Astrid’s Journal

Called my mother this evening. Half an hour arguing about my behaviour problems and what I should be doing about them. She started out by asking me if I was doing nicely on my own. What did she mean? I didn’t know. Said something about cooking. Then, my mother got to speak of arranging my own life. She meant living on my own and going to Nijmegen, it turned out. She got to speak about my behaviour (at least, I eventually figured out that was what she meant to be discussing). Her first paradigm was that I only did it when staff were constantly watching me and commenting on me. Hell, no. They hardly do that now. Then it got to be something about disagreeing with people in general. Well, when I have a simple disagreement, like the thing over the eating in my own apartment issue, I can usually keep it relatively quiet (not completely, I did make some curt remarks to Renee but at least didn’t majorly freak out). In any case, it was always something about me reacting angrily (sometimes too angrily) to people saying or doing “stupid” things. I should avoid those situations, according to Mum. As I said I couldnt’avoid all social interaction, she said that I could talk fine if it were about something I was interested in. That goes for many people with some form of communicative difficulty. The thing is, I can’t talk politics, philosophy or healthcare job offers 24/7. I sometimes have to discuss instructors getting readers in a digital format (the communication psychology reader was scanned, but not in a format that I could read) and getting schoolwork done and I sometimes have trouble when I don’t understand how a cafeteria line works (like last Monday). Mum excused most situations by being about the other person not understanding or whatever. And I couldn’t say that I didn’t understand. I know that it’s not the most solution-focused statement to make, but we weren’t discussing any situation that needed a solution, and in general, it is true that I don’t understand. At most times, I find it extremely hard even when I have to be solution-focused, to come up with something beyond those three words. But Mum took a stand that the whole not understanding thing was something I’d imagined. Well, maybe there’s something linguistically imaginative, in that it often happens that I don’t even understand that I don’t understand, so “I don’t understand” becomes kind of a catch-all phrase whenever I can’t get my situation any clearer.

The next paradigm was about my being anxious. I, namely, made the comment that sometimes I freak out when not understanding a situation or when something isn’t going my way. Mother added the words “being afraid” to the things going my way part by some leap of magical thinking and further interpretated that I freaked out when I was anxious. She said that she was reflecting my words - she wasn’t. Still, she kept her paradigm. Meanwhile, we’d gotten angry at each other pretty much and we hung up the phone twice. I think once was after that anxiety paradigm of Mum’s. As I thought about it, I figured that her assumption that my freaking out moments reflect panic, might be quite correct in fact. Panic, however, is not always about fearing something. I think it can be just as well about feeling overwhelmed by a situation and then only reinforcing it with your own thoughts. You see, my thoughts never reflect anxiety and neither do my feelings (and when they do, it’s often a very specific fear that is relatively easy to overcome, like the fear of asking for help), but these are the moments when I have most often a “racing mind” or what the staff call “thinking twenty steps ahead” and which they used to see as a characteristic of my high intelligence but which I’ve long known it wasn’t, cause it usually goes from step 1 to 5 to 8 to 3 to 12 to 18 to 20. “Thinking twenty steps ahead” is a characteristic of some people who experience panic. It’s not really that cause I don’t have the symptoms, but I can see where Mum is coming from. I told her so and Mum got into something about having to analyse in which situations this happens and how I can react differently. She still refused to believe that I often really cannot think out solutions when I’m in the situation. I mentioned the example from Monday in the cafeteria line. Yvonne took me into the line and told me what we were having for dinner. I said that I would like that and she told me to ask for it and left. I didn’t know, at the time, that I was in the line yet (there were no other people), let alone that there was a waiter or whatever they call those folks in cafeterias to whom I could ask for the meal. I also didn’t know where Yvonne was so couldn’t call her to ask for clarification. So I just stood there, doing nothing, without anyone asking me anything (if there was a waiter or whatever, why didn’t he speak to me?), till someone (turned out to be Yvonne) got up to me and asked whether I’d already requested my meal. Then I was even more overwhelmed cause I had no idea what she’d been expecting of me while I was in that I thought empty place. While in line at the cafeteria, I think I said at least five times that I didn’t understand. I really didn’t. Then when we were on the train home, I already knew the things like that this place was indeed where I would have to order food, that there was eventually a cafeteria folk (why didn’t he say anything?) and that Yvonne hadn’t really gone far so I could’ve asked her for help. Then I understood. My Mum commented that I was very naive, not knowing that there are always people near when you’re in a cafeteria line. Just cause she calls it naive doesn’t mean it isn’t real. Now I know for the next time that when I’m in a cafeteria and don’t know what to do, I can ask if someone is there to order my food. Now I do understand. I don’t know whether I hope it is or isn’t going to happen again.

I also, somewhere, got to mention the many different paradigms, as a reaction to Mum’s belief about freaking out when I’m dependent and the anxiety thing. I said that everyone had different ideas - Arda speaks of clarity, Renee and Arda talk of making decisions, Mum refers to dependence and Sigrid has some theory about adapting to others -, and they may all be right in some situations, but I at least can only see that I don’t understand and sometimes that things aren’t going my way and that this is frustrating me. She was, by the way, once again fine with my echoing other people’s paradigms when I had none of my own, but I told her that I would only do that if I understood them and agreed. How weird that she at once wants me to be completely independent and then still feels alright with my echoing others’ paradigms about my situation in a mental health context - which is a very serious form of emotional dependence. Sometimes, mental health professionals need to know other people’s opinions to validate (or not validate, of course) the client’s account of their problem, but that always happens with the client’s consent and it’s something vastly different from the client blindly echoing their ideas. I echo others’ ideas cause I have difficulty making clear my own situation, but I echo the ideas that I feel are valid.

By the way, we also briefly discussed the Socialist Party and why I wasn’t doing fine there, either. Mum’s first conviction was that I’d freaked out when going to hand out flyers for the election campaign. Then when I told her I hadn’t freaked out and I didn’t know when I had freaked out, she assumed these other people were just different in some way from me, like other interests or not at my intellectual level. 99.999% of people are different in one respect or another. If that impairs someone’s functioning, that’s a problem. Maybe that was what Sigrid meant with the adapting thing. Besides, it’s all speaking of informal contact in this situation, and that’s not the main reason why I’m asking for help (and not the situation in which I most often freak out, either). I eventually had Mum agree with another modified version of my idea and she told me to “think about that”. I tried for nine years, but anyway. Then she asked what the mental health folk had said. I told her that those folks don’t draw conclusions in five minutes (indeed meaning to imply that she did), that the folk from last week had said it didn’t have a quick fix (she, like Mum, told me that “there is no pill for that”, which is a pretty obvious thing), she did have some ideas but she thought it best to have the appointment tomorrow. Mum seemed to have no opinion on that.

Planned next week’s studying with help from first Ellen and later Arda. Got it done quite nicely until I freaked out at my psychology project and the orientation to Saxion’s programmes and career psychology assignments. Elma had suggested on Monday that I ask Koos to allow me to hand in psychology later (has to be January 29), but I decided against that cause the reason I haven’t yet finished it is purely about not having started it on time - particularly, having debated far too long about which topic to choose (eventually chose mild intellectual impairment). The orientation to Saxion’s programmes thing is stupid, cause I did finish all that I can finish already, but firstly I have far too little content (only three pages and it has to be 10-15, but I can really only think of nonsense to add) and secondly, we will be getting the last workshop (or really not a workshop at all, some stupid info market) on January 29 and it has to be handed in February 2. That’s a problem to everyone. Eventually, I did send Elma an E-mail asking her to help me contact the career psychology instructor to ask her to delay my having to hand in the project. The reason is that I only finished scanning the reader one or two weeks ago. In fact, I thought I’d scanned all of it two weeks ago, because the same reader is used for cognitive social psychology and we don’t have that now, but when scanning that part of the reader, I still found career psychology stuff last week. As a consequence, I didn’t fully understand the assignment till last week. And that combined with the fact that I missed the first class (in which assignments are usually explained somewhat) and the fact that instructors always say “Look in your reader” when I ask them about assignments, made it only possible to start the project last week. By the way, the reader says something different about the assignment than what I remember the instructor saying, but I’ll just stick with the reader. I did start the assignment, but it requires 150 pages of reading. While I’d started that long before starting the assignment, I have to reread most of it for use in the assignment. Partly, of course, this is a planning problem: I didn’t have either the book or the reader on time, but I could’ve started doing other projects. Could have. I’ll certainly plan much more strictly for the third quarter. Now really do hope the instructor - who is pretty strict, but okay - will allow me to hand it in a few weeks later. I, by the way, do hope I can still do communication psychology on February 5.

My sister was here yesterday. First, we went to a play by my sister’s classmates, but I have no idea what it was about and can’t remember most of it. Really didn’t understand a thing. Then, we went to my house and had some drink. Sigrid started asking me about mental health. She asked what that folk had said on Tuesday and I gave some noninformative answer about the Friday appointment. Then, she insisted I explain why I am actually in mental health. Well, you know how difficult that is anyway, and I didn’t particularly feel like it, either. That’s cause I know Sigrid doesn’t like mental health professionals and also sort of believes I really don’t have a problem. At first, I just told her to read my journal, but I’m not sure if I want her to, cause my ideas of my situation and what’s come of it differ in some fundamental ways from the idea Sigrid eventually made up for herself. She started assuming I was going to mental health cause of not being able to chit-chat and got to tell me that neither can my father. Whaha! I think my chit-chatting abilities are better than what my sister thinks they are and I don’t need help for the fact that I don’t like chit-chat. Then she went on making more assumptions about “communication” and “social skills” but essentially meaning my lack of friends. Well, of course I don’t like that state, but it’s not something that significantly troubles me (not anymore, at least). Sigrid kept being convinced that the problem was about friends for quite a long while, so I had to tell her at least three or four times that it wasn’t. Meanwhile, she said that not having friends and not being able to chit-chat run in the family, as if that were a reason not to care if I did think it was a problem. Severe mental illness runs in families, too. But the worst of it all was that Sigrid went on from this paradigm assuming I had no place where I could truly be myself (well, you’re right there, but the reason is not about being or feeling too good) and telling me why Mum believes everything will be much better once I’m at university. Her logic seems to be as follows: everyone needs at least one person who is truly, genuinely interested in them and with whom they can be completely themselves. Now of course I’m super special, being extremely intelligent and having hugely unique interests and all. She means politics and philosophy, not calendar calculation or any of my other truly odd interests (the current one is job offers in healthcare). Now cause of being so special, I need people of the same specialness to associate with. That means people “of my level”. That’s not Sigrid, even though she’s going to be at university next year, too. It’s not anyone at high school, even though most people in my level high school go to university. I wonder how everyone is suddenly going to gain those damned IQ points or whatever determines “level” by transferring from high school to university, but well. Never mind that my IQ is not extreme even though it’s high and my interests are not unique. And besides, I’m not doing okay in places where my mother assumes these spcial people are, like the Socialist Party. I guess that imaginary Dr. Jansen I wrote about a view weeks ago should do a case study on my mother, too, and her disorder should be called Narcissistic Personality Disorder by proxy.

The whole thing, according to Sigrid, had something to do with adapting to other people. According to Sigrid, I couldn’t or didn’t want to adapt to others. Well, if anything, I can’t, cause I don’t have the slightest idea what she meant. In this context, she liked the question from Tuesday whether I could imagine how other people feel. This is weird, cause earlier in the discussion, she vigorously stated that I have absolutely no problem with that cause I can for example tell that when someone cries, they’re sad. But well, I couldn’t adapt, or at least wouldn’t. Sigrid assumed I didn’t want to cause I felt I was wasting my time - or she felt that way, at least - dealing with people whom I had to adapt to. Hmm, maybe it would be easier that way, cause it meant not desiring to be around or associate with people I have to adapt to. Sometimes, in my current state, I wish I were that aloof. But I eventually got it through to Sigrid that I did want to adapt. As you can see, she still believed the whole thing was about informal communication or friends. Still, she didn’t abandon the adapting paradigm as she got convinced it wasn’t about informal communication but about behaviour and communication in a more functional sense. I told her about the January 3 agreement and we got into a discussion of what impact being kicked out would have. I informed her that I would still have time to find a place to live, cause I won’t be kicked out right away. She asked me whether I thought I could live without assistance. I made a slip, cause I honestly told her that I don’t - something I shouldn’t say to Sigrid. She said that was a reason why being kicked out would have major impact: not so much cause I really wouldn’t survive without assistance (we both agree that I won’t starve or the like), but cause, according to Sigrid, my lack of motivation after being kicked out would lower my level of functioning so significantly that I wouldn’t be able to keep up. Hmmm, who was it again telling me that I should just go to Nijmegen by September, 2006, while I believed I couldn’t? As for being told to leave: I cannot predict the future and I hope I won’t have to, but I’ve been known for holding on when I really have to. Besides, that was not what we were talking about: freaking out to the point of almost being kicked out, is a problem no matter what being kicked out is going to imply.

Then Sigrid got to ask about those “fights” with the staff. At first, she assumed it had to do with her old idea about adapting, too, in that I freaked out cause people were belittling me or something. Hell, no. Meanwhile, she tried to explain several times what she meant by adapting to others and why she thought I had a problem with that, but I didn’t (and still don’t) understand her and repeatedly told her so. I apparently screamed to her, too, but she didn’t consider that significant - she just told me I did. Her first paradigm was that I felt misunderstood. Well, yeah, sometimes, but that’s not about the other person. She should’ve known this by now, if she was thinking a little meta-communicatively, cause she didn’t consider her not understanding my explanations and my consequently getting frustrated, to be her problem (and neither did I). So she concluded that I couldn’t explain things. That became a new paradigm, but this time I at least see it happen in reality. And I didn’t understand. Well, I said so several times on Tuesday. My sister calls it “miscommunication” and therefore getting into “fights” and concluded that, if I didn’t understand the adapting thing, that was a fine thing to say, too. I did, and can I please make up my own ideas? She had a problem with Renee having been present at the admission interview, but later didn’t anymore, as I told her I agreed with what Renee had said. And now she didn’t even disagree with my using other people’s paradigms to explain my situation, if I couldn’t explain it myself. She meant her adapting thing. Well, I do sometimes use paradigms made up by others, like the clarity thing, but only those that I do understand.

Now I do wonder what she told Mum about the mental health thing, cause it seemed that she was in fact sent by Mum to interrogate me. I don’t want her to tell anything, cause that increases the likelihood of false expectations and ungrounded opinions. The thing is, I would’ve wanted her to know the thing if I knew she’d stand with me when I made the decision. Like, of course she didn’t agree with the thing when it was still supposedly Renee’s decision, but I hoped she would support me after the admisssion interview. She didn’t. She still doesn’t. She’s only “interested”. Hell, I just want her to be *really* interested, if she can’t support me, but all I get is obligatory curiosity. By the way, Sigrid eventually supported my decision to go to mental health, but that support was based on her views of why I’m there. I guess she’s going to drop her support next Friday (depending on the outcome of that discussion) or even when she gets to read the January 16 entry.

The weather is extreme today. Heavy stroms and lots of rain. In January! Four people died from being hit by falling trees and the like. Because of the weather, Marianne took me to fitness by car and Arda took me home. Last week Thursday, we also had a storm, but that one was less severe.

Spoke with Arda about my studies. At first, she focused only on my being behind and dismissed my concerns about how I’m keeping up (or not keeping up) as being cause my current programme is very practical and socially oriented. She seemed to think that if I went to university, it’d be better. I like to think so, too, but I know from high school that it doesn’t work that way. No-one can do anything about that, of course, but it does make me feel quite pessimistic.

Later, I did do some planning on finishing this quarter. Still ain’t sure I’ll keep up, but I hope I will. Finished chapter 11 and 15 from psychology today (had started both days ago, of course, cause I’m glad if I can read ten pages an hour). Tomorrow I might be scanning the final part, or at least quite a bit of it of my psych book with Arda (but I’m afraid she forgot to look at the central schedule to see if that’s at all possible). Also will have to do job field orientation, but I think I can do that on Monday morning or else on Tuesday afternoon if I still need to scan on Monday. Speaking of scanning, Elma got the repro (whatever that may be) to scan my communication psychology reader.

I also mentioned the feelings about studying at all. At first, Arda called that “thinking twenty steps ahead” and said it was ineffective thinking. It might be, but I have to keep in mind that I’m exactly one year in training home today and feeling like I’ve not achieved much. Arda disagreed, but that may still be the competent girl hiding behind me idea. In this context, I mentioned my “care plan” and what’s in it about my expected outcome. Arda said we’re still working towards that. We are, but I feel I’m not meeting up to that standard and I’m afraid that we will keep on delaying making decisions about my future until it’s like July (if I make it till then, of course) and then they’ll say something like: “Well, we’d agreed that you’d remain here till the summer of 2007, that’s now so go ahead and seek a place to live and apply at university/college or do whatever else you like.” Of course, a lot can change in half a year, but I’m not at all in favour of “we’ll see” politics like I’ve been employing over the past two years. Also, I’ve long realized that decision-making isn’t the most important factor in the college/university thing anymore, at least not as in deciding what I want to major in. It was not at the core, or even close to it, of why I delayed university for 2006: my main reasons were about practically and socially not being able to keep up. It’s still the same, and I’ve realized in this year that it’s likely still going to remain the same. So I need to take into account the more practical parts of studying, too. That doesn’t mean I’ll study something I don’t like just because it’s practical or requires little social skill. Hell, Arda suggested I go to law school cause that’s so theoretical and a relative of hers who studies law in Nijmegen has only one day of class a week while being a full-time student, ie. little interaction with others needed. I immediately told her I wouldn’t do that cause I don’t like it, and of course she agreed that I should do something that I like. So of course I have to major in something that I like and that requires decision-making on this front. Accommodations are always possible for blindness reasons (of course it’s not so much blindness that’s currently troubling me, but well). Still that doesn’t mean I can do whatever I want (or at least not in a way that I would feel happy about). Like, everyone knows I’m going to leave Saxion after this year, hopefully with a freshman certificate, and it would not at all be realistic for me to continue in one of their programmes. Arda, Elma and Dannie are fully right about that when they say my current programme expects good social/communicative skills and is very practically-oriented. By the way, this is an interesting shift in views: when having the discussion together in November, I was the one informing them that I had better major in technical informatics and they kept telling me that my poor communication/behaviour wasn’t about this specific programme but a problem in general. It is, and it’s not something I can change simply by having Arda tell me how it constantly pushes everyone away from me. I’ve known this for years and I’d changed it years ago if I understood how to.

Arda eventually offered to help me with some things involved in getting information required for this, if I wanted her to. She isn’t going to take any responsibility for this thing, of course. I have some tendency of making statements that make others feel responsible for my situation (I don’t intend to avoid responsibility, but others think so), but I have some feeling that this situation might be somewhat better at least relating to next year planning than it was back in October/November when I was still pretty much clinging to “type two realism” (ie. experience will teach me what’s realistic) as far as studying was concerned. My situation is not as open-ended now than it was back then, so that both enables and requires actively searching for programmes that fulfill my criteria or that can be accommodated to fulfill them. No gurantee that I’m not going to make these statements anymore, but at least I’m making a commitment not to. I did make some statement about not understanding the thing so how could I ask her (specifically) to help, but I don’t remember her response.

Today, as always on Thursdays, I had to set the table. I had my own meal cause I microwaved leftovers, so I assumed I would have to eat in my own apartment. Arda, however, supposed I would be setting the table for myself, too. I got confused, cause the way I understood it, Renee’d discussed the eating thing in my multidisciplinary discussion last Monday, which Arda attended, but she hadn’t heard of this idea. I explained what I understood of it - that I still didn’t understand its necessity, but Renee wanted me to eat in my own apartment cause that supposedly was the next step in training -, and Arda assumed Renee’d caught the idea from some other thing or something and said I could just eat with the others provided I behave. No need to say that. So I ate with the others and have no idea why I shouldn’t have. I don’t really get it why I would have to eat independently as something about “training”, cause I always do that when there’s no-one here or even sometimes when othr people are here. Besides, I’d much rather eat in my own place on days when it’s busy on the table (one of Renee’s arguments as well), and these do not necessarily correlate with the days when I cook for myself. Like, Fridays are usually extremely quiet while I normally eat leftovers then (I ate them today cause the others had something I don’t like), and by contrast Wednesdays are usually quite busy, and I have to eat with the others then cause I don’t cook for myself. Tuesday is the most understandable, and maybe that was mostly the day Renee was referring to, but overall I still do think her arguments are weak and mostly concern some arbitrary concept of what training is supposed to be that she might’ve gotten somewhere. By the way, one guy who had Renee as his coach (he now doesn’t live here anymore) had to eat with the others for reasons related to progress in training and sometimes even as punishment, so there’s really no logic behind this.

Was reasonably good at explaining the recent feelings to Renee. At first she kept telling me all of the same paradigms about making choices and not trying and all that, but I finally got it through to her that it confuses me when they have ever-changing paradigms and resultingly ever-changing expectations of me. She got into something about sometimes being able to handle more than other times. While I can logically understand this, in that I experience it myself, too, it isn’t making me any less confused. Like, on Saturday Renee was fine making the statement about too many changes at once and just going on scheduling, and yet you know the thing from three weeks ago. Renee tried to explain the difference - cause, while I know that one was extreme, I don’t understand what made it extreme. The thing seems to be that if I freak out and they tell me to be quiet and I get quiet, they seem it fit to go on with whatever we were doing, then when I keep freaking out, they send me to my apartment and when I won’t go and keep insulting the folk, it’s considered “extreme”. Obviously, it doesn’t work that way for the reason I stated above, but just for the encyclopaedia of elementary social rules.

Then I still tried to make clear that I was sick of paradigms. At first she kept saying that that was what my behaviour called for in them. Bullshit: just like my behaviour is a choice in the perceived absence of alternatives (because I’m too stressed to think them out), so is their interpretation a choice. When I won’t speak, I won’t speak and it’s up to my conversation partner or whoever else is present to decide what to do, and when I freak out, I freak out and it’s up to whomever I’m freakng out to to decide to send me to my apartment, ask me to be quiet, etc. For me, not speaking is “locked up inside” and freaking out is about not understanding, but that’s an interpretation just as much. In neither case, the other person often knows how to get me to act normally (be it speaking or not freaking out), and neither do I. It may be unacceptable - the staff may kick me out for it if they want - but that doesn’t change it. I was explaining to Renee that we already had the January 3 agreement - that if I freaked out too much, steps would be taken to have me leave -, so no need for paradigms about choices or changes or not trying or whatever. It’s just unacceptable, period. I don’t know if she got that - I hope she did but she didn’t respond.

In this context, I mentioned yesterday’s discussion at mental health and why it’d been going much better than the last one: that it was much clearer to me and also to the folk now and that I had an example to take. Renee seemed to take it for acknowledgement. She also got to mention that when they fill in for me, I might not agree, and I named the good part in my having gone alone yesterday (ie. the figurative voice thing) but also mentioned that when I got “locked up inside” and then didn’t consider something my voice, it was my own fault. It didn’t have any relevance to any events other than the recent family doctor appointment, but now at least I could communicate it.

Somewhere in this context, or maybe in the school / freaking out Monday context, she was telling me that I needed so much clarity in situations and wanted to know exactly what people expected of me. It’s a paradigm, but one that in this context is correct. Still, what in the world can I do with that? Yes, I need clarity, otherwsie I don’t understand, but how can I get myself to understand without this clarity? No-one knows how to handle that, and neither do I.

With the school stuff, Renee found I should discuss it with Arda cause she’s been arranging that whole thing for me. I feel kind of confused, cause no-ne knows how to proceed in this and I feel I’m getting stuck. There’s nothing anyone can do about that, I’m afraid.

Then we got to discuss the dinner thing. While I still don’t understand its necessity, I agreed to eat in my own apartment after cooking. Also about scanning and my being albe to do readers on my own and in my apartment. I think so indeed.

So, I had the follow-up admission thing at the mental health place. It went better than last time and there were several factors contribuing to this. One was that I was more prepared: I knew what the staff’s reasons were for having me go to mental health, I knew what was written on the questionnaire and the referral, and I knew what the admission folk did and didn’t know. The first question she asked, was whether I still had something to say about the December 12 discussion. That’s a question I can never really answer, but my strategy is just to say no and hope I really don’t remember something once the discussion is over. So far, I don’t, but that may be cause I hardly remember the December 12 discussion, so how much can I add to a discussion that really wasn’t a discussion at all? Then she asked the question that’d been a starting point in one of my “discussions that work” scenarios: how I was doing at training home. Cause of the January 3 thing, I said I was doing badly and explained. I sort of explained the December 29 thing, but was quite general partly cause I didn’t remember why exactly I kept freaking out (didn’t even remember that we were doing the freaking questionnaire) and partly cause not everything is relevant. I don’t remember exactly how the discussion went on after that, but I sort of explained that this often happens when something isn’t going my way or I don’t understand something (I thought we’d discussed that last time?). The folk asked something about how I felt about not understanding. She seemed to think one problem was that I didn’t want to admit not understanding. I explained that it sometimes happens that I feel bad about not understanding, but that often the problem is I can’t really explain. This was one issue I failed miserably on communicating my views. Also about that I did know that this wasn’t acceptable behaviour and that others are hurt by it and I said I didn’t do it cause I liked it or whatever. She asked me whether I might get angry for no reason, and I said I didn’t cause, even though others view my reasons as minor, there is always, in my view, a reason for my behaviour. For some reason, we also got into a discussion of some more subtle behaviour, maybe cause she asked repeatedly whether I understood how others felt about behaviours of mine. I explained that I understood with such behaviour as screaming/yelling, but I could have some problems with less obvious behaviour. I was thinking about one of my freaking out moments yesterday, which was after Yvonne repeatedly criticized me for apparently strange/overreactive behaviour. I got into something about my not being able to observe non-verbal communication cause I’m blind and having some difficulty imagining that it was expected to behave this or that way for whatever reason (after she asked some question about the blindness/not observing non-verbal cues thing).

Speaking of blindness, she also asked me some questions about that and how I coped with it. I explained that overall I can now cope quite well, though there are still situations that I hate like asking for help - though I do mostly do that now even though I feel weird about it. That is, by the way, one of my major achievements over the past year.

The folk asked me whether anyone had ever been there to help me understand situations. I remembered tenth/eleventh grade and said my tutor had tried but failed, cause all situations we discussed didn’t occur again. And of course the staff try to clarify, but they say I need so much clarity that they can’t explain. In this context - well, what got me to mention some of this - she asked me whether this discussion was difficult. Sure it was. She asked why it could be that she didn’t think I was about to be screaming to her. She supposed that because I didn’t know her, I was inhibited enough not to scream, but it really didn’t work that way: I didn’t feel like screaming at all. She asked me if these things would go better if the staff did something differently, and I said they’d been trying for months. This situations was a lot clearer than many situations with the staff, but the staff say they can’t clarify (or really, that I need too much clarity, but it depends on your point of view who has the problem).

She asked some general medical questions - concluded I had a healthy lifestyle cause I didn’t smoke, drink or use drugs (hmm, I ate a whole bag of sweets this afternoon…) -, that, by the way, had also been on the questionnaire (why did we fill out that freaking thing anyway?). She asked me what help I wanted from mental health. Didn’t really respond. Apparently isn’t uncommon that people can’t answer that question right away. She thought for a while and told me that my problem obviously didn’t have a quick fix (no, are you serious?). She proposed that we make a new appointment with her and a psychiatrist who is on her team. That thing is going to be January 26 at 3:45 PM.

Now what do I tell Renee or Arda? The one thing I *don’t* want them to conclude is something along the lines of: “See, you can have discussions.” They could’ve known that from my discussions with the psychologist in September. The thing is, I know quite exactly why this discussion worked out, and why it was in fact best to have me do it alone - not that it altered my communicative ability (I could just communicate today), but it did alter my figurative voice (ie. I felt I had one). You know, follow-up discussions always go better than the initial one. This is cause often, people have more knowledge about me and my situation in follow-up discussions than in the initial one, that they/I can build from. Like, when I said today that “my behaviour” was troubling me, leading to the January 3 thing, the folk had a basic understanding of what that meant. December 12 was about the most open discussion I’d ever been in: I had no idea what this folk did and didn’t know, I didn’t know why exactly the staff had contacted mental health, I had no concrete examples (after all, the December 29 thing hadn’t yet happened) and I hardly understood my own situation, and the folk didn’t know anything about my situation at all. Today I knew what the folk did and didn’t know (cause she knew what I/Renee had told her last time and possibly what was in the papers we gave her), I knew what the staff wanted me to go to mental health for (Renee’d been shouting several paradigms at me), I had a concrete example and a reason to say it was going badly (sometimes, almost being kicked out does have good parts), and the mental health folk did know some basic things about my situation. That allowed for “discussions that work” scenarios that could actually come true. Like, on December 12, there was nothing this folk could ask me other than: “What’s your problem?” Neither could the family doctor. I just cannot answer those questions - I can’t. That may be something about not trying according to Renee, but really I’m sick of all those ever-changing paradigms. The next discussion will probably go as well as this one (at least, I hope so) and I’m going to do it alone. If I find a workable way to communicate in utterly unclear situations, I’d be glad to do it myself cause it keeps me my figurative voice. All that is not true, is the idea that if you just kick me in the butt, I’ll do it - as some previous discussions have also illustrated.

By the way, eventually Ineke ended up taking me to the place cause Annemarie had an exam (and had already bought the school stuff for me yesterday). Hmmm, what did you say too many changes?

Today, I feel extremely confused. Freaked out at school for the first time - well, the first time I really freaked out. Missed communication skills class. Don’t think I quite care. Wandered all over the third floor throughout the class. Hell, I didn’t know one could get lost on a single floor. Eventually, I ran into some folk who seems to be an instructor in my programme, too, though I don’t know her. She had me sit in her office and tried to find Elma. As she couldn’t find her, she tried to call training home. Renee of all people picked up the phone. We had my multidisciplinary discussion today (well, Renee, Arda and those folks did), and, while Renee hasn’t yet informed me of what’s come out of it, I could tell from how she acted that they’d settled for a new “we don’t care, it’s all her choice” paradigm. Or not so new, maybe just officially declaring the January 3 agreement. Indeed, she got into a “She has to say what she wants” litanny. Well, duh! Well, I want to do these freaking studies and I want to keep up at training home so I can move out in a normal way by the summer, but I’m not holding on in either setting as it’s going now. Those damned decisions won’t change that. If it is all my choice, why isn’t everything going well? Why in the world am I getting stuck? I ask that same question all the time. It’s why I have the freaking mental health place thingy tomorrow. Yet the thing is, while I don’t expect others to know the answers - I’m the most skeptical about the whole mental health thingy of all -, I at least don’t pretend I have them myself. The staff continuously do. On Saturday, as I freaked out sort of when Renee wanted me to have dinner at my own apartment on Tuesday for no apparent reason (she said being annoyed had nothing to do with it), it was that she was making “too many changes at once”. How much too many can be one? Or maybe two, as the mental health appointment is also unusual, but she had no problem changing plans as to who would be taking me there etc. today. And this afternoon, it’s again that I have to say what I want. I am so damn sick of those constantly changing paradigms! If you don’t know, say so and finally stop blaming me in constantly changing fashions. If you’ve decided you don’t care why I’m getting stuck but my way of getting stuck is unacceptable, say so and kick me out of here. It’s my behaviour and therefore, I’m at fault, but please stop those constantly altering attributions. *That* is too much change at once *and* it is not making decisions - on your part.

Elma eventually came round. As I tried to explain my confusion, all she said was that I had the capacity to do these studies (you mean the intelligence), but my type of college is oriented to group projects and my specific programme requires social competence that isn’t my strength. That for God’s sake wasn’t what I was saying. It wasn’t in the context of a communication skills project that Dannie was doubting my getting my freshman certificate and it wasn’t within the course of job field orientation assignments that my classmates were criticizing me - at least, not any more than they were criticizing each other. If it were, I could just not have cared - it at least wouldn’t have relevance to my life beyond academics. But it weren’t. It was all in the context of what is normally thought of as just part of school life. And I can’t hold on. Elma didn’t react and started asking about my assignments and tests and trying to sort of plan them. I didn’t understand much of what she said, but after a while and with both of us having class, we quit and I went to reporting (Dutch writing, boring!) class.

I tried to explain some of my difficulty to my classmates over dinner. I don’t know if I should have, but they asked and I was less stressed so got my thoughts more clearly. I just feel so stupid that, when I quit, I’m likely kicked out of here (oh uhm, “we’ll plan a date when you’ll leave”) and will have nowhere to live, but now that I cannot keep up, everyone is calling it “my choice”. By the way, no-one ever specified that I would be kicked out if I quit, but Arda always said in some dramatic voice that “it will certainly have consequences” and in fact this education was one of the conditions of my previous “last chance” agreement in early July. I just feel totally confused. I tried to show my understanding of the staff’s not caring, in explaining about the December 29 thing and the January 3 agreement, but just because I understand doesn’t mean it’s easy to deal with. Hell, I don’t even know what is “extreme behaviour” as clarified in the agreement, even if, when describing thaat scene, it’s no surprise to me that everyone considers it extreme. I’ve now been acting curtly to staff members three times since January 3 and freaked out today at school. Wonder if I’m going to be kicked out. I feel terribly lonely and left out, but I know I shouldn’t as I myself supposedly chose to have it this way. Sure.

Freaked out again later when we were about to go to job field orientation. My classmates talked me into going to class and I at least didn’t freak out any more, though I didn’t learn a thing. I went to psychology cause so did Elles and Carmenchita. I don’t remember much from it except that I asked the folk about my grade. Elma had namely E-mailed me saying my exam had been found and I scored an eight, but my instructor, Koos, had no idea where the exam was so hadn’t seen it at all. I think he’s going to ask Elma.

It’s almost midnight. I guess I’m going to sleep - or trying to. Yesterday night, I only slept for about three/four hours for no particular reason at all. Hope it’s going to be better now, as tomorrow will be the appointment at the mental health thing. Annemarie will be taking me there instead of Renee cause she’ll be buying some school stuff for me as I have the discussion. I hope that if there is a paradigm saying communication is easier with no filling-in, it’ll prove to be true, and otherwise it’ll go well tomorrow anyway.

I’ve been putting off writing about the “Ashley treatment” - a case of a nine-year-old, severely cognitively and physically disabled girl whose parents put her on hormone treatment to attenuate her growth - for a few days, because I don’t want to do another careless “this is child abuse” rant. Though I do oppose the treatment, I think it’s more complicated than simply being for the parents’ convenience. If the argument were simply that the parents wanted a child-sized adult kid, I think no ethics committee would’ve agreed with it. I read that in previous decades, high oestrogen was given to teenage girls for purely cosmetic reasons, but in this time, I don’t think it would be considered appropriate if the child didn’t consent - or couldn’t consent.

Honestly, I do agree with Ashley’s father that this is something different from a cosmetic procedure or even something for convenience. It’s about parents’ perceived lack of alternatives. Firstly, Ashley was diagnosed with static encephalopathy, a condition assumed not to improve. She currently has the cognitive and physical abilities of a three-month-old at least by measurement with currently used evaluation methods. She cannot move most of her body parts voluntarily, so she requires assistance to change her position - something necessary to prevent infection. She’s not the only person in these circumstances. There are, in fact, quite a few people in this physical condition, with or without intellectual impairment. One major difference between Ashley and the other people I know about, is that those are getting the support they need - Ashley is not. Besides her parents, only her two elderly grandmothers care for her. This could be the parents’ choice, but I assume it’s not if they see it as one of their arguments for the “Ashley treatment”. So one of the problems is the poor or unaffordable support of disabled people in their area or in general.

At first, I was surprised to find a disability rights perspective on the issue mention the “social model”. What did barrier removal have to do with a girl who supposedly wasn’t going to improve anyway? Then I read on and realized that lack of personal care from a good support network (professional or not) is a barrier, too.

It is a barrier not only to Ashley, but to her parents as well. Ashley may have a normal life-span, so how do the parents imagine caring for her when she’s fifty and they are old and probably themselves in poor health? No child-shrinking treatment is going to solve that problem - only good and affordable support is.

There’s another problem, highlighted in the father’s talking about the appendectomy being done: Ashley’s lack of (effective) communication. While I don’t really oppose the appendectomy as such, if it really has no risks, I do wonder what really made this procedure a necessity. The child can’t commnicate when she’s sick. However, an appendix infection is not the only thing that can make a child or adult sick. How are the parents going to tell when Ashley is ill, then? Assuming that there really is no way in which Ashley can, or is ever going to learn to communicate - no-one can tell what the future will hold, but let’s assume that the label of static encephalopathy defines Ashley’s outcome -, it requires constant supervision to make sure she isn’t ill. Are the parents going to watch over their daughter day and night, year after year, for another several decades? And if they don’t or won’t, how do they prevent serious harm to their child? I do believe it ultimately requires more than a child-sized adult and two dedicated parents to care for her for the rest of her life.

I know that some parents see it as their duty to care for their disabled child or to keep him or her out of a nursing home. I know that, if the parents really can’t get any support for Ashley, this is the choice they have. And, while I don’t advocate nursing homes - disabled people should keep out of them as long as possible -, that doesn’t mean parents are required to care for their disabled child (or adult child) - there are other options, or there should be. We’ve seen the numerous cases of murder of the disabled, defended by the fact that the families had no support. The system is failing and should change, and no amount of growth attenuation is going to help that.

Made some good progress in book scanning this evening. In fact, I finally finished scanning all my readers for this quarter except for the communication psychology reader that I still have to buy next Monday. The career psychology reader was difficult to scan and we have a really difficult assignment for this class. Arda seems to love it, cause one of the theories discussed has something to do with decision-making. It’s her ultimate paradigm. Not mine anymore. “Realism” can’t happen without decision-making of course, and not deciding - or not deciding what others want you to decide - is as much a decision, but I’ve greatly come to dislike the connotation that you can be whatever you like as long as you make a commitment to it.

My situation, as far as how I imagine it, is by far not as confusing as it used to be anymore. For example, I have only two possible college majors now instead of seven or more. I also got some things clarified in these few months, like how I will be doing administrative tasks. My image of my overall situation is still utterly unclear, and that’s why I want to remain motivated to change. It’s also sort of related, I must admit, to the fact that Arda still seems to believe there’s a very capable, almost completely independent girl hiding behind this image of my current situation that I painted yesterday, and hence any lack of progress is seen as a lack of motivation or willingness to change, for whatever reason, not as something that’s just realistic for me, like all the other clients’ outcomes were presumed to be. One girl named Marije had been in training home for maybe as long as four months, fully aware that her current situation was all she could achieve, only waiting for a place to live where she could get the assistance she needed. Everyone knew for months that, cause of her brain damage, she just wasn’t able to live fully independently. That’s not my situation. My “care plan” still lists that I’m assumed to be able to go to college or university (full-time, presumably) and live in my own apartment independently, provided I learn necessary routes, by September, 2007. I’m still motivated to work towards that goal, even if I’m pretty pessimistic especially regarding the independent living part, but I really hate the connotation that whenever I don’t seem to be meeting up to that standard, I’m presumed to not be trying hard enough or not wanting to make decisions. I don’t want to give up, cause giving up means being unwilling to put effort into something. Yet at the same time, I sometimes just really have no idea how to do something or I really don’t understand. This happens quite often, in fact. And just because no-one knows how to teach me to do the thing or how to help me understand, doesn’t mean I’m not trying hard enough.

Lately, I’ve gotten increasingly sick and tired of the ever-changing paradigms held by staff members. They’ve already said ages ago that they have no idea how to deal with certain problems of mine, and I’ve long known that neither do I. That doesn’t mean they need to accept my behaviour - they don’t. Like, with some behaviours, it’s obvious (aggressiveness, for example), but they could even say that they can’t deal with my getting “locked up inside” for example, so I’d have to leave if I didn’t improve this. Still, this doesn’t mean I would deliberately act this way. All it means is that my behaviour is so inappropriate that training home isn’t the right place for me anymore. On Wednesday, for example, I was pessimistic. That’s not cause I want to freak out, but cause I’ve known from previous experiences that just making a commitment to not behaving badly, didn’t mean I wasn’t going to freak out. It’s behaviour, and behaviour can change, but it is only going to change with appropriate strategies. I think I mentioned this before, but a few months ago I watched this parenting programme on TV. A five-year-old was constantly whining and screaming for his mother’s attention, so the psychologist advised her to ignore the tantrums and reinforce appropriate behaviour. Suddenly, the kid began to ask her for what he wanted. I’ve always wondered how he knew that this was how he was supposed to act and how he managed to put together the right words for each of his questions (that were pretty well-worded and polite). In other words, of course I can learn to behave. Even if I’m “crazy”, I can. However, just knowing that I can’t freak out, or should speak, or whatever, isn’t going to make it happen. That’s why I asked, on Wednesday, what I was allowed to do instead of what I wasn’t. I got no answer, or I got one that I didn’t understand but then I don’t remember. If no-one knows how to deal with my behaviour, that doesn’t mean they have to accept it, but it doesn’t mean that, if they stick a paradigm on it that assumes I can change it if I just commit myself to it, I’ll suddenly be acting normally, and neither does it mean that, if they stick a paradigm on it that assumes my behaviour is somehow “part of me”, that the hope for change is diminished. Arda can hope that I’ll learn not to get “locked up inside”, and I hope for the same, but at this moment I don’t believe it cause I don’t know how I am going to achieve it and neither does anyone else.

When at the rehab centre for computer training (MS Outlook) today, I ran into Petra, a woman who was at the centre for leisure and volunteer work rehab when I was doing my basic rehab, and who is now finishing her programme cause she was home with a broken leg all of 2006. She asked me how I was doing in Nijmegen. I have no problem saying that I’m not in Nijmegen and explaining what I do now, but it did feel confrontative to meet a woman whom I’d last met during my time of being most radically determined - oh well, pretending I was.

I remember the images I had of my future back then. They were the same images I’ve always had when I envisioned going to college: the one image was a completely normal, successful college student, involved in politics and living completely on her own, and the other may’ve started college, but could never keep up and ended up completely getting stuck within three months. She would’ve been in the mental health system (though I didn’t think out how she’d get her referral, but well) within half a year. Now I see the second one coming true and that hurts. In one sense, I’m of course still in college and you’re not crazy cause you’re in the mental health system but the other way round (and well, what’s “crazy” anyway?). IN another way, however, it makes me feel like giving up cause, apparently, the black image is coming true. This is not so much cause I’m in the mental health system, but for how I see I act. You see, oftentimes I was able to excuse or rationalize my behaviour cause it occurred only in one context. Like, in high school, my tutor was the most bothered by my getting “locked up inside” and, even though he used to use it as one of his reasons why he thought I needed help in early 2004, I never quite saw the logic in that. And my parents were the ones to whom my behaviour trouble was mostly directed, and they don’t even see it as significant now. Also, it wasn’t till as late as December, 2005 that I realized that my behaviour wasn’t normal even in certain contexts. Now I see how, though I still mostly misbehave at training home (probably cause that’s where I am most of the time), I get “locked up inside” in a variety of situations and it’s causing me to function poorly, too. The only thing that makes it worse than the image I had in my mind, is that I am not even in college (well, not full-time) and I’m not living on my own and I still experience it. But I have still hope that I can improve somewhat.

The thing is, I cannot have that other image for an alternative anymore. Well, I can dream of it and work towards gaining skills so I might more closely resemble her, and I might even become somewhat like her if I manage to keep my figurative voice, but I cannot deny my actual problems anymore. And that’s essentially what that other image is: like Mary from Cal Montgomery’s article, she has all her impairments denied. She might be discriminated against, but she isn’t handicapped. And I seem to be. And it isn’t about blindness anymore. Hell, I wish it were.

Well, I got the referral, but it didn’t go the way I wanted it to go at all. Pretty much, Renee asked for it, cause I was majorly “locked up inside” and the only things I managed to say were that it wasn’t working out and to confirm Renee’s suggestion that no evaluation regarding the stuff had ever happened. Doctor got to write something about this on the referral. Gave the paper to me while Renee was saying I now probably didn’t agree with the whole thing cause it was her asking for it. I have one reason why I’m ambivalent about going to mental health, and that’s that the January 16 appointment may go just as wrong as the December 12 one did. I told Renee so while in the car, when she kept saying I probably didn’t agree and blahblahblah (I told you on Friday that I did agree but I told you just as (un)clearly that that wouldn’t change my ability or inability to communicate) and she got like well if I already think it’s going wrong, it will. That’s true. That’s why I made up ideas in my mind yesterday of how it might work at the family doctor’s. They all involved too little initiative from my part (read: hardly any initiative at all, though none had Renee asking for the freaking referral). That’s why I’m thinking out similar scenarios in my head for the January 16 thing. They all allow me to have my own voice, literally. What if I don’t? Let’s not think about that. That’s too negativistic, even if it’s more realistic. Besides, Renee says that if I’m not saying anything, I obviously didn’t try, so obviously I should be able to have a voice.

After going to the bank for some stuff for Internet banking, we went to Philadelphia’s regional office (that’s where Renee had parked the car to go to the bank) cause Arda and Renee wanted to talk with me. I think, for some reason, I wanted it to be a simple announcement that either I’m going to behave or they’ll kick me out. That would leave me no room to get to a better understanding of the whole thing, but it would’ve been more clear as that was indeed what they meant. Sometimes, I just wish I were an antisocial, egoistic psychopath who just didn’t care about how she behaved. The thing is, I do care, but that’s not going to make it any more acceptable. And the thing is, no-one knows what to do about the whole thing, but that isn’t going to make any of this more acceptable, either. “Just keep on trying,” Arda told me and I felt triggered, but corrected that belief sort of. She says it had previously been going better and only got this bad within the last few weeks. I don’t really see that - temper tantrums are temper tantrums no matter what (Renee judged the severity by how to her inappropriately she had to act to manage me, but I don’t understand that) and they’ve been occurring forever. So I’m kind of pessimistic about being able to improve. So more just holding on. I could do it sort of in early July, when Arda and I made similar agreements, but you know how that escalated by the middle of August. I cannot have that happen now. I’ll just have to keep up till either I find some magic way to behave or I’ve decided (yo, I love that paradigm, not!) that I’m too stupid for this.