Some Glimmers of Hope

Posted on by Astrid

Hi everyone. It’s once again been a week and a half since I last posted. This week and a half hasn’t been boring at all. In fact, it’s been filled with events that triggered all kinds of emotions in me.

Last week Saturday and again on Monday, I had some very difficult conversations with my assigned staff. She turned out not to mean things too badly, but just got very frustrated with my trouble understanding non-literal speech. We also once again ran in circles about this home being very different from the home I come from and my being used to the old home and never getting it like that here. I know, I don’t expect things to go precisely the same as they went there, but there’s something between the way I was treated at my old home and the very harsh way I’m treated here.

These conversations got me so frustrated that I started thinking I may need to get an independent client supporter to help me find another home. After all, moving to another home within my current care agency, isn’t an option.

Then on Wednesday, a staff told me about her plans for getting day activities rolled out at this home. I’m not sure I can participate in all of them, but some I can take part in. This staff also assured me that my assigned staff is completely on my side.

This also became clear when I had the meeting with the mediator, my assigned staff, the behavior specialist and my mother-in-law yesterday. My assigned staff admitted that some (most, in my experience) of her coworkers treat me just like they treat everyone else at this home. Apparently the harsh approach is what the others need, but I don’t (unless I for instance insult a staff member, which only happens during a severe meltdown, 99% of which can be prevented with the right support). We agreed that my signaling plan (for preventing and averting crises) will be revised, but the behavior specialist assured me that for the most part it can stay the same. After all, she said I haven’t become a different person since moving here. That felt validating.

I positively told the people attending that, since implementing my new day schedule, things have significantly improved. I also told them I realized this may be all I can expect of the staff, so I am (trying to be) all happy when it goes smoothly. However, when it doesn’t go smoothly – for example, when the staff are frequently late for my assigned support times or leave me alone beyond my assigned alone times more than occasionally -, I’m not happy. It gets worse when the staff justify their tardiness or leaving me alone beyond my assigned alone times with some comment about my not having (full-time) one-on-one. Their reasoning is that, since my one-on-one isn’t full-time, I essentially don’t have one-on-one at all and can just expect staff to pop in whenever they please. Their terminology is a bit screwed (I think I explained it in a previous post) and it irks me beyond belief. I know I don’t have full-time one-on-one and I don’t expect it, but I do have the day schedule for a reason.

Both the behavior specialist and my assigned staff validated my need for the day schedule and for staff to stick to it. I said I understand that a severely challenging situation among my fellow clients could be a factor preventing this, but the behavior specialist said this shouldn’t happen more than a few times a week. Currently, it’s usually at least once a day (and I obviously don’t mean the times my staff is running like five to ten minutes late for my support). My assigned staff actually went so far as to say the extra staff is there primarily for me. She is going to clarify this and some other things in a basic info sheet on me that all staff can read when starting their shift with me.

Altogether, the meeting gave me some glimmers of hope. It remains to be seen whether the staff actually do something with what came out of it. I do still have my worries about my support coordinator overriding all this once she returns from her time off. Then again, I am pretty sure that, if the behavior specialist actually means what she said, my support coordinator can’t really do that.

Re(dis)covering My Creative Self

Posted on by Astrid

Today I crafted a dachshund out of polymer clay. I haven’t put it into the oven yet, as I still want to create other things before baking them all together. I sometimes feel a rush to create, create, create as who knows when this will end? In two weeks’ time, my support coordinator will be back and may decide to put my old day schedule back in place, in which I had only one tiny moment when I could possibly choose to work with clay, inbetween my morning coffee, a long walk and my lunch.

I am taking baby steps towards becoming my creative self again. This blog post is part of the process, as writing too is part of creativity. I notice my writing suffered significantly due to the chaos that was (and may become again) my support at my current care home. I know I’ll still have lots of time to write if my support coordinator puts my old day schedule back in place, but time isn’t the only factor. Inspiration is, too. And when all I do is try to survive from moment to moment – the staff’s terminology for the times they step in to support me -, I am not able to be creative at all.

I am really trying to look at these few weeks as an opportunity to re(dis)cover myself as a creative person, not just as a disturbed, manipulative yet oh so intelligent person, like most of the staff see me. My hope is that the staff who see me as primarily oh so intelligent yet disturbed and manipulative, will soon realize that, with the right support, not only will those “disturbed” behaviors lessen, but I will be able to show them my artistic side. If not, I am hoping that, soon enough, the staff who do get me will be able to convince my support coordinator and those who agree with her that this is not the right place for me. They have seen a glimpse into what I can be like when I am properly supported and I am cautiously optimistic that they can help me maintain this sense of myself, regardless of what happens when the support coordinator returns from her time off.

The Wednesday HodgePodge (November 23, 2022)

Posted on by Astrid

Hi everyone! I’m still struggling and neglecting my blog as a result. I fear this blog may be coming to an end someday within the not too distant future. Still, I hope not. Today, I’m participating in the Wednesday HodgePodge once again. Here goes.

1. Have you ever been on a cruise? If so where did you go and how did you like it? If not, do you have any desire to take a cruise someday?
No and I don’t think so. I’ve heard and read about just a little too many cruise ships sinking.

2. Tell us about your Thanksgiving plans…are you hosting? cooking? eating out? turkey or some other main? is it stuffing or dressing in your house? homemade cranberries or cranberries in a can? are pies on the dessert menu? what kind? what are your ‘must have’ sides? Tell us one thing you’re especially grateful for this year.
I’m not in the United States, so no Thanksgiving plans for me. I will be going to Lobith (where my husband lives) over the weekend though. We have been making plans for cooking a chicken and rice curry.

As for something I’m especially grateful for, I’d have to say the support of my mother-in-law. She sticks by me through the rough situation with my care despite being busy with her volunteer job herself.

3. If someone approaches you and asks for money do you give it to them? Do you drop money ‘in a tin cup’ that belongs to a person on the street? Do you have a specific charity you support during the holiday season and/or year round?
I don’t usually give money to people who ask. That includes people on the street. I used to give money to people on the street but stopped doing so after one of them got me to give him a larger than I would normally do amount of money because he had a pitiful but unbelievable according to my husband story. I don’t support any charities either, except for the member organizations I belong to, the Eye Association (for people with eye conditions) and CP Netherlands (for those affected by cerebral palsy).

4. Have you started decorating for Christmas? Is your tree up? Shopping done? Wrapped?
Not at all. I have a few Christmas decorations left over from last year (gave my tree away because it consumed huge amounts of batteries), but I haven’t put them up yet. We don’t do Christmas presents in my husband’s family and I won’t see mine at all. In fact, I can hardly believe it’s just one more month until Christmas.

5. Create your own acrostic using the word THANKS.
Thankful for a
Home to call my own
A husband who supports me
Necessities provided
Kind staff (sometimes) in the care home
Striving to make the best of this life

Of course, that “home to call my own” is in Lobith, by the way.

6. Insert your own random thought here.
I had quite a mixed day today. The morning shift was horrible, but the evening shift’s staff at least tried to make up for it, be it consciously or not.

TGIF: Walking and Crafting

Posted on by Astrid

Hi everyone on this third Friday of November. I’m joining Paula Light for TGIF. How is your day going? Mine’s almost over, as it is 9PM as I type this.

I had a pretty good day. Have had an okay week in general anyway. Finally got down to creating my first actual polymer clay piece here at the new care home, a flower. Creating this simple piece took me about 45 minutes yesterday, including gathering my supplies, watching the tutorial, conditioning the clay, etc. The piece nearly got ruined when the staff took it off the tile to transfer it to an oven-safe mat, but thankfully she was able to put it back together. I initially didn’t want to cure the clay because, once cured, if a piece is ugly beyond sanding/buffing, all you can do is throw it in the trash. However, after some thought, I decided I wanted something tangible to remember my first actual claying session in the new care home by.

As those who’ve seen my creations from back at the old care home, will know, this one can’t compare to those. However, I feel judging from the fact that I haven’t been actually working with clay in a long while, I did an okay job.

I also went on several walks this past week. Haven’t met my step goal, insofar as I have one – those who know the Apple Watch, know its movement goal is calorie-based, not step-based -, but I have been doing an okay job overall. My movement goal, by the way, is easy to reach. My exercise goal, not so much. My monthly goal for November on the Apple Watch is to reach my daily exercise goal 23 out of 30 days. I reached my monthly goals for September and October – different goals – with ease, but am struggling with this one, because walking and dancing are my only ways of exercising here now that I don’t have my elliptical anymore. I could cheat by starting some ball game workout when throwing a ball with my staff, but that’s not fair.

Overall, this week is going okay with respect to my care. A slightly modified version of the day schedule I mentioned last Saturday got shoved down my throat once again on Tuesday, but thankfully, most staff are willing to take it with a grain of salt (or a whole bucket of salt).

Unfortunately, the situation had to get worse over the weekend before it got slightly better and the slightly better (ie. an okay week this week) might just be chance. I won’t disclose details of the, in my opinion, unacceptable care I received over the weekend.

I talked to an independent mediator about my care situation today (this is not a secret, all staff know I did). I won’t disclose what exactly we discussed, but we’re hoping to resolve the difficult care situation as peacefully as possible.

Here’s hoping you’ll all have a good weekend.

#WeekendCoffeeShare (November 12, 2022)

Posted on by Astrid

Hi everyone. It’s once again been a while since I last wrote. Today, I’d like to write a post for #WeekendCoffeeShare. I drink more coffee here at the new care home than I used to and it’s not decaf in the evenings. That’s one thing I don’t mind, although I now realize the caffeine might be contributing to my poor sleep. Like I said a few times before, I’m struggling greatly otherwise too. Let me try to share a bit about this past week. Grab a cup of coffee, cappuccino (we have a milk frother here) or tea if you’d like one and let’s chat.

If we were having coffee, firstly I’d start out with the slightly positive: the weather. Although others – climate activists – would see this as a negative (and I understand why), I am so relieved we have relatively mild fall weather here. Daytime temperatures rose to a maximum of between 12 and 17°C over the past week and we didn’t get much rain.

If we were having coffee, then I’d share about the negatives, the list of which starts with my day schedule. I requested one because, otherwise, staff would give me one-on-one support whenever they so wished. However, as it turned out, the day schedule was so vague that staff could still interpret it however they wanted to.

For instance, some staff had gotten it in their heads that, between each activity, regardless of how long that activity took, they’d need to leave me alone for 30 minutes. I said sarcastically that I’d have to think of activities that lasted two hours then, but the last staff who openly told me this about the 30 minutes between each activity didn’t get my point and said an activity could take 30 minutes or whatever too. For clarity’s sake, I have unlearned to initiate activities that take longer than 30 minutes myself because I know staff will usually tell me they don’t have the time, even though I got 90 minutes of uninterrupted one-on-one from my old home’s staff each weekday morning and two hours each weekday afternoon.

Like you may guess, my day schedule is organized around activities, not timeframes. I understand this if you want to put into it specific activities such as “walking” and can’t be sure how long each walk will take. That’s why my old home had “supported activity” in my day schedule. However, it appears as though my staff here want to be able to decide on a daily basis how much one-on-one support to offer me and usually this is not dependent on my need for it, or even on my fellow residents’ daily care needs. Not that those should matter, since my one-on-one is *my* one-on-one, not my fellow residents’. However, it’s about 90% dependent on staff qualities: whether they smoke, whether they’d rather do stuff on their phone or chill out with coworkers than help clients, whether they can or want to set boundaries on my fellow residents’ demands, etc.

As a result of all this, I tore up my day schedule on Monday and life hasn’t been worse since.

If we were having coffee, lastly I’d share it’s my husband’s birthday today. He doesn’t celebrate it or so he told me, but he will be coming here for a visit tomorrow.

How have you been?

I Would Never (Or So I Thought): My Changing Perspective on My Care Needs #31Days2022

Posted on by Astrid

Hi everyone. Today’s optional prompt for #31Days2022 is “never”. I am immediately reminded of my shifting perspectives on my care needs over the 17+ years that I’ve been in the care system. Some things I thought I’d never accept, let alone want, in my care, are now things I wish for.

Most notably, in 2008, when I’d been in the psych hospital for about three months, I was being discussed among some autism know-it-alls. When asked what I wanted them to know before the meeting – since I wasn’t present at the meeting itself -, I wrote down that I wanted to be back in the community as much as possible as quickly as possible.

Out of the meeting came the recommendation that I be transferred to an autism treatment facility on psych institution grounds. I eventually ended up going to the orientation visit for the facility and the treatment coordinator and I mutually agreed it wouldn’t be the best place for me, precisely because of what it was: a treatment facility. I didn’t need further training in independence skills, after all, because, due to the combination of my disabilities, this wouldn’t be successful.

At first, I however misunderstood the meeting’s recommendations and thought they wanted me to go into the workhome, which is essentially a long-term living facility for autistics on the same institution grounds. And this is where I started to object in a way I wouldn’t now: I didn’t want to go live on institution grounds long-term.

For the first several years of my experience in the care system, I thought that institutionalization was an excuse for poor care. I am not saying it isn’t, because people who live in the community may need more support than those who live on sheltered institution grounds. In fact, when my current care facility was built in 2015, grouping several community-based care homes together, it was out of a need for budget cuts.

However, that wasn’t the reason I didn’t want to live on institution grounds. Indeed, the reason was the fact that I perceived myself as far more independent than I currently perceive myself. Not just that, but I had a misguided view of the amount of care I could receive.

You see, in 2007, I left an independence training home, where, during the week, the staff/client ratio was usually 2:7. Granted, there was no night shift, not even a sleeping one. I could deal with that at the time and, as a result, thought I could live in a community supported housing facility with staffing available even part of the day. Never mind that this usually meant a much lower staff/client ratio, so that within staffing hours, I would need to share my staff with a larger number of fellow residents.

I also rebelled against living on institution grounds because of my wish that more people could be integrated into society with the right support. Then again, I realized within the past several years that just because I and other people would wish for integration within society, doesn’t mean society wants us in it. For example, institution grounds are just much safer to walk on for people who aren’t safe in traffic, and that happens to include me. Just because I wish all drivers would stop their vehicles when they saw me, with or without my white cane, doesn’t mean they do. And it’s not like they can’t tell I’m disabled when I’m not using my white cane.

Also in 2008 or maybe it was 2009, I saw this documentary about a care agency in the southwest of the Netherlands which had completely done away with institution grounds in 1997, even for the most severely disabled clients. The presenter started out by saying that half (I think) of the clients in another province wanted to go back into institutions. The southwestern agency’s director started talking highly of his agency’s approach, where for instance they call their support workers “personal assistants” and where he at first claimed all clients are successfully integrated within the community. The presenter started showing examples of clients who were drowning, figuratively speaking, in the community. The bottom line of the documentary was that the director made up his mind and invited the presenter to come back a year later to hear his revised approach. I am pretty sure I wouldn’t believe the presenter, saying the clients had obviously not received the right amount of support. But if you need a “personal assistant” by your side all the time in the community while you can roam institution grounds freely by yourself, living in the community isn’t necessarily the obvious choice.

#WeekendCoffeeShare (September 3, 2022)

Posted on by Astrid

Hi all on this beautiful first Saturday of September. I for whatever reason keep typing “July” rather than “September”. Maybe that’s me wishful thinking. Anyway, here’s my post for this week’s #WeekendCoffeeShare. I just had my afternoon coffee, but the other clients are currently having theirs, so I bet there’s still some left for you. Let’s have a cup of coffee (or another drink, if you so prefer) and let’s catch up.

If we were having coffee, I’d start out by asking about your weather. Ours is beautiful. Today, we’re supposed to get daytime temps of up to 27°C. On Monday, the temperature’s even forecast to rise to 30°C. I guess my husband was wrong a few weeks ago when he predicted that it’d get only colder from that point on.

If we were having coffee, I’d tell you about all the physical activity I got in this past week. I got in a total of 330 exercise minutes according to my Apple Watch this week so far, exercise being anything at least the intensity of a brisk walk. I guess this means I can up my goal from 20 minutes to at least 30 a day. Then again, I badly want to reach it everyday.

If we were having coffee, I would use the rest of this post to share the details I promised you all in yesterday’s post about the potential new care home. You see, on Thursday at 2PM, the behavior specialist came by my room. The appt had already been planned or so I believe, because of the situation I shared a few weeks ago about an application having been put in for me to live at a senior citizens’ home for the visually impaired, a place I don’t consider suitable. I knew from my care facility’s manager that she understood this place doesn’t sound suitable indeed and also that she had heard that the people at the main institution for my current care agency, with whom I’d met at the end of July, were pretty enthusiastic about me. However, the manager didn’t expect to hear anything from them until next week.

Well, as it turned out, my behavior specialist had planned a meeting with the behavior specialist whom I’d met in July as soon as she could, which was last Thursday. It turns out I am number one on the waiting list for a home at the main institution. The home caters primarily to people with moderate to severe intellectual disability with a need for intensive support due to additional problems such as autism, attachment issues, etc. The level of intellectual disability is significantly less severe than in my current home, so I can actually make smalltalk with the other residents. The staff offer help with activities of daily living (personal care) where needed. Each resident has their own day program. This means that residents aren’t required to go to the day center by default. In fact, some of the residents go some of the time, others ride their bikes around institution grounds, while still others can’t leave the home unsupervised.

I told my husband about this home and he immediately replied that it sounds perfect. Well, I said, that isn’t possible, but it does sound pretty good indeed.

Of course, I am on the wait list, so there currently isn’t an available room, but the behavior specialist said they are working towards finding a new home for one of the current residents. She said it might go quickly but it might still take six months or so. Well, if you ask me, even if it’s going to take six months, that’s still super quickly. That’d honestly mean I’d have found a place within the year from saying I want to find a more suitable home.

I will get an extensive orientation, getting to look around at least twice before I decide whether I want to move to this home. I am both nervous and excited. Mostly quite excited though. I’d read up about this home before and wished I could live here and now my dream might come true.

How have you been?

Because I’d Had a Stroke…

Posted on by Astrid

I couldn’t possibly be autistic, my psychologist said, because I’d had a stroke as an infant and that somehow precluded a diagnosis of autism. Never mind that autism is genetic and said stroke supposedly didn’t change my genetic makeup to make me neurotypical. I, however, had to be diagnosed with acquired brain injury-related behavior change instead, but then again I couldn’t either, because I was too young when I sustained the stroke for my behavior to be considered as having changed either; after all, a six-week-old infant hardly shows any behaviors that would be considered significant in an adult. For this reason, I ended up with just some regular personality disorders, specifically dependent and borderline PD. Never mind that these have their onset in early adulthood and I’d shown symptoms since childhood. As it later turned out, my psychologist’s reason for changing my diagnosis had nothing to do with logic and everything with her wish to kick me out of care.

This post was written for the Six Sentence Story link-up, for which the prompt word is “stroke”. It isn’t completely factual, in the sense that, though my psychologist kept referring to what happened to me at six weeks of age as a stroke, it was actually a brain bleed. That doesn’t change the rest of the story though.

The Wednesday HodgePodge (May 25, 2022)

Posted on by Astrid

Hi everyone. How is it the last Wednesday of May already? I seriously can’t believe it. Anyway, I’m joining in with the Wednesday HoddgePodge again. Here goes.

1. It’s National Wine Day (May 25)…do you like wine? Red or white? Dry or sweet? Do you have a favorite? Have you ever been to California wine country? Or any other wine region? What’s a dish you make that calls for wine?
I can’t stand wine! One day, when one of our staff was retiring and had a little leaving party at my care home, somehow we had white and red wine (don’t ask me how we got it, as normally we aren’t allowed alcohol in the care home). Some staff convinced me to try a little of the white wine. I took a sip and blurted out: “Ew, this is gross.” Then they gave me the red wine. When I took another sip, I yelled: “Yuck, this is even worse!”

I don’t think I’ve ever been to any wine region. Not consciously at least and I don’t care to go there either.

2. What’s something you’ve whined about lately?
The staffing shortage in health care and particularly my care home. Literally half the team left within the past year or so and, this past Monday, the manager informed me that they may need to get temp workers to do my one-on-one shifts too rather than just the general shifts. I know rationally that the manager can’t help the staffing shortage, but emotionally, well, I feel rather overloaded.

3. Last time you were “wined and dined”? Tell us about it.
I honestly can’t remember. My husband and I haven’t been eating out since before COVID, I guess.

4. Three cheers for_____________________.
Care workers, of course. I know the workload is crazy. I can be a pain in the butt at times, but I do appreciate their work.

5. This will be the last Hodgepodge in the month of May. Somehow next Wednesday the calendar rolls into June. Before we go though, sum up your May in twelve words or less.
Eventful, an emotional rollercoaster ride.

6. Insert your own random thought here.
I have been busy with preparations for visiting my sister and her family so I can see my new niece. She was born last Thursday. As regular readers of this blog know, I created a sort of mobile for my baby niece. Here is the picture (I’m holding it in my hand because I had nothing to hang it onto).

I wanted to gift my sister something for her birthday (which was on May 13) too and saw she wanted a membership to a positive parenting website. I am positively surprised (no pun intended) that she’s interested in that approach, as it’s vastly different from our parents’. I didn’t end up buying the membership for her, but hope she does keep this mindset.

I also am happy to share that the handheld drill and drill bits I wanted for drilling holes in my polymer clay pieces for jumprings finally arrived. I had ordered them last Wednesday and the website said handling and shipping would take up to three business days. Apparently they took three business days before they started collecting my order. I need to drill the holes so that I can attach jumprings to pieces in order to make earrings. Since the gift I did buy for my sister, is a pair of earrings, I intend on making her another pair out of polymer clay just for fun.

I also intend on making one more unicorn, because my older niece also deserves a little present when her baby sister and mother both get something.

Making Up My Mind: Why I Want to Live in an Institution

Posted on by Astrid

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.