Going along with his you decide model, James allows Laura to tell her story. Sotrytelling figures as the basis for how Laura operates in the world. A core belief for her is that there is no one truth that you measure reality against. That reality is flexible that if you precieve something it’s real, just because the other person doesn’t doesn’t make it any less real. This confusing philosophy is at the core of how she relates to others and herself.

Laura discussesher childhood as friendless through no want of seeking out friends. Indeed starting at the age of seven she had great company. A young woman named Torgon. Torgon is from a very archaic society defined by a rigid system of casts, religion and laws something out of the Viking erra I guess. (this was what an online reviewer said. I know nothing about history so yeah!)

In any case, Torgone was chose to be the Holy Bena, basically a type of prestiss the highest person within the religion that communicates with their God Dour. She and the Holy Seer are connected with the great spiritual powers that govorn their society. Torgon was born a worker’s child so at the lowest of the low. The fact that she was chosen for this role is pretty amazing.

Her world is comprised of forest, villages and “the high Holy Place” a series of high clifs and rock formations above the forest. All this seems pretty unheard of for a seven year old to come up with. But it came to her fully formed, the society use of language, forest ETC. And Laura was emediately struck by it all. She wasn’t afraid of it she was drawn into it. All of her passion, all of who she felt she was was wrapped up in this inner world. Though she states many times she knows that she “made up Torgon” there seems always an undercurrent where she may believe that Torgon is real that Torgon came to her.

So much of laura’s early life was about trying to navigate the outer world of deep family issues, absent father, sexual abuse in foster care, reuniting with emotionally absent father new stepmom ETC; with the inticing and comforting inner world of Torgon.

Meanwhile while this story is unfolding James is working with Conor. Over the course of therapy James sees Conor as less and less autistic as he sees beyond the outside behaviors and forms a relationship with him without biases around what is wrong but lets him set the pace and tone of the sessions. He walks along side him as he discovers a sense of self, encounters strong overwhelming emotions, and learns to regulate. Conor is extremely intelligent and emotionally sensitive and James believes more and more that a severe trauma occurred around the time Conor was two that started all this.

With Laura storytelling it’s hard to figure this out as she refuses to talk about her relationship with her husband Alan, or her relationship with Conor unitl she gets this story out and understood by James. Jame’s most reliable source of information is Alan. A down to earth cowboy type who tries to shed light on the situation. What Alan points to first is Laura’s lying. It’s like the truth is anything Laura decides it is and this puts them in really bad situations. More and more James sees this in Laura’s story how she lies so easily and always justifies it with there is no one version of reality. But James doesn’t know how to confront this.

The book progresses interweaving the stories of Conor in therapy, James working with Laura, Torgon’s story as it overlays on Laura’s life, and Jame’s own life and family. I feel the writing is very well done and as it’s all stories within stories it makes sense to the situation at hand.

How things come together in the end really has to do with Jame’s lack of solid boundaries as a therapist and how he and his family get envolved with Conors. Very interesting to discuss from a psychological point of view. So I totally recommend the book. I would love to hear others views on it.

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Jonathan decided to try and replace my braillenote battery!

Hi everyone,

So my last update about the braillenote battery was that we were gonna head over to the battery store in the next town and have them do it. Well I had been looking online, awhile back and remembered this article basically saying that the battery that Humanware insists you have to have them replace for #$260 is actually rechargeable double a batteries!

That article is below

So we figured, since one way or another I’m gonna have to replace this battery anyway, and Mr. J has never ever messed up anything he’s worked on for me, I decided to give it a shot. Usually when he does his working on my tech stuff I’m not able to sit and watch him work. Yesterday as it was Sunday and we had an uninterrupted hour I got to watch him unscrew gently pull stuff and even have me gently touch stuff. It was a touch tour of the braillenote

If you read the article it talks about how you would with a screw driver take apart the area around the battery, like to expose it and then how the battery is wrapped up and configured. And it’s pretty much as was described. Jonathan was like they could easily use electrical tape to wrap this thing LOL! It’s literally the tape you use to wrap gauze on someone’s wounds. (I think I remember it from my SI days)

And indeed it was six rechargeable aa batteries. Sautered together. It clearly showed which batterys connect to which wires not rocket science. He was a little uncomfortable with the sautering part so he’s gonna give one of the electricians that works for here a call and either send them a picture of it or have them come over and do it. I was extremely skeptical that someone who works for the facility would have any kinda inkling to come here for something like this. But Jonathan said no because Jonathan does them favors putting stuff together for them at times! Which is really confusing cause they’re electricians right?

But anyway I’m like soo interested to see how this goes. Worst case he says he knows how to wrap up the battery and get it back in if needed. He also said the battery shop wouldn’t be able to do this for some reason he felt. So it seems like we’re on a good path with this plan. And of course he’s like totally enjoying taking apart this new piece of technology!

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Our PRSC positions are full

Hi everyone,

So officially our case manager positions are full. Took awhile. With a lot of ups and downs. And since I’m not staff Basically not Jonathan or Monica, I couldn’t be clued in to everything. But I was totally respected and valued for the skills I do have. I was and am a bit disappointed that out of the huge pile of resumes I got, none of the new people are actually among them. One was but sadly he only lasted one day! This rarely happens but it does happen and I guess is good better to have him leave then than a few months later which also happens too.

So in terms of the new people we have a guy who walked in and got hired and it’s his first job. Lucky guy! He seems very genuine and eager to learn which is what this position, as it stands right now is about. We have a woman who I guess Jonathan really liked because he interviewed her awhile back like I guess a month or two it must have been. She had to give this long notice for her caregiving job so yeah. She’s here. I think I shocked her by my benign but I guess unnerving from a resident, questions about where she went to school what her degree was how she liked the job ETC ETC. Once I told her I was inherently nosey she seemed a bit more at ease. I don’t know will have to break her into Sammy’s world I think LOL!

Then this woman just started today who has her masters in criminal justice. Has done a lot of court related, police related stuff. Worked with a lot of different populations. Seemed really smart. Haven’t met her yet but that’s what Mr. J said. I guess she was recommended by a former PRSC so that’s good.

I did ask a few times if I was honestly being helpful or just a big pain in the ass and he said I was very helpful. Because ifr he gets twenty resumes it’s only about four or five of them he’ll like enough to interview. But normally without the advertising I was doing it’s hard to find one or two people to begin with.

I am very sad Dalphne the music therapist won’t be joining us at the moment. I was like picturing her here already! But I think as this position transitions to one where masters level staff is the norm it will be more accessible pay wise to master’s level people. Obveously many are not gonna want to work an entry level job with their experience and education. The fact that we have like three masters people says a lot. So we’re getting there. It’s transitioning from one whole license to another which is no small thing.

I’m sad to not have my job anymore. At least now I won’t be so anxious when someone leaves (it depends on who it is of course there are many who better not leave for a good long time) because I can distract myself by helping get in applicants. So yeah will keep you posted on how the newbies are doing! Stephanie is doing really well as my PRSC. It’s kinda like Edith I go in to our weekly meetings not wanting to talk and end up talking for an hour. Because she’s so curious and really wants to understand what I’m talking about. So yeah like I said will keep you updated on life here. It is a comfort to know all the positions are filled because obviously it’s really hard on staff when they aren’t

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A good new friend passed away yesterday morning

Hi everyone,

I’m sad and still shocked as I write this. I’ve met a couple of awesome online friends these past few months. Amazing self-advocates and powerful figures in the disability community. One is Nai the blind ASL interpreter I posted about a while back.

She connected me to a woman named LaVonnya or Vaunie or Beautiful Unicorn.

Lavonya was quite a unique person. People who first meet her will have their attention caught by the fact that she’s blind, deaf and autistic. That there are a lot of everyday things she can’t manage on her own. That she uses an ipad to communicate rather than her voice.

Strangers don’t stop to listen to what it is she has to say which is so much about herself, her friends, and family. The adventures they have together, her love of singing and dancing and most of all unicorns!

She was 38 when she died. She had a 11 year old daughter who is also autistic and a wonderful boyfriend who is blind and autistic. She had many many online and in person friends and supporters. When I first met her I didn’t know all this. I learned about her daughter and was so incredibly happy that this family figured out a way to stay together and not have any outside agency like social services interfere in their lives. Lavonya was so happy to be able to live at home and parent her daughter, being autistic herself knowing at a deep level what her daughters needs were. She had such a creative way of seeing the world. It was hard for her to remember names of people so she assigned them colors. Same with the days of the week. She thinks in colors and pictures and for myself as a totally blind person this was often hard to relate to. Still I was and am incredibly impressed at the flexibility and creativity of the brain to make sense of the world when other pathways are blocked or damaged.

She had such a sense of humor about her life and challenges that came along the way. As well as being such a solid voice for those with disabilities especially autistic adults, parents, and children. A big mission of hers was helping others understand AAC. This is communication through means other than one’s voice (verbally) mostly technology devices, aps on ipads and other communication devices. She wanted to start up groups for AAC adults and children who use AAC.She wanted to professionally teach AAC to as many people as possible and to shatter the myth that nonverbapeople don’t have anything to say. In her heart touching videos she discusses this as well as every day life. Many were taken down and hoping they can be uploaded soon in order that I can post them here.

Another autistic advocate, Emma, wrote an article where she interviewed Lavonya about her life using AAC and being autistic. It gives a good glimplse into her personality and how she sees the world.

I found a good video about her talking about her strengths and educating others

Please watch this video and read the article. It only gives a small peek into Lavonya and her personality. I soo wish I could have been her friend for years and years, gotten the chance to meet her in person friends and especially her family. And to learn all I could about this amazing unicorn!

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hard day resident passed away and testing fire alarms

Hi everyone,

So in addition to the whole figuring out that the supportive living license won’t take anyone with psychiatric disabilities we had other major issues today

The worst being that a resident passed away. He was very old and needed a lot of physical care. To the point he couldn’t manage his toileting issues which could be quite frustrating to say the least for everyone. He went into the hospital last week for issues with breathing and was actually in the ICU. Why he wasn’t kept there and released home yesterday I don’t know. He’s a pretty argumentative guy and Jess thinks he was fighting to get out of the hospital so bad that they just let him go, not the whole reason but yeah.

So he either passed in his sleep or right when they called the code. So we had all the emergency people come. And leave with no one on a stretcher which was chilling. Then like forty minutes later the police and coornors person came. Of course everyone was tense with emotion breakfast was late for me, and meds and right as I was taking them they were rushing to clear the hallway so no one saw what was happening. They were gonna have us sit in the dayroom until everything calmed down but Karen director of nursing came by and let one person go so I asked if I could I was like in crying meltdown mode by that point. So yeah really sad. He was really in poor health though. We have a bunch of people like that that really need to go to skilled care. Which at least in that respect I believe skilled places have pretty integrated psychiatric services at least some of them.

Then they tested the fire alarms oh joy! At least we didn’t have to leave the room where the alarms would be louder. Still ugh stress. I was telling Jess I feel bad for kids at schools for the blind/ institutions where they have fire drills once a month.

So yeah that’s the run down of the day. Weird day.

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a matter of licensing when serving those with various disabilities in residential care

As I post about this subject obsessively, (people with multiple disabilities and residential services) feel free to skip this post if you’re tired or frustrated at hearing me repeat myself obsessively.

In my friend’s search for a possible new home he contacted the other facility specific for the blind which also happens to be in IL. The place is very small and cozy sounding. He got all his questions answered and for him I feel the place could be fine.

Because he’s one of my besties and knows that I’m always looking for something more lax than Albany in ways, yet still with the security of support, he told the person about me generally. . Unfortunately he’s not really familiar with the terms/ concepts around psychiatric disabilities but he tried his best! It would be like me trying to explain stuff around CP to someone as I have no idea on it.

And I know that were I to give my description I would have still gotten the same results.

Well I don’t know which was worse. The woman minimizing clinical depression by saying everyone gets depressed, but if it’s something “she can’t control and has dealt with her whole life she can’t be accepted here.”

She explained these were state guidelines/ licensing that as part of the supportive licensing those with a primary diagnosis of a psychiatric issue can’t be accepted.

Which would be fine. If the psychiatric residential programs didn’t have the same exact attitude towards those with other disabilities. I’m sure it’s in their licensing somewhere about additional disabilities not being able to be accomidated or something.

You can’t box in a person by their individual disability! It makes no sense. Both my blindness and mental illness are primary diagnosis. Some argue that if I weren’t blind I wouldn’t have mental illness but I’m not sure that’s true. I think I’d still have mental illness just wouldn’t have to deal with the aspects of having an additional disability, the attitudes of others, how I felt/ was perceived by my parents growing up on top of everything else going on that I was a blind child. And I probably would do ok in one of those apartment programs where you get little support. Then again I don’t know. Even if I could do all the stuff like cook and clean without the added pressure of learning to do this as a blind person, often my anxiety/ depression is such that I wouldn’t do this stuff even knowing how. Like I know how to take a shower obviously. But when really knocked down by my symptons won’t do it. So by that logic maybe the psychiatric issues are primary I dfon’t know.

What I do know is I hadn’t realized til today that this was an actual on paper license issue. Which explains the boxing in of different disabilities as they’re funded/ covered by different organizations. I read a passage in an old journal of mine from when I was just coming into Albany. It was my first self-injury episode that the staff found out about. So they were dealing with that. In the midst of this I overheard part of a conversation between a PRSC and a CAN basically saying they couldn’t handle having to help me get to the dining room (in a building with three hundred people) and that Jonathan had said give it a chance but they thought I should go somewhere else basically. I said something like oh great they’re on to me about self-injury/ all I want to do is be dead and now they’re gonna throw me out?

That’s really how I felt at that moment. I spent a good long time being so afraid that because of my blindness they would basically throw me out. And I know I’m lucky to have been accepted because only one other place came to even see me. Well two. One place had the woman who’s friends with Jonathan so that’s how I came to be here. The other place didn’t have internet LOL!

But seriously. That PRSC who made that comment is still here. And awhile back I’m not sure how we got talking about this but she said she doubted they’d accept anyone else with blindness because I was just a special case. I’m not sure if that’s true or not.

So it’s the same issue either side. You have that type of attitude from the psychiatric side. From the other disabilities/ blind facility side it’s either an outright no like was iven by the place my friend called today. And hey at least they were honest. Or a more passive well no, we really don’t have stuff for that, but you can come anyway. It’s people plain turning their back on the issue accepting the person probably for money and just pretending the issues aren’t as bad as they are. Where I was at is famous for that. There have been many many people who have gotten worse and worse because of their passive let’s just turn the other way approach. But at least they got in.

I don’t know which is worse and I don’t know why no one else, in power, seems to see the problem. I hope I never have to move anytime soon. And it’s really limiting access to services that I am more than qualified to get, on the blindness or psychiatric side equally. And that’s just wrong but no one cares enough to make any changes or to realize changes need to be made. And then you have people living in their own apartments trying to pass as not having mental illness or as having more sight than they do if visually impaired because they know they won’t get services otherwise.

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Book review: Zoe letting go by Nora Price

I just finished reading Zoe Letting go by Nora Price It’s a very “interesting, as in weird book.

Zoe is dropped off at an eating disorder center in MA. Which at first made me really happy because I’m from MA. I know it’s a fictional place but still. Sadly it’s not in the boston area! It said in a rural area so cut off from everyone to the point no one could run away. It’s a huge victorian style house. So Zoe is brought there having no idea why she is there. Rather then being furious, or outwardly expressing her feelings she just let’s the process push her along. She’s extremely observant noticing patterns around her and reading people well but all this is within her own mind and a lot of the conversations with the five other girls turn into confrontations. It’s hard for her to relate as the other girls are clearly anorexic, it takes her one full day to figure out this is a place for people with eating disorders! She doesn’t feel she is. What bothers her the most is not being able to talk with her best friend Elise. The program gives much room for free time, as the only activities there are eating large amounts of extremely healthy food, cooking, gardening, seeing an individual therapist and “group downtime.” Basically just hanging out. So when not engaged in these activities she spends a lot of time journaling her memories of her complicated friendship with Elise and writing letters. Letters that her therapist Alexandra promises she mails.

Alexandra is the only staff member with any substance. Devon cooks, angela makes a few announcements. Alexandra is a good therapist I feel in that she’s friendly and observant. The emotional work for Zoe does not involve an eating disorder, and I found it frustrating that this work happened at the tail end of her stay there and in such a short period of time like two days. For the rest of the book it was about telling her history with her friend. Alexandra wasn’t actively questioning her but rather letting her tell her story. She did have some anxiety attacks which I feel were a clue to her inner emotions and I wish these had been really used as openings for deep emotional work. It’s hard for me as a reader to believe that she came to terms with the main issue driving her depression and anxiety and integrated her feelings on it in two days. And spent four or five weeks eating cooking gardening, solving a clothing mystery and that’s about it.

I love reading books about teens or anyone in residential treatment/ psychiatric unit/ therapy because I want to see how well it’s portrayed. This however is not well portrayed. The treatment center itself is plain weird. And logistically there’s no way a person with an eating disorder could benefit by their form of treatment. They couldn’t physically ingest the amount and type of foods provided. People with such issues being left to their own devices in real life would lead to cutting, eating disorder behavior purging and other unsafe things. I would rather have the place at least be a realistic representation of treatment.

Actually I’d rather Zoe be in a general mental health program, or really this story could have taken place with her at home going to weekly therapy or group therapy. But have it be in a proper treatment rich environment where the unvaling of her issues could be steady throughout the book and get to the heart of things in a deeper way than can be done at the last chapters of the book. Oh and lastly, in case you want to cook some of the lovely food shown in this book Zoe takes down recepies in her journal! She hates the food how could you not, but she takes down legit recipies.

Let me know what you all think. Looking online I’m not the only one who thinks this way. But some love the book so yeah

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Slight med change and no Jonathan session today

Hi everyone,

Wanted to give a quick mental health update for this week. Over the past month or so I’ve been having trouble getting to sleep mostly. I’ve been on the same 25 MG dose of Benadryl for like two years

And the same night time dose of Ativan. Ativan being a benzo and me having such a good ability to not build a tolerance to meds too quickly at all I figured why not just raise the beandryl. I’m not a psychiatrist but I know my body and how meds affect me.

So I asked the evening nurse to call Dr. Fyazz and have her do the med change over the phone if possible. Because this is a nursing facility they can do this and I know Dr. Gil’s psych nurse would. So they did it I started with 50 mg of it since Wednesday I think. I feel like I’ve been sleeping better but maybe it’s too soon to tell and could be all in my head.

I was going to see her today a referral was put in by the evening nurse the same one who called her. But the woman in the Dr. office who makes and handles the list of patients who see the Dr. said I didn’t have to see her. That I had about a month or so ago and you generally see your psych doctor once every three months. They do insist on once a month for your medical doctor. Many feel it should be the other way around this being a psych facility and maybe after things have transitioned for awhile with the new license it will. I was surprised but not disappointed. It had been a very very small med change and something we could talk about when I do see her.

I was disappointed not to see Jonathan today. We hit it lucky the past few Fridays when I’ve come down at about three. He’s had some quiet time and we’ve had a good solid hour to meet. Unfrotunately today this didn’t happen. He was in administration talking with someone when we came down. And never came out. I wasn’t totally surprised. He hadn’t answered my confirmations about meeting, though that’s not necessarly a no, as sometimes he doesn’t even look at his texts or e-mails before the time itself. Like recently I surprised him by coming down at three he had time and actually said it was good that I just came down like I did because if I hadn’t we never would have meted. It’s such a weird arrangement for therapy but it works and even if it didn’t I really have no other options for therapy. There have beewn times where we hven’t met for over a month he’s been so busy and I’ve had to deal with it because it takes so long for me to really trust someone so we’re sort of stuck with each other in a good way.

I wanted to talk about tech stuff again. I wanted to see if the HP had come back yet so we could send it on it’s way to square trade the insurance place. He and my mom had e-mailed and I wanted to see if he got all the information he needed about the insurance. I wanted to talk about stuff with my family. My mom stressing out as usual and how that makes me kind of anxious. I also wanted to try to secretly pull as much information out of him as possible about the last two PRSCS that are coming. One is coming Monday he told me last week but he didn’t even remember her name at the time.

The other is still a mystery. There’s this one woman who sounds awesome. She’s a music therapist and worked in behavioral health for years. Done so many things just amazing. I swear I would just hire her. So I’m really hoping she gets the job. But to have anyone chosen from the applications I’ve collected and organized so well would be great. We almost got one guy but it didn’t work out. He left after one day LOL

Anyway that’s all for now. I’m in a pretty good mood. Didn’t see Stephanie this week. Was really tired on Tuesday since Jess and I went to her school. We both said we’d reschedule and then just didn’t. It’s so hard to do this with someone totally new. And it’s even harder in a way because she tries so hard to get to know me and she’s really intutitive and can pick up on how I’m feeling like when I don’t want to talk and stuff. It’s just so hard not having that history between us. I’m also kind of worried about getting attached to her and her leaving quickly. The department is trying to hire people who will stay longer term. As Edith did for two years. So yeah I don’t know. Basically there’s no way I could say anything bad about her because she’s doing everything clinically right. And I know at some point I need to really try to build a connection. It’s just so overwhelming. Something I wanted to talk about with Jonathan but it will have to wait til next week.

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Book review: Today I’m Alice by Alice Jamison

Hi everyone,

I’ve just finished reading a memoir called today I’m Alice. It’s about a woman with DID. It’s set in England so very interesting to note the differences between care in the US and in England. In terms of hospitalization therapy ETC

I have to say the book is extremely triggering. Alice grows up having nightmares of being sexually abused or burned. Has physical problems with her bladder and bowels and other physical issues. There is a lot of emotional abuse at home. She is constantly bothered by these memories and starts hearing voices as a teenager. She does see a psychiatrist for years but doesn’t confide anything. After leaving home she does have some good periods abroad but the voices follow her everywhere and she realizes she’s losing time and finds things out of place or new things she didn’t remember buying.

Throughout the book she does run into genuinely supportive people but also people that take advantage of her vulnerability such as people who draw her into doing drugs or abusive partners. She also tries to confront her father a couple of times with no positive results. Her mother does believe in the end that what happened was true and was over all supportive.

What stood out to me was the number of times her alters cut her/ tried to kill the boday. She was taken to a/e or the emergency department stitched up and more times than not sent home under the promise she won’t hurt herself again! It just didn’t seem right or like something that would happen in the US but you never know. Sadly at the time this was maybe the sixties, the hospital psych wards were a nightmare and little good came out of it except being over medicated.

The therapy she received was psychoanalytic, with one therapist she was helped to regress and was continually flooded with memories this increased her symptoms draswtically. Another therapist she saw for a rape and when she found out about the dissocation said she wasn’t able to handle it. Her last therapist had firmer boundaries. Though he still used regression he really focused on the alters cooperating rather than individual ones and this was helpful in some ways.

I’m not sure how I feel about the book. I admire anyone who had a horrific life like that and was able to tell their story. I wish Alice had received therapy as it can be done today with direct coping skills for trauma self-harm and DID. I also wish that hospitalizations were more helpful as they currently would be.

One thing I’d tell readers who have experienced any kind of abuse is that the book is extremely triggering in describing graphically flashbacks and abuse scenes throughout the book. I would be interested to hear a person with DID’s thoughts on the book.

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housing/ residential services for people with disabilities must be more inclusive

I could say this about all services for people with disabilities. But housing gets to me because well I’m a person with multiple disabilities seeking ideal services and I’m realizing there’s no such thing as even close to ideal. This takes some audience participation ready?

Google or use your favorite searching site. Type in “residential (or) housing services people with disabilities.”

Search the first couple pages.

If you found stuff where every site said “developmental disabilities.” Or “autism and developmental disabilities” you’ve basically seen it all. Even sites that say “people with disabilities.” You get all excited thinking it would be for any disability and then a paragraph down it says “developmental”

Ok next search. Type in “housing/ residential services for the blind.”

This is my favorite because I’ve been searching these terms literally for years. You’ll find two residential places for the blind. Two folks, in the whole US! Then you’ll find stuff about residential aspects of schools for the blind, or independent living centers with residential programs and that’s it.

I have to say I haven’t searched but it’s probably the same for the deaf. If not please correct me! That’s your homework LOL.

Lastly type in “residential/ housing services people with mental illness/ psychiatric”

You’ll find first a bunch of really interesting sounding/ looking private pay places. . With names like Healing center, Austin Rigs, Spirit of Geel. They’re ranch/ farm places believe it or not. For another post but am curious about such things.

Anyway keep scrolling. You’ll find a lot of community mental health center places describing residential services. A lot of it is for people who supposedly come out to your apartment and help you and then leave. The group homes even say this is for like, 15 people and you have to have a million hospitalizations to live here. Not really but ya know.

And again that’s it.

Are you exhausted and frustrating wondering about what happens to people with multiple disabilities, that don’t include developmental aspects? Yeah me too!

I honestly don’t know why this is. And I’m in no way dismissing that people with developmental disabilities need these services. I’m just scratching my head at why there are so many programs for that and almost nothing for anyone else. And why there seem to be the only multiple disability programs, for developmental and psychiatric. And even those are hard to find but there. If someone has developmental issues and psych issues they have a better chance of finding something that fits all their needs. Same with deaf mental health services though that number is way too small and from talking with an interpreter and other deaf friends it’s crazy that there isn’t more available.

If you’re blind and have mental illness. Have physical disabilities and mental illness, basically any other disability and mental illness as far as I can see you’re kinda screwed. You basically have to choose what issue you want/ need the most support with at the time. Offften places will tell you they’re more inclusive than they are. I moved all the way across the country being told that one of the places for the blind absolutely! Was fine with people with psych issues. In fact there were many residents with psych issues. They had a psychiatrist, psychologists social workers ETC. So I moved in. And while they were sure right there were residents with moderate to severe mh issues, the services were very lacking. They did have a psychiatrist. However he only saw people if they were put on his schedule each month. For example I saw the guy when I first moved in. I waited and waited til I found out about this “only if on the schedule thing” and that the nurses never got around to really looking at people on his caseload and seeing to it that you were seen. I didn’t see him til almost a year later! That is not med management.

The psychologists only came in to see medicare only people. Whicdh a lot of residents don’t have. The social worker was a very nice man. Blind himself, had a dog who was like an unifical therapy dog. Didn’t have a clue about severe mental illness. Not to sound arrogant but I probably taught him everything he knows regarding the local resources here. I wish I could say I told him everything he knows about mental illness but doubt it. I do know I informed him of all services because I had to do all the advocacy and basically case manage myself.

This is just one example of going into a situation and being lied to, that all your disabilities will be supported and then you’re not. And then the outside people you have to go to to get the support seriously question why the place you’re living at isn’t supporting these issues. And I’m like guys I would love to know that same thing!

One type of housing that really interests me is shared living/ housing. It’s a concept where a person with a disability ( 9.9 times out of 10 developmental) is matched by an agency to a trained care provider that is passionate empathetic too, and otherwise wants to open their homes to someone needing long term support day to day. It’s often called adult foster care because the concept is similar. You work with this agency and they get everything they’d want to know about you and your needs on every level. They then put out a profile of you to their providers. They come back with a list of potential matches. You sit down and talk about/ interview each provider. You have visits. A match isn’t made until the two are comfortable and there is much oversight through the process.

This is what it looks like on paper. I’ve talked to one friend who has done it and she says it’s pretty solid. Can go either way. If there has to be another roommate they try really hard to find compatible matches. She said she’s had some not so good experiences. But nothing she couldn’t get herself out of and it really depends on the agency.

This friend doesn’t have developmental disavilities. She’s blind and has mental illness. And was living in MA at the time. Which is the only state I can find that accepts people who have mental illness sensory issues and other disabilities along with/ besides developmental. I looked into it for a short time. But the thing is you have to get funding which is a long process that might not even happen based on the “level of functioning” talked about in my last post. And then for good reason the whole agency getting to know you, matching process takes a year or more. Well of course I thought I’d be getting everything I would need out here. And honestly didn’t have the mental health energy to stay at my family’s house and had no one else to turn to. Looking back I don’t regret moving out here. I had an awesome time. I loved the concept of having your own apartment, and having meals, housekeeping taken care of as well as companionship and security from other residents and staff. If the facility had even bothered to at least network with outside providers I might have been able to stay there.

There is one facility locally that serves all disabilitys. They do incourage those that are blind to go to the blind facility of course. But even there they say the same that, yes they do have psychiatric disabled residents. They are thankfully honest that you’d need to have all supports for that set up before moving in. At least they’re honest.

In conclusion, why are psychiatric disabilities in their own mutually exclusive it seems, category? Why can’t services be provided in house for all disabilities? Why arent’ those without developmental disabilities offered the equal amount and types of services? If a facility/ program can’t accomidate one disability or another is it too much to ask that they at least network with outside services? I don’t know how or if there will ever be developed such programs that are truly inclusive to those with multiple disabilities. And I don’t know the answers. Probably a huge percent of the problem is money what gets funded what doesn’t. What type of care is allowed under the policies of a facility. That still doesn’t excuse lack of networking among providers. So yeah Sam’s rant number ten thousand on this topic I know. The more posts I write I hope the more people I’ll connect with who get it, or providers who can give a clue as to this frustrating and emotionally draining mystery.

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