very emotional day yesterday doorknob broke!

Hi everyone,

So yesterday was a hard day for me. I think I’m finally like having a little break down after everything that’s been going on. Not even hearing that my deaf friend was finally discharged and at a group home, for now, made me as happy as it should have. I was just too drained and anxious to be as I know it’s only temporary.

Also just a lot of other things on my mind. Really sinking in about my psychiatrist leaving. And Jess’s. Worried most for her as she’s had this person for five years and has seen her through all the self-harm incidents and knows when to hospitalize or not, understands cutting ETC.

I know Jess gets in hard places easily before she or anyone else realizes it. She’s doing well now focusing on school and stuff. But still has yet to be able to move back to our room which hangs over her head I know. And she does go to the hospital often enough, and I feel for her it’s used as a place to sort of reset herself get away from Albany, have individual time to herself with professionals that really do care. Which is fine. Mr. J says there’s this stigma around hospitalization even here at Albany. He even catches himself saying to someone so awesome you haven’t been hospitalized in six months. When really the thing to say is so awesome you’re doing so well since you went to the hospital six months ago which is one reason why you’re not there now LOL!

So I feel it’s essential that the Dr. she, and I, get and the hospital unit are equally important. However right now all we have coming to Albany are all psychiatrists who go to St. Mary’s. Which I forget if I wrote about here but it’s basically like one of the worst units, well that I’ve been. If I had gone there for my first hospitalization I would not want to go inpatient ever again! They literally think people self-harm because: either they’re attention seeking (borderline or otherwise), or psychotic and being comaded to hurt themselves. That’s it. The first time I went in the social worker seemed nice and we had a good private discussion. She even sort of wrote an order to my trilogy caseworker recommending I go to a cat shelter as a therapeutic activity. But then she got impatient with me because I self-harmed in the hospital so was put on one to one. And that was kind of it. You’re put on one to one can’t have anything at all and just lay in your bed. Have to have your hands visible at all times. Like nothing to do at all.

Then this other time I came in sort of very suicidal made a kind of suicidal gesture, tried to break something glass that could have hurt me more than say my nails. I was in there for five days, they didn’t even talk to me about it! The same social worker was like oh it’s you again. What were you doing cutting? I was like I don’t know. She’s like you don’t know. It’s the end of the day I have to go home and you don’t know whty you cut?”

So yeah all that to say I will not have my big sis going to this hospital when she’s in crisis and needs a reset.

So anyway I did find out they initially have matched her with one of the newer doctors that comes here. There are two new ones but they both go to St. Mary’s and Chicago Lakeshore which is another bad one. Physical fighting and stuff goes on over there. Plus they’re mean they hung up on Edith and I a few times.

So I was crying. Terrified for her as she signed the form. Which really is just agreeing to transfer her care to this guy but if she has one meeting and doesn’t like him she can find someone else. I just don’t understand why it’s so hard to find a good psychiatrist that goes to a good hospital. And living here at a SMHRF it’s essential that a person have a good hospital to go to because it can be very useful but only as good as the unit and doctor are.

Of course the doctor is the most important thing obviously! But so often people need both and I think Jess is a prime case of that.

Me. I haven’t been hospitalized since 2014 yay! But knowing Masonic had my back was like a security blanket. It sounds like a more and more awesome place every time Jess comes back from there LOL! Plus the amazing treatment my deaf friend got. Just knowing it was there took away my anxiety about being hospitalized. That and Fyazz usually is not a hospitalizer. She really waits it out which is good I think in my case at least. And she understood my harm reduction care plan I.E when to hospitalize and not hospitalize. Which regardless of the hospital, would be very important for whatever doctor to understand. I just am triggered by the mention of St. Mary’s and anyone/ myself having to possibly maybe go there even if it’s like a baby chance.

So I cried about that. I cried cause I miss Edith. Things have changed so much since she left. I was just like emotionally done. Then after dinner comes around. We go to open our door with our awesome keypad door lock, which was a creative solution to keys being not good for two cutters. It wouldn’t light up or beep or anything. It was like OMG major Panic! That got me going worse than ever because all I needed was a bath and bed. But I had to stay up and hang out in Jess’s room good thing she has a quiet area in that room. Long story short Robert from Maintinance was woken up and had to come out. He got there a little after eight. He had to forcefully break the lock off. He broke the latch to save the doorknob. And that made terrible loud, bang down the door noise which got me more upset. Then he realized the latch was specific to that knob. So installed a temporary regular doorknob that wouldn’t really close exactly right but it was ok for the night. Then happily today he came back with a special ordered latch from two hours away. He now has a spare in case this happens again! And he just put new batteries in that knob. He said it was one of those random incidents that happens every day around here LOL!

Anyway I was so exhausted from all that that I slept all night. Until I had to get up super early, six forty five for meds, out by eight to take Jess to her psychologist.

It was a nice little area. I guess about seven therapists. I chillaxed in the waiting room. Jess said she really liked the woman who offered one of her stress balls so I have a stress ball yay!

Then we went to the gift shop and this lady gave us free snacks. Saw this awesome doll that’s hand made with velvit and cuddly but it was like $18. I guess it was normally $27 so she gave us a discount. Still couldn’t buy it. I would have named it after the therapist and Jess could talk to it between sessions.

Came home and took a major nap!Slept from twelve thirty to three. Feeling much better. We ordered pizza today for both meals so we didn’t have to go down at all. So yeah am happy Jess had her first part of the intake and liked the person. Really hoping I can have a good Jonathan meeting on Friday. Where we can find a good person for me.

resigned

Feeling down and just I don’t know resigned to some pretty annoying/ [possibly not great things coming up/ happening.

So it’s the 16th. Haven’t seen Dr. Fyazz this month. So glad Jess found out at her appointment plus word has gotten around really fast that she’s leaving. The last conversation I had with Mr. J I think was before new years I totally forget if we’ve had a session since. He said he had all month to work on this. He always says stuff like that Mr. optimistic like oh I should be back to work after severely breaking my wrist in like two weeks LOL!

I do believe there are one or two new psychiatrists to add to the very low selection. We have Dr. Dyzann who was my first psychiatrist. He just drugs people up basically and hospitalizes every two minutes. At St. Mary’s which is said to be the biggest place to hospitalize and I guess has a lot of Medicaid support. Probably why they use it so often. They like want to fill beds and make money. When I’ve been there there have hardly been any groups at all and I’ve just lay there in bed. I could have been in the dayroom but would rather sleep. One time I was there I had wanted to cut myself with a nail polish bottle as a suicide attempt and no one even talked about why I was there! Ever.

Left him as quick as possible. And you all know about Sharon Glickman and Dr. Gil. Loved Glickman she reminds me of Dr. Lentz. Great to talk to. Gill is terrible and you know all about my three week stay at Thorack like jail basically.

There’s someone named Dr. Patel. She doesn’t come in that regularly and works at Norwegian the hospital where I went to the IOP. IOP wasn’t the greatest though some therapists were ok, but yeah. I know in between Gill and Fyazz there was a good reason why we passed on by Patel.

Then I think there’s someone who admits at Lakeshore which I’ve heard bad things a about in general. Called them and I think Edith did as well about their IOP and they hung up on us.

I don’t know about these new doctors except Jonathan said they’re younger. Whatever that’s supposed to help with. Anyway so yeah. I have heard they admit to St. Mary’s.

For those curious about why I’m so focused on hospital units. For me, knowing that I could go to such a great unit like literally was part of my support system. There was so much safety in knowing how good this place was and that if I needed to I could go there. Like having someone’s phone number like say a hotline number or something. You’re pretty sure you won’t use it but having it there makes all the difference. If I have to be stuck with someone who admits to a crap unit it will I feel increase my anxiety about OMG what if they hospitalize me! Because instead of seeing the hospitalization as possibly a good experience, which I feel those I’ve talked to at least that have gone to Masonic have had, I’ll go in knowing how terrible in general the place is. So it’s really important to me even if I never *need it* in the sense of get hospitalized, the concept of it like really helps me. This could be one of my Sammy weird logic things Mr. J talks about but it’s the truth.

For someone like Jess OMG. She really needs a solid unit! She needs the security of knowing that when she’s hospitalized, it will be a safe place to help her stabilize get away from Albany get individualized care in a low key therapeutic environment. That can not be said about St. Mary’s just no!

And the thing about IL is the psychs can only admit at hospitals they have admitting previliges at. So if someone admits to St. Mary’s no matter how much anyone hates it that’s where you go. They also play this terrible game where if they know someone will be discharged in say a day they’ll say there’s a bed available. So the person has to chillax in the ER for a day and a half or something til the person is actually discharged! A tech explained it and I couldn’t believe it!

It’s hard enough to find any kinda psychiatrists on Medicaid here in IL. And I can say for one hundred percent certainty that if I were not in a SMHRF I would not have a psychiatrist regularly. I would likely still be on waiting lists, with out of date medication management stuff going on and like hardly seeing someone. Or I’d be stuck with someone like Dr. S (he has this really long greek name) at St. Frances. Which sadly doesn’t even have a psych unit but you usually go to the ER there to be evaluated and then transferred to St. Jos so I’ve heard. But anyway as far as I know they only have one psych there. He was the one who mislead me about welbutrin and I had those lovely seizures. So that’s kind of out. Anyway all that to say finding a psychiatrist is a huge deal around here.

So I guess I should be lucky I get anything at all. I have a feeling people will just be shoved over to the new doctors caseloads as Fyazz had quite a caseload. Jonathan said there could be other options I know you can see a psychiatrist outside of Albany. But they have to agree to this really weird on call policy and other things. So who knows about that. People say talk to your PRSC but they really don’t know anything at all. The medical secretary person who schedules people to see their doctors here people say can make recommendations but I don’t even know. I’m kinda like whatever. What will happen will happen. It was just so huge for me to have someone I actually liked and trusted. Who I knew was sensitive and intelligent around meds, who understoodcutting which is another huge thing and then there’s the hospital thing. Now all those things important to my care are hanging in midair to be determined by whoever gets my case going forward.

Also found out that once Jess does the intake for the psychologist on Wednesday and gets set up it will be at least a month of sessions before she comes back here maybe longer. Just miss her soo much at nights it really isn’t the same with her really not living here. I know we’re really lucky staff let her visit, as in be down here most of the day. I guess they’re really concerned about cutting that’s happened in the room and maybe other things I don’t know. Again can’t do anything about it.

It could be the weather that has me in this mood it’s pouring out.

working on editing most of the day

Hey everyone,

So have been editing away on this blog. I wish there were a find and replace feature so that you could change one word to another across all posts. As I’m replacing my friend’s name with a fictional name I never realized how often I used her name! Also have taken out other identifying details. Will be glad when this is done and I know it’s good practice for me not to put out such information in the future.

Other than that not much went on. Very hungry wish I had money for snacks. We thought my family would send a package with food and stuff a couple weeks back so when we went to Walmart we only bought one snack. So yeah just hoping we can get that straightened out soon.

I’m planning to take Jess to her intake appointment Wednesday. Staff here seemed to not work on getting transportation ready so I can take her on the van. Will just be extremely tired as the appointment is at nine AM. It’s just a relief to know she is seeing someone. Just hope it will be a type of therapy that will work for her. Just plain talk therapy can be really hard and I feel creative arts therapy of some kind could help her access emotions and then talk about them. I know nothing about the behavioral health program at the hospital and wish I could look up all staff. Hate seeing anyone have to be matched up with someone and not know about them beforehand.

We’ll just have to see.

Book Review: Brave Girl Eating by Harriet Brown

Important Links: Audio version read by the author: http://www.audible.com/pd/Bios-Memoirs/Brave-Girl-Eating-Audiobook/B00EUC5PA4/ref=a_search_c4_1_1_srTtl?qid=1484358146&sr=1-1

Author site: http://www.harrietbrown.com/bravegirleating1.html

Family based treatment/ Maudsley approach: https://www.google.com/search?q=Family+based+treatment+eating+disorders+&oq=Family+based+treatment+eating+disorders+&gs_l=serp.3..0i22i30k1l4.6819.13952.0.14192.41.28.0.10.10.0.172.2492.9j14.23.0….0…1c.1.64.serp..8.32.2428.0..0j35i39k1j0i131k1j0i20k1.lb4H6kNOu7c

I just finished an absolutely amazing memoir about how anorexia touched one family and a mother who would not give up until she found the right care for her daughter.

Harriet Brown is a journalist. She has a journalist’s clear eye for detail and conviction and passion to explore all sides of a story with scientific research. When her 13 year old daughter Kitty, suddenly develops anorexia, Harriet is in denial at first. Kitty is intelligent. She wrote a paper about eating disorders once. She is someone who usually bounces back from the down times in life. Their family is not one where her parents are critical of her, in fact she places very high expectations on herself. At first her mom thinks it’s a phase she’s going through. But as the weeks go by and she continues to lose weight and restrict to a dangerous level there’s no denying anymore. Particularly after a terrible trip to the hospital where Kitty is in the ICU for three days.

At that point Harriet takes time off work a and combines her talents in journalism with her feerce devotion to her child to take this head on. She quickly discovers that the popular treatments/ research on eating disorders does not at all fit her family. She does have a sister with bulimia. She herself has dealt with panic disorder. So there is some genetic predisposition but not a huge amount. The main research focuses on the typical family that they say “creates” an eating disorder. A family where the child is put under overwhelming amounts of pressure to do well in all areas of life. Where all emotions are denied and expression not encouraged. Usually the mother is extremely emotionally dominating and the father is passive. The child develops the eating disorder to (broadly) control the one thing she can in a stifling and emotionally abusive environment, and as a way to escape growing up. As though her family is on the one hand extremely stifling, she is also then extremely dependent on them and sheltered. This creates mixed messages and the set up experts say for anorexia in particular.

Harriet says again and again that she would take any blame thrown her way if it meant Kitty could be free of her disorder. But she just doesn’t see the connections. And she doesn’t see that there’s anything different she can do with Kitty in relation to what is suggested. When she attempts this route, sees one therapist who tells her not to be “the food police,” attempts to have Kitty go to partial hospitalization, Kitty becomes even more anxious terrified of being away from her family. And it just makes Harriet feel worse.

From the start, the family is blessed with an amazing Pediatrician Dr. Beth. Dr. Beth is the one who first diagnosed Kitty. She gives the family a huge amount of hope from the start saying that one third of people with anorexia have a full recovery. She refers them to a psychiatrist that Harriet calls Dr. Newby, because she’s young I guess new to the field. Harriet and Kitty don’t particularly like her. She tries different antidepressants. Prescribes some PRN a anti anxiety meds which do sadly end up being used when her symptoms get out of control. Once they even try an antipsychotic used in eating disorder treatment. It’s the one med that seems to work however side-effects stop them from continuing it.

So meds aren’t helpful. Tradditional ways of therapy and beliefs about eating disorders aren’t helpful. Harriet’s husband Jamey and Emma, Kitty’s sister are left along with everyone else to struggle against what Harriet calls “the demon,” or “not kitty.” From the beginning she does an amazing job of vividly personifying and separating her daughter from the illness. Something I feel is vital for both those that suffer from any psychiatric illness, their loved ones and professionals. She refuses to believe that Kitty is “choosing” this disease, or that she just needs to “choose to eat” She stops yelling at her daughter trying to bribe her reasoning ETC. She realizes there is no reasoning with “not Kitty.”

One day she happens by the library and finds in new arrivals a book called Eating with your Anorexic. It describes a totally different approach to the treatment of eating disorders. Family Based Treatment, FBT, or the Maudsley Aproach. FBT does not blame the parents, or the child for the disorder. It does not focus on sending the child away or forcing them to do something that is neurologically imposible, which is to have insight into their disorder when they’re literally starving. FBT puts the focus on the parents taking control of the child’s eating. In a loving but firm way. It was discovered at Maudsley hospital, somewhere in the UK, that nurses who spent hours calmly insisting that the child eat, quietly talking to them and otherwise creating an environment where the task was nonnegotiable, saw results. Another psychologist developed the idea that doing this in the hospital is not enough. That parents need to do the treatment at home for it to be effective.

There are three stages: Weight restoration, giving control of eating back to the child, and the child resuming normal development/ life. This is just the thing that Harriet intuitively has been searching for. Something practical scientifically based and that focuses on the solution, on a purely physical level. Throughout the book Harriet adds to the story by detailing some very interesting research findings, around the neurobiology of starvation, and other physical biological processes. Basically saying that there is absolutely no way that someone can engage in productive therapy, or really do anything until they have their body back in balance. Their brain’s abilities are terribly compromised.

So with her husband on board they start the process of refeeding. They become experts in nutrition and calories. It starts in the summer. They put breakfast, morning snack, lunch, dinner and bedtime snack in front of Kitty. And wait. And watch as “not Kitty” attacks Kitty and do everything they can to help Kitty win. It’s heartbreaking to hear of Harriet’s descriptions of her daughter trying to get through each meal. Dealing with physical pain, huge amounts of anxiety and rages. She tries to physically hurt herself and Jamey must restrain her. She verbally puts herself down for hours. She sobs and has panic attacks. There is no reasoning with “not Kitty” and often no getting Kitty back in control. They had to learn to just wait it out.

They have weekly weigh ins with Dr. Beth. Dr. Beth also will spend a couple of hours for some appointments and in her own way acts as a therapist to the family, or at least emotional support consultant. They also do find a therapist they call Ms. Susan. She builds a good relationship with Kitty and her parents and has the hopeful practical approach that fits with FBT. Unfortunately there are no FBT trained therapists in the area. But Harriet later consults with the director of an eating disorders FBT program and strongly advocates for the training and spread of FBT to this day as does Kitty.

Through it all they have other battles. One is of course the insurance company. Harriet describes the ins and outs of literally having to beg for extra sessions. And the huge incredibly alarming disparity between physical health and mental health. How Kitty’s ICU stay was basically covered, yet getting weekly therapy, and psychiatry visits is almost imposible beyond the allotted amount of money per year. Which is incredibly limited and that they unknowlingly wasted some of with the first bad therapist. The most telling incident on just how cruel the system is is when she describes putting together a huge amount of documents and being given ten minutes to present her case at the insurance company. She does so. They seem to at least look thoughtful. The next day she receives a denial letter. Judging by the time the letter was sent plus the time when the meeting was she figured that the letter had likely been written if not sent before she actually made her case.

She often said she was lucky to have a job where she had the extra financial resources to cover care. Not a ton of resources but more than many many families. A continued advocacy effort for her continues to be around access to mental healthcare that is actually compassionate and treats people like people and not just a number or too much money spent.

The refeeding process has it’s ups and downs. At times Kitty seems to be getting better. They come up with an abbreviated school day around her meals at home. She is starting to hang out with people, guys who don’t focus on body image or food in the way girls do. She connects more with her sister and there are more glimpses of happiness. But then there are the back slides the times not Kitty comes out in full force.

And the most frustrating thing ends up being the lack of weight gain even with calorie intake that can’t go any higher. It turns out that there is documented research around metabolism that everyone has a set metabolism a rate in which they process calories that basically can not be changed. So the theory of forcing oneself to lose or gain weight by some kind of fixed schedule is not physically possible. Especially for a developing teenager. So her target weight keeps changing. By the end of the book they still hadn’t reached it. As time passes Kitty becomes more insightful around her eating disorder. More willing to articulate her feelings about it and is able to do more in the way of therapy. But not before starvation was stopped. Harriet also discovered that long after that initial year of refeeding, if she restricted even a little, didn’t get a full day’s calories, her mood would have a sharp downturn.

Basically as much as Harriet, and the family wanted to turn their backs on “the demon” forever and not to be one of those families where the person is always trying to “manage” their disorder, they come to accept that it will have to be managed. There will be times that Kitty loses the ability to manage her own weight. And her mom is committed to being there no matter what. Learning when to step back and let Kitty have her independence and control of food, and when to stand up to “not Kitty” as she tries to resurface and take her child away. She won’t let that happen again.

She mentions at the end of the book a public service add on mental illness that only ran for a few days. It was a series of ransom notes stating things like “We have your daughter. We make her throw up every night. There’s nothing you can do.” The same was written to personify, anxiety, depression, and other illnesses. She believes the uproar, which caused the removal of the PSA was due to people wanting so much to feel in control of these terrible things that were stealing their children’s minds and their lives. But the thing is They, the illnesses, outside of anyone’s control, were stealing their lives. It isn’t the person’s fault. It isn’t the parents fault. They need professionals who in their hearts understand this. Who are willing and able to stand with the family against whatever it is and fight until it’s gone, or at least too afraid to come back in full force. It reminded me of a powerful therapy session where I was told I was being “mugged by my emotions.” It was true. I had no idea how to deal with my feelings. They came out of nowhere and attacked me. I had no idea what was ok to feel so assumed anything but neutral or happy wasn’t and so again and again was vulnerable to them. I had nothing to fight with.

These are powerful and perspective changing metaphors in the world of mental healthcare. I feel the Maudsley approach should be included in the basic overview of eating disorder research and treatment. So that at the most basic level of understanding it’s there. As another lense on things. Are some people’s eating disorders caused by emotional trauma? Yes. Are some people dealing with a multitude of disorders to the point that you can’t tell what caused what? Yes! Is every family judgmental and unhealthy. No this book proves that. Harriet says in the end that she feels more families could do FBT . They just need confident professionals, and mentors who have been there. I wonder if or how this approach, nonjudgmental family based, could be transferred to the treatment of other disorders. I highly recommend this book packed with both extraordinary scientific information as well as an emotional raw and truly hopeful journey of recovery.

doing some editing and powerful lesson around consent to share information

Hi everyone,

I have recently learned some important lessons around sensitivity to personal information revealed by one person to another and how vital it is that this person then ask permission to repeat this, regardless if the person feels nothing would come out of the telling. Or the person never said don’t repeat this.

This is especially important in the survivor/ disability/ GLBTQ communities. I had to deal with a tough situation involving some friends feeling that information I shared about someone totally unrelated to our circle was way too much and it made them uncomfortable that I didn’t ask permission/ said so many details.

This is a totally new concept. I understand confidentiality but this is a bit more complex. I feel bad that I never heard of it before and wonder how many people I’ve heard by ignorantly saying things. I plan to work on this in my life as I want to be good friends to my friends and be seen as a person who you can share with and feel comfortable opening up to.

This has also made me consider this blog and how much I share in talking about my personal life and including names/ descriptions of the people in it. I do apologize to anyone if I’ve said things that were meant not to be shared or that when reading them, make others uncomfortable that I shared about someone to that degree. There is one clear case of this in my life at the moment and will be editing posts to reflect this.

So in my editing and in future I will be trying to honor this value which I said is new to me but I do want to learn. I will be clearly stating whether I have permission to share something. And just to be safe create fictional names and shape the narrative in ways that don’t give away details about another person’s life where I can.

Please be patient as I learn this new way of relating to others. I may mess up and I apologize in advance.

And please readers feel free to give me feedback, privately or in comments on how this is going or if you feel uncomfortable.

Temporary solution for my deaf friend have mixed feelings

Hey everyone,

So there’s been a breakthrough with my deaf friend. The social worker has really wanted her to get out of the hospital. He says it’s keeping her unable to try to do things like actually find a stable home ETC.

He did pull a lot of strings to manage what he has and it’s by no means ideal, in fact the opposite of what I and others originally felt she needs and at least I still do.

So as stated before no SMHRF/SNF will take her.

The group homes in programs are totally full. However at one of the places they’re basically gonna stick an extra bed in a room. For a temporary place. It would only be a week or two and she’d technically not be considered a resident as they can’t go over their numbers. But it would give her and her case manager time to do things. So the long term plan for the moment is to get her into a single room occupancy basically an efficiency apartment. They have a building in mind. It would be totally independent living with caseworker/ staff checking in I’m not sure how often.

She’d have outpatient medical care. And outpatient therapy and psychiatrist. She’d have her SSDI in her name to pay rent and other things.

The social worker at the hospital did wisely admit that it could go both ways. Go really well or go terrible. He said to keep “nudging” LOL these facilities or rather getting people to, as she might need to go to such a place in the future. Plus it’s the wider issue.

I mentioned my concerns about her taking her meds and especially the physical health issue. He said that she’s been discussing that at length and finding ways to cope. That she can’t use in the hospital. She says she thinks she’ll do well. She is very stable now.

I’m just very very concerned as the original plan was another facility. And the reasons were clear. This is the complete opposite of that. I’m also afraid of losing track of her/ her falling through the system. It’s very easy to get kicked out/ run away from a group home or have things go wrong in an apartment. She could much easier than at a facility end up on the streets.

People say it is what it is and that this does happen. But it kills me as she’s like my second best friend. I’m hoping that she will have a remote interpreting device both at the group home and at her apartment so I can communicate in depth with her. As well as possibly ask to have her sign a release so I can speak with her caseworker. I also plan to visit when she’s settled in. She hasn’t been on her own since 2011 and like I said this was not the plan at all. This is like the last thing they could think of after all the doors got shut in her face. I almost feel like these facilities won their stupid point on theoretical liability and she’s forced into an absolute last resort and to me a situation that has great potential to fall apart. I’m not saying she can’t do it. I’m saying that if she were at the level of being able to live independently they would have set that up for her here rather than trying to place her elsewhere. I am very relieved she will be out of the hospital as I know a huge problem was her feeling stuck there. However the hospital does provide a measure of safety that being on her own would not. She hasn’t spent the months or even year it would take another person to prepare emotionally/ mentally for moving out. So much will hang on her ability to utilize the resources available and her ability to make good choices is compromised by no fault of her own when her symptoms become more active. Which is why she wasn’t put on track for independent living.

As I said before feel like everyone who denied her services won as in the professionals and she were forced into a last resort situation that is not really matching the level of care she needs at all. The fight is not over.

hard night last night and long day today

Hi everyone,

So didn’t post yesterday. It ended up being kinda long. Went to bed with a ton on my mind. And this other nurse who normally isn’t on our floor and who is very slow with meds I don’t think gave me my ativan. Which is what puts me to sleep at night.

So itched my dry skin with those mystery spots that are still there like crazy. Was hot and then cold and then there were weird wind noises and building noises. With over three hundred people living here it’s never quiet. There are some real night owls here who are actually up doing stuff at night! It’s worse in an observation room with the door open you can hear staff and others talking. But you can still hear stuff. But I think I’d hate dead silence too. Which is what’s hard I have Jess in here with me almost all day basically then at night she’s gone and I’m so lonely.

So yeah all that went on. But I’m really proud of myself and big sis is proud of me. I did not get on the computer! I wanted to. One of the things that was bothering me was an intense discussion on an online group I’m in. I likely would have gone on and looked at stuff/ just gotten more wound up about it.

I did finish an awesome book that I will hopefully review tonight.

So today I was like soo tired. Took my morning nap but even with that had trouble falling asleep. So we went to Jess’s school so she could take her test. When I am very stressed it comes out physically in upset stomach. Unfortunately this happened today. So most of the time that I was there which I thought I would be spending trying to relax and read I spent not feeling well at all. Felt better after I got a snack in me. But it took coming home with a relaxing bath and some pizza, yeah not the best for upset stomach but we have like no options around here! We need snacks badly!

Anyway I ate slowly and have been fine since. But that was hard as I was in an unfamiliar place so not my own room/ bathroom so yeah just not fun!

It’s also been awhile since Jess went to the hospital that we’ve taken the trip to school. It might not seem like much but it is a lot to get ready go out sit in a place that’s not my room/ Albany and then come home. Dealing with whatever happens on the van each way other things that come up ETC.

So yeah I’m hoping tomorrow I can just chillax central. The one stressful thing tomorrow is another anna session. I wrote Jonathan and said does this woman take laps around the building all day to burn off energy? LOL! But seriously told him my observations. So I’m sure we’ll have a good talk Friday.

But anyway I’m just gonna tell her to stop saying things like how did I get over/ overcome/ get past my mental illness! Because I haven’t. I’m managing it. Which I, Jonathan, and others I know with MI feel. That it’s like any chronic illness you hope for as long periods of good times as you can get. But you can’t just turn your back and say you’re done. Nor do I / Jonathan feel you should. It would be not respecting the power this thing can have if you just think it will never come back. Mental illness is an extremely powerful experience that brings positive and negative things and shapes you. I feel like saying I got over my mental illness, or overcame self-harm would be dismissing something that’s help shape me and my life. And if this woman really believes this, that I/ anyone here gets over/ overcomes/ gets past anything she doesn’t understand mental illness. I will try to be open minded and give her the benefit of the doubt that maybe she doesn’t truly believe it and it’s just someone who never has experienced this before in her life just trying to wave her magic wand and say you’re all better now! But I have this sense about people. And she’s incredibly transparent, I’d say to an unhealthy degree. And I have a feeling she does believe this. But I’m gonna really try to let her say her side of the story after I’m done talking and actually listen. Which is very hard as it’s with someone I don’t really trust at all.

Thank goodness for Jonathans! The world needs more of them.

But other than that am just chillaxing. Will be happy to have my ativan tonight. Can’t believe I let him get away with that. You have to make sure to check your pill cup before you take it all. Because if you say after oh I didn’t get something like they can’t prove whether you did or not and you could just be saying that to like zone on more drugs/ give drugs to others. So I would have had to have someone give me it on night shift which would have been after eleven. So yeah it’s just a mess. Especially with no Jess in the room. I’m pretty sure she would have got me to sleep in an hour. When she comes back to the room full time we’re gonna get cupcakes or something!

long stressful day

Hi everyone,

So had a long very stressful day.

There were a couple of good points. One was I got in touch with a woman who loves reborn and realcare dolls. I’m going to post her videos on another quick post I will do basically trying to summarize everything I said last night about accessibility and the dolls as it was so long. And to give more thoughts on how the dolls could be more realistic.

Bugt anyway it was nice to connect with her. I think I overwhelmed her with my Sammy excitement because she sent me to her FB group but that’s ok LOL!

She does a great job with her videos. And did say that she totally agrees about the value of these dolls for people with disabilities.

Then I contacted the Chicago Ombudsman. Hoping he can cover a wider area then the Evanston one, actually I know he can. Copied the social worker on it as I do all communications and he, the social worker said that I wrote a well constructed letter! It made me all warm and fuzzy inside.

Other than that I fed my babies late and they were not happy. The preschoolers didn’t get fed anything til like four. Freya got a bottle at like ten and I forgot Isa was even in here. But they still love me! They’re all laying on my bed playing with their toys. They have to share the one pacifier which is sad and probably not very hygienic.

Anyway the rest of today was not good at all. Got my period early ugh! At least it will have got going a bit before Wednesday which is when we’re going out to Jess’s school. But no wonder I’ve been extra super drained the last few days.

Next major stress. Apparently the admin office was paging me all last week and we never heard it. When you need to hear the pager you can’t. When it’s something stupid it’s full blast. But anyway found this out at lunch when I was already feeling like I couldn’t move and wanted to just sleep on the table like some residents actually do. Oh food sucked today by the way.

Anyway the minute this one woman who works in that office said I had to go in there I was like high anxiety practically crying because if you recall the last time I was called in it was when they didn’t realize for months I was off on my rent!

So got in there and was like crying when I got in. So apparently when you send a check to Albany it doesn’t actually go to them directly it goes to some cashing center place first. So it didn’t make it to the cashing center. I vaguely remember someone in that office asking me mid December that they couldn’t find my rent. So I sent them the confirmation that I paid it. And then heard nothing.

Needless to say I wasn’t prepared for someone being on the phone with them on speaker wanting my account number! Yeah like I have that floating around in my head! I was like could barely talk. Could barely say yes at one point. They were so upset that I was upset because I guess they felt bad. But them saying not to cry just made things worse because it gets my ptsd going and I generally wanted Jess to pick me up and carry me upstairs.

So they’re going to re-issue the check. I guess that means send out again though they’re not gonna charge me. It’s so weird because I guess once it gets to that cashing center they check the thing so it will go through on my account. Really strange she had the check for this month in her hand at least.

I just get really paranoid too because I think in 2015 or 2014 they started this thing where Albany has to be your payee and that’s it. So I’d have to sign over my rights to my check to them and then couldn’t have an bank account that I know of because at bank of America you need to have a certain amount of money per day or a certain amount per month. The other banks around here aren’t in MA. So it would be extremely hard for my family to send me money. But since I came in before 2015 or whenever I can still do it. But I get worried about any problems and they’ll just change it.

I did get an e-mail confirmation of whatever it was they did on the phone so sent that to them plus Jonathan.

I had an interrupted nap but at least I slept. Thank you housekeeping plus someone from the nursing office. When they came to get me for that I was sure they were gonna talk to me about what happened in admins! But it was them wanting to make a gyno appointment for me which I opted out of. But I did feel better I guess after my nap.

Lastly on one of the groups I run we had a little group discussion which I won’t go into but did not improve the day.

So yeah hoping tomorrow I’ll feel better and since my period started that it will be on its way out by the minute.

felt very drained today but better tonight

I felt very drained today. I think my period might be coming a couple days early oh joy!

Basically couldn’t even have the energy to read/ do computer stuff for part of the afternoon. Took two naps. My whole body feels like it’s making up for all those nights I was getting very little sleep and all the stress I’ve been under with MayAfter my second nap I felt a bit better. I was gonna go down for dinner but both Jess and I decided to order out. It would have been basically a fruit plate so nothing I would really eat. Plus I was so tired I was kinda emotional.

I felt a lot better once I took my bath. Then we had pizza even though the driver was like an hour late.

I feel much better and think I just needed major rest.

Of course today I spent time caring for my kids. Lexie and Allie ate baby food, serial for breakfast, turkey and pumpkin pie for lunch, and chicken and veggies for dinner and apple crisp for dessert. They played with their plastic blocks, rubber and plastic ducks, and plastic rings. Freya and Isa got bottles several times a day and mostly slept.

So I’m feeling relaxed tonight. Probably will just read tonight on kindle as I haven’t done that in awhile. Then tomorrow starts another week. More  May stuff. Though maybe I can not go so all out I don’t know. This is ridiculous. It’s wearing everyone out. Why can’t anyone, besides me, hospital social worker, Jonathan, people close to May, people with any common sense, see how truly crazy this is? I’m hoping for a breakthrough this week. I’m sending the Chicago Ombudsman an e-mail tonight. I did write Linda Peterson the author of Raising Five Kids with Disabilities and remaining sane, book and blog. She has a deaf daughter with severe mental illness. She lives in NH but I’m contacting anyone I can.

Part of me wants a breakthrough, needs one. But I’m also not expecting it either. So we’ll just have to see. ,

Real care and reborn babies a step in the right direction for people with disabilities

Hi everyone,

As I said before part of my recent doll phase is about accessibility for people with disabilities. The first part is the disabled dolls which I went over yesterday.

When I googled electronic dolls this link came up

http://www.ebay.com/bhp/baby-think-it-over

So people know the Baby think it over, or now called Real Care babies are made by a company called Reality Works.

http://www.realityworks.com/products/realcare-baby

A long time ago when kids took sex ed class they had to carry an egg or a bag of flour for a week. To somehow simulate the responsibility of caring for a baby. Really dumb! Like just totally stupid.

This doll, while by no means perfect, is a good step in the right direction. It’s actually pretty high tech. The teacher programs the dolls so that the kids can’t shut it off at all. It’s programmed to cry randomly throughout the day and night for care. It can cry for things like feeding, diaper changing, rocking, or fussy crying and being unable to calm it down.

There are sensors throughout it’s body that you put a key to and it beeps to let you know you’ve done it right. And sensors that register motion. To change the diapers there are two with a different color square on each and it senses when each one is switched out.

A whole program comes with the doll talking about all of this, as well as things like what clothes you put your baby in for what kind of weather ETC.

It’s supposed to teach teens the responsibility of having a baby. I haven’t done extensive research on this but heard when asking about it in an FB group that there was a study talked about on NPR. That said that kids who’s schools did the program were actually more likely to become young parents. I don’t know why this backfired. But as a real life story one of the women in the group remembers the program being done at her school and four girls that participated. I think all of them had kids at around 19 or twenty, and multiple kids by late twenties.

Someone said it could be that the program actually gives the teens confidence on how to take care of a baby.

People pointed out of course that the best experience is real life. DSomeone’s school had a daycare attached and teens would work there. We did too. A preschool. And kids who took a child development class got to work there for a semester.

Someone else pointed out (one of the people from the bag of flour model) that when he was growing up, he’s an older guy with grandkids, families were closer and kids had experience with babies and young children from a very young age. They naturally learned everything they needed to know. Whether this translated into actual common sense or effected their decisions around being young parents I don’t know.

He said now families are spread out and have “1.8 kids” LOL, and so a bag of flour or a doll is better than nothing.

I tend to agree. However I’m looking at the doll in a different way. It’s safe to say people with disabilities, in general, don’t have as much experience around infants and young children as nondisabled people. Which is truly truly sad. On that same FB group two women said their school had the program but the teacher refused to give the girls a baby! They were afraid they’d break it or couldn’t do it. What a horrible message that sends. Sorry I don’t even trust you to handle a doll. Or you have a disability how could you be a parent anyway?

Though now it’s against the law to take a child away from its parents solely based on their disability. Supposedly. With the trouble I’ve been having getting service providers to work with someone intitled to services with an additional disability (which is also by the way called discrimination and against the law,) I’m not so trusting about the reality of what is and isn’t protected under the law with this population.

So in theory it’s against the law. But in practice, you don’t hear about very many programs for parents with disabilities. My awesome friend who recently passed away, Lavonnya was a disabled parent. She and her boyfriend and friends somehow made it work. Whether they had social services at their door I don’t know. In Cathy Glass’s book Can I Let you Go? Cathy looks after a young adult with FASD. When she wants to keep her baby the plan was to have her stay in a mother and baby unit, one with nondisabled mothers, and she’d only get support for about two years. Though Cathy and her family and social services and the girl tried their best, she ended up deciding that there was no way she could manage the responsibility and gave her baby up for adoption. Some say this was the right decision all along and were frustrated with Cathy and social services for even allowing her to try. But I finished that book filled with anger and sorrow for the family I strongly feel could have been had the right services been in place. In an environment of her true peers, other parents with disabilities, I believed this woman could have thrived and grown confidence because others in her exact set of circumstances were doing it and making it work. With periodic and long term support, whatever that looked like, weekly case management even someone coming daily for several hours, I believe it could have happened. But the funding isn’t there because again if you can’t trust someone with a doll you obviously don’t think there’s a need for such a program.

A huge part of many day programs, for developmental disabilities, mental illness, and perhaps others is around daily life, relationships taking care of yourself ETC. Why not use the realcare babies as part of that. As a way to just on a basic level talk about childcare. There might be people with the desire to have children or at least work with children. Which I feel should be encouraged and accomidated within the person’s limits and of course safety of everyone. It could teach a sense of responsibility for something other than yourself, , some people with certain disabilities are held back from even having a pet and this could be a good start. It could teach nurturing and the rewards of caring for something totally vulnerable and dependent and watching it go from a state of upset/ distress to calm and happy because of something the person did.

So I believe these dolls can be an educational resource in a new and creative way.

If this were to happen I feel the design/ programming would need to be a bit altered to account for various disabilities. For example the one thing I know is not accessible to a blind person would be the programmer box. It does beep when you press the buttons and as I said before, when you turn the key. All they would have to do, and it’s not a stretch with current technology is put in voice guidance software so that the whole thing would be able to have instructions spoken. But of course it would also be locked if the babies were a part of an actual program. So that people couldn’t actually shut it off. But in general this function I feel would be necessary. As well as phonts/ color contrast for the screen. I’m not sure what would need to be changed so that it was accessible to the deaf. It does have flashing lights for different things. I would assume vibrating when it cries for care to alert the person.

The doll and everything that comes with it, bottle ETC would need to be easy to hold for those with physical disabilities and a part of the program added in about creative ways to handle physical challenges around care.

For people with developmental or neurological disabilities perhaps the changes would take place not on the doll itself but in how instructions are given and the program is taught. It could be tailored to their level of understanding and perhaps be taught at a speed they could process.

I feel these changes would be easy to make and that if one program did it others would follow. If one person with a disability got to experience how to hold a baby, and then later say had the confidence to hold a family or friend’s baby and be able to experience that sense of joy and connection it would be worth it. Furthermore, if people like the person in Cathy’s book got to raise their own children in a way that works for them that would be like a million dollars worth it!

I don’t know much about reborn. Except that thety’re very expensive and popular in the last couple years. Here’s a site on them.

http://www.reborns.com/

They’re apparently beautifully made so also cost hundreds of dollars. They look and feel like a real baby. So could be good for having a quieter example of how to hold change and feed a baby without the added feedback of crying, at first, so that things are learned on something even more forgiving to mistakes than the real care dolls.

I don’t want children of my own. More and more though I am thinking about wanting to somehow volunteer/ work with children and adults with various special needs. I’d love to be able to go babysit with Jess, who was a pretty awesome babysitter years back, and just help out. But I’m worried I would be discouraged from the babysitting course. Or even at an organization for people with disabilities, be discouraged from working with children there. People say oh that couldn’t happen! Well so far we haven’t found an animal shelter that will let me near their cats. It’s horrible but as I said above I’m very sensitive to the ways that people say those with disabilities are protected, and then how they actually are not.

In the mean time I want to continue to explore this topic around the dolls and creative ways to use them. I really want to get a doll for myself. But they are several hundreds of dollars on ebay. And Reality works it turns out doesn’t sell the dolls to individuals only to organizations. I suppose I could write saying I’m representing Albany care LOL! But the money issue would still be the same.

So we’ll have to see. Meanwhile would love to talk with others who feel similarly and perhaps I can get one for a discount or something.