the last couple days update

Hey everyone,

So now to give my usual update of the last couple days. Sunday I was really tired and off. Took two naps which isnot something Jess usually lets me do because I don’t need to get into the pattern of sleeping all day like I used to. But if I’m really anxious/ out of it she does. Anyway. And then Sunday night was the drum solo at eleven thirty!

Yesterday I also felt very low energy and swore I felt like I was getting my period though part of me thought no way could that be true. The blood test for the prolactin hormone, elevated we think by the buspar, came back with a high reading. Normal is twenty. Mine was forty eight. I was content with the fact that the med had stopped my period, who needs a period especially when you’re not ever planning on having kids. And especially after I heard it’s common around here with residents and psych meds. So I was really loving the past six months.

Well I lost a couple pounds. And I guess my body adjusted to the weight gain over the past six months as well as the med because today I actually have my period back. Am not happy! Figures my gyno to talk about my period being away is next week. Oh well I can tell her it’s back. So yeah not thrilled.

However I was a whole lot more energized. Did not take a morning nap. Did call reddoor animal shelter. Back in 2014 Arica from trilogy who was my caseworker, had set up on the recommendation of the social worker at the psych unit I went to, an hour a month for me to go hang out with the cats at this shelter. Believe it or not so many shelters when she called wouldn’t let me because I’m blind. The answer so much of the world gives before even meeting me but that’s another post.

I loved it. Just being in the presence of a cat, never mind like ten or more was amazing. It was so comforting and just yayness! Unfortunately at some point airica left I didn’t follow up with the new caseworker, trilogy couldn’t keep serving me because I live here and now trilogy is too full for new clients. So yeah. Anyway I decided to just call them back and have Jess and I go. I had called with no answer the past week or so. I was getting worried that sue ellen, the really nice woman who was there when I had last gone wasn’t working there anymore. And since she’d been the one to work with us that without her no one would let us do this kinda special individual time. But I called today and got Mike. Who said she’d be in in the afternoon. Having taken my nap this afternoon I had my phone shut off but just knowing she’s there is comforting. And Jess and I can set up a monthly visit.

So I’m excited about that.

Less excited about a problem that’s coming up in my facility search. Since the internet, obviously is vital to my and Jess’s mental health recovery, the first question I ask a place when I call

And get the front desk is do they have wifi for the residents. Surprisingly I have a count of four places that have saide no. Which automatically knocks them off our list of possibilities, including the central branch of Margaret Manor. We were gonna go there and compare the two but not now. I just don’t understand it when it’s such a part of daily life for so many people. Well anyway. I guess I’ll keep looking. Thursday we’re going to Belmont crossing. And Columbus Manor did say they have internet so that can be our next stop assuming it’s in a safe area. Due to the traumatic gyno appointment we were thinking of maybe setting up the kitty visit for next week as a treat. I can think about cats during that whole ordeal and maybe I won’t cry as loud. (sad face)

So yeah that brings everyone up to date. Oh talked to my mom yesterday. I feel so bad for her. She’s a person who just can physically not handle meds. And she has fibromaljia and so many of those meds I guess have really hard side-effects or can. She says she’ll never be a drug user LOL! Anyway they put her on tramadol which I’ve heard others here take for pain. It made her so sick once it went into her system I felt so bad. She had throwing up and everything. Then they wanted her to take symbolta which she’s already tried. I just wish there were some meds she could take because the fibro kills her sometimes.

I’m just glad no one has said she really needs to take meds for her mental illness though, she does have one, a mental illness in my opinion. When I first went to college and she had this huge breakdown that’s when they tried symbolta and Ativan and stuff but she would just throw the pills out and it didn’t work. I’m surprised she was able to handle painkillers after her surgery. Anyway we’re all glad that’s over with. And the pets are still doing well.

So yeah you’re up to speed in Sam’s life.

connecting with blogs through twitter loving it and a request

Hey everyone,

So for the longest time on twitter I’ve just been going through and hitting the follow button. I had a great time finding so many mental illness suffers, people dealing with different disabilities and others with so many similar interests. But due to absolutely hating the messaging aspect of twitter, I never really went further than that. And then I wondered why I wasn’t getting as many readers to my blog. I said to Robbie, Robbie I should probably like actually read the blogs of the people that follow me/ that are on twitter. He’s like Sammy I think that’s a good idea! What would I do without him. I wouldn’t have a working computer at all first of all! I also wouldn’t have another best friend who can handle my craziness and has his own crazy ways, but we’ll rule the world one day!!

Anyway so am having the best time following the blogs especially the wordpress ones. I like wordpress because it’s really easy to follow blogs on there. Blogspot I don’t really like because I don’t see a way to follow the blog unless you use some reader thing that I don’t know how to use and I’m kinda stubborn about learning new stuff. Later maybe I’ll highlight some of the blogs I especially like.

Anyway, sadly there are some twitter users I like what they’re into but they don’t have a blog. And as I said don’t have much patience for the messaging part of twitter at all. I wrote someone when I saw they didn’t have a blog. They’re in Chicago and have similar issues to me and I wanted to get to know them better but not on twitter. They said maybe they should and asked what I liked about it. When trying to reply for some weird reason I’d like type one word and it would let me know I was down to like six characters! I tried like six times and that’s what it would do. Eventually somehow don’t even know how I got to be able to type please e-mail me and gave my e-mail. I really really hope she e-mails me because I do want to get to know her.

To me Twitter is just a great place to get my blog and youtube though I keep forgetting to make videos, out there! It’s extremely hard to do anything else with it. Even with the direct messaging there’s a character limit. I wish people without blogs would put their e-mail addresses in their info. Or would if someone requests it send it privately. This way there’s a solid way to communicate outside the limets of twitter. Just a thought. Or you could create a really cool blog! Robert Kingett can do it for you for $15 an hour. He really needs the money, for cookies and paratransit money/ tickets to come see Sammy!

nightime music therapy to prevent SI

Hey.

So really really funny story. Sunday night I was very restless. There was a thunder storm which didn’t do anything good for my anxiety. I had just had a weird day. Looking back now I’m sure part of it was my gold old time of the month resurfacing itself after six months of a wonderful vacation! Anyway so I kinda wanted to scratch (si)

So for some weird only Sam would do this reason, I went to my basket under my bed that has a few toys in it: a rubber ball, a morackaa squishy wooden toy, and a little bongo drum. I’ve had this thing since college and carried it around to expressive arts courses and women’s drum circles I’ve been to. Not that I’m into everything about a drum circle but the woman running it was really nice and it was fun and got me out with people.

Anyway so I start banging on it and it was a great way to release my pent up emotions and I didn’t feel like scratching anymore!

This would have been great except it was eleven thirty at night! Jess was sleeping in the next bed. She was startled awake by this banging and honestly didn’t know where the sound was coming from. She thought I was banging on my braillenote which I wouldn’t ever do but yeah! Anyway it took her til the next day when I told her it was the drum. So yeah I woke her up! She says she’s glad I didn’t scratch, but next time save my musical expression for the daytime! LOL! It goes down in the books as another big sisterhood experience! ,

Book Review: A circle of Children by Mary Maccracken

Hey everyone,

So today I have a really good book I’d like to tell you all about. Mary Macracken was a special education teacher in the 70s. This book, a circle of children, is copyrighted 1973. At the time all children who had any kind of mental/ emotional issue that seemed unexplainable by doctors were classified as “seriously emotionally disturbed.” It seemed back then kids were thrown together with no correct diagnosis and often parents were blamed for their child’s issues. They were put in these classes because their odd and constant behaviors, aggressive or withdrawn, interfered with the functioning of other classes. Professionals most of the time didn’t have the time or ability or at times the desire to try and help with something they didn’t understand and often would just rather blame the parents or say there’s no hope for these children and put them in institutions.

Mary came on this scene as a junior league volunteer. Honestly I never heard of the junior league must be some women’s club thing. Anyway she’d volunteered a lot of places and went to this school opened by an extremely committed passionate, but stripped of resources director. She and her friend observed the children at circle time, singing good morning to each other, skating and galloping and how the teachers lovingly and firmly interacted with them. Mary was awe struck right away and knew there was something here she felt a connection with. Her friend, as many would be was scared off by the place. But mary took the time to speak to the director and asked to volunteer as an aid in the class.

Something that would never happen today, to have a random person be an aid in an class never mind a special education one. Still she started out a couple days a week. She was placed with Helga. A physically strong woman with a very pronounced German accent. Right away Helga took one look at Mary and basically said to get lost. She didn’t need a volunteer screwing things up and getting in the way. For the longest time she called her “volunteer” or didn’t acknowledge her at all. Still Mary made herself useful in whatever small ways she could, filling watering cans, cleaning up ETC. Mostly she observed Hega intensely.

Helga’s way of working with these kids was like nothing Mary or any doctor parent or care provider at the time had ever witnessed or would believe if they weren’t there to witness it. These were children who for whatever reason had gotten to the age of about six through ten without being toilet trained, eating properly, speaking, walking, knowing hot to interact with anyone ETC. Whether this was originally caused by a trauma or serious of traumas or biochemical condition, Helga was one who could sense deep into these children. And figure out that a lot of this behavior and stunted growth had to do with it being perpetuated by parents who didn’t know what else to do, and by no one taking the consistent firm but loving approach of setting expectations showing them how to do things and waiting it out til they did it.

An example is a girl Sarah who was carried up by her mother and put on a blanket. The mother said Sarah would lay there all day and do nothing and was to be left alone. Right away Helga took away the blanket and hid it in the cupboard which caused quite an uproar form Sarah. Helga looked her in the eye and said if she wanted the blanket she’d have to get it herself and she knew she could do it. Very slowly over days and days Sarah was able to crawl to the cupboard. With more encouragement over time she could stand and then walk. This was done with different objects such as dolls to motivate her. The progression was slow and built on success always but was consistent and never ending. Eventually Sarah could walk up the stairs and walk then normally. Helga to Mary’s surprise didn’t give huge praise to the children, she acknowledged their success with a hug and smile and kind words but then moved on to the next thing. These after all were expected behaviors for a child.

With all children Helga brought out the hidden abilities inside them to allow them to master these obstacles with love and support and yet always stepping bacvk and making them do the work. The children became toilet trained could walk and talk, eat properly ETC. This when so many had said these children couldn’t do anything.

The next year Mary substituted for a class for 12 weeks. She worked with their children in the same manner she had seen and participated with Helga. She got them all except one to be out of diapers/ training pants. Them all to eat properly and interact appropriately. She made huge strides in 12 weeks and watched as incredibly the children who were getting better would coach the ones that were behind in little obviously unaware ways gently pushing them to the next step.

Mary then volunteered for the fall with a class where the teacher believed in “permissive teaching” or something like that. She said the problem was the kids weren’t allowed to do what they wanted as babies so now they were given basically freedom to go wild. And they did. She had a tub of water and the kids would dump it on the ground and go to the bathroom in or near it. And just totally go crazy. Mary was so discouraged and fed up she asked to leave the class.

Soon Mary had students of her own. And there was a teacher Dan down the hall who she connected with as she was starting her own class. Dan had his own personality and style. Very rough but also gentle, insistent playful, basically what you’d imagine in a father figure. The two classes would do things together mostly outside play once their schoolwork of the morning was done. When they joined forces and taught in the same room was when the real healing began.

There were kids ages six to twelve roughly in the room. Mary and Dan had to taylor the work to all levels and so no child was bored. Giving each child a part in the lesson. For example one child just learning letters would sound out a word. Another would write it another would use it in a sentence ETC. Slowly as in all activities Mary broke down the barriers of learning so in each child there was a creative way to teach. For Brian for example he would only do puzzles at first. So she made the first page of a book into a puzzleand he learned to read that way.

More important than reading and writing, (though Mary in particular insisted on these skills as she hoped to be able to have most of these kids mainstreamed as she saw their potential) were the life skills the real time social skills. They had no circle time, as Dan thought that was a babyish thing to do and not helping them with their maturity. They did the pledge to the flag, sang different songs with motions ETC. Their first group experience was climbing a mountain. It went well until one of the kids went missing. It was a huge ordeal that eventually got the polece envolved but it was the first experience of something very wrong going on and it brought the group together rather than apart.

Since then Dan and Mary took the kids out at every oppurnity. They had weekly trips to picnics, stores, museums, to ride the buses, trains, the merry go round, a pony ETC. Give them as much experience with the world as possible in the time that they had. For many these children had been so isolated by parents that didn’t know how to cope. They had never experienced anything like this. Often the children got overwhelmed and their behaviors escalated. They would give that child a chance to calm down/ intervine but not let it be the reason why something was stopped they would insist the child participate even through fear or aggression. And for the most part had good results.

This was also shown in weekly swimming. Where Dan, Mary, and a couple of other staff took the children to the Y and taught them slowly to swim. They had ups and downs with it but broke through fear and odd behaviors, and it was something they all took pride in.

Mary solved many puzzles. One was Brian. He flapped his arms in an autistic kind of way and had no intelligible speech. It wasn’t until she was trying to do speech therapy with another child, (the speech therapist insisted he had no time for this kid so she got a how to book and got on with it) that she realized Brian could speak normally. If she slowed down the speed on the tape recorder you could make out his speech completely normally. He had somehow learned to speek incredibly fast and in a high pitched voice. It only took her showing him she knew his game and getting him to manipulate one sentence, slower faster, louder softer for him to then be able to speak normally. Out of habbit he’d do it first, and then later when stressed but if she told him to slow down he would.

Another puzzle was Brian’s eating. He would eat nothing but crackers and milk all his life. His mother claimed it was abuse at a daycare that caused it. For the longest time they just insisted Matt sit at the table with everyone. They watched him progress in other areas. Again the mental health professionals seemed not too worried or interested in helping in this matter saying it was pretty hopeless. One day they told Matt that he had to eat one bite of food. This turned into a battle which Mary admits is probably one of the worst moments in her teaching. Where she and Dan kept forcing this piece of hot dog into his mouth for a couple of hours. They were sure they’d traumatized him. The next day he returned as his regular self when the food was in front of him at lunch everyone pretended to look the other way while he took a bite on his own. Slowly his eating progressed but the major wall was broken.

Dan Mary and the eight children became so close they were a virtual family. They shared an amazing Christmas party together. Dan went to florida to help another teacher starting a school for teens. Mary came back from school vacation and saw that to her sadness Dan had to remain in Florida. The man had died and Dan was left with the school/ project he’d left behind. The director had gotten a new teacher. By this point Mary had taken many college courses and had synthesized her on philosophy about teaching. She took what was good from courses, which at the time she thought wasn’t much, with everything she learned from Dan, Helga and her own intuitive nature. She called it “LASER teaching” Love Amplified by Structured Educational Reality.

Furthermore the poem at the end of the book, that hung on her door for the new teacher to see read:

Teacher

I will know you.

I will touch you and hold you

And smell and taste and listen

To the noises that you make _and the words, if any.

I will know you.

Each atom of your small lonely, aking, raging, hurting being will be known to me.

Before I try to teach you.

Before I try to teach

I must first reach you.

And then when I have come to know you, when I have come to know you intimately,

I will insist, gently, gradually, but I will insist

That you know me.

And later, that you trust me

Then yourself.

Now, knowing each other, we will begin to know the world_the seasons, the trees, animals, food, the other children,

The printed word, books, the knowledge of what has been recorded.

Then as surely as surely as I moved toward you

I will move away.

As I once insisted on being close to you,

Demanding entrance to your half wild world,

Of fear and fantasy, refusing you aloneness

So now; I move away.

As your words come and your walk quickens ,

As you laugh out loud, or read clearly with understanding

I stand behind_ no longer close,

Available but no longer vital to you.

And you _you grow

! You are! You will become!

And I, the teacher,

I turn with pride in you,

Towards my next child.”

Sorry for the super long review but I hope you enjoy it. It took me a long time to copy that oem so you better read it! LOL!

guest blog posting

Hi everyone,

Just a quick post welcoming anyone who wants to to be a guest blog poster!

Feel free to just write me at

Nelsonsam68

Or comment with your e-mail. You could post really about anything mental illness/ health related, disability related, blindness related ETC. Basically anything I’ve covered in this blog perhaps another review of a book I reviewed, if an author ever wanted to comment on my reviews that would be awesome! Or as I said any experiences anyone has with therapy, psychiatry, other mental illness treatment ETC.

I know so many enjoyed Robert Kingett’s post on his initial experiences with therapy. So wanted to let people know they’re more than welcome to contact me about any of this!

Pet saga no not the game LOL

Hi everyone,

So a story from last week…

My family back in MA have three pets. Two cats, one Lucky and one Simon both all white. A yellow lab named Toby. I haven’t seen my pets since 2012 when I went to Friedman Place and moved from MA. Since then due to emotional circumstances I haven’t been able to visit. I’m hoping now that I have good support from staff here and my awesome friend/ adoptive sister Jess, we can make a visit happen in the next few months and it’ll be good.

Anyway. So Simon is like 14 or so years old. We got him for my sister when she was five. She was desperate for an all white cat. Apparently those are very rare. Had to find a shelter in Lulinberg called Pat Broady shelter to find Simon. He was a rescue abandoned in a laundry room. I remember we got him at six months old. He’s always been the dominant it’s all about me cat. Something interesting though is whenever he would hear us crying mostly from my mom yelling or an argument between my parents he’d come right in there stand there like ok what’s going on! My mom would call him Simon the judge.

He’s had some health problems. He had a UTI from dry food. I guess didn’t agree with his system so then the cats just didn’t get dry food. Oh forgot to say before we had Simon we also had Smokey. Smokey was supposedly my cat. We got him in 1994 when we moved from my mom’s apartment to our house. We went to Buddy Dog which isn’t the best shelter. Smokey hid behind his dish and was incredibly skittish. Sadly he wasn’t the cat I had hoped for a cuddly thing I could carry around. But he did love my mom and if anyone could pet him it was her or me. When he got wicked old like in the last couple years of life he would come up to people and eat out of their hand he liked steak and let people pet him. He died in 2008

Anyway back to Simon. I’m not sure when he started peeing everywhere. But yeah once he started there wasn’t much to do to stop it. We had litter boxes upstairs and everything. The vets just said it’s a psychological issue. Not having enough money to afford someone like that Jackson guy on animal planet to come in and do therapy, we’ve had to deal with him peeing everywhere, on the table on my sister’s school books in shoes ETC. I will say he never peed on any of my stuff to which I’m very grateful!

His biggest issue for some reason has been constipation. I think it was in 2007 we thought we lost him because of it. This one vet was so dumb charged my parents who knows how many thousands of dollars to do a colonostopy my mom still has the CD of it LOL! Yet they failed to actually give him relief by cleaning out his insides from all the constipation while they were in there. So he had to go to a different vet for that. Since our cats are indoor and extremely well taken care of, and vet bills even for check ups are off the wall my parents don’t take the cats to the vets much at all.

So for future reference my mom did get this oil type stuff to put in his food or squirt down his throat. She keeps an eye on that aspect of things and it’s been ok. About a week ago he was having big problems with it as in not going for days and days. Rather than going to the vets at first she googled constipation in cats and found out that laxatives for babies are good as well as believe it or not pumpkin! So my mom nicknamed him pumpkin. You put it in their food and it’s supposed to help.

So anyway none of that was working. And he’s so old my mom didn’t want him to go through any pain or anything from the vets. So she was about to take him but then he did go to the bathroom. And when she did take him to the vets the vet said his heart liver ETC are all good and he probably has a few more years! My dad is kinda frustrated with that because Simon is not his favorite cat for obvious reasons.

At the exact same time our lab Toby was having major problems. He’s a yellow lab we got in 2005. We got him from a really good breeder. Soon after we got him he started having ear infections and itching like crazy. When we took him to our local not very smart vet they said he would go deaf from the severe infections. So we talked to the breeder who gave us the name of a vet in medfield like forty five minutes away. But this is an extremely good vet who specializes in dogs.

So obviously we found out he’s certainly not gonna go deaf. It’s just that he has a ton of allergies. Upon testing we found out among a whole list of other things he’s allergic to grass, I’m not kidding, and cats! And yes we still have our two kitties. He really can’t have people food because that aggravates his ears. They have to clean his ears which he hates! Then he chews his paws. We took him to the vet for that. They said he’s bored. Between the cat who pees for no physical reason, and the dog that chews his paws cause he’s bored we really need the animal psychologist! Anyway so recently they got this new med for his paws. And my mom thinks that’s what caused this problem. The vet thinks it was a stomach infection. Anyway last weekend he all of a sudden just started collapsing. On Monday morning he could only move his eyes it was so sad. Everyone thought he’d have to be put to sleep. My dad took a video to show the vets. The vet said he thought it was a stomach infection. So he was put on a bland diet and given antibiotics. So he’s doing better.

I’m so glad I finally found out about all this on the day they both had basically gone on the mend because if I had found out in the middle of it I would have been just completely devastated that this was going on and I couldn’t see them. My sister joked that all we have to do is threaten to put them to sleep and they’ll get better! So that’s our pet illness story. I really hope soon I can see them makes me want to do the visit as soon as we can. I’ll make videos of them and post here.

annonymous survey on prefered method of online mental health support

Hey everyone,

Hope you’re all having a good Sunday.

So going off my latest topic on the different venues of online peer support I decided to launch my own unofficial informal for the heck of it investigation into the issue. I created a survey! Well I wrote out what I wanted and my amazing super tech best friend Robert Kingett put it online yay Robert! I seriously couldn’t survive without you emotionally or computer related!

So below is the link. It’s totally anonymous , it doesn’t even ask for an e-mail just collecting data. Will do a follow up post with results at some point. Feel free to comment. About the survey please be gentle about the fact that this is my first ever survey! Well that’s not really true. I did one in research methods and stats both classes were horribly boring and I don’t even remember/ want to remember in the case of stats whatever we did. I took my ideas off surveys I’ve done in the past and made it as simple as possible. So please feel free to respond and also comment here if you wish.

Link:

https://samjess.wufoo.com/forms/zfalva01wb12s0/

prefered venue of online support for mental illness short version

Hi everyone,

Thanks to those of you who have commented/ liked my previous post both on the blog and on the e-mail lists I’ve posted it to. I do realize that it was quite a long post! So will shorten it and hope it’s easier to read through quickly and provide thoughts.

My purpose: To do a little study on what is most popular in terms of venues for online support for those with mental illness. I’m purely discussing support venues for those who have any kinda mental illness in general with no specific population in that group singled out. venues and thoughts I’ve gotten so far.

E-mail lists:

Pros: more personal connections with members than forums/ facebook groups. Good for people who prefer doing things through e-mail as it can be more simple to use. More accessible to people that are blind particularly groups.io

Cons: is an older venue many people haven’t heard of it. Often not well moderated and easy to spam can be difficult if it’s a small group and one person is dominating or people there for chat purposes only. People may be reluctant to put their e-mail anywhere where they feel like people might find it. Might not know how to use or think the website feature of the e-mail list is safe/ will work. Worried about their e-mail box filling up with a high traffic list and might not know how/ want to create another e-mail address. Sometimes no one is on to talk at all.

Facebook groups:

Pros: lots of members on the groups to talk to. People who love and use facebook for everything have easy access to support.

Cons: difficult to admin/ moderate large groups such as the ones currently available. People often post things and there’s no way to prevent it, spam triggering photos ETC. A lot is up to facebook admins and so a lot is out of the group admins hands. Higher risk of viruses with the adds (I feel) than with forums or e e-mail lists.

Forums:

Pros: A wide variety of perspectives. Can block a person if you don’t want to hear what they have to say and still get support. Can be very well moderated as in psych central. Good interface for sighted people. If someone wants to say something/ ask a question that they feel shy about asking in a smaller group environment such as an e-mail list they can post to the forum and feel better about getting it out there to a more anonymous crowd.

Cons: Can feel less personal than an e-mail list with not knowing people’s names only screen names. Sometimes not very good accessibility for blind people. If you’re not an admin sometimes it’s hard to deal with rules/ policies or getting account shut off/ posts removed.

Youtube community:

Pros: get to see/ hear people say what they’re going through and respond in a more personal way as audio and video lend themselves to. Can also private message. There are many in the mental health community who have been youtubers for years and are quite welcoming. Even if someone doesn’t respond to something you’ve put out there it can stay up as long as you want, and so years later someone can find it and know they’re not alone by seeing and hearing the rawness and emotionality of what you’re going through.

Cons: with google linked with youtube it can be difficult to set up an account as you have to go through google and it’s a long process. The crazy adds. Often not getting a lot of responses in comments for videos. Not being able to do video responses anymore which cuts back on sense of community. No feedback is discouraging.

Hope this helps make it a more concise post. Basically looking for the most popular venue. Wanting to decide whether to close my general mental health list or not as almost all current members are members of my other active lists and so don’t need to be sitting on an inactive list as it’s not necessary. Would like feedback on where I could best use my talents in the different venues out there. Hoping thispost is easier to read and so people will feel more able to comment. Would appreciate more thoughts! Especially experiences on different venues and how you’ve liked getting and especially giving support there as an admin/ moderator ETC.

what’s people’s prefered way of geting support for mental illness online

Hey everyone,

So I was just sitting here thinking about the different forms of online peer support around mental illness. And how for so many people it can be all the support that they feel is available. People can feel like friends and family don’t understand or they’ve worn their friends and family out, even if it’s just the depression/illness making them feel this way. They can feel like they want support other than their therapist but not have anywhere to go. Or just would rather get anonymous support.

For these and so many other reasons there are so many different avenues of support available online.

Forums.

Sites like psych central have had different forums for many years. They’re free (mostly just ran into one where you actually have to pay the organization and I couldn’t believe it!) anonymous and easy way to connect with so many people going through all sorts of challenges that you are. People are under generic usernames so it takes the fear of someone you know finding out. People do have the usual for your own good suspicions about opening up to strangers online but if well moderated can be a good experience.

I was on the psych central forum for a year or so particularly the psychotherapy one. I found many people to be extremely supportive and empathetic. But there were others who could give harsh feedback as if they know you inside out and how things should be going. This turned me off the forum, that and the feeling like these were just huge numbers of nameless people and I wanted to get to know people in a more personal way. Which is why I started my e-mail list.

What are people’s thoughts on forums? Any good/ bad experiences? Forums you’d recommend?

Another reason I left psych central is I hated the need to have to use something that wasn’t very accessible to my screen readerand having to scroll down a page with the arrows as there is no headings or be sure to arrow over to buttons because they’re not clearly displayed got old. As usual with sites and the blind it was working fine when I got there in the beginning then someone updated something probably to do with some stupid let’s make the screen look nicer issue and it got all out of whack. Oh well.

E-mail lists/ groups.

I’m not sure where I got the idea to start an e-mail list/ group I honestly don’t. I know I joined a couple yahoo groups for the blind and there was some discussion on one about people who have been abused that was so painfully off the mark with people getting hurt feelings very quickly, the moderator not at all experienced in this subject just said to stop talking and “go to our corners.” ETC. I knew then there had to be something better out there. So that’s how I created blind mentalhealth. But anyway since then especially recently as I’ve run into so many facebook groups I’ve discovered people are suspicious and reluctant to join an e-mail list/ group and many don’t even know what one is.

There are many platforms for e-mail lists/ groups. Yahoo groups used to be really good until they did some major updating and basically screwed up the site for everyone. But we’ll take their site as an example because it’s most well known and explains it clearly. So when you go to a yahoo group I think there’s a thing that says to join and you put your e-mail in. Here’s where people start to panic because they don’t want “their” e-mail associated with something like this afraid someone with bad intentions will get ahold of it etc. Well to solve this you can have an e-mail address just for groups you join which would separate group messages from your regular mail. There are settings on the group page to get no e-mail and so you can work with the group just as you would a message board or forum, writing, responding to and reading all posts on the site. This is something I really wish people would try out. I try to explain it and they just don’t seem to believe me. Also if you pick a good group, that is one with private archives that’s well moderated, you can probably tell that within the first few posts to the group as in whatever you start reading/ when you do post, you’ll probably be ok. Yes I’m sure there’s probably a way for some crazy bent on destruction hacker to figure out how to go in and get people’s e-mails even though good groups set it so all addresses are hidden ETC but I have yet to have a problem with it.

I’m very curious though about people’s thoughts regarding e-mail lists/ groups. As yahoo groups went down the drain other platforms have come out. Most recently groups.io which is totally safe and accessible. I believe there are still also google groups. Not sure how accessible they are I tried to get blind mentalhealth over there and it was the most frustrating day ever so yeah. Anyway I want to know people’s thoughts on e-mail lists. Because obviously my blind mental health group will be here for ever and ever and I’ll always take good care of it. But I don’t want to keep shoving my living with mental illness group at people if they’re not interested/ afraid to use e-mail lists. I’d like to ask people so I can know where to go next in terms of where to put my energy in supporting people with mental illness in general. Is there something I can do to make my e-mail group more appealing to people, promote somewhere I haven’t thought of ETC?

Facebook

I think I was trying to find places to let people know about blind mental health when I discovered facebook groups. Previously I had had my sister set up a profile for me years back because well everyone has one and that was about it. Really didn’t post much of anything. Sometimes read people’s walls ETC. I was thrilled to discover that they had these different groups for everything you can imagine.

I got an insight into why no one knew about e-mail lists anymore/ never heard of them because this was like the new thing. I noticed a few problems with it rather quickly. First many groups especially a lot of mental illness related ones have literally thousands of members! I never saw anything like it. And it’s just as unorganized as you would think. I forget how many admins they have on these groups but there’s no way you can moderate that big a group effectively I would think. Plus they’re constantly having problems with spam and virus adds getting on the group which I know can happen with e-mail groups but it hasn’t happened particularly on groups.io. And then you had people posting offensive/ triggering pictures, having issues with a lot of this being out of the mods control as it is facebook that’s responsible for the groups being on there, like in the end people’s accounts can just be closed/ suspended and it has nothing to do with anything in the group and just other really weird difficulties that I don’t think would ever come up in another setting at least that I’m aware of.

Part of me wants to make a group just to try and do it right LOL! But I’m not sure how accessible it is to admin. Plus it’s just soo weird having to scroll through all those posts to find anything and not get e-mail updates like on a list ugh I just think it’s soo annoying! In spite of this obviously a lot of people love it or there wouldn’t be thousands of members. I just don’t know how to make a group in that setting a secure drama free place which I’ve basically mastered how to make an e-mail list that which is why I’m such an advocate for it.

Youtube.

I didn’t start making videos until 2012 because I finally got a computer with a web cam. But I remember being on youtube and watching all these videos and it seemed like there was soo much out there in terms of mental illness support and people making videos and it just being amazing. I remember this user named SFJane. She did all these videos about her life and having mental illness and how she got better. She now has it in a book which I hope to read and review next. But it was amazing because all these people whether they agreed with her or not (she has definite anti mental health system views) would just be watching her videos and so engaged with her in discussions. I’ve heard from people like Tomy Jamison that there used to be this huge DID community on youtube and it was amazing. I don’t know the history of youtube but I know things got worse when they made the “new youtube.” Where it’s linked up with google and you need a google account to join and you can’t do video responses anymore you can’t see your subscribers subscribers. And then there are the stupid adds! . And it would make sense that that would really cut down on the huge community feel of everything. There are still happily a lot of people who post about mental illness and connect up on youtube. I never would have known Tomy Jamison who’s this amazing woman/ DID system if it weren’t for youtube. Again I want to ask what people’s thoughts are on youtube and the world of vlogging for mental illness support? Because again I’m putting out these videos and overall am not getting a lot of feedback or views and am just wondering what people’s thoughts are on the issue.

To sum up this whole thing: I’m an extremely passionate dedicated creative supportive person. I want to put my energy where it’s most needed and be in the spot where I can connect with the most people around what matters to me/ them. I did that with blind mental health. That will be my online nitch forever. One day I’ll get an award for starting, what people keep telling me is like the only safe place they’ve ever known of for blind people with mental illness to just go and be honest day to day hour by hour minute by minute about what really is a life changing and daily struggle.

But I want to find that same space in the general mental health world which I actually thought would be way easier than finding people who would join my blind mental health group. It seems to be way harder even after months and months of just promoting. So I figured instead of just promoting I’d ask people for an honest evaluation of the available online resources and to let me know what they prefer using. And then I can go from there and just be where the most people are. Thank you for reading this huge long post! And please please comment! If you read you have to comment LOL! And share with as many people as possible even if it gets facebook group admins mad LOL! I look forward to getting some really good feedback and going forward.

Book review: Mummy’s Little Helper by Casey Watson

Hi everyone,

The book I’m gonna review is Mummy’s Little Helper by Casey Watson. Casey Watson is a foster carer in England. She has written many memoirs about the different children she has fostered over the years. She and her husband Mike do a special behavior modification program meant to help the most difficult children. Almost all children they work with have severe behavioral problems have come from extremely abusive families and have been in many failed placements.

In this way they are quite surprised to hear from their social worker, John Fulshaw, about a nine year old girl named Abigail (Abby) who is being placed with them. Abby does not by any means have a history of being abused or neglected and this is her first time in care. Her story is in it’s own way very heartbreaking. Her mother, Sarah, has had had Multiple Sclerosis since Abby was born. Over time as her condition has gotten worse Abby took on more and more responsibility for her care and running of the house. Until at nine years old everything to do with her mother’s care, and caring for herself and the house was on her young shoulders. Abby knew no different as this was her whole life however Casey and everyone working with the case found it shocking that the family was so isolated that they had lived this way for so long with no one finding out.

Abby arrives at Casey’s house very much in distress due to her mother being hospitalized after a neighbor discovered she’d collapsed and had alerted social services. This had brought Sarah’s circumstances into awareness of others which is one thing Sarah did not, that she’d worked her whole life to protect herself and Abby from being separated. As the shock of being in care starts to wear off Casey and her family notice some striking anxiety issues even within the first days. These include pulling her hair out seemingly unaware of it, flicking lights off and on, tapping door frames and being constantly alert to goings on in the house. The first night Casey discovers that Abby can cook and clean and is very particular and worried about things like what the temperature for the heating system is set at, or the temperature for the fried or how many lights are on.

Casey finds this behavior odd but hopes it’s just the anxiety of being in care. Very quickly Casey discovers this is just the tip of the iceberg. As Abby is living separate from Sarah, having her rigid constant routine of caregiving distrupted, Abby displays more and more anxiety and odd symptoms. She’s constantly asking if the hospital staff know how to take care of her mom, that her mom just needs to come home and have Abby take care of her and she’ll be fine. That such a responsibility is on Abby’s mind every minute of the day makes Casey really feel for her and Casey tries to work on giving Abby as many normal childhood experiences as possible and helping her to unlearn some of the huge responsibility she’s been carrying for so long.

This is nowhere near simple. As time goes by it’s very clear that emotionally Abby can not relax and do anything a normal child would. A simple walk in the woods reveals her panic about contracting tetanus from a harmless fall. Being around Casey’s grandchildren shows that Abby can’t even play with other children without constantly and anxiously watching out for them to the point of being overbearing and dominating. The fears around anything health and safety related are constantly overshadowing all activities she does. Meanwhile social services are trying to figure out a plan for Abby’s future with her mother. Things look less and less positive for them as there seem to be no family or friends to help. Along with this her condition continues to get worse with infections and reactions to treatment.

Abby visits her mother and Casey witnesses the matter of fact often unemotional dynamic between them as they are more like caregiver and a sick person rather than mother and child. At home Abby’s anxiety symptoms get worse and worse. The tapping, hand washing, checking light switches and hair pulling escalate until Casey discovers Abby is actually experiencing o obsessive compulsive disorder or OCD. She contacts her family Dr. about this and is given instructions on preventing Abby from acting on the thoughts and performing her rituals, and telling her that these are just thoughts and not reality. She works gently but consistently with Abby on this, but as some behaviors disappear more come up which a psychologist consulted later says is a common response.

Casey has more pressing things to worry about however. As a passing comment from a friend mentioning a possible sister of Sarah’s, which Casey mentions in the heat of an argument launches an unexpected and overwhelming complaint and investigation by social services. Casey’s name is cleared and the relationship patched up by Sarah but the effect is sobering for Casey and her family.

Like in many of Casey’s books there is a surprising good ending. Not fairy tale happy but a workable solution no one expected that allows Abby and her mom to live together and for Abby to get the childhood she was meant to have with her mother safely taken care of. The epilogue tells us Abby is doing well in school two years later enjoying various hobbies, and is part of a young carers support group in which she earned a medal. She also continues to attend counseling for her OCD which is improving.

I loved this book. It shed light on an issue I never even knew about which is a child caring for a family member by themselves. I always assumed if a parent/ relative had a chronic illness they would have things in place to get the care they need and also have care for their children. However I can totally see from readin this story how pride, fear of separation, and desperation can push a parent to feel the only option is to sacrifice her child to the role of caregiver and that this will do a solution as at least they’re together. The mention ofseveral support groups for kids in this same situation brings home that this is a problem more common than one would think. I would totally recommend this book! I welcome comments a about the book or experiences being a young carer of a parent or any themes discussed.