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.

Growing Up Emotionally

Posted on by Astrid

Today’s Ragtag Daily Prompt is “when I grow up”. I’m going to be forty next year, so by most standards, I’m considered to have “grown up”. Only by the model that includes life experiences such as working, buying a house, etc., I’m not necessarily truly an adult. After all, though my spouse and I own a house together, buying it was mostly done out of necessity so that I could go into long-term care. I’ve never worked, not even had a side job as a teen.

That being said, in many respects I’m still young at heart. I know everyone my age says so to be cool, but I don’t mean it in a positive way. Rather, I mean it to say that emotionally I’m very vulnerable. Like I shared when discussing emotional development as it relates to intellectual disability (and autism) in 2023, on many subscales of the emotional development assessment used here in the Netherlands, I’m considered an infant or toddler. That doesn’t mean I can’t grow.

When I grow emotionally, I’d like to become more regulated. My psychiatrist used to say that I’d likely experience less emotional dysregulation after age thirty. I’m not sure that’s true in my case. In fact, I’m pretty sure it’s not true. The frequency and severity of my meltdowns has increased, though the duration has lessened significantly. I no longer experience outbursts that last all day. That, I mostly attribute to my staff’s proactive attitude.

I’d also like to be more independent. The problem with this, however, is the fact that my energy level varies significantly from day to day. Because of this, I hardly ever progress in my independence even though I might be able to. The reason is the fact that, if I do something independently once, my staff and others are going to expect me to always be able to do it.

Same for adaptability and emotional regulation: my abilities vary from day to day and sometimes hour to hour. I, for this reason, struggle to really make progress. That doesn’t mean I don’t want to.

Echolalia

Posted on by Astrid

Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

2024: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year and this means doing a review of the past year. I realize I wrote about my 2024 on Saturday already, but I’d like to do a proper review today.

The year started out pretty tough, because I had some issues with my assigned staff, now this side of the home’s support coordinator. I won’t go into detail, but let’s just say he isn’t the most socially adept and his attempts at gaining my trust went horribly wrong. This is the reason he isn’t the one making decisions for me or having meetings with me about my care.

I have had some issues with getting proper care over the past year in general, like when the behavior specialist decided to do the minute-by-minute compensatory system when I was in distress during my time without one-on-one. The reason was the idea that I would need more and more care if they didn’t do this. That is, that’s what my then support coordinator said, but I figured out that the actual reason was the idea that I’d purposefully work myself up in order to get more care. This is simply not true: I pretty regularly tell my staff that they can leave early if I’m doing well, but I just can’t plan my distress to suit my one-on-one hours.

Over the summer, I had some issues with the fact that there were especially many unfamiliar temp workers assigned to my one-on-one care. I mean, I realize that there are more temp workers over the summer when the regular staff are on vacation, but the fact that most of them were assigned to me, frustrated me.

There have been other frustrating aspects to my care, but I’m so glad my support coordinator and two new assigned staff are trying to build a trust-based relationship with me rather than telling me I’m just a negative nagger.

In other departments, the year was a mixed bag too. I definitely didn’t do as well as I’d hoped with my movement, crafting or blogging. In fact, I honestly did worse than I did last year. I did, however, try cooking and baking more often.

Another positive is the fact that I am fully off my PRN tranquilizer and my topiramate and am now on a significantly lower dosage of aripiprazole (my antipsychotic) than I was last year. I also started therapy. First, I tried play therapy, but that wasn’t a success from the get-go. I now am in the early stages of movement therapy based on the Sherborne method.

In general, when I look back at 2024 and compare it to 2023, I can see how in some ways I did worse this year. This feels a bit disappointing and I’m not sure why it is. It may be because of my having significantly tapered my medication. I hope that whether this is the case or not, it won’t get worse in 2025.

That being said, I do feel that I’m starting to develop a tiny bit of trust in my staff and that wasn’t the case in 2023 at all. Here’s hoping I can continue on this journey next year.

This year was a true year of ups and downs in other areas, such as my marriage, too. Thankfully, I’m feeling optimistic that my spouse and I will make it through stronger. We’re both confident that we’ll always be soulmates!

In the health department, I did okay. I gained a little weight, but not so much that it’s worrisome to my dietitian. I remember telling her recently that I hadn’t gained weight last year over the holiday season, but I’m pretty sure that wasn’t correct. As such, I hope that, if I’ve gained weight over this holiday season, I can lose it again.

One last positive: I finally got suitable orthopedic shoes, yay! They still get damage often due to my drop foot, but thankfully not to the point that they can’t be fixed.

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.

Gratitude List (December 1, 2024) #TToT

Posted on by Astrid

Hi everyone. It’s nearly 11PM as I write this. I feel motivated to write, but can’t really think of a lot to write about. However, a gratitude list is always good. I’m joining in with #TToT. It’s been forever! Let’s see what I’ve been grateful for this past week.

1. Inspiration to craft. I mentioned this yesterday too and have been claying again today. I also have many ideas floating around in my head.

2. A visit to a nearby market again. I got fried calamares at the fish stand. I also bought spicy olives.

3. The pasta salad with tuna we had yesterday. And the fact that it wasn’t used as an extra but as the main meal.

4. Sleep. I’ve been sleeping a lot over the past few days. Not always at night, but who cares?

5. Warm clothes. I’m nursing a cold, like I said yesterday, and, though I don’t have a fever, I do feel more comfy wearing warm clothes.

6. The fact that I managed to talk out a recent issue with a staff today. She tried to assign me a temp worker on Friday even though there were other options. It turned out she hadn’t fully understood the agreement.

7. The fact that I now feel at least a tiny bit comfortable with the new staff. With the latest addition to the team, I struggled a bit, but we had a good time on Thursday.

8. My mental state. I’m still experiencing anxiety on a daily basis, but it’s a lot less severe than it used to be.

9. Motivation to write. Like I said yesterday, this is a sign that my mood is improving.

10. The fact that I no longer live independently. I was reminded of the fact that I’m intensely grateful for this again this evening when my spouse called me because of stress related to our house. I feel a bit guilty for not being able to help, but at the same time I’m so glad I no longer have this responsibility, because when I did, it didn’t mean less stress for my spouse and it did mean significantly more stress for me.

#WeekendCoffeeShare (November 30, 2024)

Posted on by Astrid

Hi everyone on this last day of November. I’m joining #WeekendCoffeeShare. I just had my last cup of coffee for the day, with a treat of the Dutch typical St. Nicholas candy mix “strooigoed”. I’d have loved to pass you some, but ate the whole bag myself. I’m just comforting myself that the amount wasn’t nearly what I used to consume during a binge. Anyway, let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. A serious storm passed by here on Wednesday. It was the first major storm in nearly a year and a half or so I read on the news. That surprised me, since it wasn’t even a year ago that a staff from one of the intensive support homes died while riding the side-by-side bike with a client. Then again, the most severe winds aren’t in this province and therefore maybe near the coast people are less likely to go out in stormy weather.

Anyway, during the remainder of the week, it hasn’t rained and sometimes even the sun came out for a bit. Daytime temperatures have been around 8°C.

If we were having coffee, I’d say that I’m doing pretty well this week. I consider the fact that this is my fourth blog post of the week, a positive sign of my improved mental health. I really hope it continues.

If we were having coffee, then I’d share that I have a nasty cold. This morning, I spent most of the time in bed because I was feeling so miserable. No fever, thankfully, but in my case even a cold can knock me down for a few days.

If we were having coffee, then I’d tell you that I’ve been quite crafty over the week. On Tuesday, I created a polymer clay pig for a staff who will celebrate 25 years of working for this care agency on Monday. And just so you know, she was the one constantly asking me if I could create a pig; it isn’t like I think a pig is especially suited to her.

Polymer Clay Pig

On Thursday, I crafted yet another polymer clay unicorn, this one for a new staff, who is into unicorns as much as I am. I tried adding flower-shaped wings to it, but this wasn’t a success, since during the curing process, one of the wings fell slightly down the back of the unicorn and got distorted in the process. No photo, sorry, since I threw the thing into the bin.

Then today, I didn’t know what to do, so I decided to mix a polymer clay color. Not sure what I’ll do with it.

If we were having coffee, I’d share that I didn’t do Black Friday shopping this year. That is, I did purchase some new clay supplies yesterday, but they weren’t on sale as far as I could tell.

If we were having coffee, lastly I’d tell you that we had pasta salad with tuna for dinner today. I had originally planned to make it with a staff, but since I don’t want everyone else to catch my cold, the staff ended up making it himself. He initially wanted to offer everyone a bit as a side dish with our regular meal, but I countered that we have enough to use it as a meal. My plan had been that we’d have a tasty meal for once rather than the mediocre meal service food. Besides, we get treats more often than I want to think of. See my point about the St. Nicholas treat: it wasn’t a binge, but it was more than my food plan says I can have and I’m not even on a weight loss diet.

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.

Tapering My Meds… in 2034?

Posted on by Astrid

Hi all! One of this week’s Writer’s Workshop prompts is to write a post based on the word “medications”. I will probably have another med review with the intellectual disability physician in a few weeks. The aim for me has always been to taper my medications. This will probably take until 2034 and this time my use of the year 2034 is only partially a joke. After all, when I said that “everything will be okay in 2034” and explained to the physician that I always say “2034” when I mean “never” (because of the fact that the book by this title is about World War III), the doctor didn’t understand the joke. She actually seriously said that I’ll be on the right med regimen by 2034.

Like I said, I’ll have another meeting with her to discuss tapering my meds in a few weeks I think. Although I’d really love to decrease my medication dosage sooner rather than later, I do realize that I’ve been struggling more than usual lately. I haven’t shared about this on the blog much, but over the past several weeks, I’ve had emotional outbursts almost every evening. Part of the reason is the fact that there were quite a few temp workers assigned to me. Thankfully, as of yesterday, it was agreed that the staff will no longer send unfamiliar temp workers to me. I am very happy about this.

However, I am also concerned that the temp workers might just be the reason my already irritable brain chose to act out. In other words, it could definitely have been the case that my latest med taper wasn’t all that sensible. For this reason, I have pretty much made up my mind that I will not take another step until January or so. That way, I’ll be able to give the new agreement about no unfamiliar temp workers a fair chance. All I can hope for is that, if I tell the physician I want a break, it won’t end up being an end to it all.

After all, I do still experience significant side effects from my medication, like what I think could be a movement side effect from my antipsychotic (significant tremors and twitches) and I don’t want this to end up being permanent. This is another reason I don’t want to seriously wait for 2034 to be off my antipsychotic. By 2034, I’ll be 48 and that’s too young for crippling movement disorders.