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.

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 Recovery Means to Me

Yesterday, one of the daily word prompts here on WP was Recovery. I didn’t see it till it was already time for me to go to bed, so I’m writing about this word today. Today, I am sharing with you what recovery from my mental health conditions means to me.

First, there are a few things recovery doesn’t mean to me. Recovery isn’t the same as being happy all the time – that’d be an unrealistic goal. It also isn’t the same as independence. I don’t intend on ever living independently again and there are few things with respect to life skills I’d really still want to learn.

Recovery does mean no longer being scared when I’m able to do something independently. Currently, I constantly expect people to overestimate my abilities, so when I can do something independently, I think people will expect me to do it all the time.

Similarly, recovery means no longer being afraid of my feelings, both good and bad. Affect phobia is a thing, you know? I currently tend to dissociate from my feelings a lot. I also often counter joy or sadness with anger, because that’s the easiest emotion for me to express.

Recovery means having a relatively stable sense of self. I don’t necessarily want to integrate all alternate parts of my personality, although it’s okay if it happens spontaneously. We do want to achieve cooperation among ourselves. This also means being able to accept the seemingly opposite sides of me.

Recovery means, as a result of the above, no longer needing to rely on negative coping strategies such as self-harm, rage or impulsive behavior. I will no doubt still have times when I indulge into an unhealthy habit such as overeating or buying stuff I don’t need. That’s okay, since I don’t think total self-control is a realistic goal. I just don’t want to use these as coping skills when feeling overwhelmed, and I no longer want to engage in self-harm at all.

Lastly, recovery means no longer expecting people to abandon me if they know the real me. Currently, I have such a negative self-image that I believe any positive aspects of me are a façade and at the core I’m so wicked no-one should want to be associated with me. Overcoming this is probably the hardest thing to achieve, as expectation of abandonment is such an ingrained thought pattern. I really hope to someday stop seeing myself as one giant manipulator though.

In addition to the word prompt, I am linking up with #LifeThisWeek and #SeniSal.

Some Might Say: Judgments About Me #Blogtober20

Okay, I said I wasn’t going to take part in the #Blogtober20 prompts anymore, but this one did speak to me. Today’s prompt is “Some Might Say”. People can be incredibly judgmental. Today, I will write about some things people have said about me that indicate they are clueless or insensitive or both.

The first things people notice about me, are my blindness and the fact that I’m relatively well-spoken. This often leads people to assume that I either should be able to be independent or that I am obviously not because I’m blind.

My parents and other people who are relatively educated about blindness, often assume that I should be able to live independently and be employed. Even if they are fine with my “choice” of not pursuing a career, their idea of me is to live independently. Some people who don’t know me that well, ask whether my husband and I have or want kids. To me, it’s obvious that we don’t, but then again that may be internalized ableism. After all, I for one am not able to take care of kids, and besides I value my freedom. Others with my disabilities may definitely be able and willing to parent.

Another judgment I often get is that my marriage isn’t strong because we don’t live together. My last psychologist at the mental hospital even dared to say my marriage isn’t worth anything if I don’t intend on living with my husband. Well, when we got married in 2011, we had zero intention of living together. I was on the waiting list for a permanent workhome for autistic people. It is only because that didn’t work out, that my husband asked me whether I wanted to live with him. And just so you know, our reason for getting married is that we love each other and want to show each other that this is for life. And in my opinion, that’s the essence of marriage. Okay, I know that at least a third of marriages end in divorce, but I hope that if couples get married, they at least hope this is going to be for life.

Like I said, some people, particularly strangers who are clueless about disabilities, think that it’s perfectly understandable that as a blind person I live in a care facility. This misconception often feels as uncomfortable to me as the idea that I am or should be independent. I used to want to educate people that most people who are just blind, can live independently. I no longer do this though. Not only is it none of random strangers’ business that I’m not just blind, and isn’t it my obligation to educate, but I might also be adding to the stigma I fought so hard against as a teen.

By this I mean the National Federation of the Blind’s philosophy that blindness shouldn’t hold you back. It in fact used to say that the average blind person is just as capable as the average sighted person. That led to the idea that, unless you had severe or multiple other disabilities, you were to be pushed to achieve whether you could or wanted to or not. That just doesn’t work for me and it doesn’t work for many blind people.

#Blogtober20

X-Patient: Psychiatric Rehabilitation and the Recovery Movement #AtoZChallenge

Okay, welcome to my letter X post in the #AtoZChallenge. I’m not really motivated for this one, but I don’t want to give up on the challenge either. My topic today doesn’t really fit in with the rest, but well. Today I’m writing about what it is like to be an ex-psychiatric patient. In the anti-psychiatry movement, some people choose to write this without the E, so it counts.

When I first heard of psychiatric rehabilitation around a year into my psychiatric hospital stay, I hated the entire concept. It was all based on training people to be more independent whether they wanted to or could do this at all. I knew already that I needed long-term care, so I was like: “Didn’t I just complete 18 months in a training home only to have it fail?”

Then, a few years later, I heard of the recovery movement. Unlike psychiatric rehabilitation, this is entirely patient-led. I signed up to participate in a recovery course. What surprised me immediately was the fact that my mental hospital chose to only allow those staying there as inpatients on the course. They later started a course for outpatients too. I loved this course. Going into long-term care wasn’t frowned upon but seen as a means of getting my life back on track. Unfortunately, that’s not how most professionals, at least on my last unit, saw it.

A few weeks ago, I watched a short video on a Center for Consultation and Expertise case in which the recovery viewpoint was misapplied to an autistic man. Indeed, I’ve never felt that concepts like “rehabilitation” apply to autistics. I mean, the idea that we all want a meaningful life, is good. However, considering a meaningful life as the same as independent living, is in my opinion rather misguided.

Feelings After Watching a Documentary on the Blindness Rehabilitation Center

Today, I got a subscription to see past episodes of Dutch television programs mostly so that I could see a documentary series called Five Days Inside. It’s where three presenters rotate to visit mostly health care settings or other institutions that are not commonly shown to the general public. The episode of four weeks ago was about the blindness rehabilitation center I attended in 2005. I actually still recognized some of the staff talking to the presenter from when I went there.

Watching it had me very emotional. I don’t know why. I guess because most of the clients who were featured, some roughly my age when I attended the program, are so optimistic about their future despite sometimes having recently lost their vision. When I attended the program, I often felt way ahead of these people and way behind of them at the same time. After all, I had pretty good Braille reading skills. My reading speed at the start was more than twice that which is the ultimate goal of the rehabilitation program for adults. As I learned today while watching the episode, some people don’t even have the tactile ability to ever learn Braille. Most will only be able to use Braille for simple labeling, not for reading books, like I do.

On the other hand, I never learnd to cook. Not in those four months in the center or the eighteen months in an independence training home that followed. It wasn’t for lack of teaching, but I couldn’t manage these tasks. Or even simpler tasks such as putting peanut butter on bread.

Today, I talked to my CPN from the mental health agency. We were talking about my skills or lack thereof. She seems to blame my parents for not having taught me properly. I understand. Then again, with my having had a meltdown each time my parents tried to make me learn new practical skills, it’s only understandable that they gave up. My CPN acknowledged this is a common autistic trait. My parents would say I’m not autistic, just stubborn. Apparently I decided from as early as age seven on that I would never learn practical skills because I couldn’t do them visually. Or maybe because I thought I was too smart for them. I don’t know what my father’s theory boiled down to exactly.

And now I see these blind or partially sighted people who are planning on working or going to college. I don’t know how I feel towards them. On the one hand, I feel envy. I wish I could cook tuna macaroni or zucchini soup. I wish I could ride the bus on my own, then go into town to buy raisin rolls. I wish six months of training could teach me the skills to live independently and go to college or work.

Then on the other hand, I feel an enormous sense of relief. I feel relieved that somehow my support coordinator was able to convince a long-term care funding lawyer that it’s at least partly due to blindness that I can’t.

PoCoLo

The Summer After High School

It is still incredibly hot here. That is, it should be a lot cooler than it was yesterday. I’m not feeling it though. Probably my room, which is at the front of the house, keeps the heat.

I want to write, but I don’t know what about. For this reason, I looked up writing prompts for the month of June on Google. A prompt I liked is to share about the summer after you graduated high school.

This was in 2005. Man, can you believe it’s already been fourteen years? I remember finding these odd lists of things that mean you live in 2005, such as “You have lost touch with old friends simply because they don’t have an E-mail address”. E-mail is way outdated now. However, I think WordPress already existed, though I didn’t have an account. But I digress.

I graduated from high school on June 24, 2005. Two weeks prior, I had finished the assessment week at the country’s residential rehabilitation center for the blind and had been advised to attend their basic training program. It was expected that I couldn’t start until October.

However, in early August, I received a phone call telling me I could start on August 22. So that’s where I spent the last few weeks of the summer holiday and the rest of the year.

The summer of 2005 was also the summer I had a ton of health worries. Most of them were just health anxiety, but one of these scares did get me sent to a neurologist for suspected shunt malfunction. That was when I first learned about the possible impact of my hydrocephalus on my life. I never had a shunt malfunction *knock on wood*.

The summer of 2005, essentially, was the time I left my parental home and entered the care system. Even though I was supposed to get independence training, my father predicted I would never leave the care system. He was right, but so what?

Today, I had a meeting with the blindness agency which the rehabilitation center is part of to see if I can live with them. I won’t, because their living facilities are all over an hour’s drive from my husband. This meeting did remind me of how I entered the care system fourteen years ago with the aim of doing training for a year (at the center and an independence training home) and then leaving for Nijmegen to live completely independently. It didn’t work out. The disparity between this overly-normal, independent self, the one who is married now and doesn’t need help, and the multiply-disabled self, is still hard to deal with.

Independence Training: My Journey Through Rehabilitation Programs #AtoZChallenge

Welcome to day nine in the #AtoZChallenge. I wasn’t sure what to write about till literally minutes ago. My support coordinator was in touch with the long-term care funding agency today. I still can’t disclose details, but it brought back memories of all the rehabilitation and training programs I’ve been in. Let me share.

I didn’t get a lot in the way of independence training while at the school for the blind, but I got some. It wasn’t efffective though. I don’t know why, but part of the reason was probably my parents constantly arguing with the school on what was important for me to learn. Another reason was my struggle with generalizing skills I’d learned at school into other settings. Once I went to mainstream secondary school, I didn’t get any independence training at all. I was pretty bad at life skills by the time I graduated high school.

I decided not to go straight to university after high school. Instead, I chose to go into the country’s only residential rehabilitation center for the blind’s basic program. I learned some skills, but still had trouble making use of them in the real world.

The same happened when I went into an independence training home. At first, I thought highly of myself and wanted to do things independently I really couldn’t. My plan was to get training for eight months and then leave for university. Those eight months became eighteen and then I was basically made to go to university.

I tried a ton of independence training while hospitalized on the psych unit too. It didn’t work. Whenever I tried to do something independently, such as clean or travel using my white cane, I struggled greatly. I didn’t fully realize this, not even at the long-term care assessment last January, but I really overestimated myself. My husband can attest to that. He’s had to get me out of trouble many times.

Why I struggle so much, no-one has been fully able to figure out. It’s probably a combination of my multiple disabilities (blindness and cerebral palsy) and my emotionally low functioning level.

It’s been recommended that I get more independence training. Maybe, after I complete dialectical behavior therapy for my emotion regulation issues, I’ll not feel as frustrated with myself and be more able to learn. I don’t think this is going to solve the problem though, since doing something with someone present, isn’t the same as doing something on your own.

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

Recovery

Today’s Sunday writing prompt over at Mindlovemisery’s Menagerie is “recovery”. This is such a commonly used word in mental health. “Recovery” is the ultimate goal for any mental health consumer or so it is assumed.

I attended a recovery course while in the mental institution in 2010-2011. It was very interesting. It was made clear that recovery is not the same as cure. You can be recovered and still live with a mental illness. Rather, recovery refers to getting as positive and fulfilling a life as possible. It is commonly used in conjunction with “rehabilitation”. The difference is though that rehabilitation is a treatment approach and is hence centered on the professional relationship, whereas recovery is completely patient-centered.

The recovery course I took was specifically for those residing on one of the long-term wards in the psychiatric hospital. This at first surprised me, since being hospitalized is clearly not having a fulfilling life. Or is it? I mean, if you can’t live independently, can you still consider yourself recovered.

I was at the time not planning on ever living independently. In fact, though I was engaged to my now husband, I was planning on going into a workhome, a long-term living environments for autistic people.

Here, it is important what I wrote above, that recovery is completely patient-centered. This means that, though it is believed that most people would want to live as independently as possible, if you don’t, that’s okay too. You are encouraged to make your own decisions, no matter how ill you are.

I have always been of the opinion that self-determination and self-reliance are not the same and shouldn’t necessarily be connected. I am pretty determined, but I’m not very self-reliant. I think personally that self-determination should be more important. Clearly, my last psychologist at the institution disagreed. She diagnosed me with dependent personality disorder, which according to the DSM is characterized by passiveness and an inability to stand up for oneself. I didn’t meet those criteria, but she felt I was asking for care she felt I didn’t need. She kicked me out of the institution almost with no after care. I survived, but I don’t feel well. Now it’s time to focus on self-determination. To try to reach the goals I set for myself.

Like I said, recovery is completely patient-centered. This is what I strive for. To me, recovery is feeling as well as possible. This means I can still work on recovery while going into long-term care.