Astrid’s Journal

Why do I hate to be classified as a “success story” by parents of children who in one way or another are like me? It happens all the time in the preemie and behaviourally troubled communities that I’m involved with, and to a lesser extent in other support places. I know I could’ve come out worse, and these statements are meant to be compliments. And yet I feel deeply hurt when hearing this statement.

I think that in a way it relates to my ever-changing concept about myself in these areas. How behaviourally troubled am I, really, I wonder. At times, one’d think I’m just a little self-willed, while at other times, one’d say I’m seriously disordered. And what effect did prematurity truly have on me? At times, it’s only blindness - about which my concepts are also constantly changing -, and at times, behaviour/social things add to it and I’m concerned with the emotional impact of the issue on my family. At times, I’m thinking about myself as having beaten the odds, while at other times I see myself as one of those miracles who came out less fortunate than the newspapers would like to know about preemies.

Another thing is how I know people have hopes for me that have been shattered lately, or are likely to be shattered. My going to college just fine is one of them. I still haven’t made any arrangements (besides trying to apply, but the IBG website was down all the time), and actually I’m not feeling like it one bit. I have no idea about it at all, and I’m feeling very weak.

But there is more to it than college. There are the communication/social difficulties that I’ve gotten seriously troubled about lately. I so desperately try to be sociable and communicative, to reach out, but I cannot and at times feel I shouldn’t. They contribute quite a bit to the practical problems, and I’m feeling really bad about it. There are the behaviour issues, eg. the frustration tolerance stuff. People say I’m abusive or terrorize others. When I posted about it on the behaviour trouble forum I mentioned, people apparently thought I meant that the folks at the forum said these things about their children. *My parents* say these things, and they hurt so deeply cause I wish I knew how to get over these issues. I don’t intentionally abuse or terorize people. At times, I think my parents are exaggerating, but I do not allow myself to think that way, cause it reminds me of my attitude in late 1997, blaming my mother for all that went wrong in my situation. Either way, I’m not intentionally acting this way, and I so desperately want to get better.

I know what I’m doing on these support places. I’m advocating for children to get support in a way that I feel I lacked. Not that my folks intentionally left me to my own resources. In fact, they did many things for me. They did everything to get me to go to normal school and to prevent institutionalization at the school for the blind. But at times I feel my difficulties were/are being greatly overlooked. It’s my resposibility, now, of course. I am legally an adult, so I should be able to make my own decisions. At times, I think I should be able to change my situation. But at other times I wish that I hadn’t been so reluctant to acknowledge my issues back in 1996 and 1997, cause then I was still a child and may have been able to learn to be “normal”.

I feel resentful, at times, although I’m not blaming my parents for my current situation. One never knows in what situation I’d been if something else had happened. And, of course, who says that I’m troubled at all?

I am increasingly feeling bad, for I seem not to have met the hopes/expectations set for me. I am greatly struggling, still have difficulties that I always hoped would be away when I was a grown-up. I’m not quite a grown-up, of course, but age eighteen is a culturally sensitive age, for one reaches legal adult status. There’s quite a difference between legal statuses and one’s true state, but I think that’s universal for all young adults/older adolescents. Still, I don’t think my state of skills or lack thereof is supposedly normal. I see many people my age, including lots of blind people, being more sociable, comunicative, and independent than I am. Is the social thing a blindness topic, I wonder? I know many blind people who have experienced difficulties with it, though to a lesser degree than I have. Both at the summer programme and at the course a few weeks ago, I noticed that communication was said to be a major difficulty associated with blindness. Then, it’s about things like non-verbal communication. I’ve never considered that a major issue, probably cause I don’t notice its importance. I simply don’t know how folks form groups or get to chat to each other, which appeared to be started with a non-verbal signal, like making eye contact. But for me, there’s always been this “kept from” thing, and a lack of knowledge of how to express certain things appropriately, that I’ve not noticed in other blind people, and that I cannot associate with an implication of blindness.

Behaviour issues are not blindness problems at all, or you should believe Mum’s theory, which I don’t do. And the independence issues may be related to blindness, but are not inherent consequences of it. I don’t know if it is a lack of ability or motivation or a difference on the part of others that caused me to be so behind, or a combination of these things (which is likely). At times, I feel left to my own resources in the areas of behaviour, social/communicative issues and independence things. And I’ve felt this way for a long time, long before I reached the age of eighteen. I’ve known I had behaviour/social issues for seven years, and I’ve always wished someone understood my perspective on the situation. Yet how should I have made clear this? And would it have helped? I was never the one to express these feelings - whenever someone seemed to recognize the issue, it was their idea, not mine. I think I cannot blame folks for this, since they always thought I was unwilling to change. I know that there are probably few people with behaviour issues on the forums, cause they don’t realize, or can’t express, the concern. The first time I ever remember showing I wanted to change, was at a summer camp in 2000, and there are still times when I don’t seem to acknowledge my issues. These are often when it seems that I’m intentionally hurting people, which isn’t the case. But I’m very sincere in wanting to be “normal”.

Ain’t I “normal”, I wonder, again? Too often, I get the “you’re just a little self-willed” thing. Or strangers will say that all adolescents clash with their parents at times. It is meant as a compliment, of course, but it overlooks the sincerity of my concern. I haven’t become this way in adolescence, and I ain’t just a little self-willed. I am so desperately looking for people to understand my point of view, and that’s one reason why I hate to be called a “success story”. It simply ignores my current difficulties. I haven’t overcome the odds yet, and I wish I had.

Astrid

Man, I don’t feel like doing a test tomorrow one bit! The test week’s going to start, and I’ve hardly studied at all. Dutch literature will be the first test - story analysis. We have lots of stuff we’d have had to study, but I think I know most of it. Also my English oral test, but I’m not worried. Then on Wednesday French literature and on Thursday German oral test and that’s it. Pretty relaxed, with Dutch being the only exception - they shouldn’t have put that on Monday! But I’m not feeling like we’re going to have tests at all, probably cause they’re going to be so few and I’ve been very busy over the last week and spring break.

I’ve been feeling kind of weird lately. It’s quite hard to describe. I’ve also been very tired over the last week, probably cause if I got five hours of sleep a night, you’d call it a miracle. So I did a lot of catching up in sleep over the weekend - getting up late, not going to sleep early.

I finished the writing of my project on British Idealism, but haven’t yet put it online - will have to do some lay-outing. It’s become worse than I expected it to become when I started the project, but over time I’d already lowered my expectations, so it’s turned out better than I expected it’d be.

Astrid

I returned from the course for folks who are going to college next year. It was cool to meet folks and exchange experiences, also with current college students who are blind or visually impaired. However, I did not learn many new things, beside a few resources that I’ll have to check out. Of course, the going out nights was very cool!

It has not quite helped me in my situation with the next year stuff, but I hadn’t expected it either. There is still not one single part of me that wants to arrange stuff for college cause it’s cool; the only part that wants to do college preparation, wants to do so cause she has to hold on,
and she doesn’t want to do the arrangements like inform the director of studies, dean etc. I don’t know why it is that I don’t have such a part, while at times reasoning that this is what I should do. However, I never imagine being as explaining and advocating for myself as the folks urge us
to be, but more like saying hi to the folks and informing them that I’m blind but going to study there anyway and that it’ll be no problem. Rationality tells me that it’d be the best thing to do if I am to go to college, but I do not imagine myself doing it. That’s quite scary, of course, for
it’d create quite a few problems if I were to go to college and just plainly inform the dean and director of studies that I were coming, and would not ask for any adaptations. Man, I wish I had a part to fulfill this role! Maybe, if I were pushed a little I were to finally apply at the IBG. I
wonder if it’d get me to arrange things “properly” (ie. how folks want me to do it). It depends a bit on whether the abilities I attribute to certain parts are real or only imagined, and to what extent I can “abuse” these parts to do stuff they don’t want. Let me clarify: I have a helper part,
you know, Clarissa, who is the most assertive of all the “ladies”. In my mind, she is very assertive, arranging stuff quite as it “should” be. (I’m using quotation marks for there is still disagreement within my mind over what I should do in terms of self-advocacy etc.) However, indeed, when I
use her perspective instead of “my own” (whatever that may be), I am a lot more capable of advocating for myself, addressing issues etc. then I normally am (probably cause then I ignore the other parts of me, but I won’t go into a long psychological blah-blah of that now), I’m still
absolutely not as capable of this as I should be to arrange all these things. Plus, I cannot keep up pretending to be Clarissa all the time; after all, I’m Astrid and I have a structure within my mind that includes a number of “ladies”, separated cause they represent contradictions on various
levels. Now it is such, that Clarissa herself would not want to have me go to college this year, but since she is part of me and that her skills should be mine, I should be able to use her skills if I needed to. But then again comes the question of holding on. My difficulties won’t end when
college starts, and as I said, I cannot pretend to have only one perspective (Clarissa’s) endlessly, cause either I will get crazy or she will (if that’s not the same).

The issue is not merely about synthesizing perspectives, even though that’s difficult enough already. It’s also about learning the skills to act upon the synthesized perspective. I united the qualities with the perspectives this year, which wasn’t that way in ninth grade, but it isn’t totally
working - partly it is, but the perspective won’t mean that I have the skills to act upon it. As I said, when I take Clarissa’s perspective, I’m a lot more self-advocating than normally, but not quite as much as I should be. Plus, I cannot discard a “lady” at will, for they’re all parts of me. And I need all at some point. Hmmm, this is getting really weird.

Anyway, the information we got was pretty interesting. As I already expected, we got a few “kick-in-the-ass” sessions, where they urged us to hurry up and take stepts to arrange stuff. We’re going to get the info for a few laws and regulations that can help us and such things via the mail
shortly. We also had an opportunity to exchange experiences with visually impaired students, and we got info from the BS&BS, a student association of the blind, part of the national organisation of blind people of which I’m a member. Unfortunately, some of the bad scenarios folks painted are
quite likely to be applicable to me, but who knows, maybe it goes better. Of course the overall message was that folks aren’t going to do things for you anymore at university, but I’ve known that for ages and it scaresme.

The attitude on the part of the staff was, paradoxically, quite protective. That has its positive and its negative points - positive was that you didn’t get thrown in at the deep end immediately in this strange city. Once you go to university, you also have introductory weeks etc., so it isn’t
going to happen like that there. However, it is quite negative that folks are so laconic about our current statuses, and yet suppose that we’re not going to be that way in seven months. When I was at the summer programme, folks were more realistic about my current state, without being dramatic.
Of course, folks cannot do much for us, but it’s the way they approach the topic that makes it.

Quite interesting was some list of statements relating to attitudes about blindness and blind people, which we had to state how much we agreed with it, and discuss it. Of course, there’s a great differentiation between what I know other folks would think to be the “right answer”, and how I
feel about certain things. I sensed, during the dicussion, that I was able to state my thoughts quite clearly, for so far as they don’t go beyond “reason” (quote signs again for the obvious reason). I mean, you know what certain people would want to hear, and for them, that’s obvious reason. I
wonder what an NFB person would think of these statements, for I’ve heard them make statements very similar to the ones on the list (that all were supposedly partial or total nonsense) as parts of their positive philosophy of blindness. Some, for instance, are at least a bit exaggerated, such
as: “A waitress would think it to be annoying to read a menu to a blind person.” But others either make lots of sense or no sense at all, depending on your perspective, eg.: “A sighted person can never understand what it is like to be visually impaired.”

Speaking of a philosophy of blindness, I notice I still have a problem with the advocating for your rights and needs vs. promoting a position of dependence issue. There is probably a lot between being totally dependent on others for everyday activities, and doing everything on your own (or
independently, cause we should make a disticntion between aloneness and independence), even if it costs you lots more time and an alternative is present. Still, you need to find the mean, and skills level influences it. For example, is it inappropriate for a person who doesn’t possess skills to
ask for help, simply cause that perpetuates dependence? He should learn those skills, but there is not one single definition of what a blind or visually impaired person should do independently, what he should do with adaptations, and what he should ask help with, is there? I still haven’t figured
this out.

Astrid

“Man is condemned to be free; because once thrown into the world, he is responsible for everything he does.” - Jean-Paul Sartre

From the time I learnt what existentialism meant, I’ve hated it and yet been fond of it. But isn’t that what existentialism is for? For no-one would want to be thrown into this world, condemned to make of his life what he wants. All folks like to discard their responsibilities to others: their friends, their parents, the state, God. None of these beings are in existence solely to hand human beings’ responsibilities to. They’re not only there to make choices for people. They’re, indeed, at times in existence to hold expectations for people - such as laws in the state or a religion’s doctrine.

Still, you may say that one can choose not to follow the law, his creed, or the expectations set for him by family and friends. We had a discussion on that in French class a while back, and one student said that it’s expected of those who graduate from a high level high school like mine that they go to university, and that therefore we have little choice but to do that. Of course, it’s flawed logic, but of course one’s circumstances influence the choices one makes. Like, a poor person in Africa is not likely to become a millionaire. In that respect, we cannot totally shape our lives. And, on the more personal level, when you’re a child you will not make all your decisions - yur parents will - and these will most likely influence you. Cause, even though I for example like my current high school, it was my parents’ choice, not mine, that I would go to this high level school. As an adult, you will have to make decisions, given the circumstances you’re in. “You have to live with your choices and the choices made for you,” my father once said. And that is true: we may be able to make choices to an extent, but we do live with others, and we do live in certain circumstances. For instance, I might want to become a brain surgeon, but I’d never become one cause I’m blind.

British Idealists settled the issue, on determining that a person’s circumstances and character on the one hand and his will (chosen desire) on the other hand are united and cannot exist independently of each other. That’s understandable, for a person’s possibilities in willing and choosing are limited by a person’s circumstances. For instance, if I desired to have both a book and a CD, but I didn’t have the money to afford both, I’d have to decide which to buy. By deciding either, I made that my will. Yet on the other hand, what one chooses and wills also influences what one will become. Like, when I go to university in September to study English, that’ll influence what I’ll become - although with a degree in English or American studies you can still work in quite a few professions, you’re unlikely to become a physics teacher, for then you’d have to have studied physics. I like the British Idealist idea about freedom, will etc. much better than the existentialist idea, cause it includes how our circumstances and character influence our choices to a point that goes beyond: “We’re just thrown into this world and condemned to be free.”

Astrid

Lately, I’ve started to participate on a forum for parents of children with behaviour difficulties. Reading the things the parents write shocks me, cause I realize I was, and sometimes still am, like these children. And the parents use words like “abusive”, “unlovable”, etc. to describe their children. And my parents and Sigrid have done the same! Each time I get those remakrs, I’ve become frustrated, cause I’ve realized I have problems in this area since 1998, yet I do not know how to change it. That’s also what I meant when I wrote about the being angry too easily: I’m not willingly making people’s lives miserable with my anger tantrums. But of course, that is not exactly about understanding situations - of course, at some times I will get upset/curt/etc. cause I don’t know how to act appropriately, but my getting angry easily is not a thing of not knowing how to act but a thing to do with my quickly getting frustrated. Still, however inappropriately low my frustration tolerance may be, it is not something I choose. Sigrid thinks that when I’m making toast and getting frustrated cause I burn my hands and can’t get it done, that I’m only screaming to get her attention, but she doesn’t know that I’ll get equally frustrated when I’m alone.

I know that there are children and adults who display antisocial behaviour simply cause they lack respect for others, or who are defiant just to willingly annoy others. Many of the parents on the forum have such children, but many also have children whose behaviour trouble runs deeper, such as emotional disorders. I realize that outsiders will only see a child’s or adult’s behaviour, what preceeds, and what follows. They cannot look into a child’s mind, and a child cannot always express her feelings or the reasons behind her behaviour. And if she can, who knows if she’s sincere or just being manipulative?

I’ve struggled with this a lot of times. For you know how folks have said I lack self-criticism, I’ve often wondered when this applies: is it merely blaming others for one’s own failures, which I may’ve done a lot of times when I was younger, and now still at times do when the true cause of the failure was a problem of mine that runs much deeper than behaviour (eg. not having stood up for myself)? Or is it also the explaining what got me to behave in some way in a particular situation, all of which’d be nonsense according to behaviorist viewpoints?

And if the issue is simply that you are out-of-control, as a person who gets easily frustated often is, then does that mean that you can change your behaviour at will? Does one choose to be out-of-control? Would be weird, as the phrase “out-of-control” suggests that a person cannot control his actions. Or does one choose to get frustrated, if that’s a better wording? Can one, who gets frustrated easily, even if that had no deeper cause, change this behaviour at will?

I have a great problem with terms like “abusive”, “manipulative”, etc., cause they imply that a person chooses to act the way he does. While at times I do not know how to act appropriately, or I get frustrated and can’t handle it. I’m rarely truly manipulative, or can’t one say that of oneself? Is it manipulation to say one isn’t often manipulative? Cause, after all, behaviour sometimes has a positive consequence, like folks helping me etc. Does that mean that I’m acting out to get attention? In my view, not: I get curt or angry or frustrated cause I cannot handle something, and I do not know how to appropriately communicate that. The result may be that I get the assistance I’d wanted to ask for, but when folks just ignore my behaviour, it won’t get me to communicate more effectively, will it?

Another thing is about realizing you have a problem. I realized I had problems with behaviour in 1998, but I still have my problems. Does that mean I don’t want to change? Does it mean I want to be manipualative (boy, do I hate that word!)? Does it mean I don’t show enough effort? Would I just need to be held accountable for my behaviour and then it’d suddenly disappear? Ain’t I held accountable? I wish punishment for inappropriate behaviour woud give a child or adult the skills he needs to behave appropriately.

Astrid