Brave Choices

Posted on by Astrid

A few weeks ago, I was in the mood for writing but didn’t know what about. I downloaded Google Keep on both my PC and iPhone and just started writing based on a prompt I saw on the See Jane Write website. I had never heard of this site. The prompts for the month of November were all two words long. The prompt I used was “brave choices”.

I doubt I’ve ever made a brave choice. Most of my major life choices were made out of fear or avoidance rather than courage. Either that or they were really other people’s choices I didn’t rebel against, or not well enough.

For example, my choice to live independently, wasn’t really my choice. I was pressured by my parents into saying this was my goal after completing independence training and, once everyone except for my parents agreed it wasn’t a realistic outcome, the pressure had increased to the point of being unavoidable.

Similarly, my choice to live with my wife, wasn’t really my choice either. She wanted it, but hadn’t realized all the complcating factors, like my substantial care needs. She had good intentions, mind you, thinking our love would conquer anything. It didn’t. Thankfully, I was able to make the choice to go into the care facility in Raalte before our relationship suffered irreparable damage.

If there’s one choice I made in my life that could be considered brave, it was this choice. My parents and former professionals would likely say this choice was made out of fear too. They might have been right. Maybe, if I’d been truly brave, I’d have been able to organize my own care whilst living with my wife. Then again, now that we live separately, neither of us wants to live together ever again.

I still wonder whether I could improve my life if I didn’t make decisions out of fear or avoidance anymore. I mean, the reason I rarely try out new skills of independence, is fear, namely the fear that my staff will always expect me to possess an ability I’ve shown once, as well as other related or even unrelated abilities. This fear isn’t unfounded, but it’s holding me back more than it should.

Hope for My Home #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “starts with ‘ho’”. The first word that came to mind for me was “home”. In less than two weeks, I’ll be at my current care home two years. I remember celebrating the two-year mark in Raalte, almost fully confident that I’d stay there for many more years. In fact, at my care plan review at the end of September (I moved into the care home in Raalte in September too), I said I was 95% sure that I wanted to stay there. “Make it 98%, please,” said my home’s manager. A year later, I had moved to the intensive support home and, as it turned out, the higher-ups in Raalte didn’t want me back.

Another word that came to mind is “hope”. We all could use a little hope, I think. I want to start by saying that, if I celebrate my two-year stay at this home, it doesn’t mean I’ve jinxed (a word I only recently learned of) it and I’ll be voluntarily kicked out of here in less than a year, like in Raalte. I still hope there’s room for improvement in my care and, rather than being shoved around, I’ll finally be able to feel home.

I do admit I have good days. Today, I baked a Biscoff blondie with my staff. That was fun! I just so wish that my life were actually relatively good rather than my having to hope everyday that this day will not suck. Not that a day when I don’t bake sucks, of course. Life is more than Biscoff blondies. But when all I can tell my spouse on the phone that I’ve done today is walk and play dice games, it’s boring. And that’s while my life could be so much less boring if I were able to contribute. And I don’t just mean cooking, baking and crafting. I mean the less interesting tasks of daily life too. I feel accomplished when I’ve helped with some chores around the home. I hope that when, at some point, my new day schedule is created, life’ll be a bit more fulfilling.

March Memories

Posted on by Astrid

Hi all! Can you believe we’re already halfway through March? I honestly feel that time flies. Today, I want to share some random memories from Marches (is that a word?) gone by.

First, a year ago, I had just recovered from second-degree burns that I sustained in a crisis. Looking back, my life is much better now than it was a year ago, when we were in the midst of a weird idea from the staff that said I had to compensate for every minute I needed support outside of my designated one-on-one hours because of distress. I sort of understand the reasoning, because, at the end of February, I had shared with my behavior specialist and some therapists that, in an ideal world, I’d be able to rely on staff all the time. What I didn’t realize at the time, thanks to all the words about “unsupported time” in my day schedule, is that this is basically already the situation in 24-hour care. Of course, I can’t always expect a staff to show up in no time when I need one, but it isn’t like I’m ever truly supposed to be self-reliant. That’s until that crazy idea about compensating came to be, because, as one of my staff said it, my “unsupported time” was supposedly my structure. Let’s just say I disagree and am so happy that, after a month, the system was abandoned at the end of March again. Now, it’s actually in my day schedule that I can rely on the staff for support when in distress during my times of doing my activities by myself.

Two years ago, I finally had a meeting to discuss my leaving the intensive support home. I’m so very happy I insisted. I remember the intensive support home’s behavior specialist was a bit critical, because, well, I apparently hadn’t left the care facility in Raalte in 2022 completely voluntarily. As it turned out, some staff had been more happy that I’d finally gone than they had admitted. This is somewhat understandable, given that all other clients there had severe to profound intellectual disability and no or minimal challenging behavior.

I can’t believe I’ve been at my current home for eighteen months already. As I share these two snippets, one from 2024 and the other from 2023, I am intensely grateful. I am still struggling at times, but then again I was even at the best of times in Raalte.

Sharing this post with RDP, for which the prompt today is “March”.

Abandonment Wounds: What Will Happen If I Can No Longer Mask?

Posted on by Astrid

I’ve been struggling with attachment issues a lot lately. Not related to a specific person this time. I mean, yes, like I said on Wednesday, four of my “favorites” among the staff are either on leave or will be leaving (be it temporarily or permanetly) soon. That’s not the problem, since I’ve learned the hard way to expand my list of “favorites” when necessary. It’s in my best interest too to avoid a situation like the one with my assigned staff in Raalte, who was leaving and left me with just two other trusted staff.

The issue I’ve been dealing with lately, is much more existential: the knowledge that, if I’m truly myself, I’m unacceptable. Not because I’m some kind of criminal. I’m not. Rather, I’m an outcast. And while I won’t be in the prison system for that, being shoved around care home after care home while not having family to advocate for me, will be equally horrid.

I have been struggling with memories of the circumstances surrounding that assigned staff leaving. A few months before she left, I sent her a rather dramatic E-mail about how no-one will be in my life forever. Well, my spouse says we’ll always be in each other’s life, but truthfully we can’t know that. Besides, when we lived together, there were just a little too many situations in which my spouse (understandably) was disappointed in me that are however things I couldn’t help. For clarity’s sake: I don’t blame my spouse, but maybe with my being multiply-disabled, I’m not suited for “traditional” long-term relationships. Ha, now I’m reminded that my spouse often reminds me that I said when we were choosing to be a couple, that I didn’t want a traditional relationship.

Of course, the reason I’m undesirable by society’s standards isn’t my fault. Like, I can’t help being disabled. But just because it isn’t something I choose, doesn’t make it any less real or hurtful. In fact, it hurts more because I can’t choose not to be me.

I mean, I’ve masked more or less successfully for many years. Mostly less successfully, but my parents prevented me from landing in the care system at a much earlier age than I did by claiming the police and other people who thought I was disturbed, were just stupid. They were masters at manipulating the system. I am not.

Back to my assigned staff in Raalte. She was the first to take my wish to leave seriously. I assume she genuinely felt that the intensive support home could better serve me than the care facility, but I also assume she had a team and a manager to deal with and it remains a fact that some of her coworkers couldn’t cope with my behavior. Which was, for the record, much less challenging than it is now.

It genuinely scares me to think of what will happen if (when?) I can no longer mask at all. There was this news feature sometime in 1997 or 1998 about a girl, aged about sixteen, who was too intelligent for intellectual disability services but who still couldn’t cope in adolescent mental health services and was, as a result, restrained long-term. After her family sought media attention, she was transferred to a treatment center for youth with mild intellectual disability and severe challenging behavior. I don’t know what became of her.

Last week, when I had several severe outbursts related to my most recent frustration, I begged my support coordinator to ask the behavior specialist to involve the Center for Consultation and Expertise (CCE) again. I really want to get the ball rolling on getting them involved before it’s too late and I’m being kicked out again, like the last time they were involved in 2018. In this sense, a consultation might help more this time, because at this point, as far as I know, staff aren’t yet so much at their wit’s end that they see the situation as unresolvable. But I’m scared of what will happen if they do get to this point, like apparently some staff in Raalte were.

A Recent Frustration Related to My Care

Posted on by Astrid

Hi everyone. I haven’t blogged in over a week because I’ve been struggling once again. Honestly, I can see why judging from my experience over the past 2 1/2 years, people would say I’m always struggling anyway. The thing is, there are and there definitely were times I am or was struggling less. Besides, to say that this is just the way I am, is blaming me for the system not meeting my needs. And we all know that the system is broken and this is a reality, but I’m honestly getting frustrated with how little recognition I get for my attempts at coping with this reality and how much blame I get when I fail at doing so.

Now on to why I’m struggling again. I mentioned about a month ago that I would no longer be assigned unfamiliar temp workers. This is a definite positive. However, with this home having twenty residents, many of whom with high support needs, the pool of so-called familiar staff consists of at least thirty people. That isn’t the problem: I am fine with all thirty coming into my room to do activities with me, just like I’ve always been fine with the occasional unfamiliar temp worker. The problem is that all thirty so-called familiar staff are supposed to be assigned to me equally often and I’m not allowed to have a preference. The reason is the idea that I’ll add more people to my trusted circle if they’re required to be assigned to me more often.

I can see their point, in particular because four out of eight staff who I consider part of my trusted circle now, are either on sick leave or leaving soon, be it temporarily (on maternity leave) or permanently. I can see why one would like to avoid a situation like with my assigned staff in Raalte, who left about two months before I did and who at the time was one out of only three staff I fully trusted. Then again, I’m never going to have a circle of thirty, just like most people don’t have thirty close friends. And that’s what this whole “get to know everybody” thing feels like. I do try to expand my circle as needed, but I just can’t treat all staff the exact same unless they treat me the exact same and, in that case, we’d all be losing sight of each other’s individuality.

Besides, the staff don’t follow their own rules when it suits them. For example, it’s a rule that I’ll see one staff for my morning activity and lunchtime, but they’ve been switching that around when they felt like it, yet telling me (and each other) of the rule that they must switch at other times. In other words, the staff require me to deal with a minimum of six switches of staff per day, but when it suits them, this can be increased and yet it can’t be decreased. That’s while I made it clear in the document detailing my care needs last summer that I don’t do well with staff switches. Yet they blame me for the agreements we made back then not working, even though they didn’t follow through on most of them. Most notably, they’d told me they’d try to have a trusted staff assigned to me most days for at least part of the day and that just wasn’t happening. In fact, eight out of ten times at least, the staff assigned to do nearly four hours of support with me, was a random, unfamiliar temp worker. I don’t blame myself for this not working out.

I’m sharing this post with the Writer’s Workshop for this week. It was a recent frustration, in that this rule (about required switching) hadn’t been adhered to as strictly as it’s now until last week. I’ve also had a lot of discussions about it with my support coordinator this past week. I’m having a care plan review next week and am planning to raise this issue both specifically and as an example of a general trend towards blaming me for a broken system and mistrust towards me. After all, staff are claiming I would only want my “favorites” assigned to me if they didn’t require staff switches as often as they do now. Let me just say this wasn’t even the case in Raalte, where I did have a core team of at least somewhat trusted staff.

Crafting Lately (December 16, 2024)

Posted on by Astrid

Hi everyone. I finally feel as though I’m actually adjusting to life in this care home and feeling like this could maybe, hopefully be my home for a long time. This is a huge positive, as I’ve never felt this way in any place before except maybe for the care facility in Raalte in late 2021. As most of you know, that didn’t last. Please keep your fingers crossed that this feeling of finally belonging won’t be the beginning of the end this time around.

I had a good week last week. I am pretty much over whatever I was sick with all of the week before, probably a mild case of COVID. Since I no longer need to deal with unfamiliar temp workers and most of my staff last week know how to help me with my crafting, I’ve been able to be pretty creative.

I think I mentioned a few weeks ago that I’d been trying to craft a polymer clay unicorn for a new staff who’s as much into unicorns as I am. Unfortunately, one of the wings fell during the curing process and it hung in such a position that I could neither pull it off and craft a new one, nor be content with how it looked.

About a week ago, I was thankfully able to create a new unicorn. No wings this time, but I did use a tiny (5mm) heart cutter to create a little symbol for on the unicorn’s side.

This is my default unicorn in a sitting position. Its body and head are done in Premo white, while its mane, tail, ears and horn are done in Fimo Effect rose quartz. The tiny heart on its side is done in Premo 18k gold.

Then, I created a Christmas tree. This one I did by rolling out a snake then rolling it up into a coil that decreases in size as it goes up, thereby creating the tree effect. I used Fimo leaf green for the tree and Cernit Christmas red and Fimo Effect glitter gold for the baubles. I then added a spark in Fimo Effect glitter gold to the top.

In hindsight, I probably should’ve used Premo forest green and Premo 18k gold rather than the Fimo colors. However, I haven’t opened my Premo forest green yet, because we’re out of labeling tape and hence I cannot yet label the Ziploc bag I’ll put it into once opened. I also want to use an actual star for the top next time, but my star-shaped cutter hadn’t arrived yet.

Lastly, I decided to challenge myself with the unicorn design and create a unicorn-in-a-mug. That is, I’m lazy, so of course there’s no actual unicorn body hiding in that mug. I used Premo white for the mug and Cernit violet for the unicorn head. For the mane and horn, I used Fimo Effect metallic silver.

Originally, my staff had taken the photo of the unicorn from a slight angle, so the mug wasn’t fully visible and the thing looked like a unicorn in a white gown. I decided to ask another staff to take a new picture today.

I really loved being able to craft again. I’m so happy my creative juices are flowing.

Things I Appreciate About My Current Care Home and the Care I Get

Posted on by Astrid

Hi everyone. I tend to lean towards pessimism about life in general and my care is no exception. However, I do feel that there are definitely positives about my current care home and the care I get. This evening, I’m struggling a bit with mistrust. It’s sometimes hard to realize that my staff truly want the best for me, but they do. For this reason, I’m using this post as an opportunity to share the things I appreciate about my care home and the care I receive.

1. My room. When moving here from the intensive support home, I was cautioned that my living space would be much smaller here. It is, but this I see as a positive rather than a negative. I only have one room as opposed to a separate living room and bedroom, but this means I can actually find all my belongings in one place. My room is large enough for all my stuff and this was something I hadn’t expected.

2. The lawn/yard adjacent to my room. I have a little terrace that I have a table and two chairs on, as well as a large lawn. I share it with the resident in the room next door, but she doesn’t use it at all.

3. The fact that I could choose the color for one of my walls. Okay, they didn’t have my favorite color, lilac, but I can’t see it anyway and my spouse, who can, thinks pink is much better.

4. My one-on-one support. It’s not perfect, but it’s as good as can be given the current circumstances. I have enough time for day activities.

5. The fact that staff don’t push me to be more independent than I can be. I had a pretty bad experience with this at the intensive support home. For example, staff would ask me why I was independent enough to climb over my fence during an outburst but not independent enough to tell the shampoo and shower gel apart when showering. As if these two are in any way similar! And even if they were, I’m autistic and struggle massively with executive dysfunction, as well as my energy level varying significantly from day to day.

6. The fact that the female support coordinator makes most decisions for me rather than the male one even though she is actually responsible for the other side of the home. I have had some issues with the male one, who isn’t the most socially adept, and I’m so glad they were able to make a working arrangement.

7. The fact that I get female staff for my personal care all the time. I’ve always made it very clear that I don’t feel comfortable with males helping me with this. However, at the intensive support home, I was often told I either could accept the male staff or figure out a way to do said task independently, even when there were female staff available.

8. The fact that staff have agreed not to assign me unfamiliar temp workers unless absolutely necessary. At least, that’s how most staff have explained it to me. The male support coordinator corrected me when I said I’m happy that as a general rule I won’t get unfamiliar temp workers, so now I’m not sure whether I was too optimistic. It’s still early days too, but I’m trying to be grateful.

9. My two assigned staff. Both are female, one being in her sixties and quite experienced and the other a young student staff who however has a lot of knowledge. They both have my best interest in mind.

10. My signaling plan. A signaling plan is a plan that details the various phases of alertness or emotional stability in order for everyone to help the client prevent emotional outbursts or other states of over- or under-alertness. My support coordinator at the intensive support home had herself changed mine without my knowledge or consent. Thankfully, I was able to retrieve the one I had in Raalte and we were able to build a new plan based off that.

11. The fact that, if I have concerns, I can E-mail my assigned staff and support coordinator and they’ll take my concerns seriously.

12. The fact that my fellow clients are a lot less disruptive than the ones at the intensive support home. I still experience overload from the sounds my fellow residents make at times, but it’s manageable.

13. The fact that I won’t be kicked out of here. I’m not entirely convinced of this yet – no, scratch that, I’m not convinced of it at all -, but at least so far my staff are saying they’re happy I’m here.

I’m linking this post up with Thursday Thirteen.

Regrets

Posted on by Astrid

Hi everyone. Yesterday, Sadje asked in her Sunday Poser what regrets we have about not doing, being or having something in our life.

I could share that I regret not having finished college or not having lived independently longer, but I don’t. I mean, I know my “choice” to land in the psych ward caused me to be practically abandoned by my family of origin, but I wouldn’t have my spouse now if I hadn’t gotten myself admitted. In fact, I might not have been here to write about regrets, as I was actively suicidal at the time. You could argue that I wouldn’t have died anyway. Even if death weren’t the result of my continuing to muddle through, I would have more than likely caused irreversible damage to the relationships that matter. I honestly, after all, can’t believe my parents wouldn’t have abandoned me if I’d spiraled more seriously out of control. And I’m pretty sure, like I said, that my now spouse, whom I’d just met, wouldn’t have stuck by me then either.

This doesn’t mean there isn’t a voice in me that wishes I’d done some things differently. However, as long as I live, there’s always a moment to do things differently now. For instance, if I really wish I’d finished college, I could always enroll into an Open University program.

Likewise, I do sometimes wonder whether I could’ve been more independent if this or that about my life had been different. Then again, if I really want to be more independent, I can take steps, no matter how small, to achieve it. The proverbial deep end doesn’t work for me, since that was what I got when living independently and going to university. However, I can always take steps towards improving my life.

I, as many of you know, do regret having moved out of Raalte and into the intensive support home. That, now, I see as a lesson: I want to stay here at my current home, because even if it isn’t perfect, the grass isn’t greener anywhere else. Like one of my staff sometimes says, some places don’t even have grass.

I’m linking up with Senior Salon Pit Stop #338.

#WeekendCoffeeShare (August 10, 2024)

Posted on by Astrid

Hi everyone on this beautiful Saturday in August. I’m joining #WeekendCoffeeShare today. It’s nearly 10PM, so I’ve long had my last cup of coffee and my soft drink for the day. I, however, do have Kinder Country candy bars in my cupboard, as well as lots of other candy. I bet I could persuade the staff to open the cupboard for you, but I can’t persuade them to brew you a coffee. Water will have to do. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, I’d start by sharing about the weather. It’s mostly been quite warm with daytime temps in the mid to high 20s Celsius. We did get rain yesterday, but thankfully no thunderstorms. On Monday, the daytime high is supposed to be 32°C. I’m a warm weather person, but that’s too hot even for my liking.

If we were having coffee, I’d tell you I did a lot of walking over the past week. On four days out of the past seven, I got in over 100 exercise minutes according to my Apple Watch and I didn’t even go swimming this week, as the institution pool is closed now.

If we were having coffee, I would tell you that I’ve been struggling a lot lately. Part of the reason I’m showing it more might be the fact that I discontinued my morning dose of topiramate a little over a month ago, but it’s not (just) that which explains why I’m feeling like crap. After all, I’ve been feeling like crap for months. Make that years, honestly. I am realizing I never recovered from the blow to my self-esteem that was being more or less kicked out of the care home in Raalte. No, don’t interrupt that I wasn’t kicked out, since I know I literally wasn’t. However, when I realized the intensive support home was the nightmare it was and asked to be put on the waiting list to return (or actually return, since I asked before my room was filled up), I was told that some people had actually been glad that I’d left.

Why is this relevant now? Because, even though my current home is better than the intensive support home, I’m still feeling like I’m massively overloaded and my capabilities are massively overestimated when I’m struggling. This leads to staff not following my current support agreements, which even when followed to a T create just about barely manageable a care situation if even that when I’m feeling low (they’re okay when I’m feeling good). I know I said the same of my day schedule back at the intensive support home, but I only said so because my staff there had already decided I was a spoiled brat and wouldn’t stop complaining until I had full-time one-to-one. Which was almost correct before topiramate, but it wasn’t when I was on this medication. And it isn’t now either. After all, when I wished for near full-time one-on-one back in 2021, I didn’t realize its implications in care. I do now.

I realize I might need to go back on my full dose of topiramate (even though the evening dose is going to be discontinued next week too), but I don’t think it’s an excuse to keep everything else the exact same, since my needs weren’t being met before I discontinued this medication. In short, yes, the med might get me to shut up, or it might not, but either way something else needs to change too.

After many meltdowns, I finally wrote down my care needs in a document and E-mailed this to my assigned staff. I did water them down a little to make them manageable within the way my home operates, but not so much that I’d have every reason to still complain if the team decide to implement this. At the end of the document, I put in a brief summary of my care in Raalte (in early 2022, so when the team had already fallen apart) and asked for recognition of the improvements I’ve made since. I mean, I don’t seriously request to be moved now (I do blurt it out during meltdowns) and I wish I got half as suitable care as I got back then.

The support coordinator mostly making decisions about me, is on vacation now, but she’ll return on Tuesday. I hope I’ll have a meeting with her and the behavior specialist soon to discuss my needs.

If we were having coffee, lastly I’d share some positives of the day today. I realize this post was mostly negative, after all, but today was a pretty good day. Here are some reasons why:

  • My assigned staff was here this morning.

  • She brought me a cup of coffee right when waking me up.

  • Even though we were late finishing my morning routine, the staff coming for my morning activity came right on time.

  • I went for three walks today.

  • I had a waffle with forest fruit jelly, powdered sugar and whipped cream on it with my afternoon coffee. And a macaron in the morning. Sorry not sorry, dietitian.

  • I was able to ask the staff who did my afternoon activity with me, whether she’s leaving (which I thought because I’d seen her with a client from another home) and thankfully she said no. I am proud of myself for up front asking her rather than getting distressed.

Share Your World (May 13, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining Share Your World. It’s a lovely blog challenge on WordPress where bloggers answer four questions, with an optional gratitude section at the end. Here goes.

1. Have you ever lied about your age?
Not really purposefully lied, but my insiders/alters/parts (I most likely have a dissociative disorder) have different ages from my body age and they’ve sometimes been rather in your face with them, even though we rarely experience full-on amnesia and, as a result, usually know our body’s legal age on some level.

2. Is there any time in your life you would like to relive?
The year 2021 and the first half of 2022. Those were, all things considered, the happiest times of my life. I wish I could go back in time and make one different choice then too, which my regular readers will know: I’d travel back to April of 2022 and undo my decision to ask to move out of the care facility in Raalte.

3. Do you own any antiques?
Not at all.

4. Would you like to know some of the history of places you’ve visited?
Not sure. I did visit the institution museum a few weeks back and that was fun, but I don’t really care for historic buildings or anything.