Early Experiences With Medical and Dental Care

Today’s topic for Throwback Thursday is doctors’ or dental visits. I have many early memories of medical care, probably because I, being multiply-disabled, often had to visit the doctor. Until I was about nine, that is, when my parents, my sister and I moved across the country and my parents stopped taking me to doctors altogether except when I had everyday ailments.

An interesting question Lauren asks in her original post, is whether your parents were scared of doctors or dentists. Well, truthfully, yes, mine are. My mother had her own fair share of traumatic experiences involving doctors, among which a situation that would’ve been considered medical malpractice had it been in the U.S. surrounding my premature birth. My father, I don’t know. He probably feels he’s smarter than most doctors and hence considers spending time with them a waste of his own time.

All that being said, up till the age of about nine, I was taken for medical care when I needed it. I don’t think I was really taken for health checks except those part of preemie follow-up. I don’t remember most of these visits, except the ones to the eye doctor. My eye doctor was always, and I mean literally always running at least two hours behind schedule. Waiting in the waiting room for her was the worst. Well, no, the second worst: the absolute worst was waiting for her to come back after she’d put dilation drops into my eyes.

I don’t think I was very afraid of needles as a child. In fact, when I needed to be put under general anesthesia for my various surgeries, as soon as my parents allowed me to make the decision myself between the anesthetic mask and the injection, I always chose the injection. I remember being horribly afraid that I would get the mask when I had to have cataract surgery in 2013, even though I’m not even sure they do this on adults.

One thing I did always remember was that the hospital staff would stick me in my toes rather than my fingers for finger pricks, because the nerves in my fingers should not be damaged because of the fact that I read Braille. I had to have a finger prick last year and told the medical assistant that she was supposed to stick the needle in my toe. She explained that she couldn’t, so I reluctantly agreed to have her stick the needle into the side of a finger I hardly use for reading.

As for dental care, I think I did have proper dental check-ups when I was young. I didn’t have problems with my teeth until I was about eleven and fell and a bit of one of my front teeth broke off. That was the first time I started worrying about my teeth. I did need braces, which was quite an ordeal as the orthodontist never explained properly what I could and couldn’t eat, so there were always parts of my braces getting loose.

I am not very scared of doctors. Dentists though, well, it’s complicated. I am scared of dentists, but also scared of losing my teeth. This has led to some rather odd situations in which I sought out dental care that I might not have needed and didn’t seek out dental care that I did need. Thankfully, now that I live in long-term care, I do get regular dental check-ups and the staff and dentist do try their best to make me feel as comfortable as possible.

Being God’s Beloved Child As an Enneagram Type Four

Today, I read some about the Enneagram again. As regular readers of this blog will know, I’m a type Four. Type Fours’ core motivation is to be fully understood as their unique and authentic selves. As such, Fours often focus on their being different from other people in some fundamental way. I am no different (pun intended) in this respect.

When I was in the early days of my psych hospital stay, my parents came to talk to the psychiatrist. They told him that, ever since I’d realized I am different because of my blindness at roughly age seven, I had tried to make it look like I was different in a ton of other ways. For instance, I identified as autistic (with which I was eventually diagnosed), thought as a teen that I was a lesbian (I am not), etc. Indeed, identity confusion was quite a common experience for me. According to my parents, this was all because I refused to accept the fact that I am blind, rather than because, well, I felt different in some rather interesting, somewhat impalpable ways.

Today, as I read the Day 1 section of The Enneagram Type 4 by Beth McCord, I realized I’ve always focused my attention on how I am not just essentially different from everyone else, but in some fundamental way more defective than everyone else. In reality, this is not true.

I am reminded in this respect of a sermon or something I once heard about a king having two daughters who both got lost in a shipwreck and stranded with farmers or something. Years later, the king found out that his daughters were still alive and he sent out some men to track them down. One daughter believed she was the king’s daughter, while the other didn’t. To whom does it matter? Of course, to the one who believes. This is probably what it is like to be a child of God: we are all children of God, but only those who believe it will delight in His kingdom. I find this comforting to my non-believer friends, realizing that God does not somehow condemn those people or something. Of course, there is the difference that God is all-knowing and all-powerful, so He could’ve made everyone believe.

However, my point is that there is nothing that makes me less of a child of God because of who I am or what I do. I am also not more defective than anyone else based on any of my differences, be it my autism or my blindness or whatever. Neurodiversity and disability rights are clear on that. No matter how fundamentally different I feel as an enneagram type Four, or as an autistic, multiply-disabled trauma survivor, or as just plain ol’ me, I am still God’s beloved child and I do not need to – cannot even – attempt to earn that status any more. After all, Jesus Christ purchased that status for me on the cross.

I am linking this post up with Inspire Me Monday.

#WeekendCoffeeShare (May 7, 2022)

Hi everyone on this Saturday evening. It’s rather late for coffee in my corner of the world, but I’m joining #WeekendCoffeeShare anyway. I don’t know whether we still have soft drinks in the fridge, as I don’t really care for them. My dietitian said that, if I don’t rate a treat at least an eight out of ten on how much I love it, I really should question whether it’s worth taking in the calories for it. Since soft drinks, including diet Dubbelfrisss, are extras, and I don’t rate them an eight out of ten at all, I’d much prefer water. That being said, if you’d like a soft drink, you’re more than welcome to go over to the staff or look in the fridge yourself. Let’s have a drink and let’s catch up.

If we were having coffee, I’d ask about your weather. Ours is good. We’ve had lots of sunshine, warm temperatures and almost no rain. In fact, I found myself pretty happy that we got a tiny bit of a drizzle this morning. Nature needs it (but then again it needs far more).

If we were having coffee, I’d share that this week started out rather rough, but has improved significantly as it progressed. I had some good meetings this week and we set out on the path of finding me a more suitable care home. For this purpose, the behavior specialist gave me some open-ended questions to think about for a “care home profile”. The answers I, my staff and the behavior specialist come up with will then be sent out to the care consultants within my care agency to hopefully find me a more suitable home.

If we were having coffee, I’d proudly tell you that I did quite a bit of walking this past week. I was finally able to go for a few 30-minute walks. They were exhausting, but I did it and I didn’t even use the elevator to go back up to the care home after the walks. Here’s hoping my physical fitness level is finally returning to some semblance of normal after the winter of me sitting on my ass and contracting COVID to top it off.

If we were having coffee, I’d tell you that, on Thursday, my one-on-one staff asked me whether I’d like to go to her home in the countryside to see her goats and their lambs. I loved it! Here are some pictures of me with the goats.



If we were having coffee, I’d tell you that, early this evening, I was startled because all doors in the entire home suddenly slammed shut. This normally happens when the smoke alarm goes off, but there was no smoke nor was there a smoke alarm going off. As it turned out, there was some power outage somewhere within the system. They’re currently working on solving it.

If we were having coffee, I’d share that I bought Cernit translucent polymer clay and am totally in love with a lot of tutorials that use it. I also looked up tutorials on how to use micas on polymer clay, since I still have some left from my soaping days. I can’t wait to start actually crafting again.

That being said, if we were having coffee, I’d tell you I’ve been struggling with wanting to do more than I can handle emotionally or physically lately. I’ve also been struggling with the staff overestimating my capabilities. It’s all rather frustrating when I want to be independent and productive but can really not cope.

If we were having coffee, lastly I would however say that I still find escapism in reading, listening to music, blogging and watching YouTube videos even if I don’t get to actually make the things I see.

How have you been?

Gratitude List (May 6, 2022) #TToT

Hi everyone on this first Friday of May. My husband and I always count the days from May 4 till May 8 as special days. May 6 is only special because Pim Fortuyn, a Dutch politician, was murdered on this day in 2002. Not really a cause to celebrate. Nonetheless, I’m doing a gratitude list today anyway. As usual, I’m linking up with Ten Things of Thankful (#TToT). Here goes.

1. I am grateful for a good talk with the behavior specialist on Tuesday. She was really understanding of my wish to eventually find a more suitable care home.

2. I am grateful I finally had a face-to-face meeting with my community psychiatric nurse again after several months. She’d been off work for a while and, before that, I had COVID and had to talk to her on the phone. I am so glad she’s back!

3. I am grateful my nurse practitioner called me on Tuesday, after I’d E-mailed him on Monday evening because I’d been in crisis. We will soon be planning a meeting with the behavior specialist too so that my nurse practitioner can get a more complete picture of my mental health.

4. I am grateful my husband’s car didn’t need replacing or repairing after all. The financial setback I mentioned last week, was related to his car. It made a weird sound, which could be the oil level, but could be a lot of other things, likely to be very expensive to repair. My husband was considering trading in the car if it wasn’t the oil level. Thankfully, that’s what it turned out to be.

5. I am grateful the store I bought the headphones at (the ones that stopped working after two weeks) finally sent off the headphones to the manufacturer. It took my staff making a phone call on Monday for them to send them out and another phone call for them to confirm they’d actually been sent out, but now I’m hoping they’ll be fixed soon.

6. I am grateful I am still allowed to borrow the headphones the Care Lab loaned us before I even originally ordered the ones that stopped working. You normally get to only keep products on loan for like a month or so, but the staff said they’d contact the Care Lab.

7. I am grateful I was allowed to go into the nearby care home’s garden to photograph their tulips yesterday. They are beautiful! I had been wanting to photograph them all week, but hadn’t been able to find the right time of day either sunshine-wise or with respect to being able to ask the staff whether I could enter their garden.

8. I am grateful for home-cooked macaroni this evening. It was delicious! Yesterday, I also had some leftover macaroni that we still had in the freezer from the last time we’d cooked it.

9. I am grateful for some crafty inspiration again. I finally did a little crafting today.

10. I am also grateful I finally seem to be in a reading groove again. I have truly been enjoying my young adult novel, Thrive. This is the final installment in the Overthrow trilogy and it’s been out for a year already, but because its prequel was a bit disappointing, I didn’t get to reading this one.

What have you been grateful for lately?

Sharing this post with Flower of the Day too because of the tulip picture.

Locus of Control

Like I said on Tuesday, I am regularly reminded of the need to change my attitude rather than my external circumstances, such as my living situation, in order to improve my quality of life. There may be some truth to this, in that I will always take me with me wherever I go. In this sense, having an internal locus of control – a sense that I myself can change my outlook on life, irrespective of external circumstances – may be the more functional choice. But is it true?

Ultimately, whether I change my attitude or I change my circumstances, doesn’t really matter, in that I am the one doing the changing, and in this sense am the one at least apparently in control, when in reality, I’m not. I, being a Christian, believe that God is ultimately in control, but even if He isn’t, control seems to be a rather elusive thing.


This post was written for the Six Sentence Story link-up, for which the prompt word this week is “control”.

What If I Lose My Care?

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 (May 4, 2022)

Hi everyone. I’m participating in the Wednesday HodgePodge once again. Here are Joyce’s questions and my responses.

1. May Day! May Day!…last time you shouted for help? Or maybe just asked?
I’d honestly never heard that expression. That being said, I shout for help quite regularly, most commonly when I’m having a horrible flashback or panic attack. Last Monday, I probably didn’t shout for help, but did plea for help. My one-on-one support staff had left me alone because I’d told her to go away in an irritable voice while melting down. This caused me to spiral into crisis. I will spare you all the details, but I eventually came to my senses and was able to cry out for help.

2. What’s something you may do this month?
Visit my sister and her family. I most likely will, since my sister is expecting a baby very soon. Other than that, there are just too many things I may or may not do, such as finish a book, get to another polymer clay project, etc.

3. “April showers bring May flowers”…is this true where you live? What’s blooming? What’s your favorite springtime blossom?
It’s somewhat true, but we haven’t had that much rain in April this year. I’m not really sure what’s blooming here. I do know one of the nearby care homes has tulips blooming in its garden. My favorite springtime flowers are probably hyacinths, but I love many others.

4. What’s something you learned at your mother’s knee?
I am reminded immediately of a nursery rhyme that goes “One, two, three, four, paper hat, paper hat.”. When my mother would count to four, I’d always reply “Paper hat”. When my father would count to four, conversely, even as a toddler, I’d reply: “Five!”.

5. Share a thought about motherhood.
Now we’re probably supposed to share something positive, such as how beautiful the gift of motherhood is or something. I, however, am not a mother and don’t have the greatest memories of my own mother’s mothering me. Besides, my father was my primary caretaker. Not that my memories of him are any better. All that being said, I feel strongly that mothering is a skill that doesn’t necessarily come naturally as soon as a child comes out of its mother’s womb. I wish it were this way!

6. Insert your own random thought here.
Since it’s Liberation Day (from WWII) tomorrow here, I would like to take a moment to show my gratitude for living in freedom, peace and in a democracy.

Dream Small

It’s interesting that, since deciding to want to start the process of finding me a more suitable care home, I’ve had the lyrics to the Josh Wilson song “Dream Small” in my head a lot. This is a Christian song about the fact that, while there’s nothing wrong with wanting to change the world in big ways, small contributions matter too.

Of course, that’s probably not the meaning behind these lyrics being stuck in my head. I don’t dream of ending world poverty or solving the climate crisis. In fact, the reason I want to move to another care home, has little to do with wanting to improve other people’s lives.

However, in a sense, the title of this song speaks to me, as do certain points in the lyrics. I may want to change my life in a big way by moving to another care home (assuming one can be found), but that doesn’t mean I don’t need to pay attention to the little ways in which I can improve my life right now. I still need to focus my attention on my current quality of life.

I am grateful that I finally found the motivation to look up a polymer clay video tutorial again. I couldn’t at the time actually go and work on the project taught in the tutorial, but I will later this week.

I am also grateful to have started reading again. I finally picked up Thrive by Kenneth Oppel, since I really need to finish the Overthrow trilogy even though Hatch was a bit disappointing.

All that being said, dreaming small does mean that small setbacks can get me to become unstable easily. For example, yesterday I found out that the headphones I bought at the end of March and that stopped working two weeks later, most likely hadn’t been sent out to the manufacturer by the store I bought them at. The lack of clarity about this sent me spiraling out of control. It may just be a pair of headphones – material things, money if you will -, but to me, the situation was quite unbearable.

With respect to the care home situation, I am also reminded of a fellow patient on the locked psych unit who told me I needed to focus on changing myself, not my living situation. This was over fourteen years and four living places ago. I do not fully agree, but partly, I do, in the sense that my distress is partly caused by internal sources. If I keep focusing my attention on external circumstances, these internal sources will not change. If I can reframe my thinking around those, I can decrease my distress. The problem is, I can’t usually reframe my thinking.

Autism and Aggression: An Autistic Adult’s Perspective

April was Autism Awareness Month. In previous years, I have dedicated my #AtoZChallenge to autism, but this year, I chose a different topic. For a while, I had it in mind to focus on developmental disabilities in general, but, as you can see, I chose another topic entirely. However, the topic of autism is still on my mind. In the coming weeks, I want to offer more of an insider’s perspective on autism and its characteristics. After all, I am autistic and I feel that the blog coverage on autism is heavily divided between parents of autistic children sharing their stories and adult autistics sharing advocacy. Now there’s nothing wrong with advocacy – I feel passionate about it too -, but there is also nothing wrong with personal experience stories. What is wrong is when these are mostly one-sidedly coming from neurotypical (non-autistic) parents of autistic children. Hence, my insider’s perspective.

For my first post, I am choosing a rather controversial topic: aggression. When parents talk about their child with autism, one of the first things they will usually mention is the child’s aggressive behavior. And in fact, this was the first thing my parents would say when asked to describe my problem behaviors too. It was also what got me to be referred to the mental health agency for an evaluation at age 20, which ultimately led to my autism diagnosis.

I don’t know about statistics of aggression in general, but it is highly stereotypical to equate autism with violent behavior. Autistics are not more likely to be deliberately violent than neurotypicals and they are, in fact, more likely to fall victim to violent crimes.

That doesn’t mean aggression doesn’t occur and, when it does, that it isn’t related to the autistic person’s autism. To say that it’s a “comorbidity” is, in my opinion, doing the autistic a disservice. It is, however, an issue that arises in the interaction between the autistic person and a highly autism-unfriendly world. After all, at least I have often gotten aggressive when my needs for autism-supportive care are not met.

For instance, one day in the psych hospital, a nurse, whom I will call Sara, had said one evening that she’d get back to me the following day after morning report to talk about getting me unsupervised off-ward privileges. The next day, I went up to Sara, but wasn’t able to communicate clearly what I wanted. “I’m not your assigned nurse today,” Sara said. “Go to Daisy if you want something.” Now the nurse I’ll call Daisy was a temp worker, so clueless about my needs or what I’d talked to Sara about the previous day. I got very irritable, because Sara had promised me she’d get back to me and now she was referring me to Daisy. I screamed, walked around the ward restlessly and constantly nagged the staff in an irritable voice. By handover, a third nurse, whom I’ll call Robert, came on and said that he’d put me in seclusion if I didn’t calm down right away. “Go on then, stupid,” I shouted. So he did.

This was not my worst incident of aggression ever. As a teen, my mother reports, I would hit her. I currently still occasionally slap or push staff. Usually, this again results from staff not following through on something or not following my daily routine.

I feel strongly that, though not all incidents of aggression can be prevented by parents or carers providing autism-sensitive support, a lot of them can. If an autistic is aggressive anyway, there are much better ways of handling it than solitary confinement.

loopyloulaura

Also linking up with #PoCoLo.

Zone: Describing My Creative Space #AtoZChallenge

Hi everyone and welcome to the last day in the #AtoZChallenge. About half of the times I’ve completed the challenge, I’ve chosen “ZZZ” for sleep as my topic for my letter Z post. I originally wanted to do the same now, but I really can’t think of ways in which my sleep relates to my creativity other than the obvious: that I need enough of it to be creative.

Instead, I am going with the word “Zone” and describe my creative space, or where I feel like I can “zone in” to my creative self.

I blog wherever I have access to my phone or computer. I could also probably be crafty in many places. However, the place I feel most comfortable being creative in, is my room in the care facility.

I have a desk, which I’ve had for over fifteen years. This desk, I use to have my computer and iPhone on. I prefer typing on my laptop keyboard, but can also type on my iPhone’s external keyboard. I cannot type anything beyond simple messages, usually consisting only of one word, on my iPhone’s screen directly. Even with the external keyboard, due to WordPress having done away with the classic editor on mobile devices, I much prefer to blog on my laptop. For this reason, when I want to blog and I’ll be away, such as at my and my husband’s house in Lobith, I’ll take my laptop with me.

For crafting, I have a separate table. I do need to clear it out when I am finished for the morning or afternoon, as I eat at that table too. I already showed you all where I keep my craft supplies in my letter K post. I can easily reach those from my table.

Then there is, of course, the shelf above my desk, where I display my finished projects. That’s part of my creative zone too, in that it inspires my creativity.