The Daily Four (August 26, 2019)

Over at A Guy Called Bloke, there’s a new meme called The Daily Four. I found the questions very inspiring, so I’m participating today.

What was the worst thing you did as a child?
I wasn’t a very naughty child, but my parents claim I terrorized the family. Being autistic, I’ve done a lot of destructive things during meltdowns. I ran away quite often and, according to my mother, was physically aggressive towards her as a teen. One day in particular, I remember ruining my sister’s birthday party (I think it was her 10th birthday) with my meltdown.

Growing up, what was your ideal dream job and did you bring that to a reality at all?
I’ve always wanted to be a writer. Though I only had one piece published in an anthology, I am pretty sure that blogging is a dream come true. I always thought that, like Anne Frank, I’d have my diary published someday. I guess I didn’t realize how unimportant my life is compared to hers.

What were the things you both liked and hated about your schooling?
I was often bored at school during my years in special education, but I liked it there nonetheless. At least I had friends, something I cannot say of my time at grammar school. What I most hated though, was the loyalty conflict I had, because my parents were in constant fights with my school over my needs.

Where there is a will, there is a way! Do you agree?
Yes, usually. Some dreams are unrealistic, but there’s always a way to come close. For example, of course, I will never be a plane pilot, being blind, but if I wanted to, I could arrange to see the inside of an airplane. In fact, I did at age twelve.

Working On Us Prompt: Self-Care and Personal Hygiene

This week’s prompt on Working On Us is about self-care. I initially thought of self-care as those things we do to pamper ourselves, but then when I read the questions, I realized Beckie means basic self-care. You know, personal hygiene, such as showering or brushing your teeth.

I definitely have always had trouble with this. Part of it may be due to my lack of awareness of my appearance, which may be due to both blindness and autism. However, the fact that I don’t always shower or brush my teeth regularly, certainly isn’t.

I have always had trouble with proper personal care. When I was about fourteen, my high school tutor got complaints from my classmates that I smelled a lot of body odor. He told me I really had to develop a personal hygiene routine, but didn’t explain how to go about it. He was my PE teacher and said that he personally showerd twice a day. So I initially thought I had to do that as well, so the next day, I jumped in the bath at 6AM. My parents were not amused. With my parents, I finally agreed on a routine of baths or showers three days a week, on Sunday, Tuesday and Thursday evenings. That way, if I went to school, it’d never be more than 48 hours since I’d had a shower or bath.

My parents still didn’t explain how to wash myself. Honestly, now that I’m 33, I still get told by my husband at times that I don’t do it properly.

The problem of course wasn’t just that my parents didn’t teach me. After all, presumably my sister knows all about hygiene. It was also that I had an aversion against personal hygiene activities. Here is where my mental health is involved. Like, I have executive functioning issues on the best of days, making a “simple” shower very difficult. When I’m depressed, I cannot cope with the stress of having to shower.

My lack of self-care wasn’t even picked on when I was first assessed by a psychiatrist. Maybe he did notice I smelled, or maybe that particular day my body odor wasn’t too bad or I’d had a shower. If he did notice, he didn’t tell me so or write it in the report. Neither did any of the next so many psychiatrists and psychologists I had. I only found out that my psychologist at the resocialization unit in Nijmegen had noticed because it was written in my long-term care application at the time, that I didn’t get to see until we applied again last year.

As for brushing my teeth, I hated toothpaste. I still do, but at age 18, finally forced myself to use it. I never brushed my teeth properly until I got an electric toothbrush for my birthday this year. Now I’m still not sure I do it right, but I at least brush for the required two minutes. Interestingly, the elctric toothbrush is less horrible sensorially than the handheld one.

I find it interesting that, though lack of personal hygiene is part of an assessment of mental functioning, so few mental health practitioners take the time to discuss it with their patients. Like, when I was in the mental hospital, no-one offered to teach me personal hygiene. Not even when the dentist recommended I get help brushing my teeth. They said it was my responsibility. I really hope that, when I’m in a care facility for people with developmental disabilities, that will change.

Dealing with Some High School Memories

We are struggling quite a bit. We hardly know why, but yesterday, a memory appeared. It’s not like we weren’t aware of this having happened before, so it’s not a repressed memory. However, it still feels as though only certain insiders can “own” the memory, if this makes sense.

This is hard, because we got told last Thursday by our nurse practitioner that it’s good people aren’t validating our experience of dissociation. For example, they’re reminding us that the body is 32 and we’re all Astrid. That may be so, but it’s only getting us to further disconnect from ourselves.

He told us that being a child at heart is not wrong, but claiming to be a child is. Or something like that. He more or less told us to look beyond the emotional parts’ words to what was actually troubling us. For example, Jace saying she has to move out by age eighteen meant we’re afraid we won’t get long-term care funding. Fine by me but I think it’s not that simple. I think this may be an actual memory bothering Jace and it was just triggered by the long-term care stuff.

Anyway, yesterday evening we started experiencing high school memories. Our high school tutor was our safe person at the time. We trusted him more than we did our parents. Our parents weren’t okay with this. When in ninth grade, we had been struggling and our schoolwork was suffering. Our tutor asked us to tell him what was going on. We wrote it down. Then our tutor told our father, who worked at our school. He refused to disclose what we’d written though. I understand this, but it got our parents angry and led to an incident of bad mental abuse.

Anyway, like I said, this tutor was our safe person. He was the first one to know about our being multiple other than a handful of readers of my online diary at the time. He wasn’t impressed by it as much. In fact, he told us we’re just manipulative. This got us to go in denial and not tell anyone else.

It still upsets us that we could’ve had a chance for real help if we hadn’t been in denial at the time. I mean, the tutor told our first psychologist about our experience. This psychologist suspected DID, but we denied everything. It’s understandable, because we were still in somewhat of an unsafe situation at the time.

We trusted our high school tutor, but he betrayed our trust in some rather overt ways. He told our parents that we suspected we were on the autism spectrum. Not that there was no other way for them to find out, as we wrote about it in our public online diary. However, he told them that we’re a hypochondriac for it. In this sense, he was on our parents’ side. And yet, we didn’t see it.

Then again, is it okay for me to think in terms of being on someone’s side or not? I mean, our parents were supportive in some ways. Our mother was at least. Our father was and still is too self-absorbed to actually care about anything other than his intersts and opinions. It’s not black-or-white. People can be good and still do bad things. Or something like it.

Five of the Most Significant Events in My Life

And once again, I didn’t post for nearly a week. I am beginning to feel pessimistic that I’ll complete the A to Z Challenge in April. However, I still would very much love to make it happen. I am pretty uninspired though.

To get back into the writing habit, I am choosing to write about a topic I’ve already posted about on my old blogs a couple of times. It is good though for my new readers of this blog to get to know me. I am going to share a list of important events in my life. Because I need to explain a little about each, this post may become a bit long.

1. The day I left the hospital at three months of age. I was born over three months premature and had to spend the first 94 days of my life in hospital. The unit I was on is commonly referred to as neonatal intensivecare unit or NICU for short, though I wasn’t in actual intensive care the whole time. I was on a ventilator for the first six weeks and, after I learned to breathe on my own, was moved to medium care, the general ward and eventually home. In the NICU, I sustained a brain bleed and developed an eye condition called retinopathy of prematurity. These two conditions are the main cause of my disabilities. I was finally discharged from the hospital on September 29, 1986.

2. The day I started special education. I started school, as most children here in the Netherlands did at the time, on my fourth birthday (June 27, 1990). I started in the first year of Kindergarten, which takes two years here. Just before the end of my second year in Kindergarten though, on May 11, 1992, I was moved into special education for the visually impaired.

The reason why I had to transfer remains a mystery. My parents say it was because I had to learn Braille, but I didn’t get to learn that till over a year later and only because a totally blind boy joined my class. The school was generally only equipped to educate those with low vision. Besides, the first special school my parents chose for me, was for those with mobility impairments. I was turned down because cerebral palsy isn’t my primary disability.

My inner five-year-old holds some memories of this situation. In our memory, I was ill with what could’ve been a partly psychosomatic illness just before moving to special ed. I cannot prove this though.

3. The day I started mainstream secondary school. My parents fought for years to get me out of special ed again. If I have to believe them, they fought from the moment I started in special ed to get me out again. They were convinced I’m far too intelligent for special ed, despite the fact that most schools for the blind offer a normal elenentary school curriculum. Anyway, they finally succeeded after taking me to the third ed psych in eighteen months, a psychologist who’d never even seen a blind person in his practice. This was also when I got labeled as gifted with a verbal IQ of 154. These three digits haunt me till this day.

I started mainstream secondary school on August 25, 1999 at my city’s grammar school. Those six years were awful. I scored above-average academically, but struggled socially and emotionally. I dissociated through most of my time there and hardly have any real memory of it.

4. The day I suffered my psychiatric crisis. After graduating high school in 2005, I’d taken two gap years to work on independence. While in my second gap year, I was diagnosed as autistic. Leading up to this was my increasingly falling apart at the independence training home. I got sent out to Nijmegen to live on my own on August 1, 2007 though. I fell apart within three months. By late October, I was wandering everyday, had multiple meltdowns a day and ended up suicidal. I was eventually hospitalized on November 3.

5. The day I got kicked out of the hospital again. I remained in a psychiatric hospital for 9 1/2 years, but eventually got kicked out on May 8, 2017. I believe the real reason is the government budget cuts to mental health, but my treatment team at the time blamed me. I have been living semi-independently ever since. As regular readers know though, I’m in the process of hopefully getting into long-term care again.

PoCoLo

My Successes in Life #Write31Days

Welcome to day four in #Write31Days. I use this challenge to write on personal growth. I’m struggling a lot, so as to get myself to think more positively, I decided to take the day one prompt from Lisa Shea’s journaling prompts on positive thinking. It asks us to list our successes in life. This is rather difficult, as my successes are often used against me. For example, the fact that I completed a high level high school, is used as “proof” that I don’t need lots of care. I am just going to write anyway and see where this takes me.

1. I completed a mainstream, high level high school. This doesn’t just show my academic ability, but my persistence too. I hated it with a vengeance from the moment I started it, but finished it anyway.

2. I completed my first year of college. Same shit really. I liked my major though.

3. I tried to live independently. I failed, but I still consider it a success because I tried the best I could. Again, this shows my persistence.

4. I have been a pretty consistent blogger for over fifteen years.

5. I got a piece published in an anthology. In 2015, my piece was published n a book on typed communication by autistic people.

6. I learned to use an iPhone. I thought last year that I may not be able to learn to operate new-to-me technology anymore, but I was.

7. I prepared my own breakfast today and didn’t spill it everywhere.

8. I am surviving. Having been suicidal on too many occasions to count and having run into a little too many other dangerous situations, I’m proud to be alive. Not happy, but proud.

9/11

Today is Tuesday, September 11. It’s seventeen years ago, also on a Tuesday, that the 9/11 terrorist attacks happened. I, like most people, know exactly where I was when I heard the news.

The terrorist attacks happened at around 9AM New York time. This corresponds to 3PM my time. I was in my room at my parents’ house processing the events of the day. Earlier that afternoon, I had been filmed with a hidden camera while riding in a taxi home from school. There at the time was this reality show in which a taxi driver talked to random but thought-to-be-interesting passengers. I, being blind and attending regular school, was definitely thought of as interesting. I didn’t think so, or at least, I wasn’t as eager to show off myself as I am now, so I didn’t consent to the recording being shown on television. I till this day, as open as i may be on my blogs, never consider putting up a video recording of myself.

I had just finished writing my diary entry for the day when on the radio I heard the breaking news of an airplane having crashed into one of the Twin Towers. Then at around 3:30PM, my father called me and my sister downstairs: “New York burning!” It didn’t fully register with me, though I did devote a full diary entry to it in the evening. I was at the time more fascinated than horrified. In fact, if I remember correctly, I was mostly excited about the downward spiral of the exchange index the following Monday. Yeah, I never quite got economics.

I never fully understood at the time how 9/11 would change the world. In fact, in early 2002, I drafted a story, set in 2016, about an Afghan and an American girl, both born shortly after 9/11, becoming penpals. I imagined that the “second generatin”, as I called them, would only still suffer generational trauma. Now I am not at all politically informed, but it doesn’t surprise me at all if the current terrorist groups in Syria are a direct result of the Bush administration overreacting to 9/11. And remember, Afghanistan will most likely not be the free nation I dreamed of in my story draft anytime soon.

An Eighth Grade Memory

I’ve been meaning to write a lot, but I can’t. I am having a lot of memories. That’s what they’re supposed to be. I already survived and am now safe and an adult, age 32, living with my husband. I don’t care, this pretty freakin’ hurts. One of my inner teens, Karin, hurts the most.

On November 17, 2000, I hid under a coat rack during recess. I don’t even know why. I mean, yes, I was feeling miserable and lonely. Kids in my class were bullying me and I had no friends. I was mainstreamed at the time, being the only blind student in my school.

My French teacher found me and called for the coordinator. My tutor had just gone on sick leave the day before and never returned to our school. The coordinator would act as my tutor from that point on. He sat across from me in the room where I’d been hiding under the coat rack. He held my hands and said: “Is something wrong?” I couldn’t communiicate. Not speak, not move, nothing. I was completely frozen.

Several months later, by the time my now tutor had become aware that I was feeling left out and lonely and being bullied by my classmates, he organized a class conference. Without me there. My classmates were allowed to say what they didn’t like about me. Then I was supposed to change those things. I was supposed to take better care of my personal hygiene and develop better social skills, so that I’d be less curt.

My tutor died in 2016. He cannot read this now, but my old tutor, the one who went on sick leave just before the coat rack thing, can. She found my Dutch website last year. Granted, it has my real name in the URL and this one doesn’t, but still. Maybe I shouldn’t write this, or publish this. But I want to. I want to get this off my chest.

I want to show that it’s not okay to blame a bullying victim for being bullied, even if the victim “elicits” it by acting weird. It’s good to teach a child about social skills and personal hygiene. I won’t deny that. It’s quite another thing to link that to bullying and say “You bring it onto yourself”. That’s what many people around me did say. That’s victim-blaming and it’s not okay.

Another thing I want to say is, if you wouldn’t subject a non-disabled student to something, chances are you shouldn’t subject your disabled students to it. Another boy in my class was being bullied too. My classmates asked for a class conference similar to the one held about me. The boy didn’t want it and this was respected. I was never even asked whether I wanted a class conference, because apparently, being blind, I was so special that I shouldn’t have a say. For clarity’s sake: I think class conferences like thsi one are an example of victim-blaming whether the bullied student agrees to them or not.

Remembering the Onset of My Temper Outbursts

I have been a member of groups on the topic of disruptive mood dysregulaiton disorder (DMDD) for the past year or so. DMDD was introduced to the psychiatrist’s manual with DSM-5 in 2013. It is a condition in which a child or teen is irritable or angry most of the time and has severe temper outbursts on average at least three times a week for a period of at least twelve months. The diagnosis cannot be made in a child under six or a person over eighteen. This being the case, I’m not in these groups because I currently think I may have DMDD, but because I think I may’ve had it as a child.

According to my parents, I was just a little immature emotionally until the age of around seven. I switched schools, transferring from mainstream Kindergarten to a school for the visually impared, when I was nearly six in 1992. In 1993, I started to learn Braille. This is around the time my temper outbursts started. According to my parents, I wasn’t even regularly irritable up to that point. They describe me as a relaxed, cheerful child.

My own memories are hazy. Of course, I remember temper tantrums from before age seven, but what child doesn’t have those at times? Between the ages of seven and nine, my mood got worse and worse. I remember being suicidal at arund the age of eight.

So was this DMDD? We will never know, as the diagnosis didn’t exist back in 1993. Was it, like my parents believe, a way of expressng my frustration with the fact that I was going blind? Was I being manipulative, also like my parents think? Trying to elicit care from my parents and professionals by acting out? Or was it a form of autistic burn-out? Had neurotypical developmental expectations overwhelmed my autistic brain?

Like I may’ve said, my parents don’t believe I’m autistic. They believe I have some traits, but not enough to impair my functioning or warrant a diagnosis. They say I’m just blind and of genius intelligence. And oh, the rest is just me trying to manipulate people for attention. They don’t seem to realize, then, that I, too, suffered from my irritability and anger outbursts.

Angry

Hiya everyone,
My name is Kelly. I am 10-years-old. I am so angry now. I wanna call my mother and shout at her and all that, but the grown-up people say I can’t. I am angry because my parents say I’m angry too easily when in fact it’s them who do stuff like tough love.

I mean my mother says “So you wanna go residential at Bartiméus?”. That’s the school for the blind we go to. So if I’m not being good she’s gonna send me away. She also throws out my toys cause she says I’m defiant because I have too many toys.

Oh and Mrs. B our low vision teacher doesn’t want me to do low vision anymore. Well I don’t care what people think.

I was typing up this memory thingy but then my Internet crashed and I lost the piece I’d written. I will try to share again.

One day a social worker comes by my house to talk to my parents. I dunno who wants it my parents or the social worker. My mother says the social worker had said I’m angry too easily and I need play therapy. I go there during biology class, which is the only interesting class in school. so it sucks. I gotta play with this grown-up man I don’t even know. I wanna flood the water tray and throw out the purple dolls in the dollhouse because ya know, dolls can’t be purple. I don’t know why but my parents take me out of this therpay after four sessions. So why the fuck did they put me into it? I mean I’m not supposed to magically snap out of my anger by four sessions of stupid play therapy am I?

I’m confused now. Yes I’m angry. My parents say I wanna make them miserable. I have stopped caring. They’re gonna put me in residential if I don’t stop playing with my toys anyway and yet I’m suppose to play with this grown-up during biology class. I’m so angry. I don’t know why, cannot write it in English or maybe not even in Dutch either. I’m just pissed off.