Fight for the Light #SoCS

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Sigh
I fight
For the light
That’s out of sight

Those were the words that popped up into my mind when I read this week’s Stream of Consciousness Saturday prompt. I have absolutely no idea why these words popped up. I guess it’s something to do with the lingering effects of my crisis two weeks ago. I’m still kind of depressed.

However, there’s also some hope shining through in my words. Just because the light is out of sight, doesn’t mean I don’t fight to find it. I am blind, so anything is basically out of sight. Well, not literal light, since I have light perception, albeit only a little bit. Anything else, really, is out of sight for me.

I’ve been pondering object permanence recently. This is the ability to know that, if an object (or person) is out of sight, it is still in existence. This ability is usually acquired at around age eighteen months, so my niece should have it. I rationally do too. Emotionally though, not so much. Though I don’t literally feel that a person who has left my proximity, no longer exists, I usually half-joke that they might just as well be on the North Pole. I wonder whether this struggle with some level of object permanence, could be due to my blindness. I guess not though.

Basic Mistrust

I have been compelled to read up on emotional and psychosocial development. One theory is Erik Erikson’s theory, which states that, at each different stage in life (from infancy to old age), a particular conflict is present. In infancy and early toddlerhood, this conflict is basic trust vs. mistrust.

I initially thought that this stage corresponds pretty much to the first adaptation phase in attachment theory, which takes place between birth and age six months. When I checked it though, it includes this stage as well as the first socialization phase, age six to eighteen months. This may be one reason why I relate strongly to basic mistrust even though, in attachment theory terms, I function in most areas consistent with the first socialization phase.

One thing I’m facing lately is a chronic feeling of anxiety and distrust. In my care plan, my emotional development is outlined and in the fear domain, I am said to function at an age comparable to somewhere between zero and eighteen months. This includes all of Erikson’s first stage of psychosocial development. By contrast, it encompasses both the first adaptation and first socialization phase of attachment development. The reason my development in this area isn’t pinpointed to either of these two phases, is that I experience both basic fear (consistent with the first adaptation phase) and strong separation anxiety (consistent with the first socialization phase). Apparently, a baby under six months cannot yet express separation anxiety.

I have little idea why I might experience such strong anxiety, as in, what in my early development contributed to it. I mean, my parents claim I didn’t have these issues until I started to lose my eyesight at age seven. Seven is another important age in both cognitive and psychosocial development, but I don’t think that one is particularly important in my life. The earlier stages seem to make far more sense to me.

Of course, I do know that I probably didn’t have optimal care in my early life. This isn’t anyone’s fault. I was, after all, born prematurely and spent the first three months of my life in hospital. Though my parents visited me often, I don’t think I could rely upon them for meeting my every basic need. After all, they cannot possibly have been in my proximity 24/7, like the mother of a typically-developing child usually is at least for the first few weeks to months. My nurses must’ve provided me feeding and comfort at least part of the time.

As for affection, I have absolutely no idea. NICU nurses aren’t likely to be able to provide any significant level of affection to a baby at all, but I guess my parents would’ve made up for that. I went into this when discussing mother as source and mother as place of attachment. The truth is, I honestly mostly rely on my current feelings to guide my ideas. I, after all, don’t have many early memories of affection. My first memory related to it is from age four or five and it involves my mother using a nickname for me that referred to her needing to be at my side all the time. Then again, most people don’t have many early memories at all and remembering is still a form of reconstruction. In other words, because I experience a lot of basic mistrust now as an adult, it is easier for me to remember the memories that point to this.

This post was inspired by Fandango’s one-word challenge (#FOWC), the word for today being “Basic”.

Good Enough

Today’s optional prompt word for #LifeThisWeek is “Good”. Denyse takes on a cynical approach to the word, which reminds me of the many degrees of being called “good” I experienced.

In my elementary school years, my parents were in a constant fight with the schools for the blind I attended about my educational needs and my potential. According to the school, I was a good enough student. That’s the literal translation of the words that appeared on my report card often. Sometimes, when I was better than average, just “Good” appeared.
My parents thought I ought to get some more recognition. They thought I was excellent, sublime, a genius.

My schools thought I should be going to their secondary school program, which at the highest level catered to average students. My parents believed I could do far better.

I doubt, to be very honest, that my teachers truly didn’t see that academically, I was above-average. At least some of my teachers must have seen this. However, socially and emotionally, I was significantly behind. This was probably the real reason my schools recommended I continue in special education. My parents disagreed. They felt that I would be overprotected and underestimated in special ed. They might’ve been right. We’ll never know, since my parents took me from educational psychologist to educational psychologist until they had the recommendation for mainstream high level secondary education in their hands.

What I do know, is that I ended up being overestimated and underprotected. My parents would love to deny this and blame the staff in independence training for essentially setting me up for long-term care. Agree to disagree. Then again, we’ll never know, because I didn’t go into independent living and on to university right out of high school.

Sometimes, I wish I was just the average, good enough student that some of my teachers saw me as. Then at least I wouldn’t have to face the enormous challenge of both a high IQ and an emotional level comparable in many ways to an 18-month-old child. Then, I might not be writing blog posts in English, but I also might not need 24-hour care.

Then again, I enjoy writing blog posts. I like my care facility. Life is good enough for me.

Sweet Child O’ Mine: My Inner Child Parts #Blogtober20

Welcome to another day! The next prompt in #Blogtober20 is “Sweet Child O’ Mine”. I don’t have children and never will. However, I do have inner child parts and am pretty childlike at times, for better or for worse.

As regular readers of my blog will know, I have some dissociative symptoms. Particularly, I experience identity confusion and identity alteration. The latter of those is more commonly known as having multiple personalities. They each have their own names and ages too.

For example, Milou is a cheerful eight-year-old. She loves to learn independence skills like cooking, where appropriate to her age, of course. She is also quite the adventurer.

Suzanne, on the other hand, is quite emotionally disturbed. She is seven-years-old and feels the burden of having to grow up too fast. She often regresses into an emotionally much younger state.

There are many young parts inside of my head. It goes too far to talk about them all here. I mean, it’d probably confuse all of you, as it does me sometimes (hence the identity confusion).

Also, of late, I’m not feeling them that much. Yes, I do feel childlike, but it’s more like I can own the feelings myself. That’s considered a sign of healing. It might be temporary though, as it often is.

Dissociative symptoms such as multiple personality are usually the result of trauma. I, indeed, endured quite a few adverse childhood experiences. I also experience a large gap between my intellectual ability and my emotional functioning. In fact, when being assessed on a scale for emotional development, I was said to function at a level similar to an eighteen-month-old child. On some subscales, I even function at a level similar to a baby. This distinction may be one reason I tend to disconnect from myself.

Of course, everyone has an inner child. Or maybe more than one. However, for me, I often cannot function like an adult would when I’m in inner child mode. For example, when a child part is prominently present in my body, I cannot usually talk like an adult would.

Right now, like I said, I am able to retain both my childlike wonder and my adult functioning for the most part. Like I said though, this may be a temporary experience. I’m not sure and only time will tell.

#Blogtober20

Something I Struggle With

A few weeks ago, Marquessa over at The Next Chapter started a writing challenge to get herself motivated to write everyday. Yesterday, I saw that Cyranny had joined in. Cyranny started with the first prompt. That one didn’t appeal to me, so I will go to the second. It is to share something you struggle with.

Regular readers may be able to guess what I’m going to share. It wasn’t the first thing that came to mind, but I got inspired by Marquessa’s post. She shared that she struggles with being called “pretty”. She then goes on to say that brains matter more to her than beauty. Well, I wouldn’t exactly say I’m the opposite, but I do struggle with being called “intelligent”.

As a child, I was often called intelligent. My parents loved bragging about my so-called genius. After I had an IQ test at age twelve, this became even worse. The IQ test, though not the first one administered to me, was the first one about which the assessor actually told my parents the exact IQ outcome. My performance IQ can’t be measured because I’m blind, but my verbal IQ was identified as being 154 on the Wechsler scale. This means I was supposedly within the highly gifted range.

As a preteen and early teen, I didn’t mind my parents bragging about this three-digit number as much. I was proud that, according to my mother, I had the same IQ as my father. Now the only time my father had an IQ test administered, he at least told me that was in the pub with a psychologist friend and he was rather drunk. I’m assuming his real IQ may be higher.

As I grew older though, my apparent high IQ more and more stood in the way of my being myself. It was frequently used by my parents and professionals to “prove” that I should be capable of solving my own problems in social situations. This got me interested in the concept of giftedness as asynchronous development. Later, I was diagnosed with autism. Still, my parents reasoned that I was just extremely intelligent.

The reason I struggle greatly with being called “intelligent” is the assumption that I am smart enough to solve non-intellectual problems. This may be so in most gifted people – I think I remember recent research disproves the theory of asynchronous development -, but it isn’t the case for me. Like I mentioned a few weeks ago, my emotional level is equivalent to someone approximately 18 months of age.

Last year, my IQ was used against me to deny me long-term care. I mean, due to my multiple disabilities and low emotional functioning level, I do best in a care setting normally catering towards severely intellectually disabled people. Because of my IQ though, I can’t get funding based on developmental disability. I am lucky that I’m blind in this respect, because I ultimately did get funding based on that.

Contrary to Marquessa, I do not struggle with compliments about my intelligence because I don’t agree with them. I mean, the IQ test I took at age twelve is rather outdated now and I scored much lower when I took another one in 2017. However, I still know I’m indeed intelligent. That being said, that’s not all I am. In the future, I’d like to be able to take pride in my intellectual abilities without them triggering the fear that I’ll need to be good at other things too.

Adult Separation Anxiety

One of the consultant’s comments in my emotional development assessment was that I have a lot of separation anxiety. The rest of my care plan is also full of how I’m afraid to be alone. A little over three years ago, my psychologist at the psych hospital said basically the same by diagnosing me with dependent personality disorder (DPD). Then, I vehemently disagreed. It wasn’t just out of anxiety that I needed lots of care, after all.

Another reason I was in denial of my separation anxiety/DPD, is the judgmental way in which my psychologist approached the matter. She felt I just needed a good kick in the behind and for this reason discharged me from the mental hospital almost with no after care.

Of course, that’s not the way to treat dependent personality disorder. Besides, one of the main features of DPD is not physical dependence, but unquestioning compliance, which I certainly don’t display. I don’t lack assertiveness at all.

I want to clarify here that, at least in my case, I’m not unwilling to be alone. I’m alone right now as I type this blog post. When I’m mentally well, I can be quite happy being alone, as long as I know there’s someone available if I need them.

It’s all too easy to judge people with adult separation anxiety disorder or DPD. Usually though, it’s much more helpful to approach them from an emotional development angle than from a character flaw angle. I again at least don’t want to ask for attention all the time. The things that I get help with from my staff, even though I can sometimes do them myself, I don’t ask for help with because I’m just lazy. In fact, it’s often easier to do some self-care tasks quickly by myself than to ask for help, but then the tasks don’t get done thoroughly.

I have for the majority of my life figured out how to care for myself alone. That’s because, despite all the independence training I got, no-one started with the very basics. Besides, like I said yesterday, I don’t usually distinguish between feelings of hunger, pain, etc. Isn’t it a bit odd then that you’d expect me to remember to do the day’s self-care tasks (which are many!) and actually do them all by myself?

I am so glad my current care facility isn’t as judgemental as my former psychologist was. My current staff don’t assume unwillingness, like she did. We may not find out soon yet what will turn out to have been the best approach. It will also probably depend on what measure of success you use for the outcome: independence, mental wellbeing, cost-effectiveness, etc.

Emotional Development

Last Tuesday, I discussed my care plan with my support coordinator. She needed to update it because the facility is going to apply for a higher care profile for me. Besides, it needed to be made current for my living in the facility rather than at home anyway.

My care plan is divided into several sections, including general health, diagnoses, intellectual, emotional and social functioning. The part about my intellectual functioning unfortunately still lists my IQ as measured 20 years ago. Since it according to the test dropped some 35 points between 1999 and 2017, I’ve wondered whether this is merely due to Flynn effect or something or I’m actually experiencing cognitive decline. Still, my IQ as measured in 2017 was above-average, so it doesn’t really matter for long-term care funding anyway.

In the part about my emotional functioning, I saw for the first time the results of the emotional development impression the consultant from the Center for Consultation and Expertise had written in 2018. This was a bit shocking to be honest. I knew I’m thought of as functioning at an emotional level equivalent of a toddler. It was difficult though reading that in several areas, i’m supposed to function at a level of less than 6 months. This wasn’t surprising though.

For instance, one area in which I function at a level of 0-6 months, is body awareness. The reason the consultant listed was my inability to make contact when overwhelmed. I would add to that my inability to distinguish different bodily sensations, such as hunger and pain. I tend to react to everything that’s physically overwhelming by acting in a self-stimulatory way. The consultant also listed my craving physical stimulation such as rocking as a reason for this.

I also apparently function at 0-6 months with respect to differentiation of emotions. In other words, I don’t do that. The consultant explained that I have a lot of distress and am hardly ever relaxed. While this is true, I’d like to add that I don’t generally distinguish between different strong emotions. Like, at all. Each strong emotion feels equally overwhelming to me, even strong “positive” emotions.

With respect to verbal communication, my level is 3-7 years. Because this scale was developed for people with intellectual disability, the highest level is 7-12 years and I in some ways expected to be qualified as functioning at that level. I do with respect to handling familiar tools, such as my computer. However, the consultant apparently recognized my less-than-great (understatement!) language comprehension.

It was rather interesting to read this assessment, even though of course the concept of mental age used here is a bit off to say the least.

Mother As Place of Attachment

It’s already been eighteen months since I last wrote about what I read in The Emotionally Absent Mother. Still, the book hasn’t just sat there. I struggled to move on from Mother As Source. The next section is titled Mother As Place of Attachment. Somehow, this is a really hard section. I don’t really know why. I mean, yes, part of the reason I struggle to move on in writing about this book, is that I do it publicly and what if my parents read this? Then again, I don’t really care. I’m in groups on Facebook for childhood emotional neglect and emotional abuse survivors too. Though the member list of private groups isn’t available to non-members, I’m pretty sure they know somehow. Honestly, regarding this, I care more about my husband’s opinion than my parents’.

But there’s something specifically about this section that is hard. I’m not even sure what. Maybe it’s just that I don’t have a lot of early memories of my mother. I attribute this to my father being the homemaker and primary caretaker in our household. But fathers can “mother” too.

The first question asked in the section on your mother as place of attachment, is to rate your sense of connectedness to your mother on a scale of 1 to 10. The next question is how your sense of connectedness evolved over the years.

Well, with my mother, I am generally at a 5. I don’t feel she “gets” me, but we do get along okay. Like I said when discussing mother as source, I don’t feel that I’m made of her, but she isn’t from another planet either. Or maybe she’s from Venus. I mean, we’re not constantly disconnected.

Over the years, my sense of connectedness to my mother has stayed the same. I never quite felt like we had a strong bond, but I didn’t feel totally alienated either.

My father is a different story. We had a strong connection, maybe around 8, when I was a child. Now we’re at a 3 at best. Like I said in my mother as source post, as a child, I saw my father as the embodiment of intelligence, success and well what other positive characteristics are there really? When I got to question his having sole ownership of the truth at around age 15, things started to change. Or did things change earlier on? I’m not sure.

Another question is about bodily contact. This is where I get to question whether the schism occurred earlier than age 15. When I was a young child, my father definitely did give both my sister and me lots of opportunities for bodily contact. I remember when my sister and I were little, my father would wrap us in a towel and drag us to our bedroom. He called this “swordfish” and my sister always asked for “sordsish”.

My mother says that, around age 7 or 8, I stopped wanting to sit in my parents’ lap. From then on, bodily contact like hugging or good-night kisses was very ritualistic. I remember around age 11, being forced to read a certain number of pages in Braille if I wanted a good-night kiss. This at the time felt very distressing. I haven’t studied emotional development except in the context of intellectual disability, so I have really no idea whether it’s normal to still want good-night kisses at that age. I guess not.

As a side note, I did initiate physical contact such as hand-holding with practically every adult until I was at least 12. In my psych eval report from age 11, the ed psych notes that I claim not to need a cane but grab her hand immediately anyway. That first bit was no doubt related to my difficult accepting my blindness, but I don’t think the second bit is fully. Even as an adult, I truly crave physical contact and am a bit indiscriminate in who can give it to me. I mean, I am pretty clear that no male staff can provide me with physical comfort (or help me with personal care). With regards to female staff though (and the entire current staff of my home is female), I do accept physical comfort. I honestly don’t know how my husband feels about this.

PoCoLo
Keep Calm and Carry On Linking Sunday

Carol and Jane

This week’s Reena’s Exploration Challenge is all about describing the interactions between (your) thinking brain and feeling brain as if they’re characters, perspectives or mindsets. In the theory of dissociative identity disorder, alters are divided into two categories: apparently normal parts (ANPs) and emotional parts (EPs). Some theorists refer to them as Daily Living and Trauma Fixated parts instead. Additionally, I have experience with dialectical behavior therapy, which has the concepts of rational and emotional mind and Wise Mind as the goal to integrate the two.

I don’t believe in the rigid ANP/EP divide and the alters I’m going to describe in the piece below, would most likely both be seen as EPs, even though they’re on opposite ends of a spectrum. You see, one of the main triggers for identity confusion for me is the inability to integrate my low functioning level with regards to my social and emotional development with my at least somewhat above-average verbal IQ. In this sense, Carol and Jane do represent thinking brain and feeling brain.

Yesterday I struggled. I got an official reminder from local taxes from when my husband and I still lived together in the tiny village. An official reminder means they’d previously sent out another type of reminder that doesn’t come with extra costs. This one did come with extra costs and the next step, if I don’t pay, would be a debt collector’s visit. I don’t know why the reminder was only sent to my My Government inbox and not to my husband’s and I didn’t understand the reminder. I texted my husband to ask him for help. By this time, Carol, the alter who is very emotionally immature and vulnerable, was already getting upset. Why don’t I just go under financial management and never bother with money again?

My husband was a little annoyed that I shoved this task onto his plate. For this reason, Jane, who wants to be the intelligent, successful, self-reliant one, said: “Okay, I’ll solve it.” Carol was still prominently present in my mind and she has difficulty thinking clearly. In the end, I paid off the tax debt, but put the wrong identification number in the Comments field. This means the tax agency won’t be able to identify me as the debtor, so it may mean I lost the money. It was €160.

From there on, Carol took full control of my mind. I cried my eyes out and really wished I could crawl under the covers, get a guardian, be supported in the care facility and never worry about difficult decisions again. I didn’t even feel like seeing my husband, as Carol feels too inadequate for marriage.

Ultimately, the situation got sorted (hopefully). My husband sent out an E-mail to the tax agency asking them to either process my payment with the wrong number or return it to me so I can submit it again. Still, this whole situation has us (as in, me with all my parts) truly triggered. It’s a sad reality that each time, I am confronted with the disconnect between my good intellectual functioning and my poor emotional functioning.

At Every Age

There’s so much I want to write about, but I can’t get myself to sit down and actually write. Well, sitting down is not the problem, as I’m probably still a pretty sedentary person, but actually writing is.

Today, I”m joining in with Finish the Sentence Friday (#FtSF). This week, the prompt is to write about your (or your child’s or whoever’s) favorite age.

I used to think being younger was better. I don’t really know why. Maybe I was conscious at an early age of the fact that life is finite, so growing up meant getting closer to death. I also thought that growing up meant an increase in responsibility, which scared me from an early age on. After all, I knew from as young as age nine on that I was supposed to leave the house and go to university by eighteen. That’s a huge burden of awareness to carry as a child that young.

Now I think being at every age has its beauty. I do worry that I’m declining in health already, and this is where the sitting down comes in. I really need to get more active, because I know that at every age, you can do something to improve your health and wellbeing.

I also think that, at every age, you can retain or regain some level of childlike wonder. We see this in the alters, who each represent a particular stage in development. Some are grown-up for their age, like Jace, the 9-year-old who was told about going to university and leaving the house. Others are more childlike, like Milou, who is 8-years-old and very playful. We also have an adult, Marieke, who, though she’s 32, enjoys sensory learning and play.

In my fellow clients at day activities, I also see the beauty in every age. They are intellectually disabled, most with a so-called “mental age” under six. Now the concept of “mental age” is highly ableist. However, learning about normal child development can teach us some interesting things about myself and others with developmental disabilities anyway. I was intrigued to read about emotional development as it pertains to people with mild intellectual disability and as it pertains to me in some way too. The consultant psychologist assigned to my case in my care-finding process, said I function emotionally at a 16-month-old level. This explains a lot of why I act the way I do. Interestingly though, we don’t have an alter who identifies with this age.

In short, I think every age and stage in development has its beautiful sides and its ugly sides. Childhood means your parents still have a lot of control over you, but it means you have relatively few responsibilities. Adolescence and young adulthood come with increased responsibility and freedom. I don’t know yet what middle age or old age will bring, but I’m confident I’ll find the beauty in it.