Book review: Lost for Words by Alice Kuipers

I recently finished reading a really good young adult novel called Lost for Words. It takes place in London. 15 year old Sophie has just recently lost her sister in a terrible accident. That’s all we know in the beginning. It’s fall, the accident happened a year ago, but Sophie is unable or unwilling to remember details. The book is a journal iven as a suggestion by a therapist that she’s been forced to see. She literally will sit through apointments not talking at all. She sees the therapist as pitying and she is unable to trust her to open up. But soon finds the journal a place to document events of her days and weeks.

Sophie is incredibly lonely and isolated. Her best friend Abi tries to talk with her as do others but she really keeps to herself. She meets a new friend Rose Leigh and they form a friendship. She is incredibly intuitive and understanding about what Sophie can and can’t handle in conversation and in different activities. She has a very rocky relationship with her mom who copes with her grief by hoarding lost objects. She writes poems which beautifully illustrate how she’s feeling. There is one poem that she continues to work on throught the book and that expresses her deep emotions around her sister’s death and her own grieving process.

Internally things become so intense with everything bottled up that Sophie has extreme panic attacks that seem to happen several times a day. These leave her breathless unable to talk and sick in the bathroom. As well as bring up flashbacks of the trauma both she and her sister went through.

It is through writing, and her friendship with Rose leigh, plus a growing conviction that she needs to get help or go crazy, that she gets a new therapist. The therapy sessions aren’t really described at all except to say that she is able to develop a good relationship with this therapist and learn how to work through her panic. The emphasis for her healing seems to be internal through the writing and reflecting on her life.

I highly recommend this book. It realistically portrays the devastation trauma can cause. As well as the after effects and shows that you can’t just “get over” what happened even if people around you expect that. Also that everyone handles it in different ways. It also destigmatizes panic attacks and hopefully will show readers that these are something many struggle with and there is hope. The different country setting, with its varied language and culture also was refreshing.

wonderful individual meeting with Stephanie!

Well had a great meeting with Stephanie again today! We met for almost an hour and mostly missed dinner but we ordered out so it was all ok.

Hoping to get a beanbag for our room so that when staff come in they can sit on it and not just the floor or stand or sit on my bed. Not that I mind have just always wanted a beanbag have to ask Mr. J if it’s allowed. You’d be surprised what’s not allowed in this place.

Anyway so we had an awesome meeting. Mostly she continued to get to know me. Asked what I liked and didn’t like about all my past PRSCS which of course was a talk your hear off invitation for me! Probably that took up most of the hour LOL! But she really really listened and asked questions about all the situations I brought up from the past about what was good and bad and stuff. She asked what my anxiety is like and what my tools are and things like that.

She set a goal that I’d use my cane three times a week as I never bring it anywhere due to the crowds, when I have it wanting to use it to hit people, and just ugh just ends up being in the way. If it were a smaller easier to get around place of course I’d use it. But I will try. She’s also gonna call the cat shelters for me. She had me show her how my computer worked which was cool.

I told her about how I’m helping Mr. J hire new PRSCS and we talked about her past jobs and stuff.

She’s gonna be another Edith I can tell! The only thing she wouldn’t do that other PRCS would, even though they technically don’t have to/ shouldn’t (some feel) is cut my nails. But she said she won’t cut anyone’s nails for fear of hurting them so yeah that made sense.

Anyway I’m beyond happy. So yay Stephanie!

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Happy anniversary to our room!

Hi everyone,

So woke up and realized today is the two year anniversary of Jess and I getting our double room. Remember that there are very few double rooms and are obviously nine times out of ten reserved for married couples. But since we argue like a married couple, LOL, they decided to give it to us! Not really!

They gave it to us because we were literally only compatible with each other as roomates. No other roommate situation really worked out for either of us. Secondly we were working so hard in treatment. It was a huge hurdle to have us in the same observation room in the first place as we both struggle with self harm. Having us be in a private room with no other roomates to supposedly keep an eye on us, stirred up a lot for the staff. But Jonathan’s solid think outside the box yet cover all the basis of any fears/ doubts/ whatever that came up won in the end.

This room is my home one hundred percent. I rarely leave it. I’ll never ever leave this room unless I move out and then Jess and I will just have another double room somewhere else! I just

Love love it! The only things that are missing are: a trampoleen, a net swing, two cats, a guiney pig, fridge, microwave, mountain of toys! So yay our room and yay us!!

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The tv show Switched at birth will never be completely disability centered until it has audio description

This is a very important subject I need to let my readers know about.

There is a teen drama on ABC family called Switched at Birth. It’s about two families who’s daughters were accidentally switched at birth. The catch is that one is deaf.

This show does a great job of exploring many issues that occur in the deaf community. And of presenting a character with a disability as an actual person nont a lesson in disability or something. A huge feature of the show is the use of deaf actors and ASL which is used as often or more than English.

The show also features other disabilities, for example Down’s syndrome. It would be nice just to round things out if they included a blind person but hey you can’t get everything in life LOL!

One thing I feel us blind viewers have a right to, and will eventually get, is audio description for this show. For those who don’t know audio description is an audio track that runs alongside the audio of the show. It comments on all visual aspects of the show such as setting, character appearance, facial expressions ETC. In the case of this show it’s even more needed as much of the communication is in ASL so many silent conversations going on. The audio describer would not only read the subtitles but comment on the facial expression and actions of the characters as they’re communicating.

Though similar to closed captioning for some reason, audio description is far less available or has been. Many advocacy groups have pushed for it’s inclusion and there have been great steps including several laws mandating that a certain percent of shows on a tv network have AD, as well as movie theaters, and now internet streaming platforms.

The accessibile digital media project has taken great strides to get audio description included in most netflicks content. This is all great news.

One would think this show of all shows out there, being focused on disability, having something so visual in it’s content ETC, would automatically have gotten AD without much thought. Unfortunately this is not the case. Below is a blog post that is on the accessibile digital media project’s blog which I wrote and has been shared with several different people though not enough.

https://netflixproject.wordpress.com/2016/06/14/why-we-want-audio-description-on-switched-at-birth/

Please share both these posts with as many as possible.

On the audio description side many audio describers have been contacted. The results on this end have been extremely positive, with theseprofessionals coming to the same conclussions we have, why wasn’t this done from the start? And saying that in the skeme of things it wouldn’t be very expensive or hard to do.

The big problem we’re having is who would give license for the show to be described. As the show is ending this coming year, and it’s very hard to get shows in AD once they’re off the air, it’s unlikely this will happen through the network itself. Efforts to connect with people at the network and really have a dialogue have not gone well. The producer seems to not want to do much about this.

However there are other avenues. Netlficks has the series as part of it’s content. And it’s gotten the most pushing to make it’s content accessible. However contacting anyone at netflicks has lead nowhere with literally no response. Our only other option at this time is apple TV which also has a lot of audio described content. But again we’re unable to locate a contact person to discuss this further.

I believe this will happen. It will just take awhile and a lot of advocacy which we can’t do alone. If you’re interested in helping doing one of the following would be much appreciated: Share this post, or the linked blog post with as many as possible! If you’re a part of a magazine, newspaper, or other media that supports those with disabilities consider doing an interview with us. The blog post linked has contact info for the people at netflicks. It would be worth a huge try contacting them. Mostly we just need more people on board to get this going.

There was a show called daredevil about some blind guy. Just didn’t sound like something I could stand two minutes of watching. But anyway, there was this huge outrage that the show was about a blind person and wasn’t audio described. Though this issue isn’t as clear cut, (and some want to debate over the wisdom of ASL being spoken) it’s very similar. We need to get that kind of momentum going and the only way to do so is to work together discussing options and next steps, and politely but firmly insisting on equal access to a show that’s been called one of the most disability centered pieces of media currently. However as the subject states it will never be fully disability centered until the blind have access to it.

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Please help get the TV show strong medicine uploaded to youtube!

So one of my favorite shows is called strong medicine. It has six seasons and ran on lifetime TV for several years. I have season one on DVD but for some stupid reason none of the other seasons are on DVD.

Below is a summary of the show

Tough female doctors treat an exclusively female clientele at the Rittenhouse Women’s clinic, tackling female-centric issues and trying to make the world a better place in a male-dominated society.

Dr. Luisa Delgado ran the South Philly Women’s Clinic so that poor women could get the medical help they needed. Dr. Dana Stowe did medical research on cancer to help women. Together they now run a women’s clinic at Philadelphia’s Rittenhouse Hospital to help all women

At one point someone had uploaded all the episodes but then the copyright hounds found out! I’m sure there’s a way to get around this somehow. There is one full episode on youtube at the moment.

https://www.youtube.com/watch?v=Iq3BX7PNmZ8

This is part one. Just click on this and watch it firstly, to see what a great show it is! Then go on to this person’s channel and write a public comment asking to upload. Or do a private message. I did last week but got no answer at all. If people are really interested we can make an FB group for the show, upload to an unlisted account and get the episodes that way. That’s what happened with another show of mine and it worked out well. If anyone has any other ideas please let me know and share this post!

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Awesome first individual meeting with Stephanie

So I’m really happy to report that I had an amazing first meeting with Stephanie yesterday. She’s very energetic passionate and just a great person to talk to!

Before this she did ABA with autistic children, as did one of the other new PRSCS Anna. From searching through resumes I’m finding special ed is a common past field for people applying here as are developmental disability and youth services.

Anyway. We just had an amazing talk. She already has read my records since the meeting with Jonathan. Absolutely loves Jonathan! Says she really agress with his clinical philosophy on everything especially what we went over with self-injury. She says she loved the two hour training she and the other new PRCS got a couple days ago. She didn’t think it would be two hours of course and Mr. J probably didn’t either LOL! I told her his favorite hiding places the garage and park. She says she wants to keep “picking his brain”

I talked about my family history, how I got to Chicago how I got from FP to here and basically my whole life as I do ramble on and on. But she kept up with everythingwhich is always impressive. She concluded it sounded like I’ve been judged a lot in my life and that I’ve really done well for myself. We had a nice discussion about how disjointed different services are in mental health care/ humans services so you don’t ever have one provider who has a whole picture of the person. We also talked about how disability is so misunderstood and just so often ignored.

So we’re gonna basically keep going where Edith left off which I never thought was possible. She’s gonna bug me to take me for walks. I’m going to have her call cat shelters for me and make the strong case of how saying I can’t go because I’m blind is really messed up. We’ll deal with other things as they come up. I would like to work on this visit home because my family continues to stall endlessly. And yeah! We’ll just see what happens. I’m very impressed and can actually say Monica made a good choice. Will keep you posted.

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very positive meeting with my new Caseworker Stephanie

Hi everyone,

Just a quick update. Had an awesome meeting yesterday with Jonathan and Stephanie. Mr. J was his extremely talkative self so of course we met for like an hour and a half. In his classic round about way he gave Stephanie all the information she needs to know about my self-injury history my yrust issues and triggers in relationships while giving me plenty of room to put in my thoughts. She was very agreeable to everything and just seems very upbeat.

We’re meeting tomorrow night. We set that time as she was taking me backupstairs and at one point thought we might do today. She hadn’t written it down so thought she had missed our appointment this morning. She came down all apologetic and wanting to check in. I’m like wow she’s good!

She’s funny too while Mr. J was on the phone she was saying how Jonathan reminded her of batman LOL! I have no idea why but she seemed slightly disappointed I don’t like super heros! I wonder if she’ll make fun of my “depressing books” I.E cathy glass ETC like Edith did. I bet I could get her to work with me on ASL she eagerly told me Kat was already teaching her some. So I’m very hopeful and comfortable going into our first meeting. ,

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waiting monday

Hi everyone,

Have had an ok day. Was stressed in the morning sending off an e-mail to Jonathan with all the information for the applicants from this weekend attached correctly, wanting to make sure everything was there. I’m getting antsy as clearly we have a good set of applicants but Jonathan as his busy self hasn’t had time to sit down and write them, or if he has written some which he says he has, he hasn’t been able to check e-mail to see if they’ve responded. Nor to set up or do any interviews. Yet I know how desperately he needs these positions filled and that’s a lot of why he’s busy. I don’t know how long people usually wait to be called to an interview after applying before moving on to something else. I also know that people usually apply for a few jobs at once. I’m afraid the longer we wait even though it’s only been a few weeks of this, the harder it will be to get the really good people we’ve picked out.

Similarly I was supposed to meet with Stephanie my new caseworker today with Jonathan. As a way to smooth out the transition and be sure she has his input on my treatment issues and overall personality. I am veery reluctant to have a meeting with her before this point. But I haven’t been able to get ahold of Jonathan and not sure she’s around today.

So I guess it’s been a day of waiting around impatiently. I have been reading a blog about the show in treatment that I’ve been re-watching lately. Below is the link.

http://www.jung-at-heart.com/jung_at_heart/in-treatment-season-3/

That’s really all for today.

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catching up on this week

Hi everyone,

So a quick post. Not sure if I wrote since the weekend/ Monday. This week has been good.

We got our haircuts on Tuesday I think it was. I’m so happy I don’t look like an izzitt anymore yayAnd I have to say Betty and Nicks is awesome thanks Mr. J for recommending!

Other than that had the best time sorting through resumes. Did some networking and guess what? Found two music therapists who aare applying. I’m totally off the wall happy! This is so rare in this state anyway. If I were putting out a job and saying expressive arts therapy training is a plus in MA I’d get ten million aps mostly from my own school! In IL and I’ve heard, bordering states no such luck. A lot of art therapists if anyone, but not a whole lot of music therapists doing psych work you have to dig to find them. And I certainly have tried as I did find Gina the dance therapist b ut it’s a challenge. However I told one music therapist who put the posting on the music therapy listserve, and that’s where I got my two people! Hoping to reach out to related arts therapy people and have the same done.

But OMG these job websites really know how to make money! I know indeed is free. But some of these others like one it was over a hundred dollars to have your job up for a year it’s like really? I guess they think these employers have a lot of money to invest.

But yeah that’s my big project until further notice and I love every moment of reading sorting and just the whole thing!

I got to see Mr. J’s family today they came for a visit. And I got to talk with Mr. J for a few minutes as well. I haven’t as of yet had my official sit down with Stephanie the new PRC. I really want Mr. J to be there and he does too. With how I take change, and Stephanie as an outgoing probably speaks her mind kinda personality. She could say something that I’ll take wrong as I’m really anxious about opening up to her, even saying how hard it is to open up is opening up. So yeah I’m glad I have his support for this meeting. It more than makes up for him skipping out on Edith’s last day.

So over all a good week.

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My big sister is blasting through school!

I’m soo proud of my big sis. She’s like over halfway through her two courses. She’s really doing amazing. I don’t know how she deals with the craziness around here, her emotional and physical health ups and downs and tackles schoolwork. But she’s like amazing! She’s doing well on tests and papers. I love hearing about her good grades and supporting her all I can by making sure she gets to and from school safely on the van. I wasn’t sure with everything going on internally how this would be. I knew it would be really stressful. I’m so impressed that even in the hospital for scary medical issues she got work done! She was thinking of dropping a class that she’d got halfway through which would have been ok with me if she needed to. But she kept going and is doing really well. When she’s done no matter what grades she’s getting I’m gonna get her a special present or meal or something. Shhh don’t tell her!

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