my therapy session

Just came back from my big therapy session about an hour. It was very emotional and I have a lot to think about but we’re on the same page again and moving forward with continuing therapy. If you just wanted to know the results that’s what it was and feel free to not read the whole ins and outs if it doesn’t interest you!

Well first of all Jonathan was like ten fifteen minutes late in a meeting with the administrator that happened to be about fixing the guys phone which I thought could have waited. In the meantime twenty million residents were looking for him as well as staff, as well as someone stopped by looking for a job. Annie one of the caseworker says the solution to all our problems here is to clone Jonathan and I think she’s right!

Anyway we finally get in there. I had written this whole long e-mail about everything I was feeling the whole not sure if I need a new therapist, not knowing where we stand with our relationship ETC. Well he didn’t get it. He’s like oh this 14 page thing? He was teasing it was like two pages I do tend to write long e-mails.

In the beginning he said he was pressed for time so did I want to “talk about nothing” for twenty minutes (we’ve been known to sometimes have chat sessions) and then wait til tomorrow at one when he’ll have read the e-mail. I was like no way and just dove in.

I told him everything about feeling like he’s backed away from me the past months. And what all the staff have said about me being less of a priority due to doing better ETC. And just not knowing where things stand and being really hurt and angry and not sure where he stood in my life. He listened to me and then asked if he responded.

I said go for it.

He said my little survey of all the PRCS was inaccurate. None of them ever said they went and asked him why and they didn’t. And they were just trying to say things that would try to make me feel better. Because when I’m emotional I want to draw conclussions and solve things right away. Even if it’s not a positive conclusion (I’m actually usedf to that with hurtful relationships from my family) it’s better than not knowing.

He said at no time did he stop caring. He said I was the one that backed off and I debated him on that for awhile. He did admit that things got really crazy with the days off and not being able to get ahold of him and stuff. I told him all my friends who had listened and gone through this with me as well didn’t like him anymore. He said they were riht ande he could be off the wall sometimes. I guess he’s a good therapist just for admitting that!

We talked about how I went to Edith and talked forever literally months intensely about all this. And how she was the one that said the a stuff about him backing off, perhaps the more intense therapy was crisis intervention ETC. He said if he were her he would have only responded with that I should go talk to him. Which she did. I think I wore her and the other staff down by endless pestering again for my quest for any answer.

He said he had heard from Edith how I was doing and that I was hurting and upset with him. We disagree on this though I do see his point of view. Apparently he made the thought out decision that rather than act on what she said, making her like the mediator, he chose to wait me out and wait for me to come to him. He kept emphasizing that when I did finally ask to meet he responded right away. I’m like yeah but I think if you knew you should have done something. Especially as I’m sure she told you I felt disconnected. If you found me even if I was mad I would have appreciated it and felt really cared about. He said he got that and in the short term it would have solved things faster but he thought in the long term it was better that I come to him when I’m ready and bring this stuff up. And he didn’t want it to turn into me going through Edith for things.

So as I said to summarize: He never thought of me being less of a priority. He has always cared about me the same. We’ve built up this strong relationship, and he said he doesn’t know of anyone who’s better able to work with me. We talked about though how it’s hard for me to connect with other staff as I’m waiting for them to misunderstand me and I shut down.

He did point out correctly, that he never really does crisis intervention with me. We’ve talked about handling crisis, self injury. And I’ve gotten wild in his office throwing stuff ETC. And at that point he’s called in staff and they handle it. Which is true.

So we’re back on track. And I’m extremely relieved. I’m glad I did see him really. And so happy I don’t have to put myself through the whole trying to work with a new therapist thing and have him there. I still question the wisdom of his decision not to seek me out. I wonder if I ended up self injuring or going into a crisis if he would have done differently. But I do see his point.

Anyway that’s all she wrote. Thoughts? Have you had similar experiences with therapists?


big meeting with my therapist tomorrow

Hi everyone,

So you all probably remember me talking about my therapist Jonathan Eastmon.

To review, Jonathan EAstmon is the clinical director of Albany care where I’ve lived since November 2013. He is an amazing clinician trtuly rewspecting each person as a human being and finding flexible ways to work with pretty much everyone. He tries to guide the staff towards his same way of working which makes Albany as warm and caring as it is. I still wish there weren

T hundreds of people living here. And because he truly cares about the residents being as happy as possible he really wants to help us with like everything. From problems with caseworkers to issues with computers and other things, he also happens to be a tech wizard and is solving tech problems all over the facility. He’s great with working with all the staff that come in and out of here and like I said you couldn’t ask for a better director of this place.

When I first came here I had absolutely no interest in therapy. I was so suicidal and barely wanted to live and thought therapy would make me worse. I was really self injuring a lot and this put me in power struggles with the staff. After a couple months of this jonathan burst into my current PRCS office sat dowsn and said that he wanted to talk about my self injury. And that he wasn’t gonna tell me to stop. So we talked about it for like two hours. And came up with a care plan based on harm reduction and one of the conditions being I see him for therapy. He said I could think of it as chat sessions not therapy if I didn’t want to.

Whatever you ccall it it was really hard opening up to him and learning to really express my feelings talking about every self injury incident that happened and stuff. I tested him a lot in the beginning to see if he would really be there for me and he passed all the time and as we talked about everything our relationship grew. It’s him I give credit for for putting me on the right path to getting my SI under control. I loved having him in my life to depend on and connect with.

Over time he’d have some crazy scheduling problems. One quirk he has as I said is he truly wants to help all hundreds of people staff and residents here that he’ll say he’s gonna do something like meet with you and then not be there. I’d sit waiting and he would be nowhere in sight. Often no one could get ahold of him or I’d hear at the last minute that we had to reschedule and then he wouldn’t reschedule. We talked about this on several different occasions and how upset I was. In fact at first him missing a session would send me into crisis, I’d scratch just to spite him and not talk to him for two weeks. Over time I became better able to cope with it and more understanding but that had it’s limits especially when he’d say he’d reschedule and he didn’t.

I had a big argument with him about this time last year and we made this whole agreement that he’d give as much notice as possible before missing a meeting and he’d reschedule within that same week. This lasted like for maybe one or two misses but not longer than that. Over the past six months or so things really changed. For awhile he’d backed off on responding to phone or e-mail contact though I was always able to do so. I knew it was because I was doing better and connecting more with staff mostly Edith. But it seemed like more and more our individual meetings became less of a priority til I wondered often if they were at all. I just plain could never get ahold of him. I did et mad and frustrated and a couple times during this period I did cancel on him when he finally did schedule something which is counterproductive. But that was more about in the moment feeling like I’m so over him and there’s nothing I could say to stop this from happening, since talking with staff it’s a huge fault of his and I learned he leaves them hanging too which for awhile made me really mad and still does! But anway I haven’t met with him since June for this reason.

Around that time I decided to just go and find another therapist. Not sure if I posted about Melissa this one woman I wrote who’s right in Evanston. She’s a dance therapist and seemed really nice and understanding about my financial situation me being blind and just over all situation. She agreed I could come for $10 and my mom agreed to fund this. Right up til I was gonna meet with her I just got so overwhelmed with starting a whole new therapy process. Not so much telling my story which I’m good at but opening myself up to make that connection to give the person a chance and to work through all my little quirks and see how acceptintg this person really is. It takes patience and a certain kind of openness to work with me. I wrote her and she said she understood. I said I was particularly sensitive and I explained the Jonathan disaster. She said if I chose to see her she’d be there for the long term and I could contact her anytime.

So I guess that offer is still there though it’s been months since I asked my mom about paying for it and not sure if she will or not. Sometimes she says money is fine and sometimes not so I don’t know.

I had planned when signing up for some groups either with trilogy or thresholds the two big organizations around here, to ask for an individual therapist. A woman from thresholds is coming the middle of this month to talk to me about their services. This would be free due to them taking Medicaid. Part of me thinks it might be good to see another therapist outside here and get a new perspective. Edith agrees but says it’s up to me. We’re both kinda amused because right now she’s basically my caseworker and therapists. And she says I don’t listen to anything she says anyway and we just laugh about it because in spite of that she really does help me. She has my same sense of humor and is really overdramatic with expressing herself and it kinda reminds me of Deborah from MA and it’s just funny. She’s my one huge connection here. If she leaves she’s taking me with her.

Anyway so Jonathan is finally back from vacation. And so I decided before deciding whether to see another therapist or not I’d talk to him. First of all clear the air with all this stuff about him pulling back from me apparently due to me doing better, yet he never discussed this with me, and there needs to be a balance because when I don’t hear from him at all I feel he doesn’t really care at all. Talking about all this will help me figure out if we really can keep going with therapy again. Which I’d really like to do actually because it would bew so much emotionally easier to do that than start a whole new relationship.

My friends say I should clear the air to get closure but that I should go with a new therapist like Melissa. That Jonathan will just back out again get caught up in his work and not be able to see me and how hurtful that would be. I think if I’m gonna do this I have to accept that this is a huge quirk of his that won’t change anytime soon. I mean if he does the same thing to staff than it’s not about me being a resident or anything it’s just him. So I guess I’d have to just know that as it has before this issue will likely come up again. If I can figure out the whole why he backed off in the first place, minus the scheduling thing, I’d at least know he truly still cares even though I am doing better emotionally. I feel like being able to accept this is easier than trying to work with a new person and the damage that would cause. From everything from understanding self injury/ the harm reduction plan I have, to my relationship with my best friend and older sister (adopted) Jess. All outside professionals when they hear about our relationship automatically albel it codependent or say I have poor boundaries. That was pretty hurtful. Jonathan and staff here know both of us intimately and how it was we became friends what our stories are and the ins and outs of our relationship, and basically that though there’s always room for improvement it’s more healthy than unhealthy and we couldn’t have gotten this healthy individually without each other.

So tomorrow is the day. I wrote all this out in an e-mail to him as I often do. First to remind him of our appointment. By the way, even when he puts something in his phone he’ll still forget! And also to let him know what I want to talk about so he can really think about it. I’m hoping this will go well and we can start fresh whether I see someone new or not. Jess says maybe I could do both which would be interesting. So yeah I’m really excited actually. And hopeful.

long term care for people with mental illness plus self injury

Many people might not know anything about what I’m gonna write about but I’m gonna write about it.

Self injury, my definition is the use of physically inflicting pain on oneself (cutting, burning, scratching ETC) in order to cope with emotional pain. This means different things to different people, and each case of self injury is as individual as each person’s experiences of the symptoms that accompany it usually anxiety, depression, sometimes eating disorders PTSD ETC.

Self injury is most commonly by the everyday person thought of as occurring mostly in teenagers. And that does happen a lot. It can happen to people of all ages both men and women.

There are still even with all this, a lot of therapists doctors and other p[rofessionals who don’t understand self injury at all. They can’t even begin to get their minds around the fact that someone could purposely hurt themselves and cause in a lot of cases extremely visible and deep wounds to their body, at the very least pain, and that this is helpful in any way to them. It just baffles them. Others take the tac of assuming it’s for attention. And yes one thought about self injury is that some people do it to show others what’s going on in the inside their thoughts and feelings through cutting ETC. That doesn’t mean their drama queens or anything. The emotional pain and trauma behind the behavior is still just as deep whether you’re doing it for attention, a term I hate, or not. It’s most commonly in this sense thought of as then being a part of borderline personality disorder. Which while part of that official diagnosis isn’t always the case and furthermore people with BPD I feel deserve a whole lot better treatment than they’re getting. I don’t have this, but from watching friends that do deal with professionals, or a pforssionals reaction when I tell them a friend has it and I’m looking for help for them, it’s like OMG BPD really? Umm no. Like it’s too much trouble than it’s worth or like the person that has this is somehow now not worth caring about, and will just self destruct anyway. Sadly that’s truly the deep feeling this one friend has, that professionals all her life have just said she’s doing it for attention so don’t take anything seriously and just brush it off. Which is why I hate the term doing it for attention.

Then you have psychiatrists that say you’re3 doing it because you must be hearing voices. Like that’s the only thing that could ever push someone to do this to themselves.

I was lucky to find Jonathan, and then how he got the staff here at Albany on the same page about all this. That it’s a coping mechanism and should be respected as any other coping mechanism and talked about easily, the same way you’d talk about drugs or alcohol or someone who has sex to cope emotionally etc. Like it shouldn’t be this huge elephant in the room that people can’t talk avbout. He tries to keep explaining to people the psychology behind it to have it make more sense. And he’s done a good job here with my friend Jess and I. We both have a history of self injury. We both do it differently physically and have vastly different emotional reasons.

The problem became when I got another friend who deals with this except on a more severe scale. It was then I realized how limited your options are at least on Medicaid. I’ve seen wonderful sounding residential treatment centers, outpatient clinics ETC that deal with this issue. And despite the misconceptions there are more and more therapists now finally getting it and learning how to treat it, mainly with DBT but there are lots of proaches as with any issue.

The problem is nine times out of ten even the really good therapists, who are in private practice, don’t accept Medicaid. I actually think it’s more along the lines of they can’t apply to be on Medicaid or something crazy. Like in IL I guess an individual in private practice can’t apply to be on Medicaid however I have seen some individuals listed who do take it so I have no idea what to say about that.

Certainly the residential treatment options and partial hospital programs are out. Alexian brothers has a specific department for self injury recovery. They wrote an awesome book Self-injury: simple answers to complex questions. Sadly reading the book is as close as I will get to knowing their program. Being a free standing behavioral health hospital they can’t be on Medicaid either. I guess the pattern here is somehow changing policies (like that’s gonna happen anytime soon I know!) so that more places are able to take Medicaid. In IL in particular it’s really hard.

So someone like my friend who by the way is in a wicked small town in IL where there isn’t even really public transportation, really doesn’t have that many options. She’s kinda stranded at her house and can’t drive so she’s at the mercy of someone being able to even take her to like get her meds and to a psychiatrist, which sadly sometimes doesn’t happen which partly is the issue her body not getting meds regularly. But even if she were in like Chicago where she didn’t have the transportation problem. She still wouldn’t have a ton of choices in a therapist. When I went to turning point in Skokie which is clearly their one community mental health center, I found out they’re most uncomfortable with this topic. Claiming they don’t have the specialized training to deal with it. That or eating disorders, or adictions that aren’t in late stage recovery. These are serious problems that I’m sure a lot of people in the local area have to deal with. It’s so sad to me that they can’t get the training get therapists in there that can do it. They had one DBT therapist but she wasn’t even willing to talk about it in group. It wouldn’t be a problem if you had like at least a couple other options to go where you knew you’d get solid care on it.

There are good places that can treat this stuff. They’re just not anywhere near affordable to people on Medicaid, it’s like we don’t even haqve half a chance on it.

Moving on…

I think the problem becomes even more comples when you look at people who for whatever reason only have stability living in some kind of residential setting be it a group home or intermediate care facility or somewhere. This has been the case for Jess and I. For whatever reasons there’s no way that we could emotionally l live elsewhere. Neither of us, for our own reasons have much support from family and friends. And neither is emotionally ready yet to live on our own.

We’re very lucky that we both ended up here with the extremely skilled and flexible Jonathan Eastmon as clinical director. It took some doing as both our cases are very different, and I think ours is like one of the first times that they’ve had to tackle self injury. But they did it and we’re both doing pretty well.

The problem I think is when the issue gets more severe. And I know each case is different and I’m finding that even here they’re not skilled enough to handle certain things. Like people using certain objects and things to cut that could easily be sneaked in here and just the level of physical injury that would cause.

So all these places that normally take people with all kinds of mood disorder, anxierty, psychosis issues are not able to take on this problem. Over time I’ve gotten very frustrated with all the people saying no. And I know that’s not the way to go about it because they aren’t doing it to be mean. It’s just something they can’t take on and are probably afraid of doing more harm than good.

I don’t really care about the number of places that can’t do it I just want to know what places can. And I’m having a hard time finding that out. Again there are specialized group homes and things like that for this but again no Medicaid.

Jonathan said he’d make some calls. I did find one place another ICF that would take the level of need but I actually don’t know which hospital my friend is in in order to get things set up for her.

Jonathan said some of the places that would take this issue of self injury I wouldn’t want my friends to go to. Which scares me to death. It sounds like jail for people with mental illness or something.

I’m wondering about people in other states since I only know IL. Though I lived in MA all my life, I had my breakdown before I left so I don’t know anything about the mental health system there. I’m curious to hear from Medicaid folks if possible. What your experience has been with finding care either outpatient or inpatient/ residential that can help with this since apparently it’s so specialized and so many of the places that deal with it are either private insurance or private pay. I’m really interested to hear about this because it’s important to me.

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Book Review: Little Prisoners by Casey Watson

This past week I read another amazing and heartfelt memoir by Casey Watson.

It describes her work with her third foster placement, a sibling group that’s placed first strictly as an emergency placement. The watsons just step off a plane from their vacation after their second foster Child, Sophie left, when their link worker John calls to inform them of two children taken from their home due to extreme neglect. They’re a brother and Sister, Ashton and Olivia, six and nine. Social services got a report of them being dirty and unfed and of the parents with learning disabilities unable to take care of them. They also have three or four other siblings younger than Olivia.

At first Casey and Mike are unsure about taking on a sibling placement. They also know that this wouldn’t be the work they signed up for, as they became specialized foster carers doing a standard behavioral modicifaction plan. However as specialized carers, it seems that they’re often refered to tak on children other mainstream carers would not.

Within just a day Casey informs her whole family, her young adult son and his girlfriend, and her daughter who has two children of her own and her husband. And they’re all in support of this decision.

When Ashton and Olivia arrive with two social workers the level of neglect takes the watson’s breath away. They describe Olivia’s hair as so covered in lice it looks alive. Both are dressed in extremely dirty clothes casey can’t even imagine using for rags. They are extremely thin and underweight and their skin so dirty they can’t actually see the white of their skin it’s all incrusted with dirt.

They only come with a few things, just as dirty and unusable c lothes and an extremely dirty but loved large doll that Olivia is incredibly attached to called Polly.

The first task is to get the children properly cleaned up. In doing so they find open and scabbed sores all over their bodies, and dirt so stuck between ashton’s toes it first appears they’re webbed.

Once this is done as well as a large amount of lice removing shampoo applied the children seem a bit more happy and normal looking.

A problem that shows itself on their first day and that continues to become worse and worse throughout their stay is their sexuality. Olivia asks to sit on Casey’s father’s lap and when he gets uncomfortable with her movements around his private area she says she’s “ wiggling like with grandad.”

This is unsettling but nothing compared to the pattern that continues. Both Olivia and Ashton treat sex very casually and as a normal part of life. They’re often found touching their own and most unsettling each other’s genitals at meals or just sitting doing stuff. The first time they’re told about how our private parts are private they say , “but it’s ok with family right?” as in that the touching, sexual play ETC was just a part of family life.

It’ sickening to mike and Casey and they don’t know any way to really stop it. Constant teling them this is inappropriate just goes over their heads. The only thing to do is watch them like hawks and even so a lot of sexual acting still happens between them like it’s a normal part of life.

Another issue that’s more disgusting in a physical sense is their toileting issues. The two of them even Ashton age nine, often go to the bathroom in their pants and wet the bed. As well as do a pretty good job of covering surfaces/ themselves with it. This leaves Casey with a lot of cleaning to do, and for her it’s extremely more anxiety provoking than most as she’s obsessed with cleaning. Needless to say it makes for an unsettling environment. The two can’t seem to help it. Olivia does make a point of doing it increasingly when stressed smearing the walls, and even going poo on someone’s front lawn!

This is something over the course of their stay Casey and Mike try to improve. They even use the points system though not formally and this seems to give them some incentive. They also want to do well with it as they’re starting a new school. School seems to go well. The teachers getting a clear understanding right away of Ashton and Olivia’s learning needs as they’re quite behind in school not surprisingly.

As time goes by it’s apparent that this isn’t any emergency placement and that the children are there for the duration until a court hearing when they’ll likely be placed in long term care or adopted. The Children’s social worker Anna is pretty ineffective. In some ways her hands are tied. For example, in the UK children in care can’t start with counseling until it’s decided where they’ll be long term. This is I guess to prevent any sudden changes

In counselor if the child is moved from the area based on the results of the hearing. However this leaves Casey and Mike, mostly casey as she’s at work all day, with children with very serious issues mainly sexual acting out beyond anything the couple can even think of how to best treat. At one point Anna says something really condescending like “I know it must be very hard. Poor you.” Seriously?

While the children are there casey is determined to try to give them some kind of childhood experiences that they never had. Instead their world was filled with horrific repated abuses that both are convinced is normal. Casey and the family go on holiday and have a wonderful time. The whole experience of going somewhere and having fun is so foreign to them. There was of course a minor meltdown when Casey discovers that the children were told by social services that they were “going on holiday” when they were actually going into care and the watson’s weren’t notified of this. Learning they were in fact in care did set the children’s progress back a bit. But they made gains again and by the time the actual holiday came they were in good spirets about it.

They had never been to the beach and were overwhelmed at first by the feel of the sand/ water. Eventually they warmed to it, though mike at one point had to dismantle a couple sculptures of sexual body parts! They celibrated their birthdays, a week apart, on the vacation as well. Towards the end of the vacation Ashton opens up to casey that he was made to “do sex things” with his baby cousin and how he hated it. When told they’d have to tell Anna he shut down even more and became angry and closed off. Trying to rebuild a relationship with him after that was very hard. He being older, seemed more disturbed than Olivia for all her issues she seemed able to adapt and relearn things like about how this sexual stuff wasn’t right at her age. A psychologist who near the end of the book evaluated the children confirmed that Ashton being that much older was more disturbed, in danger of becoming a sexual predator, and had a psychological profile identical to his mother’s.

As the court hearing draws near and is completed social services decides that the two should go to separate long term carers. Many carers will not take a sibling group, and the two of them together particularly ashton’s influence on Olivia was doing more harm than good. When told, as with some other things in life that Casey thought would traumatize them, ashton and Olivia took it quietly. Of course their survival tactics with growing up with so much abuse and unpredictability in their young lives was to numb out on their emotions.

Olivia was found a lovely couple on a farm and it was the perfect placement for her. With lots of room to run she had a lot of energy, part of which was due to her ADHD, along with being able to play with lots of animals. Including a puppy that the social worker brought with her to go with her to the farm so they both could be new members. When leaving Olivia barely said goodbye to Casey and Mike as she was so wrapped up in the new pet. John said that’s the nature of attachment disorder.

It took a bit longer for them to find a place for Ashton but they did. It was a couple with no other children who Ashton did seem to like.

Casey and Mike were forever affected by these two incredible children, the horors they went through literally being prisoners in their own home, and their strength and how much they did heal while in their care. The epilogue said a year later both children were doing very well with their new carers.

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I’m back from having a cold this week

Hey everyone,

Did you miss me? (I expect to hear a lot of yes/s!)

Well I was out this week with a cold. First one in two years. The two years I’ve been at Albany care with around three hundred people in close quarters who some of which don’t have exactly excellent hygene to put it mildly and without going into too much detail. I think my immune system adapted though because the first month I was here, being between the end of November, moving to a place with above mentioned individuals, still wanting to die ETC I got two colds in a row.

But after that I was cold free. So Sunday had a sore throat. Which is always the preview to a cold. Which really sucked. Almost all other days I don’t have a thing planned. This past week though Jess and I had two things planned.

One was to go tour Belmont crossing and see what their facility has to provide. We’ve scheduled this tour so many times and now will just add to the list I guess. They’re very understanding people and so we’ll just reschedule again.

The other thing was Tuesday night. An inter play meetup workshop. Inter play is a creative arts system that uses movement, voice and storytelling. This would be Tuesday night at a local church as the venue, nothing to do with church at all! Anyway it would have been my first night going out for any kinda social activity at night literally since moving here! I had psyched myself up to be ok with Jess and I taking our meds with us and asked the organizer Jeff everyquestion under the sun which he patiently answered. So I was both excited and anxious. But Monday I felt terrible. Wanted to tough it out and at least do Belmont but right after lunch was completely overwhelmed leaning on Jess’s shoulder and being the big sister she told me I wasn’t going anywhere. And for the past few days has kept me resting hydrated and eating like a big sister should!

So I’m finally feeling well enough to blog. All week I wanted to write. Have finished a couple of books to review but the thought of sitting and typing was too tiring. Plus probably due to the cold and my body kinda dealing with a lot I was dealing with mild brain zaps. Nothing like the week I had of them but just a little particularly when sitting up or stressed so yeah.

I’m sure I haven’t missed much in the blogging world. Like I said will be coming out with those reviews hopefully tomorrow or even one tonight I don’t know. And talking of other things as I always do.

I’ve been accepted for crisis textline training!

Hi everyone,

So something I’ve been working on recently is applying for crisis textline’s crisis counselor training program. Crisis textline is a branch of the eight hundred suicide organization, where those in need can text for help rather than call. Some find it easier to do this, especially younger adults/ teenagers. And for some communicating vocally is so risky emotionally, or even in a sense of having others around that might overhear, that texting might be the only way for them to get help.

Below is a video explaining this from the organization.

From someone who is deaf/ hard of hearing.

I want to thank Edith my caseworker for finding this organization in the first place. We were looking for something I could do from home as there aren’t a lot of hotlines in the Chicago area. I want something I can do onmy own time in privacy before stepping into the world of possibly volunteering in person at a physical hotline location.

The application process was pretty straightforward. Unfortunately the application form itself is not accessible to NVDA and I don’t think other screen reading software. I only know about NVDA because that’s what I use. You can see the boxes but can’t go in like with a normal edit box where you can just hit enter it won’t let you there. I have no idea on how to make sites more accessible or even how to explain to a sighted person who probably has never heard of this what the issue was.

But Jared, an intern at the organization was so patient and nice about it. He said he’d be glad to fill in the application himself. I just saved a draft for him to fill in, sent the questions by e-mail and I was done. They ask a lot of questions about your passion for helping people, what issues you would feel most or least comfortable dealing with ETC and try to really get to know you.

The next part is having two character references. These can be anyone you want. I chose two very good friends who were glad to help.

I heard back saying I’d know by the 29th. So I was very surprised when I got an e-mail from Heather Cam yesterday saying I’ve been accepted!!

I was very excited and forwarded the e-mail to like everyone. Including telling all my twitter followers.

I’m really excited to start this journey. I’m told we’ll be doing a lot of online modules but also have sessions with webcam. It will be really cool to connect with others in my training group and others in the organization in general. I’m hoping to possibly make friends/ or at least connect/ share my passion for helping others with other like minded people.

I do wonder about accessibility and if any other blind/ visually impaired people have volunteered before. It’s ironic too that I don’t know how to text at all. I tried using google voice and it plain did not work and dictation hates me so yeah. Which is good they have an online platform. But never thought I’d be helping with a texting service of any kind.

Lastly I was sent an e-mail today asking for my thoughts on a team name for my class. Don’t quite know what this is about but sounds cool. I chose the comfort Kittens! So everyone who’s able to vote for that cause it’s awesome!

Seriously. If anyone reads this and has experience volunteering and has tips/ encouragement ETC please share. Especially anyone who’s blind/ visually impaired if possible. Training starts October sixth. Will keep everyone posted!

searching for mental health residential resources in California very depressing

Hi everyone,

So this afternoon I spent a lot of time browsing the internet and on the phone to various places in CA trying to find residential living options for my friend who is still inpatient. She can only stay there for up to two weeks though. The hospital social worker, from my friend’s description, does seem genuine, is totally lost on anything residential that could be useful. Which is really sad to know she’s a social worker, versed supposedly in discharging people to various resources and she doesn’t know what to do.

In talking to my friend I found out that she doesn’t even have Medicaid because she’s visually impaired as I am, and no one will help her fill out the print forms. That’s just beyond terrible I mean that accessibility is the reason she has no medical. She does have medicare, but I guess isn’t able to get mental health services from that or they’ve given her too much of a run around or something. It is good they’ve paid for her hospital stays and meds at least. After her last hospital stay she was referred to county behavioral health but given the run around there too and no advocacy or help.

So she’s really struggling. Having her go back to her apartment from the hospital really isn’t a positive option unless she can get services basically right away.

I discovered that there really is no middle ground with residential services in Sacramento or actually the whole state of CA.

They have these board and care homes. Which from what I understand basically anyone can get a license to operate a home and have I don’t know how many people in it. They say they’re licensed but there seems to be no organization monitoring these places. My friend has been in several and all were horrible. With insects, really bad food as in not nutritious/ healthy at all, abusive staff ETC. She was actually disascharged to one after her last hospital stay and managed to run away back to her apartment. I’m kinda horrified that this unregulated option is the bulk of residential services provided. It seems there’s no real care or services in these homes at all with trained providers or anything. From what she’s said they’re out to make money, which I’m not usually that cynical but in this case it could be true. From what I’ve heard group homes in IL aren’t that great but at least they’re licensed and regulated by big mental health agencys and people there are getting services and care. It may not be the best but there’s a system in place. If I’m wrong please correct me. If anyone could point me to any solid well run board and care homes I’d be open to looking into it. I need all the options I can get at this point.

On the opposite extreme, I was looking at these places called Psychiatric rehabilitation treatment centers, nthat seemed to provide pretty solid therapy and supports for up to a year or so. I was particularly excited about one called crestwood with several locations, did that WRAP and DBT therapies and generally seemed really good.

Well first of all the woman I left a voicemail for, her voicemail recording was a lot nicer than her actual voice. She sounded bored and not that friendly. I started by saying how awesome I thought their center was and about my friend’s situation and she cut me off and asked if my friend was under a conservatorship. I said I didn’t know what that was. She said it’s a court order. I said no she wasn’t. Apparently all these nice sounding places are locked facilities where you’re court ordered to go there. I was not happy and very shocked. I guess they have to make them sound good.

It still baffles me that there is no middle ground in this system between, unregulated poorly run homes and court ordered locked placements.

I did talk to one woman who was compassionate and caring. I’ll talk about her place separately in another post. She said if I found out what county my friend was in she’d give me numbers for her to get set up with a patient advocate which she said is the starting point to navigate all these services. I’m just not optimistic about these outpatient services if the residential side is this complicated, and if no one could be bothered to help her even fill out forms for Medicaid. This woman made my day though with her really cool unique approach to mental health recovery and her caring nature.

If anyone has any thoughts at all please comment. Another friend thinks the best option would be to have her move to another state with better services. She lives in Denver Colorado and says the services are better out there. I’m not sure about moving straight from the hospital but maybe if she can get set up with some kinda services at her apartment until we can find something solid in another state that could be a possibility.

I need help from California mental health consumers/ professionals: please help me understand the adult psychiatric residential system

Hey everyone,

So I really need any input at all from those living in the sunny state of CA.

A good friend of mine lives there and has been really struggling living in the community with her mental illness. She was living in a board and care home but the care was substandard. I was horrified to learn what she had to put up with in terms of poor nutrition, insects, staff that weren’t trained at all and basically in it for the money. I’d like to hear other’s views on the board and care system. I saw on a website that these places are licensed but not regulated. It seems to me that anyone can get a license and there’s no oversight.

Anyway having been in several she’s established she will not go down that road.

She had an extremely bad time lately with no therapy, meds that weren’t working for her and no money for food. She’s at a really good psych hospital that is providing for all her needs. She said she wish she could live there. I wish the residential programs they do have like in IL are as nice as some hospital units are. Then again some hospital units are terrible and for all the downsides of Albany I’m very happy to be living here compared to there!

Anyway as the board and care places were listed as level two she was under the impression that there would be a level three, a long term option with skilled staff and proper treatment all at a residential level. Similar to the care I and others at intermediate care facilities for psych issues receive.

According to her social worker, who from my friend’s description is truly genuine and trying her best, she’s never heard of a level three anything in the state of CA.

The only option as this person sees it is for my friend to go back to her small town and lonely apartment with no care at all to just continue to struggle.

I am a skilled researcher and advocate hard for people. But this system has me extremely confused. Here’s info I found on the CA mental health website.

If you follow this link there’s descriptions of several levels of psychiatric residential care. But it’s not clear to me which is which and who qualifies and most important which one is truly the most long term which my friends needs as a form of stability in her life. Many places that seem really good are only available for stays of six months. I can’t find anything for longer though even then thestay isn’t always clear on the website.

I suppose I just have a lot of calling to do. But I will provide a couple links and tag these organizations in this post in hopes that those who have experiences with the facilities can vouch for how good/ bad they are, and give more information about referral process length of stay etc.

Crestwood behavioral health

It seems like a really good place particularly with the types of therapies used WRAP and DBT and just the description of everything. My friend’s social worker said she thought it would only be for six months though. If anyone works or has been there I’d love to know about your experiences. Also most important if it takes Medical? As these places are under department of mental health I assume they would.


I know this place says it’s a locked facility. But they make it sound like a pretty nice one, with a clear level system and a lot of support to get out to a better level of care. I just liked the information provided about it it seemed encouraging.

Other than that can’t find anything else useful.

There are also things called skilled nursing facilities which I guess are nursing homes. I don’t know if there are any specific for psych issues which is kind of what Albany care is.

Like I said I’d just love if someone compassionate and knowing about this stuff could help me through the maze a bit so I can help my friend get the best care possible.

It just saddens me the number of places that are so low quality like the board and care homes. I don’t know if these are the only options for those needing care in the community but not able to live alone. I’m incouraging my friend to pursue something like the crestwood center. If it is six months it’s six months of her being in a safe place getting good care and maybe the team there could refer somewhere else.

I so wish the path to getting good care for those that are qualified and so struggling without it was clearer and easier. It’s just not and probably won’t be unless there’s a bunch of people working really hard to change policies/ get funding which is a huge battle.

As I said any info at all from anyone who understands this system of care I and my friend would so appreciate it. The hospital can only keep her for up to two weeks and I’m hoping we can find something before then. All thoughts are welcome.

took today to recover

Hi everyone,

So today has been a good day for me. I think everything from over the weekend caught up with me. As I was super exhausted anxious and emotional. By lunchtime when the chaos of the cafeteria became overwhelming I decided to skip out on the Walmart trip and have Jess go for us. She’s done this many times as I often find the van crowded and being with certain loud residents for even a little while wears on my nerves not to mention the crowded store.

I slept til two. I think I needed it. I know I really just needed the rest as finally Jess seems to be in a more stable place I don’t have to be as on guard about her emotional state and worrying about her having to be hospitalized.

It was so exciting to see Edith again!! I have incredibly missed her. We had our usual long talk just so nice to sit with her and be relaxed in her calm informal demeanor. She listened to everything that went on. She said as she always does in a joking way, that now I have a new PRC to hate. There were several staff on the caseworker department that I did not like at all when I first moved here and would refuse to talk to. I’d rather be quietly in crisis then getting their unsupportive would make things worse help. They either loved paperwork more than working with us, or just didn’t know how to work with us or were just wicked off. This one guy lance still works here, I don’t like him just because he’s way too silent. Like hardly says a word what in the world would he do in a crisis? He must have very low need clients. Anyway these other ones were worse. So anyway they left. So for a couple months I haven’t had any PRCS I don’t like. So I guess it’s refreshing to hate one. I do sympathize with Kari’s position and having to follow protocol. For example as crazy as it sounds those DVDS will be continually taken away in room search after room search. Because a PRC who’s making sense of the situation and not just purely following the rules will let me have them, even Jonathan oked this, but a more strict by the rules person will take them away. Same with my shell. So anyway. I get that but she is kinda bitchy and I don’t trust her. So yeah.

We talked a lot about the Jess situation. I was able to talk for the first time during this whole thing about how I felt responsible for the fact that she didn’t go to staff earlier Friday. She said it was a normal feeling but that it isn’t my responsibility to take care of her. She said how we’re two different people and I don’t have to take care of her, to nurture her in the way she does with me but I support her in my own ways. Which is hard to believe. I just want to do the right thing by her, and make it a safe space for her to try and express what’s going on as I know that’s like almost impossibly hard for her. Trying to stay calm and not freak out, not anautomatic at all response really wore on me especially as Monday and Tuesday came around because it’s more natural for me to freak out when someone is in a bad situation at least crying and being anxious. Which I did a little, I had to be it was probably like one percent of normal. Keeping all that in was so hard. By Monday night I was at the point of wanting to scratch to release everything built up since I didn’t feel any of the staff members could really hear/ validate what’s going on for me and anything well meaning but not appropriate for what I’m going through would just make things worse. And to in a spiteful way prove that I’m not doing well when they were all saying how well I was deoing without addressing or even noticing the internal turmoil which is always present in some way or another despite what’s on the surface. Edith knows this. And it was great to have that conversation where she could say I did do well in spite of what happened internally. And that for me to feel like cutting and then have another process interfere with that (I.E realizing the consequences wouldn’t be worth it) is such a good sign and is the norm lately.

I am not going to Masonic because trying to figure my way to the outpatient behavioral health area just sounds overwhelming never mind trying to figure out where transportation is. Thresholds will have a person coming out near the end of October. And they do individual therapy. A therapist not this person. She’s from intake. I think it’s awesome she can come visit me here and I don’t have to go anywhere. I’m hoping they do general supportive psychotherapy/ DBT and not CBT because I can’t handle that. If not I still have trilogy to try and get back into as they may be allowing new clients at that time. So I’m happy with this.

It’s been good to just relax and zone out. I have some Casey Watson books, thank you bookshare! For filling my requests! To read on my braillenote plus audio books. I’m spending time looking up residential mental health care for a friend in California. That I’ll talk about in another post.

The activities for Jess and I next week will include venturing out to an evening activity, our first! To an interplay meetup session. Interplay involves creative movement, voice work and storytelling. I’ll post general info as the date gets closer and a full review after the event. Feels good though a little anxiety about just deciding to go out in spite of this messing with the night routine. Sometimes you just have to do stuff. I’m hoping this will connect me and Jess with others out of the facility in a completely new way than we’re used to.

And we’re hoping to Tour Belmont next Thursday which I’ll also of course review.

Jess says she’s ready to come back down here to stay. As long as she thinks she’s really ready I’m ready. I’m hoping this will help her realize the importance of going to staff. Unfortunately our psychiatrist Dr. Fyazz is on vacation til the 28th. The person who is covering is Dr. Dezon, the nightmare psychiatrist who ironically heads up the group that comes here. He hospitalizes at the snap of your fingers, often when caseworkers are strongly against it or without their knowledge! He also changes meds in that manner. I hated working with him. Edith says about the only group of people he’s good with are extremely psychotic patients. He somehow gets them on a ggood path to recovery and is awesome about it. Anyone else no! So if either of us are in crisis we’re telling our caseworkers and they know this to please not call Dezon. Because we would be in the terrible useless unit at st. Mary’s for a week for no reason!

So we’ll hopefully stay out of trouble tril then. I think we will. It’s rare for either of us to have two crisis episodes right in a row like Jess did. I’m so happy she’s on solid gground now and if things are good tomorrow and staff agree she’ll hopefully be back in our room full time tomorrow!

trying to find good quality therapy with medicaid is such a run around!

Hi everyone,

So yesterday afternoon I spent a lot of time running in circles on the phone looking for good therapy, or at least some therapy, that Medicaid accepts. This was mostly for Jess, but I’m in the same situation too as I’m also looking for therapy.

Called Depaul community and family services. Turns out they only take children up to age 18. They only had two referrals for adult therapy. One was C4, which I patiently informed the intake person that C4 isn’t accepting clients anytime in the near future. The other was for northwestern hospital.

I call northwestern. After listening to some nice classical music and the automated voice telling me every few minutes “ your call is important to us,” I got someone on the phone.

Apparently due to there three month waiting list and other reasons, they’re only taking people with a primary care doctor at northwestern, or who live in the downtown area. However they also had referals.

The first was St. Frances hospital behavioral health which is right down the street. Got this woman on the phone. Granted she could have been the receptionist but I decided to ask my questions.

Do they take aetna Medicaid? Yes. (first hoop jumped through)

Do they do therapy with adults, give our ages. Yes (second hoop jumped through)

Do any of the therapists work with self-injury?

“self-injury? Ummm I don’t know. What’s going on?”

“The person has a history of self injury. It’s not the whole issue but she’d absolutely need someone comfortable with it.”

“Oh cutting!” (High pitched voice.”


“Oh yeah we have therapists that can do that.”

(ok maybe?)

Do they do DBT or art therapy? No. (sigh)

Well better than nothing.

On to Evanston hospital also right down the street. Went through the procedure of calling listening to happy music and hearing that my call is important and then getting a stressed intake worker Julie. I only got through my first question do you guys take aetna Medicaid? When she told me that you would have to call a whole different number, the community access line, where the patient would have to answer specific questions (as in I suppose I couldn’t call on their behalf at that point I was too tired to try). And then they may or may not be directed to therapist actually in the Evanston hospital behavioral health department. I was very confused about this because at one point she said they’d be refered to some other organization and then she said it could possibly be people there so I’m not sure if the therapists themselves take Medicaid or why you would need to call a different number specifically for Medicaid patients.

I then went on to the aetna Medicaid website. Be cause the thing is so inaccessible I could only enter in my city and zip. To select specialty and other info you have to hit thisz link that says select but no box comes up. Writing to them has not helped. So I ended up just hiting search for Evanston. Having to scroll through all the results, all the internal medical doctors, other specialists, psychiatrists ETC. It was cool to see Friedman Place and Albany Care cdome up as results.

I found a few people. A couple had websites. None said anything specifically about self injury.

Sigh. It’s just so hard. Especially knowing if we weren’t dealing with Medicaid this would be so easy. Just go on psychology and hit the self harm specialty and then Chicago. There are so many therapists who use DBT and other modalities to work with this issue. There is an awesome sounding outpatient program with a company called Insights, that deals directly with mood disorders, eating disorders, and self injury. Edith called them once. She said they were the nicest people unfortunately no Medicaid.

There’s some weird law in IL a couple of private practice people have told me about, where an individual practitioner can’t take Medicaid or something. Why these few individual therapists were on the aetna site I don’t know. I bet if I were to ask them they wouldn’t even know their listed! That happens too. Someone literally has no idea they’re info ended up online which is wicked amusing.

Anyway this isn’t the case in Massachusetts. All kinds of therapists can apply for mass health. It’s not perfect and you sure get more options if you have other insurance or private pay but it’s better than here in some ways. In other ways not so much because IL and I believe California, are the only states that offer the psychiatric intermediate care facilities, which I keep saying in spite of their ups and downs, are really good services for those that need them.

So yeah just frustrated. By the lack of options, waiting lists and just in general you call other places and you can tell they really don’t care at all that they don’t take Medicaid and that you can’t see anyone, possibly.

What’s more frustrating is this other wonderful IL policy that says that a free standing behavioral health hospital can’t take Medicaid.

Alexian brothers behavioral hospital I have heard mixed reviews about I admit. However they do have one of a handful of centers specifically for the treatment of self injury. And recently wrote an awesome book. Talking to them about getting this book on Kindle, and later I requested it be on bookshare which it is, they’re pretty nice people.

I was very disappointed to learn that they can’t accept Medicaid. They actually seemed disappointed too. Actually it’s really confusing and frustrating because they actually do accept Medicaid for children up to 18. Over 18 though they can’t accept it.

It would be awesome to be able to work with an individual therapist who really understands the complexities of self injury as it relates to the whole picture of someone’s mental illness which could include: trauma, eating disorders, mood disorders ETC. They have a wonderful partial hospital program with a variety of groups including goals, DBT, process groups, expressive arts ETC. It’s just the thing I and Jess, for different reasons, both really need. But it’s inaccessible.

It’s so hard to know that due to the limits of insurance you’re left with so few options for care and often have to take what you can get even if it’s short term, more surface skills based therapy, (which sucks in my opinion because it doesn’t address the root causes of the issues in a long term trusting relationship with the therapist.) or see someone that doesn’t have specific training/ experience with your issue. Also money is an issue. When I had all my SSI check I was able to see some different therapists that I couldn’t have seen otherwise. I wish back then I could have used my insurance more, had thought of it instead of paying out of pocket. Especially with this really emotionally unethical therapist I saw for three years but that’s another story. Anyway back then I was under my parent’s insurance, tufts, as well as masshealth. I feel that if I were to come back to MA I probably would have more outpatient options than here or it seems that way. However I’d lose the stable living situation designed for my psychiatric needs with at least some ok services. So it’s a toss up.

Thoughts on similar experiences with finding services on Medicaid for mental health? What has helped/ worked for you?