As of August of 2013, I have moved my blog to Blogspot. Please check out my blog at Blogging Astrid and update your bookmarks. Thank you.
I’m not sure whether to write this here as we changed our blog address to reflect our real name, but I badly need to express myself. As some of you who’ve followed our blog for a while may know, we’ve been partially sighted all our life and lost our vision to a cataract maybe like in 2004. I’so sad that I can’t see colors anymore. I know we will get an operation and this may give me some sight back. The doctor said maybe one or two percent of what a normal person can see. That’s the best outcome. The worst is no increase or even that I’ll lose my light/dark vision.
I know I’ve never truly been able to process my feelings about this. I don’t know why. You’d say this just happens naturally, and in a way it does. I remember we were rushed through counseling when we were at the rehab center. I don’t know how a newly blinded person processes their feelings in just four months. Maybe that means I’m screwed.
I was randomly surfing the web and stumbled across an article on managing children’s misbehavior. The author claims that understanding is not enough, because a child, like most people, will try to get away with behavior just because they can. Therefore, a child always needs a consequence.
It makes me wonder: are we truly as immoral as to try to get away with everythign with which we can? Behaviorism and some aspects of cognitive psychology teach us pretty much this: reinforcement (or the expectation of it in cognitive models) makes us continue behavior, while punishment lessens it. In other words, yes, we will act out our impulses if we can get away with it. Note that this goes for adults as well as children: as the author of the above article states, we do speed in traffic sometimes too.
There is an opposing educational theory which says that children will actually grow up to be responsible adults if we let them and there’s no need to behavior-modify them into it. This theory is in part based on observational learning, ie. a child seeing other children develop into more and more behaved individuals. It is not necessarily some kind of abstract theory, althogh it’s less behaviorally-oriented than the other theory..
I am not knowledgeable enough to know which theory has the most evidence behind it. Probably, it depends on the child and the parents and with the average family, the truth lies somewhere in the middle. Even proponents of the second theory advocate consequences for truly antisocial or dangeirous behavior. For example, if a child won’t fasten their seatbelts in the car, this is a safety issue and needs consequences. Same for the speeding adult. But what if the child wants candy out of candy time or the adult eats the whole bag of chips in front of the TV while they should be cleaning? That’s not a safety issue, and in the adult’s case, there are natural consequences, ie. an untidy house. Do we truly need to make a big deal out of a child’s every misbehavior? I don’t think so.
This doesn’t mean we can’t voice our opinion. In fact, inbetween safety issues and obviously superficial misbehavior that doesn’t even warrant attention, there is a category of behavior that may be negotiable. Letting the child know what you think, but giving them their way if the situation seems to escalate, is a possible action in this case. Note that this is not solely in contradiction to behavior modification: if you end up fighting for an h our with your child and ultimately they get their way anyway, this rewards even worse misbehavior.
I am not a parent and I will never be one. I have just lived through endless battles over tiny things in which I, being the most persistent, often got my way, and I’ve not become an antisocial adult.
“Do not think that I have come to abolish the Law or the Prophets; I have not come to abolish them but to fulfill them. For truly I tell you, until heaven and earth disappear, not the smallest letter, not the least stroke of a pen, will by any means disappear from the Law until everything is accomplished. Therefore anyone who sets aside one of the least of these commands and teaches others accordingly will be called least in the kingdom of heaven, but whoever practices and teaches these commands will be called great in the kingdom of heaven. For I tell you that unless your righteousness surpasses that of the Pharisees and the teachers of the law, you will certainly not enter the kingdom of heaven.” (Matthew 5:17-20 NIV)
Went to church today. The sermon focused on the passage of the Lord’s prayer that says “thy will be done”. In Dutch, it says “let your will happen” as though God’s will is a verdict that dictates our lives. In addition, it suggests we have no obligation to actually do anything to fulfill God’s will. In reality, we do. Of course, if you’re a protestant, you will believe that grace alone can save you. This does not mean that you have to believe that it’s God’s will that we suffer, that natural disasters happen or that people are at war. In fact, this belief is one of the more common turn-offs for non-believers. I personally do not believe that God determines our every life exprience, and neither di our pastor. Humans have choices too, and sometimes, these are tough choices that affect our lives a smuch as whatever role God plays in them does.
Yesterday, I read soomething along the lines of God giving us as much as we can handle. This may be meant as an inspiring message, but it again suggests we have no need to do anything about our lives, or even that we have no ability to. We do, in fact, have the ability and duty to make God’s will happen. Instead of “will”, we might also say “law” or “policy”. Now here we can debate legalism and ask what’s in the law. Does it mean we can’t have more than one crop on our land? Our pastor read Matthew 5:17-20 and highlighted the part in verse 20 that talks about righteousness. We can’t be perfect, but we need to and can do our best to be as righteous as possible.
I suffered a brain bleed when I was an infant. It was so bad that it cause dhydrocephalus, but I do know exactly how severe it was. The hydrocephalus has been asyptomatic since my first and only shunt revision in 1988. However, it is unknown what damage the brain bleed and hydrocephalus did and what this means for daily life. I do not remember and have not heard my early diagnosis.
It is a fact that I have mild motor deficits. I have zero coordination and limited strength in my left hand, have balance problems and general gross and fine motor clumsiness. I have slight weakness in my right hand too. I may or may not have had a childhood diagnosis of something, like mild cerebral palsy or developmental coordination disorder. I self-diagnose as dyspraxic so I can find tips on how to cope. A diagnosis is not important except if it could provide me with services or information that I couldn’t get without one.
Over the past few weeks, I’ve been confronted with the need to explain away my difficulties. I am asked why I can’t cut meat or make bread. Nurses here insist that I try harder, and keep telling me they’ve seen me do more complex tasks. I know I’m also blind and have tried to tell nurses that I just can’t do it, even though I know many other blind people can. This excuse wasn’t accepted by my staff. It seemed as though everything needs an explanation. So yesterday, a nurse from my old institution came around and talked to the head nurse here, and she did mention the brain bleed and motor deficits. It seemed the head nurse believed the old institution nurse even though there’s no documentation of my motor deficits.
Today I finished my treatment plan here in the small town institution. I raised the issue with the psychologist of what to do when my anger gets out of control. I usually only scream, but on rare occasions I throw things. I told the psychologist that, at my old ward, I was taken to the locked ward when things got out of hand. It was written in my treatment plan that I can be taken to the special care unit (seclusion) in extreme cases. I asked whether other solutions would be tried first and the psychologist said it was of course a last resort. Then we got talking about situations in which seclusion was used as a threat in my old institution. The psychologist got a bit annoying here, saying that of course you’re supposed to treat others with respect and if I raise my voice, I will be told to stop. She made it seem as if there would be no solution-seeking then.
I got a bit worried about this, cause I’ve experienced being threatened with seclusion when telling a psychotic person (who was making very personal comments about me) to shut up. This incident, which happened in my old institution, made me feel that staff pick the people over whose behavior they have most control rather than the people whose behavior is most unacceptable. I don’t mean this comment to insult people with psychotic disorders or to suggest that psychosis is unacceptable, but this guy’s comments were.
Fortunately, a nurse I talked to about an hour ago was rather comforting. At my old institution, I was sometimes taken to the locked ward “comfort room”, which was really a reconstructed seclusion room, where, even though it wasn’t locked, I was made to stay sometimes for four hours on end. The nurse reassured me that the comfort room here is voluntary only and you won’t be made to stay in. It’s also not like seclusion. She also said when I told her I sometimes scream when angry, something like: “You only scream?” in a tone of voice as if to say that wouldn’t be enough for seclusion. On my old ward, it most definitely was. This made me feel a bit better. The nurse will show me this ward’s comfort room later today so that I may be less afraid of it.
Why is the system so screwed-up? I am blind, autistic and have mental health conditions, yet you can only get care or funding for care based on your primary disability. In my case this is mental health (including autism, which is strange enough but another topic). So here I’m stuck at a long-term psychiatric ward. Two or three nurses for 22 clients, and most of the clients need substatntial support because of their mental illnesses. This ward is way too hard for me in terms of daily living skills expectations (and yes, I did get several years of training in those skills). The alternative would be a locked ward, which I do not need except that I want to get off the ward sometimes and haven’t yet gotten orientation and mobility training so end up wandering. The blindness agency won’t provide O&M training unless a psych nurse accompany me for my mental health/autism-related behaviors, which haven’t been bad in front of the O&M trainer forever but were really bad once six years ago. There is hardly any structure on this ward, yet on a ward for autistics I tried at, there was some more but all day activities were inaccssible to the blind. Besides, the ward had only one support worker for fourteen clients sometimes.
I am supposed to go live with my husband sometime in the not-too-distant future. It’s not because I have the skills to live with him or am ever likely going to learn them. In fact, besides the obvious reason that we love each other and want to be in each other’s lives, the main reason originally was that there had not been found a suitable living place for me after five years in the psychiatric institution. Now my staff have been using the living with my husband goal as an excuse to expect me to just rub along despite being heavily overloaded already. Screw the system. I am all for community living, but why does this idea always go hand-in-hand with budget cuts, anyway?