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.

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.

My 2024 #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

Today’s prompt for Stream of Consciousness Saturday (#SoCS) is “my year”. I don’t usually review my year until December 30 or 31 and, since this post is supposed to be stream-of-consciousness, I cannot do it now either. That being said, I can write down what my year reminds me of.

I am first reminded of the fact that I’ve been tapering my medication since the beginning of the year and am now 10mg down with my antipsychotic and completely off my topiramate. The taper could’ve gone faster had I not landed in crisis just before my first antipsychotic taper and had the behavior specialist not subsequently decided to do the “minute-effing”, by which I would have to compensate for every minute I was in distress during my unsupported time by having less support at my next moment.

The year also reminds me of my continual attempts to get actually reasonably good care, after that system of minute-by-minute compensating was abandoned in late March. I sometimes feel like I could’ve come across like a very hungry caterpillar, but so what? I don’t purposefully experience distress, as the powers-that-be used to think.

I’m also reminded that this is the first full year since 2021 that I didn’t move. Back in 2021, I told my care plan review that I was 95% sure that I wanted to stay in Raalte, but hardly a year after that, I was gone. I resolve for 2025 not to repeat the same mistake.

Overall, 2024 started tough but things have improved ever since. I can’t go into every detail of what I was struggling with in early 2024 and let me just hope and pray that 2025 won’t be the same. That is, improvement is always welcome, of course, but let’s hope and pray that early 2025 won’t bring a setback.

#WeekendCoffeeShare (November 9, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. I apologize for not having commented on anyone else’s posts last week. As I write this, it’s 5:15PM, so I’ve just had dinner. I won’t have my next cup of coffee until 7PM, but at least I’m not writing that it’s too late at night for coffee for me. Let’s have a drink and let’s chat.

If we were having coffee, first I’d talk about the weather. It’s quite chilly, though most days the daytime high is still above normal. Most days, it’s been around 10°C, but yesterday the temperature didn’t climb above 6°C. We haven’t had more than a slight drizzle of rain.

If we were having coffee, I’d share that I’ve been doing okay in the health and wellness department. I walked everyday, though not as far as I’d have liked. I also downloaded the FitOn app onto my iPhone and did a workout on it yesterday. My eating has been okay and I lost half a kilogram over the past week. Sleep has been all over the place though.

If we were having coffee, next I’d share that this week has been tough. You might remember that I shared several months ago about the improvements to my care that would take effect in mid-October. Some did happen indeed, while others didn’t and the end result is that my quality of life isn’t improving.

Part of the problem is the fact that half the team rigidly shove the new rules down my throat and the rest do as they please regardless of what my new day schedule says. For example, in my new day schedule, there are now shift codes assigned to times my staff are with me, so that it’s hopefully clearer for everyone who will be supporting me. Some staff have been rigidly following the rules, while others changed things up, sometimes at the last moment. Most staff also don’t tell me who has which shift a day in advance, yet when I am supported by a staff one day who rigidly follows the rules, they’ll tell me that so-and-so will be supporting me half an hour in advance and not care that I didn’t know the day before because their coworker didn’t tell me. And they’re unwilling to change things up because the day schedule says they can’t. This means I’ve had to deal with new-to-me temp workers three times this week and, at least once, I wasn’t told the day before that they’d be supporting me. This led to me having an outburst and telling my staff that I didn’t want the temp worker. I wasn’t demanding someone else, for clarity’s sake, but the temp worker refused to leave me alone too, despite the fact that I’m not under involuntary care.

There were other things discussed at the meeting that these rules were decided at, but I don’t see these being implemented at all. For this reason, my trust in my support coordinator and behavior specialist has suffered again.

If we were having coffee, finally I’d share that I had a phone appt with an independent client supporter on Tuesday. This appt had been on the calendar for months and I originally intended to say it’s all fine here and to close my file at her agency. That’s not how it went: I was honest that, while I do see my staff have good intentions, it’s still proving hard to figure out the care I need and to make it work with the way the home works. She recommended involving the Center for Consultation and Expertise (CCE) again. This is an organization that helps care agencies and clients when they’re stuck.

I have mixed feelings about this. On the one hand, I am hopeful that an external organization can shed new light onto the situation or, if not, I’m able to accept that my home are doing all they can. On the other hand, I feel slightly guilty for not being able to suck it up when things seemed so positive at the meeting. Hope is the dominant feeling though.

#WeekendCoffeeShare (September 28, 2024)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again today. It’s nearly 10PM here, so no coffee for me. If you’d like some though, pour yourself a cup and let’s chat.

If we were having coffee, first I’d moan about the weather. I had to check back to last week’s coffee share to see if memory was serving me well, as I almost couldn’t believe the daytime high was above 20°C then. Today, the daytime high was only 14°C. It was raining all day yesterday and most of the day today too.

If we were having coffee, I’d tell you that, as a result of the rainy weather, I almost didn’t meet my movement goal on my Apple Watch yesterday. I was tempted to lower my goal for that day specifically, but my spouse convinced me that would be cheating. I then danced around my room for about 25 minutes so that at least I’d meet my goal. I didn’t meet my exercise goal, but that doesn’t count towards the perfect month award.

During most of the rest of the week, I didn’t walk much at
all either. On Thursday, however, I went swimming. This was great!

If we were having coffee, I’d share that I’ve also been quite fatigued lately. I’m probably starting to experience a touch of the seasonal blues.

If we were having coffee, I’d tell you that I had bloodwork on Monday. I had no idea why and in fact was convinced they got me mixed up with another client. Apparently not. However, I had already had breakfast and one of the things needing to be checked was glucose. I thought this would be problematic, but the nurse said it wasn’t. I finally found out the reason for the bloodwork yesterday: it was the fact that I’d been experiencing night sweats. I had long attributed those to the warmer weather, but then again they aren’t gone now (though they’ve lessened). Fingers crossed for all normal results.

If we were having coffee, I’d tell you that I had a meeting with my support coordinator, behavior specialist and mother-in-law on Monday. It was a bit difficult. Though I could see my support coordinator doing her best to help me, it was still quite hard to feel the limits of what she can do for me.

For example, I had been struggling with play therapy because a staff I don’t realy trust had been attending it with me. My support coordinator tried her best to find a somewhat trusted staff for me in the coming weeks but couldn’t, so I felt like giving in and accepting a staff I at least don’t feel bad about.

The next day, I had a candid conversation with my support coordinator. That was somewhat reassuring. Play therapy on Wednesday was still more or less useless.

If we were having coffee, I’d tell you that next week, I’ll be video-recorded in my interactions with a staff. The goal is for staff to look at the tiny signs that might lead to distress and things they can do or not do to help me.

If we were having coffee, I’d end on an upbeat note by saying I’ve been making a lot of smoothies lately. I don’t really have the energy for polymer clay or the like, but preparing a smoothie takes only five to ten minutes. I always create enough to share with at least some of my fellow clients and they truly appreciate it. My best one was a smoothie with pineapple, banana, coconut water and a pinch of cinnamon.

I also finally managed to make a delicious mug cake. I mean, the ones I made before were okay, but there was always something slightly off about them. The only thing about this one was the fact that I couldn’t wait for it too completely cool before consuming it. Otherwise, it was great!

#WeekendCoffeeShare (September 7, 2024)

Posted on by Astrid

Hi everyone. Today I’m joining #WeekendCoffeeShare. It’s 7:40PM as I start writing my post, so like most times, I’ve had my last cup of coffee for the day. I will have a glass of my favorite soft drink in about half an hour and after that it’s just water, or maybe a cup of bedtime tea. However, I’d love for you to join me for a virtual cup of coffee. Let’s get into my post.

If we were having coffee, first I’d rave about the weather. After all, if you know me, you know that in my opinion summer is the best season. It’s September, but the weather is still summer-like. During most of the week, we had daytime highs above 25°C. Tomorrow, it’s supposed to cool off slightly and after that, sometime next week the temps are supposed to drop to 15°C.

If we were having coffee, I’d tell you that I got in a lot of exercise minutes over the past week, mostly walking. I’m doing a challenge with my spouse on our Apple Watches that lasts up till this Monday and so far, I’m doing much better. I had expected to be slightly better because my spouse is a truck driver, but then again we have the same movement goal even though I’m shorter and as a result lighter than my spouse, which means I burn off fewer calories with the same activity.

If we were having coffee, I’d share that I had my second play therapy session on Wednesday. The first was a bit of a disappointment, because as soon as she saw my staff, the therapist started saying I could come alone next time. I felt mostly disappointed about the fact that she hadn’t asked me or my staff why I need a staff to attend our sessions. When I explained this at this week’s session, she was totally cool with it.

We mostly played with PlayMobil®, which was really intriguing. I did overshare a bit this week, which I later regretted. It feels really challenging to set healthy boundaries, which is one of my goals that I told the therapist about.

If we were having coffee, I’d share that I spoke with my support coordinator again today. On Monday I had a meeting with her and the behavior specialist. One of the things I’d asked to be implemented as soon as possible, is the agreement that staff won’t unlock the door for me when I’m in crisis and will, if necessary, physically prevent me from leaving the home. I had since wondered where the agreement that the door be unlocked came from. I looked at my support agreements, but there was nothing. Today, my support coordinator looked all through my file and couldn’t find the agreement either. This frustrates me, as honestly I have no idea who came up with it. It wouldn’t have been as frustrating, had this not been interpreted as a rule by literally all staff, even staff who hadn’t previously let me out the door. I mean, on Thursday I said I was leaving in an agitated tone and immediately the staff said she’d unlock the door for me. It frustrates me to no end that staff are making rules that they don’t write down and that, as a result, can’t be discussed with me. I hope that, once my support coordinator writes the agreement that I can’t be let out the door, which she’s going to do on Tuesday, this at least will stop in this case. I’m pretty sure there are many other unwritten rules about my care though.

If we were having coffee, lastly I’d tell you I’m really feeling like doing something with polymer clay again, but I am rather uninspired. I did try to make a flower pendant this evening, but so far it’s just a cut out flower with no detail.

A Good Meeting With My Support Coordinator and Behavior Specialist

Posted on by Astrid

Hi everyone. I really want to write more about what’s on my mind and, after a few months of struggling, I finally have some good news. I just saw in my private journal in the Day One app that it was a year ago when I heard my moving date to this home. I moved two weeks later. How time flies! After a meeting with the behavior specialist and my support coordinator on Monday, I can safely say that, if the things we agreed on will actually happen, I’m going to have a pretty good life here.

I had requested this meeting a few weeks ago and it was originally scheduled for the 17th of September, but thankfully there was time to do it on Monday. We mostly discussed a document I’d written sometime in early August detailing my care needs (as I see them). Thankfully, most were things the behavior specialist and support coordinator could agree with me on. Here are the things we’ve decided.

1. Less staff switches and more clarity about who will be supporting me during the day. Currently, it’s only clear who will do my two-hour-long activity in the afternoon and the rest is guesswork. I wrote that I can’t help trying to figure out in my head who will be supporting me for which of my eight or so support moments during the day. The support coordinator and behavior specialist came up with a schedule for who will support me when based on what times each staff comes on. This, and all other agreements, won’t take effect until sometime in late October.

Staff will also get designated time to write up their daily notes about me. I also requested staff do a short handover (like, two minutes on how I’m generally doing) when they switch. I can’t remember what was agreed upon about this, but it should be relatively easy with the fact that I’ll have mostly no more than four staff supporting me over the course of the day.

2. My day schedule for weekends will be changed to be the same as my weekday schedule. Currently, there’s a fifteen to thirty-minute time difference, which is confusing. I originally proposed to remove an activity time slot from my one-on-one on weekends, so to make it very different, but that didn’t seem to be a good idea. I honestly mostly said this to stick to my allocated one-on-one hours. After all, the other support coordinator used to be really strict on these.

They’re going to try to get me slightly longer staff support in the evenings. Currently after 7:15PM, I’m supposed to be by myself except for a few two-minute check-ins.

They were also very clear that appointments with the physical therapist, play therapy etc. are not dependent on my day schedule. What I mean is, if they happen to be during a support moment, fine, but if the therapist’s most suitable moment is outside of my one-on-one, that doesn’t mean I’ll need to compensate or go to therapy without staff support. The other support coordinator had been shoving my day schedule into the physical therapist’s face before she could even pull out her calendar, which led me to say that PT isn’t day activities so shouldn’t be during my activity time slot and I’ll go alone if this means no support.

Finally, it was agreed upon that, if I come out of my unsupported time in distress, staff will help me and this does not need to be compensated for (unless it takes so long that staff’s other tasks will suffer).

3. The support coordinator will be advocating for there to be a trusted staff for me at least part of the day most days. The other support coordinator is the home’s planner and he’s been really tough to get along with, so we’ll see where this goes.

The support coordinator did say that she and my assigned staff will try to see me regularly too. I can also ask one of my trusted staff whether I can talk with them (support coordinator or assigned staff) about something.

4. I asked for recognition of how far I’ve come over the years with respect to for instance accepting temp workers, accepting unexpected staff changes, etc. This was quite a hard one to explain, but it eventually made sense.

5. I asked to no longer be let out the door when in distress. I agreed to be physically restrained and led to my room if necessary too. This is going to take effect sometime next week, since I felt really let down when the staff opened the door for me.

I later realized that this is really already in my crisis plan, but it contradicts the support agreement that I’m free to leave the home as I please and as such staff unlock the door when I want to leave. How this will all be put down on paper, is not fully clear with me, but I’m confident it will work out.

Overall, I’m really pleased with the outcome of this meeting. The only problem I can foresee is the other support coordinator, who is really coordinator for my side of the home, discarding everything as unworkable.

#WeekendCoffeeShare (May 18, 2024)

Posted on by Astrid

Hi everyone. How are you doing? I’m joining #WeekendCoffeeShare again. It’s nearly 9PM Saturday, so I’ve long had my last cup of coffee for the day. If you’d like, I can offer you a cup of green tea, a glass of soda or some water though. Let’s have a drink and let’s catch up.

If we were having coffee, first as usual I’d talk about the weather. It’s been quite good with daytime temps most days around 22°C, sometimes higher. On Thursday, we did get a thunderstorm, which scares me.

If we were having coffee, I’d share that, as a result, I had no trouble meeting my movement goal on my Apple Watch each day. I went for walks each day. On Thursday, before the thunderstorm, I also actually rode the side-by-side bike for a little in the morning and then we cycled to Colmschate, a neighborhood of Deventer, the nearest city, in the afternoon. In total, I did 25km of cycling according to my Apple Watch. I reached double my movement goal that day.

If we were having coffee, next I’d say that, generally, Thursday was my best day of the week. I finally worked on a polymer clay project once again. The new student staff was being introduced to me so I decided to show her how I make a unicorn. I got distracted by the thunderstorm a lot, so the unicorn didn’t turn out as great as I’d hoped, but oh well.

If we were having coffee, I’d tell you that the rest of the week was a bit challenging. I’ve been struggling with attachment issues lately. I keep clinging to my “favorites” among the staff. I’ve decided I will discuss this with the behavior specialist when I’m having en appt with her and my mother-in-law on Tuesday, as it really needs to stop for my and the staff’s sake. I mean, I’m allowed to have preferences re staff I get along with, but my anxiety around them abandoning me and the resulting distress isn’t healthy and besides, it might just lead to that exact thing if they feel I’m too clingy.

If we were having coffee, finally I’d share that my spouse and I were trying to figure out ways for seeing each other over the weekend, since due to Pentecost all shops and lunchrooms are closed on Sunday and Monday. I finally came up with the idea of traveling to our house by ParaTransit on Monday. I haven’t been there since Christmas. It should really be cool.

Worries

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is about worries. What worries you about the future?

Unlike Sadje, I mostly have personal worries occupying my mind. Most of them also aren’t long-term. I mean, I do sometimes worry that the sweet and high-fat foods I consume today will lead to an untimely death ten or twenty years from now, but that worry isn’t as all-consuming as my worries about the next few weeks, months or the next year. I joke that, in 2034, everything will be okay. I got that from the book titled 2034, which I still haven’t read and is about World War III erupting that same year. I think it’s more likely that World War III is going to break out that year than that the care system will be any closer to ideal. However, in reality, I can’t look that far into the future, so I know I should care, but really I don’t.

This is probably the same reason the state of the planet doesn’t keep me up at night. That is, except when I read a news article detailing that the magical 1.5 degrees of warming have been hit in some parts of the world in 2023. Then I did worry: will the planet catch fire (not even sure whether I’m talking hyperbolically with all the wildfires we’ve had) next year?

Still, most of my worries concern my personal life. That doesn’t mean the news doesn’t effect me, but it only does when I think it relates to me personally. For instance, when I read that policy makers were talking about reintroducing 24-hour diapering for elderly people who can still use the bathroom but need assistance with it, I was intensely worried. It was said in the same article that the phrase I repeat many times over and over again when talking about my care was: “It’s better to have reasonably good care for two people than excellent care for one person.” Did they mean me? Was my care, with (at the time) nine hours of one-on-one a day, “excellent”? Apparently, because now I have just seven. But I’m still worried they mean me. After all, I still cost considerable money (far more than elderly people needing an hourly assisted bathroom break) and aren’t sedatives cheaper than one-on-one, just like diapers are cheaper than nursing assistants?

It isn’t really a clear thing I do worry about though. I mean, yes, I do worry about my care being cut, but then again, I can’t look far into the future. When I try, I’m always wrong on so many levels. So they remain mostly vague worries that keep me up at night.

Sometimes though, like recently, they’ve been more short-term, concrete things that worried me, such as over the past week the fact that my support coordinator, behavior specialist and intellectual disability physician had a meeting on Friday. The positive news is that the explicit compensatory system, by which every minute I’d come out of my unsupported time in distress had to be compensated for at my next one-on-one moment, was discontinued. Rather, from now on, staff will again discuss with me once I’m calm whether they can come back at a later time for my next support moment since they needed to spend more time on me. I am so happy I no longer have the compensatory system hanging over my head, even though some staff said the end result would be the same. I don’t care about the end result (which, by the way, will probably mean I’ll need slightly less support, honestly); I care that this makes me feel much more comfortable.