Growing Up Emotionally

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Today’s Ragtag Daily Prompt is “when I grow up”. I’m going to be forty next year, so by most standards, I’m considered to have “grown up”. Only by the model that includes life experiences such as working, buying a house, etc., I’m not necessarily truly an adult. After all, though my spouse and I own a house together, buying it was mostly done out of necessity so that I could go into long-term care. I’ve never worked, not even had a side job as a teen.

That being said, in many respects I’m still young at heart. I know everyone my age says so to be cool, but I don’t mean it in a positive way. Rather, I mean it to say that emotionally I’m very vulnerable. Like I shared when discussing emotional development as it relates to intellectual disability (and autism) in 2023, on many subscales of the emotional development assessment used here in the Netherlands, I’m considered an infant or toddler. That doesn’t mean I can’t grow.

When I grow emotionally, I’d like to become more regulated. My psychiatrist used to say that I’d likely experience less emotional dysregulation after age thirty. I’m not sure that’s true in my case. In fact, I’m pretty sure it’s not true. The frequency and severity of my meltdowns has increased, though the duration has lessened significantly. I no longer experience outbursts that last all day. That, I mostly attribute to my staff’s proactive attitude.

I’d also like to be more independent. The problem with this, however, is the fact that my energy level varies significantly from day to day. Because of this, I hardly ever progress in my independence even though I might be able to. The reason is the fact that, if I do something independently once, my staff and others are going to expect me to always be able to do it.

Same for adaptability and emotional regulation: my abilities vary from day to day and sometimes hour to hour. I, for this reason, struggle to really make progress. That doesn’t mean I don’t want to.

Echolalia

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Hi all! I’m officially joining the #JusJoJan fun today, because the prompt inspired me. It’s “echo”.

There’s a resident at my home who repeats everything she hears. I was actually confused when I first got introduced here, because this resident has a very clear, high-pitched sing-song voice reminiscent of staff. When I asked why the staff were saying everything twice, one of them explained that this person wasn’t a staff but a client and she experiences echolalia.

I immediately assumed she’s autistic, but she isn’t. She has Sanfilippo Syndrome, a rare (albeit relatively common in the Netherlands) metabolic disease that leads to cognitive decline. Apparently, this person’s cognitive decline is so advanced that she doesn’t recognize anyone, except for sometimes her parents.

It’s interesting to note that, when I first got here, she always only echoed the staff, not the other residents. Now she regularly echoes me and sometimes other clients too. She still doesn’t repeat it when someone tells her off for talking too much. I think that’s funny.

I, being autistic, sometimes experience echolalia too. When under a lot of stress, I engage in immediate echolalia, like this other client: I repeat what has just been said. Sometimes, I also experience delayed echolalia. When this happens, I notably echo my fellow clients.

When I’m in a mentally good place, I sometimes feel guilty for it, because it feels like I’m appropriating them. That’s not my intention though and, well, I’m not echoing on purpose anyway.

Kymber’s Get to Know You (January 9, 2025)

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Hi everyone. I have been quite tired over the past few days, so didn’t do much writing. I’m still proud to say that this is my sixth blog post in January. Considering that some months in 2024, I only published five posts total, this is good.

Anyway, regular readers may remember me participating in the Wednesday Hodgepodge for a while. I stopped doing that, because I didn’t like it that the overwhelming majority of participants’ posts were heavily Christian-based. Now though, I seem to have found something to replace it with: Kymber’s Get to Know You. Here are the questions for this week and my answers.

1. What is the most memorable activity you did with your family as a child?
Not an activity we did as a whole family, but play-based learning with my parents comes to mind. For example, my father taught me to calculate squares using computer chips he’d been removing out of the devices himself. I also remember us looking at maps together. My mother also made little books in large print for me to learn to read when I was about four. Here in the Netherlands, children don’t usually learn to read until they’re six, but I was a precocious learner. My parents will probably be proud to see me list these “intellectual” activities.

2. What quality do you appreciate most in a friend?
Acceptance. I want to be myself with a friend and if they aren’t willing to accept that, fine but they aren’t my friend. I will also accept my friends for who they are. I don’t mean that mutual annoyances can’t happen. They happen between me and my spouse, who I consider to be my best friend, all the time. However, when it comes down to it, we accept each other for who we are.

3. What is one characteristic you received from your parents you want to keep and one you wish you could change?
My mother jokes that I inherited all my positive qualities from my father and all my negative ones from her. I was almost going along with it, because indeed the first positive characteristic I thought of comes from my Dad and the first negative one from my Mom. However, I’d like to boost my Mom’s self-esteem a bit (should she ever read this) and lessen my Dad’s. Therefore, I’d like to keep my Mom’s creativity and get rid of my Dad’s snobbishness.

Reading, Watching and Listening Lately (January 6, 2025)

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Hi everyone. Today I’m sharing what I’ve been reading, watching and listening to lately. I’m joining It’s Monday! What Are You Reading? (#IMWAYR). Most of this post will be dedicated to books, but I’m also sharing a little of my recent travels through YouTube and podcasts.

Reading

I saw the book Camp Damascus by Chuck Tingle recommended online when someone asked for queer autistic characters in young adult/new adult lit. It’s horror, which I rarely read, but for some reason its description appealed to me. I am surprised to say that I’m already 25% in even though for me it’s a pretty long book. One thing that already disappoints me a bit is that, 25% in, I still seem not to have a clue of what happens.

Other than that, I’m mostly just paging through my over a dozen collections of smoothie recipes. I will be buying new ingredients tomorrow.

I don’t do these posts every week, so for my recently finished reads, I’m sharing a book I finished just before Christmas: Murder on Christmas Eve (A Dodo Dorchester Mystery, #6) by Ann Sutton. It is a cozy mystery set in early twentieth century England. I didn’t initially realize it was historic and I hadn’t read the other books in the series, so it was a bit hard to get into, but it was an intriguing story.

I still have half a dozen books I haven’t finished but intend to finish… someday. That being said, I honestly have no idea what I’ll be reading next.

Watching

Yesterday, I watched a YouTube video from an American guy who lives in the Netherlands, sharing ten things (American) tourists should not do when visiting Holland. Oops, that’s one of them: calling our country “Holland”.

I also have been watching some snippets of 3FM Serious Request’s feature on metabolic diseases. 3FM is a Dutch public radio station and Serious Request is an annual fundraiser event, this year for MetaKids, a Dutch foundation that funds research into metabolic diseases. Since one of my fellow residents has Sanfilippo Syndrome, which is a metabolic disease, I was intrigued to learn more. I didn’t donate though.

Listening

On New Year’s, I watched a fascinating episode of the Real Survival Stories podcast on a paraglider who landed in a storm and was pulled up to 10,000m into the sky. It was truly chilling!

Now I realize most of the things I enjoyed lately are on the dark side. I don’t care though. I do usually hope for good endings. If you’ve read Camp Damascus, please don’t spoil it for me.

Health Anxiety

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Hi everyone. Today in her Sunday Poser, Sadje asks us whether we deal with health anxiety. Health anxiety is excessive worry about one’s physical health. People who suffer from it, interpret normal bodily sensations or minor ailments as a sign of serious illness, such as cancer. There are people with health anxiety who are constantly running to the doctor, but also those who bury their heads in the sand and worry in silence.

As for whether I myself suffer from health anxiety, I used to suffer pretty badly. I could be a mix of the head in the sand type and the running to the doctor type. When I was nineteen, I remember having pretty bad anxiety one night and concluding I had some serious thing going on. My sister was in my room trying to comfort me, but not being able to figure out why I was having the symptoms I was having (most likely, a panic attack), drove me crazy. I don’t know why I didn’t peruse Dr. Google, but I didn’t. The next day, I called my GP, who wasn’t fully comforted either, particularly when she learned I have hydrocephalus. Long story short, three weeks later I got the all-clear on my shunt from a neurologist, but I never figured out what those weird symptoms were.

I also had bad health anxiety when living on my own in 2007. I, being the type for objectivity, at one point purchased a talking thermometer, so that at least I could take my body temp. After all, my parents used to have a rule about staying home from school: if you don’t run a fever, you aren’t sick.

Thankfully, most of my health anxiety went away once I was admitted to the psych hospital. I still worried about my health sometimes, but it wasn’t significantly distressing. My health anxiety didn’t return once I was kicked out of the hospital to live semi-independently with my spouse.

One thing I struggle with, is knowing when a symptom is significant enough to go to the doctor for or even when it’s abnormal. I for this reason can go months with a symptom before I actually ask my staff to call the doctor.

Since owning an Apple Watch, I don’t freak out when its values are abnormal. Like, back when I first used it in 2022, my oxygen levels often were way below the minimum normal value of 95%. Now they are usually high enough and I have had them checked with an actual oximeter several times. I might’ve had sleep apnea back then, but then again my night-time breathing rate according to my Apple Watch is usually higher than average, not lower. In any case, I am not one to consult my doctor just because my smartwatch says I might be ill. Maybe that’s burying my head in the sand, but I do feel fine generally.

Behind My Anger #SoCS

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SoCS Badge 2019-2020

Many people think I’m angry a lot. It was written in my reports from psychologists as early as age 8 and maybe even younger. I do sound angry sometimes, but behind that anger are many other emotions. I mean, I rarely feel genuinely angry, but I express many strong emotions as rage, irritability or other forms of anger.

I don’t blame other people for not seeing it. I see anger a lot when others claim there isn’t any. But it’s hard for me to look beyond (my perceptions of) people’s surface expressions. When it feels as though an angry person stands in front of me, or worse yet, behind me, I shrink inwardly, but react outwardly. This is really hard for others to comprehend, but I have the same feelings as everybody else. So do you, even if it appears I only see anger. We all need to look beyond what seems to be in front of us.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “in front” and/or “behind”. Linda’s also doing #JusJoJan again, which stands for Just Jot It! January. I will write a post when the prompt appeals to me, but I do really hope to be blogging regularly this month (and the rest of 2025).

#WeekendCoffeeShare (January 3, 2025)

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Hi everyone. I’m joining #WeekendCoffeeShare today. I usually do this on Saturdays, but I want to do it today. It’s 8:30PM, so I’ve had my last cup of coffee and soft drink for the day, but as usual, you can always grab a cup of your favorite beverage. Let’s have a drink and let’s catch up.

If we were having coffee, first I’d talk about the weather. New Year’s was windy and rainy. Today, we got a bit of snow. Let’s just say I can’t wait for spring.

If we were having coffee, I’d then tell you that, due to the weather, I didn’t meet my movement goals most of this week. That is, over New Year’s, I didn’t feel safe going outside because of the fireworks. My monthly challenge on my Apple Watch is to burn 335 active calories a day 14 times. This should be easy, but I’m honestly a bit discouraged right now.

If we were having coffee, I’d share that, on Monday, I tried to make a smoothie only to discover that tons of black critters had crawled into my blender. My outdoor cushions had been next to the blender and that’s where they came from. The cushions were horribly moldy too. Needless to say I threw out the cushions. I could’ve washed the blender, but the idea of these critters ever having been in it, creeped me out, so I discarded it too.

Thankfully, when I explained the situation on the phone, my spouse offered me a blender that had been sitting in our house since my spouse’s birthday in 2023, because it was a gift from me. Apparently my spouse hardly ever uses it. It’s a lot smaller than my old blender, so no more smoothies for the entire home. It works okay though, as I made my first smoothie in it yesterday.

If we were having coffee, I’d share that my New Year’s was okay. I had originally planned to stay at the institution, but ended up spending the night with my spouse at our house. For the most part, we just chilled and watched a little TV. We ate a delicious pasta bake for dinner. We hardly made it to midnight before feeling too tired to remain awake. Unfortunately, the fireworks were really bad, so it was 2AM before we properly slept. Neither of us usually sleeps well when we’re together anyway. I left by 2PM on New Year’s day.

That evening, the staff here at the institution had ordered salads, baguettes and various kinds of meat. It was good. I also had a cup of ice cream topped with loads of whipped cream for dessert.

If we were having coffee, lastly I’d share that, like I suspected, I gained weight over the holidays and am now three pounds over my upper goal weight. I’m pretty sure though that, if I gained three pounds in two weeks, I can lose at least part of the weight again before my dietitian’s appt on the 15th. I am actually considering stopping seeing the dietitian, because I know full well what to do to remain somewhat healthy and I don’t think the dietitian helps keep me accountable. I don’t want to ditch my goal (eh, hope) of being more health-conscious, but I honestly don’t see how the dietitian helps me with this. I’ll give it some more thought and may use my weight on the 15th (ie. a factor of how successful I am at actually following through on what I know to be healthy) as a factor in my decision.

My Hopes for 2025

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Hi everyone. It’s January 1 and I am absolutely not motivated to set resolutions or goals for the new year. In fact, I think calling them “hopes” like I usually do, isn’t doing the trick either. I’m too scared that voicing my hopes is tempting fate. However, I’m going to push through anyway and write them down.

1. Be more aware of my eating habits and eat more healthily. I am still within the agreed-upon weight range for my dietitian (or was when I last weighed myself, which admittedly was before Christmas), but barely so and I’d really like to lose some weight. More importantly though, I need to make sure I’m making healthier food choices.

2. Find a physical activity other than walking that I will be able to do regularly for a longer period of time. I tried swimming, but it’s rare that a staff who can meet my needs is assigned to me during the time the pool is open for me. I’m thinking of going to a gym.

3. Give movement therapy (Sherborne) a fair chance and make some progress on it. I do think I gave play therapy a good enough chance, especially since my first impression of the therapist was already quite bad and I went nine times or so. However, I really do think I need to step out of my comfort zone in movement therapy if I want to make it work.

4. Further taper my medication. This needs a caveat though, since I need to really be aware of whether decreasing my dosage is a wise decision and, if not, what the alternatives are.

5. Remain relatively stable mental health-wise. I have been doing okay over the past month or so and my staff say that certainly after my last med taper, I’ve been relatively stable. Like I said, I’d really like to taper my medication even further, but it’s a priority for me to stay within an acceptable range with respect to mental stability. Although I feel that meds are for me, not anyone else, I don’t want to become an unmanageable monster.

6. Work on self-improvement in the areas of communication, mindfulness and distress tolerance. This is a biggie, but I feel that I really need to work on better interpersonal skills.

7. Broaden and deepen my creativity. I may want to explore hobbies that I have tried before but thought unsuitable, such as jewelry-making. I also hope to develop my skills further in the hobbies I already pursue, such as polymer clay, smoothie making, etc. I hope to do more baking and cooking too.

8. Blog and write more regularly. I wrote 110 posts over 2024, which is a big disappointment for me. I hope I’ll be able to blog more often. I also hope to write more regularly in general.

9. Stay at this care home. I’m really hoping that I won’t make another stupid mistake and end up moving again, either because the powers-that-be think that I want to or because the staff consider me unmanageable.

What do you hope to achieve in 2025?

2024: The Year in Review

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Hi everyone. It’s the last day of the year and this means doing a review of the past year. I realize I wrote about my 2024 on Saturday already, but I’d like to do a proper review today.

The year started out pretty tough, because I had some issues with my assigned staff, now this side of the home’s support coordinator. I won’t go into detail, but let’s just say he isn’t the most socially adept and his attempts at gaining my trust went horribly wrong. This is the reason he isn’t the one making decisions for me or having meetings with me about my care.

I have had some issues with getting proper care over the past year in general, like when the behavior specialist decided to do the minute-by-minute compensatory system when I was in distress during my time without one-on-one. The reason was the idea that I would need more and more care if they didn’t do this. That is, that’s what my then support coordinator said, but I figured out that the actual reason was the idea that I’d purposefully work myself up in order to get more care. This is simply not true: I pretty regularly tell my staff that they can leave early if I’m doing well, but I just can’t plan my distress to suit my one-on-one hours.

Over the summer, I had some issues with the fact that there were especially many unfamiliar temp workers assigned to my one-on-one care. I mean, I realize that there are more temp workers over the summer when the regular staff are on vacation, but the fact that most of them were assigned to me, frustrated me.

There have been other frustrating aspects to my care, but I’m so glad my support coordinator and two new assigned staff are trying to build a trust-based relationship with me rather than telling me I’m just a negative nagger.

In other departments, the year was a mixed bag too. I definitely didn’t do as well as I’d hoped with my movement, crafting or blogging. In fact, I honestly did worse than I did last year. I did, however, try cooking and baking more often.

Another positive is the fact that I am fully off my PRN tranquilizer and my topiramate and am now on a significantly lower dosage of aripiprazole (my antipsychotic) than I was last year. I also started therapy. First, I tried play therapy, but that wasn’t a success from the get-go. I now am in the early stages of movement therapy based on the Sherborne method.

In general, when I look back at 2024 and compare it to 2023, I can see how in some ways I did worse this year. This feels a bit disappointing and I’m not sure why it is. It may be because of my having significantly tapered my medication. I hope that whether this is the case or not, it won’t get worse in 2025.

That being said, I do feel that I’m starting to develop a tiny bit of trust in my staff and that wasn’t the case in 2023 at all. Here’s hoping I can continue on this journey next year.

This year was a true year of ups and downs in other areas, such as my marriage, too. Thankfully, I’m feeling optimistic that my spouse and I will make it through stronger. We’re both confident that we’ll always be soulmates!

In the health department, I did okay. I gained a little weight, but not so much that it’s worrisome to my dietitian. I remember telling her recently that I hadn’t gained weight last year over the holiday season, but I’m pretty sure that wasn’t correct. As such, I hope that, if I’ve gained weight over this holiday season, I can lose it again.

One last positive: I finally got suitable orthopedic shoes, yay! They still get damage often due to my drop foot, but thankfully not to the point that they can’t be fixed.

Gratitude List (December 29, 2024) #TToT

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Hi everyone. I’m doing a gratitude list again. As usual, I’m linking it up with Ten Things of Thankful. Here goes.

1. A nice Christmas-themed walk around institution grounds on Tuesday. We were able to see lights, listen to a barrel organ playing festive jingles and at the end of the walk, we could do some crafty things like decorate a clementine with cloves and create a paper rose.

2. The fact that the labeling tape I ordered online early in the week, actually arrived on time for my visit to my in-laws on Christmas (where I’d had it delivered) and the tape also fit into my home’s label printer. I as a result was finally able to label my new clay.

3. Fries. I always have to include several food-theemd thankfuls, don’t I? On Tuesday, we had French fries.

4. Seeing my spouse and in-laws on Christmas.

5. Making salad on Boxing Day. A student staff’s mother had made homemade Turkish-style meatballs called köfte.

6. Being able to play DJ at the home’s dance party on Friday. Another student staff had brought his large Bluetooth-enabled speaker and I asked him if I’d be allowed to connect it to my iPhone and be the DJ. That was so cool! At first, I played ABBA like I’d requested the staff do the previous time we had a party. Then I put on a random EDM playlist, but that wasn’t well-received, so I switched to my own personal playlist of Dutch and dialect songs.

7. Getting in lots of exercise minutes today. I took three longer walks.

8. The fact that my support coordinator reassured me that, pending my one-on-one renewal request, things will stay the same for now and no hours will be cut. Officially, my one-on-one needs renewing by January 1 and we haven’t heard anything yet. I’m still struggling with my current hours particularly in the evenings, so I really hope that things won’t get worse. We’ll see.

9. Meeting up with my spouse again yesterday. And looking forward to going to our house over New Year’s.

10. The fact that the festive season is almost over. I can’t stand all the chaos.