Why do I hate to be classified as a “success story” by parents of children who in one way or another are like me? It happens all the time in the preemie and behaviourally troubled communities that I’m involved with, and to a lesser extent in other support places. I know I could’ve come out worse, and these statements are meant to be compliments. And yet I feel deeply hurt when hearing this statement.
I think that in a way it relates to my ever-changing concept about myself in these areas. How behaviourally troubled am I, really, I wonder. At times, one’d think I’m just a little self-willed, while at other times, one’d say I’m seriously disordered. And what effect did prematurity truly have on me? At times, it’s only blindness - about which my concepts are also constantly changing -, and at times, behaviour/social things add to it and I’m concerned with the emotional impact of the issue on my family. At times, I’m thinking about myself as having beaten the odds, while at other times I see myself as one of those miracles who came out less fortunate than the newspapers would like to know about preemies.
Another thing is how I know people have hopes for me that have been shattered lately, or are likely to be shattered. My going to college just fine is one of them. I still haven’t made any arrangements (besides trying to apply, but the IBG website was down all the time), and actually I’m not feeling like it one bit. I have no idea about it at all, and I’m feeling very weak.
But there is more to it than college. There are the communication/social difficulties that I’ve gotten seriously troubled about lately. I so desperately try to be sociable and communicative, to reach out, but I cannot and at times feel I shouldn’t. They contribute quite a bit to the practical problems, and I’m feeling really bad about it. There are the behaviour issues, eg. the frustration tolerance stuff. People say I’m abusive or terrorize others. When I posted about it on the behaviour trouble forum I mentioned, people apparently thought I meant that the folks at the forum said these things about their children. *My parents* say these things, and they hurt so deeply cause I wish I knew how to get over these issues. I don’t intentionally abuse or terorize people. At times, I think my parents are exaggerating, but I do not allow myself to think that way, cause it reminds me of my attitude in late 1997, blaming my mother for all that went wrong in my situation. Either way, I’m not intentionally acting this way, and I so desperately want to get better.
I know what I’m doing on these support places. I’m advocating for children to get support in a way that I feel I lacked. Not that my folks intentionally left me to my own resources. In fact, they did many things for me. They did everything to get me to go to normal school and to prevent institutionalization at the school for the blind. But at times I feel my difficulties were/are being greatly overlooked. It’s my resposibility, now, of course. I am legally an adult, so I should be able to make my own decisions. At times, I think I should be able to change my situation. But at other times I wish that I hadn’t been so reluctant to acknowledge my issues back in 1996 and 1997, cause then I was still a child and may have been able to learn to be “normal”.
I feel resentful, at times, although I’m not blaming my parents for my current situation. One never knows in what situation I’d been if something else had happened. And, of course, who says that I’m troubled at all?
I am increasingly feeling bad, for I seem not to have met the hopes/expectations set for me. I am greatly struggling, still have difficulties that I always hoped would be away when I was a grown-up. I’m not quite a grown-up, of course, but age eighteen is a culturally sensitive age, for one reaches legal adult status. There’s quite a difference between legal statuses and one’s true state, but I think that’s universal for all young adults/older adolescents. Still, I don’t think my state of skills or lack thereof is supposedly normal. I see many people my age, including lots of blind people, being more sociable, comunicative, and independent than I am. Is the social thing a blindness topic, I wonder? I know many blind people who have experienced difficulties with it, though to a lesser degree than I have. Both at the summer programme and at the course a few weeks ago, I noticed that communication was said to be a major difficulty associated with blindness. Then, it’s about things like non-verbal communication. I’ve never considered that a major issue, probably cause I don’t notice its importance. I simply don’t know how folks form groups or get to chat to each other, which appeared to be started with a non-verbal signal, like making eye contact. But for me, there’s always been this “kept from” thing, and a lack of knowledge of how to express certain things appropriately, that I’ve not noticed in other blind people, and that I cannot associate with an implication of blindness.
Behaviour issues are not blindness problems at all, or you should believe Mum’s theory, which I don’t do. And the independence issues may be related to blindness, but are not inherent consequences of it. I don’t know if it is a lack of ability or motivation or a difference on the part of others that caused me to be so behind, or a combination of these things (which is likely). At times, I feel left to my own resources in the areas of behaviour, social/communicative issues and independence things. And I’ve felt this way for a long time, long before I reached the age of eighteen. I’ve known I had behaviour/social issues for seven years, and I’ve always wished someone understood my perspective on the situation. Yet how should I have made clear this? And would it have helped? I was never the one to express these feelings - whenever someone seemed to recognize the issue, it was their idea, not mine. I think I cannot blame folks for this, since they always thought I was unwilling to change. I know that there are probably few people with behaviour issues on the forums, cause they don’t realize, or can’t express, the concern. The first time I ever remember showing I wanted to change, was at a summer camp in 2000, and there are still times when I don’t seem to acknowledge my issues. These are often when it seems that I’m intentionally hurting people, which isn’t the case. But I’m very sincere in wanting to be “normal”.
Ain’t I “normal”, I wonder, again? Too often, I get the “you’re just a little self-willed” thing. Or strangers will say that all adolescents clash with their parents at times. It is meant as a compliment, of course, but it overlooks the sincerity of my concern. I haven’t become this way in adolescence, and I ain’t just a little self-willed. I am so desperately looking for people to understand my point of view, and that’s one reason why I hate to be called a “success story”. It simply ignores my current difficulties. I haven’t overcome the odds yet, and I wish I had.
Astrid
