A Few Pretty Intense Days

Posted on by Astrid

Hi everyone. It’s been a few days since I wrote on my blog and I didn’t even check my feed reader yesterday at all. The last few days have been rather intense emotionally.

First, on Sunday, my husband picked me up at 8:30AM to drive to my sister and her family, who live across the country. Little Wolke, my baby niece, was, well, a baby. She didn’t really interact at all. Neither at first did Janneke, my older niece, who will be three in September. My sister did explain that “auntie Astrid’s eyes don’t work” so that’s why I can’t look at her, but she was still shy. Once my sister had taken the polymer clay bear I’d created for Janneke and let her undo the wrapping, she was a little more engaging. I did feel bad that, when she said the bear wanted a kiss, I told her not to (since I keep hearing mixed things about the safety of polymer clay in this respect). I did worry for a while that maybe Janneke was a bit too young for the bear, but my sister said she doesn’t put things in her mouth anymore and my husband said she has to learn.

My brother-in-law kept my husband occupied with the same old stories and jokes he tells each time we see each other. Meanwhile, Janneke warmed up to me and started inviting me in to her play. Janneke had hip dysplasia, for which she needed surgery last September. She still remembers in a way or so I think, as all her dolls needed to go to the doctor and get fitted with a cast (or have the cast sawn off).

At one point, my sister did start talking about needing to get rid of her pregnancy pounds. I felt a little uncomfortable about that, as she’s quite thin and I am still overweight. Then she started telling me about her career plans.

Overall, I did notice that my sister only talked about herself (and her kids). This is okay with me, but it does remind me of my parents often telling professionals that I am only able to talk about myself. It makes me feel as though the reason I’m not allowed to talk about myself is not that it’s about myself, but the fact that I don’t live a “normal” life. In other words, the contents of what I tell my parents makes them uncomfortable more so than the fact that it’s about me. Either that or my sister is somehow a lot more reciprocal with my parents than with me.

I do think I like Janneke after all though. Last time I saw her was at my birthday almost a year ago. My sister prompted her to give me her present, but she said: “No auntie Astrid not nice.” I felt that was both cute and a tiny bit upsetting.

Thankfully, my husband was able to drop me off in Raalte again in the afternoon. I arrived here with half an hour to spare before we’d eat dinner, which was Chinese takeout.

Then yesterday, which was a bank holiday, I spent most of the morning in bed, because a temp worker was assigned my one-on-one shift and the two most recently employed staff, neither of whom I know well, were working the regular shift. The temp worker tried to get me to go out of bed at first, but she had no idea about the activities I normally do during the day and I didn’t have the energy to explain them to her. Overall, I felt really powerless and like I’d rather not have someone there at all. Thankfully, today we’re more or less back to normal.

My First Crush

Posted on by Astrid

Hi everyone. Today’s topic for Throwback Thursday is first crushes. Let me share.

My first crush was a boy called MJ (that is, he had a double first name). I think he was a year younger than me. I was ten at the time and in the fifth grade at the school for the blind. Back then, we would always say we were like 90% in love with the other one. I don’t know where the percentages came from or if kids in other schools used them too. I certainly remember telling MJ that I had a crush on him and at that point, several kids in his class pushed me to kiss him. I gave him a quick kiss on the cheek but till this day feel intense shame about it.

I don’t remember feeling heartbreak when that “relationship” ended. It only lasted for a couple of weeks anyway. I do know that MJ passed away when I was in high school, something I didn’t find out about until many years later.

My second crush was a girl named Layla and I’m not even sure I’m spelling that right. I was fourteen at the time and had only met her once. She was in the grade below me at secondary school. At the time, I was still about as clueless about love as I’d been at age ten. After that first encounter, I never met Layla again and so I never told her I had a crush on her.

For years, I’d have fleeting crushes on various girls and boys who paid me attention, but I never told them. I never quite fantasized about having a husband (or wife, since same-sex marriage is legal here) when I’d grow up. In fact, when my now husband told me he was in love with me, I wasn’t so sure whether to reciprocate it. I did like him, but did my feelings go beyond mere friendship plus a little puppy love because he was paying me attention? In the end, it didn’t really matter, as our relationship and now our marriage is a happy one.

Making Up My Mind: Why I Want to Live in an Institution

Posted on by Astrid

Last week, the behavior specialist for my care home came by for a visit to discuss my housing profile. This is the thing with my wants and needs with respect to a new prospective care home on it. I initially wasn’t too picky, saying for example that I would most like to live on institution grounds but if that isn’t possible, a quiet neighborhood home would do too. Then when I talked to my husband, he said that an integrated neighborhood doesn’t get much quieter than my current neighborhood in Raalte. He also told me I don’t need to make compromises about where I want to live as of yet, since I will be looking to stay in my prospective new home for the rest of my life.

The reason I initially compromised about living on institution grounds, is that my current care agency has only one such institution and that one at least wasn’t admitting new clients back in 2019. I’m not sure about right now or whether not admitting new clients means they aren’t keeping a wait list either. However, I was wary of contacting other agencies due to the bureaucracies involved. Then my husband said though that this shouldn’t be something for me to worry about.

Eventually, after talking about it with my assigned home staff, my husband and my mother-in-law, I decided to make up my mind about my wishes for the housing profile. I said I’d really like to be looking at institutions.

This does mean I had to drop my objection against contacting external agencies. I offered two agencies we could contact other than my current one. One has an institution in Apeldoorn, the city I grew up in, and another in a small town elsewhere in Gelderland, about a 45-minute drive from Lobith, where my husband lives. For reference: Raalte is about a 75-minute drive from Lobith and I did agree with my husband that I won’t be looking at care homes that are farther away. The other agency has an institution near Apeldoorn and one near Nijmegen. I’m not sure the one near Nijmegen was acceptable distance-wise to my husband, but the one near Apeldoorn certainly was.

Both agencies are unlikely to refuse to consider me based on my IQ alone, even though both primarily serve people with intellectual disability. The reason I think so is that both also serve other populations and I have some experience with both agencies.

I do feel all kinds of feelings about the fact that I’ve made up my mind. For one thing, I do feel some form of shame about wishing to live on institution grounds. Back in 2006 and 2007, I wrote agitated articles about the fact that deinstitutionalization was said not to be working by some non-disabled advocates for the disabled, claiming it was poor care, not community living, that was at fault. I meant, for example, the fact that people in the community need more support to go outside if, for example, they aren’t safe in traffic, than they would need in institutions. Then, if that support isn’t provided, it’s no wonder they’d rather go back to living in the woods.

Now one of the reasons I want to go into an institution is the fact that I don’t feel safe leaving my home and the only way of preventing me from leaving it anyway is locking me up. Now tell me again you want the least restrictive environment.

Another feeling has to do with the institution in Apeldoorn specifically. My family home was quite close by that institution. So close in fact that I remember one day when I was eighteen, having an encounter with the police and being asked whether I’d run away from there. I know my parents would feel intense shame if I moved there. Then again, they probably feel intense shame at the fact that I live with people with intellectual disabilities already. Besides, who cares what my parents think?

I do have a few things I need to consider when looking at external agencies. For example, my current agency provides free, pretty much unrestricted WiFi in all rooms of all its homes and it’s available to clients if they wish to use it, which I do. I am not sure the other agencies do, but I will inquire about this when the need arises.

What If I Lose My Care?

Posted on by Astrid

Today’s prompt for the Weekly Prompts Wednesday Challenge is fear. More specifically, the organizers ask us to consider whether we ever worry about the “what if’s” of a situation without looking at the positive present. Fear, for me, takes many forms, including post-traumatic stress, in which I relive the past. However, it also includes worrying about the future indeed.

Specifically, I worry about losing my support. Of course, this is a realistic worry in a sense, in that my one-on-one support has only been approved until sometime in late 2023. However, right now it’s only May 2022 and a lot could happen between now and then.

This worry also takes unrealistic forms. For example, sometimes I’m convinced that the psychologist from the psychiatric hospital who diagnosed me with dependent personality disorder to “prove” that I was misusing care, will find out that I’m in long-term care and will report me for care fraud. If she does and if the authorities follow along with her allegation, I will not just lose my one-on-one, but all my long-term care and will essentially be required to move back into independent living with my husband.

In a sense, the fact that this “what if” is my worst fear, does prove sort of that I do have dependent traits. However, dependent personality disorder or dependency in general is not the same as misusing care. After all, I never disputed my psychologist’s claim that I wished to be cared for. What I disputed, is her claim that this wish is unfounded, in that I don’t really need this care.

In a similar fashion, recently I’ve had “what if’s” in my head about moving to another care home. What if the staff there expect me to be much more independent than I am right now? In a sense, one reason I want to move to another care home is to have a better quality of life, a broader perspective. This may include greater independence. But I don’t want to be forced into it.

I am reminded of a question on a personality test I had to fill out for my autism re-assessment back in 2017. The agree/disagree statement went something like this: “Being left behind alone is my worst fear.” I didn’t know how to answer it back then, as I thought at the time that being in serious pain would be worse, so I ticked the “Disagree” box. Then again, at the time, I hadn’t experienced significant time being left to my own resources in at least nine years. Now, I would certainly tick the “Agree” box even though I know it was a red flag for dependent personality disorder. I don’t care.

What if I lose all my care and am left to my own resources? During the same assessment, I had to answer a question about how difficult it would be to stay on my own for a couple of days. I ticked the “Very difficult” box, not the “Impossible” box that I would have ticked now. Then again, if my husband had stocked up on food and I had my computer and phone with me, would it literally be impossible? Hmmm, well… emotionally, yes, it would be.

The Wednesday HodgePodge (April 27, 2022)

Posted on by Astrid

Hi everyone. It’s King’s Day, so I have the day off from my day activities. This means for me that I don’t have one-on-one support between 1:30 and 4:00PM. This in turn means plenty of time to blog, so I’m aiming for two blog posts today. First, I’m participating in the Wednesday HodgePodge for this week. As the questions went online yesterday and the host participates in the #AtoZChallenge too, her questions are all related to words starting with the letter V. Here goes.

1. What does the word values mean to you personally? Where did your values come from? What are some of the values that have guided you throughout your life?
I discussed some of this yesterday already. Values to me are those abstract qualities that are important in my life. Among my values are authenticity, connection, self-determination and growth.

as for where they came from, I’d like to say I developed them in spite of my upbringing. My parents are very success-minded and more concerned with outward appearance than authenticity. I do think my self-determination comes from my parents though, as they did somewhat raise me to make my own choices.

2. Your favorite vanilla flavored something?
I love everything vanilla really (well, except for vanilla coke, because I can’t stand fizzy drinks), so picking just one is hard. I’m going with ice cream though, yum!

3. What’s something you’ve seen/done recently that you found to be very difficult, very confusing, very helpful, very interesting, or very special. Elaborate.
Deciding to have a discussion with the behavior specialist on the possibility of finding me a more suitable care home. It’s been a very difficult, very confusing time. I thankfully have been able to share my thoughts with most staff, who all have been as supportive as possible.

4. Something you own and love that is violet in color?
I don’t think I own anything that’s specifically violet. I mean, I have a lot of shades of purple in my polymer clay collection, including lilac and translucent lilac, lavender, plum and a couple colors I mixed myself. However, none are exactly violet. I’ve heard it’s one of the harder colors to mix with polymer clay too.

5. Do you have vacation plans on the calendar this summer? Tell us more.
No, I don’t. I was joking around with my husband yesterday about going camping out this summer, but really, we haven’t been on vacation since 2014. I really would like to someday, but I’d go into a hotel then (like we did the last couple of times we went on vacation). My husband is off work for two weeks around my birthday in late June and two more weeks around our wedding anniversary in September. We may plan some extra time together then, but that’s it.

6. Insert your own random thought here.
I just want to share I went on a giant outdoor trampoline this morning. Last year this day, my assigned home staff asked me whether I’d like to go to a playground in a neighboring village that had a giant trampoline and I said yes. I was discussing ways to get out of my room today when I remembered this and so we went again. It was fun!

#WeekendCoffeeShare (April 24, 2022)

Posted on by Astrid

Hi everyone on this last Sunday afternoon of April. Can you believe that we’ll be in May this time next week already? I certainly can’t. The weather’s okay: sunny and about 16°C. I can’t wait for higher temperatures though. Anyway, I’m joining #WeekendCoffeeShare today. I haven’t had my afternoon coffee yet, but am likely going to take a break while writing this post to have it. You can have a cup as well. The staff are also trying to get me to try some type of drink that sounds much like what Americans call Kool-Aid: a powdered substance (sugar-free or so I’m told) that you add to cold water and that then creates the flavor of juice. I’m pretty sure I’d prefer plain water though. Anyway, we have this stuff in the apple-flavored variety, so if you’d like a drink of that, get yourself one. Let’s have a drink and let’s catch up.

If we were having coffee, I’d tell you that this week, I’ve been experiencing quite the rollercoaster ride of emotions. Due to a number of triggers, I got to doubt once again whether I want to stay in my current care home forever and, on Thursday, I more or less decided that I at least want to discuss the possibility of looking for another place. I have no idea whether a voluntary move is even possible and it’s certainly not something I’m looking to decide on quickly. My assigned home staff E-mailed the behavior specialist and manager to see if they can discuss the possibilities and process with me.

If we were having coffee, I’d share that I also experienced quite a bit of emotional dysregulation recently. I am having some major flashbacks and identity confusion. It looks like a new factive alter (an alter based on a real, outside person) may have formed recently.

If we were having coffee, I’d tell you that tomorrow, I’ll finally be discussing lowering my antipsychotic dosage with my nurse practitioner. I’ll most likely take the first step sometime in early May. Even though I’m not feeling at my best right now, I want to move forward with it.

If we were having coffee, I would share that I did enjoy doing some polymer clay work recently. Mostly, I just mixed colors. Like I said before, last week, I got the Fimo Professional true colors six-pack, which comes with a mixing chart, from the day center. I love it! My mother has her birthday on Thursday and I’m fully intending on making her a tulip out of polymer clay with all colors I mixed myself.

If we were having coffee, lastly I’d share that I went to Lobith yesterday. It was good being with my husband once again. We got Domino’s pizza and had orange tompouces (a Dutch-specific pastry) in honor of King’s Day on Wednesday. This morning, my husband went out to the local bakery to buy us croissants. Yum!

How have you been?

Gratitude List (April 23, 2022) #TToT

Posted on by Astrid

Hi everyone on this sunny but windy Saturday afternoon. I’m writing a gratitude post once again. As usual, I’m joining Ten Things of Thankful. Here are the things I’ve been grateful for lately.

1. I am grateful for some lovely colors I’ve been able to mix with the Fimo Professional true colors pack I got from my staff last week. I so far mixed a purplish red, a beautiful green and of course the sky blue I already may’ve posted about last week.

2. I am grateful for Chinese takeout food. We went to get Chinese food last Monday. Originally, I’d gotten a little upset about it, because the staff generally default to satay with noodles. However, I talked it over with my assigned staff and we decided to order chicken with pineapple and sweet and sour sauce too. One of my fellow clients was completely delighted.

3. I am grateful for a text conversation with my sister. She’s still doing well with her pregnancy (she’s nearly 37 weeks along), for which I’m grateful too.

4. I am grateful for the support from my staff. I’ve had a rough couple of days this week, but my staff pulled me through.

5. I am grateful I was able to go on the elliptical for the first time in a long while this week. I went on it for only five minutes or so, but that’s the way to get started.

6. I am grateful I am sometimes able to go for slightly longer walks than just a walk around the day center and for several walks during the day now too.

7. I am grateful I did better than expected at my physical therapy this week.

8. I am grateful my husband is supportive of me even when I’m struggling. I am grateful that my husband is trying to help me come up with solutions to the obstacles I face in life.

9. I am grateful I was able to show a temp staff worker and the intern my polymer clay collection yesterday.

10. I am grateful for soothing playlists of nature sounds and instrumental music on Spotify.

11. I am grateful for sunshine. Despite the fact that it’s chilly and windy, I like it that it’s quite sunny.

12. I am grateful that, despite Easter and all the “bad” food I had over the past couple of weeks, I’m still just plain overweight rather than obese. I am actually at the same weight I was two weeks ago. This is not an excuse to continue having “bad” treats, of course.

That was a better gratitude list than I expected. I initially struggled to get to ten and now I got to twelve, which should be another reason to be grateful, yay!

What are you grateful for?

Five Things I Take for Granted #5Things

Posted on by Astrid

Yesterday, DrTanya’s topic for the #5Things challenge was things you (sometimes) take for granted. I realize I take a lot of things for granted that I really shouldn’t. Here are just five.

1. My intelligence. I don’t take it as much for granted as I used to when in school, but i still feel that I pretty much consider my high IQ a given. Not only that, but I usually find that I’m surprised when others aren’t as intellectually capable as I am. Of course, I don’t mean my fellow clients at the care facility. In fact, they have taught me quite a lesson in humility.

2. My access to medical care. I don’t take my access to long-term care for granted, because that was a fight, but my basic health insurance coverage, I certainly do take for granted. Of course, it is mandatory here in the Netherlands and even those who don’t pay their premiums can’t be refused insurance for at least six months while the insurance company tries to sort things out with them.

3. A roof over my head. I’ve never been without shelter, although in a sense I’ve often felt “homeless”. In the psychiatric hospital, I knew several ppatients who had no home other than the hospital and who were regularly suspended from the ward into the homeless shelter. In this sense, it is really surprising that I never even considered this would happen to me, since I too for several years had no home other than the hospital. I think this signals how secure I felt, in a sense, at the ward I resided at back then.

4. Electricity. I never had to pay my own electricity bills, at least not directly. I mean, even when my husband and I lived together, my husband paid the electricity bills. As a result, I’m hardly aware of how much energy really costs. My husband did tell me how well we did compared to other households and we were always relatively frugal. Even so, it all seems a bit abstract to me.

5. Access to a computer. I don’t take Internet access for granted, but access to a computer, I certainly do. Even in my early days at the locked psychiatric ward, I had my laptop with me and there was no way anyone could take it from me, regardless of what the rules said about only certain electronics being permitted. Thankfully, my nursing staff did understand.

What things do you take for granted?

A Letter to Myself Five Years Ago

Posted on by Astrid

Today, I stumbled upon a journaling prompt that asked me to write a letter to myself five years ago. I’m pretty sure I’ve done something similar to this at least a couple of times before. In fact, when I searched this blog for letters, I saw that I’d written A letter explaining my life at the time in early 2020, a letter to my younger self in general in October of 2018 and even a letter from my (then) future self in 2019.

Those who know the timeline of my life, of course, will not be surprised that I am going to pick this prompt anyway, as the “five years ago” part of the prompt is particularly significant. After all, it was weeks before I’d be kicked out of the mental hospital. I am not going to bore you with a timeline of the past five years in this letter. Instead, I’m trying to provide some new insights.

Raalte, March 27, 2022

Dear Astrid,

It is tempting to start this letter with a cliché, such as, “How are you?” However, I know how you are. You are struggling greatly with self-doubt and uncertainty. Fear of abandonment and attachment loss. You’d rather avoid taking the next step in your life, leaving the familiar behind to step into unfamiliar territory. Even though you’d rather not admit it, your psychologist is right that you’re scared of needing to become independent.

I want to let you know I understand. Independence is scary. The unfamiliar, leaving the psychiatric institution to go live with your husband, is even scarier. I understand you’d rather stay with unsupportive people you know, ie. in the psych hospital, than live with a supportive person, ie. your husband, under circumstances you don’t know.

And, to be honest, if I had a choice back when I was you, I’d not have chosen to live with my husband. The thing is, you don’t have a choice. Not yet. But you will, at some point.

Please, for my sake, hold on for a bit. Do what your psychologist tells you, but also stand up for your right to proper day activities and community support. It will be hard, living in the community with your husband. But things will get easier.

I am writing from a care facility. In 2019, I was approved for long-term care based on blindness. I also have extra one-on-one support. Please don’t tell your psychologist all of this, as she’s going to time travel right ahead to me and make sure my funding gets taken away. This is just between you and me, so that you know things will improve. I know they will get worse first, but please do hold on.

Looking to you, I do see that you struggle to let go of the familiar, even when it isn’t good for you. I sometimes think I face the opposite issue, chasing perfection rather than being content with what I have now. It’s a true balancing act.

I also want to let you know that, as much as you’d like to make your own choices, being allowed to make those choices also can be a burden. The fact that, now, I am free to stay in the care facility for as long as I want or leave when I want, is quite scary, I must admit. In that sense, your psychologist was probably right about my dependent personality disorder features.

I wish I could tell you that your attachment issues would be over by now. They aren’t. I’m still struggling with them, worse even than I was when I was you. However, I do have a supportive mental health treatment team now,for which I’m forever grateful.

In summary, please do believe in yourself. You have every right to feel that you need more support than your psychologist says you need. You just won’t get it yet. Eventually though, you will.

With love,

Your future self

Joy in March

Posted on by Astrid

Hi all. It’s time to reflect on my one word for this year again. I am joining the Word of the Year linky, as well as Lisa’s One Word linky. As those who’ve visited me in January or February will know, my word for this year is JOY.

I had quite a few moments of pure joy this past month. Being able to go outside without a jacket for the first time this year, for example. I loved the beautiful weather! I also loved being able to take beautiful flower photos, especially when I could snap them myself.

In the creative area, I’ve struggled to find pure joy. I mean, I’ve been frustrated by a need to be productive rather than merely enjoy my creative process. As such, I’ve often been tempted to get discouraged and, as a result, give up too quickly. This is the case with my macrame, of course, but also with my polymer clay. When I felt I couldn’t take my work to the next level, I would rather easily let it go completely instead of enjoying the craft.

An area in which I’ve done really well with respect to finding joy, is food. Two weeks ago, the dietitian had me and my staff do a mindful eating exercise. We were given a slice of a tangerine in a bowl and first had to merely look at it while pretending we were astronauts stranded on a faraway planet. Then, we could touch it, smell it, lay it on our lips and finally take a tiny bite. All the while, we had to rate how edible we considered this food, given that this was alien food so we had no idea what it was. Once we had taken the tiny bite, we were supposed to wait for how long it’d take for the taste to completely leave our mouths.

The point of the exercise is, of course, that, as a recovering bulimic, I am still tempted to eat, say, a bag of candies all one after the other without even tasting them. The idea of this exercise is to counter this by actually being aware of every little bite or piece of candy and its feel, taste, etc. I have since been quite able to implement this when having treats.

I also have been able to enjoy my marriage more. I am less plagued by thoughts that my husband will leave me than I was some months and certainly years ago. I try to truly, fully focus on my husband when we talk on the phone in the evening. It’s still hard, because I either am losing my hearing or my headphones are failing. Thankfully, I’m going to Lobith again tomorrow, so will be visiting my husband in real life again. It’s been a while!

How have you been doing with your word for 2022?