tough issues book club

Hi everyone,

So I’ve created the group I mentioned in my last post.

https://m.facebook.com/groups/1179269488750914?view=info&ssc=0&_rdr

As I mentioned this will be a place where we can discuss any fiction or nonfiction book dealing with hard topics. Mental illness, surviving abuse/ trauma, foster care, the death of a loved one, ETC. In this discussions I hope we can learn about new books we haven’t read before and also meet like minded friends. As well as support others who are dealing with these issues.

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considering making an FB realistic topics book club

So have been considering this idea for awhile.

I love reading books about things I’m going through or that others in my life have gone through. This includes fiction and nonfiction around various mental illnesses, disabilities, being a foster parent ETC.

There are probably thousands of books on this subject.

I’m wondering if people would like a place to discuss these books and our reactions to them. I’ve written many book reviews and have heard some reactions from my close friends around similar books we read but haven’t had a wider discussion. Thought it might be a way to bring like minded people together and by discussing these books it can bridge to other subjects of how they effect us personally.

Thoughts? I may create the group and just take it from there.

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depressed about volunteer work

Hi everyone

I am pretty depressed. Around my volunteer work which is basically my job. It keeps me going and like I have a purpose and motivates me. It takes my mind off my own issues.

I’ve loved working with the organization I have for the past six months or so. It’s an awesome community and I’m doing well at the job.

However as all organizations I’m sure do, they’re trying to keep up with the latest and best technology updates. This is great but often technology for the blind as it is is not capable of working well with a certain website/ software as soon as that product comes up. Someone who’s an expert in accessibility has to come in and do whatever they need to do to make everything work together.

The problem is some companies don’t want this. In my organization we were using a webeniar platform for live training sessions. This was not accessible to any screen readers. I and several people called the company and they said they had no plans to work with the blind, though they did have accomidations for the deaf. So yeah we were not happy.

So anyway lately it seems like the organization I volunteer with is making a lot of changes. Which while giving us all perks we might not get otherwise often make accessibility harder when it was fine in the first place.

They had a scheduling system for times when volunteers would be on the site. It was absolutely fine. In favor of getting an ap and some other reasons, they switched to another product which is not accessible to PC users. So anytime I need to schedule something I’d have to have staff do it. When before I could be independent.

They did something else recently on the site which I can’t go into due to confidentiality and not wanting to go into specifics. But again it was a case of the old way working fine. With the new way I found I couldn’t even participate in what I was supposed to be doing because I couldn’t find what was supposed to be on my screen or even know what was going on with the process when staff could see from their end but I couldn’t. This stressed me out because a consumer was l.eft hanging due to me not knowing what was going on.

Lastly for another aspect of the volunteering they’ve decided to use a tool called SLACK. Whicvh is like IM for businesses. Never heard of it until I got the e-mail. Warily I sent the info to my tech buddy who confirmed my fears that it isn’t easily accessible and won’t be til next year.

Obveously the organization can’t cater to the few people with special needs nor would I expect them to. In spite of my and I’m sure some others regardless of any special needs, view that if something isn’t broken why fix it, this is the world of technology today. People keep making these products so you can throw away the old way, which was like not that old, and pay more money for the new thing. They’re an organization trying to propel themselves forward in the field they’re in. Their whole purpose is using online services to help people and so those services need to be as up to date as possible.

I know that it’s either my choice to do the extra work to try and make something inaccessible half accessible, or just move on. This is the case for so many blind/ visually impaired people doing similar things including work at home jobs, call centers ETC.

I really really want to stay with this worik. Like I said it has connected me with a lot of great people and I’m passionate about helping others. It’s gotten me to use my skills in counseling/ psychology that I thought I’d never use after my breakdown.

But I don’t intend to fight an uphill battle and especially with things with the issue where I had no idea what was going on due to a tech glitch I would never want to leave a person in need of help hanging deue to not being able to do the job through no fault of my own.

I don’t know where to draw the line of when it’s time to leave. Knowing that these updates will keep coming and I’ll keep running into accessibility barriers it seems at least for the past couple months pretty regularly, makes me less excited about doing the work. Understandably as there is added frustration.

On a similar line as I posted Wednesday I think it was about NRS. Jonathan still hasn’t heard from staff there about their technology and if it will work with mine. Something I wanted if all possible an understanding of to avoid wasting anyone’s time, before I went down there for an interview. And to avoid feeling horrible in person in front of everyone if I found out there and then that there was nothing that could be done. Better to find out and have the meltdown at home.

I’d tried in several ways to ask people about accessibility issues. But I was put off and told all my questions would be answered at the orientation. So I got Jonathan to step in as he’s quite assertive and I knew would get an answer. But so far no call/ response.

Again their job is not to jump when a person with a disability calls and asks for something. They may well be so pressed for just getting volunteers in that it’s not really a priority to respond to one person’s needs. So I’m getting depressed that this one hotline that’s been like my dream of working at since I came to Chicago won’t work either.

It wouldn’t be so bad if there were other similar organizations but there don’t seem to be.

I don’t know what I’ll do with myself without these outlets on helping people. Edith wants to send me to a day program which I don’t really want to do but I guess will if I have to.

Will probably know one way or another at least about what Jonathan is trying to do on getting ahold of people by next week.

If anyone has any other thoughts on online volunteer oppurtunities around emotional support please let me know.

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reconsidering national runaway safeline again!

You’re all probably as tired of this back and forth as I am!

But talking with Edith and Jonathan again I’m reconsidering it.

One of my main anxieties is getting all ready to do it

And then head over there only to find out that they can’t accomidate my tech needs. So I can’t even get a fair interview like everyone else because that’s in the way. Knowing whether or not they’ll be ok with me using my screen reader on a flash drive or logging into their system with my laptop will probably make the decision for me.

I decided to have Jonathan make calls to the tech person over there. Will see what he says. Then take it from there.

I feel so confident when Edith is around saying I can do it. And then I think the training is really only four evenings out of my whole life that I’ll have to be out til ten. It would really increase my confidence if I could do it as it was something I used to do no problem. I’m really hpping Jonathan’s conversation with the tech person will go well. I laid out step by step in an e-mail what I would need. It’s of course a quest6ion of simply whether their software system is compatible with NVDA. Which I really hope it is.

So I’m thinking good thoughts and impatiently waiting.

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would people be interested in me making vlogs again?

Hey everyone,

Was wondering if people would be interested in me making youtube videos again. I stopped because it was a struggle to keep up with both this and my blog and I wanted to focus on my blog. I’ve gotten a lot of great followers. I know the videos aren’t wasted and am glad they’re out there. It was hard not getting any feedback on them.

But if I made a video like once or twice a month would people like that?

I will be making a video on my FB group that perhaps people can share.

Will see what you all think.

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Not doing national runaway safeline because of severe anxiety about evening trainings

You know, I’ve had so many mixed feelings about national runaway safeline. But things have finally come to a head where at least for the foreseeable future I’ve decided I can’t do it.

I’ve been both extremely excited and extremely anxious. when I was in MA looking ino Chicago I was looking into possible volunteer oppurtunities. I’ve always done well with hotline work. It’

Even the kind of thing where the barrier of disability isn’t as big. You don’t need to see to provide a listening ear. It’s become my nitch.

I saw the videos on youtube at the time. I was very curious about this organization that’s around since the 700s has done to help youth at a very low chaotic point in their lives. Those in the process of running away from home, considering it or actually on the streets. I wondered what techneques would be used to help them sort out their thoughts and feelings at such a confusing emotional time. As well as provide peace of mind to the families that call in.

When I got here to Chicago it took awhile to settle into Friedman Place. Then I got busy with different activities to help out the organization. In august 2013 I went to an internship fair at addler school where NRS had a presentation/ was there. the volunteer coordinator seemed very nice and e-mailed me information. As I said I was very busy and it just wasn’t the right time.

And then november hit and I had my breakdown. Up until I got the confidence through talking with Jonathan Edith and Jess to pursue CTL, I never thought I’d get back into hotline work again. I was delighted to be able to do CTL from home. However NRS was still on my radar.

When Jess was doing goals with her caseworker for the new year I felt kind of left out so she and I did goals as well. Of course top of the list was NRS. I just had to get going on it.

ButI had concerns from the beginning. The former volunteer coordinator who I met at the college was no longer there. I was worried about how they’d see my disability/ react to any accomidations I’d need. Granted they would be small. Having training materials e-mailed to me. Being able to use my screen reader on their computer. I was anxious from the start about the training schedule. I guess they want to get new volunteers in as soon as posible. Because they pack the forty hour training into two weeks. Two week nights would be from six thirty to ten. Two weekend days from nine to five.

I’m used to my relaxed routine of naps during the day, and a quiet nighttime routine. With going out there would be getting food to deal with and meds to have ready by the nurse. It’s a process.

I was worried about getting anxious during the long trainings and it all throwing me off for the next day.

However everyone was like you can do it no problem and everything. I think that pumped me up to do it though it wasn’t really realistic.

Though I used to go out all the time, to support groups, a therapy group, and when doing the domestic violence hotline to their similarly structured forty hour training, that was before my breakdown.

Then I’d probably get home at ten thirty and then stay up til midnight then sleep half the day the next day. I wasn’t so anxious and my mood so dependent on a structured routine. I’d gone back and forth for awhile in other ways. Wednesday was a hard night. I just got frustrated with computer stuff I was doing plus having had waited too long before eating a snack so getting an upset stomach. I just fell into this depression about how my anxiety seemed to just follow me. That if I was having anxiety of something small at home how would I cope in the real world outside Albany in similar situations. I just wanted to quit everything. Not suicidal at all just quit my activities that were giving me confidence and purpose but I felt would always be held back.

But Jess and I talked towards the end of Thursday. And I felt a bit better. I got the excitement back of doing NRS.

Then yesterday we were going over when paratransit would pick us up. The orientation is from six to nine thirty. I said with interviews and everything we could probably get away with leaving at nine. Though with training if it ended at ten we’d be leaving at ten. It brought home the huge stress of those night trainings and I just knew I couldn’t handle it. I just couldn’t. I’d embarrass myself by getting super anxious. I just couldn’t.

Jess and I both were tired of my back and forth. She said to decide once and for all at least relative to the next months. I said no. That if the training were during the day I could but not now.

I wrote the coordinator telling her vaguely that I had health issues that affected me at night. And that I had tried to work around those but couldn’t. And if the trainings were offered during the day I’d be sure to apply again. But I know it’s unlikely they’ll do trainings during the day. They do them on nights and weekends because people are at work or in school the rest of the time.

I felt horrible just horrible. Like I said this was huge for me this hotline. To continue my hotline work and to have it on my resume that I worked a year on a national hotline would put me in a very good place for other hotlines.

Jess says we all have limets. And that it can still be a goal for me to do NRS that I could somehow get comfortable with going out at night. I don’t see how.

I don’t know what’s worse all that anxiety I had about doing it or being depressed because I can’t do it.

Jess sent me some hotline links. You’d think in a major city like Chicago there would be a ton of choices as there are in Boston. Probably a lot has gotten cut over the years. Even the suicide lifeline for the area is staffed by professionals, at a really bad mental health center in fact. Other crisis hotlines come out of hospitals. We found a rape crisis hotline out of a YWCA. I sent an an application form. But I’m sure it will be the same evening trainings. And I really don’t want to work with rape survivors. At least nit right now. I really wanted to work with tenes and to see how NRS managed to help teens in such a difficult place.

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FB page for a friend of my sister’s who comitted suicide

Hi everyone,

I wanted to share this link with you all.

https://m.facebook.com/groups/742149375916458?refid=27

Megan was a good friend of my sisters. They went all through school together. I remember her most coming over our house she was very bubbly and outgoing. She was very open and friendly and didn’t stare at me like her other friends did because I’m blind.

I guess it was no secret that she had mental illness and she was very open about it. It says here that she helped other girls who were going through similar issues.

She severely self-harmed and attempted suicide in the past.

She killed herself last weekend at her college.

Everyone was devastated. They had a tribute to her Saturday and it was very well attended. Her FB post shows how many people cared about her.

On a sam trying to be funny side note, I wish they’d say some original stuff! I mean if I was her reading that which I’m sure she has a laptop where she is, I’d get tired of people saying I was beautiful and lovely. That’s just not her personality from what I knew of her and heard about her. She’d probably be like “ just say I really miss partying or something!”

But seriously. It was very sweet.

Really hit home though. As in 2013 November 10 to be exact I almost ended my life. Well almost tried to. I couldn’t do anything before someone heard a crash and stopped me. But had I had more time I probably would have seriously hurt myself if not killed myself.

I was in such a dark place. I had also had a seizure that day from meds. That and everything just built up from months of running away from my feelings just pushed me over the edge. I truly felt like I was a burden to others. Especially to my family. Because I do have a disability and I felt like I would be doing my sister a favor because I felt like I was always taking up the attention. I was tired of dealing with my family problems and just everything. For months I felt this way. It took time Jonathan, other staff here, Jess and myself to get me out of that.

So I know what it’s like. That when you’re in that dark place really nothing anyone can say will make a difference. Once you’re in that mindset of what you’re gonna do it’s almost peaceful. Though

I’m glad that she isn’t in pain anymore. I hope people don’t judge her for how she died. And I hope that this can help people understand the nightmare of depression, self harm, and other mental illness that robs you ofour will to live in the same way a physical illness kills a person.

I can’t imagine what her family and friends are feeling. But I’m thinking good thoughts and sending hugs.

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thank you and group link again

Hi everyone,

Want to thank all my readers who have shared my new FB group for those with mental illness A Circle of Support.

I’ve gotten some new followers right away just from posting this which is cool.

All my friends from other online venues have joined which is a great start. Would love to meet some new people especially other bloggers or twitter followers I don’t know very well.

Here’s the link.

https://m.facebook.com/groups/742149375916458?refid=27

After you send a join request one of the admins will write and ask a few questions about you and your situation to be sure the group is a good fit. You will then be accepted shortly.

Members can be 21 and older with any mental illness. If you have additional disabilities/ health issues you’re welcome to post about that as well.

It is important that members have or be in the process of getting in person support outside the group. Whether it’s professional/ friends/ family ETC.

I look forward to seeing how the group grows.

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Have created facebook group for mental health support!

Hi everyone,

I’m very excited about my latest project! I’ve decided to listen to the consensus that is that FB groups are the way to go when it comes to one of the most popular venues for online support. I was very resistant to creating one because I was unsure first of all about accessibility issues, the ability to be able to control running the group myself. I’ve heard from other blind people that it is possible to run a group on FB which I’m happy about. Controlling the group through e-mail I heard has ended since 2015 which makes me sad since e-mail is the way I primarily work. But to do this I guess I have to get out of my comfort zone.

I looked at the many mental health/ illness recovery groups out there with so many similar names. I wanted to have mine stand out. I’m hoping A circle of support will catch people’s attention and make them want to check it out instead of being one in a crowd of generic sounding mental illness groups.

I’m keeping the group small. Relatively sixty members or under. This way I can keep better track of how things are going as well as the group won’t get so big it’s unmanageable and people feel overwhelmed by the size. Or left out due to the shere number of folks there.

I’ve emphasized in my guidelines values of respecting each other’s differences, trigger warnings for tough topics, and the importance of reciprocal support and that admins will be monitoring members interactions for these things and gently remind them of the guidelines.

I’m hoping this is starting things off on the right foot to put a stop to any possible drama/ major conflicts. I know we’ll have bumps along the way. Not the least of which is me trying to figure out how to do this! But I’m very optimistic about making new friends, being able to share blogs/ videos/ other info, possibly doing google hangouts or skype chat ETC.

I want to thank all my friends from the two e-mail groups I run. You’ve given me valuable feedback about ideas for this group! My home will always be with you all on our e-mail groups.

Feel free to check out my group!

https://m.facebook.com/groups/742149375916458?refid=27

Comment here, or message me if you have questions. Or you can e-mail: nelsonsam68

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book review: Out of my Mind by Sharon Draper

Hi.

I just finished rereading Out of my Mind by Sharon Draper. This is an amazing young adult novel that anyone can relate to and I believe forever makes us consider the abilities of anyone regardless of external difference.

Melody is twelve years old. Ever since she can remember she has been able to observe and remember every conversation she’s ever heard. Words just stay in her head. She picks up everything from her parents conversations to facts off TV shows and this is just as a very young child.

Melody is trapped in her head with all this information however because she can’t talk. She also can’t write. Or walk or feed herself or take herself to the bathroom. She has cerebral Palsy (cp) in which she has very little muscle control. The only thing that seems to work really well in her body besides her genus mind is her thumbs. When she’s little all she can do even with those is hit the play button on the DVD player or change the channel. Or point to words and letters on her communication board of which make up a microscopic amount of what she really has to say.

Through her story we get a glimpse into the life of someone who has so much to say. Who gets treated like she’s of very little intelligence because of her condition. But who picks up every single thing around her. She has a big personality. She loves certain styles of clothes. She’s able to see colors and taste tastes when certain music is played. Her parents and little sister can communicate with her in their own way. But it’s still a huge struggle.

Mr.s V is her door to being able to express all this andexpand her sense of self. To be able to within the physical limets of CP, be the person she wants to be.

Even as a baby/ toddler Mrs. V makes melody work. She has her out on the floor on blankets and pillows. Gets her to crawl for toys and scoot around. Using her muscles to the best of her ability. She talks to her like the person she knows Melody is.

It’s clear to Mrs. V that Melody is extremely smart. She puts lots of words on her communication board to help her express herself more. When she is with Mrs. V melody can basically be a regular kid. She’s not boxed in by other’s thoughts about her disability. She is expected and able to participate in everyday life.

It’s a good thing she has this in her life because the rest of her days are made up of sitting in a special ed class. The class has kids with down’s syndrome and other cognitive issues. Some teachers are able to work with each child’s individual strengths. One has melody listen to books on tape and she actually is able to be productive that year. They get a different teacher each year. One didn’t seem to think any of the kids could do anything and tried to teach them the alphabet endlessly. Melody threw a tantrum and her mom told the teacher off in front of the class.

Fifth grade was better. The teacher actually believed the kids were capable of something. They hired an aid for melody named Catherine. She loves her. They have the same sense of humor and get along very well. At the same time the school starts an inclusion program. Where the special ed kids participate in regular classes. This doesn’t work out for a lot of the kids but Melody jumps at the opportunity. She loves the music class. And then when she goes to other classes like English and history the teachers start to realize how intelligent she is and what’s been stuck in her all this time.

She’s able to give answers using her communication board with its words and alphabet strip. She meets a girl Rose who she likes and who treats her nicely. Other girls in her class are very open about being nasty to her and saying that anything she gets right Catherine did.

One day a girl brings in her laptop. Melody tells Catherine she wants a computer for her. That would help her be able to talk. Why no one thought of this when Melody was oh a toddler is beyond me. But anyway her parents and Mrs. V researched the best computer. It had to be approved by her doctor/ insurance and it took forever.

When Melody got it she was beside herself with joy. She named it alvira after a person in her favorite song. It seemed to have unlimited areas for words and phraises. There were ways to type stuff in in the moment or have things to save. It was hard work just using her thumbs but she had great control of them unlike the rest of her body.

She could finally say what she wanted and needed to say. Within the limets of a talking computer. You can feel her struggle throughout the books as she gains more ability to express herself but keeps coming up against the limets of her CP.

In her history class she hears about a local quiz competition. For fun the teacher gives a little sample quiz. Melody gets every question right! Of course even the teacher doesn’t really acknowledge this as possible and says so in front of everyone. Other kids also are very nasty that she won.

Mrs. V tells Melody that she’ll help her prove them wrong! That Melody will get into the competition and go as far as possible.

So begins a crazy amount of studying. The quiz covers all areas possible. Everything from English to math to history ETC. I think these kids that do the show could probably go from fifth grade right to high school with all they had to learn.

But Melody’s incredibly mind took it all in. When it came for the test to get the members for the local competition she again got on the team! This time the teacher couldn’t deny her hard work. Some students like Rose were proud of her. Others were still nasty to her face or just barely hidden.

Still she continued to go on. She worked well with the team on giving answers. But wish she could participate in the fast paced conversation around her again feeling so different from others. When she is unable to have pizza with everyone (she would have to be fed) she feels even worse.

The team goes to the local competition. And in a tense quiz game win! They go out to a restaurant. Where Melody eats in front of everyone, well is fed and it seems sadly embarrassing for everyone.

Because the team won they are representing their district to go to Washington to compete with all the other teams in the country.

It is another whirlwind two weeks but soon she’s ready. Her family Mrs. V Catherine and most of all Melody can’t be more proud of herself.

At the airport everything crashes down. The team got there early. They went to breakfast and came back to find that the scheduled flight was canceled due to weather. They just managed to catch the last available flight. How the teacher could do this I don’t know and it doesn’t seem quite realistic. But he left her behind. He asked one of the student’s Rose to call Melody’s parents. But in a silent agreement with the other students she only pretended to call.

Melody was heartbroken and the family outraged.

The next day tragedy strikes when Penny Melody’s sister is hit by their mother’s car backing out of the driveway. Melody tried her hardest to stop her through kicking hitting and screaming, she didn’t have alvira with her due to weather. This slowed her down but didn’t stop things. Of course Melody blamed herself. Feeling like she was a burden enough to eople anyway it should have been her that this happened to.

Luckily Penny only has a broken leg. It could have been a lot worse.

After almost losing her sister standing up to the betrayal of the class is easier. But still hard. She’d typed up a response and told everyone off. Rose was the only one who seemed truly sorry. It was clear that despite her intelligence and genuinely ggood humored personality all these superficial kids saw was her disability and how they’d look next to her. I don’t know what the teacher was thinking. Like I said the one thing in the book that just doesn’t make sense.

They got a cheap 9th place trophy. Melody on purpose though people thought if was by accident, knocked the trophy off her tray and it smashed on the floor.

Then she turned and wheiled herself out of the room.

I loved this book. It shows that anyone regardless of disability can do things they never thought possible as long as they have inner resources and outer support. It also shows that people with disabilities like CP probably are very intelligent but just can’t express it. And to be careful about not judging people because you don’t know what’s going on in their head if they can’t tell you.

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