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.

Not Quite California Dreamin’ #SoCS

SoCS Badge 2019-2020

When I was a teen, I dreamt of going to the United States in my third year of college. After all, I was going to be an English major, choosing American studies as my specialty. Then in my third year, I would be incredibly motivated and talented and would be allowed to go on an exchange student visa to the United States.

I had already picked my preferred cities to go to. Most were suburbs of Boston. First, it was Lynn. Then Somerville.

Then, at one point, I got obsessed with Columbia, Maryland, a suburb of Baltimore. Then, finally, Silver Spring, MD, a suburb of DC.

None of these were college towns as far as I know, but I always dreamt of going to college in the city and living in the suburbs eventually. Because, after all, with my incredible talent (ahum) and affirmative action, I calculated that I’d be allowed to stay for some professional career and never go back to the Netherlands again.

Now that I think of it, it’s interesting that I never dreamt about going to California for my studies. I would say that most people choose either the east or west coast. At least people from Europe most likely do, with the Midwest, South and Great Plains being far more conservative. I just envisioned living in New England or the DC area.

And just for the record, it all never came true. I never even majored in English at university. I still haven’t been to the United States, though I hope to visit there someday. Mostly to meet some people I know.

This post was written for Stream of Consciousness Saturday (#SoCS), for which the prompt this week is “Cal-“. I could’ve written about calendar calculation, calories or Calibre (an eBook management tool). Instead, some of the other participants’ posts inspired me to write about my American dream.

Profession or Identity? #Write28Days

Today I finally remembered to check out the #Write28Days Facebook group and jump back onto the challenge bandwagon. The prompt for today is “Profession”.

I immediately thought of all the career paths I had envisioned for myself as a teen. When I was sixteen, I was planning on becoming an English major in college, choosing to specialize in American studies and was sure I’d leave for the United States in my third year. I actually half-joked that I’d obviously find employment there and never come back to the Netherlands.

Now of course I never even made it to being an English major. I never made it to my third year in college either and haven’t been to the United States as of yet. I’ve never been employed, in fact.

For some time, I listed my old blog as my place of employment on Facebook. Now because I’m not keen on my family reading my blog, I no longer list it on my personal profile. I don’t have work listed on my FB profile at all.

Today, I was discussing my personal strengths profile, which the mental health agency is supposed to have on file for each client, with my community psychiatric nurse. It scared the crap out of me. In the plan, you’re supposed to write about your former abilities (before becoming mentally ill or whatever), your wishes and ambitions and your current abilities. I immediately thought big, thinking that since I used to go to university before my autistic burnout and lived with my husband before coming to the care facility, I should probably want to go back to these. My nurse said I can think small too. I later thought of the fact that I used to be stable on a much lower dose of daily medications and would really like to go back to a lower dose of my antipsychotic at least. That’s a valid ambition too. I don’t really need to find a profession.

In fact, I am also reminded of last week’s Hour of Power show, in which the preacher talks about one’s title vs. one’s testimony. In the Dutch show, Carola Schouten talked about her title as the minister of agriculture and vice-prime minister. She contrasts this with her identity in Christ. I love this and felt an interesting connection to her, even though with respect to profession, she is infinitely more successful than I am. With respect to identity though, we’re both children of God.

Learning Never Stops #Write28Days

Okay, here’s my post for #Write28Days for today. I know I already wrote a post today and at first I wasn’t inspired to write another. The prompt word for today is “Learn”. This at first didn’t inspire me, until I read Carrie Ann’s response. It completely resonates with me!

As regular readers of my blog will know, I did college for one year in 2006-2007, doing an orientation in psychological and social studies. I only passed the year because the communication skills instructor had given me a passing grade on the condition that I never continue into this field. I was diagnosed with autism a few weeks before the dreaded communication skills exam. Now I did poorly on the exam and don’t really want to use autism as an excuse. Other autistics, in fact, can become social workers or psychologists or work in other such fields the program would be training me for. But I cannot.

Then I transferred to university to become a linguistics major, only to drop out two months in. I took a few psychology classes at Open University in 2009, of course skipping the practice ones and doing only theoretical ones. I think that instructor back in 2007 was right, after all.

Despite the fact that I haven’t been in formal education in over eleven years, I however still learn. At times, it feels like I don’t. I mean, I am not in any type of training or education.

The last time I was in formal training, was to learn to use the iPhone in 2017. I fully expected I would no longer be capable, but thankfully I was.

And now, having become a Christian within the last two months, I am trying to learn all about the faith and memorize scripture. It’s hard, but I trust that with God’s help, it is possible.

Carrie Ann truly motivates me to keep trying to learn. I really want to learn to write better. I also still want to take some free classes. I mean, ideally I’d sign up for some university courses in education or psychology, but these usually require a prior college degree. Maybe I can use FutureLearn or the like. In any case, I really hope that, like Carrie Ann says, learning never grows old even when I do.

New Normal

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.

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

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

Home Sweet Home

This week, Eugi’s weekly prompt is “Home sweet home”. I’ve never participated in this prompt before, but I thought I’d now.

Two weeks from now, I’ll be living in the care facility one year. It feels closer to home than any of the homes and facilities I’ve lived in before did. That feels weird. My parents’ house felt like home, but that’s just because I knew nothing else. My parents felt as safe as possible, but again that was because I knew nothing else.

Then I went into the training home. That was temporary, as you were supposed to live there for at most two years while training for independent living. That’s what I did eighteen months later. I cried my eyes out the first day, in front of my mother, who got angry with me.

It felt horrible to know that this was it forever. I mean, for at least the duration of my university studies, so four years, I’d live there. Then I’d live in a rented house on my own. It completely overwhelmed me.

As regular readers know, it didn’t last. Three months in, I landed in a mental crisis and was hospitalized. Though I stayed in the psych hospital for 9 1/2 years total and for over four years on one ward, it never felt like home. I knew it was temporary, after all.

And then I got kicked out. I lived with my husband in our rented house in the tiny village for 2 1/2 years. Even though I got by okay, it never felt good.

And now I’m here. I got that overwhelming feeling that this is it forever in the first weeks too, but this time, it was good.

I struggle to believe that this is not yet another temporary living arrangement or one in which I cannot cope. I act in and out a lot, probably to somehow “prove” that I’m not suited to this home. That I’m not suited to any home in the world. That there is no home sweet home for me.

Yet my staff so far say that I can stay here for the rest of my life. That, too, feels kind of overwhelming, but like I said, in a good way.

I also of course have my and my husband’s home in Lobith. That one still feels a bit odd to me. I never really lived in it, since we bought it two days after I moved into the care facility. In fact, I struggle to consider it my house too. When I write about it, I often write that it’s my husband’s house, then correct myself and add “and my”. I want to keep a connection to that house too, but it doesn’t feel like home.

Roles I Want to Play in the Future

A few weeks ago, I wrote a post about the roles I play. This post was inspired by the first prompt in the journaling workbook The Year of You. The second prompt is to write about the roles you would like to play in the future. Here goes.

1. I want to be a student. I don’t mean that I want to go back to college full-time. That place has been passed and I’ll never revisit it. However, I would definitely like to study at the Open University or some other distance-learning college again. I considered signing up for the developmental psychology course at the OU for this fall. I’m not sure I’m ready though.

2. I want to be a writer. Of course, I am a blogger already and I have one piece of mine published in an anthology. However, I really want to publish more. I’m not so sure I’ll ever write my memoir as I was some years ago, but some short pieces should be doable.

3. I want to be a volunteer. I really hope to do some type of community service, ideally putting my knowledge of disability and mental health to use. For example, maybe I’ll do a recovery course again and maybe in the future even lead one.

4. I want to be an advocate. I am already with this blog, but I really want to be more of a voice for the disability community in the Netherlands.

5. I want to be a crafter. That is, I want to be able to find a hobby that I enjoy. I no longer have it as a goal that I’ll be able to do it independently.

6. I want to be a guide dog owner. I really hope to be able to get a guide dog sometime in the future. I’m not sure that is a realistic goal, but I can dream, right? I mean, ideally, I’d have a psychiatric service dog/guide dog combo. That would be awesome!

That’s it so far. Last year, I might’ve added wanting to be a homeowner, but that goal can be crossed off.

What roles would you like to play in the future?

A College Memory

One of Mama Kat’s writing prompts for this week is to write about a college memory. I wrote about the very same topic on my old blog in 2016, some weeks after it was also a prompt on Mama Kat’s blog. I reread that post just now and was actually going to share the exact same memory. Now I don’t think most people who read my blog now, read my blog then. Still, I want to choose a different memory.

In 2016, I shared the memory of my first day at Radboud University as a linguistics major. I had a massive meltdown upon entering the lecture hall then, because I hadn’t known that there were over 200 students in there. I left and called my support coordinator, who took me to her office. This was the first time the psychiatric crisis service was called on me, but they said I wasn’t “mad enough” (my support coordinator’s words) to be admitted to the hospital.

Roughly eight weeks later, on October 30, I had my last day at Radboud University. I didn’t know it at the time, of course, since I wasn’t admitted to the mental hospital until November 3.

I had an exam that morning. It was my first introduction to language and communication exam. Passing this exam wouldn’t award me any credits, as the credits for the course weren’t applied until you passed the second exam some weeks later.

As always, I took a ParaTransit taxi to the university that morning. I think I had a meltdown right as I went into the building the exam was supposed to be held in, but I’m not 100% sure. I definitely had a meltdown when I was finished. The taxi driver driving me home threatened to dump me at the police station.

Regardless, I did sit in on the exam. Introduction to language and communication is basically a course in dissecting words into morphemes and sentences into their different components (no idea what those are called). That’s why the course was also sometimes called universal grammar.

Several months later, when I was home on leave from the hospital, I retrieved my E-mails. Back at the hospital, I sat down to read them. Among them was an E-mail from the director of studies telling me that the intro to lang and comm instructor had been missing me so had I dropped out? I also found an E-mail from administration notifying me of my grade on the exam: I scored 85%.

Several months ago, when my husband was clearing out the attic for our move to our current home, he found a letter from Radboud University. It was my provisional report on whether I could continue my studies or not. “Your studying results are grounds for concern,” it said. I’m so glad I never saw this piece before.

Mama’s Losin’ It

Reflecting on My Life: 2003

Last night, I couldn’t sleep. I was looking for some link-up parties to join in and came across the Life This Week linky. In this week’s edition, host Denyse shares her memories of the year 2003. As this is my first time participating in the linky, I should really start my story from the beginning on, but for some reason, I can’t.

I may have shared this before, but in secondary school, I always had this superstition that life ran in circles. There’d be a year of struggle and crisis, a year of renewed hope and finally a year of disillusionment, after which I’d spiral back to struggle and crisis. The year 2003 was a year of disillusionment.

In 2003, I was sixteen. I turned seventeen at the end of June. I was in the tenth grade for the first half of the year and in the eleventh for the last half.

In the summer of 2002, I had barely moved up a year. My grades weren’t that good and I only moved up because I worked very hard the last few weeks of the year. I had been struggling with feeling like an outcast due to my blindness the entire 2001/2002 school year. That was to change by late 2002, or so I believed. My high school tutor promised me he’d help me feel better.

What he did was come up with a social skills assessment for blind students and have the teachers fill it out. That was no good for my self-esteem, as I showed considerable weaknesses. No-one knew at the time that I was also autistic, even though I suspected it.

The year 2003 was the year I started to learn about myself from a possibly autistic point of view. Even though I had started suspecting I was on the spectrum in mid-2002, I didn’t feel comfortable joining online support groups for it till 2003.

This was also the year I expanded my horizons where it came to using the Internet in general. I had gotten an Internet connection in May of 2002. By April of 2003, I started keeping an online diary on DiaryLand, which several years later morphed into my first WordPress blog.

In the summer of 2003, I attended the International Computer Camp for blind students in Switzerland. I had attended it the year before, when it was held in England, too. This year, I felt a bit disappointed in the end, because it didn’t provide me with the cathartic experience I’d felt the year before.

In 2003, I also explored fictional storytelling as a way of expressing myself. I was experiencing some significant selective mutism at the time, which I could circumvent by pretending I wasn’t talking about myself. This is how my “mirror image”, Kirsten, came to be. She is one of my main alters to this day.

Finally, this was the year I was first starting to explore future planning. Here in the Netherlands, students with disabilities attending mainstream education didn’t get any type of special transition planning at the time. I was expected to just get by and go to university straight out of high school in 2005. In 2003, I started to doubt this would be a success, but I didn’t voice my doubts yet. As it is, I didn’t actually make it clear that I wasn’t going to university right out of high school until April of 2005.

Where were you on the path of life in 2003?