The first time that I remember someone addressing my behaviour problems to me was in April, 1996. I cannot remember what exactly was said – it was about the social worker who’d come to my house to talk with my parents. But I do remember the school psycholigist’s addressing my behaviour problems to me a few months later. (Apparently, the social worker had informed him about my situation.) He asked if I was often angry. I said “No,” and if the question was now asked to me, I’d still say “No.” He tried to speak “kid language”, of course, but frsutration is not the same as anger, and, while I do get frustrated easily, I found “being angry often” not an accurate description.
The first time I was aware that something wasn’t normal with me, was in late 1997. I think it had to do with my Mum’s telling me about the report and maybe having to be a boarder student at school. But mostly I blamed my mother – after all, she got angry when I was playing while she wanted me to do advanced school work or when I was upset cause my sister and her friend were teasing me. I now understand that I overreacted, and maybe even the teasing was a reaction to my poor behaviour, but at that time I viewed myself as a victim of my sister’s teasing and my mother’s anger. Till this day, I wonder if my mother’s extreme anger and her behaviour when she’s trying to correct me, are normal responses to the behaviour I exhibit or are also somewhat overreactive.
The first time I realized that it was *me* who had a behaviour problem, was in early 1998. I can remember the day my father read the 1998 report to me. I understand how accurate the statement that I had little self-critique was – I rationalized all my “wrong” behaviours. After the remedial educationalist’s conclusion that a normal school at this moment wouldn’t be an appropriate option, I was really upset and cried. I don’t think I understood the report fully – although my parents explained difficult terms to me -, but I knew that something was wrong – that I got frustrated too easily and that I exhibited “young” behaviour. At that time, I didn’t actively seek an explanation for my problems – I wanted to get over them. I identified for myself what were indicators of my wrong behaviours – the most important were the quarrels with my mother, that often got out-of-hand. I hoped that someday – maybe at the new school I was about to go to in 1998 -, I would encounter someone who was willing to understand my side of the issue: that it wasn’t just my wanting to be annoying, but that I had to get over this anyway. I don’t know why I so longed for someone to be supportive of me in this respect – weren’t my parents? At that time, my parents actively tried to get me to modify my behaviour. They punished me when I acted out, and they told me what I did wrong (I never liked and till this day don’t like their manner of doing so, ie. “people don’t likw you cause you are always reacting curtly/aggessively/whatever). I made up my own sort of “behaviour improvement plan”, which mostly involed keeping track of my tantrums and setting some sort of unpleasant consequence if I tantrummed. It didn’t work.
In 1998, I really saw myself as disordered in some way. On the news, I saw a couple of stories on developmentally disabled (mostly autistic) children, and I felt connected to them in an unusal way. Of course, I didn’t know what Autism was and I didn’t think that was what I had precisely, but there was this weird feeling that I had some developmental disorder resulting in social/emotional problems.
I went to the new school in 1998. There, my behaviour was less highlighted, but it was still the main theme my school folks emphasized. (My parents emphasized academics, of course.) I can still remember the day I met with Stef (who would be my special ed outreach folk when I went to normal school) a few days before a meeting with the normal school officials. All I remember him talking about, was my behaviour. Still, both my parents and the school folk did nothing relating to the topic besides telling me over and over again how important this was once I went to normal school. Did they really believe I’d change my behaviour if they kept telling me that I should? This school year was when I most longed for someone to understand my side of the problem: that I didn’t just want to be annoying, but that I genuinely *wanted* to change my behaviour.
The first time someone asked me about the why of my behaviour, was in the summer of 2000 while on a four-week summer camp in Russia. I’d acted out a number of times and often been very curt. To some situations, I knew an explanation – eg. I felt bad cause it came across to me as if the others saw me as a burden for my blindness -, but as it became more a generalized issue, I couldn’t explain much. All I knew was that I had had this behaviour for a long time – in my memory, since I was around seven. I kept a journal during summer camp, and much of it was about my behaviour problems. I tried to find out what had gone wrong with me, that I’d gotten to be so behaviourally disordered. When Dad mentioned the when I was seven theory to Mum, she replied: “Then you had to learn Braille.” I didn’t immediately see a connection, and during the 2000/2001 school year (eigth grade, when the topic was often addressed) I had all sorts of theories about why I behaved the way I did. In August, 2001, I made Mum’s theory my paradigm, but added other struggles that I’d had with blindness over the years. My curtness and behaviour issue became a problem of coping with my blindness. I had an explanation, wow!
Mum told me that when I was around seven I changed a lot. One evening in November, 2001, she said that I was previously such a happy, cheerful child. Sure my becoming aware of my blindness was in some way traumatic, and sure it may have increased my problem behaviour a lot, but I don’t believe that I was ever a normal child. I don’t think Mum believes it, either. I don’t remember thinking about this, and when I got to wonder if I had Asperger’s Syndrome in late 2002/early 2003, I didn’t consider the difference between acquiring my difficulties due and having been born with them. I became aware that there are clearly other problems than emotional difficulties contributing to my behaviour – my difficulty in understanding social situations, for example. I by the way was aware of that before I read it was a symptom of Asperger’s Syndrome – about one particular situation, I realized I didn’t know how to act, and over a while that followed, I encoutered numerous situations in which I simply didn’t know how to behave. Also, my getting frustrated very easily itself is a contributor to my behaviour problems. I exhibit a lot of behaviours that are manifestations of that – and that are also symptoms of ASDs, which contributed to my thinking I had an ASD.
I don’t have a theory about my behaviour problems now. I know that I likely always have had my behaviour problems to some extent. I tink that the core of it is the way I am. But sure often it gets increased when I have emotional problems. There have been times when I threw tantrums a lot less than at other times, but that didn’t change my problems with social interaction or my getting frustrated easily when I don’t understand something.
Sometimes, it’s very difficult not having an explanation, cause people can approach my problems the way they please. Sometimes, my parents and others will present my behaviour problems as not such a big deal – I’m just a little self-willed. At other times, however, they’ll treat them as if there’s no hope that I’ll ever improve in this way, and that I’ll just have to live with my problem behaviour. It upsets me, cause I recognize that I’m not just self-willed, I don’t want to give up on my behaviour ever mproving, but I don’t know how to change it.
Astrid
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. About fitness. Was cool. Then, I don’t know really what. About my trip to Amsterdam, Delft, Nijmegen, Leiden. Nijmegen. Radboud University’s there. When I would go to Amsterdam? I did, last year, but it wasn’t really interesting. I said Nijmegen was interesting and told about the American studies folk who told me there was a blind student there. We tried to find out who that student was, but I couldn’t remember his name; he wasn’t someone I knew. Then about talking to a girl who’s now studying Dutch in Nijmegen (Michelle, whom I know from the summer programme); I have some contact with her, but not much. I don’t know how exactly we got to speak about it, but then we got to speak about my feelings about going to university. Speaking really in black and white, De B. supposed, I would rather not go to university next year. Little black-and-white talking needed for that, to me. It was about how I was going to do things at university. Tutor said something about my disability and not being able to change that. I know, and I have to admit that at times I think that if it were only the simple thing of blindness, it wouldn’t be so difficult. Michelle is also blind, but she is better in all sorts of things than I am. Blindness is what makes all these other things – independence, socialization, assertiveness, you name it – more important than they were had I not been blind. They’re all important for every person going to college – a few years ago I read an article that keeps resounding in my head: it was about college students who couldn’t keep on cause of such reasons, and all were sighted -, but accessibility issues (and general feelings about blindness) complicate the stuff further. De B. said all high school seniors are worried about college. Of course they are; it’s something new and unknown to everyone.
