starting a dialogue creating safe effective living situations for disabled people

I’ve posted about this topic numerous times here from different angles, and when I was in various emotional states. Today I hope to step back and concisely say how I feel in the hopes that it will inspire good quality discussion and brainstorming possible creative solutions.

The topic is: the tragedy of so many people with disabilities in very poor living situations. And what can we do to change this?

When someone thinks about services for people with various disabilities, particularly autism the focus is on children. Schools, different therapies and products ETC are commonly featured in the news or other media. So when people think of a person with a disability and the support circle around them, often they think of children. Children who live with their parents who are trying their best to access the best treatments products and emotional support for themselves to help their children basically grow up to not be disabled. To fit into “normal society” as much as possible. This is another topic for another post, but I think an underlying piece of the issue of what disabled people face as they hit adulthood. Many believe and expect maybe subconsciously, that what’s available for children if it’s used correctly and everyone works hard enough, will minimize or eliminate the need for services for adults. Or less comprehensive services.

Don’t get me wrong obviously children with disabilities need services that fit their challenges. But I think there needs to be the thought when talking about people with disabilities, to include the fact that they’ll grow up and regardless of what outsiders have tried to push on them will still have their disability. To one degree or another. They may have changing needs, and yes some may not need any services. But that should be their choice not something forced on them because there are no other options or every single agency is pushing complete independence (I.E) no professional help.

So what happens when a person with a disability reaches adulthood? This would be 18 or 21 depending on the services. They can continue to live at home, receiving whatever is available on the adult level of services for those living with family. They could live in a group home, have services providers come into their home, or live with friends or significant others. And perhaps other configurations of these situations.

For myself as someone who’s blind and has psych disabilities I lived with my parents until I was twenty. I then lived in a college dorm but my psych disabilities very much interfered with my quality of life there. I got my degree but often daily living needs like being sure I went to meals, hygene, getting clothes washed ETC did not happen or happened sporadically. I was also quite isolated. So I moved then to an assisted living community in Chicago for the blind specifically. They basically lied saying that they had services to work with those with multiple disabilities, including psych and they don’t. So then after my psych issues became my primary concern I moved to a nursing home that specializes in these issues. Where I continue to live.

Many probably have a similar story of going from living situation to living situation as their needs change, or sometimes they are forced out of or into aa living situation due to lack of resources either emotional, financial or outside supports.

I will now discuss some of the struggles that I’ve personally faced or that those that I care about face when trying to find a living situation that works for them.

Many people very much value living “on their own.” In their own apartment/ house with friends or a significant other. In an ideal world I so wish that everyone who wanted this option could pursue it and have whatever needs they had in order to be successful met. Many people who choose to live on their own do need help with a number of things. Their disability/s could make daily living tasks such as personal care, cleaning house, going out into the community, preparing meals ETC extremely difficult, or not doable at all, or not doable some of the time. If someone has these needs then it’s something they always have to think about day by day. They have to worry about things like getting enough food, having a clean living environment and generally whether they will have any human connection or not if they’re unable to access the community.

Many say the answer to this is to apply for assistance with agencies that provide home healthcare, personal care attendance or other names for people who come in and assist in whatever needs to be done. I have not personally worked with such people. So I would love the perspectives positive or negative of those who have had contact/ used any outside caregivers. I will say I’ve heard very mixed reviews, honestly slanting towards the negative. People will say well people are more likely to complain about something then tell a positive story. I don’t believe this is true. As yes I have heard positive stories of great caregivers. That come in consistently, build excellent relationships with people and are a huge support. But the story usually ends with “and then this person left and now I have a really bad caregiver, or many that don’t come when they should etc.” Some people haven’t even had the experience of good caregivers. They’ve reached out with their obvious vulnerability and trust these people with their lives literally, and at times have been abused or ignored. This breaks my heart that someone would have the courage to say I really need help with whatever. I want to not have to worry about these basic things I want to concentrate on just living my life. Then they get treated this way? Situations like that call for much better screening training and supervision of these professionals, and likely higher pay. I have a friend as well who worked at an agency that advocated for outside caregivers. They told me that the people in these jobs often were not very trained and frustratingly though through no fault of their own, did not have a good command of the English language. This makes it challenging for people who’s disabilities make communication difficult in the first place. Again I welcome any comments about in home support.

To list the problems that I see my friends who I deeply care about face every day: Lack of personal care being attended to, lack of food either because of poor money management or access to being able to go to a store

Not having a clean or clutter free living environment

Lack of access to needed medications

Lack of social connectionand emotional support.

Being isolated and in extreme physical or emotional pain with no human connection.

Lack of access to needed healthcare appointments.

These are just the things that come to the top of my head as I consider my friend’s situations. The scariest circumstances for me to witness are when someone’s personal care is neglected/ unable to be addressed, food and meds. But the worst for me is the isolation. To be dealing with things like severe chronic pain/ neurological disorders, severe depression, panic attacks, PTSD, sensory processing disorders ETC and to be alone. I hear about this happening and just wish I could wave a magic wand and get them the solid and compassionate support they need. Or give the head of the agencies supposedly responsible a good talking to!

Another level of care involves the system of group homes/ assistive living. Again these options vary by geography, and availability of funds as well as disability. A big issue for many facilities in certain areas is lack of license and oversight. I’ve heard of many places where anyone can say they’re running a group home just to get money. They have no training, no checks to the house/ seeing about quality of food, environment ETC. And they take vulnerable people and just get their money. People are often abused in these settings suffer from malnutrition and generally emotionally traumatized.

This gives the group homes that are doing well a bad reputation as many feel that all such places are “instutional” abusive and in it for the money. This is not true. However I feel that the whole world of group homes/ care homes needs major reform. So that anything that’s out there is solid in training on the various disabilities they work with, nutritious food, a structured routine with staff that genuinely want to assist people in living and not just minimally surviving.

The problem I and others have found with the assisted living world is that the majority is for those over sixty five. Having a community where people have their own apartments where they could live with a friend or significant other, but with the security and physical safety of knowing that the needs listed above would be provided for, seems to me an ideal option for a lot of people. Unfortunately as I said there is just so little available. Another barrier is that almost all the places I looked into even for those over sixty five, clearly state they don’t take anyone with psychiatric disabilities. That rules out a huge chunk of the population that have multiple disabilities that include mental illness. At the very least that needs to change. However I also feel there needs to be some way to work with the under sixty five population that would benefit from this living arrangement. And to work to make them truly inclusive emotionally, physically and mentally supportive. They then would be collaborative safe spaces.

Obveously on these two levels of living situation there is so much work to be done, to even begin to dialogue on options. So much depends on financial aspects which I have no knowledge of. I do know that for whatever reason certain disabilities get more funding for certain things than others. As well as that across the board everything is being cut. That being said is there a way to look to our own community as a whole, and commited allies to find creative solutions? Could we as people with various disabilities form friendships and connections, but also go deeper? Explore each other’s strengths, needs and growing edges. See if there isn’t a way to create a interdependent living situation where all benefit. And for those nondisabled people, is there a way to think of people with disabilities as individuals, who need to lead lives of their choice as much as anyone else? Rather than saying it’s someone else’s responsibility saying there’s no solution or just ignoring the problem, could you take a moment to consider how you can be of help? This doesn’t mean moving your disabled friends into your house though you could. It could be bringing food by at certain times. Making a routine of calling a person daily at specific times, being an emergency contact if possible or filling in if a care provider flakes out. Going to someone’s group home and doing your own assessment of the situation. And mostly sitting down with that person and letting them tell you what they want in life, what their challenges are and try to work on building that life.

I hope that I’ve said what I’m feeling and thinking in a way that starts discussion and provides food for thought. I’ve tried to put all my complex and often extremely emotionally driven thoughts into something concrete. Which is challenging for me. I spent a long time last night thinking about the title, I’ve erased and wre-written things which I rarely do on my posts. I really am hoping this can be the foundation of something. I realize it won’t be earth shattering but if one person sees this and views a disabled person who is living alone, in a group home, or doesn’t have a solid living situation in a different light this post will have done it’s job.

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finally had a therapy session!

Hey everyone,

So am feeling so much better. Finally got to see Jonathan this afternoon at around three. Talked for a good hour. Really needed it.

First we called the hospital Kat my deaf friend is at. She’s been in the psych unit since last week and I’m extremely worried about her. People reassure me that they have interpreters but I don’t trust how regular it is. On paper there seem to be deaf services in places at least much more than anything for the blind is mentioned, but then I’ve heard that it’s not as good as it sounds often.

Especially when I found out it’s one of the units I hated I was and am still suspicious. But Jonathan is quite the authority as the clinical director of this place and after a couple transfers he found her unit. Unfortunately no relay phone so we couldn’t talk to her but left a message. (wish they could draw a picture of a hand making the I.L.Y sign) LOL!

But anyway that was nice.

Then I went on to talk about how upset I was that he never responded to the message I left him last week around having cutting thoughts. Turns out he never got the message! And edith never could catch him to tell him about that I was so upset. He was very concerned and asked why I was having cutting thoughts.

I launched into everything wanting so much to not live here and why. And then about meeting others with disabilities online who are in a supportive mutual relationship where they seem to be doing well living together. And how much I want that for Jess and I. About how I doubted very much she and I could live alone together. We’d need a stabilizing force, whether that person had psych disabilities or other disabilities or no disability. So yeah I went on and on about that.

He was extremely impressed and said a huge positive is that I’m thinking about a life outside Albany. We talked again about what a problem solver I am and how even being able to tackle the problem, whether I solve it or not is calming. When I can’t things really build up.

So since we can’t like do anything about us moving next week nor would we want to and I don’t yet have developed friendships with cool disabled people in other states ready to embark on this journey, we played a little imaginary game. What if Jess and I did want to live by ourselves in Chicago? (which believe me I soo want to get out of IL) And he made it clear this was just a what if.

So we talked about the moving on program which is what they use for residents that want to move out. And I objected saying all the horror stories I’ve heard about them. And he said yeah that’s true but so many had no idea what their needs are and one good thing about me is I know exactly what my needs are and insist on them ahead of time. So we were talking stuff through.

One interesting thing is when they started they didn’t allow you to move out with a roommate. Because someone had the thought that it’s better for you to live totally by yourself for umm your mental health or something LOL! At least it’s not just the blind community that has that judgment.

But they’ve changed on that and they allow roommates now. And we talked about the apartments they have. And I’m like well half those places are in the ghetto and he’s like well not everywhere. We talked about all the support services we’d both need. And I was like is this even realistic and he’s like I don’t know but we’re just tossing ideas around.

One thing about Jonathan is he’s extremely creative. Extremely wanting to go outside the box to make things work for people. So instead of ruling something out he tries his very best to get people to think about solutions that they never considered. He even said that we could work with these people and just get them to think about this with no intention of moving out yet. Just get them to look at different needs and how to work with people with multiple disabilities which could be worth it. He said how much he’d love to have the director of the program in the room and present all this to him. He may one day because they have talks about the program all the time.

So yeah it was basically an intellectual exercise but it’s one I needed I needed to channel all my emotions somewhere and not be drowning in them. And I explained to him about shared living/ adult foster care which he’s never heard of. Not a big surprise since they don’t work with psych issues here in IL.

Then we talked about the not meeting stuff and the inconsistency. He genuinely said how much he enjoys working with me. How it reminds him of why he does this work which I’m sure in all the hasles and paperwork and everything is sometimes hard to remember! He said he wishes he could work with more residents individually. So yeah I cried and he just said how much he wanted to keep meeting. And that everytime we’ve had inconsistencies it’s because he’s been truly swamped with stuff. I mean in the past month we’ve had the elevator stuff, he’s had to go to court several times with residents, Friday the garage door broke just everything. Plus training his new assistant which always means he has to handle more while they get used to it. But he says it’s calming down and other times he’s said that it has. Until things pick up again.

So yeah. We’re shooting for this coming Wednesday though in thepast Wednesdays have been rough. And now I’ll call and e-mail something when I want to get ahold of him because he said today he sees his e-mails anywhere he is even if he can’t reply. Not sure I believe he reads them LOL!

So yeah I just feel like a million pounds lighter. I didn’t know what to do honestly if I couldn’t connect with him or keep meeting. I was thinking the next thing would be to have Dr. Fyazz just up my meds. Who knows which ones since I’m on like four plus my PRN but yeah.

So yeah it was a very long but needed talk. Some people might think this guy is crazy with some of the stuff he says and just like yeah. If you saw a guy balanced on a therapy ball just chilling you might be like huh? But he literally saved my life.

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finally meeting with my therapist since over a month

So we all know that the one issue I’ve had with Jonathan being the clinical director of this place is that it’s really hard for him to be my therapist. We’ve agreed to it after all we’ve been through together it made sense. But once I got out of being so high risk, I was emotionally more stable and self-harm was under control, he didn’t make our sessions such a priority because there was simply so much going on. I’d have periods like this for a month or so when we wouldn’t meet. Often I’d make them longer by getting really mad at him for missing a few meetings and then I’d just freeze him out.

This past month has been a good example of him just not being able to be in contact with me. Every week I’d ask about that week’s schedule and he either didn’t respond or gave a day/ time and it ended up that he wasn’t in. I know he had perfectly acceptable reasons for this, upgrading the computers in this place, having to take residents to court ETC. But still it was a let down. This past Friday I was really struggling with self-harm thoughts which is big that I’d be struggling with them. I called needing to talk. I never got a response and he never texted edith which I thought he’d do.

We finally got him to actually stand still long enough to say hey can we meet and agreed on today. Well come to find out he couldn’t meet because court ran late with a resident. Then we were gonna meet at three this afternoon but the facility van broke down.

All perfectly reasonable.

So we’re shooting for tomorrow at ten thirty. On weekends they have one administrative type staff as the “manager of the day” basically to monitor everything around here. He must be that or just working the weekend catching up. Edith will be here to do some quick talking to me if this turns out to be another miss.

But it’s so hard. Every time this comes up I question whether I should keep seeing him for therapy knowing how inconsistent things can get. But then there really aren’t any other options. I can’t afford anything because any extra money goes towards food. For us to order out if the meals are really bad. I don’t want to go to a mental health center because I’m never able to connect with the therapists there who are often interns. It takes me awhile to build up a trusting relationship and it took a long time and a lot of ups and downs with Jonathan. But when I’m stuck here with only Edith and I’m really struggling with deep stuff, there’s only so much someone with a bachilors degree can do compared to someone with a masters and way more experience. Plus more of a history with me.

I’m starting to feel like I don’t even have a therapist reaching out last Friday and not getting a response was particularly hard. I’m feeling like I need to shut down my feelings because they’re becoming so overwhelming. I haven’t cut and likely won’t but am struggling throughout the day and just feeling terrible not having this support that I’ve depended on.

It just makes me wonder if I should just say forget I can’t deal with the inconsistencies. Or to just take what I can get in being able to meet whenever he can and accepting that as the case. It’s just really hard when I am having a very hard time depending on a meeting and not getting it or any contact. So it’s a really tough call. Perhaps something is better than nothing. And I know many people here don’t get therapy at all, surprisingly. You would think therapy individually would be a top priority. Now it might since we changed from a nursing home license but it’ll take time. They give all of the work of informally counseling residents to bachilors level people which is really not fair on anyone.

So yeah struggling with this decision and it’s always been mine to choose to keep working with him knowing these things come up. I don’t blame him at all.

So I guess will just see what happens. Likely I’ll just keep seeing him and just take what I can get.

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Book review: Hate List by Jenifer Brown

I just finished a beautifully written young adult novel. Hate List deals with issues of bullying, violence, , and one girls healing process to find herself when everyone seems most against her.

Valerie and Nick are seniors in high school. They’ve gone out since freshmen year. Valerie loves Nick and feels he’s a protective, funny, and over all good guy and boyfriend. His outbursts of anger do scare her, and she feels helpless when he’s constantly bullied by the popular crowd. As time goes by he becomes more and more withdrawn, associating in the past year or so Jerimy who does drugs and drinks a lot. Nick seems to focus a lot on death and suicide in talk with Valerie and others but they pass it off as some kind of joke.

What starts as a harmless outlet for them both is the Hate List. Valerie does not have an easy homelife which makes her relationship with Nick even more important for her sense of self and having someone she feels she can turn to no matter what. Her parents fight so often that her house is not a welcoming place. She spends as much time as possible with Nick. Still things get to her. One day in class she was writing a list of all the people and situations that were bugging her just to get it out. Nick saw it and asked what it was. He said she should add their teacher to the list and she laughed and agreed.

This turned into a thirty seven page notebook of all the things and people she and nick Hated. Mostly Nick. As time went on he became more focused on this, and they e-mailed back and forth about how they would want to kill people who should be added to the list ETC. The list became a place where they could let off steam. As this all took on a darker tone Valerie didn’t realize how close Nick was to doing something horrible. She had no idea he was going to do what he did on may second.

On this day a popular snobby girl broke Valerie’s MP3 player on the bus. She jokingly asked Nick to “get” the girl back for her. He was looking drugged and said something about finally finishing “this” And promptly walked into the cafeteria and started shooting. In Valerie’s rush to stop Nick she jumped between him and another girl Jessica, who was on “the list.” This ended the shooting when Nick turned the gun on himself.

Valerie was left with a bullet to her thigh and more painfully emotionally shattered numb, and then feeling like she has nowhere to turn. In the hospital she pieces this history together trying to figure out where things went wrong. Was she as guilty as Nick? Did she really hate these people enough to kill them? Did she want to kill herself? In the mediate aftermath of the shooting she was unable to have the time and emotional support to answer these questions. She had to deal with a detached and not very compassionate detective questioning her for hours and trying to get her to admit to things that she wasn’t even sure of herself. Angela Dash, a very unprofessional reporter seemed to have already painted Valeria as just as guilty as Nick and focused on the “victems” the students who died or were severely injured.

Valerie’s father didn’t even come to the hospital. Her mother was there physically but emotionally extremely unpredictable. Going from crying to screaming at her for going out with Nick in the first place, and though it’s unspoken it’s clear her own mother thinks she’s guilty.

Then Dr. Bentley arrives. A very detached and unempathetic psychiatrist who only sees a “disturbed girl” who “tried to shoot up the school” and who wanted to kill herself but didn’t get the chance. She is transferred to the psychc unit for ten days. This is more traumatic on top of everything as everyone knows who she is and they either ignore her or ask insensitive questions. Dr. Bentley continues to be totally insensitive and not understanding that Valerie needs to be there at all. She leaves feeling even more confused.

Fortunately when she finally gets home she is refered to Dr. Hieler. Dr. Heiler is the perfect therapist for Valerie. He is relaxed but direct. He doesn’t insist she start talking about difficult things right away. But Valerie has been so traumatized and the events have taken up so much of her mind that she doesn’t even remember things like what she used to like. To help her he lists things he likes to do including (jokingly) a back handspring. Then he gets up and pretends to do one when the subject they’re talking about in that first session gets uncomfortable.

This wins Katie over and she is able to trust him as time goes on. Seeing Dr. Hieler is the one safe place Valerie has. Dr. Hieler also sees her mother, and is able to keep Valerie’s mom from becoming so anxious over every little thing and give Valerie room to settle down. This doesn’t always work and there are some scenes where her mom panics and calls the police or books “emergency appointments” for therapy that aren’t really needed. Ironically at a time when Valerie really is in trouble at a party with kids from her school, the police aren’t called.

At the start of the book the huge obstacle for her is going back to her school where this all happened. Rationally she knows she was not in any way guilty and did not hurt anyone. She had every right to go back. Emotionally she knows none of the kids will see it that way. But she has Dr. Hieler’s constant support and so plunges ahead. She’s right. The kids either talk about her behind her back or directly say accusatory comments to her. One of the girls, who was shot in the face and is horribly disfigured, sees her and emediately leaves crying. The guidance counselor and teachers try to seem caring but Valerie can tell what’s behind the forced smile.

What saves her sanity over the months of being back ends up being drawing. Dr. Hieler is constantly reminding Valerie to “see things as they really are.” So instead of focusing on the bullying and superficial ways the girls in the cafeteria act she draws them as an aggressive pack or wolves. In this way she’s able to capture the essence of the emotion behind the faces and voices of the people she encounters.

Valerie’s biggest battle is how the kids at school treat her, but one girl surprisingly goes out of her way to try to talk with/ sit with her. It’s Jessica the girl that Valerie took the bullet for. Who was an enemy before the shooting. Valerie is suspicious of this. Her friendship with Jessica reflects the ups and downs of her healing process. As at first she ignores her, then when pressed to come to a student counsel meeting and help plan a memorial she reluctantly goes. She tries to handle the shunning by the other girls with Jessica’s support but still doesn’t fully trust that. When she is on a down spiral she distances herself from Jessica. On the upswing she reinstates their friendship. Jessica seems a solid extremely compassionate girl who is able to somehow flow with these changes.

On the homefront things continue to get worse. Valerie discovers her father is having an affair. Her mother continues to be an emotional wreck and thinks Valerie’s in all sorts of trouble when she’s not. Dr. Hieler had to have a lot of patience to deal with her mom more than with Valerie. She really can’t then depend on her parents at all through this. And the family challenges make things worse. She really uses Dr. Heiler as a safe place to draw strength from. And then after a session discovers Bea’s art studio. Bea is a very eccentric artest who seems to be extremely intuitive about Valerie’s emotional state and how to guide her to let her feelings out through art. Bea is an art therapist without the degree and truly amazing in how she is able to see what’s going on with Valerie and give her space to express it.

It is after she finally a year later visits nick’s grave and has an important conversation with a friend of his that she realizes she has to put thepieces of the tragedy back together, find her place in the events for herself and be grounded in who she really is. With the help of Jessica she is able to create a strikingly beautiful memorial and connect with the victems and families. And claim her place as a victim of the shooting, while at the same time owning where she went wrong with focusing so much on the superficial things.

By the end of the book things aren’t perfect for Valerie. Her parents are divorced. Her father is still extremely angry and unforgiving, her brother feels in her shadow. She doesn’t feel she can stay in this town after graduation. She doesn’t know where the future will take her. But she has a solidity, and an energy to her of someone who’s survived one of the most terrible events one can imagine, and who’s scars have become a part of her identity. In an empowering way. She has a core knowledge of herself and in a way is better off than before. She has more depth is ble to sit with uncertainity.

I deeply loved how this book was written. It’s not a simple don’t bully because horrible things will happen book. Everyone played a part in their own way in what happened, but not everyone just forgives and moves on. Everyone in the book is in their own process of healing throughout and by the end of the book things are open and unfinished. There is a telling interview at the end of the book where the author talks about how she likes open ended stories. And wants the reader to imagine where Valerie would have gone next. She also talked about how out of the two males, though Nick shot up the school, her father is the major villain. And victim in his own way. And how she purposely had her family have major issues and not be a fully supportive stable family, because that’s often reality. Trauma can bring people together, pull them apart or keep them the same. That in the end Valerie had to fight these battles within herself independent of her family.

I especially like Dr. Hieler I think he’s awesome. I actually laughed out loud at some of the scenes with him. He really reminds me of my therapist actually. A little unconventional, relaxed but amazingly skilled and creative. The author said that her husband is a clinical psychologist and after discovering the character of Valerie she asked him to do therapy with her.

I would highly recommend this book. It has so much c complexity and layers to it it takes awhile to read and digest. It took a few weeks for me to read and a few days to organize my thoughts for a good review. Obveously the major trigger here is violence. So this could be too much for many readers. As well as bullying. However I know it’s worth the read. And brings up wonderful insights and points to discuss. Whether in schools, between friends, or in therapy. Please let me know your thoughts.

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sensory aproaches with all disabilities

Hi everyone,

Many know that for like two years I’ve been trying to work with the clinical director here to set up a comfort or sensory room. A place where residents can go that’s warmly lit/ decorated, with comfortable furniture and can have a focus place to relax. Not relax like watch tv. Many do that all day everyday. Like a place for when someone is very anxious, agitated ETC and can go to try to get their mind off things and settle down. I didn’t really know much about it except I read somewhere about sensory rooms with developmentally disabled people and how calming they were. I then wondered if this had at all been used with other disabilities especially psychiatric.

I wrote a previous post about wanting to get people’s experiences with comfort/ sensory rooms on psych units versus restraint and seclusion. I didn’t go into detail on how to set up such a room, and especially set up such a space at home.

In trying to research this I got in contact with Karen More of the sensory connection program. She pioneered a specific program on how to create and best use these kinds of rooms to teach patients how to self-sooth and carry over these interventions to home. She’s an extremely nice woman and was glad to have in depth correspondence with me.

Below is her website.

So I’ve done a lot of talking with her and have gotten more and more confident that setting up a room would be easier than we ever thought due to the fact that you don’t need a ton of items just stuff that covers all the senses. And it doesn’t have to be expensive though I will say looking at the prices on the list of items she suggested stuff does cost like $30 or more it seemed like. However I didn’t go in depth about researching the price of such items. I keep wanting to talk with Jonathan about it and will send him info. Which he says he’ll read but then important stuff comes up like elevators breaking down, taking residents to court and other huge issues. And speaking of with the expenses of the elavators I doubt Tossi the admin will want to be spending any money on such a room right now. If I had literally any money at all that wasn’t going towards the possibility of getting food when it sucks here, I would try to set up a small space for my friend and I in here.

Hopefully when wwe ever move I will deffinetely have an area devoted to it.

Below are some suggestions to show how easy it might be to set something like this up. Taken from Karen’s materials.

Space should have full spectrum lighting, no colors or bright lights that would irritate the senses. Be in a quiet private area. Be used purely as a relaxation calming space not for sleeping. Half hour times in the morning afternoon or evening. Or before or after stressful event.

Furniture could be comfortable chairs or couches, rocking chair or glider, throw pillows/ blankets, beanbag chair. Visually calming things on the walls, paintings, nature scenes inspirational quotes whatever is comforting for you. Sound machine with as many sound choices as possible, relaxing CDS/ songs, maybe musical instruments like ocean drum, rain sticks chymes ETC. Could use hand lotions, aroma therapy oils or scented stuffed animals for comforting smells. Have different flavors of candy or other things to taste occasionally. Have a basket of stress balls, different textured items. Possible weighted blankets or lap pads, stuffed animals.

You can see how having a nice chair and a small collection of items could be the first step. It doesn’t have to be fancy and maybe some of these items can be homemade. I’ve heard of people making their own weighted blankets for example.

As I said if we had any say in furniture in here or the money to buy even a few things I’d definitely create a space for myself.

Also different people have different sensory needs. I think people being able to experiement and get a feel for what their needs are is important. Some people need total darkness no sound etc. I think the more people are able to carefully experiment with the stuff the more they can find ways that work to calm themselves.

I so wish hospitals would offer this both on medical and psych floors. I still think about those three weeks I spent in 2014 on a unit where there were no stuffed animals, they took away my rock. And my Braille note was unusable because they switched my charger with someone else’s. I had no sensory input tactially which drove me nuts or anything to distract me like reading or even anything to write with. I had nothing and my symptoms went into high gear. Which meant I was kept their longer. Especially at units where for whatever reason they don’t have any group activities to have stuff like this would at least help somewhat.

I would even imagine having a sensory corner in doctor’s office waiting rooms for all ages regardless of disability could be extremely helpful to try and calm anxiety before appointments.

I was recently upset to see a situation where someone would have benifited from a sensory space near them but was denied because they don’t have intellectual disabilities (though they do have other issues that could really benefit having the room for) and the person in charge believed that since the sensory activities couldn’t carry over to home it was useless. I so wish people would think more creatively and not put people/ interventions in a box thinking that a certain intervention or treatment can only be applied to certain disabilities/ sets of concerns. This is limiting for everyone especially someone who could be exposed to positive experience that would affect their over all healing but are denied them.

Would love to hear thoughts on if anyone has set up such a place even if it’s a comforting box of items. I have heard in DBT one is incouraged to do this to a degree for self-soothing.

So I welcome people’s thoughts.

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no paratransit recertification today!

Well after all the anxiety and getting ready and anticipation, no appointment today. Why? Because they screwed up!

There are two departments with different numbers. One that schedules your appointment to go for the recertification and one that takes you there. So it’s really confusing and no one is communicating and even they’re mixed up about who does what. We got down there all prepared. I was already getting anxious about getting down on time so we were actually early. Had to sit in the loud lobby with the door alarm going off and people yelling and just everwhere being their stupid Albany care resident selves.

So we waited like way past the pick up time. Then I called the number. Of course reception is bad in the lobby plus people were walking by yelling some weirdo guy refused to go to the nurse’s station upstairs and was getting all riled up. So I got disconnected from them a few times. Finally we went into the “little theater” where they have a huge movie theater screen and where a lot of residents literally spend their lives watching old TV shows. Old from like when my parents were growing up. Like Perry Mason or the twilight zone or whatever. So yeah at least it was cooler in there but still with loud TV which I hate. At this point I’d been bounced around between these departments a few times. I had been told I’d completely missed my ride and needed to reschedule. I hadn’t even by that point found out anything on where the driver even was which is why I called originally.

So I was so beyond upset. I’d been building up to this day and Just wanted to get it over with. So I didn’t have to think about it on my birthday. Since I’ll have all sorts of depressing things to think about on that day anyway. But yeah. And I was worried because now I would have a period between when my certification for now ended and when/ if the new one began. Which how it was supposed to go I wouldn’t have had that. So Jess got me up here and calmed me down enough to rest. She went and called these people because I couldn’t take it anymore. Well the department that sends info to the driver had the total wrong address. The other department had the right one so it was a total mistake on their part. Which they admitted. We’ve rescheduled for June seventh and they extended my current certification to July seventh to make up the difference.

So yeah not the best day.

In other hopefully good news I saw Mr. J today finally. I mean saw him like he actually stood still for the amount of time it took to ask for an appointment. And gave me a hug. Though I teased him that I probably shouldn’t be hugging him because I’m so mad. So yeah hope things will go well. I’m sure we’ll have our usual can you realistically be my therapist talk with all your responsibilities talk. And the answer will probably be yes within his limits. And I’ll have to accept that or else have nothing. So yeah hoping that will go well.

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recertification for paratransit tomorrow

So tomorrow’s the day. That I’ve been anxious about for like three years! Getting recertified for paratransit. One of my constant anxieties has been that when I go get recertified I won’t get paratransit. Everyone says it’s just a formality and I’ve asked a bunch of blind people on FB and they said mostly it is. Except TX where it’s a horror show. They literally check your blood pressure there to see whether you’re stressed while doing their evaluation! Well I was thinking my blood pressure would be through the roof anyway just thinking about it all! But isn’t that terrible?

Anyway so part of me knows it’s probably gonna be fine. But I’m still really worried that if I don’t get it I will have to like go to walmart on the resident van with the other annoying anxiety provoking residents and Russell driver who smokes goes on side trips sometimes and let the car battery run out once.

And that I wouldn’t be able to go see Robbie or other stuff like Take Jess to her college. And I would be totally devastated if I didn’t get it.

So yeah. It’s gonna be a very long day too. They’re picking us up at like one ten. Then we’re going all the way to ohare airport plaza. And then I don’t even know what they’re gonna do for the assessment. I remember when I first moved here the second day I was here my mom took me and we did the interview. The woman we got was really nice and understood all about mental illness. This was before I had stuff officially diagnosed and was on meds and things were way worse since 2013. I hope I get a nice person. And that we don’t have to go outside because it’s gonna be so hot out.

I’m so glad Jess will be there I couldn’t do it without her. Well I could but I’d be an anxious ball. Will take all my stuff like ipod braillenote and probably a stufty and my soft ball named Ally.

So yeah big day tomorrow.

In good news we have the air conditioning in, one elevator finally working again so there’s two out of three. And they fixed our doorknob.

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hard start to the day

So it’s Wednesday and not much has gotten better in terms of elavators here. They finally managed to get one of the broken elavators up and running yesterday afternoon. The admin of the building came on the speaker and said for us to treat it with extra loving care. Well people here have no idea what that means at all. By this morning it was down again!

And it’s like eighty degrees out now so super hot in our room even with the fan on and windows open. Trying to just drink lots of water. Can’t wait for the AC S to be put in. Not sure when that will be because the head of maintance is on vacation! Great timing LOL considering the still broken elavators.

Granted there are other maintance staff but Robert is the best one.

Then there’s our door/ doorknob. With the changing temperatures hot and cold all the time, it makes the wood swell and the door hard to latch closed. You have to aggressively twist the knob and lean into the door to do this. Well now the doorknob is very lose. We’re worried it will come off. Because it’s a special keypad doorknob we only trust Robert and Jonathan with it. Jonathan continues to be so busy he can’t manage to respond to an e-mail text or even hardly stop and say hi. So yeah don’t know what will go on with that.

Talked to my mom yesterday finally. Feel so bad for her as she’s still dealing with sinus infections and other stuff like I was saying last week. Headed to the Dr. again. I did explain about the money issue and food and elavators. She’s gonna give me more money but I still feel so bad about it all.

Anyway that’s about it for now. We’re gonna order out so we can stay upstairs. We really don’t trust the elevator that is running because it’s making weird ringing/ beeping noises. Plus we don’t want to be on there with all the hot sweaty people just to go down to eat food even Jess doesn’t want to eat.

So yeah that’s how things are for me at the moment. Want to write another really important blog post something I want to put a lot of thought into but it’s so hot I can hardly think!

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Disabled people are a neglected population in the human services world

In a time where it seems every human services profession throws around the word “diversity” in trainings, mission statements, and general discussions they are really missing the point. When people discuss diversity, and say they honor it/ specifically work with these populations they usually list: race, class, economic status, gender identity, sexual orientation. Notice something missing? Yes, no maybe? It’s disability!

It’s something that so many providers that claim to work with all types of people don’t acknowledge or if they do it’s in a surface way that almost makes you feel worse than if they just didn’t say anything. For example, a class on diversity could have in depth materials on sexual orientation, race ETC but have brief and inaccurate information on disability. This is because there are very few accurate examples of disabled people in the media, genuine disability centered interventions to teach students, or even students with disabilities themselves to speak about their experience. If there such students in the class/ school they are often not invited to speak, get their words twisted to conform to the instructors needs and generally are made to feel worse.

This results in human services professionals genuinely believing that they are working in a culturally sensitive way with all marginalized populations. If you search websites to find mental health professionals you’ll see whole catagories of people who say they’re GLBTQ sensitive, work with chronic illness, military personel, or even aviation professionals. But still the word disability is not included.

No one ever asks these professionals what do they think of when they first hear the word disability/ disabled in the context that they work in. Getting at their gut reactions is the first step to emotionally dealing with the biases they have so they can genuinely connect with us.

Here’s the fallout I see from this lack of understanding: (this is by no means an exhaustive list. I personally only have lived the reality of being blind, all other examples are empathetic guesses to the best of my ability)

Professionals in all areas of human services, who do not speak ASL, know how to access an interpreter, or know anything remotely about the deaf community. I’m just meeting some deaf friends, or friends that have deaf friends so I don’t know the extent of this huge oversight. But I’m sure it affects everything from going to the Dr. office, to trying to get an apartment. In the process of not being able to set up basic communication, I would imagine the person feels like they’re a bunch of nothing if the professional wants nothing to do with understanding their needs. If they don’t understand/ connect with them around their deafness and break the communication barrier how can they truly be an ally in the ways their job entails.

Blind people not getting written information in an accessible format, forms e-mailed to them or in large print, being politely and in a caring way guided around unfamiliar spaces, and given the decency to make their needs known/ make it clear how their blindness affects their life and not have it dismissed. I and my blind friends, have been in so many situations approaching human service professionals where this has happened. Have talked to friends where they need to apply for Medicaid/ food stamps/ job / doctor ETC. And they’ll just be handed forms/ mailed forms that are inaccessible. And the staff at such places will flat out say they don’t have time to help the person fill out the forms or know how to put it in an accessible format. This basically means the person is unable to receive services because they can’t even get through the basic intake.

I’ve had situations where professionals have guided me improperly, pushed from behind, grabbed my wrist ETC. I can sometimes have some leeway with this when it’s a random stranger on the street, but especially medical professionals should know you don’t shove someone around like that.

One of the biggest problems I see with being blind and accessing services of any kind (and I’m sure this applies to all disabilities) is there isn’t the openness to let me take the lead in discussing my blindness how it affects me and how it doesn’t ffect me. I can’t even go to a therapist/ call one without first saying I’m blind and getting the uncomfortable silence or change in tone of voice that means we’re now in a totally different dynamic than we were before I mentioned this. I’ve walked into a psych unit and was told the reason I was there (my second time) is because I’m depressed that I’m blind. When I tried to say different, they basically ignored me. Even a staff member who I really like where I’m living truly believes I’m “too smart to have mental illness.”(a whole other issue of not understanding!) and my only issues come from being blind. Being blind, my blindness. How often has that stopped me from getting things I want or need from professionals who say they work with anyone.

When I was towards the end of college I really was worn down by my family and the emotional abuse/ alcoholism that was going on. There wasn’t physical abuse but it was still really not a healthy place to live. I had been staying with friends, but thought maybe someone else could help so my friends didn’t have to take the responsibility. I called a few domestic violence places. (because abuse of a person with a disability or elderly counts as domestic violence). Well it might be in the definition but it’s not on anyone’s mind. They flat out didn’t know what to do. They struggled to understand that no I didn’t have transportation to just get away, no I couldn’t just go ahead and rent an apartment ETC. One person even said that they wouldn’t take me in their shelter because they couldn’t handle figuring out how I’d sign documents and me being able to get around the place. They suggested I go to a shelter for the blind. I think I hung up on him right about then.

It’s stopped me in being able to volunteer. Long story I’ll tell in another post about how I was totally dismissed by this supposedly caring hotline. It’s even stopping me now from even being considered to look into group homes because of the “liability.” People use that word liability so much and often I don’t even know what they’re talking about. I mean yeah I do, like if I god forbid fell down the stairs and decided to sue them. But most of the time they just say it like that’s my cue to just go away and they have no answers. And then other abled people make excuses for them and actually defend them and still there are no answers. They’re like well it’s a good thing that these people are being honest because you wouldn’t want to work with them anyway if they can’t meet your needs. I’m like yeah but if every single organization in whatever category says we can’t meet your needs where do I go? Total silence.

I honestly don’t know very much about other disabilities and how lack of understanding by professionals, and often what looks like not even wanting to try to understand, affects everyday lives. With wheelchair users I’m sure more places are not wheelchair accessible than those that are, or claim they are or want to pretend just to make themselves look good. And because I don’t know their experiences, I don’t know how it is that people who can’t use certain parts of their body, arms hands ETC are treated and not given the time of day. Similarly I don’t know much at all about people with developmental disabilities. Except that on paper I’ve noticed that it seems like they get a lot of services and are more represented in the media. But I could totally be wrong.

Like I keep saying and having validated by my friends, the first step is within our own community. Not just the blind community, deaf community, whielchair users ETC. But across disabilities, us really getting to know one another playing on our strengths fighting for each other. That has to be the foundation. We have to work together and depend on each other, give to each other and ask for support from each other. Because honestly a huge part of the rest of the world doesn’t care. Or they’re too busy to take a minute to understand. Education is important, and somehow we have to get more people who are open to learning and connecting than less on our side. Then slowly things will turn around. But the core of the support we need has to come from within.

It would help if some things just became common place. In the same way there is now, hopefully a greater acceptance of different sexual orientations and safe spaces around that in general. It would be a good first step for some of the following to happen. ASL being taught as a second language in all schools. Units on disability, accurate portrayals with guest speakers being implemented from elementary school up. The hiring and genuine encouragement of professionals with disabilities working in the field. Having documents in alternate formats as a matter of course. All buildings being wheelchair accessible. With these concrete things, (well the hiring thing isn’t so concrete and for another post) these are good steps forward. I mean there are French and Spanish and Italian and probably german taught in schools/ colleges everywhere. Why not ASL? I mean I may be naieve but how hard would that be to do? Even easier how hard would it be to have forms on a flashdrive so someone can fill them out that way, have the forms in an accessible web page online, or just have staff with the mindset and patience to kindly help someone fill out the forms?

Please understand I’m not saying that every single therapist, doctor, housing specialist, social worker ETC is totally dense. I’ve run into some awesome people. People who from the get go were just extremely intuitive on the subject. And people where we went through a real struggle to be on the same page but our relationship was stronger for it. And someone genuinely trying even if it’s a little is better than nothing which I am seeing being done. I’m saying by and large. The degree of acceptance and genuinely wanting to connect that you see with other populations is nowhere near as present with people with disabilities. Even in the disability community. Like I said I don’t know very much about some disabilities. I will learn. And I think a lot of people have their hearts in the right place and want to learn. It’s just gonna take time. And to have more people moving in the direction of being open to learning than not. Questions? Comments? Please tell me if I missed something, said something inaccurately or if you have a story to share.

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how to emotionally accept a tough situation

Hi everyone,

Have really been trying so hard to work on this since yesterday. As you know have posted a lot about how I’m feeling. While getting my feelings out doesn’t make them worse, I can’t keep having these strong feelings. I’m both a very rational as well as very emotional person. So I can know something totally rationally and emotionally be in the opposite place. And I want to solve problems quickly. When I can’t I basically go crazy internally and that used to lead to unhealthy coping.

In the past when I felt very strong emotions that I couldn’t stand the ongoing intensity of, or others told me I shouldn’t feel that way I would self-harm in order to keep my emotions regulated and stop the whole process.

I’ve been having self-harming thoughts lately due to the feeling of being trapped in a bad situation, as stated in my previous posts. Not just the living situation which is the biggest unsolvable (at least short term) problem, but the others like no therapist, food issue/ money ETC. So I’ve been having these thoughts. But I can talk myself out of it. And haven’t acted on them at all. But it takes a lot.

And I know I’m feeling this way because I’m not in control of the problem.And it’s not like I’m sitting around thinking negative thoughts about all this. If anything it’s the opposite. I sit consciously telling myself exactly why this is happening, what’s positive about living here and everything else. But I can’t get that to translate to the emotional level. Continuing to let out these emotions is difficult on everyone. Firstly I don’t have very many people skilled in handling my strong emotions around. By very many I mean no Jonathan. He’s like the master of Sam. But he’s nowhere to be found. He just must be so busy with work and stuff and as I said I realistically wonder if he can actually see me for therapy and if not I don’t have money for a new therapist and don’t trust whatever Medicaid might throw me.

But anyway. I do have Edith. She says I should let myself feel how I’m feeling. But I’ve done that and it’s not helping. It’s not making things worse but it’s not helping. I just need to somehow feel that I know I’ll eventually solve these problems and things will be ok. I just want to feel that but I can’t.

Furthermore the other really trusted person that can take my intense emotions is also having intense emotions of their own and not doing very well. If she’s in a hard place and I’m in a hard place it’s not good for both of us. She’s the one who usually has problems opening up. I want her to feel able to talk to me. So really want to be strong for her.

So it’s really difficult. Maybe if I just tell myself enough times the healthy thoughts it will eventually get the emotions in line.

It’s all I can think of to do.

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