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 (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.

Gratitude List (June 30, 2024) #TToT

Posted on by Astrid

Hi everyone. Today, I’m doing a gratitude post. As usual, I’m linking it up with Ten Things of Thankful. I’m not in a good mood, but, as I usually say, that’s the best time to do gratitude posts, as it usually surprises me with how many things I can come up. Let’s go!

1. I am grateful for the weather. On Tuesday, Wednesday and Thursday, it was a little hot for my liking, but the temperatures setteld down eventually and today the daytime high was 23°C.

2. I am grateful I tolerate the heat pretty well. On those hotter days, when the daytime high was 30°C, everyone was complaining about being hot, but I handled it okay.

3. I am grateful the institution “townhouse” was finally opened last Tuesday. If I’m correct, construction finished over a year ago and I was half-joking that they’d built the thing without realizing budget cuts would mean there was no use for it. It will be used for leisure activities. I do wonder what will happen to the building these activities used to take place in, since that building too had extensive roof work done recently so I’m hoping they won’t just let that building rot.

4. I am grateful for cheesecake. I made it as a birthday treat for the entire home (both sides, so 20 clients plus staff) on Thursday. The staff I made it with, had never made a cake or pie before, but it was a definite success.

5. I am also grateful my order for buns at the local bakery went well. I was going to treat the entire home to hamburgers, but when I tried to order the buns online to be collected on Thursday, something on the payment website caused me to go paranoid and I canceled. My spouse calmed me down and I retried and was successful this time.

6. I am grateful the hamburgers were delicious! I had two of them.

7. Speaking of my birthday, I am grateful many of my fellow clients came by my room in the morning to wish me a happy birthday and to sing for me.

8. I am grateful for two cards from a former fellow client from the intensive support home. I by chance walked by there today and she called out to me and went inside to fetch the cards.

9. I am grateful for the gift voucher for one of my favorite clay stores I got from my sister. I am full of ideas of what to buy with it.

10. I am grateful for the music pillow I got from my spouse as a birthday present yesterday. It is connected to my iPhone via Bluetooth. After a bit of trial and error figuring out how it works, I slept like a log last night listening to one of my favorite calming music albums on Spotify.

What are you grateful for?

A Birthday Visit From My Sister and Her Family

Posted on by Astrid

Hi everyone. It’s really been forever since I last touched the blog. I won’t even promise I’ll try to make a habit out of posting more regularly, as I just don’t know when the motivation and inspiration strike again.

I originally wanted to link this post up to Leigha’s Sunny Sunday, then realized my post, though not overtly negative, wasn’t specifically positive either. I could say that yesterday was a literal sunny Sunday though, with lots of sunshine and daytime temps of 25°C. We’re supposed to get sunny weather at least up till this Thursday. I actually like it, but some people are already complaining that it’s too hot. Then last week they were complaining that we didn’t get a proper summer, as it was raining and the temperature usually didn’t get above 18°C.

Yesterday, my sister and her family (my brother-in-law and two nieces) came by for an early visit for my birthday. They arrived here shortly after 9AM, because they had wanted to visit the petting farm here on institution grounds and, according to the website, its opening hours were 9AM-10AM. When we arrived, we saw that it wouldn’t close till 11AM. Its size was a little disappointing to my sister and my nieces (particularly the older one) were tired so it was hard to keep their attention.

We also took a walk on grounds, during which my older niece went on the swings. I tried to push her, but just as my sister was about to take a picture, she jumped off. Both of my nieces also had a turn playing the outdoors xylophone. At one point, my youngest niece, who is two, played “Jingle Bells”. Couldn’t have been farther away from Christmas, but who cares?

The family gave me two unicorn-themed presents: a unicorn bag filled with shower products and a My Little Pony Unicorn which supposedly has candy-scented hair. I probably looked a bit disappointed when I opened the gifts and to be honest I was, but when I talked to my spouse later on I realized from my nieces’ perspectives these are really well thought out gifts. My sister also promised me a gift card for one of my favorite claying supplies stores, which will be really very much appreciated.

We had lunch in my room and backyard. I had ordered poppy seed and sesame seed buns, as well as muesli rolls, from the local bakery. These were delicious!

The family left at around 1PM. It was a good visit overall, although looking back I’m glad I didn’t have my spouse over as well, as that would’ve been too tiring.

Stabilize With Medicine

Posted on by Astrid

I talked to the support coordinator, the one who’s officially the other part of the home’s support coordinator but attends my meetings with the behavior specialist because I don’t get along with my support coordinator (my former male assigned staff). She had talked to the intellectual disability physician and I won’t have a meeting with her on tapering my medication until late September. The reason is the fact that there’s lots of temp workers at the care home during the summer months and they want me stable for now. Well guess what? If you want to wait for there to be few temp workers, you’d better wait for 2034, as I usually say. For those not aware, 2034 is my code word for never. It’s inspired by the book called 2034, which is about World War III.

I’m pretty angry about this whole thing, because well I already have mildly decreased kidney function as is. That is, I had mildly decreased kidney function a year ago at my last bloodwork, so who knows if it’s gotten worse now? And, as you might know, kidney disease doesn’t usually cause symptoms until it’s pretty advanced.

I don’t even mind waiting till September, except that this means seven months on my current med combo rather than the originally planned six weeks. And except that who knows what will get in the way in September? For all I know, the support coordinator might’ve gotten pregnant or sick or have left like the last one.

I honestly feel like they want to stabilize me with medicine rather than with the right support. And, for what it’s worth, I’m not very stable as is. Never was. Not with five different medications, many of which on high doses.

This post was written for John Holton’s Writer’s Workshop, for which one of the prompts is to pick a line from a song you like and use it as the title of your post. I picked the line “Stabilize with medicine”, which I’m not sure is a full line, from the song Serotonin by Girl in red. This song is rather explicit, so I hope John doesn’t mind me sharing it in his challenge.

Experiencing Envy As an Enneagram Type Four

Posted on by Astrid

Hi everyone. Lately, I’ve had some real struggles that got me thinking hard about myself. I often want to love myself and that, interestingly, seems to include denying my less than stellar qualities. Then again, if I really want to love myself as I am, that includes accepting my shadow side too.

Today, I am focusing on one of these aspects of myself I’m not so proud of: envy. I’m exploring this from an Enneagram point of view.

As those who’ve read my other Enneagram-based posts know, I’m a type Four. Fours’ core vice is envy. More specifically though, I’m a sexual/one-to-one (SX) type where it comes to instinctual variants. These are not just focused on envy, but on competition.

I don’t necessarily consider myself very competitive in sports or games or whatever. In fact, I’m quite the opposite. However, I realized I’m an SX type when reading the first chapter of The Complete Enneagram by Beatrice Chestnut and watching some YouTube videos too. I realized I do compete with my fellow clients for care.

Like, I can’t stop claiming that one particular fellow client doesn’t need to deal with temp workers. Whether that’s true, doesn’t even matter to me, as I honestly couldn’t care less about his care. In that sense, I’m not competitive. Oh wait, that’s a lie. I didn’t start competing for care until I met the full-time one-on-one client at the intensive support home, so in this sense, it does matter what others have.

I do also believe envy is part of what got me to decide to enter a forum my spouse is active on recently (I left when my spouse called me out). My intention wasn’t to spy on my spouse, but rather I was envious of the connections my spouse had made through that forum. Never mind that I am on a ton of forums myself and could have developed genuine connections if I just cared to put in the effort. I probably have myself and my being a Four to blame for the fact that I never feel like I belong anywhere. Which makes me think, maybe I really am not an SX type, but a social (SO) type. I do need to look into instinctual variants more.

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.

Vignettes About Unicorns

Posted on by Astrid

Hi everyone. Today I’m joining Writer’s Workshop. One of the prompts is to share at least five moments of your life (not events, but merely vignettes) that are somehow related. I, for some reason, was immediately drawn to the theme of unicorns. Let’s see what I can come up with.

1. I remember having a unicorn My Little Pony figurine as a child. In fact, that’s a lie, as I think it was my sister’s, but I loved her anyway. In my memory, she was light purple, but I could’ve misremembered that, since my favorite color is lilac.

2. Last October (I think), I got a unicorn soft toy from my spouse as a thank-you gift for my support throughout our relationship and particularly over the past several months.

3. The other two unicorn soft toys on my bed, I bought at the fall fair here on institution grounds last October too.

4. Which reminds me, I have a lonely unicorn soft toy sitting in the soft toy cabinet. I got that one for Christmas at the last day center I attended while living with my spouse.

5. Oh wait, no, I have another unicorn soft toy in the cabinet. I got that one when leaving the care facility in Raalte for the intensive support home. Oh, how I miss being in Raalte still.

6. Now enough with the soft toys. The first unicorn I created, in July of 2021, I did entirely from a YouTube tutorial. I gave it to my spouse, who probably still has it.

7. I remember crafting my first unicorn at the intensive support home with my assigned staff. It didn’t turn out as good as I’d liked, but it was okay.

8. I gifted her my best unicorn I created while there when I left. Too bad she ignores me now…

9. When I left the intensive support home, I gifted each of my fellow residents a small cutter-created polymer clay unicorn.

10. I used for it a cutter I’d gotten for my birthday last year from my parents. My spouse had also gifted me unicorn-themed cutters at some point, which I originally intended to use.

11. I read my first unicorn-themed book a few years ago. That is, I probably read some in childhood too but not sure since they weren’t as popular as they are now. The book was a short picture book called First Day of Unicorn School.

12. My current unicorn-related read is the second book in the Unicorn Academy series by Julie Sykes. Oh wait, that’s not exactly a memory I’m sharing…

13. I can’t remember when I started calling my spouse “head unicorn catcher”. The reason is the fact that my spouse’s truck route is named after a city which has the unicorn as its symbol. Oh wait, that wasn’t really a memory either.

But I got to thirteen. So I’m allowed to share this post with Thursday Thirteen too. So if my post doesn’t meet the criteria for Writer’s Workshop, at least it meets the criteria for that.

Gratitude List (April 26, 2024) #TToT

Posted on by Astrid

Hi everyone. How have you been? I’m participating in Ten Things of Thankful with a gratitude post once again. It’s been a while. I however have quite a few thankfuls to share, I think, so let’s go.

1. I’m grateful for homemade pizza. My spouse, mother-in-law and I made it together at my in-laws’ house (my father-in-law wasn’t there) last Saturday after the CP conference.

2. I’m grateful for a side-by-side bike ride on Sunday. I was assigned an extremely tall staff member for my one-on-one and, for those not aware, I am short myself. This makes walking with him quite a challenge, as we haven’t yet figured out a way for him to guide me that doesn’t cause me pain. However, I came up with the idea of biking instead.

3. I am grateful for the fact that my attempt at making overnight oats on Monday turned out to be a success! Last time I made them, I added way too much milk.

4. I am grateful because, on Tuesday, I was able to cook köfte for my fellow residents and staff. It took me quite some time, but that’s not a problem.

5. I am grateful for French fries on Wednesday. Oh, I’m making more than half of this list about food, but okay.

6. I am grateful for an opportunity to go swimming yesterday. I had gone swimming twice last week, once with my own home’s residents and once with a small group. I hadn’t expected to be able to join the small group this week again and swimming for my home was canceled because most residents were on the annual trip. However, I was able to join the small group anyway.

7. I am grateful for a trip to the institution museum this afternoon. It’s a really small museum, but it was interesting to learn about the history of the institution. Plus, we got free mini pancakes! Oh wait, that’s another food-related thankful…

8. I’m grateful for a day without rain today. We had rain most of the week and, though I could go on walks everyday inbetween showers, I couldn’t go out nearly as much as I’d have liked. Today though was a rain-free day and we even had a bit of sunshine.

9. I am grateful for an appointment with the nurse practitioner who works at my local GP practice re my decreasing mobility. I’ll have a physical therapy appt soon too but I’d really like to know what’s causing my mobility impairment (CP or something else) and whether a decrease in mobility is to be expected or what can be done about it.

10. Last but not least, I am so grateful I seem to be slowly crawling out of the pit of depression I was in.

#WeekendCoffeeShare (April 13, 2024)

Posted on by Astrid

Hi everyone. How have you been? I’m joining #WeekendCoffeeShare today. I’m writing this post in the afternoon on Saturday, but might not finish it until the evening as I’ll try to fully enjoy my one-on-one support time while there’s staff I get along with well in the home today. It’s a little warm for coffee, so if you’d like a cup of that, fine by me, but I could also offer you orange and tangerine-flavored Dubbelfrisss. I also should still have a couple Mars ice cream bars in the freezer. Let’s have a drink or ice cream and let’s catch up.

If we were having coffee (as I always say), first, I’d talk about the weather. It’s been on the warm side for April here. Last week Saturday, the daytime temperature even rose to 25°C. Yesterday and today, we got daytime highs of 21 and 22°C respectively. The rest of this week, the temps have been lower and we did get some rain. Next week, we’re supposed to get daytime temps barely above 10°C, which I don’t like. However, that’s probably closer to normal.

If we were having coffee, next I’d tell you all that I’m still going strong keeping up with my physical activity by walking everyday. So far, I’ve closed all three of my activity rings on my Apple Watch each day since the beginning of the month (and possibly a few days at the end of March too. I’m aiming for a perfect month with respect to my movement ring at least, which I haven’t had since last September.

If we were having coffee, I’d share that I finally got the long-awaited orthopedic shoes. They fit well, but the brace that’s in them doesn’t effectively help my really bad drop foot and as a result, the left shoe got noticeably damaged after only two fifteen-minute walks.

If we were having coffee, I’d tell you that, last Sunday, my spouse and I together worked on a polymer clay project. I’d proposed we create a unicorn, but my spouse came up with the idea of crafting a triceratops (“unicorn dino” with three horns) instead. It was fun, but definitely an exercise in letting go of my need for control.

Polymer Clay Triceratops

If we were having coffee, I’d tell you that the rest of the week was quite hard. I’ve been struggling with feeling quite depressed lately. I have been feeling like my world is becoming smaller and smaller with all the things I cannot do. It’s been more so on my mind lately given that many of my fellow residents are going on the home’s yearly week-long sleepaway camp at the end of the month and it’s not even been asked to me directly whether I wanted to go too. Rather, I overheard the staff talking about the camp a few months back and mumbled about it not appealing to me and that’s the end of it. I’m supposed to stick to my day schedule, which currently consists mostly of walking around institution grounds and playing dice games. Some staff say I might be able to be in the communal room more, but to be honest I don’t care about being in the communal room just sitting around.

Yesterday, I tried making a cheesecake with my assigned staff in the communal room but got overloaded by one of the other clients (who will stay here during the camp as well). It led me to spiral into a massive emotional outburst. After all, now everyone tells me I’ll never have a better life anywhere anyway so I’d better accept the life I have now. Why didn’t anyone tell me this two years ago? The answer is simple: at least some of the people at the care facility in Raalte secretly wanted to get rid of me. This is intensely saddening to me.

If we were having coffee, I would end on a positive note though by saying that one of the staff who told me to accept my life yesterday, offered to take me on a short car trip to Deventer this afternoon. We had a cup of coffee (I decided to buy both of ours) and walked around the marketplace, where the staff bought me a stroopwafel and I bought a small serving of garlic-filled olives.