Life so restricted for deaf friend at state hospital

So talked to deaf friend again this week. Somehow she had thought Jess and I would visit last week. I feel so bad for her there are only two days a week for visiting Tuesday night and Sunday afternoon each for just a couple hours. She can only call once a week on Wednesdays. I don’t know if this is because that’s when the interpreter can work with her or something else. It is a mixed deaf and hearing unit.

Anyway she was so happy last week but this week is very bored. I don’t blame her. I’d be hopeless in that place. No computer access either.

So of course found out that the interpreter wouldn’t be there for visiting time which isn’t right to me.

So Jess and I would have to do with writing and Jess doing her own type of interpreting which is slow and painful especially as we’ve gotten used to talking on the phone with a trained person.

But anyway the worst thing for me is hearing how little she can do there. I mean access to the outside world and stuff. She’s bored on a good day and lives for walking outside. She’s also on a water restricting med that she doesn’t like.

She said “sad” before she said bye and just wish I could have given her a big hug.

I really wanted to get to the point with her where we could have started tactile signing I’m just sorry we never got there.

Has anyone had experiences with state hospitals? Is this normal is there a way to advocate for the interpreter being there during visiting time?

Today good session with Mr. J and more audio book work

So today was good.

Had to wait a half an hour after time to see Mr. J but got to see him. He’s going crazy. The bed bugs are “kicking his ass” as he says LOL.

Not on our floor thank goodness. On a floor that has a history of issues. They aren’t sure if they’re in the walls. It’s one hundred percent not for lack of trying that this is still happening! They’re doing everything possible including getting a bed bug detecting dog! Like a drug detection dog. I had no idea they had such a thing. Would be so weird to see a dog around here!

So Mr. J had to like actually go to the laundrymatt and do laundry to get the bed bugs out. He wants to test this home made bedbug trap in our room, why our room I don’t know because we’re bug free. He should put it in the dayroom on the floor in question then he’d get a ton. But anyway you put sugar water and yeast in a water bottle and cut the top off. The bugs are attracted to it and then go in and can’t come out again. The yeast and whatever creates whatever it is they’re attracted to on humans. So yeah.

It’s just sad that they’re literally doing everything possible and it’s still such an issue. It’s super hard to get over three hundred people, I’d say at least a third if not more (I don’t want to say half but that might be more accurate) of which have the emotional age of children, to follow directions. Like not get stuff from church donations or thrift stores. They’re gonna bring a steamer box for stuff but who knows how that will go. People not being clean is a huge issue too.

It just makes me shudder to think about the places where people aren’t trying very hard to get rid of the problem.

Because he’s been so busy he hasn’t been able to play continouis phone tag with Gateway and Edens. So no answers at all. And I was waiting two weeks.

He said and I agree that he’s in no rush for me to leave, and I’m not either. The place has to be like here or better, or we have to have a plan that’s as high quality as here p or better.

I decided in the meantime to just show him some of the different places in other states we were looking into. I showed him Rockhill Manor in MO and he liked it. He’s been to that area and says they’re less stressed out than Chicago LOL and that it’s a solid area. I showed him the place in PA but haven’t contacted them yet. I know some of their programs take Medicaid and their personal care homes hold like sixty.

I’m telling ya if every state had these places it wouldn’t be so damn hard!

I’m also gonna give him the huge project of calling DMH in MA and asking about how we could apply from out of state if that’s an option and what they could offer. That will likely be the deciding factor in the whole MA thing. OMG I wish I had some relatives or someone we could live with til we got settled in. Like all grandparents are elderly. Parents don’t believe I need meds. That’s it.

But anyway so we talked about that. Oh we’re still missing my brand new electric toothbrush, which I got at Christmas and should have opened but never did. A few doll things some new socks still in a package and other stuff from when we had our stuff moved. Mr. J forgot about it the minute we were done with our conversation so he wrote it down again.

I asked about going to see my deaf friend at the state hospital. I was very worried that it would be ghetto and like unsafe. But he said no. That the place looks ghetto because they like can’t keep up with the grounds but on the inside it’s really secure. Like everything is locked so there’s basically no way we’d see any other patients besides the one we want to see. He says that it’s kinda like a prison the locked aspect. And they take the worst of the worst cases, or and sadly worst could just mean no other place available like with our friend. He said they get nice rooms and stuff. That gives me a little more confidence.

Certainly need to wait to get more money. Like especially be sure this dental stuff is straightened out. Take Jess to school if needed and then we’ll see. The visiting hours are so limited I’m worried about the ride being early or late and then we’d be like stuck outside. Then we also need an interpreter.

So yeah. He was actually really happy she’s there. And from talking to her I am too. I have seen the change in her with whatever mood stabilizer and he said they’re probably really monitoring her water. I asked if there was some kinda med that would control thirst like do whatever is missing in her brain. He said he didn’t know.

So we talked about signing. He got thinking about the best ways to teach me. He was talking about how since I know my letters to say what letters to do and then have words like “move towards you” “away from you” ETC so it’s the same words every time.

He’s so funny though. As an example and I even forget the word he’s like “make two ls”

Which I did. Well I’m holding my hands up and he’s talking and talking and talking and I’m like umm my hands are getting tired in this position LOL

So that was funny.

It ended up being a relaxed session because we didn’t have the information I thought we would and things have been really good this week.

I asked for therapy homework or some job to do. We’re minus a PRC and I asked of course if he needed help looking! He was like no it’s ok I have some people coming in I’m good for now. I was very sad of course! He knows that’s my favorite job.

He wants me to find good sites that explain things like schizophrenia bipolar disorder ETC in a down to earth way. He said case managers often need down to earth explanations of stuff. I also suggested that a lot of people write really good and insightful blogs on their experiences. You can’t get more down to earth than that LOL

So yeah. I enjoyded my time as always.

Other than that have done some good audio book contacts. Contacted I think three people. Heard back from one author saying she would follow up as soon as possible and I do believe her.

So we’ll see. The more people who send e-mails or facebook message people the easier it will be to get them to realize the importance of these books in audio. No one person can keep a project like that going alone.

So anyway Am just winding down. Need to do my teeth soon, clean those gums. Mr. J did say he’ll get me mouthwash when he goes shopping which is awesome!

Did a signing video today

Hey everyone,

Below is my signing video for today.

It’s interesting how different people see different signs. Like I guess it’s like English people have different accents so hear the same word differently.

Mr. J when he saw the video was saying I was signing “go” for “sign.” Robbie also said this back when we worked together that one time.

But Jess is copying off the signing time video and Rachel and her kids are doing it that way. Jess looked at some other sites and there were slight variations. And then the couple versions of “go” looked nothing like my sign word.

So who knows?

Mr. J said that watching Rachel on the video it really does look like how we were doing it.

I guess that’s why Nai and everyone else is so against videos especially with no other like in person support.

I’m hoping when Jess and I ever do move we can find some really awesome deaf, deafblind or other hearing people to connect with.

Talked a bit about signing in my Mr. J session which I’ll post about next.

But enjoy. Please comment on improvements, or tips for Jess to be a better teacher. She needs it shhh. LOL

Book Review: Bitter Memories by Sue Julsen

I just finished reading an unbelievably sad memoir of a child who was abducted by her father at three years old and abused for all of her childhood in one way or another. I truly admire this author’s courage in even writing this book and sharing all of the horrors she went through. She states throughout it is to stop this from happening to someone else, urging parents to seek professional help for their children if abducted or abused even if things look ok. And the importance of raising children through being loving, teaching right from wrong by example rather than through dominance of physical punishment and always believing in your children. After reading what she went through these words hit home.

Sue, who changedher name to Sarah, lived in TX. She lived with her mom and grandparents for the first three years of life. She loved her life at home. She hated when her father would come home drunk and argue with her mom and when things would get physical she’d run and hide.

Completely to hurt her mother, her father kidnapped her at the age of three. He told her her mother had died in a fire some weeks after he abducted her and never to talk about her again. He stayed one step ahead of the police by moving from town to town state to state and being on the road constantly. He would go days without feeding her. But she got good at trying to stay awake and be sure she saw when they pulled into a parking lot. She lknew at this very young age how much her survival depended on keeping her mind alert and not questioning her father. He would sometimes say loving things to her but could just as easily get angry and hit her.

As if starving her weren’t bad enough he would leave her in the car for overnight or days while having sex with whatever woman, usually a waitress that they came upon when stopping at different towns to eat. He’d then somehow get the woman to let them move in with her. They’d stay for a few days or weeks, and rarely months. One of these women Bobbie, was an incredibly kind good woman who loved Sarah. But when her father saw that she was starting to see his true colors he got right out of there, wrecking the house and stealing things.

He taught Sarah to steal going into people’s open garages for food and a hotel room.

This all was more than horrible. When the first incident of sexual abuse occurred Sarah’s mind could not take it. She felt herself floating away and a very kind protective angel like older version of herself did the things her father wanted.

Her name was Anne. And she was one of four alters that came to protect Sarah. The others were Polly, a young version of Sarah about the same age, Scottie the only male alter and gay and scotish, and Jeanne a hard headed bad tempered pre teen.

Together the four of them took the years of physical, emotional and sexual abuse that followed.

Sarah from the beginning had an awareness of their presence in her life and that it was a good thing. That she was protected.She could “go to safety” inside her head while one of the others took the abuse. But it was always revealed to her in nightmares.

After that first sexual abuse incident her father began to demand this from her among everything else. As did the other scary and truly evil characters they came across. His sex crazed brother and their teen sons, men that her “stepmother from hell” paid so she could get alcohol, and one of her aunt’s husbands. Somehow she indured all this.

The stepmother was a whole issue in and of itself. He pretended to marry her and for whatever reason chose there to settle down. But he even got fed up with Janit’s truly abusive behavior towards him. And there was nothing he could do even to stand up against her. Which always shocked Sarah.

His escape was going away to work. Though with his poor job history I doubt it was really the kind of socially acceptable activity we think of as “work.”

Meanwhile Janit did such things as tying Sarah to trees, tractors, and leaving her for days on the roof. Not to mention selling her to those men, some of which were actually kind to her.

The rest of the time she was drunk or past out.

She had a baby Jimmy that she never cared for.

When they finally left the house Sarah was told to never speak of Jimmy again.

Back in TX we hear off and on about the family’s loss and struggles. Sarah’s Uncle is a cop so he feels so responsible for not being able to find her. Her mother violet is a terribly depressed alcoholic, her sister Barbara is also just as bad and they somehow decided it was a good idea for her to move in with she and the poor old kind grandparents. Henry is always being sent to break up physical fights, or take his mom to a psych hospitals. Which in 1959 was not good at all. She went many times, even after Sarah was found but alcoholism was too much for her.

When S Sarah’s journey sends her back to her grandparents at last, at the age of eight she has no memory of anyone. Which breaks her mother’s heart. She finds comfort and support with her quiet and wise grandfather, and her Uncle Henry. Barbara who she calls “auntie Bitch” and Henry’s wife Olivia make it their mission to emotionally abuse her. And her mother cycles in and out of alcoholic episodes.

After her mother’s tragic death she is sent to live with Henry and Olivia. Henry loves her but Olivia calls her good for nothing, stupid, “just like her father”, that she’ll never amount to anything. She also “tries to beat the meanness out of her” with physical punishment which was common during that period of time.

At the end of the book Sarah tries to summarize her life following when the story stops at age nine. She says eventually she found a good therapist and was able to work with her alters. Who faded into the background of her mind once the memories were processed. She’s found forgiveness to most everyone in her life which I don’t think I could ever do.

I think this book could be very triggering as all abuse incidents are described in depth. However it is a very good read as we’re constantly aware of Sarah’s thoughts and emotions and mental tricks she uses to stay one step ahead of her abusers. She also has a sense of humor that keeps her going which is surprising and cuts to the truth.

good day got a lot done


So today was a really good day. Finished The Girl who Just Wanted to Be Loved which I reviewed and loved reading.

Started my assisted living under sixty five support and advocacy group. Wait did that yesterday I think? Anyway so yeah. We’re gonna create a survey about people’s needs around this, what people would want in a facility, location, cost ETC. Hoping the group will take off.

Talked to mom and Krissy. She was so busy she didn’t get a chance to skype with me but we talked for a few minutes. I never know when I’ll next talk with her. Sometimes I worry she’ll get out of college and just float off to Africa or the north pole or something and disappear into the world of animal science/ being a warden in the forest or something! I’m not even kidding. I’m like why don’t you start a farm group living place for people with disabilities. I’d actually live there if she started it because I’d make sure there were really good indoor options for stuff and like super good wifie LOL. But she’s always like no don’t want to LOL!

My mom’s ok I’ve been worrying about her as she’s been having really bad stomach issues getting sick after eating for who knows how long. She puts things off so much and I just hope it hasn’t turned into something really really serious. But she’s going to a specialist Friday.

I was a bit concerned about who had paid for the plane trip to and from FL where Krissy went for spring break. Because if my parents did then we would have a problem. They’re whole mind set around me not being able to come home to visit is lack of money. But I guess it was her own money she saved. She does a ton of work at the horse barn when at home.

So that’s been my day.

Book Review: The Girl who Just wanted to be Loved

I just finished reading a truly amazing memoir by Angela Hart. This is the first of her books that I’ve read and I loved it.

Angela is a specialist foster carer in the UK. She and her husband, Jonathan, have been fostering since the late 19800s.

This book it seems is set in the late 90s, but was written in 2016. Angela often makes references to the advice/ resources that were available at the time of fostering Keeley and what is available now. Much more is out there now around issues of attachment disorder, and secondary PTSD.

Angela and Jonathan were contacted by their link worker Sandy about fostering eight year old Keeley because she had been turned away by several carers in the past year and a half due to her behavior which included bad language, rages, constant lying , hygene issues and didn’t seem to be able to be guided by any of the mainstream parents. It was felt that Angela and Jonathan, being specialized foster carers had extra training that could help with this.

At the time they had two boys living with them who were generally well adjusted and settled at home. They soon met Keeley and on that first day they witnessed Keely’s swearing and need to control. However when she came for respite, a trial few days, she seemed to be really engaging and sweet. She seemed to want to please and there didn’t seem to be any of the negative behavior. Until she went out to play and hit another child. And ignored Jonathan, which she did for the intire time she was in the home. She treated Jonathan like he was invisible. She also would bruese herself for an unknown reason. It could be self-harm in order to let out her emotional pain, or to gain attention. It seemed she was very possessive of Angela just wanting her and only her around.

In spite of this switching between good and bad behavior and her testingthe family, they decided to take her. Her behavior was such that she really could not remain in mainstream foster care and would have had to go to a specialist unit.

The next six months were a huge rollercoaster ride for the family. Filled with good times, Keeley joining a theater group, helping Angela with artwork, going shopping with her, making a good new friend. These good moments were overshadowed by really shocking behavior. She would physically fight with the boys and verbally abuse them any chance she got. Her jealousy around Angela was very pronounced and made family times very hard. Everyone was walking on eggshells because they were afraid of when she would go into her next rage/ abusive comment to others.

Standard behavior techneques such as time out and taking away rewards/ star charts had no effect on her. They either made her more agitated or she simply didn’t care. What calmed her down was individual attention but even when it was just she and Angela she still could make very mean comments about her and then go on as if nothing happened the next minute.

Everyone knew where this behavior came from. Her mother was emotionally, physically, and possibly sexually abusive. It was thought that her grandfather was also sexually abusive to her before she was taken into care. She was getting therapy only once a month. And shockingly, at eight years old she was allowed to go into therapy by herself and everything was treated “confidential.” So that Angela and Jonathan had no idea what went on there nor could they talk to the therapist at all for advice.

Angela was extremely careful to note down everything. It seemed like Angela would get a handle on one behavior and then others would come up, but then that first behavior would come back again. No matter what happened Keeley’s way of handling everything was to lie, even if it was incredibly obvious take no responsibility and just go on to the next episode or be good for awhile when it was something she wanted.

It was her link worker Sandy, who told her one day that Keely’s behaviors reminded her of a conference she went to where Attachment disorder was discussed. She explained what little she knew about attachment disorder, the results of a failure to bond to caregivers within the first three years of life. Which accurately describes Keeley. She mentioned a psychologist by the name of Dan Hughes, who is well known in the world of attachment disorder. Because it was late 90s there wasn’t facebook, all the authors out there writing about it, or anything else. All Angela had was his basic model of working with kids PACE. Which stood for playful, accepting, curious, and empathetic as ways to respond to a child when they’re displaying these behaviors.

Angela put her whole heart into using this method. And sometimes it worked. And even Jonathan could disarm her with a playful response. Angela realized that when Keeley thought that she was upsetting her, and that her behavior bothered her she seemed to really enjoy doing it. But when Angela acted like it was no big deal to her (I.E not a problem for her if she didn’t get into the car, take a bath ETC) Keeley sometimes would respond by stopping the behavior.

Angela and Jonathan did the best they could with such little information. Parents and caregivers today have a good amount and variety of techneques to choose from and mix and match. Which is important for this kind of child because you need to stay a few steps ahead of them. Angela also was not in touch with anyone personally trained in these ways of working or even the concept of attachment disorder. Both Sandy, and Joan, Keeley’s social worker were supportive but I’m still shocked that the therapist could not be accessed.

What really took a toll was Keeley’s affect on the other boys, particularly Phillip who had anger management issues of his own. Keeley knew just the right buttons to push on meeting anyone, and so got really adept at bullying Philip. It was really maddening and sad to see how she tormented him and Carl, and the rest of the family. This Angela and Jonathan could not put up with forever.

They said so at a placement meeting. Where they learned that actually Keeley being placed with them wasn’t the ideal solution. They knew she should have been placed with a single carer because of how Keeley was better with one to one attention. In the same meeting it was said they’d need to find two single carers as one couldn’t handle the emotional toll. So not sure how that would work, if they’d come in shifts or something. But it was clear her being in a family setting was something social services knew wasn’t exactly the best. But they said they didn’t have a choice. Angela and Jonathan, while not wanting to make it sound like they couldn’t cope in general were clear it wasn’t doing anyone any good to have things remain how they were. There were weekly contact sessions with her emotionally immature mother but Keeley was under a full care order so no plans to return home.

The father who previously was said to have completely disappeared long ago was contacted and moved back to the area very much wanting to connect with Keeley. While it was a shock to everyone that the case might go this way, (Keeley moving in with her father when she had such issues with male caregivers) anything was better than how things were.

Something else that helped relieve the stress was Jonathan and Angela talking to a counselor. This counselor was very patient and understanding and totally encouraging. She said they’d done everything they could, and addressed their feelings of burn out. What was called at the time transference. This renewed their energy to go on a vacation just before Keeley moved. The vacation was full of huge ups and downs ending in a nasty physical confrontation that proved enough was enough.

The family just barely made it through those last weeks of the placement. You would never think things would go well with Keeley moving to her fathers but they seemed to. When Keeley by chance saw Angela and Jonathan ten years later she was a polite and emotionally together young woman. Reading between the lines it seemed like she had had hard times and would always deal with the trauma of her past. But that incredibly her father, and mother were supportive the best they could.

I really really love this book. Because it shows truthfully every event that occurred in the house and exactly how a child with attachment disorder functions. The lying, stealing, physical and emotional bullying, playing dumb, hygene issues everything will resonate with parents and caregivers of children with this disorder.

Finally created a group to discuss and plan advocacy around assisted living under 65!

Hey everyone,

So created an e-mail group that will hopefully put all my rambling on and on talk about this subject in one place.

This group as I see it right now, is for both support and advocacy. Support for anyone searching for or living in any kind of residential setting. So this could be group homes, adult foster care, RTFS, supportive living ETC.

The other part is advocacy. Discussing and reaching out to others to see what people are most looking for in an assisted living community.

Am hoping to get a wide variety of members: consumers, caregivers, disability professionals, people from assisted living organizations ETC.

As we get members we’ll see what people want to do.

Below is the address

Subscribe: assisted-living-65+subscribe

Dentist appointment yesterday: Swollen gums and chip in back molar

Hi everyone,

I thought I wrote this yesterday but guess not I was tired.

The dentist appointment was surprising. I admit I don’t take care of my teeth as much as I should. I’ve never been good about brushing in the morning. Except when I lived at home and my mom reminded me about it.

And honestly will forget to brush at night sometimes. And I know flossing is important but I sometimes forget that too. Or lose the flossers which happened a couple times. Also my electric toothbrush that’s supposed to be best for your teeth and gums breaks so easily. Like decides to just stop working won’t turn on ETC.

So there’s all that. I noticed the day before that my gums were swollen which often happens. But I told Jess well she probably won’t be happy about this!

But I didn’t think it would be the whole issue.

I did ok anxiety wise. Getting to the van on time, the ride someplace at times, and waiting can all cause anxiety for me. I did take an ativan in advance so was ok. It was hot and crowded in the little waiting room.

Got in there and Dr. Anderson was like I don’t know what happened. Last time I saw your mouth it was all nice and shiney! Now it’s all swollen!

So she had to do a “deep clean.” She said that it was hard for her to see everything with my teeth around any new cavities because it was so swollen. She did say that believe it or not, I had a chipped back molar. Later I had Jess look and show me and I felt it and it felt very small if there at all. Have no idea how this happened.

Anyway because of all this I have to come back so have an appointment for the 31st. Another deep clean and either smooth the little chip thing down or do a filling. She had said she wasn’t sure if I had another cavity because she couldn’t tell. I don’t know if she meant the molar with the chip or something else.

Jess was there and she talked to her about it too. Jess is helping me with salt water rinsing watching me brush and looking at my teeth. So it’s a joint venture. I feel really secure with her coming to my appointments so she can support me with whatever is happening.

So hoping for the best.

Told my mom. She said she wasn’t surprised and said the food could be part of it. As in saying ice cream is a supplement is just crazy! She also says, and she says this for everything, that my psych meds could be causing it or contributing. Never heard of that but when I posted to a support group I’m in someone said they heard this. That all long term meds mess with your teeth and gums. My mom said that with her inhaler it even says after you have to rinse with mouthwash because whatever stuff is in that is bad for your mouth.

So yeah. I’m beyond relieved that I have this dentist and that it’s under Medicaid. They better pay for this extra appointment! Jess says it’s the facility’s problem if they don’t which is ture. I know many others would have no idea how to find a dentist on Medicaid. Actually should give the contact info to people I know at other facilities mostly where Robbie lives.

Any thoughts on psych meds and oral health?

Really happy for my deaf friend

My deaf friend called today from the hospital. It was really really nice to talk with her. She’s doing really well. Says she’ll be discharged in a couple months and go to a group home. Said it was the same one she was made to leave so we’ll see. But she’s super upbeat and happy which is great to see. I guess this mood stabilizer she’s on is really working.

She wants Jess and I to visit her. I want to but have never gone to a state hospital. Visiting is only four hours a week two on Sunday and two on Tuesday night. That really sucks.

But anyway I told her Jess and I were learning more signs and about signing time and she seemed happy with that.

She wanted us to bring her pop and coffie which is so typical!

It’s just good to connect and know she’s ok.

very lazy day

So today was the laziest day ever.

Mom had put money in my account for me yesterday. Actually my sister did it. I was surprised she just didn’t keep the money for herself! Usually she just tells me to “get a job” when I talk about needing money in my account. I guess she still said that but did it anyway. Mom wasn’t feeling well so she did shopping too. She’s going to see a friend in FL for this week because of spring break. We were gonna skype but not til the weekend when she gets back home.

Anyway so we had money and I woke up from my nap wicked tired. So we decided to order out enough pizza for both meals, though I absolutely hate cold pizza plus a snack. So I just ate, slept again til two! Then Jess woke me up to not have me sleep all day. It was relaxing though to just stay in my pjs which is one of my favorite things!

There’s a huge snow storm coming tomorrow. March, go figure! So I’m canceling the dentist. No point going out in that weather. The place has such weird hours I won’t be surprised if they just stay home. Speaking of dentist, my mom and I were laughing so hard I guess my sister got the bright idea to put charcoal in toothpaste and brush your teeth with it! That it like cleans off all the stuff in your teeth, tartar or whatever that you would go to the dentist for and she just went anyway!

Putting that out there in case any readers have heard of this. I think it’s crazy and wouldn’t be surprised if it ended up hurting her teeth or the rest of her mouth, or stomach if she swallowed it.

But anyway. I guess I’ll be anxious about cavities and how my fillings are til next week LOL!

Other than that not a whole lot else going on. Listening to an audio book, really happy my Braille sense is fixed and just chilling on facebook.