Hope for My Home #SoCS

Posted on by Astrid

Hi everyone. Today’s prompt for #SoCS is “starts with ‘ho’”. The first word that came to mind for me was “home”. In less than two weeks, I’ll be at my current care home two years. I remember celebrating the two-year mark in Raalte, almost fully confident that I’d stay there for many more years. In fact, at my care plan review at the end of September (I moved into the care home in Raalte in September too), I said I was 95% sure that I wanted to stay there. “Make it 98%, please,” said my home’s manager. A year later, I had moved to the intensive support home and, as it turned out, the higher-ups in Raalte didn’t want me back.

Another word that came to mind is “hope”. We all could use a little hope, I think. I want to start by saying that, if I celebrate my two-year stay at this home, it doesn’t mean I’ve jinxed (a word I only recently learned of) it and I’ll be voluntarily kicked out of here in less than a year, like in Raalte. I still hope there’s room for improvement in my care and, rather than being shoved around, I’ll finally be able to feel home.

I do admit I have good days. Today, I baked a Biscoff blondie with my staff. That was fun! I just so wish that my life were actually relatively good rather than my having to hope everyday that this day will not suck. Not that a day when I don’t bake sucks, of course. Life is more than Biscoff blondies. But when all I can tell my spouse on the phone that I’ve done today is walk and play dice games, it’s boring. And that’s while my life could be so much less boring if I were able to contribute. And I don’t just mean cooking, baking and crafting. I mean the less interesting tasks of daily life too. I feel accomplished when I’ve helped with some chores around the home. I hope that when, at some point, my new day schedule is created, life’ll be a bit more fulfilling.

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.

2023: The Year in Review

Posted on by Astrid

Hi everyone. It’s the last day of the year. I am dealing with a nasty cold and very much overloaded by the early fireworks. I really expected the institution town to be quiet, but it isn’t. Regardless, my sense of duty is stronger than my wish to crawl into bed with a PRN tranquilizer and that sense of duty tells me I need to review the past year. So here goes.

I started out 2023 cautiously optimistic. I mean, I admitted in my hopes for 2023 that my day schedule, though better than the one my then support coordinator had given me, was far from ideal. In the months that followed, it would turn out that “far from ideal” was really a euphemism and that the intensive support home wasn’t suitable for me. I know my staff there blame my critical attitude, but honestly my current day schedule is pretty much ideal and, moreover, at least my staff try to think in terms of validating my needs rather than fueling competition for care.

By late January, I had pretty much decided I didn’t feel I could live in the intensive support home long-term, but it took till mid-March for a meeting to formally make the decision to start moving plans again. Then I waited two months before hearing any steps had been taken, then another two before that awesome E-mail from my now assigned staff to my mother-in-law asking what color of paint I wanted on my wall.

In the meantime, I didn’t sit still, though sometimes it felt like it. I indeed wasn’t as active as I was during 2022. I participated in the April #AtoZChallenge on my blog, which was really my only active month this year.

I also helped set up swimming for the intensive support home. After all, the idea to ask the institution pool whether they had a time slot for me and a staff to try out swimming, came from me, and then it turned out this time slot wasn’t available just once, but each week.

For the most part though, over the spring and summer, I struggled. It didn’t help that my support staff came up with the conclusion that I got more one-on-one support than I was getting funding for. This led to regular arguments with my former staff about how to cut those hours once I moved.

When I actually moved and my hours had to be cut, the staff soon enough figured out that this wasn’t a viable situation. Thankfully, I got my hours back, first through my care agency and then through funding from the Care Office.

Once this had been sorted, my life significantly improved. For one thing, I was spending more time creating things out of polymer clay. I also explored other activities, such as baking.

In the health department, 2023 was a mixed bag. I did reach my goal of getting to a healthy BMI, but over the past couple of months I have been struggling to get in the movement needed to meet my activity goals. That is, I haven’t met my movement goals several times this past month. One reason is the weather and the fact that, now that I’m at my current care home, I cannot (yet) go swimming regularly. Another factor though may be the fact that I’ve lost weight and haven’t adjusted my movement goal accordingly. Still another factor may be laziness though.

Lastly, 2023 was the year I left Christianity for good. I mean, I’m still spiritual, but I don’t care for a God that condemns the vast majority of people to eternal suffering, many of whom simply for being themselves.

September 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. September was a true rollercoaster of a month. Let me share. I am joining in with What’s Been On Your Calendar? (#WBOYC).

The month started with me being notified by my support coordinator for my now old home that I’d be moving to my current care home on the 18th of the month. The boxes arrived the next Friday and I started packing. I had a visit at my new care home on the 15th, which my mother-in-law also attended. The new staff seemed nice, but I did feel overloaded having coffee in the living room.

My move went about as chaotically as could be. For one thing, institution transport weren’t available that day, so my old support coordinator had to move most of my stuff, the rest to be moved the next day. For another, the staff here at my new home weren’t prepared with an extra staff member when I moved, so my old home’s staff had to help me get settled.

Handover also went rather frustratingly, so I was happy when my old home staff pulled away after a day. Only then began the trouble with my day schedule. I had been informed by my old home’s behavior specialist that the intention was to keep my day schedule mostly the same as at my old care home while I adjusted. This wasn’t to be. In the first week, at least three adjustments were made to my day schedule, all cutting my hours, and several more changes were not put on paper but were implemented in practice. The most frustrating changes took place in the early afternoon, including a 60-minute group activity time slot. I tried to make it work, but was often too easily overloaded, leading to extreme irritability throughout the day.

Thankfully, yesterday my assigned staff, after talking to the manager, informed me that I would be allowed a one-on-one activity time slot during the early afternoon for now anyway, during which I can do something creative. We’ll have to see how this all works out once my one-on-one has to be renewed in November.

Today, in an attempt to celebrate my time to spend doing crafty activities, I created my first polymer clay unicorn while at this home. I would’ve been able to finish it within said activity time slot had we not also been looking at recipes for baking and put my laundry in the washing machine. Thankfully, my one-on-one staff for this activity time slot was able to come back at a later time and finish the unicorn with me.

Overall, like I said, this month was a true rollercoaster with lots of ups and a few deep downs. Things are looking up now though.

#WeekendCoffeeShare (September 16, 2023)

Posted on by Astrid

Hi everyone. I’m joining #WeekendCoffeeShare today. I just had my afternoon coffee, but will probably not finish this post in one go, as I have an activity moment again in half an hour. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. We’ve had pretty nice late summer weather here with temps rising to between 20°C and 25°C during the day. Next week, we’re supposed to get rain and then I’m pretty sure it’s over with the warm weather, although October can occasionally bring days when the temperature reaches 20°C too. I love telling tales of the day, about five or six years ago, when we had a daytime high of 27°C here in mid-October.

If we were having coffee, then I’d talk about my walking and other exercise. I went swimming on Wednesday. It’ll probably have been the last time for now, as I’m moving to the new care home on Monday, although the swimming instructor did say my new home’s clients go swimming too.

I went on the stationary bike yesterday. Other than that, my physical activity has been hit and miss. Some days, I got in over 10K steps, while on other days, I hardly walked at all.

If we were having coffee, I would however share that, on one of my walks, last Tuesday, I visited the institution petting zoo and took some lovely pictures. The first picture shows the petting zoo’s cat, Macho, on a stack of hay.

There also is a large aviary with parakeets in it. Here are two photos of the birds in their cage.


If we were having coffee, finally I’d tell you all about my visit to my new care home. I went there with a staff and my mother-in-law. Since this staff has been pushing me towards independence more than I can handle lately and since she’ll be doing handover too, I was disappointed that she’d be attending the visit too. After all, that’d mean I wouldn’t be able to talk to my new staff about my needs without her overhearing.

When we got to the home, we were greeted by the man who will be my new assigned staff, same one who’d been talking to my mother-in-law about the color paint on my wall. I had thought he’d be my support coordinator but apparently not. I don’t know who my support coordinator will be yet. Not a problem, since in general you have more day-to-day contact with your assigned staff than your support coordinator. When still outside, I heard a loud singing of “Happy Birthday!”. This turned out to come from the neighboring home though, as no-one had a birthday this day.

We were led into the living room, where a number of residents and another staff were having coffee. I initially thought there were two staff, since one of the residents talked in an almost identical voice and said almost the same things as the staff. This turned out to be echolalia though.

The residents in this home are more significantly intellectually disabled than those at my current home. Most can speak a little though. Like, one told me I had a pretty golden ring. When I told my spouse about this, I was reminded of my preference last year for a home with people with mild intellectual disability. Yeah, I replied, but I didn’t know back then what I had to give up to live with people with whom I can have a conversation.

Overall, the staff seemed much nicer than those at my current care home. For one thing, both staff introduced themselves, while back when I went to look around here last year only the staff who would be giving me the tour told me their name.

I was led to my room, which is the closest to the living room. This has disadvantages, in that I may be able to hear living room sounds more, but it has a huge advantage in that I will be able to find it much more easily than my current room. The wall is a nice baby pink according to my mother-in-law. I wasn’t able to get a real impression of my room without my furniture in it yet, but that’s not a problem.

When shown around, I did make it clear what my needs are re help with my activities of daily living and that I’m not ready to grow yet, since that will take me being stable first. The staff who was with me didn’t comment, thankfully. Overall, I feel less stressed about moving to the new home now that I’ve met my new fellow residents and staff.

I have yet to pack my clothes. Other than that, everything is in boxes now and ready to be moved. I’m ready for a new chapter in my life!

My (Second) Favorite September Memory

Posted on by Astrid

Hi everyone. I want to write, but honestly don’t feel like sharing about all the stressors of the last few days in my current care home. Instead, I decided to draw inspiration from Marsha’s 10 on the 10th post again and share one of my favorite September memories. My favorite of all time is of course my wedding date in 2011, but I’ve written tons of posts about that already I believe. So I’m going to share about my other favorite memory. This is only a favorite memory in hindsight, as it was intensely stressful back then. I refer, of course, to my moving into the care facility in Raalte on September 23, 2019.

I arrived in Raalte at around 1PM, which was a bit earlier than I’d agreed on I believe, but the staff who would be showing me round had just arrived. She showed me my room and let my spouse move my furniture into it. I remember we had some discussions about things that had to be agreed upon. My spouse clearly stated that I couldn’t manage my own meds, as I’d taken two med overdoses when living in our house. The staff had been kind enough to mark the door handles of my room and the living room with tape, so that I could recognize them by touch when wall-trailing.

I also got a short tour of the day center, that is, the group I’d be attending. I remember they had a hand-made banner with “Welcome, Astrid!” on it. The guy who came here in crisis last November also got a welcome banner, but I got nothing when I got here.

In the evening, when the other clients got home from the day center, we had dinner. After that, one of the staff said she was going for a walk with one of my fellow clients. I was tempted to ask whether I could join them, but can’t remember whether I did.

I remember feeling quite a bit in shock when first coming to this care home. I asked my spouse: “You don’t think it’s all stupid, do you?” I referred to the fact that the other residents were severely intellectually disabled. Maybe I’d also noticed the poo smell. This was one of the first things my spouse asked me about when I went to have a look around my current care home. Truthfully though, I don’t care about poo smell if I get proper care.

Gratitude List (September 8, 2023) #TToT

Posted on by Astrid

Hi everyone. It was a rather eventful week. Time for me to focus on the positives in a gratitude post. I’m joining Ten Things of Thankful, which is back after a hiatus over the summer. Here are my thankfuls.

1. I am grateful I have a moving date! This obviously tops my list. Like I mentioned on Wednesday, I’ll be moving to the new care home on the 18th.

2. I am grateful my mother-in-law is taking time off from her volunteer job to come to the visit to look at my room and have a coffee at the new care home on the 15th. Hers may be a volunteer job, but it’s responsible work, as she works for an animal rescue shelter and they’re required to maintain 24/7 availability.

3. I am grateful for quality time spent chatting and playing dice games with a fellow resident. Today, she won, which was good, as I had spilled the beans about my leaving this home a little earlier than I’d originally planned and she was quite upset. For the record, I didn’t let her win.

4. I am grateful for the nice card this resident gave me, even though I told her I wouldn’t be leaving today.

5. I am grateful for sunny and warm (well, hot) weather. It’s a little too hot for my liking, but I love the fact that I can wear my summer clothes a little longer than usual.

6. I am grateful my Braille display and computer both behave. Both gave me a scare this week. I bought new headphones on Sunday. Not because I needed them but because they’re fluffy and pink. Then when I plugged them into my computer, somehow my PC decided to install TikTok. This was a coincidence, as a 3.5mm audio cable can’t transfer data like that. However, I had no clue so started messing with my computer like crazy, uninstalling everything I didn’t recognize. This thankfully didn’t cause any long-term problems, but for a while I thought my Braille display wasn’t working so I must’ve somehow uninstalled its driver (even though I recognize that manufacturer). In the end, rebooting my Braille display solved the problem.

7. I am grateful for a delicious blueberry smoothie I made on Monday with a temp worker. I used frozen blueberries, yoghurt, vanilla extract, cinnamon and sweetener. It was absolutely amazing!

8. I am grateful for some long walks when it still wasn’t too hot outside.

9. I am grateful for a great essential oil blend in my diffuser. Yesterday, a fellow resident was out of control a lot and it was causing me anxiety. I eventually decided to ask the staff to help me create a blend so that I could calm down. I put patchouli, white fir and lavender essential oils in the diffuser.

10. I am grateful for the will to write. I may not always know what to write about, but at least I want to write. I currently have a seven-day writing streak going (although I still need to write today, which will make it eight days) in Day One, which is rather cool. Sometimes, all I write is a quick gratitude list (which I drew inspiration from for this post) or a “My Day” template post, but that’s okay too.

What are you grateful for?

The Wednesday HodgePodge (September 6, 2023)

Posted on by Astrid

Hi everyone. I’m joining the Wednesday HodgePodge once again. Here goes.

1. It’s National Read A Book Day…whatcha’ reading? What’s a book you want to read?
Honestly, I’m not currently reading any book. That is, I’m paging through a few, among them a positive body image workbook and Find Your Path by Carrie Underwood. And of course a ton of journaling books. I can’t remember the last book I actually read. I thought I wanted to read Cathy Glass’ latest foster care memoir, only to find out it’s her penultimate book. That’s truly sad, as I love the author. It immediately caused me so much disappointment I don’t think I want to read this book after all.

2. Which is better…having high expectations or low expectations? Explain why.
I am probably in the minority here, but I think having low expectations is better. Still better yet is having no expectations at all, but to let things unfold as they will. I grew up with parents who put a lot of pressure on me under the guise of high expectations and this – among many other things – led to some emotional scars. I also feel that, if we have high expectations of others in life in general – so people other than those lower on the social ladder than us (like children) -, we often come across as demanding and critical.

3. Serenity is ________________________.
A feeling of calm and being in the present.

4. What’s the most interesting thing in your purse or pocket right now?
Uhm, I don’t have a purse and rarely have anything in my pockets.

5. What helps you calm down?
Ideally, lying under my weighted blanket with my stuffed lemur’s tail over me, my essential oil diffuser on and a calming Spotify playlist like this one playing on my music pillow. Or just lying under my weighted blanket, if my phone needs charging and I don’t have any essential oil blend in my diffuser at the moment.

6. Insert your own random thought here.
I have some awesome news: I have a moving date!!! On September 18, I will be moving to the new care home. I still know next to nothing about it, but I’ll follow my advice on question #2 and just let things unfold as they will.

August 2023 Reflections #WBOYC

Posted on by Astrid

Hi everyone. It’s the last day of the month, so it’s time for my monthly reflections. Overall, August was slightly better than July, but it’s still been quite a tough month. Honestly, it’s been quite a tough year so far.

My spouse’s car broke down a few weeks ago, so we weren’t able to see each other each week this past month. Last Sunday, though my spouse did visit me, it was in my mother-in-law’s car. Thankfully, the car has been fixed for now.

My mother-in-law also only visited me once this past month despite there being five Tuesdays in August and her normally visiting me every other Tuesday. On the 1st, she had to work and on the 29th, a new horse was delivered. The story behind her having gotten a new horse is a bit sad, in that one of her horses, Remco, passed away suddenly last month. I mean, he was already crippled, so could only step around a bit, but still his death was unexpected. The new horse is a young mare called Marrit.

Now on to my own life. It’s been boring. I’ve been mostly waiting to find out more about the move. Last Sunday, my support coordinator told me that I’ll move within six weeks, probably sooner. I honestly have mixed feelings about the whole thing. Obviously, I try to remind myself it can’t be worse than here, but what if it isn’t any better either? Will I be expected to magically flourish there just because it’s not this home? I’m hoping, of course, that I will eventually flourish, but this isn’t going to happen magically. Indeed, this requires work, both on my part and on the part of the staff.

I also, like I mentioned yesterday, have had an increase in flashbacks to my childhood trauma. Of course, I could hope this will lessen when (if?) I’m in a calmer environment, but still I’m pretty sure they won’t disappear without support.

In the health department, I’m doing pretty well. I had a meeting with the dietitian yesterday and she asked me not to lose any more weight. I’m not sure how to do this, truthfully, as I’m eating well overall. There’s also this thought at the back of my mind telling me that I could still lose 10kg and be at a healthy BMI. Besides, I still have quite a lot of abdominal fat and watched some YouTube videos a while back that mentioned the dangers of internal obesity. Then again, the dietitian told me there’s very little I can do about this. The YouTube videos tell me otherwise, but then again my healthy voice is telling me (or at least I’m assuming it’s my healthy voice) that following those YouTubers will just lead to extreme restricting, which will probably just cause me to relapse into bulimia. I’m still struggling intensely with all the things diet culture tells me about what to eat and not to eat to preserve my health and, at the same time, my dietitian has one foot right inside diet culture as well. After all, my food plan was a classic weight loss plan up until I reached a healthy BMI. Heck, the very fact that I mention the BMI here shows how much I’m into diet culture. I want to unlearn this, but I’m not sure how.

With respect to other health factors, I’m doing okay. I walk more than I did in July, have been swimming again and went on the stationary bike occasionally. That being said, I do worry about a decline in my mobility. This could be the YouTube videos again, which told me a loss of arm swing could be a sign of overall decline. I have absolutely no idea whether my arm ever swung at all though. That being said, my drop foot seems to be getting worse too.

I did finally get the eczema on my legs treated. I also got a slight infection on the skin of my earlobes, where I had my ears pierced in early July. I’m currently on a course of an antibiotic ointment, so hoping that’ll work.

In the crafty department, I haven’t been very active. I did create a lot of unicorns out of polymer clay, but they were all done using cutters, not sculpted. I intend to paint them and use them as gifts for my fellow residents when leaving this home.

I’m linking up with What’s Been On Your Calendar? (#WBOYC).