#WeekendCoffeeShare (August 14, 2021)

Hi everyone on this beautiful Saturday! The weather is much better than I’d expected yesterday that it’d be. It’s partly cloudy but warm and dry. I like it.

Today, I’m joining #WeekendCoffeeShare again. I just had my afternoon coffee, as seems common when I write these posts. However, I’m pretty sure there’s still some coffee left. Let’s have a drink and let’s catch up.

If we were having coffee, firstly I’d share that I finally went to Lobith last weekend. It was good being there. As I mentioned yesterday, we got pizza (takeout). Other than that, we just chillaxed. Is that even a word?

If we were having coffee, I’d share that I texted my sister on Monday. She’d called me last week because her daughter had been referred to the orthopedic doctor for a leg length difference (her left leg is shorter than her right leg). Apparently, my niece also used her left leg less than her right. My sister wanted to know about the reasons I wear (or should wear) an AFO. I explained about the fact that I had a brain bleed and it’s from that, without mentioning cerebral palsy of course as my parents never mentioned that to me even though I’m pretty sure that’s what it’s called.

As it turns out, my niece has mild hip dysplasia and will be seen by a child orthopedic specialist in Amsterdam someday. Please all pray that the wait won’t be too long. My niece is nearly two-years-old, so it’s pretty late for corrective wear or so I’ve been told.

If we were having coffee, I would tell you that I’ve been doing quite well over the past week. I have mostly felt able to cope with my current situation okay. On Thursday, a fellow client was screaming for almost an hour on end. She does this every once in a while, yet for the first time I didn’t have an impulse to run away. I did get a little threatening towards the client, but the staff were able to calm me down.

If we were having coffee, I’d tell you I have been rather crafty of late again. I didn’t finish many projects, but I did practise polymer clay a lot. I also did make a melt and pour soap and massage oil for my friend who lives a few care homes down the road from me. It was her birthday yesterday. I came by at around 10:30AM to give her her presents and was invited to sit down in her garden for coffee and apple crumble. This was really nice.

If we were having coffee, lastly I’d share that tomorrow, I’m going to Ikea with my one-on-one to buy some new furniture for my room. My dining/crafting table is rather wobbly on its legs, so I want a new one. I also want a new second chair for my staff. My staff currently sit on a very clunky office chair with armrests, which for this reason can’t be pushed under the table. I want one similar to my own chair. I’m pretty sure I’ll be successful at finding both a desk or table and a chair. I’m also going to look at a mini fridge, as you may remember I wanted to buy one for in my room too. I don’t intend on actually buying it at Ikea, but I want to take a look at what it’s like so that I know if I have the right picture in my mind. Then I want to order it online next month when I get some extra money with my benefits.

How have you been?

My Declaration for My 36th Year of Life

Like I mentioned before, I turned 35 on Sunday. A few months back, I had downloaded a birthday journaling tool from the International Association for Journal Writing website. I didn’t really get to journal about any of the prompts in it, but one that stuck out to me is to write your declaration or decision for the upcoming year. It sounds a bit like an affirmation, but I’ll not just repeat it to myself. Rather, in this post, I’ll describe steps I can take to make my declration work.

First, my declaration is: “I will thrive, not just survive.” I will focus the 36th year of my life on improving the quality of my life in some major areas.

I have been debating whether in the long run, I want to stay in my current care home. I’m not yet completely sure, but my aim is to focus on getting as close to my ideal as I can get. However, it may take several more years to find me a more suitable care home, if we can find one at all. This means that I’ll need to focus on improving my quality of life with the resources I have available now.

To make this happen, I’m trying to focus on moving from anxiety and obsessiveness into some level of enjoyment, possibly even happiness. I took the first steps by writing down some things I may want to improve on during my day activities time. For example, I’d like to learn to do some more activities other than blogging and reading by myself, so that when staff leave, I am not completely left out. Today, I tried to work on a bracelet on my own and it worked.

This evening, some kind of staff supporter came round my care home to observe the staff as they care for several clients, including me. She recommended that, when staff leave me, they give me a soft toy to indicate I’m not alone. This also might ease my obsessign over the time they’re going to leave.

I also will be looking into starting some “bigger” project, like a course, again. I don’t think I’ll want to do Open University again, but maybe some hobby-related course.

I’m also thinking of acquiring a small fridge and simple microwave for in my room. That way, I will be able to make soap and body care products in my own room rather than in the overstimulating kitchen, so I should hopefully be able to do more by myself. Then, I’ll hopefully be more satisfied in my activities.

To sum it up, I will try to focus my attention away from ruminating about the past or future and onto enjoying the present. This is probably the hardest part. I am reminded of a Center for Consultation and Expertise case video about a young woman with lots of challenging behavior, for which the staff kept countless checklists of her behaviors etc. They were aiming to manage her behavior, but once they moved away from this and onto looking at how she can have a good day, the behavior also decreased. This might be the case for me too.

Birthday #WotW

Hi all on this beautiful Sunday! It’s already 8:30PM as I start typing my post. It’s my 35th birthday today and I spent most of the week stressing about it and the weekend celebrating it. For this reason, I’m choosing “Birthday” as my word of the week, even though the week is practically over already.

Early in the week, I talked over my birthday with my husband. I had already invited my parents to come over to Lobith today. They hadn’t seen the house since we’d bought it, or the inside of it at all for that matter. My parents need to drive over two hours from their home to Lobith and I’d asked them to drop me off at the care facility in Raalte on their way back. For this reason, I pretty much felt obligated to invite them over for dinner in Lobith. However, this also stressed me out, as it would mean I wouldn’t be in Raalte till like 8PM, by which time my one-on-one would’ve left.

My husband told me I could text them with a time proposal for them to arrive, like early afternoon. That way, they still had some hours to be with us and could still be dropping me off in Raalte and arrive home at a reasonable time. My father doesn’t text and my mother doesn’t drive, so I texted my mother to ask her if this was okay with both of them. It was.

Yesterday, my mother-in-law picked me up in Raalte and we drove to my in-laws’ house. It was good to be there. I in fact had only been there once since the pandemic started. Before then, and especially before I went into long-term care, I’d be at my in-laws’ at least once a week on average. I always loved walking their dog, a black lab called Bloke. My mother-in-law and I walked him again yesterday.

For dinner, we indeed had lasagne and indeed without celery. It was great! I also had a Magnum Billionaire ice cream for dessert.

I also got lovely presents. One of my sisters-in-law had been sent shopping for the largest Rituals gift box she could find. I think it’s amazing!

Today, like I said, my parents visited. I don’t have the greatest relationship with my parents. Like usual, my father kept infodumping on his interests, which he was able to relate to our house in Lobith, since he practically renovated my parents’ house on his own. I could hardly get a word in, but my husband seemed interested. I made some smalltalk with my mother.

The presents I got from my parents, were great though. I had asked them for a surprise box from my favorite beading shop, which happens to be local to them. Aside from that package, I also got another box of jewelry-making supplies they’d found at a thrift store, a turtoise soft toy and fresh cherries and strawberries.

When I returned to the care facility at about 6:15PM, I had dinner: noodles another client and staff had cooked this morning. It was good.

Overall, the day was good. So was the rest of the week for the most part. I seem to slowly be crawling out of the dark pit of emotional dysregulation I was in last week. I’m relatively calm considering the fact that my birthday is a trigger for my C-PTSD.

How was your week?

Word of the Week linky

Looking Forward to Summer

One of Mama Kat’s writing prompts for this week is to share what you’re looking forward to about summer. Summer is my favorite season. I just love the sunshine and warm temperatures, even though I don’t care for temperatures above 30°C. In 2018 and 2019, we had a lot of crazily hot weather, with temps rising to nearly 40°C on several days each year. I don’t like that. However, usually our summers are warm but not hot.

The main thing I look forward to each year, is my birthday. My birthday is this coming Sunday – I’ll be 35. This year, I don’t really have much planned and am a bit apprehensive about it, but I bet I’ll still have fun once it’s there.

On Saturday, my husband and I are going to visit my in-laws. My husband talked about asking his Mom to make lasagne. Without celery, mind you. Yes, she usually puts a small amount of celery in her lasagnes and, while I am not so picky anymore that I’ll fish it out of my serving, I don’t like it at all.

I haven’t asked my mother-in-law for any specific present, so I’m not sure what I’ll get. Last year, she gave me a giant teddy bear.

On Sunday, my actual birthday, my parents will visit me and my husband in Lobith. They haven’t seen the house since we bought it, so my husband will likely have a lot to show them. I’m a little worried about topics to talk about, as I don’t want to cause tension by bringing up my own issues. My staff suggested I tell my parents that we went to the monkey zoo a few weeks ago or the like.

I asked my husband for an outdoors side table for on my balcony. From my parents, I asked for jewelry-making supplies. I really hope my creative juices will be flowing again soon.

I will probably return to the care facility by about 6PM. During our evening coffee break, I will treat my fellow clients at the care home to custard cupcakes or nut bars (those who can eat those).

As for my plans for the rest of the summer, I am hoping to visit some new places, like the local large playground. Aside from social distancing, most restrictions due to the pandemic will be lifted by this Saturday (hopefully not to return again by the fall). I also hope to go on many walks, as well as sit on my balcony some more.

What are you looking forward to this summer?

Mama’s Losin’ It

Today Is Tuesday, June 8

I really want to write, but I’m feeling pretty uninspired. I already looked through my collections of journaling prompts, of which I have many. However, even though a few prompts spoke to me, I just couldn’t get myself to put fingers to keyboard and actually write. Until now, that is. Instead of writing an actually meaningful post, I’m just going to freewrite.

Today I got my original Braille display, the one with the water damage, back. The technician also explained why this model can’t handle even a little water on it even though the old model, the one that got the cup of tea over it seven years ago, could. This model’s Braille cells are somehow covered, so if water enters them, there’s no way it’ll get out. He didn’t explain the point of creating cells like this, I mean, what would make them better than cells that haven’t been covered like the ones in the old model. I think it might even be an effort to make the Braille displays not last as long, but of course the technician wouldn’t say so.

In the afternoon, my mother-in-law visited me. We drove to a relatively nearby forest and went for a short walk. Then we had coffee and apple pie. We also drove by a supermarket, where I got blueberries and fruit gums. The fruit gums, I already consumed.

Both my mother-in-law and my husband have been asking me what I want for my birthday, which is on the 27th. I have asked my parents to order from a specific jewelry-making store which is local to them. For my husband and mother-in-law, I really don’t know what to ask for. I mean, I’ve been tempted to ask for the interactive cat my mother-in-law originally wanted to buy me last year. Then again, that thing is over a hundred euros.

In the evening, I did a little more walking and had coffee. I more than reached my water intake goal for the day. I use the Water Reminder app on my iPhone again. It’s a pretty good way of keeping track of my fluid intake, as it also allows me to track other beverages. And just so you know, yes, it actually takes away water when you drink alcohol. That makes me believe its calculation of amount of water in beverages is pretty accurate.

I also read my Bible again. I decided to pick it up in Genesis where I left off when starting to read Daniel on Sunday. I don’t expect to be reading all the boring Old Testament stuff, but for now I’m at least sticking to a Bible reading habit.

And a writing habit. See? I can really make myself create a blog post if I just want it badly enough. And I do, since WordPress is now keeping track of my blogging streaks. Yay me!

Truthful Tuesday: Birthdays

Hi all! It’s Tuesday and I’m feeling a little better still than I was yesterday. I’m still having a cold, but it’s mostly manageable now.

Today I’m participating in Truthful Tuesday. This week’s question is: as you have gotten older, do you still celebrate your birthday, or has it become just another day to you?

The presumption behind this question is that, as we get older and the effects of aging become less positive than they were when we were a child or teen, some people no longer appreciate their birthdays.

I find, and maybe this will change when I get even older, that the opposite is true. I will be 35 in June and have found that, with increased age, does come increased wisdom. I am probably not old enough yet to start feeling depressed about my life’s regrets. That doesn’t mean I don’t have many, but they don’t weigh me down that much as of yet. I hope that won’t come either, but I’m pretty sure it will.

In contrast, when I was a child, I feared growing up. My birthdays were fun because of the gifts I got, but that’s about it. I never felt that flash of excitement that some children and teens feel as they get older. No, not even (or especially not) when I turned twelve, sixteen or eighteen.

When I turned 30 in 2016, I did have some mixed feelings. I was excited to be allowed into the over-30s groups on Facebook but also felt that, at my age, I could no longer have emotional outbursts. I still did. That latter feeling subsided over time though as I realized a neurotypical ten-year-old wouldn’t have meltdowns like mine.

My birthday has always been an exciting yet stressful event. Now though, it’s more exciting than stressful usually. My parents don’t make a point of telling me to act grown-up anymore. For this reason, them visiting me for this occasion – usually the only time a year I see them in real life -, is mostly fun.

I do indeed still celebrate my birthday. Months in advance, my husband starts asking me what I want for my birthday. It’s also a bit of a tradition that he takes the week around my birthday off from work.

Most years, I spread out my birthday party over several days, as I don’t want to have the house full of visitors. Last year, the visiting restrictions due to COVID were lifted the day before my birthday. This meant that my parents could actually take me out for a ride in their car rather than having to sit in the care facility’s garden for the entirety of the visit.

My mother-in-law visited me the day before and brought me the giant bear soft toy. That’s another thing that makes birthdays fun: I love getting gifts. Of course, I can buy myself the things I really want too, but I actually like the fact that people give me something I wouldn’t buy myself.

Maybe, now that I’m inn my thirties and don’t have to act grown-up, as I’m on disability and in long-term care, I can finally feel the excitement of being a kid at heart.

What a Day, What a Year! #SoCS

Today I got my COVID test results. Thankfully, I’m negative. Like I mentioned yesterday, I went into room-based isolation with cold symptoms and a sore throat yesterday morning. That day in isolation was hard. I constantly imagined testing positive for COVID. That’d mean at least five more days in quarantine. It’d also mean I would have to alert my nurse practitioner and the facility’s behavior specialist, both of whom I’d seen on Thursday.

I felt intense guilt about possibly having infected my staff too. After all, when I was still only experiencing a sore throat, the staff tried to reassure me that I couldn’t possibly have COVID. It may be true – I had my second shot of the vaccine last week -, but I couldn’t be sure.

Can you imagine that, a year ago, we were just at the beginning of this pandemic? On March 12, 2020, the first local case of COVID-19 had been discovered. On March 13, the community service event that was due to take place at my day center as part of a countrywide volunteering initiative, had been canceled. The day center closed five days later, on March 18.

I hadn’t seen my husband since the first weekend of March I think and wasn’t going to see him again till sometime in late May. After all, at first visiting the care facility was discouraged, then it was completely prohibited except in rare cases when a family member was essential for a client’s care. My husband wasn’t.

I am so glad that now, during the second lockdown, care facilities remain open to visitors except when there’s an outbreak of COVID or suspected COVID, as in my case yesterday. I am so glad one of my fellow clients, who had her birthday on Tuesday, may receive a visit from her family tomorrow.

I had my own birthday on June 27, one day after the final restrictions to visiting were lifted, provided there’s no countrywide lockdown or COVID outbreak. Though we’re in a countrywide lockdown again, the lockdown policy remains that care facilities can be open. I credit the prime minister’s late mother, who died in a nursing home during the first lockdown or so I believe.

This post was written for today’s Stream of Consciousness Saturday (#SoCS) prompt of day/week/month/year.

A Favorite Childhood Gift

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

#WeekendCoffeeShare (June 27, 2020)

Happy late Saturday evening everyone! Welcome to another edition of the #WeekendCoffeeShare. Today is my birthday. I think I still have tompouces in the fridge, so grab a cup of coffee, tea or your favorite cold drink and let’s catch up.

If we were having coffee, I would share that I was stressed out all week about my parents visiting yesterday. As regular readers of my blog may know, my parents are big on independence and in denial of most of my disabilities. They don’t think I should be in a care facility. Like I said yesterday though, they weren’t overly judgmental. My father made a rather bad pun on the facility’s name and my mother asked whether no-one had taught my nonspeaking fellow clients to talk, but that was about it.

If we were having coffee, I would tell you about all the lovely presents I got for my birthday. My parents gave me a drinking bottle with fruit infusion filter. I’d had it on my wishlist for years and am now loving making fruit-infused water. They also gave me a spiky or hedgehog ball. My father said it looked like a virus and my husband joked that they’d gifted me corona. Lastly, they gave me some punches, which I can use in cardmaking or other craft projects. They got these as well as the spiky ball at the thrift store.

My husband gave me a sturdy bookcase for my iPhone. It’s supposed to protect your phone against dropping from 2 meters. I’d rather not try it out though.

Lastly, my mother-in-law gifted me this giant teddy bear! It’s 1.60m tall, which is even taller than I am. I love it!

Giant Bear

I’m still not sure what to call it. I initially called it just Giant Bear, because my big panda was called Big Bear and my not even that little bear stuffy was called Little Bear. Or something. I can’t remember, honestly. Then I figured I should be calling it Joenie, which is my nickname for my husband. My husband said to call it Baloo after the bear in Jungle Book. I guess I’ll call it whatever strikes my fancy at that moment. Rainbow/Sofie, the unicorn, also has two names, after all.

If we were having coffee, I would tell you I ate some delicious Domino’s pizza this evening. My husband and I had it delivered to the care facility. I had the spicy chicken pizza and so did he, as my husband usually ends up liking my pizza more if we each order something different. I loved it! Then I had some ice cream for dessert. I got a nice present from the care facility too: a Domino’s gift voucher. I already have a reputation for eating lots of yummy food, even though today was the first time I’d ordered Domino’s since coming to the care facility last September.

If we were having coffee, I would tell you that next week, I have a meeting with my community psychiatric nurse and nurse practitioner from mental health. We’re going to discuss my possibly getting EMDR treatment for some of my traumatic experiences. Now that my visit with my parents went well, I feel slightly guilty about considering some of my experiences with them traumatic, but well.

If we were having coffee, I would report on my steps as usual. This week so far, I reached just over 60K. I managed 69K last week and am doubtful I’ll reach that this week, as I’m probably going to have a lazy Sunday tomorrow.

How are you all doing?

Not Their Baby Anymore

Tomorrow is my 34th birthday. My parents came for a visit today. My mother, for the first time in so many years, didn’t openly reminisce about the time I was a baby. In fact, she seemed rather relaxed.

I was born three months prematurely. My due date would’ve been September 29, 1986 instead of June 27. Most if not all of my multiple disabilities are the direct result of my premature birth. I mean, it’s controversial to say this about autism, as most people in the autistic community claim it’s purely genetic. I have some genetic risk factors too, in that both my father and paternal grandfather are/were of the broader autistic phenotype. We can never be sure though how much my genetics contributed and how much the brain bleed and subsequent hydrocephalus I suffered did. In any case, my blindness and mild cerebral palsy are both due to my premature birth. My blindness is caused by an eye condition called retinopathy of prematurity and my CP is due to the aforementioned brain bleed.

As much as I sometimes seek to discuss my early childhood with my parents, I’m happy neither brought up the topic this year. They were in some rather brutal ways confronted with my current life. After all, due to the COVID-19 measures, I couldn’t be at my husband’s home when they visited. This was one of the first times my parents actually visited me in a care facility. When I was in the psychiatric hospital, either they’d visit me at my student apartment or later at my and my husband’s home. I think there were a few years, probably 2010 and 2011, when I had neither, but they always managed to take me out to some restaurant or something then. They were probably confronted with care facilities a few more times, but not in the past eight or so years.

A fellow resident tried to hug my mother when she came in. She didn’t comment. She did ask at some point whether my fellow clients can talk and I honestly replied that most can’t. When I told her there are clients in other homes I can talk to, she did ask why I didn’t live there then. I just said I didn’t have the right care profile for those homes or there was no available room.

Honestly, I’m totally relieved that my parents didnt’criticize me. I know they don’t agree with my being in a care facility. Still, they probably realized I’m not their little baby anymore.

Written for Fandango’s One-Word Challenge (#FOWC): baby.