Comments on an Article Discussing the Autism Label

I just found
this article, which highlights the value – and lack thereof – in labelling, particularly for people on the autistic spectrum. It was a similar article, in 2004, that got me to quit the ASD suspection back then – mostly, cause I didn’t want to be thought of as having a “fashion disease”.

The thing is, it isn’t about getting labelled, but about having a problem that needs to be addressed. Like, as the article says, some doctors in India will not label a child autistic even if they know of autism, but will instead diagnose mental retardation, cause they realize that most educators and doctors haven’t heard of autism and the thing is that the child needs services. A problem would arise if the higher-functioning autistic child were treated inappropriately on the basis of her mental retardation label. On the other hand, if service providers required a label cause of funding reasons, yet were willing and able to serve that child or adult based on her individual needs, really it doesn’t matter what you call her diagnosis. For example, Marjan, who wrote my justification for services, was fabulous at explaining every service need of mine by my blindness, while some of these same needs have gotten people to think I’m on the autistic spectrum – and not cause some characteristics are common among blind people as well as autistics. Now this paper is only meant to show to the care office that I really need the services I receive, so it really doesn’t matter why I need them as long as no-one is going to jump up and say that, being “just blind”, I shouldn’t need these services. It was not until the people in my independent living training home were out of ideas as to how to help me, that we turned to the mental health centre. And, even though we did get there with a suspection of what might be wrong, at least I wouldn’t have been content with a simple yes or no answer to the question whether I’m on the spectrum. After all, if I wanted labels, I’d have enough already, but the thing is, the strategies I and others know to work for people with these characteristics, don’t work satisfactorily for me.

There is, of course, another dimension to diagnosis, but in this sense it doesn’t matter whether your diagnosis is official or self-made. This involves understanding yourself (or your relative). For example, in 2002 and 2003, I was often expected to empathize with other people. At the same time, I knew that I didn’t lack respect for others, but really didn’t know how to show that empathy. When I wrote to an autism forum on this in April, 2003, I was told that social rules can usually be felt intuitively by NTs. That explained why just thinking more consciously about how I acted, didn’t always work – it wasn’t about simply controlling myself (that is an issue, of course), but also about knowing what to do alternatively. After I understood this, I didn’t even need a self-diagnosis of ASD to realize this.

Another thing the article highlights, is how expectations make it almost necessary to label children. Like, it is only because tests are usually timed that children with learning disabilities need to be recognized as such to get extra time. If children who need it were given extra time, no-one would need to label them LD. This is also what I see happen in the preemie community. It is not cause we want labels, that we invented “preemie syndrome”, but cause children are not recognized as needing services cause they are almost like people with many labels, but may not meet criteria. “Preemie syndrome” is also a label that helps us understand ourselves or our children. Like on PREEMIE-CHILD, parents understand what preemies are going through even without officially recognized diagnoses. We know that preemies have problems that make them stand out in school. Many of these are similar to those of children with ASDs and ADHD, and that’s why we may be looking to be officially diagnosed. It’s not so much because we want labels, but cause we want to understand ourselves or our children and we may be in need of treatment. If “quirkiness” got us that understandind or treatment, that would do as well – but then there’s the risk of quirkiness becoming a diagnosis.

Autism is not a tragic monster that steals away a child. Mercury parents who consider their children a “poison waste dump”, with this idea, overlook their child’s individuality – even if they don’t mean to. Autism is an essential feature of a person who may be diagnosed with it, but it is no more a feature of that person than neurotypicality is an essential feature of NTs.

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Girl’s Family Sue over Injuries in Womb

So, now foetuses have gained the human right to claim damages cause of injury. I think I could do a better lawsuit, having been born prematurely cause my mother’s gynaecologist was doing a nonsense experiment on low-dose aspirin in the prevention of premature labour, while she was not advised to take effective measures to prevent early delivery. With a good, whiney story about how badly I and my parents suffer from all my disabilities/difficulties and a few more labels, we should be able to catch at least twice as much as this family, huh? Besides, now that babies can claim damages cause of injury in the womb, why do we still allow the worst and most common injury to foetuses all over the world, ie. abortion? If a foetus has so many human rights that she can claim damages cause of being injured while still unborn, she should have the basic human right to life as well.

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Brief Mental Health Update

Went to the mental health centre with my parents yesterday. Turned out the folk had gotten an ASD suspection herself, too, and that was why she wanted to see my parents. I could’ve known that she suspected one of those disorders with onset in childhood cause why else would she ask to see my parents, and an ASD sounded most logical to me (but well, you know the power of laypeople looking at mental health info), but I didn’t know in advance why she wanted to speak with my parents. Don’t know if it was an advantage or a disadvantage that, consequnetly, neither did my parents. In any case, they were quite cooperative, to my surprise. Of course, my father’s first remark was to say “So what?” to the ASD thing, but the folk clarified that it wasn’t so much meant to label me, but rather to determine if there was a possibility for treatment. We all also agreed that, while the staff problems at training home had been what led us to consult the mental health centre, it obviously wasn’t only a staff/client problem – if it were, I’d have left this place voluntarily ages ago. So the folk had some questionnaire which she administered to my parents – well, in fact my father was the one answering most questions cause a lot was about early development, which he knows more about since he was a stay-at-home Dad. I sometimes made a remark in between. Overall, I think the discussion went a lot better than I’d expected. Bottom line was that the folk did see some treatment possibility and asked me if I agreed. I obviously did, but wondered about the June 1 thing, cause of course they have a waiting list. The folk, who didn’t seem all that happy with the whole leaving training home thing in the first place even though I tried to be as objective as possible, said it would be no problem, cause they could hand over my case to Nijmegen once I was there. So that was a good thing. Discussed the situation with Arda today and she seemed to agree to my decision sort of.

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Preemie Surviving after 22 Weeks

A preemie born at 22 weeks survived. So what do I think?

This particular case – so sensational that it even made it to the Dutch media -, involves several issues relating to prematurity and the pro-life cause in general. Firstly, I see some pro-lifers, like Wesley J. Smith referring to this fact in relation to viability clauses in abortion. In this respect, I must say that the Dutch abortion law, which is primarily based on the baby not being viable, was already tightened a few years ago cause of the theoretical possibility that 22-weekers survive: abortions used to be legal up to 24 weeks gestation, while now it’s 21 weeks. While I do think that this child could provide further evidence for
viability at 22 weeks, it is by far not the pro-life breakthrough that it may seem. Last year, when doing an article on preemie ethics, I already came across research dating from 1993 that referred to preemies born at 22 to 25 weeks gestation (Allen et al. 1993). Apparently, Amillia may be the first to prove that it’s possible by actually living, but the theoretical evidence has apparently existed for years – and that could have and should have influenced abortion lawmakers already back then.

Also, of course, just because one child survives, doesn’t mean others will, too. In the Netherlands, preemies born before 25 weeks gestation are not resuscitated as a rule. So neither abortion lawmakers nor neonatologists are necessarily going to take this case seriously as far as policymaking is concerned. It’s a medical curiosity and a nice press story, sure, but I’m really skeptical that this girl’s survival is going to do anything about the pro-life cause either way.

The preemie parents, of course, highlight another issue: what I will call the “miracle myth”, ie. the fact that most media report on surviving preemies as miracles who have beaten the odds without taking into account the fact that most will suffer long-term consequences from their early birth. I do agree that this is not the best reporting style, but it’s what people – especially those who have never heard of preemies – want to read. That’s what newspapers are all about, after all. Of course, I’d much rather have the media stop making these allegations, cause they’re not true, but what reader would like to hear that a child may have survived against the odds, but that she’s likely going to have severe disabilities? Not even Amillia’s own parents, who might face the truth in a few years, would like to be scared by doctors’ statistical mumbo-jumbo. Besides, surviving after 22 weeks *is* a miracle. Honestly, I’ve seen newspaper articles more guilty of following the myth than this one.

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Thoughts on “Realism”, My Current Situation, and Self-Confidence

Now that my “real(istic)” situation seems to have been defined on Monday – well, mostly, cause they do want to wait for the mental health thing to be finished before having me leave -, I keep having images in my mind about what my situation was like when I first came here, how it evolved, which it is now, and what in all these images denotes “realism”. And I wonder about those statements made by my parents, who pretty much assume that my core problem is a deep lack of self-confidence. What is being self-confident, anyway? The definition has changed over time.

In early 2006, when I first came to training home, I seemed extremely self-confident on the surface. Self-confident in the way my parents seem to mean it: determined to make high achievement. I remember making a “statement” on January 23 – five days into being here -, by calling Radboud’s student counsellor, which was really not an urgent matter. The only reason why I did it, was to show the staff that this was where I was going to be. Three days later, I convined Renee to allow me to travel to Nijmegen alone. That travel marked the first scratch to my thin surface of self-confidence: I made it to Nijmegen and back, but not in the flawless manner I’d imagined I would if I were the competent blind adult I thought I would be.

The month of February was characterized by what Kenneth Jernigan calls “rebellious independence”. I had frequent arguments with Renee over wanting to do things independently and Renee not allowing me to. The most notable examples were the route to the supermarket and having breakfast in my own apartment. By the March 6 multidisciplinary discussion, the folks created the positive image of me that I wanted them to have. I still suspect that Arda really pushed Renee on this matter. I ate in my own apartment for breakfast, started cooking with Ellen, was not supposed to be saying I had a doorknob’s social skills anymore, and Renee wanted me to think of how I wanted to live once I was in Nijmegen. It never got to that, cause the self-confident facade fell off on March 21.

From then on, I spent my days living in the here and now, and, for so far as I did future planning, it really had no relevance. In my career psychology paper, I wrote: “This usually had the form of at random appearing images that I first idealized and then threw into the dustbin using a standard procedure.” Starting in March and decidedly ending in early October, I used an approach where I believed “realism” would form itself over time and experience would teach me what my real situation was like. I never really abandoned this approach, even though I decided I would. The way of looking at my situation has its good parts, in that it is looking at the factual, natural situation I’m in. However, it has its major drawbacks for me personally, in that I have a real problem seeing the forest for the trees. You see, there are always pictures of my situation, but who knows which is definitive, or so definitive that it allows one to decide I’m done training? Even as early as late October, I openly worried to Renee that we would be going on just experiencing the situation as it was and not taking any steps to direct it till, after so many months, it’d be time to have me leave and the staff would look at the situation of that very moment and decide that was “realistic” for me. Is this what happened last Monday? Sometimes, I can’t let go of the feeling it is. You see, no-one is going to tell me that last week Saturday was not the triggering event to decide I was done training. I know pretty well that Renee wanted to kick me out, but Arda did not. Saying I’m done training is a way of allowing me and Arda to seriously plan for a living situation after I leave rather than just kicking me out – that’s probably why Arda has such a problem with my even mentioning the phrase “sending away” in reference to the June 1 thing -, but of course the thing is that I did behave so badly that Renee wants me to be kicked out.

Does that make last Monday an arbitrary moment for deciding I’m done training? I don’t think so. You see, I already had the idea that I couldn’t ignore my behaviour in painting my picture in early January. At the time, Arda was still assuming I would improve. Not anymore. Now she was the one telling me that I would always need some assistance with creating some structure. And I agreed, not because I would have to, but because that’s what I could’ve been telling her for weeks, but didn’t want to cause I wanted to remain motivated for training. Now does it matter whether Arda or anyone else agrees to the current picture of my situation? In some respects, not at all. Like, my parents don’t want me to get housekeeping assistance. I don’t care: I’ve experienced that it costs me too much energy to do all my housekeeping (especially deep cleaning) when also studying and having my hobbies and social activities, so I’m glad that I can have a professional housekeeper do some of my cleaning. Others would decide on letting their rooms be dirty, and some people would drop hobbies or social activities to do housekeeping. It’s my decision not to and I made that decision already a few months ago – in fact, I didn’t have major difficulties with it on September 22. The blind community might believe I buy into stereotypes, but I don’t care. I want to have a nice life, not spend my whole life pouring energy into conforming to some picture of what a competent blind adult is supposed to be like. If that’s lazy, so be it.

However, having a housekeeper do your deep cleaning, is not considered a problem by most people when you’re blind. Some people have different attitudes about blindness and what it’s supposed to mean, but I can be happy telling them that’s their personal opinion and I don’t care whether employers are having negative attitudes about all blind people cause they see that I have a housekeeper do my deep cleaning. I know that blind people can do exactly the same that sighted people can if they just pour 200% extra energy into it, but I don’t think I’m obligated, by the fact that I’m blind, to pour that 200% extra energy into life. If I want something, I have to pour extra energy into it, sure – I cannot expect the whole world to adapt to my blidnness -, but, to a certain degree, no-one can require me to do something that I feel costs me too much energy for the value it has to me. Like, of course, if I didn’t get funding for hiring a housekeeper, you might think I’d be forced to do deep cleaning myself, but really, I wouldn’t: I could decide to let my room be dirty. Sure, my blind acquaintance who did do all her deep cleaning and hence had an extremely neat house, might not get a job cause her employer had seen my house and thought all blind people keep their places dirty, but that’s not my responsibility.

There is another issue, of course. I wrote about that on September 22, too: assistance required cause I have behavioural problems. This is generally less accepted, for reasons on several levels. First, certain people believe I really don’t have behavioural problems. My mother sometimes holds that view, almost to the point of believing the whole world has a problem but I’m fine. It may seem great, cause it’s placing the blame on everyone else and not me, but it’s not, cause I am the one who has to live in this world. You know, mental disorder is sometimes simply a matter of being in a minority and not being accepted by the majority – homosexuality before 1973, for example -, but until most people in the majority are going to make up their minds, is it strange that the minority think they have a problem? That’s why I sometimes say that the real problem is not that I need clarity, but that others can’t be clear – but the thing is, the majority don’t want/need clarity when I do, so I presumably have a problem.

That doesn’t mean I’m suddenly not going to need that clarity, for example. That’s a big problem I’ve always had with that paradigm of Arda’s: whenever she said I needed too much clarity, she seemed to connote that I shouldn’t be having that experience. My mother seems to think so as well, only she calls it “nagging” when I ask for explanations. In some situations, indeed, I may be able to adapt to the fact that there’s really no way to understand – like, I’ve stopped wanting to clear up the Arda/mother argument over my needing to live on the streets when my parents won’t take me into their house, after both have told me a different story about when Arda said that and why -, but sometimes, not understanding has implications. Like, in November, I was expected to change my behaviour at school, and I didn’t understand how. When I stopped asking for clarification even though I still didn’t understand, it meant that I didn’t know how to change my behaviour. The simple idea that the whole world has a problem but not me, or that my only problem is that I think I have one (which the wanting clarity when I cannot get it may be interpreted as, too), isn’t going to make my life in this world easier. What’s the problem with seeking help with this?

One thing is, which I highlighted on September 22: the risk of having responsibliities taken away. But I don’t think that this is an intrinsic problem in having services on the grounds that you have a behavioural or mental health problem – whether it’s mental health services or independent living assistance or whatever. You see, there are really skilled self-advocates who do have services on this ground. In this sense, I’m inspired by Amanda Baggs. I don’t feel inspired by how little assistance she thinks she needs (self-confidence as it’s used by my parents), but by how self-confident she is about knowing what she needs and advocating for that. Of course, you’ll say, I’m not like Amanda Baggs, cause she – being severely autistic -, has much more serious behavioural/communication problems than I do, so she requires much more assistance than I do. I agree, but that’s not my point. My point is that my situation is my situation no matter what. I might be able to progress in whatever way, but at this moment, this is how my reality is. In 2006, I stood firmly for an imaginary me that was realistic in some ways (like being a college student) and not in others (like having no behavioural problems at all). Now that I have a more realistic image of myself – or think I do, at least -, I want to stand firmly for that as well.

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Leaving Training Home by June 1 and Really Confused Thoughts

We got a date picked for my leaving training home. Well, Arda got one. It’s going to be June 1. I’m too confused to write a clear entry on it. Renee informed me about the decision this morning, and pointed it as if it were cause of my behaviour. I namely freaked out quite majorly on Saturday cause of a big parents fight Friday night. The thing is, on Sunday, Arda was still telling me that they wouldn’t kick me out cause Arda and the manager are the ones deciding on kicking people out and Renee could decide not to want to be my coach anymore, but that was “her professional responsibility”. I didn’t agree and still don’t – I think Renee is pretty fair not wanting to be my coach anymore. She isn’t my coach anymore after all.

Now the worst thing is not that I got kicked out – I’d expected it and that’s why I tried to call Arda on Saturday when things were getting out of hand -, but that Arda lied to me. When I spoke to Arda this afternoon, she didn’t want me to call it being kicked out, but I thought that was one of her usual diplomacies that says that kicking out means saying I’ll have to leave tomorrow – while on May 31, June 1 will be tomorrow. According to Arda, I’m done training and this conclusion requires one to decide on a leaving date. Then I wonder how come they decided exactly last Monday that I was done training, while four weeks ago, Arda was still talking about the goal being completely independent living (well, with some housekeeping assistance) while being in college. Now I do think the current picture – that I do require assistance with some structuring (for lack of a better word) tasks -, is more realistic, but why in the world did she realize this exactly this Monday? And why did she tell me this afternoon that the picture had formed itself mostly within the last three or so months, while last month she still had such a different opinion? We’d planned on actively seeking a living place for after training home starting after last Monday (the reason we didn’t start earlier was cause I had lots of exams), but now it seems the staff have already drawn the picture while I was still picking my colours. I do think serious decision-making has to be done and I’m extremely willing to do that, but it just feels like what I wrote about on February 2: the thing where we’ll just pick a date and tell me to just seek that I get a place to live and something to study and go ahead and we don’t care. Arda did say she was willing to help me get the studying stuff clear by calling the student counsellor etc., and that she was willing to write to SSHN (student housing) asking for an urgency declaration and stuff. Still, I do feel they’ve just stopped caring. Well, Renee has never cared and all the tiny bit of caring that she did have, was gone last Saturday – and I can understand that. I thought Arda cared, but I’m sooo confused by all this. Besides, I do feel really bad about the fact that Arda is blaming the June 1 thingy on her colleagues, cause they were supposedly pushing her to pick a date. Still, I feel kind of let down.

The thing is, I don’t think I ain’t done training. I think it’s time to concentrate on seeking a new place to live and study indeed, and if I can find those, I’d be eager to leave training home tomorrow. The problem is that I can’t get housing by June 1. My parents refuse to let me live with them. When Mum told Arda so, the first thing she said was that then I should be living on the streets. Really, I do feel so extremely hurt by that. It only reinforced my feeling that Arda just plain let me down, even though by then Arda had already talked to me and informed me about the whole done training, required to pick a date etc. thing. She also said that, if SSHN isn’t going to offer me housing by then (which I’m pretty sure about they don’t, but well), I could also temporarily live in some other Philadelphia living project. As if that project is looking for a behaviourally disturbed girl like me.

Speaking of behavioural disturbance, my mother did convince Arda that they’re supposed to wait for the mental health thing to be finished before kicking me out, because they were the ones starting the whole thing. Arda added that what might come from this, might influence the picture of my situation – even though labels or the lack thereof never change anything and Arda said she could write a final report about me today and would be able to convince CIZ of my need for assistance in areas that I don’t consider blind-related. By the way, my parents are supposed to speak with the mental health folk next Wednesday at 3:00 PM – to my surprise, they agreed.

I do feel confused by all that’s been happening this week. First, on Friday, the mental health folk called and so I had to talk my parents into speaking with her. Then, cause of lots of different topics being discussed, we ended up in a major fight Friday night and I left the house in the middle of the night. I called Rakkersveld (the place we’re supposed to call when we’re in trouble and the staff’s gone) and later a cab, which drove me to my house. Then, on Saturday, I had the major trouble with Renee, mostly over the parent fight. I was still confused on Sunday morning, so Arda allowed me to come over to her house to talk with her (she was coming to training home to drive a new girl to church). That was when she said all the stuff about not kicking me out and all. Then in the afternoon I figured out my communication skills assignment was getting nowhere, cause the interview had already gone extremely bad and futhermore, the tape was damaged (even though we tested it three times) so my analysis was bad, too – analysis means typing out the interview and commenting on your performance. Then on Monday I freaked out over lots of schoolwork still left to do. School was surprisingly nice, but I do think seriously about quitting. I also broke my radio by throwing it to the ground – the CD player is as fine as it used to be, but the radio doesn’t work. Then yesterday, I found out a girl who used to live here, has died at the age of 22 from a brain tumour. The cremation will be on Friday. And then today I was told about the June 1 thing. Really, it’s all too much and I feel like no-one cares. My sister was telling me that it was my fault (the June 1 thing). Mum kept telling me how I was supposed to live completely independently and “you’ll have to live independently in half a year”. Three months, she should’ve meant. She said I would “just” have to do housekeeping and cooking and learning routes and studying. Sure. And of course, I should “just live”. Obviously, I asked how I would do that, and the reply was that I should solve my own problems. Well, I guess a better idea is to live as fully as can be. I started thinking of possible solutions to my problems – all unsuccessful – by 1998. I’ve long decided that if we find something that works, that’s great, but there is no pill for my problems and that means I’ll have to live with my situation as it is. That’s quite exactly what my mother was telling me to do, but we seem to have different definitions of what living with a situation is supposed to be: for me, it means finding and using (alternative) techniques, methods and strategies that enable me to live as fully as possible in situations that I may not be able to deal with (ie. most situations that involve other people or unclear expectations); for my mother, it seems to mean avoiding all difficult to deal with situations. I know that we should just agree to disagree, but I feel my attempts at “just living” are denied by these statemetns.

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If I Were a Medical Specialist…

Wanted to do some meme, but couldn’t find any interesting Wednesday memes. So I decided for this one. Whaha! It’s cool, and of course, it’s true, huh?

The medical specialty for you is…. Psychiatry

Psychiatry is the best of all specialties. As a psychiatrist, people
may claim that you went into the field because you yourself are crazy. But only you know the truth, which is that you are crazy. Enjoy the ride. What Medical Specialty Is For You?

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Had the Mental Health Discussion Today

Had the mental health appointment today, cause last week that psychiatrist the other folk wanted me to see was called out of office cause of an emergency. We only found out upon arrival cause they supposedly had no phone number in my file. How come they do have a file – and how many files do I have at various agencies by now? – but not a phone number? It obviously was on the questionnaire.

This other folk was a man, but he wasn’t old enough (or didn’t sound like he was) to fulfill the grey old man stereotype either. Hmmm, time to readjust my prejudices? He did fulfill the “people who ask a lot of expensive questions that your wife asks for free” stereotype, at least in the second half of the discussion – at first, it was only the other woman asking questions. I can’t remember all that we discussed. If I’m correct, it started out about the December 29 / January 3 example and how that’d gone out of hand. I don’t remember, but highlighted the interconnectedness between freaking out and not understanding / feeling confused / whatever – an interconnectedness that may be interpreted both ways, leading to completely different reactions. Then it went on about how the staff reacted to my not understanding, as in saying that they don’t know how to clarify either (or rather, as in saying I need so much clarity or even saying that I do understand). We also got into the fact that so far it’s not gone out of hand so much again. The woman presumed a qualitative difference and asked me why it’d gone better now. I know the difference is quantitative: I still freak out, but not as seriously as on December 29, and it’s not at all uncommon for that not to happen for one or two months.

Somewhere, it got to go about the situation with my parents and how I felt about their reactions. The folk had namely read some stuff from my “care plan” and all where I write about the high expectations and the school for the blind (too good for low-level high school vs. too bad for regular ed) debate. She also knew what I told her last time about how I felt about graduating high school. She asked me if I felt angry with my parents for their expectations. I explained that I used to have this feeling, like last year, but that it was less significant now, and that what I was most angry about, was the fact that they continued holding these expectations for me after graduating from high school, while they knew that high school wasn’t at all nice. She also asked me about how my parents approached the situation now and I honestly answered that I felt they were leaving it up to me, but I couldn’t explain any further. The folk (the woman from the other appointments, the other jumped in later) then got to ask me whether I myself wanted to go to university, live independently and all. That is a more difficult question than it may seem. I want to, in that everyone (or most people) obviously want to be as independent as possible, but I do have some feeling as if I’m just expected to achieve it without knowing how to. I explained the first part like this, but don’t remember if and how I explained the second part. I had a discussion about this topic with Arda today, because we had a few staff from a Philadelphia living facility in another city visiting us yesterday. These people want to set up a training home, too, and were asking Arda for advice. I attended the discussion by chance and therefore Arda used me as an example repeatedly. The thing that stung me in her statements, was the certainty with which she defined my outcome as being living on my own and going to university with some housekeeping assistance (Arda defined that about three hours a week would suffice, which I think she’s right about). You see, it is my hope to be as independent as possible – that’s why I sometimes defy the housekeeping assistance thing -, but if we put that bar of expectations on the stars of university and living on your own and just hope that I’ll reach for the stars, it is quite likely not going to work out and what will happen then? I was kind of afraid, given Arda’s absoluteness, that she’d either kick me out (well, its diplomatic equivalent) cause of a lack of motivation or just wait till the summer and kick me out then to see that I rub along in Nijmegen or wherever. We agree that I’m going to be out of here by the summer of 2007, so how are we going to work towards that? I chose to do more cooking (I myself took the initiative) cause I realized that I would have to be doing that once I’m out of here, too. It’s far from easy, but it is doable, and no-one said that life’s easy. There are a lot of things I don’t know how to progress in. Handling mail (that is often really difficult or impossible to scan) is the most practical one. Arda concluded I would be getting asistance for reading my mail as if that was the most obvious thing in the world – it apparently is among her “what blind people can and can’t do” list that she knows I’ve been defying forever. Oh. Never thought about that. Other things are even more unclear. Arda reassured me that they aren’t just going to kick me out and make me just see how I cope – even though all of our goal is that I’ll live independently, we will be planning for that. The outcome might not be what we expect, but we will be keeping that goal of having me live independently and go to university.

Anyway, back to the mental health appointment. I don’t remember exactly how the whole discussion went, cause the psychiatrist took over sometime. Somewhere, we got into a discussion of my behaviour in other situations than with the staff. That’s maybe how we got to the parents discussion, cause I made some not quite clear statements about how that went with my parents (cause they keep saying I didn’t behave all that badly even though I remember otherwise). In any case, we got into a discussion about school. The psychiatrist asked whether I was going to study psychology at university, too (of course not), what I was going to study (said I didn’t know, probably humanities – cause linguistics is the only programme still on my list) and whether I’d done psychology now in an attempt to understand myself or something (hell, no!). Then we got into the social part of school. I explained that I’ve not freaked out at school till January 15, but my fellow students did have some feeling as though they were taking responsibility for me in the social sense. I didn’t realize this till the discussion with Arda/Elma/Dannie, of course, and till now don’t have it quite clear what exactly they meant. I don’t remember how I got to mention that. Maybe cause the psychiatrist somewhere made a remark about friends re living independently and I admitted that I haven’t had any but I was sort of used to it even though I kept trying. In any case, that got us into a discussion on insight in social situations that sounded remarkably similar to the discussion on “imagining how others feel” from last time, only it was clearer what was meant, cause now the situation was one in which I judged the situation differently from others. I explained about my difficulties in understanding expected behaviour. As we discussed this issue some further and the psychiatrist summarized, it was clear that it reflected mostly my point of view and I’d really hardly used other people’s paradigms. I don’t know if that’s an advantage or a disadvantage.

The “what do you want from mental health” question came back. It’s not really that I don’t want to answer, but that I’m really not sure. You see, I’ve had this problem forever and have been told that no-one knows anything about it too many times to count, so I find it kind of hard to clarify why I’m coming there except for it being the umpteenth step in the journey with my behaviour, that so far has always ended in “we don’t know”. I tried to explain some of this, but couldn’t. It got down to them having their admission team discussion sometime and the woman calling me on either Monday morning or Tuesday to make a new appointment to discuss things.

As I went home, Evert wanted me to explain why I went to mental health. I didn’t know what he meant: what my problem is or why I went for this appointment. I explained about this appointment being the third discussion in the admission process (and why they needed three discussions) and the folks having their admission team thingy and all. I can’t imagine Evert doesn’t know the reasons for my going there, but if that was what he wanted to know, he didn’t ask (or I didn’t get it).

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