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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Book Review: Beside Myself by Ann Morgan

This book explores themes of identity, deception, and mental illness in a gripping intricate way.

At six years old twins Helen and Ellie can’t be more different. Helen is always praised for her schoolwork, helpfulness at home, has many friends. She’s also in the role of looking out for Ellie who is a slow learner with possible brain damage from birth trauma. She is emotional and a step or two behind on everything. Helen enjoys “teaching Ellie lessons” which usually envolves some kind of prank or cruelty.

One day when out playing Helen decides to surprise their mother by having she and Ellie switch places just for the day.

At first it takes Ellie a bit to understand the game. But when it works out well with someone in the town who knows them they go home to do it with their mother. Only to find her new boyfriend moving in. Helen is so shocked that she doesn’t say anything about the switch and of course seeing the clothing and hairstyles their mother never suspects anything.

Helen wants the game to be over but Ellie feeling what it’s like to be in a leadership/ more powerful role does not want to switch back.

No matter how many times Helin tries to tell people she’s not Ellie no one believes her and everyone treats her as Ellie. To the point where years later she doubts that the switch really happened.

The book shifts between the past starting with the game and the present. In the present Helen is confronted with the fact that her sister has been in a car accident and is in a coma. This puts her face to face with all the people from her past that pushed her over the edge where she is now, in a disgusting apartment with no money or food and thrown around by the wims of her bipolar disorder and psychosis.

While Ellie as Helen (or as Helen puts it Hellie, a kind of warpe version of how Helen sees herself) grew up to be a TV star. But her life has not been free from hardship as she too has bipolar disorder.

As Helen navigates this present situation she faces her past childhood issues including sexual abuse, drinking and drug use, and broken relationships.

By the end of the book she has made peace with her sister, has finally let go of her family and their hold on her and is forming a life for herself.

The book portrays so well the feel of bipolar disorder, the highs where everything seems possible and the lows where just being awake is painful. The taunts of her psychotic voices are also realistic.

Though the whole people switching places and no one knowing is unrealistic, everything else is so true to form that this is soon forgotten as the switch itself was.

I highly recommend this book. Listened to the audible version.

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Now I know how sighted people feel with a blindfold on, wearing super good headphones

Have wanted to write this for awhile but don’t want to offend anyone.

So my headphones I got for Christmas somehow magically broke. Wouldn’t have anything to do with me throwing them and my player off my bed every night when I’m half asleep or shoving them places.

So it was right at the bed bug time and I asked for headphones because the first thing I got back was my ipod. And Jonathan had these really good new headphones.

These headphones are like ya know when you go to a store that sells CDS or whatever, and the headphones are like really good. With this heavy duty foam material and like almost cups over your whole ears? That’s what that’s like. Plus in the ear part they also have a layer of the regular spongy foam normal headphones have. Plus they have a remote control that adjusts volume and what side the sound comes out.

So this is the part where I don’t want to offend anyone. I don’t want to say I have hearing loss when I wear them, but it does affect your hearing. I don’t mean having stuff up loud. I mean actually just wearing them. Everything is muffled which is kinda nice. The next time there’s a fire alarm I want to grab them on the way to the dayroom and see if it makes a difference to my anxiety.

But like Jess will talk to me when they’re on and sometimes I don’t even know she’s talking. Or I hear her and I get like the last word of the sentence or something. Sometimes because I don’t want to take them off I’ll just try to answer her based on whatever I heard and it’s really funny. Because what she said and what I heard are like totally different.

It’s interesting. I’ve never had that experience with hearing before. There was this show called A Walk in your Shoes where they had this guy put on these headphones that simulated being deaf and he lived with another deaf kid and his family for a week or something!

They did the same thing with a blind person, people from different countries, religions ETC. I wish it was still on or on youtube.

Win for accessible digital media project: Switched at Birth now completely audio described on netflicks!

So yeah! Was so completely thrilled to find this out today!

Robert Kingette and I, and the rest of the group have worked so hard and connected with some very awesome people to slowly make this happen.

I’m just beyond grateful. This is gonna open up a whole new audience to what is already a ground breaking show for people with a variety of disabilities.

But mostly as I’ve said time and time again, I feel it could be a good bridge between deaf and blind people, whether deafblind or blind hearing. We have more in common than you think even though that probably sounds really clechai. So yeah like I said I can’t write the huge smile on my face right now I’m just like beyond woreds!

Book Review: Hurt go Happy by Ginny Rorby

I think this is one of my favorite books.

Joey is 13 years old. She lost her hearing at six under tragic circumstances. She does not know sign language beyond the alphabet, and a couple words, she knows the sign for deaf, but that’s about it.

The reason she doesn’t know is that her mother insists that her deafness will be less noticeable and that she’ll “be normal” if she reads lips. Her mother doesn’t understand how imposible this is at times, and Joey shows us through broken dialogue, and relationships that she can not even directly communicate in how cut off she is.

She’s doing terribly in school due to having trouble with the work, and understanding what’s being taught. Hearing aids don’t help very much.

She has one friend Roxie who’s mother is deaf and who taught her a few more signs. But she always had to not use them around her mom.

Joey’s life changes forever when she goes mushroom picking, one thing she and her mother have in common. She ends up on Charlie Mansel’s property. After trying to angrily drive her away he realizes she’s deaf. It turns out both his parents were too. One was in a family that incouraged ASL and the other lip reading and oral speech. He strongly feels that learning to sign opens up possibilities and connections that a deaf person would not have otherwise.

The biggest surprise is meeting Sukari a chimpanzee that Charlie and his wife got from Africa when doing vet work over there.

Sukari is very much like a young child and can sign very well. Joey is won over by this human like animal. She feels like she can totally be herself in Charley’s presence and feels her life start to blossom with connections as her ability to sign increases. The relationship so detailed between she and sukari is magical. Sukari wears clothes sleeps in her own room, is poty trained and many other human like things.

The conflict around Joey signing gets more heated as her mother learns about Charlie and Sukari. As Charlie becomes more frail and ill he confronts her mother about the reasons why she wouldn’t let Joey sign. This flashes her back to the trauma that ended her daughter’s hearing loss and forces her to face the painful reality of how she held her daughter back.

In the months after this confrontation Joey’s relationship with Sukari charlee and signing grows stronger. Her mother softens and enrolls her in a summer ASL course but even then is not thrilled by the idea.

When Tragedy strikes Charlie and Sukari her fate is in Joey’s hands. Tragically she does not come to find that information until Sukari has been placed in traumatic circumstances. Joey takes control of her life and her friend’s and does everything possible to get her to a safe place.

The determination and people she meets along the way bring out more and more of her personality and feeling of being the center of her life and not allowing her mother, who she’s relied on but who has also held her back, to decide for her. For a 14 year old she has depth and maturity that is rare and yet very believeable.

We learn things about Ruth as well that give us insight into her whole personality and inner pain.

Another huge thing that I liked was the description of many signs. This book made me really want to learn ASL and get a signing chimp!

The book covers such a variety of issues. Deafness, the debate between lip reading/ oral communication and ASL. Animal rights. The life of chimpanzies. And so much more.

Would love to hear people’s thoughts on this book.

ICarol crisisline software and accessibility

Hi everyone,

Wanted to let you know about my new project which is actually quite easy.

As you know I connected with national runaway safeline in 2016 around the possibility of volunteering. We only got to have one meeting before deciding that at the moment it wasn’t the right time. I’ve happily done some other volunteering. I am thinking of trying again to reconnect as the invitation was open for me to do so in a year.

Looking back at my notes, the site that they use to manage their whole system, shift scheduling, call logs ETC is called iCarol.

So you would log into that site and have access to everything you’d need as a volunteer and staff manage everything they need from there as well.

I only had an hour to play with the site when I went over to NRS. I noticed a couple accessibility issues but obviously don’t remember everything. This weekend I learned more about just how popular this software/site is.

Here is a testimonials page where you can see many well known hotlines and services use this website

So basically if you want to volunteer somewhere chances are you’re gonna run into this site!

Which is why it’s extremely important that it be fully accessible to those with all disabilities. The organizations that use the software don’t have control over this, they don’t actually build the site so we need to go right to the source. So what would be great is if everyone, whether you volunteer on hotlines or not could just write a wuick note to this address

Just saying how important it is that the website be compatible with screen readers so volunteers and staff who are blind and visually impaired can use all the features. They wrote a very short statement in 2013 saying they were making “the best parts” of I carol accessible. I’m hoping in four years they’ve continued to do this. It’s gonna take as many voices as possible to keep on them about it.

Better yet, if you’re reading this and know all about assistive technology and accessibility and can write them from that perspective and connect in that way that would be great. I know it’s really hard to get jobs in that area if you’re free lance and maybe you could work with them. Maybe they’d pay you I don’t know. But it’s worth a shot. If they’re as open to doing this as they say they are they’ll at the very least appreciate the feedback and offer of your skills.

I’m hoping we can be successful with this because clearly it’s impressive software if so many people are on board. Thank you for helping with this.

hiarcuts and subway

Today was very productive. It was sunny and cool out. Jess and I went to Betty and Nicks for our haircuts as usual. Only $5 each highly recommend!

Of course that took about a half hour of the hour and a half time we were stuck there. So we walked to subway crossed a busy intersection and both survived, and got subway. It was great to not have to deal with dinner as in going down there.

Had some upset stomach later after my bath which I took right away to get the little hairs off my neck, and a nap so who knows. They had this really gross turkey for lunch so that was probably it.

But anyway I’ve had a mostly chillaxing afternoon other than that.

book review: Tiney Prisoners by Maggie Hartley

I just finished reading another memoir by Maggie Hartley. This is about her fostering journey with two very young siblings.

Two year old Evie and three year old Elliot come into care after a neighbor finds them terribly neglected and starving.

When they appear on Maggie’s doorstep they are more like animals than children so incredibly terrified of the world around them.

At the time Maggie had several other children with her, Tess and Sam who she was fostering long term. Sam has developmental disabilities, vision and hearing loss. And Pete her biological son.

These children become role models for Evie and Eliot as they learn how to engage in life. Evie is very clingy and is either hanging on Tess or Maggie. She uses words like bitch in every day conversation as that’s how parents talked at home. That quickly drops off as Maggie and the family model appropriate ways of talking.

These children had no idea what a washer was, why you would wash clothes. What different foods were, or how to play. They’d just sit there and stare at toys and at Maggie and the other kids when they engaged in play. It was months before they were able to actually play like any other child.

Maggie worked very systematically on different goals with the kids. Getting them to eat, engage in every day activities around the house. Then slowly to be ok in the car, walking outside, with others around ETC.

She was gentle but persistent that these kids would engage with life and slowly dissolve their fears.

They had obstacles put in place by social services of all things. The social worker Karen was someone who seemed to go by the book and not care about the kids at all. She insisted on contact with the children’s mentally ill and a drug and alcohol dependent mother. Even though she barely showed up for contact. When she or a taxi tried to take the children they wouldn’t allow Maggie in to the room. The children then went into meltdown mode and were inconsolable.

It was no wonder that every time the doorbell rang the children would run and hide behind the heater and it would take hours to get them calm again. Every time the doorbell rang in the past it was likely a social worker coming to take them away, or the police.

Maggie fortunately had a great supervising social worker named Simon who was totally in favor of Maggie’s approach with the kids. He eventually worked to stop contact as there was no point and clearly the mother was doing nothing to work towards getting her kids back. It was at the last contact, which Maggie and Simon attended and the kids somehow made it through, that it was clear that the mother treated Evie like a doll and totally ignored Eliot.

The children’s father was in prison. It shocks me that Maggie was not allowed to take the kids to visits with the mom at social services but was expected to take the kids to visit their father in prison. At the first visit their father was in a “open prison” which I’ve never heard of. And so things were more relaxed. Eliot clearly had bonded with his Dad and had a few positive memories. Evie wanted nothing to do with him but managed to hold out ok during the visit. By this time Maggie had established a good way of getting the kids out and doing things is to carefully explain what’s going on and to make the focus something she knows they like. Like taking them to the store but having it be about shopping for favorite slippers. Or visiting their dad but having the focus be feeding the ducks at a park. This allowed them to get through their fears enough to do something enjoyable.

At the point it was decided that the children would be put on track for adoption they went to say goodbye to their father. This time due to violent incidents he was in a more hard core prison. What we think of as prison. All locked doors and huge visiting room. Maggie even had trouble there getting into a real panic while trying to keep the kids calm. The prison had kindly found a small office for them but it was way into the building. It was amazing that the kids got through that visit. And sad for Maggie to see their father break down about losing his kids.

After that things moved to getting the kids ready for adoption. They first though needed to get used to being apart from Maggie. She took great care to find preschools each tailored to the individual child’s needs for the kids. At some points she was more anxious than them but it ended up being really positive and they gained so much from it.

They were able to do some play therapy with a really good therapist named Anna. It was nice to see therapy take place before a child was placed in long term/ adoptive care. Anna was then able to write up her reports on the children’s issues and what would be best for the kind of placement they needed.

Karen rather insensitively said a month or so into the placement that the kids were “unadoptable.” Due to their emotional issues. Maggie couldn’t believe this, nor anyone else. It was through Maggie and other’s persistence and unconditional support that both kids were able to be placed in a really good adoptive family.

I was really really impressed with Maggie in this book. She really knew how to work with deeply traumatized kids. I was also impressed with the children’s ability to take in the nurturing and structure and shed their fears and attachment issues in a relatively small space of time. Sadly this is often not the case. Foster parents get kids and are totally unprepared for the types of issues they have coming through the door. So they just don’t know what to do. And they don’t have the kind of help from social services that Maggie had with Simon and Anna. I highly recommend this book. It models how to help children in a connected healthy way heal from trauma.

Good day caught up with Callie old caseworker and had a walk after dinner

Today was really good. Had a long chat with Callie. She was my second caseworker and left in 2014. She’s now the ombudsman assistant. She really likes going to different facilities and checking things out. She worked at a skilled/psych facility for a year or so she also liked that.

A couple of former PRCS now work over there and she had news about a few others that had worked here when she was there.

She actually hears the big gossip because I guess PRCS are pretty connected so like she knew about Ms. Billy passing away and stuff.

Anyway we talked about moving to a smaller SMHRF. She has heard good things about Margarett Manor north. Which we already know. Doesn’t really know of many of the facilities in Chicago.

But is in support of us doing what’s best for us and impressed with how well we’re doing. So that was an afternoon affair.

Then went downstairs and sadly no Jonathan session. He was in a meeting. Sigh. Wanted to especially talk to him about burnt out Anna and other stuff. But yeah hopefully next week.

Other good thing was went for a walk with Jess to Maine foods. We got oatmeal for me we usually get it at walmart but will be going next week and also got a bunch of snacks plus ice cream bar. It was nice to get some fresh air.