busy day: Going to Jess’s school, long ride home, and other things

So today was a very busy day. First time I’ve been out since I got this cold.

Jess was fine with going on public transportation though it would be a new route for her because she wanted me to rest. But I firmly insisted on taking her. She seems to be ok with the bus ride to therapy but don’t want to push things.

Being at the school was great. During the bed bug crisis Mr. J gave me these super expensive headphones! They like cut down on half the noise in a room which is awesome to begin with. So I got to listen to a book on my player and have half the noise in the crowded room with people doing testing and tutoring and stuff cut down.

The worst part of it was going home. We left at three thirty after sitting outside for some fresh air much needed. We didn’t get home til quarter of five. I guess I haven’t been doing paratransit much as I’m totally not used to the long rides. Jess claimed that we’ve had longer rides but I can’t think of one! I was very antsy and had to really go to the bathroom because I didn’t go before we left.

But first we stopped at Karen’s. She was in a very patient relaxed mood which was nice. I told her about my hard morning itching and anxious over any little mark. And how I thought I saw a bug but it was a piece of toenail LOL!

She said this was a totally normal reaction to this trauma and she went and called one of the really good nursing assistants on our floor who has dealt with this in her own home extensively. Karen promised that we’d continue to keep an eye on our areas and check the beds. I told her Friedman used to do this weekly, or twice a month probably don’t anymore because everything’s cut. But she agreed it would ease everyone’s minds.

Of course she did check and we’re bug free!

So that was that taken care of. While we were there talked to Karen about my stomach issues how bad the food is here, the snacks how weak I get ETC. At one point she said should we be checking your blood sugar? I’m like no that’s ok!

She said that the dietician that does come in once a week would be a better person to talk to. She also thought that nursing should have a bigger role in dietary stuff nutrition and a hand if able in what food we get. But that change will probably take forever!

I’m happy to talk to the dietician but I’m skeptical of how much she can be helpful. I’m also eager to switch doctors so I can have a better conversation with one about this and not be totally annoyed.

Other than that it was an awesome day!

Really wanting to start a group for anyone who lives or has lived in MA around mental health

I’m not sure if I’ve made a specific post about this yet.

As I’m considering looking into what MA has to offer I feel strongly that making connections before even seriously considering things is very important. Sites that advertise services always look so good in theory. It’s vital to talk with people who have been there. Talk about specific issues like how hard getting services is, specific recommended agencies/ people and other things.

All the facebook groups I’m on deal with everyone from all over the world. Which is great but more and more I’m wanting to focus on the state I’m considering moving back to. Especially as when I was there I really didn’t know much about the mental health system as such. Plus it’s been a few years.

To widen the possible membership I’m including others with any disability in the mix. Because I’m interested in the disability community in general there as well. For example would be very interested to link into the deafblind/ deaf communitys.

I am also including those who have moved but have experience with these issues when they were there. A good friend has provided amazing insights and resources and she was getting services there many years ago.

I’m hoping I can find enough people to start an FB group or group on groups.io

Please pass along or comment.

still sick but doing a little better long term plan thoughts

I hate having a cold! I don’t remember the last time I had one. It’s worst in the morning and at night. This afternoon I was kinda restless couldn’t take an afternoon nap which hasn’t happened in the past few days. I also talked Jess’s ear off for a good forty minutes which is a sure sign I’m getting better!

Still not perfect stuffy and stuff. But ok.

Will be taking Jess to school for our take two of that test. Things better be ready this time!

Other than that not much else going on. Doing a lot of thinking and research about long term plans for Jess and I. Thank you to the people who have talked with me and will support whatever goes on. Like any huge life transition, especially a planned one it will take time and lots of back and forth and who knows what the outcome will be. The last planned transition was going to Chicago. I don’t consider coming to Albany planned though I did decide myself and wouldn’t let them take me back to Friedman.

In any case am looking forward to talking with Jonathan about things and getting his special brand of Jonathan research going. As he has so much to do by the time I keep reminding him to call people it will be closer to the time where we’re more ready to do visits and things like that.

I did confirm with my mom on the phone today that when I was at Friedman getting $90 a month I hardly asked for money. A huge part of this was way better food and snacks. Another was just having that much more money. I hate only $30 a month. The biggest issue with that in this whole thing is honestly dealing with the food day to day and my weird metabolism/ stomach. If I didn’t get so weak it wouldn’t matter. In college I skipped meals so often and often didn’t eat much at home when just not hungry. Now I can’t afford to not eat a good two meals a day. Two because breakfast is always good with my oatmeal which I also do have to buy!

So that’s a huge plus to going to Gateway having that much more money. Especially to maybe save to do things like visit family easier, if we could actually help pay for the flights that might help. Or go to another state if needed.

I like doing initial research on anything related to this subject as everyone knows! So this is actually good for me whether anything comes out of it or not.

As I said in a past blog if anyone is from MA, or actually lives at Gateway, or getting mental health services in Peoria I would really like feedback.

Will be interesting to go out tomorrow with my cold still there. Hopefully morning nap will refresh me enough to be doing ok going out there and maybe fresh air will help.

Book Review: No More Sad Goodbyes by Marilyn Reynolds

I just finished rereading a really good young adult novel by Marilyn Renyolds. She writes very sensitively about teens in crisis, at a fictional high school called Hamilton High in CA.

In this book seventeen year old Autumn Grant starts out with a pretty good life. She has a small but very close family. Her mom died of an unknown illness when she was little. She lives with her Dad and Gramma. Her Gramma is blind yay! And has a guide dog named Casper. Throughout the book small comments are made about how she cooks and gardens and shops with her Braille visa card Yay accurate representation!

Anyway. She has a life long best friend and excels at volleyball.

There’s one not so small problem. She’s pregnant. Two or so months at the start of a book. After a one time thing with her best friend’s crush and other life long friend, turned I really want to go out with you please have sex with me on my birthday guy!

She is keeping quiet because she’s already made the decision to have an abortion. She has the appointment and everything. She waves goodbye to her family on their way to her next volleyball game like a normal Saturday.

After the game, which they win, her coach Niki has devastating news. Her family including Casper were killed instantly in a car accident.

Autumn is completely shocked and numb. Niki brings her to her house for the night after the Sherif wants to put her in foster care right away. Nike lives with her partner Penny and cat elvis. Autumn finds out in the morning that she had been staying in what would have been their baby’s room when the adoption failed. She’s sad for this but obviously has bigger issues to be occupied with.

When she goes to go through and sort out her family’s stuff, what was on them at the accident she dissociates. For a long time. She can remember being in the police station with who she was with and then she was at the lunch table with her friends and someone said Hey! Really loud and somehow that snapped her out of it.

Apparently she’d been functioning on auto piolot for about six weeks. She could talk and move and like go through the motions but she had no memory of the funeral, living at her friend Dani’s house, school ETC.

When she could think again she realized that she’d missed the appointment for the abortion. She made another one for two weeks away. She was still wishfully hoping that no one would know what was going on. The baby was kicking harder by this point and a couple times it kicked in front of people and she worried they noticed. She hated keeping secrets from her friend and friend’s family as they’d been so good to her. She knew particularly her friend’s mom who is super religious, would not understand.

Not surprisingly one day her mom found out seeing Autumn in the shower. She was shocked. First wanting her to go to a home for unwed Moms. Whenshe heard Autumn wasn’t “having the baby” she was even more shocked and upset. It was really hard to watch this poor girl having gone through so much trauma being sent to The County Home way out in down town wherever.

This was like a big group home. Like for people who had nowhere else to go basically. Kinda reminded me of a psych hospital as they strip searched you, you had to have a shower and a lice check, and all your things were locked up. You could have no personal belongings. Not even your own shoes, Autumn pointed out that hers fit and the ones they gave her didn’t!

She was checked over by the nurse and social worker. She opened up to the social worker Ms. Fenton and the whole story came out. She said the numbing loss of time was a natural reaction to that amount of trauma for some people. She went to the doctors with the nurse that day and found out that it was too late for an abortion.

She didn’t know what to do with this news at first and was just numb by the new experience of being in this not home. Though she was on the honor roll at her old high school, she had to have testing like from scratch. I would not want that stress on top of everything else! I couldn’t handle a math test with all that going on.

The daily routine was hard for her to adjust to. She was with girls who had been in and out of care and who had mental illness. Her roommate got aggressive often yelling at people throwing things, up all night with flashbacks that came out as aggression. Another girl that Autumn befriended had been in and out of care. Had been there like seven times. At six was her first time and it was the first time she had food and clean clothes and people who cared. It really made an impact on Autumn to see this.

She had group therapy, greif group, and individual meetings with the psychologist. She wasn’t too impressed with the psychologist who she said was like a psychologist in some book she was reading that asked questions instead of just saying what they meant.

She started going to a program for teen moms. This was hard too as she saw other girls excited about their babies. Well not excited I guess. But okish, wanting their babies. They’d made the decision to keep them whatever the difficult circumstances. I think one girl was kicked out and living with her BFS parents or something.

Autumn felt so isolated at the program in this regard. A few weeks of this and she finally came up with a plan. One of her father’s values is “being part of the solution not the problem.” One thing she could remember from before was how devastated Niki’s partner Penny was the day she came out of the old not baby’s room. She knew how to make this situation better. She’d give them her baby.

The ups and downs of that decision were intense. And I won’t give it all away. But I think it dealt with the issue well. Especially around gay/ les bian relationships/ adoption and that struggle. It also showed how a birthmom can have somewhat of a change of heart after birth, she had initially written no contact in the forms before having the baby. And changed some things once seeing her.

Autumn Niki and Penny became like a family. She was able to reconnect with her best friend. (the mom still believed she was all kinds of trouble against God or whatever I think Autumn was right when she said she didn’t think Jesus would kick anyone out.)

She was able to work with Guide dogs for awhile and then go off to college. She kept in touch with her baby and the family. This was an emotional and complex story that covered some really important and difficult topics.

hate having a cold!

Ugh have a cold. Hate it. I think Krissy gave me her cold when we were skyping for my dad’s birthday! It’s probably all the sick people here at Albany. Jess did have a little cold so I’ll blame her. Anyway have just rested and read on my braillenote another book to review.

I hate feeling sniffly and sick. Hoping I feel better soon especially before we have to drag ourselves out to Jess’s college on Tuesday!

Book Review: Taken by Rosie Lewis

I just finished Rosie Lewis’s new book Taken.

I really liked this book. It’s different from her other books and stories because it directly affects her family.

Rosie is given a newborn baby Meghan to foster. She had a rough beginning as she was born with neonatal Abstinence syndrome, NAS (haven’t heard that term in the US but basically drug withdrawals). She also had a cleft lip. She was in a special care unit, what would probably be called the NICU here, for a couple weeks and Rosie came every day to learn to feed and take care of her.

For the first few months of her life things were very hard for her. She could not hold down most of what she was fed and feeding was very difficult with her lip how it was. She cried and screamed in pain from the withdrawals. She was only somewhat quiet when she was given methadone, as an addict would be given! I didn’t know they did that for addicted newborns but it does make sense. Sad.

Slowly she got through her withdrawals. And pretty quickly her curious,playful and loving personality started to show.

Meanwhile there was a LAC review, to look into Meghan’s needs long term. Her birth mom, Christina would not be allowed to keep her baby that was clear from the beginning. Everyone was leaning towards adoption. Meghan’s social worker was Peggy, Zadie’s social worker in Betrayed. She was a no nonsense woman, physically compromised by her weight (was out of breath a lot) but a ferece advocate for the kids she worked with. She also handled Christina’s mood swings, and bluster well that hid the vulnerability of her and her situation.

To her utter surprise, on meeting Christina Rosie found something indearing about her. I guess just being a mom and imagining having to give up her kids at birth. She still hated what Christina had done to Meghan but in her heart she felt connected to her.

Meghan’s birth father and grandparents were ruled out. Peggy made a very insensitive comment, when Meghan tested with some hearing loss. That was something like, “adopters will run a mile if they know a child has a disability.” Sad that that’s the attitude. It turns out after her cleft repair she only had very mild hearing loss and it wasn’t an issue.

A little while later Peggy suggested that Rosie might want to apply to adopt Meghan. I found it interesting that she was the one to suggest this. Yes Rosie and her family knew that they’d feel great pain at letting her go but knowing they had given her a solid start was the important thing. This was the first book I’ve read dealing with a foster to adopt placement. With Cathy Glass, Lucy became a long term foster child of Cathy, and the adoption was something that came later and more gradually and something Lucy asked for.

Rosie was surprised by the question and her first comment was that she was divorced and didn’t own her own home, though she’d been in her home for ten years. I was pretty surprised that these were her first concerns, and such barriers to adoption.

In any case Peggy fully supported her in the adoption. And so went the ups and downs of the family working to adopt. I won’t give away everything but a few things stand out for me.

First, how a change of social worker can change the trajectory of the whole case. The social services bias to placing a child with a family with money and respectable jobs in a nice area of town. That at one point became the focus more than anything else and I thought at times it was purely selfish of them, or I don’t know, so material. That that’s what their focus was, a two parent family with a lot of money.

Even Christina in her angry swearing way was on Rosie’s side when it was decided at one point that she be moved to this rich couple.

The ups and downs were softened by Meghan’s developing personality. It’s clear she had and likely could continue to have emotional difficulties. Rosie talked about meltdowns when Meghan got frustrated that seemed more out of her control than regular tantrums and likely her brain would just get on overload. She was also very sensitive to illness. And am sure the legacy of being born drug addicted would always stay with her.

Though the ending was happy, the book throws up a lot of questions about adoption, the system as far as how foster carers are able or unable to adopt. The idea of using an agency carer versus a local authority one, apparently the latter costs less money, and other issues.

I highly recommend this book and am interested about how foster to adopt happens in the US and other countries. I also know that the prognosis for drug addicted newborns isn’t often as good as it was for Meghan. People who have kids that are more affected might feel like the story doesn’t represent the experience of raising a child with these needs. But every child and situation is different. It also focuses on the emotional toll of fostering newborns, and how hard it must be for foster parents to let go and how the change in caregivers affects the child’s attachment to future adults I.E adopted parents or other foster parents.

Would love people’s thoughts on the book.

long day wasted trip out

So today was kinda long and disappointing. Jess had a test to take at her school. Don’t know if it’s due to being Friday but things got all scfrewed up. The person helping with the online tests couldn’t get in for her to take it. The program was saying the time for the test was expired even though she’d written her teacher who agreed she could take it that day. The teacher has no voicemail so she and testing center woman e-mailed multiple times. No luck.

I felt soo bad for Jess to come out there thinking she’d get it done and now to have this happen and add more stress.

On a practical level we sadly wasted a paratransit trip out.

The good news we did get some fresh air and time in a quiet smoke free environment. And we’re both relaxing now. I was happy with how well she took the disappointment. I’ll still worry about her though.

Would you risk your stable life and take a chance on a new one?

As everyone in my life knows I have mixed feelings about Albany Care. A huge part of the time I love it. It totally saved my life! I have one of the best therapists I’ve ever had! I’ve found an amazing combination of meds for me. I met a best friend/ older sister for life! I’ve also connected with some other amazing people. My deaf friend, who will always be in my heart even if we never see each other again. And others here, have opened up my compassion and ability to be around others who have vastly different mental health issues to mine.

I’ve learned a lot about building relationships with different staff members as I’ve had so many and honed a solid understanding about what works for me.

In spite of the chaos some days, the amount of people and other things (see my post ten things I hate about Albany!) I love the place more than hate it. Even when I’m annoyed and feel like I just want to leave I still like the place as I know it’s brought such a sense of safety and stability to my life. Living in a place like this has been something that I knew deep down I needed by the end of college. At that time I had no hospitalizations, suicide attempts, no one took my SI seriously ETC

So finding this place was bound to happen which is why I grabbed hard on to the chance when it came.

I’m doing so well now. As I said, meds, therapy, good relationships everything.

We all daydream about wanting more for our lives. There are things in the Chicago Area and likely IL in particular that I just can’t do as there aren’t the oppurtunities. For example, I’m still shocked about how Chicago/ IL has so few hotlines. I’m a huge fan about that form of volunteering as my three internships were hotline based. Also there isn’t a lot of peer support that I can find in the area.

When I went to a young adult resource center towards the end of my time in MA (was a real sanity saver as I didn’t have to be at my parents house!) the peer specialist told me the first day she met me that I would make a good peer specialist! That’s always stuck with me.

There are just great groups back in MA that they don’t have here. The DBSA, depression bipolar support alliance is way better for example.

There’s also a chance I could find a stronger, friendlier deaf/ deafblind community and make those connections. In short I feel I could expand the things that are important to me in my life and the only way seems to be leaving the state. I’ve always loved MA as I grew up there. The culture around mental healthcare is different, expressive arts therapy is hugely emphasized for example.

I’ve obviously talked about all this a million times before. I think it was an idea that took root in 2015 and at the time I was afraid of it. Now it’s something always in the back of my head.

However, I could totally be wrong about all this. First of all I know Jess and I both would need a solid foundation of services to do well. With Medicaid and SSI only, we’d need: Case management, outpatient therapy, psychiatrist. Likely a place to go for day treatment to provide structure at first. Either group home, shared living or high support in our own place especially to start with. We’re asking for things not to work out without these things.

When I was in MA I was told that there was no way I could get department of mental health funding. Basically pays for the services other agencies provide as cited above. At the time I had no hospitalizations, no severe issues ETC just the feeling that I needed that level of care.

Now I’ve basically been under IL department of mental health for three years and had several hospitalizations. As has Jess. It could be wishful thinking but I would think this would somehow influence their thoughts on the need for such services. On the housing front at least, living with my family for any length of time beyond like a few months or less is out of the question. Suburbia, no understanding of mental illness, doesn’t think I have it doesn’t believe in meds. Like one counseling center in the whole town.

And both our histories, preferences and what works for us it’s clear we would need residential, or in home support as neither of us has done anything close to well otherwise.

Ma folks say that DMH often is such a lost cause as trying to get services is like almost imposible. And the majority of services, even in home supports, and outpatient are funded through that department.

I guess the core question for me to consider again and again is: Is it worth it/ practical/ a good choice to consciously leave my current life of inarguably stable mental health with everything I need to do well, in order to try and find something new that might expand my life. It also just as well might be the worst choice ever. I could not live with putting our stability on the line, things falling apart and no way out, back to the place we were in with the constant supports we have here.

Jess proposed a step down solution. We’ve been exploring gateway supportive living. Where they accept all disabilities, except mental illness! So all our mental health needs would have to be handled ourselves. However they do housekeeping meals, activities ETC and we get three times the amount of money per month than here. She said it would be a first step to see how well we do in a non mental health environment that still provides daily support. During this time assuming things go well we’d be saving money in order to visit MA or perhaps another state.

I totally agree with this plan. And it would be easy enough to get back to Albany or another SMHRF if needed. I really really wish all states had SMHRFS which is a huge advocacy project I’m going to add to the list of projects. These places, the private pay ones and our type, I don’t consider institutions. The staff really do care and do the best they can, admit when they make mistakes (most of the time) and are totally for and wanting people to move on if they’re ready or stay if they’re not. These places have such a bad reputation and stigma even amoung mental health users and professionals. I feel that this could be changed with a more peer driven approach in the residential community, which is already starting to happen. And plans to scale down and specialize from a nursing home model to mental health only are slowly under way.

The question I asked about taking this risk is a very sensitive one. Please respond with empathy and nonjudgment. People who truly know what I’m facing are those with mental illness and I’d also say additional disabilities. They’d be most connected on a deep level to realistic options knowing me.

I think it’s a question many face and have known friends who have moved states and what that’s like. Please keep in mind that this is ongoing dialogue with myself and others, ongoing research and something I go back and forth on. So I’ll absolutely send conflicting messages about wanting to leave sometimes, and other times wanting nothing more than to stay for ever and that’s normal I think.

awesome day: Jess back in our room and good anna session about nutrition posible autistic traits, researching MA mental health

I had a great surprise after morning nap. Jess and her caseworker coming in with all her stuff saying she[‘s home for good!

As unexpected as it had been that they were gonna keep her for months. I guess she’s shown staff to the best of her ability that she can be ok in this room. Hoping for this to continue as she now has a good therapist it seems like.

Anna session was great.

We talked about food and about my turning white,/ being weak and blood sugar and stuff. She said she had the same problem and changed her diet.

I did say Edith and I went over this. Talked about the rasens and peanuts and how Jess had to throw out a bunch. She suggested smaller size stuff granola bars, and stuff like that.

I guess I’ll do some research on this and try again with her support. I said how I so wished that she could run a nutrition group as she seems so eager and passionate about the subject. She also said she’d love to have a greenhouse and do some garden therapy.

I mentioned sensory rooms and she said she’d done that with great results with the autistic kids she previously worked with.

I said how a few people thought I might be on the spectrum but couldn’t articulate/ remember what they had to say. I do have the atypical autism thing and I have a lot of them but certainly not all. She as others do, blame the stimming on my being blind.

She said everyone’s a little autistic.

Not sure how I feel about that statement. I know it would be quite hurtful to someone who is autistic and clear on it.

Don’t know if there’s anything to be gained from continuing a conversation on the subject. With her or any professionals or trying to get diagnosed.

Something I keep going back to.

Oh also did some work with contacting mental health people in MA. Really want to get a sense of the services available to Jess and I should we want to move.

Had bad luck there. I totally didn’t realize til later that contacting them on FB was not a good idea due to privacy.

The most interesting person I spoke with was a mental health advocate. Says they help with people knowing their rights, working with families and children and basically anyone to help navigate the crazy mental health system. Well she charges. Which makes sense. But her rates: $150for the first half hour. 400 for next three hours and 150 for every hour after that.

You can see a therapist for way cheaper. She’s working with people who likely are in real financial loss. Her services could very well be more expensive than what she’s helping them connect to.

I’m sure she has a good reason for her prices but it was still a shock.

Finally I did stumble on some peer organizations that might be more helpful.

Well talk to you later. Very good day for me.

Great day Dad birthday skype call

So today was a good Wednesday.

It is my Dad’s birthday so happy birthday yay!

After some technical difficulties on my end we got to skype for a good forty minutes or so! Krissy was at school and so we skyped from Ma Maine and IL. Cool to talk over three states at once! At first I was confused and thought Krissy was home with them. She has a horrible cold though.

We had a great time. Mom was thrilled to see “her two girls together” and took a few pictures.

Krissy signed with me, I guess really in sync LOL happy birthday and she made me fingerspell it LOL!

So yeah I have a signing buddy in her.

My dad cut cake and cut two pieces for us both which he said he would eat for us! We sang happy birthday and I pretended to blow out the candles LOL!

Other than that. Was productive around writing people around audio book things. Am still working to connect with anything MA mental health consumer related. So we’ll see on that.

Lastly shout out to my big sister! Am very proud of her as she had her first therapy session today and liked it! Yay for the first step to healing in therapy.

Other than that not much else to report.