Five Years Ago #Write28Days

Posted on by Astrid

Welcome to day four in #Write28Days. Today, I am not going with the word prompt. It is “Make” and maybe I can make the prompt fit into my post somehow (pun intended). Not sure though. Instead, I picked one of Mama Kat’s Writer’s Workshop prompts. It asks us what, if we could give ourself a snapshot five years ago of what our life would be like now, it would look like and how we would’ve felt.

Five years ago, I still resided in the psychiatric hospital with the intention of leaving for my and my husband’s then home by my 30th birthday on June 27, 2016. I still trusted my mental health professionals to a degree and had at least some trust in my ability to live with my husband. The whole saga of my changing diagnosis, or diagnonsense as I called it, hadn’t happened yet.

I just checked my old blog for what I’d written in February of 2016. I admitted, in some posts, that I still struggled with the reality that I hadn’t fulfilled most of my childhood dreams and yet wasn’t a total failure, in that I’d be living with my husband. I didn’t use the word “failure”, but my writing certainly connotes that I should feel like a failure if I need residential care for the rest of my life. Which possiblity I held open to an extent, and which indeed came true.

I mean, I got kicked out of the psych hospital not by the summer of 2016, but by May of 2017. Then lived with my husband for nearly 2 1/2 years, until I was accepted into the care facility.

If I could give myself a snapshot of my life right now, it’d likely be of my room here at the care facility with my one-on-one staff in it. I might give myself an additional snapshot of my and my husband’s house in Lobith to convey that we’re still together.

Honestly, I have no idea how I’d have felt about these snapshots back then. I mean, four years ago is easier. Then I’d certainly have been elated at knowing I’d eventually end up in long-term care despite all the attempts my psych hospital staff took to prevent me getting the care I need. But in early 2016, I may not have seen this need.

Probably, the most likely emotion I’d have felt is mistrust. I mean, how could I possibly ever get the level of care I never even openly admitted I needed? I mean, I never asked for one-on-one, but got it anyway. How is it possible that people truly saw this? I can hardly believe it now, let alone five years ago.

Looking back at my life five years ago, however, makes me so intensely appreciative of the life I have now! I thank the Lord for sending my former support coordinator, the Center for Consultation and Expertise consultant and my current staff into my life, as well as the funding authority people in charge. Without these people, I honestly don’t know where I’d be right now.

Mama’s Losin’ It

New Normal

Posted on by Astrid

Earlier today, Stevie Turner wrote a great piece on adjusting to the new normal of serious illness. In her case, it’s cancer. I have so far been able to avoid serious physical illness, but I get the idea of adjusting to a “new normal”.

In 2007, as regular readers may know, I suffered a serious mental health crisis. It was probably autistic burnout, though it got various labels over the years. I was 21 at the time and attending university and living on my own.

In the early months of my psychiatric hospital stay that followed the crisis, I was convinced I could go back to college, university or work and living more or less independently if I just had a little more support. I rejected the first place offered to me because I wouldn’t be allowed to cook in my own apartment. This, looking back, is ridiculous! After all, now, thirteen years later, I live in a group home with 24-hour care. I cannot cook, clean or even do some personal care tasks without help.

Now to be honest, I at the time didn’t have a realistic picture of what living in my own apartment in supported housing would be like. The training home I went to before living independently, had a 1:4 staff/client ratio during most of the day. That’s pretty high and it allowed for staff to help with most household tasks. If I went into supported housing in my own apartment, I’d be expected to clean it all by myself. The fact that I wouldn’t be allowed to cook, was understandable, as there wouldn’t be the staff to supervise me.

Then again, I thought I could handle a low staff/client ratio. It was 1:7 on week days at the resocialization ward and 1:14 on week-ends. I did okay with this. Now, not so much. The staff/client ratio here is 1:6 at the least and I get one-on-one for several hours during the day.

I often look back at myself before my crisis. When I was eighteen, I attended mainstream high school despite being blind. The autism or other issues hadn’t even been diagnosed yet. I coped with classrooms of 30’ish students with just one teacher. Sure, I had meltdowns multiple times a week, sometimes multiple times a day, but I somehow survived. Now, I can barely handle having my coffee in the living room without my one-on-one present to calm me if I start melting down. Oh my, this feels sick. I feel shame admitting this. Yet it’s my new normal. Whether I’m just lazy and manipulative and unwilling to be independent or I’m genuinely unable, it’s the way it is.

I often feel sad when I am reminded of my old life. I often dream that I go back to university. I most likely never will.

That being said, I’m also grateful for what I do have. I am forever grateful that my staff and behavior specialist saw the need for one-on-one. I am grateful whenever I can do a small activity, like this morning I made clay punch-out figures. Back in the psych hospital, I often couldn’t blog even once a week. Now I blog almost everyday.

The most frustrating aspect of my “new normal” is not knowing why. I constantly second-guess myself, wondering if I’m truly such a terribly manipulative attention-seeker. That thought is scary. Worse yet is the fear that this might be some type of neurological thing, that I might actually be deteriorating. There is apparently no reason to think this, but it’s still on my mind. Then again, it is what it is and I’ve got to deal with it.

When I Was Fifteen

Posted on by Astrid

One of Mama Kat’s writer’s workshop prompts for this week is to explain how a parent or sibling would’ve described you at the age of fifteen. What an interesting thing that Mama Kat should mention age fifteen!

I turned fifteen in June of 2001. By August, looking back, I was close to insane mentally. This was the summer when I first realized I had alters inside of me, although I didn’t know what they were at the time. I just heard some type of voices that were and at the same time weren’t mine.

Neither my parents nor my younger sister knew this at the time. Still, they did realize something was up, if for no other reason, then because I didn’t care about school. I had always been a pretty studious kind of child, but this changed by November or December of 2001.

In addition, I was a rather angry, moody child. I had suffered from depression on and off since age seven or so, but it was particularly bad at age fifteen. I even made suicide plans several times during that year. My parents, being the type to dismiss mental health issues, felt I was just attention-seeking, of course.

My life turned around in a sort of positive way a few weeks before my sixteenth birthday, although no-one saw either the change or how positive it was at that point. On June 16, 2002, my father called me autistic as an insult. This led me to search the Internet for autism and to discover I may be on the spectrum myself. Although it’d take nearly five more years before I was diagnosed, in part because my parents and teachers didn’t believe me, I see this as a pivotal point in my life.

The day after this, June 17, I finally disclosed to my teacher what had been bothering me over the past year. I sugarcoated it a little, not mentioning the voices or suicidality or autism for that matter. I did tell him I was struggling with being blind in a mainstream school and that I realized I had been less than good of a student lately.

My father, at the time, worked at my school. My teacher told him that I had disclosed something to him, but he refused to tell my father what it was. This led to a really traumatic experience, because my parents demanded to know too and they weren’t kind about it at all. I am pretty sure they just tried to gain fuel for their idea that I was one giant attention-seeker.

Many years later, my parents used many of my struggles at age fifteen to “prove” this very point. I can see their perspective, sort of. Thankfully though, my current professionals don’t go along with it.

Mama’s Losin’ It

A Favorite Childhood Gift

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts is to share about a favorite Christmas gift you received as a child. Here in the Netherlands though, Christmas isn’t that popular for gift-giving. Instead, we celebrate St. Nicholas on December 5. I can’t remember that many gifts I received for St. Nicholas and the entire celebration was one big stressor once I no longer believed in St. Nick. We celebrated it until I was 20 in 2006. Then in 2007 I was in the psych hospital and my parents didn’t want to risk inviting me. That’s how the tradition ended.

The other major gift-receiving opportunity was and still is, of course, my birthday. It is on June 27, so pretty much as far from Christmas as you get it. Still, I’m going to share about a favorite gift I received for my birthday as a child. Mama Kat twisted the prompt too by listing several things, so oh well.

I can’t remember whether I had invited anyone to a birthday party when I turned eleven. After all, I was pretty much friendless at the time. However, I did celebrate it with my family. The main gift I remember getting was a Barbie doll with aerobic attire. I named her Teresa. I loved the doll, even though I knew already that eleven was a little old to play with it.

Later that summer, my mother took me on a “mother-daughter walk”, which was mainly an opportunity for her to tell me the school had recommended I go residential there. She claimed the reason was that I had behavior problems, which she attributed to my having too many toys. I can’t follow that train of thought other than through some idea that I was so spoiled I somehow felt entitled to have tantrums. That wasn’t true, for clarity’s sake. In any case, my mother regretted having given me the Barbie doll.

I cherished Teresa even more from that moment on. When, during the following school year, I’d have a meltdown, my mother would often pack a random number of toys and claim to throw them out. (In reality, she hid them in her room downstairs.)

The followign year, when I turned twelve, I felt so ashamed for still playing with Barbie dolls that I claimed they’d aged with me, so it was okay. Most of the dolls are still with my parents, I think. I think at one point I broke Teresa’s leg though and had to actually throw her out.

Mama’s Losin’ It

A Winter Memory

Posted on by Astrid

One of Mama Kat’s Writer’s Workshop prompts for this week is to share a favorite winter memory. Now I don’t personally like winter. I however have this weird kind of love/hate relationship with it and especially with snow. It looks beautiful, but my already almost nonexistent orientation and mobility skills go out the window entirely when it snows. Still, I am going to share a memory involving snow. It’s not really a cherished memory, but I’d really like to share it.

On Friday, November 25, 2005, the eastern half of the Netherlands was suddenly hit with a big snowstorm. I lived in Apeldoorn in the central-eastern part of the country. During the week, I attended a rehabilitation center for the blind also in Apeldoorn at the time. It was a residential center, because blind people from all over the country went to it. That being said, the center closed on Friday afternoon for the week-end.

The snowstorm started at around noon. I left the center to go to the bus stop for the bus home at around 1PM. I hardly made it to the bus stop, only to find out public transportation had been canceled because of the weather.

I walked back to the center to call a ParaTransit taxi home. They first informed me it might take several hours for the taxi to arrive, then called me to inform me all transportation had been canceled.

By 4PM, my sister offered to come to the center by tandem bike to take me home. This sounded crazy even to me, but she persisted.

I need to add here that, like I said, clients of the center came from all over the country. The day staff were calling the manager by this time to request clients who lived out of city could stay at the center for another day. This would’ve been doable, as the center did have beds for during the rest of the week and the staff offered to get them some takeout food and stay for the night. The manager though refused.

By 4:30, a staff had decided to drive me home. My sister did end up cycling through the snowstorm to the center, but thankfully she didn’t have to make the way back with me on the tandem as well. That would’ve been nearly impossible, as I struggle to put in enough strength to do my part of the biking even in normal weather.

Some clients ended up staying with staff for the night, including blind staff who didn’t really feel comfortable with it. Of course, the manager didn’t take in any clients. Some other clients ended up being taken home by taxis in the evening. One of them made it home to southern Limburg, which is normally about a 2 1/2 hour’s drive, at five o’clock in the morning. The taxi driver ended up hitting the crash barrier on the way back north.

Needless to say the resident council, which I was a member of, filed an official complaint about the manager’s way of handling the situation. The man from southern Limburg was the resident council representative for the broader organization’s client council. He and the clients who’d had to stay with staff, were offered a sheepish apology and some flowers. The staff involved didn’t even get those.

Now that I’ve written this post, I realize November isn’t technically winter. Let’s call this a snowy memory then.

Mama’s Losin’ It

Six Is a Blank

Posted on by Astrid

Today, in The 365 Journal for Empaths and Healers, I came across a prompt that asked me what the six-year-old version of me would think about my life today. This is really hard. I have very few direct memories from before the age of around eight. Those I do have, are clouded by the stories my parents told me.

I mean, they said I was a very cheerful, laid-back child before the age of seven. I am pretty sure I wasn’t. Lisel (formerly Little), my 5-year-old insider, holds some very distressing memories. These concern both my time at the mainstream school Kindergarten and my time in hospital at the age of four.

Then six is a blank. I do have a six-year-old insider, but she most likely formed much later. Same for seven. Suzanne is seven, but she only feels she has to grow up too quickly.

To be honest, yes, six is a complete blank. While I do have some memories of age five and seven, I don’t have any of the year I was six. I know I transferred to the school for the visually impaired about six weeks before my sixth birthday. I know I laid the first stone for a new care home for visually impaired children just before my sixth birthday. Then I remember learning Braille with giant dots, but that wasn’t till age seven.

I am tempted to think six was uneventful. Then again, when I was asked to recall a memory from age four for an interview at age seven, I didn’t mention going to Kindergarten, being in hospital or any such to an adult significant events. Instead, I recalled my getting my favorite doll at age three. It isn’t that significant events just aren’t stored in a child’s memory, since a classmate was very clear about the year he developed a brain tumor and lost his sight. Could it be I dissociated at such an early age already? Or does this mean my going to mainstream school, being in hospital etc. just didn’t have the impact I think they had now? I’m not sure.

What I Wanted to Be When I’d Grow Up #Blogtober20

Posted on by Astrid

Today’s prompt for #Blogtober20 is “Wannabe”. I originally had no idea what to write for it, until I saw Mandi’s own post mentioned writing about what she wanted to become when growing up. Mandi chose against this theme, but I’m going with it. I can’t remember whether I ever covered this topic on this blog – I’m pretty sure I did on one of my older blogs, but it might have been here too. Even if I did cover the topic here, I have a lot of new’ish readers, so it may still be interesting.

I remember in Kindergaten we had some type of celebration that included a “fortune-teller” with a crystal ball – of course, it was another grade’s teacher. I remember she asked us all what we wanted to be when we’d grow up. Most girls wanted to be a princess, of course. I can’t remember what I said I wanted to be.

When I learned to write, however, I knew pretty soon that I wanted to be a writer. My parents, realistic as they were, told me up front that writing wouldn’t earn me a living unless I was a real good one. So for money I usually wanted to be a teacher.

I originally wanted to teach small children, of course, because I myself was still young. When I got to the later elementary grades, I made up my mind and wanted to become a high school teacher. Or a professor even. I remember proudly telling people when I was twelve that later I wanted to be a Dutch-language linguist. Later, I wanted to become a mathematician.

This was, at least, what I told others when my parents or teachers were present. Secretly, I made plans to become a psychologist. I wanted to help children or adults with my kind of problems, which I was well aware of by that age.

When I was in my later years of high school, the thought of becoming a psychologist remained at the back of my mind. Openly though, I chose to go the “safe” path and applied to become an English major. Then I made up my mind at the last moment and chose to take a gap year to go to the rehabilitation center for the blind.

I got the opportunity to study psychology, albeit not at university, in 2006. I jumped at the opportunity and did eventually earn my foundation (first-year diploma) in applied psychology. I passed communication skills only if I promised that I wouldn’t continue in this field though. I know, psychology isn’t the best major for an autistic. But I didn’t want to do something I didn’t like, so I picked linguistics as my university major with the intent of doing my minor in speech and language pathology. As most of my readers know, it didn’t work out.

I still intend on someday taking some more psychology or pedagogy classes. I will most likely never work at any paid job though. Still, my original dream of becoming a writer, has at least partly come true.

#Blogtober20

My All-Time Favorite Food

Posted on by Astrid

I was feeling a little down on Sunday, so I checked out the gratitude section of the book Journaling With Lisa Shea. This is really a collection of ten 32-day guided journals and an introduction to journaling. I bought the entire thing for a deal price on Amazon several years ago.

I already covered some topics from this section before, but one I didn’t write about is my favorite food. The prompt asks me to recall what favorite food makes me brim with joy and sigh with delight. It goes on to ask whether I can remember eating it for the first time.

Well, my all-time favorite food has to be Domino’s pizza! I am not 100% sure whether this was the first time I ever had it, but I think it was. It was sometime in late 2010 or early 2011. My husband, then still my fiancé, lived in student accommodation in Kampen, where he studied theology. His studio was real close to the train station, the river IJssel, and several snack corners and fast food restaurants. Including Domino’s.

I can’t remember which pizza I took that first time. It might’ve been during my six months or so of trying to pass as a vegetarian to my fiancé, who was a vegetarian at the time. I might also have taken one of their chicken pizzas. I think I did that. I probably also chose red peppers as an extra topping, as I was and still am a lover of very spicy food.

Nowadays, I almost always choose a chicken kebab pizza, but I think they didn’t have that one back then. I also always look at the new and noteworthy category, because sometimes they have truly delicious pizzas. I particularly remember one called something like Chicken Zanzibar, which had a piri-piri swirl on it. I topped it off with extra red peppers. Since I took a large pizza and didn’t have the monstrous appetite I’d expected, I left my husband a slice. He pretty soon texted me with a list of swear words about how spicy the pizza had been. Even thinking back to that makes me laugh.

The Kindness of Strangers

Posted on by Astrid

Okay, it’s past 2:30AM and I just said I wasn’t going to blog right now, but CrunchityFrog’s prompt for today (well, yesterday) has me thinking. This is supposed to be a daily prompt thing, so I might join in more often. Anyway, the prompt is to write about the kindness of strangers.

I’ve probably written many times already about overbearing, intrusive strangers. Particularly when I was a teen, I didn’t realize that my autistic behavior (of which I was unaware that it was autistic) combined with my blindness often caused people concern. I am more appreciative of people’s attempts, even awkward ones, to help now. That probably changed on the evening of November 2, 2007.

Okay, I’ve shared the story of my mental crisis probably more often than anyone cares to know. Today I’d like to focus on the kindness of the people who helped me stay alive and safe.

As regular readers of my blog will know, I was in a suicidal crisis that evening. I had left the training home I was a former resident of and had hoped to find safety in, because I was told the staff had no responsibility for me and I was to leave.

I took the bus to the city’s train station, talking into my former care coordinator’s voicemail. I told her I was going to take my life that night. I was completely unaware that people could hear me until a woman across the aisle from me started to talk to me. She told me that the bus driver had heard me, which initially only caused greater panic. She kept saying over and over again that he was getting help for me. (“Help”, of course, came in the form of the police, as is customary here in the Netherlands if someone’s safety is in question.) I was in utter shock, constantly crying and very overwhelmed. I am forever grateful for this woman’s kindness. And of course for the bus driver’s. It most likely, after all, wasn’t within his duty to report his concerns to the police.

Looking back, I realize I rightfully worried random people on the streets many times before and they were kind enough to help. Even if “help” meant to call the police. My parents often felt that people were just stupid, assuming that a blind person shouldn’t be traveling independently. Some were, indeed, but in some cases my parents were stupid, assuming that I was just blind.

Millennium: Growing Up Blind in 2000 #Blogtober20

Posted on by Astrid

I’m a bit late to publish my #Blogtober20 post today. Well, not as late as yesterday, but then I already had a post up in the afternoon. Today’s prompt is “Millennium”.

Let’s see… we’re now 20 years into the new millennium, which I realize isn’t even the “new” millennium to some adults right now, as they were born in 2000 or later. I always find it surprising that there are people who will be legally old enough to vote in next year’s national election who weren’t even born when politician Pim Fortuyn was murdered on May 6, 2002. Yeah, I’m getting old!

In 2000, I turned fourteen. I was in my first year at a mainstream grammar school. I had already decided I hated it, but my parents and teachers had decided that, if I failed, I’d fail within the first three months and those were up. Woohoo, my mainstream education was a success! Okay, it was, since I did graduate with pretty good grades in 2005, but yeah.

In January of 2000, I suffered a bad case of the flu. I rarely got the flu back then and still get it only once every five years or so, so I remember. In fact, I’m not 100% sure of this but I think it was my only time being off school sick in my entire grammar school career.

In February, my outreach teacher for the visually impaired came to talk to my classmates. They had already decided they didn’t like me one bit. In fact, when the teacher asked casually what having me, a blind student, in their class evoked in them, they didn’t think of a single positive. They started saying that I was being favored by the teachers. They also resented the need to help me get around. This instilled in me the feeling that I had to make up for my blindness in some way by being extra, well, anything.

I had read a book called Het instituut (which translates to The Institution) by blind comedian Vincent Bijlo in 1998. This book is about a boy who goes to a boarding school for the blind and his teachers constantly instill in him the idea that the “sighted school” is really hard and that he’ll need to compensate for his sight loss. For all I knew, my parents and teachers at the grammar school agreed: I was an inherent burden due to my blindness unless I showed my classmates I was more independent, nicer, more hard-working and in any way better than them. Then when I tried to work hard and got good grades, my classmates decided I must be favored by the teachers.

My idea about myself as an inherent burden on the world around me due to my blindness didn’t change till I went to an international computer camp for the blind in 2002 and discovered the English-language Internet in that same summer. It never completely disappeared though.

Later in the year 2000, my classmates started openly bullying me. Again, my parents and teachers blamed me. I was too dependent, too unsociable, too much of a burden in general. I had ruined the only friendship I had developed (which in hindsight was based on pity mostly) by getting my “friends” an only average grade in a music performance in October. Though these girls didn’t actively bully me, they mostly ignored me.

I realize, looking back, that the attitude towards people with disabilities was generally very hostile back in the late 1990s and early 2000s, when I was growing up. I mean, I bullied a girl with a visual and intellectual impairment on the special needs bus to the school for the blind in the late 1990s. Though my parents disapproved of it, both they and my teachers didn’t do much to stop me. When this girl was dying of a brain tumor, my parents even openly criticized her religious parents’ hope that the girl would miraculously survive.

I can only hope that, with more children with significant disabilities being mainstreamed nowadays, that attitudes have changed.

#Blogtober20