Astrid’s Journal

Called university on Monday and now I’m feeling so strange: I got an appointment with a student counsellor for next Wednesday at 2:00 PM and I have not prepared much. I did that list of needed accommodations, of course, but it’s very vague and I guess the student counsellor will say that it’s something for the director of studies to arrange. I wanted this appointment cause I can imagine some things will be different at university than they were in high school - partly cause university is different and partly cause I won’t have my system manager father and full-time book scanner (sort of) mother around -, and I want to know that if there are things I’ll still need to make sure I get, I can apply for them in time. I have some things listed, like the accfessibility of the computer system and the way I’ll need to get my books, but I cannot be too specific yet cause I think that by February 1, no-one will know exactly what the year is going to be like.

Another thing is how to get to Nijmegen. I was like: well, I’ll just look up the route at a travel planning website. However, I never travelled this route alone before. Yet I hate the principle that you’ll have to learn every single route before you can travel it alone safely. That is not to say I can do it without ever asking for assistance - I’ll get travel assistance on the railroad system and once I’ve arrived in Nijmegen, I’ll have to ask someone to whow me the correct bus cause the station is dynamic (that means that buses don’t stop at the same location everytime) and I’ll have to ask for directions to the university. Renee was very skeptical. At one point I made the comment that she could also travel in unfamiliar areas. “Do you know the difference between me and you?” Sure I do: she can read street signs and house numbers and I cannot and she has access to a map and I don’t, but I can ask for directions. I have no problem asking for assistance on things I don’t know alternaiive techniques for - and don’t know anyone who does or has ever told me he knows of any -, but I do have a problem with the idea that unless you’ve been taught a route, you cannot travel it without someone accompanying you on the journey. That is in effect saying that cause you’re unable to read street signs and house numbers and cannot access a map (most times), means you are limited to familiar areas to travel in. And I do know blind people younger than I am who travel in unfamiliar areas. And no, this is not just along the liens of: “A blind person should be alle to do this so I should somehow manage to achieve it.” That is part of the reasoning, but I also feel I have the alternative techniques to use public transit and following directions and I have no problem asking for these directions. In other words, I feel that if my alternative techniques are inadequete for travelling to Nijmegen on my own, then either they’re not developed enough - which I don’t feel cause I managed to go to Grandma on my own, too - or there are other alternative techniques I haven’t thought about that blind people use to accomplish that last part of the journey, which I didn’t practise on my travel to Grandma: going from public transportation to your final destination by foot.

But in some ways I realize that I’m making something out of this journey that it isn’t: an experiment to see whether I’m what part of me sees as a successful blind person. I hope that it’s going to go alright, and, cause I planned 2 1/2 hours for the journey of which only one hour is consumed
by the travel by train, I think it will, but I realize that if it won’t, that isn’t just a failing “mission successful blind person” but also a major problem with the university. If the travelling, or the discussion, or both, is/are going to go wrong, then I’ll be in great trouble, and it doesn’t just extend to the fact that I will feel as if I’ve failed - I would’ve failed, whether this aspiration is appropriate for me or not.

What I’ve been noticing lately, is that people with disabilities who get punished by the justice system, are used as the “poster children” for those advocating against these judicial actions. An example is the execution of a blind, wheelchair-using senior in California. I don’t care whether the man is blind or uses a wheelchair or how old he is, I care that I oppose the death penalty. I feel that focusing on the disabilities, diverts attention from the real issue: that the death penalty is morally wrong. It’s a good thing, of course, to have people stand up against this partcular execution, but I’d be happy if they stood up against executions in general, cause it is not that he’s poorer for being executed cause he’s blind or uses a wheelchair or is elderly. There’s no reason to say that’d make his case any worse, if the disabilities didn’t prevent him from being responsible for his crime, which I don’t think blindness or a mobility impairment do. I mean, executing the mentally retarded would be a moral problem even if the death penalty weren’t wrong, cause one could doubt whether such a person can be held accountable for his actions. However, even if the man had had his blindness and physical disability at the moment of the crime, that wouldn’t have meant he shouldn’t be held responsible.

It is about the same as anti-euthanasia people using analogies with Nazis to get people to oppose the Dutch legislation: if you don’t feel that it matters whether there used to be a dictatorial government having an euthanasia programme that some compare to this law, the statement has no merit. I mean, whether our country’s laws resemble the Nazis’, or whether there even were Nazis to have an euthanasia programme (which I don’t doubt, just like I don’t doubt that the man being executed was disabled), doesn’s change the moral rightness or wrongness of the Dutch laws. I always criticize people, even on my own side, for comparing the policies to the Nazis’, cause they all know (or should know) that there’s a difference between our laws and the Nazis’, but that doesn’t alter the moral wrongness of our euthanasia legislation, just like whether disabled people, who can be held accountable for their crimes are being executed or not, doesn’t change the fact that the death penalty is an inconsistent, inhumane and ineffective way of punishing.

I started at the training home on Wednesday. My first few days weren’t all that good, but I realize that the same was happening at rehab: I had to be introduced to the setting extensively, wouldn’t do much for myself yet - even things I could normally do, cause the setting was so different -, had question after question, couldn’t go anywhere on my own, and generally appeared to be the unexperienced newbie. The reason I find it more difficult now, is that there is a greater gap between what I can do in familiar areas and what I can do when the setting is unfamiliar. Eg. I could’ve done my own shopping from day one on, had I known the way to the supermarket, while before going to rehab I didn’t do any independent shopping even in my own neighbourhood supermarket, so it didn’t matter that I couldn’t do shopping at rehab, cause I couldn’t do it at home either. And the reason I couldn’t go to my parents’ home by bus today was cause I didn’t know the way to the bus stop yet cause of having practised only once, while it was no surprise that I couldn’t go to rehab by bus, cause I couldn’t ride a bus anyway. I’m sure the same having to get used to the setting will happen in Nijmegen, yet unconsciously I apparently thought I could do the same here as I could at home.

Regarding the way the training is set up, I have my doubts, but plan to discuss them with my coach shortly. For example, on several occasions I was told that if I couldn’t do something yet, I’d not have to do it cause they didn’t think the staff could help me with the activity at that moment. My natural response was to say I could do the stated activity - after all, I have a rough idea of how to do almost everything, even stuff I didn’t do at rehab -, and just try, knowing that the one positive difference between the training home staff and my parents is, that the training home staff will let me do something and check on it later, while my parents will take the thing out of my hand as soon as they see a mistake. Still, it makes me wonder: if it’s about getting help or doing stuff on your own, then what does one do with things one truly cannot do independently yet?

Another drawback is the fact that most other clients have some degree of intellectual impairment, and the subsequent attitude the staff have developed towards me. It’s not that they have no experience with blind people of average intelligence - it used to be what the very training home was set up for -, or that they have a bad attitude about independence - they don’t, cause it’s the ultimate goal -, but the way I’m approached based on my intelligence. I’ve heard the statement “She’s so smart” made about me more often than I like to. I could interpret it positively of course - in that the folks don’t deny or underestimate my (intellectual) ability, like the ones on special ed used to do -, but it makes me feel like, for Heaven’s sake, I’m more than my intelligence, and I do have my difficulties. Yesterday morning, a staff member made this comment that I picked up things so quickly that I’d been finished within a week. That wasn’t meant literally, of course, but it stung, cause just cause I can orient to the garden within a few minutes cause I can oversee it somewhat and cause I memorize a phone number after having been told only once, doesn’t mean I learn everything that quickly.

Both Mum and Dad think it’s okay to take the washcloth etc. from them till I can buy it for myself. I commented to Mum that I would ask Dad cause Dad’s more strict on this. Mentioned the train ticket thing. Dad had just come in and made some comment about not going to extremes. Not going to extremes in what goods/money/services I demand from my parents or not going to extremes in my thinking of what they’ll think of such demands? I feel it’s irrational to fuss about this issue like I did yesterday, but I don’t think my idea that my parents may not agree to lend me the things is irrational. After all, Dad said he had washclothes enough. They had money enough to lend me some for the train ticket, too, and I don’t really understand the rationale behind the difference: after all, neither thing was about not having money at all - not having money doesn’t exist for me. The only difference is that I do currently have the money to buy those stupid things, but not the time. Or maybe I do have the time. It has to do with the comparison with Sigrid, who almost always pays her travel tickets and who doesn’t need to buy washcloth or towels - but would if she had to, so what? Don’t know. Something with that it’s less directly a monetary thing, ie. not at all? Could be.

Anyway, here are the other things I’ll have to buy:

1. Lamp;
2. Chair (Mum said I can have one of theirs, but don’t want to cause of the money thing);
3. Several pairs of trousers (many are pretty old);
4. Scissors (I think);
5. Electric kettle or singing teakettle (maybe);
6. Something else I can’t remember.

Oh man, I forgot my “to do list” for today, but at least tomorrow I’ll have to go to the post office with a couple of library books. They’re probably way overdue and I don’t fancy going to carry them to the office at all, but will have to anyway otherwise I’m likely going to get in trouble. Sigrid said: “But can’t Dad put them in the car?” I’d done a little thinking to not be egocentric/egoistic/whatever and realized that he’d have to take my things to the training home, so I couldn’t expect him to do that as well. He agreed. Feel like not doing the whole thing, but it feels like both making troouble with the library and being mean to Dad cause not doing it would equal thinking the thing isn’t possible without Dad taking them by car. Also have to send the library a message telling them my new address. Also still have to apply for student financial aid. Well, can’t do that now cause I don’t remember my new postal code. Also have to pay a bill for the sunglasses. Stupid me forgot once again. Man, hope Mum or Dad is willing to help me tomorrow. Don’t have a scanner. Is that another thing I’ll have to buy? Dad says he has three unused ones, but well, he has a digital camera that he doesn’t use often, too, and Sigrid is still saving money to buy her own. Man, I have no understandig of money and its social aspects. Have no understanding of social aspects of anything. Man, did I ever truly believe I could get over my social ineptness? Yes, I did. And do I believe now that I’ll ever get over my irrationally connecting everything to everything else? Judging from how disorganized my writing is getting, I don’t.

I’m at Grandma Janneke’s in Zeist. Arrived at Amersfoort station yesterday afternoon at around 2:00 PM. Went to have lunch in a nice coffee house near the station with Grandma. After that, we had to wait for quite a while for the bus to come.

Grandma lives in a senior group home, so this morning we had coffee in the general apartment. I got to meet several of Grandma’s neighbours, some of whom I already knew and some who were new - well, relatively, since I’ve not been here in about two years. The group will have its tenth anniversary this year, so its celebration was discussed. Grandma was the first resident, cause she’d come up with the idea of this home - we still laugh at the anecdote of the local government person who didn’t like the idea at all.

I’ll be home again tomorrow. It makes me feel overwhelmed when I think of what all I’ll have to do then. Travel home by train. Feel scared to ask Dad to pick me up at Apeldoorn station- probably egoistic. Besides, I don’t guess he’ll have the time to, cause I’m most likely going to get home in the afternoon and he has to work. So that means travelling home by bus. Have to go to the supermarket, cause I need to buy washcloths and towels. Things I never bought for myself and always assumed were there. They are, but it’s probably egoistic to take some to the training home with me, even if it’s only for the few days till I have time to go to the supermarket or wherever they sell these things. Mum found it strange I’d bought my own toothpaste and shampoo, especially cause my parents had jsut bought four bottles of shampoo cause they were extra cheap. Who talked about not paying my own things? Now you’ll get me paying them. Only I hate the time being consumed on going to wherever they sell washcloth and towels - I don’t even know what kind of shop to go for those things. Feel rather stupid about that. Makes me feel as if it’s a terrible flaw in my development, or whatever. Sigrid probably knows - she knows everything and can do everything (the old “everyone is good at everything except for me” feeling is back, stupidly irrational as I am) -, but she’ll have class till 4:30. Hmm, maybe I should dig into the little bit of creativity that I have in that mind of mine - Grandma was reading an advertisement for washcloth at some shop called Wibra, and while we don’t have one, we do have a similar shop in our shopping centre, so I guess that one seels these things, too. Hoping I’ll be home before that damned shop closes. Oh, am I ever stupid, fussing over that damn linen cause I consider (or think I should consider, or wish I did consider, or think everyone considers) it egoistic to ask my parents for some of these stupid things to take to the training home with me until I can get to that damned shop. I don’t think I truly consider it egoistic. What do I consider, yself? I have no f*cking idea, and it’s been something I’ve been thinking about ever since last Friday. I keep hearing from my parents about social conventions. Stuff I guess most people feel, or pick up incidentally from friends I don’t have. I remember my father in July, when an acquaintance visited me, telling me that I should’ve given her a bus ticket home. It’s one of those situations that make me think of the difference between egoism and egocentrism. The latter I admit to being about the personification of, but the former connotes to me not caring about other people, or only caring about them when you have everything you want. Well, no, cause if it were the latter, now I could just as well have started caring about people when I went on disability and had enough money to buy that stupid bus ticket for Vera. Oh, maybe not right then, cause there was a time when I didn’t realize that, because I made more money than Sigrid, it was logical that I, for instance, pay travel expenses when we’d visit someplace together. Arguments people used to build the fact that I should buy travel tickets on, were, by the way, never about income, but about Sigrid being my guide and if she didn’t go, my having to pay just as much, cause guides can travel for free. Such an argument makes me even more defiant, even though they weren’t - Sigrid paid travel expenses and probably my ticket as well (cause I at least didn’t) when
she’d asked me to go to Boris’ concert cause she had to have an older person go along with her. The reason these arguments made me want to defy even more, was, of course, that it reminded me of having to make up for my disability, ie. my inability to travel unassisted. Should I go into a discussion of the illogicality of this equation? I don’t want to waste my time and computer space on it.

What, however, is the issue about the buying a ticket for Vera, was not that I felt I didn’t want to give her the moeny for it, or that I didn’t want to care for her, or any other “your interests don’t matter” argument. The reason was that I simply hadn’t thought about it. That is what I consider egocentrism: when it doesn’t come to mind to think that the other person might be having a problem getting a travel ticket. Egoism, I think, is when Vera had asked me for a ticket and I wouldn’t give her one.

I also feel a form of not being creative, in a sense of not being able to think of what is considered normal, fits in here, but I don’t know exactly where. That’s what I meant with the statements about having to consider or feeling everyone considers asking to borrow linen for a few days egoistic: I just don’t know anything about this stuff. I wonder what would be more egoistic: asking my parents to borrow the things till I have the time to buy them myself, or asking someone else, who may be going to the shopping centre, to buy the things from my money. The one is asking for goods, the other for services. Man, if I even rememberd all the other things I have at my current home that I won’t have at the training home unless I take my parents’, which was considered alright when I went for rehab, but I want to see this move as a form of moving out, and, even though my parents don’t think of it that way, I want them to.

Why that? Why do I feel like this is about moving out. It has to do with what’s happened to me over the past few weeks. This not wanting to have my parents involved in everything anymore. I decided purposefully not to invite them to the admission interview at the training home. On the other hand, I felt obligated to invivte my father to the final discussion at rehab last June. It had a positive effect, cause a lot of what I’d been telling about everyone at rehab during that entire four days, was about what I assumed my parents expected, and most of it appeared to be wrong. Furthermore, my parents had, I felt, to agree with my going to rehab. I don’t really give a damn what my parents think of the training home or its staff, whom they by the way don’t even know yet. In some ways, over the past couple of weeks, I’ve been wanting to have nothing to do with them
anymore, to do everything myself and not to even let them know how I’m doing. I think this is part of adolsecent development. There’s a term for it, but I don’t even remember its Dutch word, let alone the English equivalent.

With what’s been happening over the past few weeks, I feel an inclination not to go home for the week-ends, no matter how boring it’ll be at the training home without friends to visit. Dad made a comment a while back about my spilling chocolate spread all over the kitchen. He said I wasn’t allowed to eat chocolate spread anymore - they cannot control what I eat, even in their own home. I replied that in two weeks they wouldn’t be bothered by it anymore. “Then we’ll be bothered during the week-ends,” he said. Even though, when Sigrid talks about wanting to move out, she talks about moving her entire room, including her bed and all that, while I will buy a new bed once going to Nijmegen (we’ll have beds at the training home), I currently feel as if going home for the week-ends is an obligation, and even some societal obligation, cause I can’t imagine my parents like me home each week-end.

But I was talking about stuff being normal. A lot of what I do insofar as caring for others goes, is out of knowledge that it’s normal. Not that I don’t feel bad when I don’t do it - the feeling about buying my own washcloth is very real -, but it’s more about “breaking the rules” than about sincerely not caring for others. That is not to say I don’t care about others - I genuinely do -, but well… I don’t know how to explain and even this writing makes me feel as if I’ve read this before, written to describe a certain aspect of some psychiatric label I once suspected, but I can’t remember which. Was it something about not being able to feel, at the deep emotional level, that you love someone? If it was that, I don’t think it applies to me, at least not if the inability to feel love is meant. Maybe the inability to identify it, or even the inability to express it in something that doesn’t feel like pretence. That’s probably the most correct description of how this whole buying travel tickets or washcloth, being egoistic, the stuff about birthday presents, etc. is all connected: I must admit here to having pretended, last Saturday, when buying my father his birthday gift. Pretended, in the sense that I was applying my rules about what would communicate that I cared about and loved Dad: buying him presents he liked, spending enough moeny, baking apple cake on Sunday morning that ended up having failed if Sigrid hadn’t stepped in? Dad’d told me that he wanted a Michelin road map of central Netherlands and a certain type of screwdriver. Mum’d told me he wanted a certain book. I wanted to buy two presents - I always buy multiple gifts, a “rule” adopted from Sigrid -, but couldn’t decide which. To make things worse, they didn’t have the correct map - only northern and southern Netherlands, which together make up the whole country cause Michelin doesn’t make a special map of the central region anymore. I was convinced Dad’d told me he wanted a Michelin map, so I found it was easy: I’d buy both so he would have the country complete. Sigrid was convinced Dad didn’t want this type of maps and felt real bad about perhaps buying the wrong present. I did, too, but I was convinced he’d said this type of map. We got into an argument and it all made me feel as if I had no idea of what importance buying exactly what he’d asked for, had, and it also made me feel that I didn’t know Dad well enough cause he’d told me he wanted this, but Sigrid was convinced he couldn’t want that. Eventually we ended up buying as I’d said and I told Sigrid I’d take the blame if it were an inappropriate gift. For some reason, I didn’t feel really guilty or whatever feeling it was that Sigrid had at all - I felt it was stupid for me to break the rule by buying a bad present, but soothed my mind with the idea that first Dad had told me he wanted this type of map and second, I had the image of buying inappropriate presents anyway, judging from what they’d told me that evening. Then I wanted to buy the book. I found that buying exactly what Dad had asked, would only highlight the fact that I didn’t know him at all and wasn’t creative either. I don’t know if it’s true, but anyway. But what about the screwdriver? We, by the way, had now only bought the book cause the argument about whether the gift was the correct one had led us to leave the shop we’d look at the screwdriver, too. The shop that sells this type of screwdrivers only had them in sets, and I didn’t want to buy that cause maybe Dad had all the others. When we left the shop, Sigrid told me he didn’t, and I felt maybe it would’ve been good to buy the screwdrivers. Buying three gifts, I thought, would only come across as pretence. It’s not unusual for me to buy three gifts, but given the discussion we’d had, it would be kind of wanting to follow the rules. Never mind that I was doing that anyway. I hope Dad isn’t going to find out by reading this stuff, cause he may think I don’t sincerely care about or love him, like people who feel obligated to come to a birthday party sometimes do: buy some goodies cause they have to buy them - not cause they like the one who’s having his birthday. And I do! Eventually, I ended up buying the book and the maps, calculating silently how much I’d spent on them. Sigrid knew, of course, cause she’d read me the prices, and she herself calculated loudly, so we know of each other how much we spent. I don’t think it really matters, and neither does it, in my view, matter that you calculate that you can spend so much on presents cause of some reason, as Sigrid now openly did. But I have no idea what does matter, and I don’t understand why people actually care. I mean, there are pretenders enough - the folks who pretend they care about you by giving you what you wanted - and there appears to be at least one person who sincerely cares, but has no idea how to show it - and if someone were to tell me what is the key to making clear that I care about my parents, it might even feel like following a rule if I did as I was told. This does not apply, of course, to the very emotional types of caring that I apparently cannot show either. If I could change my behaviour so that no tantrums or fights would occur anymore - something I’m convinced would send a positive message -, I wouldn’t feel like it was following a rule, except if it were. And I’m even afraid it would be, cause most attempts at changing my behaviour have been about educating myself about the rules of good behaviour. I didn’t make up that statement myself - I got it from an autistic -, but the feeling is sincere. Unfortunately, I never found a rule of behaviour that is going to increase my frustration tolerance. It’s in fact a rule of its own: you ought to have high frustration tolerance, or, applied more practically: when frustrating things happen, you ought to tolerate them. Duh!

I feel confused once again. Any discussion on money or financial situations these days turns into an “Astrid is rich only she’s too egoistic to admit” statement by my parents and Sigrid. That is not the worst - I know I have quite much money cause of being on disability and I don’t feel it’s too bad that people think I shouldn’t care about the money spent on healthcare insurance (which is more expensive than last year due to a new system) -, and I don’t even care that people say I’m avid in a way of not wanting to spend money, but I do care when it turns into a statement as if I don’t care about other people, which is simply not true. I mean, I don’t care that people criticize me for fussing about money while I have several thousands of euros on my savings account, but I do care when people get like: “Sigrid always pays her travel expenses,” when I ask Mum if I can borrow a little money from her to buy a train ticket to Grandma next Sunday cause it takes several days for me to access my savings account (they’ll wait two days, not counting week-end days, to transfer money from the savings account to the check account). I mean, I admit to having used to wanting more money from my parents than my sister before I was on disability - I remember a discussion when I was sixteen over pocket money where I got mad cause Sigrid got more money than I’d gotten at her age -, but now I *always* pay my travel expenses except ParaTransit, which I’d proposed to Dad that I would pay already months ago only he wanted me to arrange it, and since I hate arranging stuff, *I* didn’t want to make the arrangements. But I didn’t want to make arrangements for getting student financial aid when I was in high school, either, while that eventually got me 90 euros a month. It’s to do nothing with money!

Sigrid criticized me for having calculated, eventually, that I could most likely pay for that travelling to Grandma: she said she’d calculated for a year and never nagged about it. First, that isn’t true - she tells me each week when we go to the mall how much she’s calculated she can and can’t spend -, and second: cause I used to be so super rich (relatively) before having to pay health insurance and rehab and such, I never calculated what I could and couldn’t spend cause I thought I’d have enough money anyway. Mum and Dad laughed at that logic, I don’t know why. Isn’t it just admitting what you just criticized me for? Mum and Dad didn’t start keeping a checkbook till they had major money problems, and I start calculating stuff when I have a minor money problem, so what? But calculating is wrong, saving is wrong. Spending is great, and especially on others. That’s another thing: Dad made a comment about the amount of money I spend on birthday presents. He’ll be having his birthday next Sunday and commented that most likely he’d get a pen from me. But a short while later birthday presents suddenly wern’t about money at all, cause he didn’t like my having any rules (formerly that birthday presents shouldn’t be too expensive, now that they shouldn’t be too cheap) about money and birthday presents. The important thing was that I bought them something they liked. Duh! I never bought them any things they didn’t like, I hoped, at least not intentionally, after the long-standing tradition of buying my sister a pack of felt-tip pens for 2.95 euros (very cheap) over five years ago. Sigrid commented on my asking her what my parents wanted for their birthdays and apparently considered it a personal flaw that I didn’t know what books my mother didn’t already have, what types of decorations she liked and didn’t like, what gardening magazine she subscribed to so I wouldn’t have to buy her one, etc. And as for Dad: people often hardly know what he wants, my sister included. “I have known more presents for him than you,” Sigrid commented. It had to do something with creativity and going along with people. Apparently I’m not creative and don’t get along with my parents. For some reason, Dad mentioned Autism again and I got totally pissed-off, saying that he’d always mention it except when he thought I’d take it seriously, cause then I’m a hypochondriac. Sigrid asked what Autism was. “Isn’t that a new disease that really doesn’t exist?” she asked. It’s been known since 1943 and it’s damn real! “Isn’t that that you can’t handle change?” she asked again. “It’s about being contact disordered,” Mum said. I don’t care what it is, they’ll never take me seriously anyway. They’ll keep using that stupid disorder against me until I get an obsession with it cause of believing I have it - then they’ll have a new disorder to stick on me. I once thought about handing them a list of 200+ abbreviations of psychiatirc disorders (or maybe I could just make them up) for my father to throw at me, cause he has no idea what he’s talking about anyway and he doesn’t care either.

They got into some more nagging about the training home and the fellow residents not wanting me etc. Well, I’m happy they didn’t have to choose. Mum said that wasn’t true cause the first impression was always good but then after a while it went bad. I know that partly she’s right, only my first impression isn’t as good as the impressions most people make. Maybe I’m just damn antisocial or something. Do I care? Yes, in fact I do, and that’s what’s so stupid: I know the teenagers whose parents hang around ConductDisorders.com are as egoistic and unlovable and abusive and whatever, only they don’t care. It, as always, after some “normal” talk in between, in my father’s comments about me probably being afraid to turn 21 (after him not remembering how old he’s going to be and my making a comment about becoming 20) cause then they could throw me out, and that not going to happen. I must be honest here: in a way I am happy that I’m not going to be with my parents 24/7 anymore from next Wednesday on, cause, even though I suppose it’s something about me, I sometimes feel I just can’t handle it anymore. Adolescence? Could be, only then I wonder desperately whan that is going to finally end.

I had a very confusing discussion with Mum yesterday. I can’t remember how it all went. It started out about college, the training home, rehab and such and went all pretty well. For some reason, then, we got to speak of special education and what they’d done wrong. Stuff about not keeping their promises. I agreed, but on a totally different part than Mum: Mum kept nagging that they wouldn’t let me do geography in third grade (it’s normal to start in third grade) cause the other kids weren’t there yet. What I meant was all the recommendations they’d made about getting my difficulties addressed. I wrote about that a few days ago: wondering whether it was about special ed not keeping their promises or about my parents not agreeing. I still stick with the idea that it’s a little of both, even though Mum wanted to blame special ed, cause she said stuff like: “We always went along with their recommendations, only as soon as we saw that you were forced to do ___ we opted out of it.” Yes, that I was forced to do ___. Pray, for instance, cause the school I attended at the time was Christian and my parents are atheists. I remember not liking being forced to pray, but I just don’t understand why it’s an issue to get someone out of an otherwise good activity for. Not that it “helped”, so that particular activity (an after-school club) bears no relation to the addressing difficulties thing.

My Mum kept, as always, emphasizing academics throughout the discussion, and I cannot say she was wrong to do so back in 1997/1998: I think my memory and its interpretation are selective, ie. in such a way that it might’ve gotten me in a better place on subjects I find important in 2006. But who says that I wouldn’t have found academics far more important than non-academics if I were forced to be at a low level school cause of those other issues? I mean, I got what I wanted as far as academics are concerned, and now I’m finding myself struggling with the fact that my difficulties were ignored all the time. Intelligence and social/emotional/behaviour difficulties simply aren’t compatible if you’re also blind.

I thought, however, incorrectly, that Mum would understand my situation at the moment. She didn’t. She kept saying that I had the solution to my behaviour stuff. If only I did! She said that no-one had ever known what to do about my issues, that she’d done it right away if anyone had known anything. Well, she lied cause she consciously rejected any opinions except on whether I could go to normal school or not, and even now she said “That was stupid of the remedial educationalist,” commenting on the 1998 eval, while she’s known and always respected that person up till her conclusion that I was not ready for regular education cause of, among other things, my social/emotiona/behaviour stuff, and that this should be addressed. It never was. Now I have no idea how anyone was supposed to address this stuff - the folk didn’t tell us -, but nothing happened, and I suspect that partly my parents didn’t want anyone to get involved in this matter. Now Mum said I had the solution. I tried to make clear that if it was just a button to be turned around, realizing that this behaviour was inappropriate and wouldn’t get me any desired result (if I’d ever acted this way on purpose, but I’m sure that unconsciously I could’ve thought it woud work), would’ve enabled me to stop, and over the years I’ve had many incidents that could’ve sent me both of these messages, and did, as far as I’m concerned - but maybe one cannot judge that oneself? Mum at once said that maybe it wasn’t so simple, then got into a pseudo-psychological blah-blah, asking me what I felt when I acted this way (well, what does one feel when one gets frustrated?), and then kept saying that she didn’t notice that I was getting over it. Neither do I, but does that mean I haven’t done my best? The worst sort of psychological ideology one can employ - and it seems to be my mother’s -, is that behaviour always has an underlying cause (maybe even something subconscious), only this cause can be determined by observing the behaviour carefully. It leads to such statements, once made by my parents, as: “Do you do it to take revenge for your birth?” Then please resort to pure behaviourism, saying it doesn’t matter what’s behind the behaviour, the important thing is that it changes.

Mum pretended that I was asking her for a solution to my behaviour. I didn’t, all I was asking her was to take it seriously and to quit pretending it wasn’t there. Cause I understand it if she doesn’t tell others about my problems and only pretends that it’s blindness combined with high intelligence that creates the trouble, but even to me she doesn’t take the stuff seriously - and neither does Dad, by the way. She got into stuff like if anyone had ever told her that this or that medication or this or that therapy would help, she’d tried it. She said that everyone had told her it’d go away. Well, no-one did: all they said that might be interpreted this way, was that I acted young emotionally, but if only that was their only observation! Well, I don’t know if there’s any “box” I’d fit in or anything to be done about my stuff, but Mum can’t help that: what she can help, is the fact that she keeps pretending that it’s my own *choice* to be troubled. We had a brief discussion on psych diagnoses this evening, wherein Sigrid kept insisting that disorders such as Autism and ADHD weren’t real, I first defended the existecne of such disorders and then ended the discussion with some joke I didn’t agree with about in twenty years half the population being in therapy and the other half being their therapists. Sigrid made some comment about people being able to use a label, by saying stuff like: “But I have ___.” Well, I agree that sometimes there’s over-use of labels, and a label is not what I’m looking for myself, but fact is that the situaiton doesn’t change with or without a label. If you were to tell all ADHD kids and their parents tomorrow that they didn’t have ADHD cause the disorder didn’t exist anymore, the kids’ attention deficits and hyperactivity wouldn’t go away. And that’s exactly the attitude I see in my parents: that ignoring my stuff would make it go away, as if it’s like the hystero-epilepsy invented in the 19th century. I admit that people, upon reading the DSM-IV, may look so creatively that they’d fit any disorder they wanted to fit, but incorrectly self-diagnosing a psych disorder is not the same as faking one. As I’ve always said and will keep on saying: my obsession with Asperger’s may’ve been wrong, I may not have Asperger’s, but that doesn’t mean that the grounds for believing I did, weren’t sincere.

I was just reading the Proactive Parents website, the homepage of two couples who both gave birth to a premature baby who now has considerable special needs. I was at first sort of angered by the undertone in the articles: even though the parents are aiming at getting services for their children which the NZ health system isn’t going to pay for, the underlying meaning seems to be that these children should actually not have lived. The parents, namely, keep highlighting that they were not given the choice of whether to have their kids resuscitated. Neither were my parents, to the extent that, when my father doubted my survival, a nurse bluntly informed him that he would simply lose his custody if he didn’t agree with my medical treatment. Did he ever truly disagree, beyond finding that the nurses were careless with my oxygen and other preventive care? My father is the most straightforward about his opinions on life with a disabled family member - at least, that’s to mean disabilities I don’t have. He says he wouldn’t raise a mentally retarded child, for instance. He is very honest that, in cases of euthanasia or not resuscitating on the family’s initiative, it’s the family’s, not the patient’s will, cause in such cases a patient has no will, and hence pitiful arguments along the lines of “He would never have wanted to live this way,” are invalid.

My parents in some ways don’t seem like the creators of the website, but in other ways, they do. I don’t think my parents contemplated not letting me live, but I do begin to see, over the last couple of months, how some of their reactions to me seem to reflect grief. I don’t think they’ll take it seriously, should they read this. They never do, cause saying that I suspect they’re grieving is making some vague psychological statement, and they don’t like psychological statements anyway. But I sincerely feel this way, and sometimes it frustrates me that my parents aren’t open about that: the messages get communicated anyway.

The website creators emphasize their frustration cause the children have invisible disabilities that clash with their being high-functioning. Their statements do sound as if they’re more reflecting their own views than their children’s, but I, being an intelligent person who’s continuously wondered whether she has some invisible disability for about eight years, can imagine that kids truly react this way. And at one point I found parents who reacted frustrated to their children’s challenging behaviours to be kind of poorly adjusted or something - my parents only shouted that I was making their lives miserable when we were having a fight, which I hence didn’t take too seriously -, but over the past year or so, it’s become more and more clear how my parents are affected by my special needs. They’re not blindness-related, I think, but that makes it even more incomprehensible. It used to be about blindness, back in the 1990s when we were fighting the educational system. Now, it seems to be some stuff that at once seems as if it’s something I willingly inflict upon them, but I don’t. Or maybe the objection I have to my parents admitting that they’re burdened by me and then naming behaviour problems, is rather that my behaviour problems have never been identified and the advice evaluators used to make was never followed up - either due to poor special education, due to my parents not caring, but most likely a combinastion of both. Still, then, why don’t my parents support me when I am wondering what’s wrong with me? In early 2004, they said I was a hypochondriac for suspecting Asperger’s, while half a year later, when reading an article on an increased rate of Autism in cities with a strong technology sector, my father commented on both I and another kid whose father works in the technology field having “some of those traits”. I don’t mean that I have AS (I don’t as far as I’m concerned) but that my parents only seem to want to see my trouble when they think I’m not going to take their statements seriously.

I sometimes wonder if my parents’ emphasis on my intelligence is some type of coping mechanism: I have all kinds of little or not so little quirks, but thank God, I’m not intellectually disabled. I value my intelligence, in that I wouldn’t want to lose it, but I don’t cherish it the way my parents do: I may be intelligent, but I also have difficulties that so far have not been identified and that people seem to want to deny, but that I’m not going to. That is not to say I intentionally act this way to get recognition or something, it’s just to say that I want people to be realistic. Do I care if it makes me like one of the kids on this webpage? Well, my parents have the views they have, no matter whether they make them explicit or not.

After having had my second request for membership - my first was in early 2004 and it was ignored - to the PREEMIE-CHILD list approved and receiving an E-mail from the moderator of a Dutch preemie list questioning my interest in it, I wonder why I actually want to join these lists and why some mods and members are happy about it and some wonder whether it’s the right list for me. It’s not quite “the right list”, of course, if my motive were to share with like-minded people - I am the first to admit that perspectives of former preemies and parents may differ quite a bit. However, particularly with PREEMIE-CHILD, I do feel that it has some usefulness to me. I am older than most children whose parents are on the list, but it’s essentially about the outcome of former preemies, which is a major interest of mine.

With other lists, I see parents appreciating my input, but mostly it seems as if the only reason they do is because I’m a former preemie, not necessarily because of the knowledge I have. I do have a fair bit of knowledge, but it’s solely informatively - I have no experiences similar to theirs - and I know former preemies whose knowledge of NICU issues is a lot better than mine. That’s the reason why I am not at all surprised that Sarah has been a member of PREEMIE-CHILD for quite a while. She is 33 and hence objectively and seemingly more mature than I am. Further, her knowledge of preemie issues is better than mine, or it at least seems as if it is. Maybe her devotion to parents is greater, cause if I ever were to set up or join a support list for a group of people I don’t strictly belong to (well, I did, with the Autism-Comorbidity group, but of course at the time I thought I belonged to it), it’s always partly out of a need or want for information on that topic. It’s the same with my membership of PREEMIE-CHILD: of course I’m there to support others and to share info, but I’m also participating cause of my own interest in preemie effects. Is that a bad thing? Are former preemies supposed to have all the answers, or, worse yet, not to need to be involved in the preemie community? It sometimes hardly seems to occur to anyone that people affected by a certain condition might be interested in their situation. I experience the same in the behaviourally disordered crowd: there is ConductDisorders.com, where I am as far as I’m concerned the only one who has behaviour trouble herself, and, upon joining, I got the same reactions I receive on preemie lists: that it’s so great to have someone “from the other side” around. Makes me feel is if I ought to have all the answers - and I do have a fair amount of knowledge on that topic, too - and now go ahead and support them. That’s not a feeling I’ve often had on preemie lists, even though back in the summer, when I had questions about hydrocephalus, I felt reluctant to ask them on a preemie list (I wasn’t on the HYCEPH-L list at the time) cause I thought I was supposed to have all the answers. Well, maybe it’s indeed just my thought, cause no-one actually ever told me I wqas supposed to have all the answers.

Then, about the ones not appreciating my hanging around on “their” forum. On some lists, I’ve noticed hostility between parents and affected adults. Like, I was once on an Autism related list, and there was a woman with Asperger’s Syndrome on it as well, who was often insulted for disagreeing with parents’ views. I sometimes also think my age and supposed or real immaturity contribute, and maybe that’s correct, cause, even though I want to be respected on lists, I do often have the image of a “list baby”. I’m the second youngest on the ROP-support list and the only member who’s younger rarely posts. But I’m the list baby on virtually all lists I’m on, not just parent support lists or lists specifically meant for adults (which oftentimes does not strictly mean 18+ but rather that it’s about adults as opposed to children). However, the age-bashing has decreased greatly over the past three years, and I think that’s more attributable to me than to the lists.

I’ve done a lot of reading on NICU ethics lately. As you might know, in the Netherlands preemies born before 25 weeks gestation are generally not resuscitated, cause neonatologists think that the risk of death or survival with severe handicaps is too great. The Rotterdam neonatologist in the article I mentioned on October 2, 2004 said that a brain scan at one day of age says a lot about how a child will do, hence allowing to select more objectively.

However, of course, then it would be withdrawing treatment rather than not initiating it in the first place, which feels more ethically incorrect. In my view, it isn’t more incorrect: what makes the difference is how vital an infant still is. If an infant is moribund in the delivery room and no resuscitation is done, that’s in my view similar to discontinuing ventilation in a moribund infant in the NICU. However, it does make a difference when a child is haemodynamically stable. And that is, of course, where the proposal to assess infants with an MRI, raises ethical concerns: are doctors going to kill an infant cause keeping them alive would be worse? It “feels” worse, and I oppose it anyway cause I don’t feel that disability makes for a good argument for killing, but factually it allows for a more objective selection of those that do well and those that don’t, then simply leaving all 24-weekers to die.

In my reading I also, of course, came across the endless lists of numbers. Long-term outcoems are not oftentimes used as an argument not to treat preemies, but I have very often seen assessments of infants in the NICU or upon discharge. What strikes me, is that there are always three problems documented: lung disease (either as in still needing oxygen after discharge or measured by the time spent on the vent), brain anomalies, and Retinopathy of Prematurity (sometimes, politically correctly or something, called “severe eye conditions”). I did not have lung disease after discharge from the hospital as far as I know, but when I was in the NICU, I had all three. Am I “severely handicapped”? I wouldn’t guess so. Of course I had my hurdles in the first year, and I don’t think my follow-up was quite cool, but I’m not “severely handicapped”. Oh sure, medically I am classified as “handicapped”, don’t know in what degree, but I wouldn’t hope I fall under the “What have we done?” crowd one neonatologist in the newspaper article - by chance, the one who used to treat me back in 1986 -, talked about.

I’m having major difficulties with this grey area between “success story” and “not worth living”, in which I consider myself belonging. I continuously see neonatologists and pediatricians get worried at the number of former preemies who have such and such a condition, that I myself did/do have. The Rotterdam neonatologist in the newspaper article commented about some kids having behaviour difficulties and that being annoying but no reason not to let them live. And my behaviour difficulties haven’t even been identified, even though I think a neonatologist would recognize them cause so did all remedial educationalists in my life, even though I have no diagnosis. And then, I’m also blind, which no-one considers to be a “severe handicap” but which is considered clinically a major disability. Yet I also fall under a category of supposed “success stories”: the Rotterdam neonatologist mentioned that some former preemies have an IQ over 100 and will later go to university. As a person with an IQ quite a bit above 100 and who plans to go to university by September, am I now considered a favourable outcome? It’s that same inevitable generalization made by all too many healthcare professionals: disabilities are incompatible with high intelligence. I sincerely consider myself affected by this mistake: in a highly intelligent person, blindness cannot be denied if the child has only 20/400 vision at best, but behaviour trouble can be ignored with ease. Do I have to, in order to be considered enough of a “success story” according to Dutch neonatological measures? I don’t know, but I cannot do so.