Book review: Nowhere to go by Casey Watson

I just finished reading Nowhere to go one of Casey’s fostering memoirs. I so love these books as you’re drawn into the emotional life of Casey and her family and how each child affects them all. It’s extremely emotionally honest and raw. There’s no fiction or making it look pritty it is how it is.
She wrote this book a few years ago. And it’s the first one she got on audio. At first I disliked the narrator’s higher slow reading voice just tone and energy. But as I listened more I could picture the voice representing Casey as I knew her from reading other books. Then it became more real to me and it actuallyturned out that I felt the narrator portrayed all characters well. Especially when people got emotional.
This story centers around 11 year old Tyler. He is an emergency placement. Picked up by the polece after stabing his stepmom with a knife. He is volatile verbally abusive, and really out of control. However Casey and Mike were hand picked for the challenge. They are specialist foster carers. They run a behavior management program where a child gets points for behaving well and loses points for not making good choices. Through this program it is hoped that the child understands cause and effect and the link between their behavior and what their daily life ends up looking like as a result of their choices. The children that the watsons get come from extremely abusive backgrounds, and have behavioral problems mostly a lot of anger issues, sexual acting out, or simply lack basic life skills. They’ve been at this for a few years and after a long break seeing Emma off (a last kiss for Mummy) they were more than ready they thought. They didn’t realize how intense and volatile the family situation was. Or the nature of Tyler’s crime needing a court case. Casey was very shocked that a family member would press charges on an 11 year old child. A chance meeting with the stepmom showed casey exactly what the problems were. Far from Tyler provoking things to go bad in the home the stepmom who I suspect has mental illness, held an emotionally abusive rein over the whole family including Tyler’s little brother.
While tyler was trying to come to grips with the programs obstacles like being banned from contact with his brother, memories of the rejection he dealt with over the years all piled on him.
It was traumatic that his mom died of an overdose when he was a baby. And he was placed with his bio father. But then to be emotionally and sometimes physically abused for years wore him down to the bone. With Casey’s whole family ( grown up children, grandkids and Casey’s parent’s) insisting on breaking down his deffensive walls he slowly started to become more polite, more able to talk about his feelings and be vulnerable. The funny affectionate kid under all the layers of hurt was shining through.
There were to be more traumas in his life while at the watsons. But thelove therebrings him to a place where he’s able to resolve deep rooted issues about his past and bio family in order to make room for new experiences and clear up old emotions.
As it gets closer for him to graduate the program and a long term carer is being found Casey is unexpectedly off emotionally. She doesn’t know why though the intuitions of her family tell her that she truly wants Tyler as part of the family. They’ve basically give him a real childood and a family when he never had one. She told herself that their job was to be short term usually for no more than a year for each cchild. But was there a way to change this, to allow them to continue to foster s special kids while being a long term carer? I won’t give away the ending but it’s a good one!
This story reminds me of Lucy’s story in Cathy’s family. It’s interesting because as the books came out intime order we didn’t know tyler was part of the family until he was. Oh gave it away sorry! I wanted to read this book before I read any other fostering memoirs taking place after it as I wanted to know the whole story on tyler as I’m sure he’s going to be a real support to incoming kids. Als am curious how life changes for the family with fostering new kids with tyler a there forever.
I highly recommend this book! And the audio verssion. I’ve been feercely bugging Casey about geting the books written before this point into audio. Cathy glass under the same publishing company got all her books out in a year. So I don’t quite understand the hold up. Enjoy this book

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Thursday: school trip, cats and no more spots

Hi everyone,
Today was pritty good. Still no Jonathan. Which is the most
frustrating thing of all. Just sitting and waiting and knowing it’s like 99.9 percent likely that he hasn’t done anything with calling about the computer being sent to square trade even with the contact info. Mom said she’d try to help if he keeps not doing anything as she knows it’s because he’s so busy.
The thing with him which I’ve said many times is he gives a hundred percent maybe more, to whatever he’s doing. That’s how I’ve had such in depth therapy even though he can’t do that with really anyone else he made the time. He’s made the time to drive a resident like two hours to go visit family or take a resident out to dinner on his own birthday. Don’t ask how that got started! Or to fix a variety of tech items mostly computers. Or I’m sure to do similar things with staff. The problem is when he’s really into doing one of these things everything, and I mean everything else goes to the background. Including sadly staff. There will be times when no one knows where he is. Though I asume tossi does. So that’s the thing he’s like single mindedly comitted on individual stuff. If there’s a difficult side to him that’s it.
Anyway. At least I didn’t have time to just sit around wishing for a better computer. Because I had nap lunch and then we went to Jess’s school. It was cool and rainey out. Finally feeling like fall. Which is great as it will be October in a day.
Jess got a hundred percent on her math test! I’m extremely jealous. I never did that well and math though I never cared to do that well. I just wanted to pass.
I hung out and read a book which I’ll probably review soon. Was really into it.
We got home. And had to make the always difficult choice around whether to order out or not. I technically have money saved. But I want to save it. Mainly to get a new battery for the toshiba. So if Jonathan can’t get to the whole take it apart and replace parts thing if we can charge it up and use it for like six hours at a time that would be lovely. Robbie found this amazing deal on amazon and got me the battery for like less than $10. Unfortunately he can’t find the order. And I’m not on either computer with outlook where I can just search through and find it.
But I’m sure we’ll get there.
So we had dinner. Which was pineapple chocolate ice cream and jello for me. I’m really surprised I’m not skinny as my cat Lucky used to be.
On to cats. As you know we have Simon and Lucky. Mom took Simon in for stuff. He’s old, we found out through mom pulling up the records that he’s like 16 or 17. We got him in 199 for my sister. He’s had many lives. Between uti infections and stomach issues there were a few times when we thought he was at the end. But he always perked up. I have a friend who’s a psychic intuitive whatever you call it. Anyway she communicates with animals. She said he’ll know when it’s time. So my mom found out he has kidney disease. This was very shocking and sad. I guess he’s on special food. And mom doesn’t want to do anything to “torture him” like anything that’s g gonna really irritate him at his age.
Simon is not my favorite cat. But he’s been in my life forever. And a huge emotional issue for me is anxiety and depression around never seeing the pets, any of them before they pass away. I think I had this anxiety even before I left friedman. With visiting home such a all over the map issue it’s a rational thing. I wish my parents would take videos or even pictures. But they say they don’t have the time. Lucky came to us in 2002. He’s 11 so still has a lot of life. I have a feeling he’ll grow old and still keep fighting. My mom’s gonna have quite an adventure luring him into the carrier without being scratched to death. I’m the only one who he lets carry him all kinds of weird ways like paws hanging all over the place practically upside down hanging over my arms. My mom can’t even brush him. He still sleeps in my bed well my dad’s bed now. But yeah. So he’s going in for a rabi’s shot. I guess it’s against the law not to have your pet get it even if they’re indoor. So they’re gonna do that. And he has this weird bump thing on his head. We thought it was from a rough playtime with Simon but Simon doesn’t run around like he used to. I guess he doesn’t even really go up and down the stairs anymore really sad.
Hoping it’s nothing. They’ve left it there long enough always saying they’ll take him in but then not. To be fair my mom takes excillent care of the animals. Though they’ve born the brunt of my mom’s modds just as everyone else in the house. Animal intuitive said why Simon pees everywhere could be emotional stress. Or kidney disease LOL! But I think she’s right in part.
I suggested she lure him into the carrier with food. He loves bacon. Everytime I eat bacon I think of him. So she said she would. She still says she’s need to wear armor they’ll have to restrain him in a wowel to avoid most of the scratches. I do wish I could be there because it’s my baby but yeah.
So that’s the pet adventures.
Extremely sad about Simon and wonder about Lucky’s head thing. Other than that I’m doing ok I guess.
Hoping tomorrow I will make some kind of contact with Jonathan. Oh and this morning the nurse had that zerteck pill from BK Sha of course. Which I declined. Not I’ll have to refuse that everyday til he takes it off my chart. Sigh.
I’m really hoping my spots don’t come back. At least I sort of know what they are, especially not bed bugs! So it’s less anxiety. Book review on the way!

update: medical dR aetna insurance closing

Well today was somewhat better than yesterday. My spots are going away and no new ones though the one on my right wrist, that Karen says is different from the others was itchy and iritated but I think it’s because it’s new. I’m very happy about this.
I did go down to see BK Sha today. He’s the same very dense weird doctor I’ve always had. Who insisted I could be pregnant when my period took a little vacation when there’s absolutely no way I could be. Unless I had one of those miracle babies or something. Or like you take psych meds and magically grow a baby as a side-effect!
Anyway this time he basically acted as useless as anyone just throwing out wild guesses about what could be going on. Got the same round of questions about alergies, did I use different soap (at least he didn’t ask if I took a bath at all!) were there bugs. And all that.
He threw out every suggestion from putting me on an antibiotic, to taking an alergy pill, to buying some over the counter lotion. It was so frustrating too as not only is he just really clueless but I have trouble understanding his accent. So Karen was my advocate and repeater of much of what he said. He ended saying to just keep using the hydrocortozone and maybe take zerteck an alergy pill. Which I do not need! Karen whispered that if I didn’t want it I didn’t have to. Good thing because I would have reffused.
It was frustrating but what did I expect? I really wish we could get better dr.s in here especially female. Or just ya know good anyone. I guess BK is like the best they have. I’ve heard others are much worse. But I’m just happy they’re going away.
Found out from talking with Robbie that Aetna insurance is like closing down in IL next year! That was another stress I don’t need but I’m glad I found out because likely no one would have said anything until like it was happening. So of course I called Bobbie the appointments lady. I told her what I knew. She was like OK? like she had no idea. I was like have you heard of this? She’s like yeah I’ve heard of some plans that will no longer be with us. She made it sound like people. Which is kinda true like I’m really concerned Dr. Anderson the good dentist won’t be on these other plans.
She said Jeje in administration and Mr. Tossi the big boss are working out. I told her I’d be bugging people. Because I want to find the best plan posible. Will also call the medicaid case worker we have. So yeah. At least I have time to figure this all out. I knowall of the plans that we use will cover all of the doctors that come here. Just worried about that dentist. Now that I actually have fillings I feel I need to have them looked at twice a year. Because they did put this stuff in my mouth and I have no idea ya know signs of something wrong or if it needs to be like repaired every so often or what. And I sure don’t want any new cavities. I really liked Dr. Anderson. One reason being my mom and her both speak spanish so my mom can like advocate for me. Like we thought they were gonna have to numb me for the cavity so my mom got her to explain it to her and she told me about it. Thankfully that didn’t happen.
Medicaid has this reallyoff the wall idea that dental apointments aren’t medically necessary. So we’re lucky I did get to see her twice a year. I tthink with the new managed care plans they are making that more of a priority. Or were I thought I saw it written somewhere. Anyway that’s about all. Tomorrow will be taking Jess for a math test. She’s doing amazingly awesome! I give her so much credit especially with stupid math. Like stuff you never need to know in your life. So yeah. This computer is killing me. Can’t even really do my volunteer work on it. Really hoping to connect with Jonathan on friday.

yesterday’s update: computer, skin spots, and Robbie

I tried to write a whole post last night and was tryingf to send when the internet on this computer decided to stop working. I’m on this old IBM computer from when I was in college my last year and my HP decided to just crash. My dad’s school where he’s the facilities manager like gets rid of their laptops every year. It was when everyone was changing to windows seven so I guess since they’re rich they figured they’d just buy all new computers rather than update like normal people. So this computer has xp and jaws on it. It’s a pritty solid computer though. I’ve had no problems with it except it’s very slow. It can’t handle things like going on amazon.com, and there isn’t space to put stuff like aaudio books on it but I’m making it work. So to cover yesterday. Couldn’t find Mr. J. He was in his office after lunch with the big boss of the place so even staff doesn’t really want to bother them when that’s going on. Jess and I were waiting and Stephanie hapened by. She diid apologize for missing friday’s meeting. She said “it got crazy” I wish she would have e-mailed like sooner or had someone tell me this was going on. Those are Edith type things and I know I need to keep reminding myself she’s not Edith. And other PRSCS might not have even cared at all. She seemed a bit more connected than last time I guess. Trying to give her credit for something. She did actually try to have the wrantie people do their call back thing after the stuff was submited as it said to. I thought she hadn’t bothered. But she did and they never did call back. But she didn’t madly pursue it or give them her work cell. Which Edith or Nakia would have done but at least she tried. She did seem sorry that she couldn’t do it, she especially said Jonathan wished she had been able to. I can only imagine about that. Last night mom did send me the phone number of someone from the place square trade that they can call. Don’t ask me how she got ahold of anyone as Stephanie claimed there’s no way to call costumer service but whatever. Hopefully this will help if I can ever get back online to send the number to Jonathan.
He still has the braillenote and battery that the electrician hopefully is working on. I’m not so worried about that as I’m using the braille sense ok. Other than having to reset the thing to get it to turn on which I still am not sure is best for the computer or whatever works the thing. I’m more concerned right now about geting a working computer. The toshiba technically can operate but it’s the thing with the cord being so bad in that power port because the pin has gotten all out of line because of the piece of plastic breaking. Plus it needs a new battery. Robbie got me one for very cheap on amazon and I tried to go online and look and that’s when I found out this old thing couldn’t handle that site.
In other news my spots are doing ok. Nurse said that all Dr. BK sha would say is to use the hydrocortozone and wait to see what happened. Last night we were planning on going to see Karen the director of nursing. But today they seem better though as of this writing just discovered a new itchy spot on my right arm. They literally come out of nowhere like that. I’m tired of geting asked the same questions: do I take a bath with soap and water? LOL this is actually a fair question as so many here sadly don’t. And probably have skin issues among other things as a result. They ask if I have any alergies which I don’t. I kind of think it’s stress related. Or could be part of my egxyma just like a new form of it. Though my mom who’s had it all her life, and I’ve had it all mine so she’s seen my skin, said it didn’t look like it. But you never know. Like I pointed out I never had twitching shoulders until one random day it just happened. And now it’s part of my anxiety issue. So yeah. Mary the CNA who put our bug worries to rest pointed out too you can get a reaction to something randomly any time in your life so that could be it. So yeah I’m a bit less worried though we still might stop by Karen as Jess has to talk with them anyway about something.
Lastly Robbie is doing ok. Sadly the really good CNA, the one who makes Dr. apointments suddenly died this weekend. So yeah it’s pritty bad for many reasons one being he was like soo good with geting stuff like Dr. apointments and things made and really advocating. I’m hoping this doesn’t put off his surgery or screw it up. But we’ll see. Well that’s all for now. Hoping as I typed this up in notepad once the net decides to connect I can send it easily.

may be off and on major issues

Hi everyone,

So super quick. May not be on the computer mostly e-mail for awhile. My Toshiba has to have the cord held in place to stay pluged in now which Jess very nicely is doing!

It came to this last time this issue happened I was very upset when it became clear a few weeks back it was getting this bad and he was like it’ll be fine we’ll have the HP fixed soon. Well the HP still hasn’t been sent out due totm beig slow t get this warantie submitted and then like not callng anne to talk with them about it. I know Jonathan is doing huge over the top favors with helping me with this stuff which is why I can’t get mad at him but the stress is killing me.

So basically as this one is becoming worse and worse all I have left is a very old IBM computer. I can go on facebook easily enough but can’t seem to have any desktop e-mail program working right now. Stuff was I thought but haven’t used it in awhile. So yeah will have to access gmail site or something.

It could be stress related or a random reaction but I have random itchy spots all over my body like bug bites but there are no bugs at all. I have exygma but these aren’t consistent with that appearance. So I’m freaking out because I do with anything medical. Sent her pictures of them, taken at wal mart LOL and new she’d know cause she knows my skin. She said she’d never seen anything like it on me./ So yeah just started up a couple days ago and mostly today. So she called the Dr. and put hydrocortozone on it for now.

So yeah don’ know what to tell ya except I’m really freaking out with everything. Not having a PRSC I feel comfortable talking to is rough. Stephanie didn’t even show up Friday for our meeting. At first I was extremely happy not to get another uselsss you need to use the cane lecture. But I suppose she should have shown up and I should be able to tell her any of the things on my mind but she didn’t and I wouldn’t have and so yeah.

Will let you know how things go. Hopefully get an e-mail program set up on the old computer. Took me an hour to post that book review last night from the site itself.

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Book Review: Will Mummy be coming back for me? Shane Dunphy

Hi everyone as a side note this is written on my very old computer using the website not the usual e-mail to post so if there are typing mistakes that’s why
I just finished reading another amazing memoir by childcare worker Shane Dunphy. He works in the social care system in Ireland. He’s done work over the years as a child social worker, teacher in special needs school and sheltered workshop, residential worker and journalist. I highly recommend his books to be used as required reading for any class to do with psychology, social work, ethics ETC. The books provide detailed and compelling cases of children in all kinds of crisis and their families. Shane’s interactions are show in depth not only how he works with the clients but his own inner thoughts and feelings. There’s a lot of internal process around personal involvement self-care and boundaries in the therapy relationship
In this particular book Shane comes face to face with the child he worked with at his first job as a residential key worker. He was just out of college and felt very optomistic about the job. He would be working with five year old Jason. Who had been through many placements before arriving at this residential home. He was physically agressive didn’t speak, wasn’t reliably toilet trained and placements previously had not worked out for these reasons. It was known he’d suffered horible abuse but the details were not known.
Shane was to be Jason’s key worker, that is take on a primary caregiving role with him in the home and advocating outside of it. Through a mix of straightforward gentle compassion, creativity and patience Shane begins to chip away at the behavioral walls that protect Jason from the outside world. The clear details of this unique relationship are heartwarming to see.
While this story of his first job and relationship with such a tough kid is being told, alongside it is his interactions with Jason in the present. Jason has g gone through every program imagined until he’s ended up in juvinele detention for sexual and physical asault. He begs Shane to help. Shane wrestles with the history of their relationship while he tries to salvage some hope for himself and Jason that he could get his life back on track. In the process many coleagues question the wisdom of his involvement in the case. They’re worried about him emotionally and how this is impacting him. As the two stories merge we see the events that put an abrupt ending to such a special relationship both in the past and terribly in the present. This pushes Shane even further into a personal emotional territory of his own guilt though the circumstances are clearly not his fault.
This book doesn’t have a happy ending. Shane’s books are real life stories and so are not crafted with a view for a certain outcome just telling the facts as well as posible. This work is extremely painful often more than it is rewarding. I felt the ending was appropriate and probably reflects so many people’s journey in the care system whether foster parent social worker ETC. You want to think that patience and love can be eenough to turn around such a damaged little person. But so often physical brain damage from trauma family crisis and other circumstances get in the way. The lesson for Shane is in needing to face whatever it is that emotionally pulls him to a place of geting so personally involved in these cases and feeling drained and helpless by the end. These are hard truths many in the field will relate to and so rich for posible discussion and personal reflection. I hope that shane one day goes to a compitent therapist to sort out these issues and if he continues his work to be more self-aware in the future. I believe that I’ve read all his books to date. I look forward to reading new ones.

Initial call to Gateway supportive living was amazing!

Hi everyone,

So the big event of the day. Jess and I came up with the most comprehensive list of questions possible about what we wanted to know. Kim the head person and we talked for an hour! She happily answered every single question in an energetic and genuine way.

Basically it’s like Friedman Place but brand new. Will open next month. So the building is new they’re hiring all these new staff and are in the up beat we’re starting out stage!

They have 105 apartments. Some are single rooms and some are double. If Jess and I go we’d get a double.

They have three meals in the dining room but you can have food in your little kitchen and I imagine a microwave as we had one at FP.

They have the dining room lots of activity rooms downstairs an outdoor patio and everything.

She said since it’s new that residents would have a huge part in planning all the different activities and things. They will have an exercise room and I advocated for a trampoleen with handles on it for safety she said she’d look into it but kinda laughed too.

You can’t have a cat or dog. Though she said therapy dogs would be brought in, she has a puppy that she hopes to train as a therapy dog. She was like yeah ok, I guess cats need some love too even though my daughter’s cat is an evil kitty! She did say a small pet in a cage could be acceptable with discussion. Jess wants a ferrit of course!

The disabilities so far that she mentioned were things like blindness, deaf, stroke, brain injury, CP, autism heart disease ETC.

On the mental illness she said that on paper the primary diagnosis had to be your physical disability and your psych issues need to be managed outside the facility. But that they would refer you to places and keep tabs on it as much as they can. I’m sure should we go forward Jonathan will be contacting them and talking to them about my issues. I particularly want to know how much is “being in and out of the hospital” like if I or Jess did get hospitalized could we still live there? So much to talk about there and so hard as it brings back memories of FP and having to hide my illness and having staff not get it and not being open with other residents and just yeah. But she studied sociology and seemed to understand about things. If we went, and even if we don’t, I’d suggest that groups be started at least one for residents that do have mental health issues so we can at least feel like we’re not alone living there with this problem. It does sound like within the limits of the facility they’ll do what they can.

What else? Weekly housekeeping, help with daily living activities like bathing laundry ETC. But everything is individualized and they’re very much about empowering people to do what they can and expand that as well as be there to assist.

One last amazing thing: We were talking about down the road going for a tour. I guess Peoria is like two hours away. She said she’d be willing to drive us the trip up and back I was like OMG!

It made me excited. It feels like a place where I can have more independence than I have here, a nicer cleaner building with residents who don’t have quite so huge behavioral problems. To have more money out of my check a month would be awesome! And just new oppurtunities I wouldn’t get being here meeting new people and all.

But I’m still remembering how bad I got and don’t want to go back there again. I feel emotionally so safe at Albany. Even though I hardly reach out to the caseworkers I’m really really glad they’re there and I feel safe knowing they are there. Knowing that they know how to coordinate apointments even if they mess it up LOL, get your doctor on the phone quickly and just know the ins and outs of mental illness. Staff not having that knowledge scares me. So it’s a lot to process. And we wouldn’t be doing anything til a year from now at least. Jess needs to finish up her schooling, and I think we both need to continue to get as stable as possible. Though there’s a real unknown about mental illness. It’s like with any physical illness. One of my good friends has diabetes and she does everything right and it’s just killing her. It’s one huge illness after the other and she’s doing all she can. I’m just worried that it could get to the point that I need the stability and knowledge that only a place like Albany can offer. This place saved my life. Jonathan has guided me through everything and I know he’ll be there every step of the way to guide Jess and I. But it’s still extremely terrifying to consider leaving even if it’s to an assistive living place.

If people want more information about gateway please let me know. Ya know I’ll just leave the phone number

309-673-3115

Also because the place is brand new they need suggestions for activities/ support groups and other things at the facility to engage in. So if you were theoretically gonna live at a place like this what activitys/ groups would you want to have them have?

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Robbie doing well geting more support than you’d think finding the good in the bad

Robbie is in an interesting place right now. And I think it sends a message about trying to find the good in hard situations and making the most of it.

And please know I’m not saying this from an super unrealistic overly positive mindset. Because what I wrote sounded like something irritating someone would say to a depressed person to try and make them have a new perspective. I’m not saying that.

I’m saying that when all this hit we both felt extremely devastated and angry. That the so called professionals neglected his healthcare to the point that these illnesses, that could have easily been prevented or have been much more mild, grew to such an extent that he’ll never see again. I guess it would be different if he were on his own trying to manage things and they got out of hand and he didn’t know the signs to look for ETC. But he wasn’t he was under the care of nursing staff, supposedly seeing a medical doctor at least once a month hospitalizations supposedly followed up on in theory ETC. That none of this happened is inexcuseable.

So when I found out about his ucomming surgery I was very anxious for him being in an environment where I doubted people would care one bit, I mean they didn’t call the ambulance for goodness sake! I wanted to like sneak him into my closet at alban and have nurses secretly look after him. I wanted to move him out as soon as possible.

We were talking last night in e-mail about all this. And he says I don’t mean to sound like I’m saying shove off, but I do have lots of support here! I was a hundred ten million percent thrilled to hear this. When he told me about residents offering to get things at the store for him, doing mobility lessons, helping him with braille it made me feel all warm and fuzzy inside. When I heard about the good CNAS behind the scenes working around the stupid director’s crazy system that demands he handle doing his laundry when this is imposible due to CP I was thrilled. The former director of nursing is truly loving and will do the best for him. I believe should he choose to he can make it work there. And that of course the surgery and recovery will be a long while. And long term I feel comfortable with him there assuming he has the same level of support from the residents and the few good staff they have left.

It made me sad though as though I had an awesome time at FP and was envolved in everything under the sun, there was a part of me the mental illness part that never felt at home there. I couldn’t even try to open up because I got the reactions of I can’t believe you’re depressed or anxious or you really need medication? I kept so much to myself and could stay on top of it for awhile but it just became too much. It really made me wish that I didn’t have mental illness because if I didn’t I think I would have had a more secure place within the resident community without this baggage I had to hide.

But about seeing the good in the bad. It’s a process. We didn’t go looking for the good or having someone [ put us down for being infuriated and deeply betrayed. The good just happened in the form of residents giving mobility advice, braille advice chocolate a hug randomly ETC. And that director of nursing who let him cry in her office and said how sorry she was. And of course the bad, the people who did this to him are still there and still a huge issue. But being able to cling to the good offsets that though not as much as it should. He’s in a good middle ground place right now, he’s getting as much support within the facility as possible at this point. He’s extremely intelligent in advocating for him self and plans to work around any stupid demands the staff throw at him in favor of the appearance everything is about money model that’s so strongly being upheld. Putting that under fire will have to come later but for now I’m just happy he’s in a solid safe place. And I never thought there would be such thing as a safe place in that situation but he found it.

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good day looking into other supportive living options

Hi everyone,

So today was good. Was in a good mood. Hung out chillaxing all day.

Jess and I have two supportive living facilities, in the same category as Friedman, that we could possibly move to.

Because I suck at spelling am gonna pause a moment to bring up the sites of these places. I can spell them just not the towns they’re in LOL

Ok I’m back

The first most promising place is called gateway at river city. No it’s not in river city! It’s in Peoria IL about two hours from here. I believe it just opened this year sometime so they’re brand new. In some ways it would be good going to a brand new place as everyone is all, upbeat and hey! We’re brand new yay! Kinda attitude and everything new and fresh. But then also they might not have gotten into a flow yet around what their organization is about their team not having the years of experience to feel comfortable in their skin ETC. Tried to explain this to Jess but not sure she got it. It’s Sammy’s complex intellectual/ emotional way of thinking that goes over a lot of people’s heads I guess

Here’s the site it isn’t much

http://www.gardant.com/gatewayrivercity/

As I was saying about eager to get going, Jess e-mailed them like two weeks ago and they contacted us twice since then once each week. We’re not like running out the door right at this moment obviously. This would probably be like a year or so away. But they called again yesterday so we wrote down our questions and decided to call them back. Get an intro perspective and hopefully be able to somehow visit. Not sure how we’d get there and hope that maybe they’d let us stay the night so we don’t have to get there and back in one day. But anyway called today and the intake staff were out probably for a very important conference. So will call tomorrow.

It says for both places that it’s for ages 22 to 64 with a variety of disabilities. I’m hoping they’ll accept blind people. I believe they accept psychiatric diagnosis provided it can be managed with outside services. As they’re just starting up though I’m hoping they’ll have a flexible attitude. I know someone with mental illness my age who lives in Peoria and know that if needed there are Albany licensed type places in case we needed it. And have heard they have good mental health centers

The second places is edens supportive living in Champaign which is in central IL.

Just to see what it’s about or perhaps actually wanting to move there a bunch of residents from friedman toured the edens places there’s one in Chicago one out someplace else and then this one. The one in Chicago is really bad in terms of very unfriendly staff and not really providing much in the way of help. But the residents I guess were all very friendly.

So hearing several residents saying all this about that one didn’t make me think anything about this other one. But Jess wants to look into it because it’s near where her best friend lives and when I asked Robbie he heard actual really good things about it. So I am curious.

However Central IL kinda reminds me of western MA. Like this Champaign town is like a college town like say Amherst and then you go out from there and the towns get smaller and smaller until you’re in VT. That’s kinda what the area reminds me of. Just a feeling I have. And again we would have to take all the ownership for getting our own psych services and maintaining our mental illness care on our own. I feel less confident about this in what sounds like a smaller town but we’ll just wait and see.

So yeah I’m really conflicted as I post ten million times on here. I love Albany for saving my life for continuing to support me however I am. For the residents mentally able to connect even if we’re not best friends, in spite of their symptoms and for the general acceptance even in conflict that we’re all dealing with something. Since I’ve been here three years my blindness is no longer this weird thing. You have others here with physical disabilities, on walkers canes and then there’s Kat and jo. So having extra issues isn’t a big deal to residents or most of the staff. I have good relationships with many many staff who do spoil me I admit it! With the whole breakfast upstairs thing.

At the same time I’d love to get more than $30 out of my SSI check. Though my parents give me extra money enough for what I need for basic stuff like shopping at Walmart and ordering out, I’d love to have more my check for my own use especially as stuff like having the money to go to support groups, voice lessons go out to volunteer ETC. It would be nice to be in a different community meet new and different people make new connections. Expand a little while still having the safety net I need. And the same is true for Jess

But we both go through huge back and forth feelings about whether to do this or not. Especially me. Because I’ve been there. In an SLF where by the stupid not up to date policies, psychiatric disabilities are considered in some other unsupported category than any other disability. And there don’t seem to be services in the SLF level that reflect the challenges of having both. Which looks like living in a place where both staff and residents see depression as having a bad day. Or anxiety as something you can talk yourself out of. They have no clue about it. Or about what services you need when you might need to go to the hospital need extra support med adjustments ETC. They instinctively most of the time, know that stuff here we don’t need to worry. I just know the terrible feeling of being alone with handling a huge part of my daily life and not being able to connect around it with others and therefore not be able to share my whole self. And the more I feel like that the more I work really hard to appear normal because I’m around people who are well not mentally ill. There isn’t that, being outwardly emotional quirky and even symptomatic is the norm, like it is here. And then that’s when I go towards having a breakdown. I don’t want to put myself in that position even if I were ready, it would still be a hard position to knowingly put myself in. To know that this place is supposed to care for my needs but there’s a whole huge part of me that they have no understanding of. That on some level they’re afraid of and if things get too bad, however they define that line I could be asked to leave. It’s very scary

At the moment there is no harm in talking about it. And visiting would be an adventure certainly. So that’s what I’ve been looking into. If anyone knows anything about these two places I’d appreciate hearing from you.

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the rest of my day talk with Jonathan, Switched at birth project general irritation and restlessness

So other than looking into friedman and how Robbie is doing I’ve done some other things.

Having not talked with him since Friday I snagged Mr. J at lunch. Got to actually sit on the bench and have a good 15 minute chat which is unheard of for most people. But anyway. Progress: The tech guy fixing the mpower needed to order some parts to do the saderwing and so he’ll continue to check in with him. Seems like a solid reliable worker. The fact that he’s remotely interested still shocks me.

He will take over the HP warantie stuff. At first he was like I’ll talk to stephanie. I thought this meant try to give her some pointers and then send her back to it which I firmly stated would not work I think he realizes this and said he’d take it from there once he updated her.

I then decided to take the chance and said I thought Stephanie was just weird. Like she’s come into my life and assummed she knows what I need to work on, what my past around these issues has been like and in spite of this I must press forward anyway.

Like she lectured me for an hour about using the cane more in a building and population where while yes technically blind people should have their canes at all times, it’s often not practical. People won’t move aside, elavators are so crammed that the cane or backpack even feels like one extra extension of me. She wanted me to go take paratransit by myself in a particular situation, the dentists where had I I would have been standing alone on the street for an hour. I think she thinks I’m too much on Jess which isn’t the case. Our relationship is extremely complex to grasp and some never do. It takes a special person like Edith or Nakia or Jonathan to take the time to get it. She doesn’t have that open quality of witnessing of just being with me as Edith did where I felt I could say anything and she wouldn’t freak out or lecture.

Jonathan said this is a goal in itself me being assertive while I’m pretty calm and not in the heat of emotion. I just feel resigned now. If she wants to go on and on about whatever and if I have to make consessions I’ll do whatever small thing just to get her out of my hair. I’ve had plenty of experiences of caseworkers where this is the way you get through I’m willing to go ahead with it.

He said our problem was that she was giving me apples when I wanted oranges. Metaphorically. I’ve been thinking about it and it’s more like I’m not sure I want fruit at all I’m certainly tired of it from meals LoL! Or for that matter I’m not sure I want to even be in the store.

Deep down I feel she and Jonathan are probably right. That I need to be more independen and that I have a good comfort zone here. Not necessarily that my life is “too easy” and that I’ll “never be that mentally ill as I was back then,” I just feel that were I to move to another facility with more open hallways and less zoned out people I’d use the cane just fine.

One reason I’m not so firm on wanting to tell her what I want is I’m honestly not sure what I want. So these goals are as good as any for now I guess. I have no money to go out and do things like any kinda workshop or support group so the traveling by myself is limited as all of our travel is stuff we do together like shopping and the school.

But again I have no better ideas. Besides missing as I said Edith’s ability to read me and intuitively know how to sit and let me process. And by the end of a conversation I can feel better about something by talking it out with her because I felt free to say anything. I didn’t feel this free overnight but there wasn’t the huge struggle there is now or with any other chosen for me PRC because I chose her in the first place.

All this is just depressing. I think I’d have more goals and be more motivated if I were able to live someplace else. Not on my own, Jess and I couldn’t handle that even with support which I know would be sketchy due to the supposedly human service system that’s quite uncaring and tripping over itself. We have Edens to look into and another supportive living place. I’m very concerned actually terrified about not living in the safety of Albany care or another psych place should something happen. Particularly for Jess as things literally seem to spring from thin air. At the same time I feel I’d have more freedom of mobility at a facility where people really got it about being physically able to have the space clear and things like that. And I’d have more money to then do some more things. But the downside is I and Jess would have to fully manage our mental health and I believe physical healthcare. So it’s really a toss up. At least in IL. Then there’s the scarier idea of venturing to another state. There happens to be an assisted living program for psychiatric diagnosed people in NC. But I’m really really not about to fly to another state and settle at a program just because it’s the only one in the country. I learned that lesson. Therefore I’m generally restless on life. And since I have no better ideas will just let this lady do her thing. Fill out her forms and play along. Until I decide if I even want fruit apples or oranges or even if I want to go shopping.

My last downside of the day. Robert and I have been madly working on getting switched at birth audio described. Continuing to try our hardest to get people in the positions of power, at netlicks in particular to be able to give license for audio describers who are ready and willing to work with the show. The problem is we can’t seem to find the right people. And it kills me how some shows are so easily described. But even more frustrating I post to several blindness related groups and I’m totally ignored. Which me wonder if Robert and I are the only two crazy people that want this and that’s depressing.

So that’s about all. For now.

Check out my blog

matterstosam.wordpress.com

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https://samjess.wufoo.com/forms/m1ww2j1h0w1w045/