Prologue: two weeks ago, it was decided that, for two weeks, I would not be allowed to attend my day activities center in the afternoons. The reason was three new clients would be joining us and that would mean there’d be less support for me – at least while they get used to the day center. This made me quite unquiet. I wrote about this for Five-Minute Friday last week too, struggling to write a long enough, contextual enough post to be search engine-friendly within five minutes. Then I saw that people did prologues and epilogues to their posts that apparently do not count towards your five minutes of wrting time. So I decided to do this too. Here is my actual piece.
Yesterday, my staff asked me if I’d been feeling calmer now that my day activities hours were cut. I didn’t respond initially. Later, I did, assuming she had said, not asked, that I was calmer now.
I told her I feel awful each afternoon. Of course, the group is quieter without me, so I could see where she’d be coming from if she wanted to keep me out of day activities longer. I didn’t assume she had my best interest in mind – or at least the manager, who decided on these matters, didn’t. I’m not intellectually disabled, so I’m not the day center’s primary target population. As such, if there’s a disruption in the group that involves me, I’m the one who is out.
Indeed, today, I was informed that my day activities hours will remain as they were for the past few weeks. It was all in my best interest, the staff tried to say. Well, agree to disagree.
Epilogue: I was quite distressed by this whole thing during the day. Then I remembered someone’s comment on my FMF post from last week, that God never closes a door without opening a window. On Thursday, I will have a meeting with my day activities and home support staff, my community psychiatric nurse and the local authority social consultant. I hope this meeting will yield some positive results.
Linking up with Five-Minute Friday again.
Last week, it was decided that, for a while, my day actvities hours will be cut. It was also suggested that my current day activities center, which caters primarily to people with intellectual disabilities, may not be the best fit for me. I’m not intellectually disabled, after all. I’m autistic, but if you’re of at least average intelligence, somehow that doesn’t count as a developmental disability.
I had to accept this, to surrender to the decision made for me. But I decided not to give up. I am okay with this being a temporary thing, but I don’t want to be shoved around like a cart. I’m a person, after all. I know I don’t fit neatly into one dsablity label box. I am both blind and autistic and have mental health issues.
Over the past week I alternated between fight and surrender. When surrendering, I was depressed and didn’t feel like there’d ever be a place for me. I even pushed my husband away, because I wasn’t sure I could choose between him and proper care. Now I know this is a false dilemma.
When in fight mode, I felt energized. I’ve been making phone calls, thinking up next steps. I have an appointment with my community psychiatric nurse on Monday to discuss how to proceed.
It doesn’t help this wasn’t the first time I fell between the cracks care-wise, but in a way, it does. I know how to navigate the system, after all, and I know not to surrender to a poor quality of life.
I am linking up this post with Five Minute Friday. The prompt this week is “surrender”.
When I saw this week’s Five-Minute Friday prompt on Saturday, I just had to participate. It is hard, because I usually take much longer to write my blog posts, so I kept delaying this post. Here is it. It’s a short one. The prompt is “Place”.
I have always longed for a place to belong. I don’t think I ever felt quite “at home” anywhere. I’m still getting used to that feeling now that I’m in fact home.
I mean, when I was first admitted to the mental hospital in 2007, I longed for a supported housing place to call my home, yet none could be found that suited me. My last psychologist at the institution said this was because I just wanted to remain institutionalized forever. There may be some truth to this, in that I fear independence and in some ways long to be taken care of.
However, another facotr is I feel out of place everywhere. The grass is always greener on the other side of the fence, so to speak.
I am trying to make myself at home now in our house, but I’m constantly worrying that this too will not last. Like, we might be moving to our own home someday withint he foreseeable future. I always said we’d buy the home we now live in from the housing corporation and
I’d still be living here in fifty years. I guess not. This is hard. I hate change and yet, I cannot settle anywhere.