Examining the concept of peer respites

I have recently connected with a very engaging, compassionate and resourceful advocate in the mental health community. She’s had experience both as a clinician and a peer supporter. She’s very interested in helping others in any way possible especially when the traditional avenues of the mental health system have failed.

As I was looking more into the theories that underly her sense of the work she’s doing I came upon the concepts of peer respites.

Taken from the website:

Peer respites are voluntary, short-term, overnight programs. They provide community-based, trauma-informed, and person-centered crisis support and prevention 24 hours per day in a homelike environment. Peer respites are staffed and operated by people with lived experience of the mental health system.

I know there are more and more “crisis residential” houses popping up. These are not the same as peer respites, as much of the staff are clinicians with only maybe one peer worker, from my understanding.

Continuing from the website:

Peer respites were designed as psychiatric hospital diversion programs to support individuals experiencing or at-risk of a psychiatric crisis. The premise behind peer respites is that psychiatric emergency services can be avoided if less coercive or intrusive supports are available in the community.

That’s a good idea. I mean psych units are certainly not for everyone. Even if everyone in crisis flocked to them, which often sadly happens somewhat anyway, there are only a certain number of beds so often people don’t actually get the good care that might be available at the best of the units, and then there’s just nothing otherwise.

I do like the idea of the crisis residential house. I have a friend who has gone a few times and done well there. From my understanding, it is a very relaxed environment. People are ble to cook for themselves, have their own room, and participate in things like reading, being on the computer, talking with others there and just having a relaxed space to be.

I am intrigued as well as concerned about this concept being taken a step further in the form of these completely peer run projects.

Their belief is, taken from the website:

Peer respites engage guests in mutual, trusting relationships with peer staff. Peer support involves a process of mutual helping based on the principles of respect and shared responsibility. Peer support includes interactions in which individuals help themselves and others through fostering relationships and engaging in advocacy to empower people to participate in their communities.

This seems somewhat vague to me. What do these interactions exactly look like? If sitting down and talking with the person, in a respectful and empathetic way is what would help than I would imagine that they wouldn’t be in crisis/ need this service. What I’m saying is just sitting and listening I don’t feel is as therapeutic in being engaged by trained professionals, who are also probably just as empathetic and compassionate (the good ones), to work on their lives and find solutions that work for them. Basically saying this first statement sounds way too simplistic for what is needed for someone truly in crisis.

Peer support involves a process of mutual helping based on the principles of respect and shared responsibility

So about mutuality and shared responsibility. All great values.

However I feel that from the side of the person in crisis, this might be asking or assuming too much about their abilitys to embody these values. Mutuality involves being able to at a basic level be aware of the other person’s thoughts, feelings, and needs and be able to change their behavior/ approach to interacting to at least meet that person halfway. Someone with anything from severe depression, to psychosis (especially), is not in a position generally to be able to do this. I’m not just making this up. I live with over 200, closer to 300 people with severe mental illness who are often in crisis and hospitalized. They can’t say please, thank you, excuse me, most of the time. Though they are sighted, when walking down the hall they refuse to move out of a person’s way, at times seeming unaware at others being defiant. They have no social skills in regards to respecting other’s property personal space, or knowing how to engage in interactions and modify their behavior around compromise, conflict resolution and any of the other million ways that we are able to engage in healthy relationships.

I’m not saying that these issues are true for everyone one hundred percent of the time. I’m saying these issues are true for a majority, at varying levels. And that someone particularly at their worst, shows these characteristics in a very pronounced way.

So from this I would say that they’re unable to engage in mutual relationships.

Shared responsibility.

I assume this means that the people running these places put a high level of trust in those seeking services that they will conduct themselves around issues like not stealing, not being verbally abusive, not harming themselves or others ETC. Again I’d have to argue sadly that often this trust is misplaced, or asking too much. Again I can even say for myself when I’ve been in a crisis I would not trust myself, nor would I be trusted to do these things particularly around the self-harm. But also would not trust myself/ hold myself to the standard of being able to go to meals, take care of hygene, and be emotionally supportive/ there for others. As I’m totally overwhelmed I simply couldn’t do this. With one to one extensive support, a structured routine with some external controls, and a medication change things would look a lot different.

Of course there are exceptions. Everyone is different. I think in order to know if a person can work within this unique value system one would have to spend some time getting to know the person, their past history and interactions with others. To determine their abilitys and not just assume that because you wish they would behave in these positive ways/ be able to that they will.

Put simply, many people in real crisis, especially something like psychosis, being aggressive, complete withdrawal/ depression, overwhelming suicidal urges, would not do well in this setting. Some things they need that are not present here are: A very structured routine. Meals at certain times, being kept busy most of the day, with time to relax of course. People who are compassionate and empathetic, yet firm and provide some external controls. Knowing the person can not be safe with certain objects, making some allowances/ the ability to handle different behaviors/ the person’s unawareness professionally. Discussions about medications, coming off, getting new ones, as a calming agent, done with a psychiatrist on board and other medical staff present. This can all be done compassionately and with the person informed of everything.

Below are some sites that talk more about what’s provided in terms of support.

I have not looked into all of these. Only the ones in MA VT and NY

Afiya in western MA

http://www.westernmassrlc.org/afiya

Video:

https://www.youtube.com/watch?v=9x8h3LvEB04

Did not watch this full video. Have read the current information on the website

In VT Alyssum

https://www.alyssum.org/

Video

https://www.youtube.com/watch?v=p96LT0vz3F0

I did watch this whole video! I was very impressed with the setting and the people there. It was very well done.

I noticed there were a lot of older people, older than me, talking about parenting and things like that that I couldn’t relate to and it makes me wonder if this is more for people that are not young adults.

The two people I related most to were the woman with a brain injury (seeing a multiple disability experience was cool) and the 34 year old woman, since she was the youngest.

So from the video and my looking through the websites my understanding is this: They provide the raw materials that one would hope would engage the person in healing and it’s up to the person to make use of them.

They provide private rooms, which think is awesome. I’m not a nature or going outside girl at all! But was impressed with the peaceful setting, I could hear the river, the sound of people walking in the woods/ gardening ETC. I think that’s awesome.

They also had animals chickens and a little dog which I also love.

They have art materials, books, musical instruments, computer, and I assume other stuff.

And the people did seem totally compassionate and present for the people who were guests. I also liked that they did work with people about being supported with other traditional resources. Talking to/ finding a therapist/ doctor, solid plan around staying on meds or coming off (though I would think the doctor would have to approve that) ETC. So they weren’t just saying their support was the be all and end all.

I am extremely impressed with these projects. The people behind them have huge hearts and truly want to give others an experience that they could not get otherwise. Intentions are nothing but authentically wanting the best.

Where I see this kind of setting being amazingly useful is for people dealing with situations where they can not or are uncomfortable with managing day to day on their own. Where traditionally they would be either set up with people supposedly that come to your home, which often they don’t actually come or are not helpful. Or put in some kind of “supportive apartment program” where they’re given some ghetto apartment and again it’s claimed they get support. Which may or may not happen. Or a group home. Which depending on the place could be good, or very bad. Some places are even unlicensed!

There are therapeutic residential communities designed to be an alternative however they are thousands of dollars a month which is totally ridiculous to expect those in this population to afford!

Something like this would be perfect if there was some way for a person to pay perhaps several hundred dollars a month, and have this very in tune community with all these holistic resources as a safe home. And then to also have access to other clinical services if wanted/ needed.

That would be amazing I would totally one hundred percent be on board. I think people in that position of having this as their home, when not in terrible crisis would then allow them to be able to focus on a mutual relationship and learn the skills around that.

For overwhelming crisis, at the very least I’d want a clinician supervising everything to be sure of safety for everyone. I would not encourage things like glass used for art projects, knives, and other objects to be available with no restricted or monitored access. I would think you’d need to trust and know a person way better to have some of the stuff they do around and be safe. I think when in a good place, or even somewhat hard place, as I said these raw materials and purely peer relationships are amazing. In a more severe place I really feel it’s just not enough, expecting things from people that many can’t do. I feel my concerns are justified.

Would love to hear others thoughts. I’m extremely new to this idea of full peer support as an answer to mental health issues. I do see the value and would hope others see the value of clinical care when necessary. I would love to discuss this kind of setting being used as a true home for many people isolated and not managing day to day with what is out there that often misses the boat in so many ways.

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great orientation last night!

Hi everyone,

So to update. The orientation last night was really good. Becca’s assistant Jamie lead it. He did a great presentation about the organization, different services, showed a couple short videos and answered people’s questions. He was very personable and had a good sense of humor. I liked him a lot.

I will be talking to Becca next week about my personal situation and likely would do training, if I get to that point, in august. June is weird because they have a day time training which could work. Otherwise it’s nights and two weekend day sessions. But we’ll just have to see. If I did the june training I’d have to sit in a training all day on my birthday. Which would be an awesome present but also annoying as I really wouldn’t want to spend my whole birthday doing that.

Looking forward to getting the chance to discuss individual stuff next week. It was really cool to meet other prospective volunteers too. A lot of what you would expect. A lot of college students in social work/ psychology, others just trying to find something they might be interested in. One woman is a retired school teacher originally from Boston.

So that was cool. Jamie emphasized how there are four supervisors per shift and how willing and supportive they are in helping volunteers.

We were waiting for PACE to come and could sort of hear what was happening in the call center though not a lot obviously. It seemed really relaxed.

So I was really happy with the night. I’ll just have to see next week when I can talk about my specific situation.

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It’s the night before the most important day of my life LOL!

I can’t believe tomorrow is NRS orientation!

This is like the most important day in a long long time! I’ve been wanting to do this hotline since I knew I was going to Chicago. I remember meeting one volunteer coordinator when I was at a local college with the Friedman place activities department. I didn’t have the time at that time but wish I had because she seemed a lot more friendly than the person we have now. She has an amazing linked in profile. I think she still volunteers on the weekends. Have tried to contact volunteers who have gotten mentions in their newsletters on facebook but totally get why they wouldn’t want to respond to some random girl.

Anyway I’m beyond excited I feel like this is like heading into a voice recital all this preparation and just having to sit back and say I hope everything goes like I planned! I’m confident I’ve done all the research and connecting I possibly can at this moment. I’m hoping there will be a lot of other people wanting to volunteer and it will be a relaxed two hours. I know at the end she does individual interviews, and I’m hoping mine doesn’t go back to the blind tech aspect. Was told by someone I trust to just steer the conversation to my qualifications ETC which is what it’s about tomorrow. And that we can discuss tech later. I’m actually really relaxed and optimistic. You’ll know if I get to be able to start training you’ll hear my Sammy squeal from wherever you live including friends from Ireland!

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insurance complications are crazy friend’s CT scan delayed

So a final update around the gap in my writing. My friend’s scan for the pancreas concern (it’s been called shadows by one person and a mass by the DR) was long awaited for tomorrow. When we heard about the shadows thing we were really relieved as it didn’t seem anywhere near as bad as a mass. But then her DR. kept saying mass. Not sure if it’s an English thing as many doctors here are not native English speakers. Whatever it is soon enough we’ll get a straight answer. Sadly it won’t be tomorrow.

We went down to the office where the person who handles insurance stuff worked. Now keep in mind this has been scheduled for three weeks or so. She got a call from the hospital today saying that they need a prior authorization from insurance to do it. And we’re hearing about this now? So long story short she can’t get it done til the insurance has that form filled out. The office staff, and director of nursing were just as disgusted as we were. They said that sadly these issues of lack of communication crazy paperwork, and that coming between a person and their care are the norm and will likely get worse. Thank you trump!

They said as soon as the form is in they’ll schedule the appointment. I know the first time it was booked out for a few weeks which is why we waited so long. We’re anxious about having to wait some more. Friend asked hypothetically, could they hospitalize her in order to get this scan done. She was told just because she would be in the hospital doesn’t mean it would get done again without that form. Obveously she doesn’t need the hospital right now it was just a what if push comes to shove kinda thing. But that’s totally messed up! That someone could be in the hospital needing a test that they’d have acces to it right there but could not have it performed due to paperwork.

We’re both disappointed. We thought tomorrow would just be The Day when we’d be one step closer to getting a clear answer on all this and moving on.

I am very nervous about what trump’s cuts and healthcare scfrew ups will have on our care here at Albany as well as anyones. I somehow thought the big changes only affected those with private insurance. I figured those uninsured were really screwed, but was pretty sure those on Medicaid and medicare would be fine as they’re state programs with federal imput. But I guess not!

She’s good. I’m proud of her for taking this in her stride and not spiraling. And she’ll see her therapist tomorrow as usual which is good.

Those are all my updates for now. Will try and update more regularly.

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final progress on NRS preparations

So again haven’t been really writing much. Have been so busy with life basically.

So have finally I think got everything together for the National runaway safeline orientation/interview on Monday. To make a long story short I finally connected with the Chicago Lighthouse and the head of tech. Who said the system is 90 percent accessible! And that blind people really like it. He agreed to do whatever he could to help. The most helpful approach I can think of right now would be for he, myself, and the NRS tech person to meet and get on the same page with all aspects of technology as it relates to what I’d be doing. With an expert on board I feel my chances of coming up with solutions are really good or way better than last year, and all this time previously spent stressing and trying to throw together possibilities through endless circular discussions with other blind tech friends! PS, thanks for hanging in there with me on all that! It’s just how I process and maybe I needed to go about this the way I did in order to make that connection with the right people in the end.

Today I also had a wonderful meeting with the head of accessibility for Icarol crisis services. We used an amazing meeting software/ product called Zoom which is free, well one version is. Anyway she was very nice, we had some initial problems getting started but after that it was great. I gave some feedback about easier navigation within the page but in general things were way easier than last year! So that really makes me happy.

It seems like it’s safe to say I’ve done everything I can and probably need to just take my mind off it to be as relaxed as possible for Monday. Like when you are taking a big test or paper and you know you have done everything you can to prepare but are still stressing. Best advice I have heard is to just sit back and believe things will work out.

I’m hoping the more relaxed nature of the orientation will help me be more relaxed in the interview. One thing I want to be clear with them on is that I want the assurance (or not) that I am qualified to start the training process before the tech stuff is explored in depth. As in not to do the thing of last year where the tech was priority and that was to determine my fit for the position. Needing to figure out a tactfull and professional way to frame that. So disabled friends with experience stating such an issue in this kind of process please weigh in or privately message me.

Just really want support in confirming that I’ve done all I can. From those that personally know the extra weight I’m carrying as someone with a disability and who have felt how I feel trying to anticipate any possible issues and having to prepare as I’ve done.

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book review: Mummy Told me Not to Tell by Cathy Glass

I just finished reading another awesome Cathy Glass book.

In this memoir Cathy and her family are caring for Reece who is seven years old. He has six siblings all that have been taken into care at various times, starting with the oldest 18 years ago! Why the social services would just allow this woman to keep her kids I don’t know.

The last two children the Mom Tracy had Rece, and Suzie were taken into care after Suzie disclosed possible sexual abuse at school.

Suzie was doing well in her new home but Rece was very difficult to settle. He had major hyperactivity, bit, swore, physically attacked and had the needs of a three year old. To make matters worse Tracy was constantly calling and showing up at the social services offices abusing staff verbally and physically and having to be removed. She’d been banned from all the contact centers!

She, and social services in general, wanted this to be Rece’s last move as he’d gone through a number of carers in just a few months.

When Rece arrived he had almost no attention span. His mother in some perverse sense of humor gave him the nickname Sharky because he bites! Cathy and her family were horrified. For the first few days he spent most of his time zooming around acting like a shark, shouting at the top of his lungs, and having no idea how to basically just not be on hyper drive all the time.

He was also wasn’t able to clean himself after going to the bathroom as was discovered the first day. It was said he had soiling accidents but none happened at Cathy’s he did wet the bed when stressed at one point. But Cathy matter factly taught him that skill. He also couldn’t dress or undress himself, wash himself and other basic life skills.

It was a fact that Rece and all of his siblings, except Lisa who lived with an aunt had learning difficulties. However that didn’t mean he couldn’t learn and Cathy set expectations for him as she would any child just approached things differently.

The only times he seemed calm were when watching TV, being read to or eating. So in the beginning there was a lot of reading going on. Cathy wisely limited screen time, and did take TV away if he was being rude.

The second day at Cathy’s he showed sexual behavior. It was suspected there had been a pedofile in the home, and that Rece’s Dad Scott had sexually abused Suzie, but they didn’t know for sure about actual sexual abuse. They knew that he had watched “adult videos.”

Cathy made sure that Rece did not see any contact between him and her or the girls as sexual. She had to have several talks with him about “private parts.” This became an issue at home and at school.

At the end of the first week Cathy met Tracy and the siblings. It was extremely chaotic. There was Sharon, basically a clone of Tracy in physical appearance and demeanor living in a care home. Brad, Sean, and then Suzie and Rece. Absolutely everyone shouted and was physically aggressive as a matter of every day life. She had no trouble understanding where Rece’s hyperactivity came from.

The first few contacts were so hard on everyone with Tracy verbally abusing Cathy in the parking lot. All the children running around totally unregulated and not getting home til nine thirty or ten at night!

Jill her social worker got an escort in place so Cathy didn’t have to deal with that abuse and that smoothed things out for Rece.

A huge issue for Rece was that he had not been in school for months. At first Cathy thought it was due to all the moves, five carers in four months. They had trouble getting Rece’s social worker in touch as he seemed to be on leave and then took his time getting in touch. From the beginning it was clear Jamie operated on slow laid back mode around everything. He was a gentle man, but extremely laid back and took his time, claiming it was “a complicated case.” He wasn’t rude or purposefully neglectful he truly thought he was doing ok but just wasn’t putting in the effort. This made it very hard as Cathy couldn’t be on the same page with him around getting a school quickly.

Of course it came down to Tracy threatening to take social services to court about no school. When the judge ordered he be in school he was placed in a local school in the area. Cathy didn’t have the parental rights to choose the school, or switch schools. She had been waiting for Rece’s statement of special needs and didn’t read it until coming to the school and meeting the principal who was none too thrilled.

She couldn’t believe what she read. Basically it said that Rece was unteachable and created chaos for both children and adults including physical and verbal abuse. And that his skills were vfar behind that of a seven year old. Had Cathy not had Rece for a couple months and seen how settled he could be, and how he did want to learn (she had been teaching him at home some) she would have been very concerned about taking him. The school did receive funding for a TA full time.

Rece was over the top excited about school. The first day Cathy had to stay there the whole morning to be sure nothing happened. And things seemed ok.

Unfortunately a very unhealthy pattern emerged. It appeared that Rece though totally regulated at home, felt somehow emotionally unsafe or needed to test the boundaries at school. Perhaps he unconsciously equated school with life at his mom’s. Or sensed that these people weren’t confident around his needs and were afraid of him. In any case he threw everything from sexual touching to destroying property, physically attacking other children running around the school and anything else you can think of at this school.

The principle and staff were beside themselves. What was worse was due to Rece’s disability if theconsequence wasn’t emediate he totally forgot what he’d done. Genuinely. He was very sad and remorseful about his actions loved school and wanted to do well.

By this time Wendy the Guardian Ad Litum visited. She was very disappointed in Jamie’s slow approach as he was supposed to be visiting every month or so and fighting for Rece. Cathy was so happy and relieved to have Wendy’s support as she had felt all this time that she was the only one in his corner.

Meetings were held. The Principal was very against Rece in his school and kept asking when he’d be leaving Cathy’s or if he could go to a special school. It was determined by a psychologist that Rece did not need a special school. And that they had all the funding they would need. They did split up the day with two TAS instead of one which helped some. They tried putting behavior management stratagies but this did little.

Finally one day Rece seemed to mentally connect something around school to being with his mom and once he and Cathy had this conversation his behavior changed almost overnight.

Another thing that really worried Cathy and her family was that Rece was completely shut down about anything to do with home. When asked even the simpliest question he’d say “ don’t know.” A couple times he talked about “bad secrets” and seemed very happy to be home from contact but Cathy was very worried about the toll these unresolved thoughts feelings and traumatic experiences were having on him.

Rece’s story does have a good ending. One where he’s able to have a solid family. The mom Tracy kept having kids, though they got taken away right away.

I loved the story. Cathy’s persistence is a huge asset to her ability to do this work. Whether it’s working with a child’s behavior fighting with a neglectful or inadequate social worker, or advocating at school she will not be turned away when caring for a child. She is the kind of foster parent anyone would wish to have. It’s really a shame too that Tracy had such a volatile relationship with social services. Cathy learned some horrifying information that showed the abuse deeply embedded in the family. However sadly Tracy never made the choice to reach out for help. And so likely would be mentally ill for the rest of her life.

I wonder how Rece grew up and if the possible traumatic issues not disclosed either in care or with his family caught up with him.

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I hate bank of america! overdraft fee

So couldn’t blog about this when it happened because internet was so off the wall I’m lucky I could even go online to my bank.

I am usually really good with money. The last huge money issue I had was when Albany suddenly found out I owed them all this rent money and at least I had like the right amount saved. It seems like whenever I save money, which is like super hard around here for all the reasons I post about, something like this happens.

Because of where the first fell, or something, I got my SSI check like four days early. So I decided to just pay rent. I was sure I had enough money for that and pizza. And I think part of it was the internet being so slow connecting and the payments going through. But on Friday I got an e-mail, so glad I could even check it, saying I had overdrawn. Oh there was this one time I had overdrawn by like three dollars or something. So I thought it was like that. No $62! Jess and I were like OMG how did this happen.

Well basically the pizza thing is what did it, like I said somehow I swear it was when that check came in that threw things off plus the internet problems. So that was like $25 which would have been ok. Overdrawn fee $35! It’s like they want you to go over so they get money!

So of course I’d saved like $78 it took me months I was so happy. Well no more it all basically goes to the bank because of this one little thing. I was just like shocked.

My mom’s like that’s bank of America I hate that bank! I started with them because at the time 2008 there didn’t seem to be any banks that did online banking. Plus there was an ATM right at the school. And then when I came out here there weren’t any other banks we could find that had branches/ ATMS in my parent’s area and where I am.

So if anyone knows of anything that would be great. Like a better bank. My mom was asking about credit unions. I have no idea what that even really is. The only way I learned about a bank account was when I got one, LOL seriously so yeah. I’m lucky I don’t have more problems! But my parents are just won over by this credit union thing because my sister has one in the middle of nowhere Maine at her school, and they have one somewhere where they are and they can transfer money to her and I guess it’s all awesome. I’m like okI’m not sure.

But anyway that was my horrible adventure. At least I’ll be getting birthday money soon because it’s my birthday in less than a month OMG! But yeah. So the moral of the story is that SSI checks should not come in on different days than usual! And of course pay attention to your bank account.

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Happy birthday Jess!

Today is Jessie’s birthday yay yay yay!!!!!

We had an awesome day! We went to IHOP and I got strawberry waffle, and Jess got her plain pancakes. (why would you go to IHOP and get just plain pancakes?) Whatever you get is a huge treat compared to food here so yeah. We both had milkshakes and she had two.

Then we came home and I gave her her present of a new digital recorder! That no one from here better steal or throw away or whatever happened to the last one.

I was not depressed (like last year LOL) and we just had an awesome time!

Activities for this week: Cat shelter on Wednesday! Hopefully finding someone to talk to about Shoretel even if it means going around the whole company! Hopefully this internet behaving more. Since Friday it’s been so screwed up.

Hopefully talking to Mr. J about what in house Job I’m gonna do for him so he’ll pay for me going to NRS or the cat shelter. One or the other.

So yeah. Oh and we hung out at dunkin doughnuts after we ate, and got their awesome cookies!

So I’m very happy and so is Jess!

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catching you up: May is going to be a busy month!

Hi everyone,

So I know with the exception of my book reviews I haven’t been blogging for a few weeks. I’ve just had so much stuff going on that by the time I’m winding down for the night I’d rather spend the energy/time reading a book or something than writing. It’s hard to put everything into words.

A lot of what’s going on is very positive! Jess and I finally found a cat shelter that will allow me to interact with their animals in spite of being blind and of course that’s such a huge risk they’re taking!

Red Door. I actually did go to them with Erica from Trilogy way back when but when I got settled here the person over there got really bitchy and said they couldn’t have me go anymore. And for a long time it was just no across the board. But they must have changed staff or something because when Jess wrote them they said as long as I was with someone it would be fine.

We’re going to an hour orientation on the tenth! We looked over the volunteer guide and I guess we have to do a lot of cleaning along with just hanging out with the cats (and Bunnies), which Jess is thrilled about making me do LOL! She’ll probably take a picture of me dumping a litter box or at least wiping something down and send it to everyone!

So that’s a huge relief because I know it will be therapeutic for both of us. The other thing is I continue to kick it into high gear around NRS. I got in touch with my former disability services coordinator at Lesley. She’s boosted my confidence in proving I can do this and outlining how. So I sent in a new application, I applied last year but we got so focused on the technology side of things rather than simply if I could actually do the job. So hoping we can start fresh. Now knowing the technology they use I’m able to research everything. I will be doing a screen sharing session with the accessibility manager of Icarol this week, who has been nothing but amazing!

I am still trying to figure out shoretel the phone/computer combination system they use. After awhile of researching I found out that the lighthouse for the blind, in Chicago and other states, uses this product. So will be writing them and hopefully getting support.

Also looking over the training requirements I know much of the classroom training I can easily do, I’ve obviously gotten through school, but in respect to trainings did a forty hour domestic violence training just fine. I would only need materials e-mailed to me and if not could even just take more notes than the average person.

So hoping that she, and other staff there will have the mindset of taking this one step at a time and actually looking at what I have to give rather than the issues that could come up. It’s hard, many of the people I’ve talked with who are blind/vi and who have done this kind of thing have not run into opposition. And I haven’t either until now. But I’m hoping I can firmly but positively get through it.

Then last Tuesday I found out something very concerning. One of my best friends has a mass in her pancreas. They found it when doing a routine ultrasound for something else. She has a family history of cancer, but also of benign cysts. So it could go either way. She has no pain or symptoms right now, and it wasn’t bad enough on the ultrasound to make her have to go into the hospital but it’s still very serious. Because of the family history. And she’s had past medical issues that will always affect her body. Being very overweight, heart failure ETC.

She’s having a CT scan on the 17th. Which is when we’ll know more. We’re hoping for the best which would be that it’s basically something benign that they just monitor through scans periodically.

It’s been very scary for me obviously. I haven’t had a Jonathan meeting or Anna meeting since it happened. Although I did write Jonathan on that day and another day saying what the issue was and how important it was I talk to him. I have less of a connection with Anna, who is doing her best but more and more seems burnt out and the week was crazy. She was supposed to come Thursday night as usual but that didn’t work out. Friday night there was major crisis around here, and today she said she might stop by but it seemed like she was only covering a few hours. In any case, she wouldn’t have the kind of ability to work with me on it that he does.

But still. I process things by expressing my feelings out loud. And besides staff the person I usually process things with is the person who this is happening to. And I really don’t want her to have to deal with my intense feelings about it. She’s been great, and says that my points of concern are valid and we’ve discussed them. She’s been outwardly calm about it and so when I’m crying she’s the one comforting me and saying we’re gonna take it one step at a time.

I am hoping that while we’re going through this, likely the next month or so, that I can see Jonathan regularly. Because I need an outlet.

But I haven’t been scratching. Which is good. I’ve thought about it but it really wouldn’t make a difference. It certainly wouldn’t make him come running, tried that way back if he knows I’m doing it to get him togive me attention he just lets other staff deal with it. So yeah we’ll just have to see.

Other than that I’ve been doing my usual amount of reading and new activity of watching switched at birth which I absolutely love especially the audio description was amazing work!

So hopefully will be writing again like normal so won’t have to write huge long updates!

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Book Review: Thirteen reasons Why by Jay Asher

With the recent hype about the Netflix tv show based on this book I decided to first read the book as I think that’s always a good idea. Often it is better than the movie/ show.

I think it’s great that it’s spreading awareness about the issue of teen suicide and how what seem like little things mix with bigger things and everything adds up to make a person feel isolated and like there is absolutely no way out.

This book and the show have done a lot in this area, even getting more traffic to well known crisis services. Which is a huge positive. If the book/show got one person to reach out to a crisis line, teacher at school, counselor ETC or got one person to consider how bullying affects others then it’s worth all the things that I and others dislike about it.

So this book was originally written in 2007. I’m guessing at that time there weren’t a lot of young adult novels dealing with mental illness. Many s say it was the first thing they had read that really resonated with the experience of depression and mental health difficulties. If it was one of the first then it kind of makes sense why it might not be as nuanced a portrayal as other books since.

So the whole thing is that before she kills herself she makes these audio tapes talking about each reason/ person that contributed to it. First of all tapes? In 2007. I mean ok we weren’tt at the facebook [podcast level y yet, if this were written now she could just make a podcast and send to everyone’s e-mails at once with a picture of the map attached LOL. But she could have at least made CDS.

But on a serious note. Basically Hannah strikes me as someone who from the beginning is not secure in who she is. She has very low self-esteem. There is a lot about what I think happened to Hannah that she does not say but that you can hear under her words. For example she does mention family problems. For someone with low self-esteem it sounds like family was a big part of her life before her parents moved to the town she’s in. She also mentions later in the book and I just get this intuitive hunch as well, that other things were going on at home or internally for her that didn’t have to do with school and social life there. She says a couple times that there are things she just can’t say/ admit to herself. I feel that those things are at the core of why she did this, and that many of the reasons were actually the tip of the iceberg. The more traumatic ones towards the end deffinetely are things that probably really pushed her over the edge, the other things I feel were more in the background chipping away at her life and sense of who she was. And then the things unsaid I feel as I said were probably most to blame.

So each person on her list is sent this box of tapes with a map. Each tape is about a specific person with a corresponding place on the map. When Clay, her crush and someone who always wanted to really connect with her but never could gets the tapes he’s stunned and begins to listen to them and follow the map.

He goes through such an intense struggle of emotions and memories of little moments with Hannah, how what he heard about her affected his inability to get closer to her, and how broken he feels that he couldn’t do anything.

I have mixed feelings about the tapes thing. It seemed like the tapes were made over a course of days or at least a week or two. That she wasn’t just sitting down saying things she’d previously written out like an audio suicide note. But rather the tapes were a way for her to sort out her thoughts and let out her feelings in the hopes that people would know exactly what she went through, and in the end feel guilty. You can see her reflecting on things, making new connections and becoming more desperate as she lays things out. The last tape is about her encounter with the only adult she reached out to. Though that ended badly, was there no other time in the course of days making the tapes and processing out loud that she could have reached out for help? It seems like the plan was too, I don’t know, thought out and done over a period of time where though I’ve seen many many people deal with suicidal thoughts/ plans long term I’ve yet to see someone sort of plotting how they’re gonna express this before they’re even sure they’re gonna do anything. Because it wasn’t til the very end that she was sure she was gonna do this. I’m not saying it doesn’t happen but somehow the process of making the tapes and map creating this game almost, is just I just don’t believe it there’s something off to me.

So that whole thing actually kind of takes away from the whole story. I think it would have been a more true representation, and I’ve seen other books do this, where it really goes into the places in her head she doesn’t want to, that she feels she can’t speak about. Because as I said I strongly believe that’s at the root of what’s going on. Books that do that, that have a character starting out discussing one thing, only sharing feelings/ thoughts on one level and then being able to dive into deeper pain really have been effective and more believable than this.

Not to say people don’t want to end their life for the reasons she has, like I said I just sense there’s more going on. And that this business of the tapes/ map thing is so unrealistic that it takes away from what actually could be going on.

I’ve just read better books before now around bullying, (empty) which she says is at the heart of things, well along with the bigger traumas which I’m not denying were huge players in this.

I wish there was more abouthow people can reach out/ crisis lines which weren’t mentioned at all in the book.

So no I don’t really recommend this. I think it was good for it’s time, where mental health issues might not have been present in YA books, but it got off track with the tape game and so lost a lot of it’s truth for me.

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