“Where Will You Be In Three Years?” Revisited

One day in September of 2006, I was seeing a psychologist at my former training home’s agency. I have never really understood what his job was supposed to be, but he ended up recommending I be referred to mental health. Anyway, in the midst of a very long, exhaustive conversation, he for some reason asked me where I thought I would be in three years. I said that I had no idea, but proceeded to fill in some details anyway. Later, on September 22, 2006, exactly three years ago today, I wrote about this painting of a future image for myself on this blog. I didn’t really say that I had no idea what I might be like in the future, but really that I had many ideas that were all blurring together, some incompatible with others. Mostly, I made a clear distinction between the capable college student image and the incapable, disabled person image. My definition of “total incapability” was like this:

Yet there is also this part of mine, that totally incapable girl. She thinks she requires a lot of assistance cause of behavioural/social/communicative difficulties – not just disruptive behaviour. She sees evidence, in the fact that I was at first unable to buy a railroad ticket a few weeks ago (cause the situation confused me), that she can’t do these things for herself (I can buy railroad tickets perfectly well) and, in the fact that Renee left cause she didn’t know what to do, evidence for the idea that she’s truly too difficult to handle and belongs in the mental health system. This is not saying I need 24-hour care or something, but what it says is that I have fundamental impairments in social/behaviourral/communicative functioning that aren’t going to go away once I’m learning to adjust to some emotional difficulties, and that do require to be addressed after I leave training home.

In a sense, I am glad I no longer hold this standard, cause it’d require me to have less than zero self-esteem. In fact, by this definition, the verdict of “total incapability” was already out by February 21, 2007, when the mental health Apeldoorn doctor referred me for treatment.

Do I no longer struggle with these images, now that the black one has more than come true? Well, I still do, but in a sense, it’s on a different level. I was, after all, very, very naive at the time even to hold the possibility that my behavioral, social and communicative issues would go away without any treatment. This just isn’t going to happen: as an Aspie, some situations will always be problematic for me, and I must learn coping strategies for handling them. My meltdowns are also quite likely to continue to be a weakness for me, and I must learn alternative behaviors instead (and just for the record: I never said I didn’t want this!). I’m pretty sure I was already aware of this to some extent back then, since why else would I so consciously want to disassociate myself from this “autistic” image?

Of course some beliefs I held back then are incorrect in general, but may possibly be correct in my case. For example, I assumed that needing assistance in structuring one’s daily life or in interactions with others, would be intrinsically incompatible with competitive employment or regular education. There recently opened a supported housing accommodation in my city just for autistic college students, and their explicit goal was to help more autistics graduate, so that they could actually get real jobs and get off benefits. In general, it is a huge prejudice to assume that this is impossible. After all, what does assistance with structuring one’s daily life have to do with college-level intellect? Maybe some of these people will end up in dreaded academia, but why is this the nonsensical field I wrote it off as in 2006? We need professors, too. In fact, sometimes I wish I knew how to acquire the skills to go back to university.

That is my current most optimistic self-image: just going back to Radboud. Not really to get into academia someday, since I can’t look that far to the future and if you want to get into top graduate programs, you have to plan for it way in advance. Actually just to enroll in an undergraduate program – my boyfriend is making me jealous, since he started in philosophy this year -, and see that I get my Bachelor’s degree. I am not sure whether there are any independent living requirements for this – the supported housing place I mentioned above, would not be suitable for me, since it is in many ways a training home.

My current black image, the worst self-image that I can think of, involves me in an isolation room of course, and from there on, another long stay on a locked ward. I’ve been there already, and I know that I was way better behaviorally when reso rejected me from there last year, than I was in 2006. Of course, the staff are telling me that, should I ever need to be sent for a time-out at the locked ward, it will only be for a short while, but I don’t believe this.

Unlike maybe in 2006 – I am not sure, since I don’t remember it that well -, I also have in-between images. There is this image of me ending up in some community-based supported living accommodation and doing volunteer work, taking informal classes at a community center, studying at Open University, and/or attending some activity center to pass the time. There is also an image where I end up staying in some (semi-)institutionalized placement but function quite well and don’t need threats or time-out systems anymore.

Of course, I know that life can get yet even worse than being on a locked ward. Prison, a state mental hospital for criminals, and a homeless shelter are all worse. I hope I won’t end up coming back to you in 2012 to tell you that this is exactly where I ended up. Then again, I guess I need to be lucky that these places won’t have Internet access.

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So That Was 2008

Well, that was 2008, the year I was convinced I would not see coming to an end. With the most certainty one can have about what will happen in the course of a few hours, I will in fact be making it to 2009. In a sense, it scares me. This is for several reasons. One is the fact that I’d pretty much pulled myself through the year by holding on to the idea that, no matter how hard life would be, it’d be over before the end of the year. Of course, the idea that I’d die before the end of 2008, also scared me, because I was supposed to focus on the future so much. This was particularly in the spring, when there seemed to be soem perspective on the future, but I knew it to be relatively distant in time – too distant for me to oversee.

However, in a sense, I pushed away my suicidal thoughts, that had been with me since late 2007, in early 2008 by thinking I’d die before the end of the year anyway. Some depressed people use an imminent death as a reason to become suicidal, but I used it as a reason not to be suicidal. This caused my life to improve in some ways, in that I gained privileges, was enabled to go home and connect to the Internet again. In fact, objectively, my life from around the summer on should’ve been quite enjoyable: I have a boyfriend whom I see at least twice a week, I have plenty of time for my hobbies and interests, and I can do my Open University psychology courses (which is really just one of my hobbies, I’m not likely to enroll in the degree program anytime soon) in a relatively manageable pace. And indeed, for a while, I learned to find enjoyment in my life activities. After all, if I truly were going to die before the end of the year, why was I wasting my precious time worrying about it? How would I like to spend my life if I had only this limited tiem? Well, it’s pretty much how I ended up spending my life – except of course the future planning that I have to do. I, however, tried to pretend that there is some future when doing planning with the social worker, and just have as much enjoyment as I could the rest of the time, but I still failed mostly – in both ways.

In October, I suddenly realized that maybe my life wasn’t going to end in 2008, and I alternated between impulsive plans about my future and feeling depressed and slightly suicidal (as in wishing that I would get into a car accident or something and reading about death online, but never really planninf to actively kill myself) for the next two months. From early November on, it was mostly the latter, because it was made clear to me many times that my plans were not going to be followed through on: going home was not an option because student housing would kick me out, Werkenrode doesn’t want to plan for me living with them in any way at all until I’ve changed enough, and I have not and am pessimistic that I ever will, and I was turned down by the mental health living assistance agency. This meant that I was back at the point where I was in December of 2007, only it was one year later, and this was not a positive thing.

Of course, you would say, there were some enjoyable aspects about my life in 2008. As I said, I started dating my first boyfriend this year. While this is a good thing indeed, I find it particularly hard to see that. Similarly, in 2007, I had more social contacts than I had before, for example with people in the student housign complex. However, I was still overwhelemd, depressed and eventually suicidal. It is kind of strange: when I look at how I’d want to live my life, I wouldn’t change much, but I still feel overloaded.

Overload. Is that the thing I’ve been writing about ever since 2004, and each year writing my review and resolving to change that in the coming year? I’m not sure, since I didn’t discover the word till 2007, but I think it is. Maybe the correct term is different – after all, in 2001 and 2002, I referred to it as “compensation”, ie. compensating for my blindness -, or maybe there is no correct term at all, but I think it’s pretty much the same. Maybe it is due to a problem in executive functioning, as the psychologist at the Deventer training center for autistics hypothetized. Maybe it is due to something else. Can I change it? I’m not sure, but I’m currently quite pessimistic. I always ended my yearly reviews with the hope that I’d improve my life (in this respect) in the next year, but I can’t say that now. It’s all just too unclear for that. And that is probably the hardest thing about living past 2008: each year, I was certain that in the next year, I’d be taking steps to improve my life and thereby lessen the feeling that the world overwhelms me, and I knew at least partly which steps to take to achieve that goal. I always had some belief that within the next year, there’d be some important change that would improve my situation in this regard. Not anymore: while 2009 is going to bring at least one important change – in that I will leave my current ward -, I’m pessimistic that it will change my mental status for the better. And, after all these years of resolving to change and not achieving the goal, I feel that this time it’s just, well, not really going to get any better – and I’ve lost the hope that any turn of the year, to 2009 or else, will do something about this stuff.

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Yearly Review of 2007

When I wrote my report on 2006, it mostly concerned what I expected to change in 2007 – because I ended the year on a crossroad in my life in many respects, and with many uncertainties about the next year. Particularly, 2006 ended just after I had had my admission interview at mental health Apeldoorn. In the yearly review, I wrote:

There is that other side, of course, that emotional or behavioural part of my situation. I used different terms for that in 2005, but mostly just called them “some of my difficulties” and wondered about their significance. I said that would likely be an important issue in 2006, and it did, and indeed, mostly just like it’s ever been since 1998. I hope that in 2007 it can be an important issue in some other ways than it’s always been ever since 1998, but I’m pretty skeptical as it requires communication that I lack.

Now, of course, I know that my mental health and behavioral difficulties did become a significant issue in 2007, and not at all like they’d always been ever since 1998. Communication played a significant role, although that was by far not always appropriate communication.

On January 3, I had Renee ask my family doctor for a referral to mental health Apeldoorn. She let me go to the appointment on my own on January 16, and I managed to answer the doctor’s not too open-ended questions. Same with the February 2 discussion with her and the psychiatrist. After this appointment, the admission team discussed me amongst themselves and decided they wanted to interview my parents. To my surprise, even after we’d had a major argument, they came to the appointment and answered the doctor’s questions seriously. This got me diagnosed as autistic on March 16 and started in treatment on April 25 – or April 19, if you count in the one discussion I had with another psychiatric nurse who hadn’t cared to read my file..

There was no immediate improvement, and a few months ago Arda even told me that I deteriorated after having been diagnosed. I doubt my diagnosis had anything to do with it, other than in some respects. Like, I admitted to needing more structure, but this is not deterioration in my opinion, just getting what works. She meant that I freaked out more, but I attribute this mostly to the stress of the upcoming move to Nijmegen. I believe that, had I been able to continue my discussions with Jeanine, I would likely actually have improved, even though it’d needed to mean not just my learning to control my behavior – which is important, of course -, but others learning how to react. There’s an E-mail from Gerda in which she reacts to criticism from me by stating that she “just sets limits”. She meant to say that she didn’t mean to treat me unfairly, but some behavior just isn’t appropriate and she’s going to hold me accountable for that. I agree, but sometimes also realize that it isn’t just about limit-setting. I’m slowly learning to use alternative means of communicating, but many do require someone else to accept the alternative means. For example, recently, a nurse here gave me a card that has “Do you have time for a talk?” on it, for me to use when I want to speak with a nurse but cannot ask for it. This requires all nurses to accept that I use this card. Now it is fairly likely that they would, but very often in my discussions with Jeanine, there first was a lot of talking about my side of the behavior, and then Arda jumped in to say that it still wasn’t acceptable, and there was no time left to find ways in which I could navigate Arda’s limits while taking into account my own difficulties.

I had my last discussion with Jeanine on July 4, but after this, had a major relapse, so Jeanine arranged for me to see a psychiatrist on July 25, who prescribed me the Risperdal. Taking that medication was hell from day three on, first because of possible side effects that weren’t being taken seriously, and then on top of it because of its lack of effectiveness. Because I had no psychiatrist in Nijmegen yet, my family doctor prescribed my Risperdal after the August 1 move, and she thought I ought to control myself behaviorally. Well, duh! If I’d been in a state of mind to do so, I hadn’t taken this medication in the first place! Eventually, I tapered my Risperdal starting September 27 and was completely off it on October 8.

The move itself was very poorly arranged. I learned from that that I should’ve jumped in right from the start on February 14, when I was told that I was done training and needed to move out by June 1. The correct order of events should’ve been that you first determine what sort of living situation and help a client needs, and then make arrangements to seek one, not the other way around. I should’ve jumped in and asked directed questions the day Arda told me that I had to move. Instead, Arda wrote “my” letter to student housing in early March, E-mailed the student counselor my preference of living place, while I hadn’t chekced it out, and had Marjan find service providers in Nijmegen. At the same time, she kept telling me that I actually needed to be in housing with support available within walking distance, but such places don’t exist in Nijmegen. I don’t know if such places exist outside of supported living facilities – we never actually sought any -, but I also know that, if anything, I was to stay out of supported living. There’s this idea in training home staff’s minds, that your living arrangement defines your level of independence, with supported living being the least independent form of living and living on your own with itinerant support being the most independent living form. This is, of course, only dependent on how well you can handle unexpected events, which may be one skill of independence, but is not the only one.

Then, once housing had been arranged, a service provider had to be found. That was another battle. First, Philadelphia refused me because they had no experience with autistics living in their own apartments, and next, the agency for psychiatric patients, called RIBW, suggested we go to Werkenrode instead because they had more experience with blind autistics – as if I couldn’t instruct an RIBW support worker on how to handle my blindness. Werkenrode agreed to provide support, and we arranged for me to get to know my new support worker. Getting funding was another thing, but we ended up with sixteen hours of independent living support a week – which was said to be quite a lot, in fact, pretty much the most one can get who lives in their own apartment.

After the move, my former support worker quit after only a little over two weeks, and two new ones came around, plus Gerda. I have very little memory of how things went while I lived in my house in Nijmegen. I remember that there was a support worker almost every day, that mobility went horribly, that I had phone calls with Gerda every night, E-mailed her a daily evaluation, and felt that I couldn’t hold on. My support workers really tried the best they could. I don’t want to suggest, with one of my previous comments, that all they did was setting limits. They tried to help. They – well, especially Gerda -, wanted to keep me at home. In fact, in my treatment plan, someone has written that Gerda said that living alone seemed best for me until now. I cannot remember Gerda actually having said that during the discussion, but she may’ve thought so. In any case, she did all she could to prevent me from being committed to the psychiatric hospital. I am not sure at what point she called the psychiatric emergency service in Nijmegen to ask them to please take me seriously if I made it to there. I never made it to Nijmegen, because I was picked up by the police on Apeldoorn station after having threatened to run in front of a train, and subsequently committed to the hospital in Apeldoorn. I was transferred by ambulance the next Monday.

Meanwhile, there’d not been much mental health contact apart from the psychiatric emergency service being called several times and the psychologist in whose admission procedure I was stuck repeatedly informing them that he wouldn’t recommend I be committed. After I’d become suicidal and had been committed anyway, he proceeded with his diagnostic procedures. Here, everyone pretty much decided that my old autism diagnosis was incorrect, and there was little wrong with me psychiatrically apart from having an adjustment problem (as it’s called) after having lost my old structure and started at university. University, by the way, was once again fine academically, but otherwise hell, despite my taking a half courseload. In any case, I felt my diagnosis taken into question and everything that went with it, was gone. Even though I got re-diagnosed after having “lost” my diagnosis for only a month, I still have difficulty putting together all the pieces of the way my mind works that I used to remember and threw out the window the day my diagnosis was being questioned.

Am I making progress now that I’m here? Not really. I play cards a lot here, and last night, I made up a card game analogy to how it’s going with me. There’s a game we often play – I don’t know its English name -, in which each player first gets a number of cards (seven if you play with one pack), and the goal is to get rid of all your cards, but if the other player lays out a certain card, you gain a certain number of cards. For me, it seems that I keep laying out one or two cards at a time, then the other player lays out a card and I have to take five cards – or nine or twelve or fifteen, depending on whether I had a card to lay on theirs and which one they laid on mine. In the end, I have a half pack of cards and cannot oversee it at all, and give up because I’ve lost track of which cards I can lay out in what order. In the card game, I’m getting better in keeping track of my cards. In life, I seem to have gotten worse – or I’ve gotten more on my plate. This lack of view of the big picture is, by the way, a characteristic of both of my disabilities.

I spoke of communication in the 2006 post. That is still not what it should be. In fact, I never communicated well enough that I needed help, then ended up in a situation where appropriate communication wasn’t needed anymore. Of course, my suicidal threat was communication, but it isn’t how one is supposed to communicate – but at the point where you’ve become suicidal, it doesn’t take a lot of communication to make clear that you need help. I didn’t want it to get to this point. In fact, when I said that I hoped my difficulties would be significant in some other ways than they’d been ever since 1998, I probably didn’t mean a psychiatric hospitalization. It strikes me that, a year ago, I imagined staying out of mental health because I wouldn’t be able to ask the family doctor for a referral, and now I’m on the closed ward. I didn’t want it this way. I wanted 2007 to have gone radically differently. Now it’s over and all I want is for 2008 to be a better year, in which I can take steps to improve my life.

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Vacation and Disability: My Challenges

It’s the season to go on vacation. I won’t go this year, of course – I’m too busy doing stuff for Nijmegen -, but I rarely go. Vacations are supposed to be relaxing, but for me, they’re extremely stressful. I remember one particular vacation, which is the worst-ever vacation I’ve had. I’m speaking about a summer camp in Russia I went to in August, 2000.

This camp had about all the problems a vacation can have for me, except that I didn’t need to plan it myself. The planning thing is the main reason why I haven’t gone on vacation ever since my parents stopped planning vacations for me.

The first problem is with an unfamiliar area. I am not the best cane traveler in the world – and at the time of this particular camp, rarely used a cane -, so I can’t travel unfamiliar places independently without it draining my energy resources. In some places, it’s even draining to walk sighted guide, like in Rome in 2004. On the camp in 2000, I walked sighted guide almost all the time, and was shuffled aroudn between camp leaders and fellow participants, with the camp leaders more often than I’d like remarking that I should learn routes and the fellow participants getting increasingly weary of me. This is, however, likely also due to my behavior, which I’ll get to later. I didn’t like being dependent in the first place, and liked it even less when I felt others were feeling bad about guiding me. However, using my cane for mobility drained my energy even more – and still does. This is a reason why I don’t like going to unfamiliar places. Other blind people may have better travel skills, but I don’t.

Another problem was that the vacation was very unstructured. I tend to do better on vacations that are centred around a certain theme – particularly, one I like -, such as ICC. The Russian camp, however, was more of the standard summer camp type of setting. There were a few scheduled activities, but you got to have a lot of free time and many activities were also optional. For example, there were workshops about every day. I chose guitar lessons, but quit after coming only twice, cause I didn’t like guitar and the workshop itself was pretty unstructured, too. So, aside from mandatory activities, I spent most of my time in my room recording journal entries on tape.

Then there was the issue of social conventions. While I didn’t even grasp social interaction between my fellow Dutch campers, I had much less understanding of social conventions that are different from what I knew to be Dutch social rules. For example, one day when we were in Moscow, I was instructed to speak the few words of Russian I knew because we were encountering police. Years later, I learnt that Russian police are corrupt and they would’ve picked us out (and not let us go our way till we paid them) if they’d known we were foreigners, but I curtly defied the instruction at the time. I also didn’t know that it was expected of me to start eating at mealtime as soon as the food was on my plate – and couldn’t watch anybody do so. As far as I could tell, it was polite to wait till everyone on my table had their food, but my camp leader got frustrated with me cause I wouldn’t start eating till she told me to.

To the other people who went to this camp, the most notable about me were, obviosuly, my behavior problems. This camp, in fact, was the first time anyone ever questioned me about them, and I crafted one of my paradigms about their origin. While I do think the fact that I didn’t like to be dependent, contributed, I also think I suffered from quite significant overload and unclarity at the time – but I didn’t understand any of these concepts then. You see, I often throw a tantrum when I feel my planning has been disrupted, and this happened quite frequently – and, well, basically, a vacation is a disruption of your planning on a large scale. Also, I noticed from later vacations, that it’d often overwhelm me to need to do several things at once: walk an unfamiliar route, take note of the things there were to be enjoyed, and socialize. When I was in Rome in 2004, I freaked out quite majorly and later found myself explaining to a teacher that I felt traveling and sight seeing were already enough of a workload, so I couldn’t chat at the same time.

Another thing was that some of my fellow participants had gotten so sick of me cause of a few tantrums I’d thrown, that they started openly making fun of me. This, obviously, only led to more frustrated and curt reactions and tantrums, which kept the circle round. While this is always a problem, it adds up to the draining from the other difficulties in vacations – while, as I said, vacations are meant to be relaxing.

Even though I didn’t go into details about my disabilities here, anybody who knows about them, can tell that quite a bit of what I describe above, could be explained by my blindness and/or my autism. However, I do not want to imply that everything that can go wrong on vacation, has to do with one’s disabilities. I was, for example, also the youngest Dutch participant (the camp had participatns from Russia as well as the Netherlands). I have little experience with camps or vacatiosn specifically organized for the disabled – this one was meant for the visually impaired as well as sighted, though I was the only blind participant in the Dutch group -, and wouldn’t know if those are better. Maybe I’ll find out sometime.

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(Progress?) Report on 2006

Of course, I’ll have to do a report on the year once again. I’ve doubted for a long time, and still doubt, whether to call it a “progress report”, like last year’s was or just a review, like the one from 2004. The distinction lies mostly in whether I considered the year successful or not. The problem is, it depends on how you define “success” whether 2006 was a successful year.

Practically, I think, 2006 was not successful. Upon starting the year, I was convinced I’d go to university by September and live on my own as I left training home to go to Nijmegen. Not only am I not there yet, but I’m also not sure I’ll be there by 2007, either. Of course, whether I go to Nijmegen to study linguistics I think (at least, it’s the only alternative I’ve still left over) or to some college to study journalism, is only a matter of which I like most and has nothing to do with educational levels, but there’s still a lot of uncertainty in my mind as to whether I can keep up at college at all, and about my living situation, I’m pretty much still a tabula rasa. So if progress is judged by where I thought I’d be by this time, I’ve regressed, not progressed at all.

This is measuring progress relatively, of course. Absolutely I did make progress, in that I’m in college part-time now, can travel to school on my own and do my shopping and housekeeping mostly independently. It’s not enough, the NFB would say. Measuring progress in absolute terms is about the worst mistake IEP team members of disabled students can make – it should be relative, cause the ultimate goal is normalcy. A while ago, I read a newspaper article about autistic children in an ABA programme in California, whose “therapy” was discontinued if they didn’t make enough progress, while the parents said they did make progress and the “therapy” should therefore be continued. Of course, I oppose most ABA programmes, but I agree with the parents who say that normalcy (or, as they call it, “indistiguishability from their peers”) should not be the (only possible) goal of a programme. So I may’ve progressed in 2006 even if I didn’t reach the ultimate goal.

That’s for the practical skills: I learnt to do my cleaning and shopping and can combine this with part-time college and can travel to school on my own, but I ain’t yet in college full-time, still can’t cook independently and still can’t do my administration on my own. There is that other side, of course, that emotional or behavioural part of my situation. I used different terms for that in 2005, but mostly just called them “some of my difficulties” and wondered about their significance. I said that would likely be an important issue in 2006, and it did, and indeed, mostly just like it’s ever been since 1998. I hope that in 2007 it can be an important issue in some other ways than it’s always been ever since 1998, but I’m pretty skeptical as it requires communication that I lack. I’ve been looking all over the place for specific information about my situation which I could put into an automatic translation programme (after all, when I have to write something that I don’t understand, grammar is always bad anyway), print out and take with me on Wednesday, but all I could find was catch-all terminology.

Have I progressed on the emotional/behavioural level, too? Well, in one sense, not at all. My behaviour hasn’t even improved absolutely – it’s deteriorated. That’s the one clear thing about a relevant topic I managed to tell the folk from mental health on December 12: that, while I’d always had behavioural problems, I did feel I’d gotten worse quite a bit over 2006. I can tell this from the paradigms others hold, too: even as late as last August, Arda was telling me that really there was nothing wrong with me and she could tell if I were crazy cause crazy people act crazy even when they think they’re normal, and now you know where we are now – or where we’re planning to be if for God’s sake I can communicate.

Emotionally, as in how I feel about myself, the situation is a little more complex. I started out very confident but also very much dissociated from the parts of me that weren’t all that confident. I remember those early weeks at training home: I seemed to know exactly where I was and where I wanted to be, but I know (and probably knew at the time) that it was all based on expectations. As soon as I started noticing I wasn’t meeting them, I got frustrated and eventually freaked out.

Expectations didn’t decrease after March 21. Of course, the pressure from having to be at university by September, had gone, but I now think that, had I followed the same path I was on in March, 2006, I woudln’t have been able to go to college by September even if I was holding on.

Wait. I have to differentiate here between expectations of practical skills, like cleaning or mobility, and expectations in other areas, like scheduling, being able to find a recipe, social skills, etc. In the former, I was holding on quite nicely and the pattern of learning didn’t change after March 21. No-one was expecting me to cook independently before then – I first cooked with Ellen on March 15 -, so we couldn’t tell whether I would be able to. And as for cleaning, what is there still to learn but to keep my structure? I can clean independently and I could by March 21, mostly. With mobility, one might think my skills have decreased, but factually, they haven’t: all that’s changed is that we don’t tend to schedule practising a route when I don’t need to use that route, while we used to do that with other routes, so it’s taking longer but not more practice.

The other skills did not decrease, either. In July, Arda was angry cause I supposedly “suddenly” couldn’t find a recipe anymore. I informed her, factually, that previously no-one had expected me to find a recipe completely independently but I would sit there with a staff member and they’d ask what I wanted to cook and I’d say something like “rice” and they’d help me find a recipe with rice, or I’d tell them that I’d already cooked rice last week and we would be having macaroni the next day, so what else could I cook, and they’d suggest something like bami. Then Arda got to speak of progress. Yes, that’s what it was: I wasn’t making progress, but my skills weren’t decreasing, either. By the way, we got this problem solved pretty much by October as I had enough recipes to choose from, and now I just pick one from the list in my computer. The same goes for scheduling: when I started doing my own scheduling, first in July adn later in October, there didn’t occur major changes. I could just copy/paste my old schedule and do some experimenting if I wanted to (in October, inspired by my new theories about “realism”), but I didn’t need to change big parts of my schedule. So what’s the problem when I go up to Renee asking her to help me schedule when major changes are about to occur? Is that “suddenly” not being able to schedule anymore? No. I can schedule nicely for the week starting January 8, because that’s a perfectly normal week again. You may expect the progress that I can eventually account for major changes in my schedule, but I don’t know how to.

My behaviour did deteriorate in 2006 – I cannot say this was just not progressing, cause it was really absolutely worse than it’d been before. I said this to the mental health folk on December 12 and said I didn’t know why that was, and Renee theorized that expectations in social/practical behaviour – not my biggest strength, obviously – had increased. I think this is true in a way, but I find it hard to differentiate this from just not progressing, while it is really something else. It’s hard to distinguish these two, cause what would’ve happened if the same behaviour were expected of me let’s say two years ago? I probably would’ve been exactly where I am now, but that doesn’t mean it’s just about increased expectations, cause I do freak out much more than I did before. So I think it depends on how you measure progress: if progress is responding in a more acceptable way to a certain situation, I’ve not progressed, but not deteriorated either; but if progress is measured by how often and how severely I freak out, I’ve deteriorated quite a bit.

Now is 2006 like 2004, cause I’ve seemingly only gotten worse relative to the expectations set for me? In one way, no, in that I feel less dissociated from myself. This is some statement I have to be careful with, cause it connotes deliberately acting out, which I don’t do. I don’t quite exactly mean behaviour, indeed. What I mean is that I can be more honest about the actual problems I experience. Like, I’ve been cooking with Ellen for nine months before admitting why I couldn’t do it completely independently. That may seem like losing a skill, but it’s rather coming closer to where I really am. I wanted “realism”, in early 2006, but the first thing required for that, is to be honest about my actual situation. I try to be that, now, though I still cannot completely accept the idea that being honest about your problems allows for more openness to solutions than pretending the problems aren’t there.

In another sense, 2006 did end like 2004, in its being so open-ended: on January 1, 2005 I had no idea what the second half of the year would be like. It’s pretty much the same now, in that I have ideas of what I want adn what I can and what I should, but at this moment I cannot seem to form a picture out of them. That is in a way more troubling than the situation of 2005 – all I had to do, at the time, was decide to delay college to go to rehab -, but in a way, it’s more comforting, in that I do at least know that I want to be in college, but that I don’t want it to go like it went this year or in high school and therefore, I feel I’m apparently incapable cause I cannot think of “colour pictures” that work. Will I find one in 2007? I’m not sure, but I hope so, cause I don’t want to give up altogether.

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Different Approaches to “Realism”

Yesterday as I found myself thinking about college/university programmes, living arrangements (not written about that but I thought about it) and the actual situation with my social/behavioural problems, ie. “realism”, I realized that “realism” can be looked upon in several ways:

1. Collecting every little detail about my situation, from my high school GPA calculated to three decimals to exactly how many minutes it’ll take me to clean the bathroom;
2. Believing that, with time and experience, the right picture of my situation will form itself;
3. Actively experimenting, for example by experimental scheduling, in order to create the most workable picture of my situation;
4. Exploring different pictures to see which fit(s), and/or letting others do that for me (ie. label me).

All of these have their good points and their bad points and have, to different extents, been used by me in the process of getting my situation clarified in the past nearly nine years.

In the early days of trying to clarify my situation, I focused on my behavioural problems, cause at the time (1998), these were what blocked my transfer to regular educaiton. At this moment, I wonder how bad they really were, cause I cannot remember having been physically aggressive to people or objects nearly as often as I’ve been recently (to objects) in the past four to seven years and my difficulty communicating didn’t become really serious till sometime in late 2005 or even 2006, but that may’ve been cause people didn’t demand as much self-sufficiency in my communication as they do now and/or the people in my environment were more eager to react to inappropriate/unclear ways of communicating. Probably, still, the behaviour was quite bad, cause I used to identify with a mildly intellectually impaired and autistic adolescent who was in the news in 1997 or 1998 cause she was tied to her bed in an institution cause no-one knew how to handle her behaviour. In fact, I think I have to admit to wanting my behaviour to have been less severe then than it is now, cause a clear increase in behavioural problems still allows for a decrease. That’s a form of second-type approach logic, which is in different ways the opposite of the first type and the fourth type: it’s opposite to the first type in that it’s looking at the whole picture instead of the details, and it’s opposite to the fourth type in that it uses an individual situation that should be unfolding itself instead of labels that should be stuck on me or that I should find. In any case, in my approach to the questions of 1998, I used the fourth type of “realism”, as the identification with the girl in the news illustrates. I didn’t know about labels at the time yet, so I just used the terminology from the 1998 report and made up my own fictional interventions that I thought might work if only there were people willing to recognize I had an actual problem.

I kept my half-scientific labels (interpretations from the 1998 report with the knowledge and understanding of a 12-year-old) till sometime in 1999 just after starting regular high school. What approach I started using then, I don’t remember, but it was less label-focused and more situation-focused. Like, in 2000 when I was in Russia acting curtly (not aggressively, I might say), I explained the behaviour from the point of view from the actual situations in which it was happening. At the same time, I started looking historically at my behaviour and came up with the famous 1993 thingy, but that never got to be a real theory till sometime in the second half of 2001. Mostly, the way I looked at my behaviour was similar to the way I’ve been looking at it recently: what factors in the current situation contribute to my acting this way? I classify this as a “type two” approach cause it is very open-ended: this is my situation in the here and now and that may or may not remain the same for a certain period of time. The advantage of this way of looking, that is the main reason why I’ve used it primarily in 2006, is the open-endedness: it assumes that change can always happen if I set my mind to it or if I learn certain coping mechanisms. It is an attractive approach, cause it claims that I can essentially become whoever I want to be or think I should be or think I can at least be, or whatever. That may sound like a drawback cause I don’t know who I want to be, but actually, it isn’t, cause I am far more in control of my situation if I say I behave badly cause I am confused about my situation, than when it’s the other way around.

In one sense, the approach I silently used in 2006 – and that I used between 1999 and 2001 -, is not looking for “realism” at all, but hoping for some magic change to occur. Look at the college programmes in yesterday’s list: even though there is no consistency amongst them and the most important confusion revolves not around *which* programme I want to enroll into, but around whether I can actually hold on in college at all, they all have a more or less relevant social component, which is exactly my weakness. There is no point in being confused about not knowing into which of these seven (well, two) programmes I want to enroll in, even though this is exactly what has triggered several recent tantrums. There is far more logic in wondeirng whether I could actually hold on in college and whether my two selected programmes aren’t still too socially demanding for me and whether I feel there is any use in studying anyway and in what living arrangement I belong. These questions cannot be solved in a type two approach, cause this approach includes neither decision-making (which is essential, cause neither labels nor details have any intrinsic value as for their implications) nor definite conclusions (which are necessary for predicting my future), but it *is* really appealing to use this approach for an indecisive person like me who also has a lot of inner contradictions in herself, cause it means a kind of “anything goes” approach – which is simply not true.

By 2001, I started using a more historically-focused approach to my situation, with the well-known 1993 and adjustment to blindness etc. paradigm at the centre. It was more definite than the former paradigm, but was still grounded in the belief that anything that has been learnt, can be unlearnt. This is, of course, not in line with the psychodynamic perspective the theory presumed, but at the time I hadn’t heard of that yet and was using “here and now” problems related to blindness and all that as the focus, where I presumed the general approach to be learnt years earlier but never forgot that the behaviour took place in 2001/2002. I was more clear in terms of broad theories for explaining my behaviour than I’d been before, but still used a pretty open-ended approach to how my situation would evolve, in that I believed that I could change my behaviour radically by learning better coping mechanisms, and I in fact believed that learning better coping mechanisms was a relatively simple thing if I had the support/resources for it. In early November, 2002, as I wrote my article What I Realised, I genuinely believed that realizing some of my recent thinking errors could get me to pretty radically change my situation. This is the exact approach I was using in October, 2006, too, even though the 2002 type of looking at “realism” can be said to be the second, while in October, 2006 it was obviously the third. I think these approaches lie on a continuum.

In June, 2002, of course, another paradigm emerged, which was the idea that I had an Autistic Spectrum Disorder. This led to a revival of the same approaches I’d been using in 1998/1999, but now with a lot more knowledge of official terminology and the perspective of an intelligent 16-year-old, in other words, a lot more defined and refined ways of looking at myself through ASD-coloured glasses.

At the same time, the way I was looking at myself scared me, cause, as I said then, “I already have a story”. The actual thing is that an ASD, or any other mental health problem (by the summer of 2003, I was obsessed with about half the DSM-IV, but ASDs remained my main concern), creates a definition of my situation that is incorrectable. I resisted the idea that I might be autistic on the basis that an ASD is a pervasive part of one’s personality and you can’t “unlearn” an ASD (unlike what the behaviourists think). Still, as 2002 and 2003 went by, I got more and more accompanied to the idea that really, behaviural problems, social awkwardness and communicative difficulties were an essential part of who I was and how I had to approach my situation. I never really got to approach my situation in any way, cause the ASD thingy was only one picture I’d selected to be “me”, while others had selected completely different pictures and weren’t going to allow this form of “realism” to dominate. Besides, I wasn’t busy thinking about my future or anything yet – all I wanted was an explanation of why I was getting stuck everywhere in the here and now.

Of course, this paradigm ceased to exist on April 11, 2004 after already having been dormant for several months, cause by then I realized that I’d gone too far in my obsession with ASDs. Still, I realized that my difficulties were real even if they didn’t need labels. I still used the fourth type of approach to “realism”, cause I still believed my profile was defined even though it didn’t have a DSM-IV label anymore.

I kept using the labelist focus – or the “selecting a picture” way of looking at my situation – till sometime in late 2004. Then I learnt about rehab and decided this might be a good way to improve my situation. Of course, I was mostly talking about my practical skills deficits, but in 2002-2004 I’d pretty much presumed my daily living skills problems being due to a disorder (other than blindness, like ASD), too. Also, by then, I adopted a more blindness-focused paradigm about my behavioural problems, so it fit quite neatly in the general way of viewing my situation.

I started future planning in late 2003, but never really took it seriously. I had gone to the info evening in 2002, of course (that same thing that was last Tuesday), but I’d only been to psychology and pedagogical studies info rounds (cause the ones I actually wanted to go to weren’t being held) and was wise enough to conclude that I wasn’t the type of person for them, even though I found them interesting of course. So planning actually started with my visit to Radboud in 2003, and I immediately picked English/American studies as my major and never let go of it till March, 2006. That was – and is – not the main problem: the problem was that I couldn’t cope in a college environment and I couldn’t live on my own. The first was cause, in high school, I didn’t need to be as communicative / assertive as I would have to be in college (cause, even though initially my parents always expected me to solve my own problems, they almost always ended up solving them for me), and the second was cause of my lack of daily living skills. So I went for rehab and completed the programme but, till about my fourteenth week, never let go of my determination to be an American studies major in Nijmegen and live on my own there by September, 2006. This was my parents’ perception of me and it was my teachers’ perception and it was what the NFB expected blind people with no other disabilities to be, so there.

Of course, the question whether I had these additional disabilities, remained, but more silently than it’d been before. I used the hydro thingy in 2005 to dig into possible neurological complications of my prematurity, but stopped this in January, 2006 as I got to know a fellow client here whose hydro led to brain damage and to whom I didn’t want to compare myself. It wasn’t a major factor in my looking at myself, cause that is not what rehab or training home were/are meant for.

My first use of the word “realism”, of course, relates to my vision impairment and was of the first type of approach: by now, I feel ashamed about all the detailed questions I asked Kira last year, that really hold no relevance. Vision and the lack thereof is the clearest example of why details say nothing about their implications: it was the fact that I, apparently noticeably, used my vision that sometimes made it necessary to explain, not the details about my visual acuity or field of vision.

“Realism” got a broader meaning in the spring of 2006, when it was in my list of reasons why I didn’t want to go to university by September yet. I thought that “realism” could be achieved eventually, but I kept using the second type of approach for half a year and never got a step closer to actually clarifying my situation. This is in part due to my black-and-white way of thinking – whatever I found was either too easy/low-level or too difficult/high-level or both, so I defied any attemtp at clarifying my situation routinely -, but it is also related to the fact that my situation is the integration of my behaviour, my abilities and difficulties, etc., and these have been quite unstable over the months, and can look different depending on how I approach them, so I think that if I keep using this approach, I’ll never get a step forward.

In October, I started experimental scheduling, which is the third type of approaching “realism”. This is based on the idea that, no matter the technicalities (labels and/or details) of my situation, what I make of it all depends on decision-making through experience. It is different from the second approach, in that experimetnal scheduling requires actively manipulating the situation, while achieving “realism” solely through experience is a passive process. I fell back onto the second type after several weeks, but realized that this was as much my decision as my decision to schedule experimentally had been – or, at least, I couldn’t blame anyone else for it. This has, for me, triggered a “type four” tendency, in that, if my current situation is “realism”, I want to know why. I’ve always wanted explanations and I in one way hate that, but it makes some sense, in that everyone I know says that a blind person whose only disability is blindness shouldn’t achieve as little as I do. I’m not sure if my current situation is the final one – I still hope it isn’t – and some form of explanation (like “You’re blind, so …”) cannot solve this, but that’s why I said that each of these four approaches have their good parts and their bad parts.

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One Year in the Disability Service System Today

Today, I’ve been abusing the disability service system for exactly one year – or so it feels. In other words, it’s exactly one year ago that I started at rehab. This whole year seems to have had an “am I getting better or am I getting worse” connotation, and everyone probably has different opinions on that.

I already had this feeling in my first or second week at rehab, when I was trying to come to grips with the idea that I supposedly was “further” than all the other students cause I was congenitally blind, yet at the same time, I had Menno (the former student at my high school) tell me about table manners when my mother expected me to help him with Braille learning – which I’d have eagerly done if he’d asked me.

I remember the model of adjustment to disability I learnt about in September. It helped me in two ways: firstly, it was written with congenitally disabled people in mind, and secondly, it made clear that putting non-disabled values into perspective did not necessarily mean abandoning them. In other words, just because I had to ask where bus three would stop at the dynamic bus station, didn’t mean I couldn’t use public transportation. It may sound silly, but, as you know, it became one of my major accomplishments at rehab.

The other, of course, was equally controversial: the “realism” about my visual impairment. This didn’t become fully-rounded till sometime in February when I’d started to acknowledge the practical implications of my blindness – something you can’t truly learn in CPH training with theoretical cases. I’ve meanwhile returned to my old approach to my blindness (the one from before my vision loss of 2004), but I don’t pretend there are no further adjustments to be made when my vision changes again or something like that.

Realism got a much broader meaning by March, 2006, when it became the main point in my fourteen-item list detailing my current situation: I didn’t know what was realistic and I didn’t know whether I’d know by September. I wonder if, within ten days, some magic will be done. If not, I still don’t know. In fact, I’m worse now than where I thought I’d be by now last March.

I’ve always wondered, since realism became something more than to be able to transfer buses at Apeldoorn station or to know the medical details of my visual impairment: what is realistic for me, and is this truly “putting non-disabled values into perspective”, or am I abandoning them, or is it not about disability at all? I didn’t like people’s remarks, mostly in my early weeks here in training, about how I supposedly don’t accept blindness. I accept the technical details of my visual impairment as they are – ie. the fact that I have light perception only and am, hence, functionally blind. The contexts, however, in which people have used my accepting or not accepting blindness or any other characteristic of mine (but it’s easiest to say blindness cause that’s what most people agree to has to be “accepted” or “adjusted to”), is always related to some paradigm they hold about what that characteristic implies, and my unwillingness to conform to that paradigm. Well, I am extremely reluctant to conform to *any* specific paradigm about what any or all of my characteristics do or do not imply, and sure, I have a negative self-concept, but I don’t think there’s a reason why I should conform to what the people here, or my parents, or my sister, or whoever say in order to change it, and if so, to which.

I think there are people out there who assume my rather negative state at this moment is due to my having been involved with the disability service system too much. My first inclination is to disagree: I firstly, was not in a positive situation in 2005, either, and secondly, why would it specifically be the situation here that is wrong, and not any other? I remember those remarks made by my parents about my having been “indoctrinated” into making decisions they disagree with, and I’m honest: very few decisions I made, are 100% mine, but wouldn’t they be my parents’, if I made the decisions they want me to make? I’m confused about this again, and I can’t keep from connecting all of this: I’ve been in the disability service system for a year, if I don’t majorly screw up or CIZ (agency that determines who gets services) is going to nag, it might become two years, I’ve practically learnt a lot but not enough according to everyone’s standards, but people would most likely only see the fact that I’ve altered my plans and am not yet in Nijmegen. Maybe I’m indeed just wasting state money by hanging around here. I don’t know.

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Progress Report on 2005

I’ve done a lot of reading of journal entries from late 2004 and early 2005. Sometimes, it makes me feel strange that this anger, fear and resentment happened only one year ago. That by January 1, I had no idea what the second half of the year would be like, but it’d most likely not be nice. I can’t even remember what I thought about when I envisioned September, 2005. It’s so weird that I now do know what the second half of the year was like, and that I made it through it without “just holding on”. What’s even more surprising, given the writings from late 2004 and early 2005, is that I don’t just see these few months as a “delay”. You see, at one point I’d been scared that January 1, 2006 would be the same as January 1, 2005 except that it was one year later. After all, the demands placed on me for 2006 are pretty similar to those I would have had to meet in 2005, had I not decided to delay college a year. And indeed, I still haven’t applied at IBG and it makes me somewhat worried to realize that, but it’s more for fear that I might forget to altogether than because I don’t want to: I didn’t do it in December cause my IBG papers were lost and I plan to do it by the middle of January cause then I won’t have the hassle of changing addresses just after sending in my application.

When I remember in what circumstances I entred 2005, I feel I’ve made quite a bit of progress. Practically, you might say it doesn’t show itself, in that I still don’t do the housekeeping and that my arrangements for college are only a bit farther than they’d been in 2004, in that I did call the student counsellor. However, emotionally and also in my skills, the situation is quite a bit different. In December, 2004, I had to write a piece about what scared me about college and what to do about it. All my paragraphs ended in “But I’ll just have to arrange that.” Not only would I be able to elaborate some more on “just arranging” now – in that I am working on that list of needed accommodations and I know whom to contact to get an appointment to discuss my needs -, but “just arranging” feels a lot less overwhelming than it did last year. That’s an improvement on the emotional level, in that I feel better about mentioning my disability. Cause that is what it actually was that I feared: needing to tell a university folk that I’m blind. It still feels kind of scary, but it’s something I’m not ashamed of, or whatever it was, to say. Now I’m still working on figuring out the details, but the fact that I felt myself ready to go into that – contrary to in August, upon starting rehab -, signifies that I figured out that it’s not a question of whether to mention my blindness at all, but how to mention it.

Sometimes, you might wonder whether it’s actually significant that I’ve improved in this way. Whether I felt okay enough about my blindness to mention it at university or not, if someone had pushed me, in early 2005, to call a student counsellor and say what I’d said last September, I would’ve done so. The issue wasn’t so simple, of course. Cause once I’d told that folk that I’m blind, I also would have had to mention needed accommodations and I most likely would have had to remind professors about keeping them. This is something I’m still working on feeling better about, but the realization, in early September, that putting non-disabled standards into perspective is not the same as abandoning them, made quite a significant difference. I’ll sometimes still get “locked up inside” when having to ask for help or accommodations, and I definitely plan to improve this in 2006, but there are some situations I wouldn’t have thought about being able to handle half a year ago and that I do handle now, like the all-too-familiar example of the bus transfer.

Another verr improtant area I consider myself having progressed in, is to realize that it wouldn’t help me to be resentful, but that I, indeed, as I wrote on January 1, would have to take charge. It took me months to finally make my own decision, and maybe there are still people who consider that a sign of weakness rather than progress – or maybe there are parts inside of me -, not to go to college by September, but to want to learn new skills at rehab first. I felt rather bad about that decision in some way, in that I thought I wouldn’t have needed it, but looking back, I think it’s been quite useful. Of course, the feelings repeated themselves by December, when I had to make the decision of whether or not to go to “De Boomgaard”, but at least it was me who made the decision, which you can’t say quite fully about rehab: everything leading up to the eval week in June was another person’s decision and it was only my decision, in April, that whatever the people would advise me, I’d not go to college.

Still, there are things I’ll have to work on in 2006. There are practical arrangements to be made – getting college worked out -, and there are issues of 2004 and 2005 that did not resolve themselves completely. I still wonder about the significance or insignificance of some of my difficulties, and this is likely going to be an important issue in 2006, just as it’s been ever since 1998. Many of my other difficulties, like the “rub along” thing, have been worked on significantly in 2005, but are still not settled. These are very deep issues that I don’t get resolved in eighteen weeks of rehab and a few more weeks of critical thinking. It’s a continuous process that I don’t think I will decide to leave behind me soon. And even if I were to decide on it, that wouldn’t mean that on an emotional level, it’d be over. Some people may feel that as a sign of failure, but not all of the resentment with my parents and confused feelings about myself were settled by simply “taking charge” and seeing that I could be successful practically. Taking charge was the first step, or maybe even realizing that I had to work on these things was, but after deciding that I had to do something about it, that still isn’t totally fifnished. But I hadn’t expected to solve every single thing upon the end of the year: some stuff, you just don’t settle easily, and most certainly not when you first have to wonder whether you’re allowed to consider them.

I feel a lot better about the turn of the year than I did last year. It still sometimes scares me, but I’d told you already that I’m scared of large numbers and the inevitability that 2005 will be over, is somewhat frightening. However, that’s not cause of any particular reason – it’s just there. I still have a lot to do in 2006 in many respects, but at least I know I’ll allow myself to do so. Fear of being overreactive kept me from allowing myself to work out some stuff in 2005. It isn’t going to in 2006.

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What a Difference Two Years Make

It’s exactly two years after the “A vision of success” discussion at the BlindKid list. This discussion marked the beginning of my journey that eventually got me to rehab. The discussion was about an article about a high school freshman who was still receiving many services, like an aide, braille instruction, etc. People were shocked at the fact that a 15-year-old kid still needed all this help. I didn’t understand and asked for an explanation, admitting that I was behind in independence skills. Then, we got to speak about ways I could improve my skills and people mentioned NFB centres. I said I lived in the Netherlands, but we also had a rehab centre here, by chance in my town. This centre is not the same as an NFB centre and at this moment that is causing me to feel somewhat strange – fearing people will criticize me for not being at a centre that’s exactly like theirs -, but I’m still learning lots of new skills here. I’m still feeling uncomfortable about needing training, but I’m happy that I took the step to prepare myself for college. The people in the NFB have been very supportive of me, even though I’m still feeling strange about their philosophy, or the way I perceive it to be, and I’m happy for all the encouragement I’ve gotten from them. In my first week, I was uncertain if I was actually going to learn good skills at this centre, particularly cause stuff like occupational therapy had not yet been scheduled, but now I think I’m learning new things. I’m also glad for all the blind people I’ve met at the centre. I am being looked up to by some, especially those rcently blinded in accidents or the like, but I can look up to some others and see what they’ve accomplished, including some of the staff who are blind. It feels like it’s no longer just theoretical, and that’s a very positive realization.

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Early Memories of Disability and Becoming Aware of My Blindness

Last year I wrote about early memories of disability. This was actually a posting to an E-mail list. I was very egocentric in my message, and others were not: I remember people mentioning their hanging around with other kids with disabilities and the ideas they got from this exposure and hence how it influenced their concept of their own disabilities. I cannot remember meeting other kids with disabilities at all until I went to the school for the partially sighted when I was nearly six, and even from that time, I cannot remember how I reacted to these other visually impaired kids. In the original message, I wrote that my first memory of realizing I had a vision problem occurred in Kindergarten, with the walking through the mall stuff. Some discussions from before that time were not about my blindness, but about health conditions I had, like when I had my tonsils taken out in May, 1991 and was also severely ill at around the time of the surgery. I do remember that hospital stay, but my blindness was absolutely no factor in it. I think, basically, at the time I was much more occupied by my other conditions. I for example around that time had some problem with one foot, for which I had to wear a cast for a while. I remember that and all the tests and procedures it involved. I didn’t get to meet kids with disabilities there though, at least, not as far as I can remember.

When I wrote about adaptations because of my disability, also on that same list, I wrote that the first adaptations I got were not cause of blindness. I don’t know if this is true, but it is what I remember. In fact, I do not remember my blindness being important till I moved to the school for the visually impaired. My parents even made a visit with me to a school for the physically disabled once – I don’t know if it was actually a plan of theirs to send me there or if it was unrelated. I don’t remember what that was like much of the time, except that I see some vague images in my mind.

I don’t know how I reacted to the other kids at the school for the partially sighted. I once told someone that I was a “baby” compared to them, cause I was not even six and all the other kids were seven or eight. I indeed remember the girls “babysitting” me. No idea what significance my vision impairment – I had the most severe vision loss – held, but probably not much for kids that age. When I officially started first grade in the autumn of 1992, I remember mostly standing out cause I was bored by the class material. I used large print and I still remember my writing a whole line full of numbers two: they looked like the letter Z, but I don’t think I thought so at the time. At one point, I was allowed to do some more advanced calculus (still boring), but I had to do everything all over again once I started learning Braille.

My only memory of my blindness playing a significant role at the time, was when I was invited to a friend’s birthday party. We were about to go out to McDonald’s, and this girl lived in a flat. We went out and for some reason I lost track of where the others were going. The girl’s father called out to the girl to help me. At this moment, I wouldn’t know if it was my blindness, or my inability to walk as quickly as the other kids did (I was much smaller), that caused this event, but at that time I linked it to blindness.

I wrote matter-of-factly about the having to learn Braille and how I felt bad about it, but, to be honest, I cannot remember this occurring at all. It’s just that Mum says I hated having to learn Braille and that I remember not liking it when I was much older, like ten or eleven. I remember once when I was nine sitting on my bed and Dad telling me I had to read to him before he would read to me (Sigrid and I were read to till I was eleven or so). I don’t know how it went on, but my major struggles with having to read and not wanting to were in sixth grade. I don’t think I used Braille often when I was in the second and third grade, either, but I have no idea if that was because I didn’t want to or cause it didn’t occur to me to, since print *was* my natural reading method. Mum thinks I had very great difficulty with Braille and having to learn it, and you know about her extensive theories about its impact – or about realizing I was blind in general -, but I’ve never believed them.

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