#WeekendCoffeeShare (July 12, 2025)

Posted on by Astrid

Hi everyone. It’s been a full week since I last wrote a blog post. I really would like to write more, but I’m struggling massively. Today, I’m once again joining #WeekendCoffeeShare. It’s 7:30PM, so no more coffee for me. I didn’t end up having the green tea I mentioned last week, but I might today. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. Honestly, I can’t remember what the weather was like early in the week, but the last few days, it’s been good: partly cloudy with some sunshine and daytime highs around 25°C.

If we were having coffee, next I’d tell you that I’m still going strong with my movement goal on my Apple Watch. I never ended up doing those fitness mat exercises I mentioned last week, because I had to cancel my movement therapy session this week. I’m hoping I can do some exercises next week.

If we were having coffee, then I’d share that I’ve been quite depressed lately. On Sunday, I was even talking ending my life and, on Monday, I had a meltdown in which I self-harmed.

The staff who witnessed me talk suicide and who was the only one able to comfort me after my meltdown, asked the behavior specialist and team manager to come and talk with me. This meeting took place on Wednesday morning, but another staff attended it with me. I was masking heavily during the meeting and constantly rationalizing my feelings away. The team manager at the end said that he was glad I was doing okay, because there’ll be a time when he won’t have time for a meeting. That plus something about things possibly getting worse. This caused my thoughts to spiral and this got me intensely desperate. I was able to tell the staff who’d attended the meeting with me, that this comment caused me distress and she would try to relay this to the team manager.

When, about an hour later, the staff who’d witnessed my meltdown etc. came on shift, I expressed my despair to her, By this time, I was inconsolable. I cried and cried and cried and was intensely hopeless.

Finally, the staff contacted the behavior specialist, who came again to talk with me and this staff. This was an okay meeting. I’m still skeptical things will improve, but not entirely hopeless.

If we were having coffee, I’d share that I’ve been reading some books about autism by autistic authors. One is The Autistic’s Guide to Self-Discovery. I’m unfortunately struggling quite a bit to concentrate on it, which in turn reinforces the belief that I’m too broken to benefit from it.

If we were having coffee, lastly I’d tell you that my best friend’s mother came by on Thursday. She brought the new nightstand that she and my best friend had bought at Ikea to replace the one that broke when I fell over it several weeks ago. She also brought me a birthday present: some colors of Sculpey Soufflé, which is a brand of polymer clay I don’t have yet.

We went to have lunch at Hema and then went to the supermarket to buy blueberries and candy bars for me and carrots for her. I also told her about my state of mind, since she’s currently my informal representative. I do want to make my best friend informal representative for me too, especially once we’re formally divorced. I still want my now mother-in-law on it too because she has the capacity to attend meetings with me. However, I mostly want to make sure that in no way are my parents or sister contacted to make decisions about me.

#WeekendCoffeeShare (May 4, 2025)

Posted on by Astrid

Hi everyone. I’m once again joining #WeekendCoffeeShare on Sunday, as yesterday, I had a busy day and was too tired to write.

Today’s the day we commemorate Dutch people who died in World War II (and in every war, conflict and maybe they now count terrorist attacks too since). Only 5% of Dutch people currently were alive during our liberation on May 5, 1945. I never was all that much of a May 4 and 5 follower, but I have over the past few years learned to be more mindful of the freedom and rights I and those I love have, since they are more and more being threatened. For this reason, I think I’m going to do the two minutes of silence at 8PM this year. I hope I’ll have finished my post by then. I’ve just had dinner, so no coffee for me, but I’d love to offer you a drink.

If we were having coffee, first I’d talk about the weather. On Wednesday, we had our first day when, at the national weather institute in De Bilt, the temperature climbed to above 25°C. On Thursday, here it even got to 28°C. I read that the first day of temps above 25°C usually doesn’t happen until mid-May. I appreciated it though. Today, the daytime temp didn’t get above 13°C.

If we were having coffee, then I’d tell you I’ve done a lot of walking again, as well as riding the side-by-side bike. My May challenge on my Apple Watch is to double my movement goal twice. I already did it once so far, so that should be ridiculously easy.

If we were having coffee, then I’d share that one of the sick staff whom I’d made the polymer clay frog for last week, let me know via her colleague that she was really happy with it. I had originally asked another staff to pass the frog for the other sick staff on to her. Then, on Tuesday, that staff said it may be nice for the two of us to pop by the sick staff’s house on Wednesday so that I could personally give the frog to her. I did ask the staff whose idea this was to text her colleague to ask her permission for us to stop by, since some care workers with good reason don’t want clients to know where they live. Now I for one never even look up my staff online and would certainly not violate their living space. The sick staff gave her permission so one of the side-by-side bike rides was to there. The staff’s kids were home too and one of them asked me where I live. I, being awkward with young kids that I am, originally mentioned the institution town and then said I lived at [staff’s name]’s work, only to realize that [staff’s name] is “Mommy” to the kid.

If we were having coffee, I’d share that the other side-by-side bike ride was to a market once again. I resisted the urge to buy something, as I’d already been to the supermarket on Monday and I reasoned even just strolling the market is a nice experience. Besides, we did have lunch at a fish diner.

If we were having coffee, then I’d share I’m still struggling with the temp worker situation and how much energy goes into explaining everything to them. Sometimes, I think staff get me, while at other times, it seems as though they’re absolutely clueless.

If we were having coffee, lastly I’d tell you that, yesterday, I went to Nijmegen for a cerebral palsy meeting again. It wasn’t the nationwide CP day. That had been in early April but was held in a city that’s a two-hour journey from here, so I hadn’t gone there. Nijmegen is about a 45-minute drive in good traffic. This meeting lasted three hours total and there was no theme. Rather, we gathered in a restaurant and had lunch and some drinks and just chatted. I have met many of the participants a few times before, but there were a few newcomers too. With one of them, I chatted almost the entire time, because we had so much in common. She recommended a few resources to me too.

After the meeting, I had decided to go to my best friend’s parents’ house (ack, “in-laws” is a lot shorter 😉). My best friend picked me up in Nijmegen and drove us there. My best friend’s sister was there for a bit too with her one-year-old son. I really don’t do well with kids, although this one is a lot less loud than my nieces.

I didn’t get back to the institution until 8PM yesterday and went to bed shortly after 10PM. I’m honestly still quite tired.

#WeekendCoffeeShare (March 22, 2025)

Posted on by Astrid

Hi everyone. It’s nearly 10PM here. I really wanted to write today but, for reasons I’ll explain in a bit, didn’t get to it. I’m joining #WeekendCoffeeShare. No more drinks for me except maybe some water, but if you’d like to, feel free to grab your favorite beverage.

If we were having coffee, first I’d talk about the weather. It’s been absolutely delightful. Yesterday, the daytime temperature was as high as 22°C and I wore a skirt. I usually don’t wear skirts in colder weather because I don’t like wearing tights. It felt so good to be able to wear a skirt. I also loved the sunshine.

If we were having coffee, then I’d tell you that I got in a lot of walking again over the past week. I really liked being active.

If we were having coffee, next, however, I’d share that I’ve been struggling badly again. I had an unannounced visit from the behavior specialist on Monday. My initial question was whether any progress had been made in involving the Center for Consultation and Expertise on my care. The answer to that was “No” and the behavior specialist didn’t offer any clarity on when she was going to get the ball rolling. My feeling is it’ll be 2034 by the time they get involved.

She did, however, have a lot of new so-called “agreements” (I’d call them executive orders) on my care. She pretty much ignored my input and there’s nothing about the things I said in the bullet points my assigned staff wrote in my records. Some of the new rules include:


  • New staff get only one chance to be oriented to me for each task (activity, morning routine, meal) and then they’re supposed to be “regulars” and can be assigned to me whenever the staff want. If I am not accepting them for their orientation time, it’s a missed opportunity on my part. I didn’t find out about that last bit until today.

  • I can be physically dragged to my room if I’m having a meltdown in the communal areas.

  • Staff will no longer be forced to rotate almost each support moment. Sounds good and it was what I wanted, but now they’re supposed to decide at the end of each moment who will come for my next moment, giving me only half an hour to adjust.

If we were having coffee, I’d tell you that the staff tried to orient three new “regular temp workers” (that’s an oxymoron in my opinion) to me within the next three days. I didn’t accept two of them. One because it was the evening after the meeting with my behavior specialist and a relatively new staff would be orienting her colleague. The other, I never said I wasn’t accepting but I was in a lot of distress and somehow my assigned staff made up that it was because of the new one.

The third one, I accepted without protest for my morning routine even though I later found out staff are supposedly first oriented to an activity. The staff being oriented kept asking me whether I’d explain things to her if she forgot. Well, actually, no, since I’m pretty easily overloaded by lots of questions. “She does pay attention, don’t worry,” the regular staff told me. Well, I do worry.

Unfortunately, I got a lot of negativity in my records for my behavior and yet there wasn’t the slightest acknowledgement of the fact that I’d accepted the third new staff without protest. That feels intensely unfair to me.

If we were having coffee, I’d share that the support coordinator did, for some reason probably only he knows, decide the new “regular temp workers” can’t be assigned to me yet even though by the behavior specialist’s rules, I’ve had my chance with all three. I am grateful for this, although I do understand I’ll need to accept them soon enough. That, hopefully, will go okay.

If we were having coffee, lastly I’d share that I’ve been writing up positives and negatives of the day each day for a few weeks now. Looking over these, it shows that I do appreciate small joys.

For example, there’s a new sensory room on the other side of the home and I’ve been eager to use it. I’ve also donated some stuffed animals and cushions to it.

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 (July 13, 2024)

Posted on by Astrid

Hi everyone. I’ve once again not been blogging, but this time it’s not because I’m struggling. Well, I still don’t feel the greatest, but the main reason I haven’t blogged is that something else has caught my attention. I’ll talk about it in a minute. Want a coffee? I’m joining #WeekendCoffeeShare once again. It’s past 10PM, so no coffee for me, but since this is a virtual get-together, you can have whatever you like. Let’s have a drink and let’s catch up.

First, if we were having coffee, I’d share about the weather. It’s been all over the place. On Tuesday, it was hot and humid with a daytime high of 30°C. Then we got this giant thunderstorm. Wednesday and Thursday were still okay with daytime temperatures of around 22°C. Yesterday though, it was not just raining all day, but it was freakin’ frigid with a daytime high of 16°C. Today is slightly better.

If we were having coffee, I’d tell you that, despite having my new Apple Watch wristband, I didn’t meet my movement goals each day this week. I blame the weather. I thankfully no longer care as much as I used to and can sit back and relax every now and again rather than having to keep up with my activity rings. I did try to walk each day (except for yesterday) and went swimming on Thursday too.

If we were having coffee, next I’d tell you that, yesterday, I went to an Eye Association meeting for young people who are blind or visually impaired (and a few who have an eye condition but can still see quite well). I originally thought I’d be too old to qualify as a “young person”, but the target age group is 18-45. I had a good time, but towards the end got quite overloaded. I had a near-meltdown when the taxi driver called me but I couldn’t hear him over the noise in the cafe in which the meeting was held. I for a bit thought I upset the entire group and wouldn’t be welcome anymore, but thankfully it wasn’t this bad according to several people.

If we were having coffee, lastly I’d tell you all about my latest obsession. I originally wanted to write a separate post about it on Thursday, but got distracted by the actual thing. It’s learning Spanish on Duolingo. I’m currently still at the early A1 level of proficiency. My spouse and mother-in-law have both been learning Spanish on this app for several months. What got me into it though was a conversation in a Facebook group about language learning. Some people said Duolingo isn’t always correct, but I’m not sure whether they were referring to a specific language. I can see why though in a way, as for example early on in the Spanish course, you’re learning the word “elegante”, which Duolingo claims translates to “elegant”. Now I’ve never heard an English-speaking person use the word “elegant” in everyday conversation. I honestly couldn’t care less though, as if I ever get to a point where I can actually talk in Spanish outside of the app, I’ll teach myself the finer details of conversation.