Not Their Baby Anymore

Posted on by Astrid

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.

Choosing Love #SoCS

Posted on by Astrid

Choosing love is important. Choosing that one person you would want to be with. Or choosing more than one if that’s your thing. Many lovers value their partner above themself. I’m not sure I do and that often makes me feel bad about myself.

I mean, I always say that my spouse is the most cherished, best, loveliest person in the world. Then he replies that it’s me. Sometimes we go on to joke that it’s our cat Barry.

Yet, whenever I say I love my spouse more than myself, I think: “So why did I choose to go into the care facility?”

I was fully expecting my spouse to say the same when he visited me for the first time in over two months, since visiting had been prohibited until now due to coronavirus lockdown. I fully expected him to come and tell me he didn’t want to be my spouse anymore. And yet he didn’t! I’m so happy that, even though I chose my own happiness over his, he chose love!

Written for this week’s Stream of Consciousness or #SoCS, for which the prompt today is “ch”. Also writing this using the new block editor.

I Want to Feel Better #SoCS

Posted on by Astrid

SoCS Badge 2019-2020

I want to feel better. Or maybe I need to feel better. No, that’s not correct. Feeling normal mentally may be a want, but I cannot need to feel it everyday.

I’ve been really in a depressed funk over the past week. Maybe, like I said on Thursday, it’s just that I was feeling so well over the past six weeks or so. Now that it’s passed, at least for now, I feel frustrated and depressed. I feel tired too. I’ve been lying in bed most of the morning and part of the afternoon today.

So what am I going to do about it? I’m writing now at least. That’s better than lying in bed. I still at least have some writing mojo left. In this sense, it helps that this writing exercise is stream of consciousness so that I don’t need to worry about structure.

What else can I do? I could be forcing myself to stay out of bed, but this is hard especially on weekends. So I’m not doing that.

I will be going for daily walks unless the staff have no time to take me on a walk all day (which is rare). Then, I will dance in my room for at least 15 minutes and/or go on the elliptical.

I will continue to write everyday. If it isn’t “blog-worthy”, so be it, but I’ll at least try.

I will meditate. It doesn’t need to be a long guided meditation or anything. A few minutes is enough. But I’ll make sure to incorporate mindfulness into my day.

Hopefully, committing to these will help me keep depression at bay. And if it doesn’t, then at least I’ll know that I’ve tried.

This post was written for Stream of Consciousness Saturday, for which the prompt today is “want”.

Empathy

Posted on by Astrid

I’ve been thinking about empathy lately. A few weeks ago, I wrote that I have been looking at my personality from a highly sensitive person or empath theory perspective. Though this is still somewhat fitting, I indeed experience this strange mix between low empathy and hyperempathy.

I mean, I pick up on the general atmosphere in a room pretty easily. I also absorb others’ emotions. I feel when other people are sad or angry in distress. I cannot pick up on happiness as easily, but I’m learning.

Then again, when presented with a social situation, be it in theory or in real life, I show very little empathy according to neurotypical standards. I have absolutely no idea how to articulate how people are feeling.

I recently saw a post by Ashley on alexithymia. Ashley contrasted alexithymia with borderline personality disorder, in which people are overly emotionally sensitive. Well, I have both. Or maybe I just have the autistic women’s general mix between high and low empathy.

The interesting bit about alexithymia is, when being assessed for it in 2017 as part of my last autism assessment, one of the scales was on interest in talking about emotions and such. I scored normal if not high on that one. Similarly, when taking personality tests like those based on the MBTI, I usually score higher on feeling than thinking. That’s because I somehow want to see myself as a sensitive person. That doesn’t necessarily mean that I am though. Like I said before, my husband sees me as an obvious INTJ.

My community psychiatric nurse signed me up for a psycho-education course on autism this past week even though I know quite a bit about it already. Looking over all the criteria, I thought: “That must be so hard to deal with… Oh wait, that’s supposed to be me.” There was a bit about lack of empathy too and that made me feel awful. As much as I “wanted” an autism diagnosis when last assessed for it, I don’t want to be seen as having low empathy.

This post was inspired by today’s RagTag Daily Prompt.

Distracted

Posted on by Astrid

Wow, can you believe it’s May already? I completed the #AtoZChallenge rather well actually if I can say so myself. Now I want to continue writing regularly for the month of May at least.

Today I’m joining in with Five Minute Friday, for which the prompt today is Distraction. At first, this prompt struck a chord, but I didn’t know why. Then I thought…

I want to live more productively. I also want to live more mindfully. These two seem contradictory at first, but honestly, if you get distracted by a thousand other things whilst being “productive”, you’re not mindful and not productive.

I want to stick to a regular writing routine. That doesn’t mean I need to write actually high-quality posts everyday. Of course, if my post is scrambled and going off on a thousand tangents, it may not be as easy to read. However, my writing will improve even if I freewrite. That’s why I try to join in with FMF today.

Then again, I’ve started this post a few times already and then stopped after the first sentence or two. I thought my post didn’t matter. Wasn’t good enough. Wasn’t real “content”. But then again, when I started this blog, I meant for it to be my space to let you hear my inner voice. So no matter how distracted I am, I will continue to write. That will ultimately led me to being more mindful and more productive at least in my blogging life. And hopefully in life in general.

Valid? #SoCS

Posted on by Astrid

I’m not sure I’m valid. I joined some groups for highly sensitive people and empaths on Facebook. I relate to literally almost every trait associated with being an HSP/empath. Then again, I’m also autistic and this means I don’t have the cognitive ability to know what’s expected of me in social situations.

I’ve heard there’s some theory about autistics being hyperempathetic where it comes to feeling others’ emotions but less able to know what another person needs. Something with cognitive empathy being lower than emotional empathy. Or was it the other way around? I have no idea and am too lazy to google it now.

I always feel like I want to see myself as a lot more positive than I am. I mean, some people close to me have said I even have some narcissistic traits. Some people think of me as a pretty stereotypical autistic and I’ve always felt good about that, as it validates my feelings of being different and my need for support. Empath/HSP only validates my feeling different.

Yet sometimes I feel that my seeing myself as somehow highly sensitive, is a way of obscuring my negative traits. It’s not that I don’t see them, but that I label them positively in a way. I mean, 90% of empathy traits are worded at least somewhat negatively. For example, have you been told you are “too sensitive?” Do you need alone time a lot? When a friend is distraught, do you feel it too? Heck, I sense negativity a lot, but isn’t that just me being a generally negative person?

I have a feeling that part of the reason I want to see myself as unique somehow, has to do with an external locus of control. I don’t want to see my huge flaws and instead go label them as assets or blame them on my childhood trauma.

And yet most people say I have a negative self-image. My CPN from mental health wants me to do a module of cognitive behavior therapy on helping me get a better self-image. Maybe I need to learn to see myself as just the ordinary person I am without either negative or positive stuff that make me different. After all, when I say I’m a pretty good writer, people close to me often say: “Well, about average for someone with your education.” Apparently I’m quite arrogant in this respect.

So am I allowed to feel different or is that just an excuse to set myself apart from the herd? Remember, feeling like you can only be understood by certain people, usually those with high status, is a narcissism trait in the DSM. I’m not sure. I want to feel okay about myself, but doesn’t that mean seeing my negative traits too? And seeing them as well as the positive ones for what they are: just traits? I guess I’ll learn this in the module.

I’m joining in with #SoCS, for which the prompt today is “val”.

Welcome to Another Day #SoCS

Posted on by Astrid

Welcome to another day. What day is it anyway? I have to check my iPhone to be sure. It’s Saturday, March 21, 2020. Here I almost wrote it’s March 20. Where does time go?

It’s the first week of whatever this self-isolation thing is called here in the Netherlands. It’s not a complete lockdown, but there’s not much we can do anyway. I went to the supermarket today, only realizing later on that if I’m allowed to go there and be relatively close to other customers, I should be allowed to see my husband too. Or is that flawed logic? I mean, no-one is really keeping the five feet distance that’s recommended.

I miss my husband. It dawned upon me last Thursday that if I do fall seriously ill with COVID-19, my husband won’t even be allowed to see me. I know, I’m in good immunological health, so I most likely will just get some nasty flulike symptoms, but still. It sucks not being able to be close to my husband.

Then a voice in my head said: “But you chose to leave him.” I didn’t leave him, as in divorce or abandon him. We’re still married and planning on staying so for life. But I did go into long-term care when I wasn’t literally dying living with him. I was struggling to keep up, but I did have food to eat and could, for the most part, get ahold of something when I was hungry.

I bought a bag of liquorice and ate it almost in one sitting today. Then I had a terrible stomachache. I don’t know why I decided to eat all the liquorice. I guess some part of me is feeling rather awful.

Yesterday, a little (inner child, for those not familiar with dissociative identity disorder) wrote to an E-mail list. I don’t know what she wrote and haven’t checked the responses.

Generally, we feel pretty calm, but I guess there are parts of me who are severely triggered by something about this COVID-19 crisis. Other parts are just bemused. It’s a strange world we live in indeed.

I’m linking up with #SoCS, for which the prompt today is “Welcome”.

COVID-19 Worries

Posted on by Astrid

The coronavirus came to the Netherlands a few weeks ago. Yesterday, we had the first case in the care facility’s town. The care facility hasn’t yet been affected as far as I know, but still, I grow more scared as the days go by.

I’m not scared of falling seriously ill or dying from the virus. Though some of my fellow clients are in their sixties, we don’t have anyone in my home who is otherwise at risk of serious illness or death as far as I know. I am not really sure whether I should worry about my family in this respect. So far, the thought has only fleetingly crossed my mind.

What I do worry about though is the consequences this will have for our society at large. I worry about people stockpiling food. I know my husband got some extra stuff a few weeks ago already when he saw it coming.

I worry about another economic meltdown. My husband has a pretty secure income, having just been hired indefinitely at his job a month ago. He might be forced to take time off, leading to a significant decrease in income, but he won’t be jobless. I am not sure about my income, as I’m on benefits. I don’t know that I will be able to handle yet another round of budget cuts to health care though.

More importantly in the short term, I worry about the need to isolate if you’re infected. What if I get the virus and need to stay in my room 24/7 for two weeks, not being allowed any human contact? Some other blogger idealized this by writing they’d finally have time to read all the books and binge watch all the Netflix series they wanted. As much as I’d like to escape the day center at times and just hide out in my room, I don’t think I could make this work for two weeks straight.

I also worry about staff needing to self-isolate if they get infected. Will this mean there won’t be staff to care for us? My staff has been trying to reassure me, but the letter sent out to clients’ family yesterday, had no information about what if the virus enters the facility in it. Which seems to be more of a “when” than an “if”.

I’m linking up with today’s RagTag Daily Prompt, for which the word is “Isolate”.

Whale Sounds #SoCS

Posted on by Astrid

When I started day activities at the first center I went to when being kicked out of the mental hospital in 2017, I experienced snoezelen® for the first time. Snoezelen® is a type of sensory experience at day activities for people with intellectual disability. The idea is that the entire sensory environment can be tailored to suit the client’s needs. In that room, there was a waterbed. I lay on it listening to a CD called something like Whales of the Pacific. The waterbed had speakers inside of it too, so that it vibrated along with the music.

I grew to love love love that CD. When I left for another day center, I tried to get ahold of this CD but found out it was no longer available in stores. My staff at the old center tried to copy it for me, but that didn’t work. At the next center, they didn’t really have relaxing music I liked, so I usually just lay on the waterbed without listening to music. Their waterbed didn’t have speakers in it either anyway.

Now at my current day center, I have come to enjoy relaxing music again. I particularly like a CD called Songbird Symphony. It has music and bird sounds on it. I was able to find the album on Spotify too, so that I can listen to it while lying in my own bed or while relaxing in my recliner too.

As for whale sounds, I discovered an album on Spotify of whale sounds with music by a group called Robbins Island Music Group. They also release other types of relaxing and focus-oriented music, but I like the whale sounds the best.

Interestingly, I still really don’t like whale sounds without music. I love whale sounds, birdsong and the like, but there has to be a musical component to it too.

Looking back, I remember asking my psychologist at the mental hospital whether snoezelen® would be a suitable activity for me. She didn’t think it would be, as she claimed this is only suited to people with intellectual disability. Well, I love lying on the waterbed, Songbird Symphony surrounding me. I don’t care that I’m apparently too intelligent for it.

I’m joining in with #SoCS, for which the prompt today is “animal sounds”.

#FOWC: Euphoric

Posted on by Astrid

I haven’t felt really happy for longer than a few minutes at a time in a long while. I mean, yes, sometimes I laugh out loud and feel pretty good for a few moments. Overall though, I feel irritable.

I have never experienced an euphoric mood as far as I know. Then again, in mental health, euphoria isn’t seen as something positive. It is one of the manifestations of the (hypo)manic phase of bipolar disorder. The other, dysphoria, is not as commonly recognized as a bipolar or mood disorder phase.

I’m not bipolar. I never experienced mania or even hypomania. I do however experience dysphoric symptoms. In fact, I’m almost always irritable.

Back in the day when the DSM-5 was being drafted, the term for what is now called disruptive mood dysregulation disorder, was temper dysregulation disorder with dysphoria. Neither term feels right to me, as someone who may’ve been diagnosed with DMDD as a child had it existed in the mid-1990s. I feel mood dysregulation disorder with dysphoria would be a better name. I mean, yes, of course these kids are disruptive, but the focus should be on their unstable mood. DMDD is characterized by the occurrence of frequent mood outbursts combined with a generally irritable mood even when the child isn’t experiencing dysregulation.

Thankfully, irritability was added to depression’s mood criterion in DSM-5 too. Before then, it was only a criterion in children and adolescents. I, however, have always experienced dysphoric depression. In fact, I’m pretty sure I’m diagnosable with persistent depressive disorder.

This is one reason I might want to experience a bit of an euphoric mood at times. Maybe I do get it, but usually it happens at an inconvenient time. I mean, I occasionally experience an extreme flow of ideas combined with an urge to act on them. Usually this happens during a night I cannot sleep though, so I cannot act out my impulses immediately. Then often the next day I’m back to my usual, irritable and slightly depressed self. Even though I know that it’s not an entirely positive thing, I wish I experienced euphoria for a longer while at times.