The Good and the Bad: How I’d Rate My Days

Posted on by Astrid

Hi everyone. Today’s Sunday Poser is rather relevant for me. In it, Sadje asks us how we’d rate our day. I’m not going to pick a specific day, but use this as an opportunity to write about the quality of my days and as such my quality of life.

When the Center for Consultation and Expertise consultant met with me last September, at one point she asked me how I’d rate my quality of life on a scale from 1 to 10. I find this difficult to say, as some days just about completely suck while others are okay or even somewhat joy-filled. I said that, on my absolutely awesomest days, I’d still rate them 7 out of 10 due to the fact that I experience pain and other forms of discomfort daily. Honestly though, I’m being optimistic when I do this. Even on my greatest days, after all, I hardly experience any noteworthy things. Like, I consider cooking or crafting to be enjoyable, but is my day really more than just about okay when I have done one of these?

This also signifies that my life could still very much be improved with just a few in my opinion relatively minor changes to my care. However, my staff see it differently, because they believe I can’t do a cooking or crafting activity when I’m in distress and, I believe, they also think I should be happy with just a walk and a dice game each day. Which, honestly, I’m not.

This makes me feel bad. In the words of my assigned staff at the intensive support home, when the staff follow my day schedule perfectly and I get all familiar staff, my day should be perfect. I replied, in my opinion truthfully, that no-one ever has a perfect day.

Now, to answer Sadje’s question about how I’d rate today: I’d probably rate it a 4 out of 10. I was rather distressed due to another incident yesterday. I also didn’t get to do anything other than go for two walks and play a game of Yatzy. I did, however, manage to do some reading and, as you can see, am writing this blog post. This signifies that, despite my distress, I’m still relatively able to function. My days could still be a lot worse. Besides, I had a cup of green tea in the evening. Oh wait, there I was being cynical, because green tea has become my symbol for how I actually feel about my life: when a cup of green tea is the highlight of my day or even week, that’s rather odd.

Care Needs

Posted on by Astrid

Last year, when I was first feeling like I was falling apart at my current care home, I wrote a list of my “needs” and E-mailed it to my assigned staff and support coordinator. I heavily watered down my wishes, thinking a need isn’t the same as a want and whatever comes out of a discussion of my needs, should be working for everybody involved, not just me. For example, I asked for more clarity on what activities I’d be doing each day and offered to use my whiteboard, but also said staff could just ask me what I thought I’d be doing and help me find a suitable activity; this last one was then put into my day schedule, ie. “Staff upon leaving asks Astrid what she’s going to do next”. Needless to say, this didn’t work for me, being autistic, at all, as it leaves the same amount of unstructured chaos as the old wording, which was simply that I had “alone time”, did.

Now, more than a year later and with the Center for Consultation and Expertise involved to help me and my staff improve my quality of life, I’ve written another list, but this time, it doesn’t offer solutions for my unmet needs; rather, it’s simply a list of problems I encounter at this home. In a way, I feel that being solution-focused should be more constructive, but then again this time I have the consultant to think up possible solutions to come closer to meeting my needs.

This post was written for the Six Sentence Story linky, for which the prompt this week is “need”.

#WeekendCoffeeShare (September 27, 2025)

Posted on by Astrid

Hi everyone. I’m joining in with #WeekendCoffeeShare for the first time in over a month. It’s nearly 10PM as I start typing this, so no more coffee for me. I did have a mug of green tea about half an hour ago, but for now it’s just water. Feel free to grab yourself a cup of your favorite beverage and let’s chat.

If we were having coffee, first I’d talk about the weather. Not that I’ve experienced much of it, as I spent most of the week indoors with what I believe to be COVID. The daytime highs most days have been around 17°C and we didn’t get much rain.

If we were having coffee, then I’d share that I paused my activity rings on my Apple Watch because I was too obsessively trying to meet my goals while being sick. I originally intended to restart them yesterday, but for now they’re on pause until this coming Tuesday.

If we were having coffee, then I’d tell you that, today, I finally feel like I might be on the mend. Being me, I did immediately go for a 30-minute walk. My average heartrate was 140BPM, which is high even for me. Let’s hope I won’t be exhausted tomorrow.

If we were having coffee, then I’d share that my spouse finally visited me today. We hadn’t seen each other in a few weeks even though it was our wedding anniversary on the 19th. Then though, I was sick with that could-be COVID thing. Today, we still didn’t do a lot. We went to a nearby pancake place to have lunch.

If we were having coffee, I’d tell you that, on Wednesday, the Center for Consultation and Expertise consultant came by. Like I said on Tuesday, I was only informed a day in advance and the consultant gave as little information about herself as she could (ie. just a first name). I feel incredibly distrustful of the entire process because of this. One of my assigned staff, the student, attended the meeting with me and it was more her telling the consultant what she thinks could be improved about my situation than me. I honestly fear this whole consultation is going to be a waste of time and money, as if the staff already know what I need (which, frankly, they don’t), why involve an independent consultant?

If we were having coffee, lastly I’d share that the student who’s my assigned staff, is leaving on Monday. She’s going to work at the intensive support home I used to live at and I’m struggling not to use that against her. I did, with some difficulty, create a necklace for her, which I’m going to give her when she has her last shift here.

The Could-Be COVID Chronicles, September 2025 Edition

Posted on by Astrid

Hi everyone. It’s been over a week since I last wrote a post for my blog. I’ve had some ideas on my mind, but I’ve been battling what I believe could be COVID since Wednesday. Here in the Netherlands, all official precautions and regulations were ended in early 2023 and replaced with a recommendation to “use common sense”. Now my institution has always been rather careless when it comes to quarantining people suspected of having COVID and I myself am not the most sensible either when there are no rules.

On Wednesday, in fact, I was cooking burgers for the entire home when this whole thing started. I blame myself for several other clients and half the staff being sick now, but the staff say they would probably have caught it somewhere anyway, just like I probably caught it from a staff coming to work sick on Monday last week.

On Thursday, I was in bed all day, but I felt better on Friday, so I decided to go for several walks and a dance. Not a good idea if I indeed do have COVID, as not resting well enough can contribute to having long-term symptoms.

Saturday, I was in bed again for most of the day but dancing at 11PM in my room again in order to meet my movement goal on my Apple Watch. I then decided I really had to rest, so lowered my movement goal for that day and paused my rings altogether on Sunday until tomorrow.

I’m now feeling okay, but not nearly back to normal. Tomorrow, the Center for Consultation and Expertise consultant is coming. There are no longer any rules prohibiting them to visit me and several other staff are working while having symptoms now too. Besides, I didn’t have a say in inviting them, so I don’t feel in a position to cancel.

I do feel guilty for basically doing what everyone else is here, ie. living my life as if COVID is no longer a threat. I know, I don’t know whether I actually have COVID since testing is no longer a thing here either, but I definitely feel this is more than just a very nasty cold.

#WeekendCoffeeShare (August 9, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. It’s 7:30PM, so I just had my last cup (two cups, in fact) of coffee for the day. I’ll probably take a break from writing this blog post for my soft drink at 8PM. Please join me as we chat.

If we were having coffee, first as usual I’d talk about the weather. It’s truly beautiful! Today, the temperature rose to 25°C and it was quite sunny. Rain isn’t in the forecast until next Thursday I believe. I know, climate change and all, but I’m enjoying the summer while I can.

If we were having coffee, I’d share that I am still going strong with my physical activity goals. Yesterday, a staff mentioned the trampoline that’s on the campsite near the institution and we decided to check it out. Today, I went on the side-by-side bike with another staff. Because of this as well as having walked a lot today, I might break my active calories record according to my Apple Watch.

If we were having coffee, next I’d tell you that I unfortunately haven’t been crafting much lately. On Sunday, I created polymer clay earrings that are still waiting to go into the oven. Other than that, no crafty endeavors.

I did, however, create a dessert for myself and my fellow residents on Monday. It was good.

If we were having coffee, then I’d tell you that the rest of the week was quite hard. There’s this temp worker who is absolutely clueless about how to support me and yet he’s assigned to me almost everyday. Staff keep saying I should be giving him feedback more when he’s acting in an unsupportive way. First of all, well, no, that’s not my responsibility. They don’t ask the other clients to give feedback either, but when I point this out, they say it’s different for them because they can’t. I can, sometimes, a little bit and I tried this week in fact, but the temp worker didn’t learn a thing from it. Then I get told that the staff assign to me who they choose and it’s my responsibility to deal with it.

I also was told that, when the staff feel someone is trained well enough to support me, they will be assigned to me and I don’t have a say in it. All this comes across as if it’s me being deliberately difficult with certain staff based on arbitrary things, while in reality it’s the way that they act that makes certain staff more difficult for me to deal with than others. Besides, I’ve had staff assigned to me who themselves don’t even feel they’re capable enough just because these staff want to please and their colleagues pressure them. It may be easiest for staff to assign the most inexperienced temp worker to me because I try to be helpful and, when I am not, it is easy to blame me for allegedly playing favorites.

If we were having coffee, lastly I’d share that the Center for Consultation and Expertise found a suitable consultant for my case, but due to the summer holidays, the first contact won’t be until the end of August. This will unfortunately be a phone call with the behavior specialist. I’m not very trusting of the whole process at the moment, to be honest.

#WeekendCoffeeShare (June 28, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare again. No more coffee for me, as it’s nearly 9PM. I however do still have some slices of cake with nuts and caramel left over from when my sister and her family came over this afternoon. I also have a bag of mini brownies in my cupboard. I didn’t even know I liked brownies, but yesterday we got one with our coffee when my best friend, my parents and I were eating out. They were great! When my father told the waiter that it was my birthday, he offered me a bag of brownies as a treat. So let’s munch on some sweetness while we have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. No complaining from my sister or my nieces about the heat today, yay! It was 26°C this afternoon, but apparently that’s doable for them. The rest of the week was a mixed bag. Early in the week, we had quite windy weather that made it feel chillier than it was. I even wore a jacket on Tuesday.

If we were having coffee, then I’d share that, thank goodness, I survived my birthday! I’m now 39. That’s not what I mean though: I made it through both meeting my parents and the visit from my sister and her family.

Yesterday, my best friend and I drove to Groningen to meet my parents. We walked some time around a library / study hall thingy which had as its only positive for us that you could oversee the city from the roof. Most of the way up, we were able to use escalators, but we had to walk up a flight of stairs to get to the roof. This was a bit scary for me.

After a few hours, we went to a restaurant, the one with the brownies. I was dead set on ordering something I wouldn’t normally eat, so chose the rib eye. When I ordered, the waiter told me it was served with mashed potatoes and, by this time, I was a bit overloaded so didn’t ask for an alternative. Thankfully, my best friend did and I got fries.

The food was good, but seeing my parents was, well, awkward. Thankfully, no arguments and my parents engaged more with me and my best friend than last year. I, however, didn’t want to give them a reason to start making triggering comments so I only replied “Fine” when my mother asked how I was during dinner.

My sister and her family visited me at the institution today. This was actually quite a positive experience. My nieces, who are five and three, were also a lot more engaging with me than last year and a lot less cranky. I allowed both of them to create something with my Fimo Kids clay. I told them I’m going to cure their creations in the oven and could be mailing them their way. Then, my brother-in-law said they’d be in Apeldoorn in a few weeks and could pop over here to pick up their creations then. I actually think I like that.

If we were having coffee, then I’d tell you I got a fitness mat for my birthday from my sister and her family. I really want to work on my strength, but boy is this hard. I tried planking and couldn’t even hold it for ten seconds. When I did a few squats too then checked my heart rate on my Apple Watch, it was 179. It quickly dropped when I was just standing, but this is a good reminder I will want the physical therapist’s advice on starting a strength training routine.

If we were having coffee, next I’d share that we had the institution summer festival on Tuesday and Wednesday. I didn’t participate much, but I did take part in a climbing activity. This was so scary!

If we were having coffee, lastly I’d tell you my assigned staff, behavior specialist, physician and some others had their meeting with the Center for Consultation and Expertise (CCE) on Wednesday. The CCE are going to ask for a consultant to come to my care home and observe me and the staff and on that basis they’re hoping to provide suggestions for better support. I was initially quite pessimistic, but am now cautiously optimistic that things might improve.

#WeekendCoffeeShare (April 12, 2025)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. It’s just past 4:30PM as I start writing my post, so I’m going to interrupt my writing for dinner. If you’d like a cup of coffee, you’re free to join me at 7PM, by which time I’ll probably have finished this post. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. It’s been sunny most of the week and we haven’t had rain in forever. Today, the temperature climbed to 22°C. This is my favorite type of weather, but I do realize that this high temps in April probably mean 40°C in July.

If we were having coffee, I’d tell you I once again managed to get in quite a lot of steps. On Monday, a staff and I went to the nearby lake, which I’d visited a few times with another staff before. While there, I did manage to take a few photos. My staff thought it’d be cool to take a photo of me at the bridge, but none of the photos she took were good enough. Here are a few photos that did turn out okay.



If we were having coffee, then I’d share that I’ve been taking some more photographs. On Sunday, I took some sunset shots. I really want to learn how to capture just the sunset rather than the buildings and trees too.


On Monday, I let my staff take my phone to the yard to snap a picture of an air balloon. I love how Be My Eyes describes the second photo with the bird on it.


If we were having coffee, next I’d tell you that I went out for lunch twice this week. On Wednesday, a staff and I went to Deventer to eat out at a restaurant staffed by people with developmental disabilities called Brownies ‘n’ Downies. There, I got the chicken burger with fries.

On Thursday, my mother-in-law came by for a visit. We drove to a pancake place a few towns away that has a play area for children too. Even though there weren’t many people in the restaurant, it was quite an overloading experience.

If we were having coffee, next I’d share that I’ve been hyperfixating on the idea of doing more cooking. I’ve been looking at smoothie recipes too, but I can’t seem to find cacao powder that isn’t super expensive anywhere in a brick-and-mortar supermarket.

If we were having coffee, I’d tell you that, this week, I’ve unfortunately still been struggling with temp workers being assigned to me. (Of course, my staff will say they’re “regular” temp workers.) Today, the support coordinator assigned me one of the temp workers for the entire morning under the guise of fewer switches. Well, it isn’t like he does this fewer switches thing when my trusted staff are available. IN the afternoon, the other temp worker had to have her one orientation moment with me. We went for a walk and then tried to play a game of dice, but she didn’t understand. The support coordinator told me that, if a staff doesn’t understand an activity, I can choose another activity which does suit them and another staff will explain the activity to them later. This frustrates me to no end.

If we were having coffee, I’d end on a positive note and share that, thankfully, the Center for Consultation and Expertise received our request to get involved. I’m now waiting for the behavior specialist to receive a call planning an orientation meeting. I really do hope I’ll be invited to that meeting.

#WeekendCoffeeShare (March 29, 2025)

Posted on by Astrid

Hi everyone on this last Saturday of March. I’m joining #WeekendCoffeeShare today. It’s nearly 8PM as I write this, so no more coffee for me. However, a fellow client’s parents brought us cheese, sausage and maybe other little snacks to go with our soft drinks this evening. I’ll have apple and peach-flavored Dubbelfrisss as usual. 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 mild most days with daytime temperatures around 15°C, though night-time temps have been around freezing. We had a little rain on Sunday I believe, but I think that was before I woke up. Honestly, I’m pretty sure nature could use some showers.

If we were having coffee, then I’d talk about my physical fitness routine. I am still going strong with my goal of a perfect month on my Apple Watch and, on Thursday, got in over 20K steps again.

If we were having coffee, then however I’d moan about my tremors. I’ve mentioned a couple of times that my right leg trembles horribly sometimes and, usually when it’s been happening, the rest of my body follows suit and starts twitching. Yesterday, it was really bad. My intellectual disability physician usually says it’s most likely influenced by stress, though both of us know that my medication (particularly my antipsychotic) could be causing it too.

With respect to my meds, I’ve often been reacting out of fear of becoming unmanageable and for this reason asking for a very slow taper. My physician has been constantly asking whether my life will become more difficult soon due to for instance more temp workers, because apparently that’d be a reason not to taper further for a while. Now I’ve decided that being manageable is not a reason to put my body through the effects of strong meds. Besides, yesterday I had an aggressive meltdown precisely because I couldn’t cope with the tremors anymore. Now thankfully on Monday my staff will contact the intellectual disability physician, my GP or both.

If we were having coffee, I’d also moan about my shoes. I’d worn one pair of orthopedic shoes for only a week last Thursday and they were already badly damaged. The physical therapist took a look at them and said she thought the orthopedic shoemaker might not have done the last repair properly. I’m not sure that’s the reason they get damaged so quickly. On Friday though, the physical therapist came by and took a video of my walking, which she is going to compare to a video she took about half a year ago. I’ll see her again next Friday and hope she’ll have some ideas.

If we were having coffee, I’d share that I’ve been having bad memories of my time in the mental hospital. Like I said above, the intellectual disability physician here constantly talks about the possibility of more temp workers as an excuse not to taper my medication. This was precisely why I was prescribed medication in the first place: I’d become severely irritable because of the large number of temp workers at the time and my psychologist was threatening me with seclusion if I continued to have meltdowns. Similarly, when on the locked ward, I was literally told I’d be locked up in the “quiet room” if I needed more care than they could provide. I realize rationally that this is institutional abuse, but I’ve internalized a lot of all the bullcrap institutions feed me.

If we were having coffee, I’d end on a somewhat positive note by sharing that the behavior specialist finally filled out the forms to get the Center for Consultation and Expertise involved on my case.

#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.

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.