So I had a productive day today.
I do like living at Albany. Despite the ups and downs and sometimes wishing I could move out, I know this is the best available option to ensure all my physical and emotional needs are met. I have a good life here compared to say Friedman where I’d have absolutely no psychiatric services or my parent’s house where I’d be totally crazy!
However I know that there are a few things that if they happened would make this place less useful to me. First is when the time comes for my PRC Edith to leave. Just having her on vacation for a week made me realize just how much she gets me and the other staff don’t.
I’m a really complex client to work with because I’m full of opposites. Intelligent and articulate at times, blinded by emotional intensity at others, wanting someone to engage with me and at other times pushing them away. Most of all wanting to be deeply heard and allowed to express myself in a way that many staff just aren’t used to and some don’t have the time for. It seems so many staff, when you say you’re anxious or depressed or something you get like two sentences in and they start telling you not to worry how to have a new perspective ETC. Basically I feel dismissing your feelings/ the issue before you even get to finish talking. This does not work for me especially if I don’t first feel deeply connected to the person (this applies to therapists too by the way)
Anyway I don’t get that with Edith. Jonathan has a saying when working with us. He says “some people like to control the madness, I like to let the madness run its course.” Now don’t think that he means that he just lets people go crazy or something. He doesn’t. He means that if someone is in a situation and provided they aren’t like a danger to anyone, he has the emotional resources within himself to be able to witness that however it is, and just let things play out. Wait the person out just see what they do, see how they interact with him/ the staff and the choices the person makes. Give them a chance to as he sometimes says “turn their day around.” Or ‘get back in control.” I feel this is a more compassionate and empowering approach.
Anyway so with no Edith I’ve gotten the let’s fix this issue mentality that I spoke of. And I have no patience or use for that. It’s like someone just totally on another wavelength than me, I just tune out. So if I’m not gonna be really heard then check ins aren’t helpful to me. Anyway long story short I am so so happy she’s coming back tomorrow!
So when she leaves provided I don’t connect with another awesome staff that follows the “let the madness run its course,” idea I really won’t get the help from staff.
Similarly, though this is less likely if Jonathan is not longer clinical director this place would be totally different and all the magic and open mindnedness would be gone. Despite his failings and ups and downs he’s made this place what it is. He makes sure the staff more or less are on the same path as him in how residents get responded to. He’s creative and down to earth and within his crazy time frames thinking he has all this time when he really is swamped, he does everything he can for every resident. He also genuinely respects each person even if they say they want to kill him or something similar which many actually do LOL!
Him leaving is less likely to happen any time soon. He’s been working here ten years he’ll probably be here for at least another ten.
In spite of this I’m always open to other options. Places that will provide the balance of care/ support and independence to meet all my needs.
Doing one of my endless searches I found this site.
The place sounds awesome. Because it seems to work with so many other disabilities besides and along with blindness. And it has so many services. Like it has a bunch of stuff for youth about job readiness independent living, totally independent living programs which I’m not ready for yet, even these adventure things like white water rafting, mountain climbing ETC that I doubt I’d ever! Just not an outdoors girl! I have plenty of anxiety without doing physically dangerous things thank you!
But anyway it just sounds really good. So I wrote them and explained my issue.
I also found this place also happens to be in the state of California.
This place also sounds great. Any place that says their specifically for the blind is so rare that I instantly have to write them. Though it says the only additional disabilities allowed are developmental, I told them about myself anyway. And about the extremely high importance of a living/ supportive environment being created, as these have been, for people who are blind and have psychiatric disabilities.
It continues to totally frustrate me that there seem to be places for anyone else who has a mental illness and an additional disability except for blindness. There’s enough developmental disability ones to cover the whole world, which makes sense. There’s a good amount of ones for the deaf. Love it! But why has no one in the whole country thought of something for the blind with mental illness. Particularly since all other additional disabilities have been thought of and had services created for?
All of my friends on my list have this issue. I don’t believe any of us with our various levels of needs, are in a living situation we are completely happy with. We’re all looking for a place that would provide a balance of supportive services individually planed and also independence and community.
The proposal Robert Kingett and I put up on my blog last week I feel is a good start to developing this idea.
I did find one more place. It’s actually in Massachusetts!
I’m not exactly clear on everything this offers. It seems that it’s based on units in apartment buildings. But you’re not totally by yourself you have another disabled roommate and also staff around much of the time. They have groups and I believe you get some supports I’m not sure how extensive. They also it says create housing oppurtunities.
For this reason I first of all wrote them about my own situation. Secondly Robert and I wrote them and attached the housing proposal. We said we’d be really grateful if someone could take at least a few minutes to just read it over and pass on to someone who might take some of the ideas and turn it into a practical program. Which us being twohighly ambitious not at all grounded in policy and such things, young adults, we just can’t do!
So I spent all morning researching and took my nap in the afternoon. I feel really good about today. I hope these resources can help others. I’ll tag the organizations and maybe others can comment on their usefulness and thoughts.