Four #SoCS

My husband and I like the number four. The reason is that the Dutch word for four, “vier”, is also the Dutch word for “celebrate”. One day when my then boyfriend and I were walking in a forest near his home, we went up a hill and he proposed we celebrate getting on top of the hill with a kiss. A little later, we saw the number four written on the path or something and he said four means to celebrate with a kiss. This is how we ended up making up the word “fouring” for kissing.

We played a lot of card games back then. This was in 2008, when I was still inpatient on the locked psych ward. We didn’t really know what else to do. So everytime a four came up in our card games, one of us would say that meant we had to kiss.

We got married on the day we knew each other four years exactly. Actually, the wedding ceremony was at 3PM. That had been the time of our first date too. It wasn’t because we selected the time, but it was quite cool anyway.

I like to remind myself of these beautiful moments. My husband gave me this little bride and groom that had been on top of our wedding cake. He dug it up from the attic the day after we had a little argument last week about me thinking I might go into supported housing nearly two hours from him. I liked the reminder. I love my husband! I don’t want to ever leave him. I don’t want to live too far from him. My marriage trumps my need for good care.

This post was written for Stream of Consciousness Saturday.

Socially Awkward #SoCS

I am socially awkward. Before I was diagnosed with autism, this was how I saw myself. I even had an E-mail group on Yahoo! Groups titled socially_awkward. This was for adults and teens with social issues of any kind.

Indeed, the main symptom of autism is still seen as social communicative difficulties. I do have them, mind you, but I don’t see them as my main symptom of autism. My main symptom is overload, both cognitive and sensory.

Then again, like I said, I do have issues with social interaction. I haven’t had a friend other than my husband since special education junior high in 1999. I tended often to be too clingy. In this sense, I guess I exhibited the “acctive but odd” style of social interaction that is often exhibited by males on the autism spectrum and is seen as the least impaired style, common in those diagnosed with Asperger’s Syndrome. Yet I do experience severe impairments in other areas.

When I was older, I tended to exhibit a more passive interaction style. Then again, when at meetings, I can still be dominating. This is probably why the people in the Dutch DID group decided I wasn’t safe. They kicked me out, officially because they believed I didn’t have DID or had imagined it, but they cited as reasons for this that I talked bookish about my issues. Well duh, that’s typical of autistic active-but-odd interaction.

But back to how mild or severe my autism is in terms of social interaction or other symptoms. I was diagnosed as ASD level 1 under DSM-5, so the mildest severity level. The reason is probably that I can hold down relatively normal-sounding conversations in structured settings and with people of my intelligence level. At least if they’re focused on me, which diagnostic interviews usually are. I cannot keep up a conversation about someone else for long. This may be why some people, including my parents, used to see me as selfish. I tend to want to dominate or talk about myself. That is, I don’t really want to, but it is the most natural.

In the second symptom category of autism, which is restricted and repetitive behaviors, I was also diagnosed as level 1. I disagree, particularly because sensory issues have been added to the criteria and I’m severely impaired with regard to that. I stim all the freakin’ time, for example. I feel I should definitely be level 2 on this symptom category.

This post is part of #SoCS, for which the prompt this week is “social”.

Fairy

Fairy. I have always identified with this word. Or elf. Or changeling. The mythology of fairies taking human children and replacing them with one of their own, a changeling, has always spoken to me. It is a common early explanation of autism in the centuries prior to Leo Kanner and Hans Asperger. Obviously, I don’t agree with this, but I do understand it.

When Elena, one of my most spiritual alters, first emerged, she didn’t see herself as entirely human. She was the first to claim a fairy, elf or changeling identity. ChangelingGirl is one of my most commonly-used nicknames on bulletin boards.

I still like the idea that I have some spiritual aspect to myself. I don’t fully believe in Indigo children or the like. Besides, the theory of Indigo children is rooted in racism, usually favoring White children over those of color. However, somehow, there is some appeal to it. I do believe everyone has some spiritual aspect to them though.

When the body was a teen and Elena was most prominent, we had these weird superstitious rituals. We would’ve been open to pendulums and the like if we’d known about them at the time. More recently, when we did know about alternative stuff like this, I’ve tried to explore the tarot. I have several tarot apps on my phone. Of course, they’re marketed as for entertainment only. I like to use them to inspire my self-reflection. I don’t care that there’s no scientific proof.

This stream-of-consciousness piece was inspired by today’s word of the day challenge.

Silence #SoCS

#SoCS Badge

I read Linda’s prompt for Stream of Consciousness Saturday (#SoCS) almost every week, but I’m not often inspired to write something for the topic. Today though, the theme is “silence/silent” and I was immediately reminded of something. As a teen, I would often go silent or “locked up inside”. I couldn’t speak. This would last for minutes to sometimes an hour. It was related to stress. I would often fall silent when talking to my tutor. He was a kind man, but he acted more like a counselor than a teacher and I couldn’t cope with his questions.

At one point, this tutor had decided he could no longer help me and he was looking for a psychologist to refer me to. He said this shrink would have to be very intelligent, because so was I. He added that he felt I was manipulating with my silence. Well I wasn’t. I was scared.

I learned when I was around seventeen about selective mutism. This is a condition that’s related to social anxiety, in which children (usually preschoolers or a little older) can speak, but won’t in certain situations, such as at school. The diagnosis is not to be made in a person who has autism, unless it is very clear that the symptoms are not merely due to autism. I was at the time not diagnosed with autism, though I was self-diagnosed. I joined support groups for parents of kids with selective mutism anyway. That’s where I learned the expression “locked up inside”.

I rarely have nonverbal episodes like this now, but I still do on occasion. Usually in this situation, a younger part is trying to come forward. I can often hear chatter in my head, but it somehow won’t cross my lips.

This situation is different from going “blank” inside, when I can still function but seem not to have any thoughts in my mind, or am detached from them. These moments usually are a lot briefer, lasting from seconds to minutes. They are also related to dissociation, like “zoning out” or something.

The tutor who witnessed most of my nonverbal episodes, indeed eventually referred me to a psychologist with the blindness rehabilitation center. Said psychologist had been educated in the Rogerian school, which is not really suited if the client is nonverbal for the most part, as I was at the time, at leasst in session. I continued to experience these nonverbal episodes for years when seeking mental health help. Now I am thankful I can sometimes talk openly in session. Not always or often, but sometimes.

It helps that my nurse practitioner asks the right questions. He phoned me yesterday for a check-in. He asked directly about possible suicidal thoughts, so I was able to be honest and say I had them, but not as badly as I’d expected given the latest in my long-term care application. I’m mostly glad I have him.

Celexa #SoCS

Today’s prompt for #SoCS is “cele”. Choose a word that starts with it and go from there. I initially chose “celebrate”, but I got stuck before I even introduced my topic. Then it hit me, I’d have to choose another word: Celexa. I bet this isn’t as common a choice as “celebrate”, which I’ve seen with at least one other blogger.

Celexa is the antidepressant I’ve taken for over eight years and counting. Its generic name is citalopram. It is a selective serotonin reuptake inhibitor (SSRI), the most commonly used type of antidepressant. It is known to help with both depression and some with obsessive and compulsive behaviors. Not that I have those a lot, but I do suffer with depression quite a bit.

That being said, I hadn’t even been diagnosed with depression when I was first put on this medication. It was used as an adjuvant to my antipsychotic, Abilify, when two increases in the dose didn’t calm my anxiety-induced irritability.

Years later, I was diagnosed with depression. This gave me the courage to finally ask for a dose increas of my Celexa. I had already had five dose increases in my Abilify and was at the highest dose, but no-one bothered to look beyond my irritability anymore. In fact, I am not sure the psychiatrist who initially put me on Celexa did.

In May of 2018, I got put on my current dose of 40mg. This is so far working quite well. I mean, even with the bad news I received this past week – and trust me, it was very bad, distressing news -, I am not falling into the pit of depression. I’m pretty sure that without my high dose of Celexa, I’d have spiraled out of control. And I don’t need that happening if I want the situation, which the bad news was about, to work out.

To Live a Meaningful Life

What does it mean to live a meaningful life? Does it mean to be successful? To contribute to society? I used to think that’s what it meant. I was raised with the idea that, in order to be worthy, you needed to contribute. Many people sitll hold this opinion and it creeps up in my mind every now and again.

Since I’m nowhere near successful by non-disabled standards, does this mean I don’t live a meaningful life? Especially since I used to conform to these non-disableed standards? Until my crisis of 2007, I lived a pretty normal, fulfilling, successful life. Now I seemingly don’t.

I mean, I need considerable care. I’m still not fully convinced that I even contribute to my marriage, even though my husband says I do. I don’t work. I live semi-independently, but this is so hard that I am applying to move into long-term care again. I do day activities at a place for people with severe intellectual disabilities.

Yet if I say this means I don’t live a meaningful life, am I not saying the same of those other people at my day activities place? They don’t contribute to society in any kind of tangible way. Yet they spread kindness and smiles all over the place.

Can’t I redefine meaningful living in a similar way that the National Federation of the Blind wrote a new slogan? They used to say that, with proper training and opportunity, blindness can be reduced to a physical nuisance. They also used to say that the average blind person can do the average job as well as the average sighted person can. This was significantly dismissive of those with multiple disabilities, or those who for any other reason couldn’t contribute as much to society as the average non-disabled person. Now they say you can live the life you want, blindness isn’t what’s holding you back. This is more tuned into the wishes of people to live meaningful lives in such a way that feels good to them. It moves away the focus from the need to contribute and onto the wish to fulfill one’s own dreams. How wonderful!

Linking up with Stream of Consciousness Saturday. The prompt for this week is “Mean(s)”.

My Full Potential

This week’s Five Minute Friday prompt is “potential”. That definitely has me thinking. Kate Motaung, the woman behind the FMF challenge, wrote about the potential in a nine-month-old child. The potential to become anything. I loved this perspectve.

I am 32-years-old. Does this mean I can no longer grow? Not at all! My full potential is still waiting for me to unpack the gift that it is.

The prompt had me thinking. Often, one’s full potential is determined in terms fo success, of how much money you make, how many college degrees you’ve got, etc. At least it’s in my case. As such, I still do not feel that I’ve reached my full potential.

In other respects though, I have. I have for the most part let go of the limiting power of thhis “full potential” rhetoric that values success over happiness. I would very much like to grow, but not when it’s enforced by other people’s seemingly “objective” standards of what my potential should be.

This, as always, took me more than five minutes to write. I’m not that fast of a writer yet. Maybe I’ll be able to reach that goal at some point. Maybe not. We’ll see.

Leaving the Path Paved for Me

Today’s Finish the Sentence Friday is a stream-of-conscious writing exercise on the prompt of “leave”. I have not been inspired to write much lately, not even snippets that aren’t “blog-worthy” but that I could’ve published here anyway. Yet this prompt immediately turned on a lightbulb in my head.

Yesterday, I made the decision to schedule an appointment with the care consultant for the agency I receive home support and day activities from. We’re going to discuss my options regardign going into supported housing. There I said it and now I’m hoping my parents never read this blog.

Nothing has been decided yet, except for the appointment with the care consultant having been set for October 4. It isn’t certain that I can get funding for supported housing. I’m not getting my hopes up too high, as there are huge budget cuts to long-term care for people with lifelong disabilities, which is the path I want to go. I could also go the community support route, where I could go into supported housing for the mentally ill temporarily. That most likely wouldn’t be of much benefit, as it’s heavily focused on “rehabilitation”.

However, assuming I can get into supported housing one way or the other, this will mean I’m leaving my husband. Not as in divorce, as living together is not required to be married here in the Netherlands and my husband has said he doesn’t want to leave me. In fact, he supports me every step of the way.

It also, however, means leaving my passing-for-non-disabled self behind. It means leaving the path paved for me by my parents (and my last institution psychologist). I’ll be a huge disappointment to them. I have been thinking of how to break the news to my parents. Thankfully, I can wait with that until the point, should it come, where I’m actually moving.

Since I scheduled the appointment yesterday, I’ve been flooded with memories. I told my support staff at day activities and that got me talking about the time I lived independently in 2007. At the time, I considered getting into supported housing too, but my support coordinator said I couldn’t be in their supported housing with my challenging behavior. This may be the case with my current agency’s supported housing too. That’s one advantage of independent living. After all, no matter how much I struggle in independent living, my husband won’t kick me out for needing too much care.

Posting Everyday #SoCS

Today’s Stream of Consciousness Saturday prompt is “post”. I want to write about the challeng in posting everyday. I have been meaning to write at least two posts at least some of the days of the month, but don’t seem to get that done.

Like, when I started this blog in late July, in my first week, I posted thirteen times. That’s two posts a day almost everyday. Now I’m finding it hard to post everyday at all. It’s probably partly because I don’t have much of anything planned to write about. Like, I want to write from writing prompts, but then I can’t pick one.

In October, I plan to follow #Write31Days, a challenge to write everyday. That was a success on my other blog once, in 2015.

By the way, I wonder when I’ll go call my other blog my “old” blog. I still cling to it to some degree, but don’t feel like writing on it at all. I feel much more comfortable writing random ramblings than going with a partiuclar theme or writing “serious” content.

That being said, I have already picked my theme for #Write31Days. No, I won’t disclose it yet.

Last year, I did #Write31Days on autism. I was fully committed to making it work, but on October 4, landed in hospital after a medication overdose before I’d been able to write my post. I could’ve tried to catch up, but had lost my mojo altogether then. I hope that doesn’t happen this year. Then again, my husband has my medication locked away, so I’m unlikely to take another overdose.

I Am Autistic #SoCS

I am autistic. Or I have autism, as politiically correct parents of autistic children would say. I prefer “autistic”. After all, autism is an essential part of my identity. It’s not like labels don’t define me and are just there for insurance coding purposes. Yeah, well, diagnoses do not define me. I am, after all, also multiple even though I don’t have a diagnosis of dissociative identity disorder anymore. Others do not define me. But my characeristics, including being autistic, do.

Saying “I am autistic” rathr than “I have autism” is preferred by the majority of autistic people. We also refer to ourselves as “autistic people” or even “autistics” rather tha “people with autism”. This is called idetity-first language, whereas “people with autism” is called person-first language and is politically correctly preferred by people wanting to erase the impact of autism.

I know, there are some situations in which a person may prefer person-first language regarding their own disability or identity. I don’t think this is wrong at all. However, people without said disability or belonging to said group should not dictate how we identify.

Identity-first language does not mean we can be called whatever the heck someone wants to call us. For example, a person with an intellectual disability should never be called “retarded”. That’s a slur. Even if said person has reclaimed that word – the R-word has not been reclaimed yet that often, but it might get to this point -, you cannot assume as a non-disabled person that you can just go about calling them the R-word. If in doubt, ask what a person wants to be referred to in regards to their disability or identity.

And of course, I want to be referred to by name most of the time. Unless another part or alter has taken over, but then some of them will be rather in your face about their name.

Don’t assume that political correctness is always preferred, but don’t assume anything really. We are all humans, all different and that’s valid. We should be loved and respected for who we are.

Linking up with Stream of Consciousness Saturday (yeah I’m late). The theme for this week is “-ic” or “-ical”.