blogwithoutatopic.punt.nl
Abonneren
Abonneer je nu voor nieuwe artikelen op deze website!
Laatste reacties
    Laatste artikelen
    [Originally posted on 18 June 2010, when the blog was on weblog.nl]
     

    I'm trying to grow vegetables on our balcony (we live in a tiny flat, third floor). Today my dad and me went out and bought all the supplies: a big black plastic container (dimensions in cm. are l70/w50/h40, approximately), a brown bag (60/60/40) meant to grow vegetables in which is further divided into four suares, earth to fill the containers, extra plant food, a watering can, very sturdy wire fencing, and seeds.

    We went up to the balcony, placed and filled the containers. Then we started on a big protective 'cap' thing made of the wire fencing, over the black container. I finished it after my dad left. I planted pumpkin seeds in the black container before closing off the protective cap completely. It has the dual function of serving as a climbing frame for the pumpkin plant later on because there is very little room on the balcony, and to protect the seeds and young fruit from birds, especially seagulls which are a plague in our town. They can rip open almost anything, so we had to buy something we can trust they can't get through somehow. Then I planted carrot seed, fennel seed, celery seed and kohlrabi seed in the bag-container and protected those with the remains of the wire fencing. It didn't have to be as big a cap because there's no need for a climbing frame there.

    The pumpkins won't all grow (or can't, rather) into full plants, because there's really only room for one of them in that container. I planted a lot of them anyway, to see which ones do best and because I don't think they'll all even come up. I'll have to (re)move the rest of them when they get bigger.

    Below are two pictures of my new 'vegetable patch' taken from different angles.

    Moestuin11

    Moestuin21

    Lees meer...
    [Originally posted on 3 Dec. 2009, when this blog was still at weblog.nl]
     

    [Note: ok, so that post about the drawings I wanted to make? I can't find my drawings, so that'll take a while longer.]

    Why is it that, when I technically also "have" generalised fear disorder, dyscalculia, backpain and IBS (and a bunch of allergies), I mainly think of myself as autistic? When being involved with advocacy stuff and thinking about disability rights, accessibility, that kind of stuff.

    I honestly don't know I mean, this isn't where I start off a long post answering the question I just posed.

    Lees meer...
    [Originally posted on 22 July 2009, when this blog was over at weblog.nl]
     
    (ok, that's probably not true, I bet there are even more infrequent and irregular posters out there, but it's such a nice title!)

    Ok, so what's happened over the past.... *goes to check* .... jeez, 6 months! (In no particular order)

    I made two guest posts on Change.org, autism.change.org to be precise: http://autism.change.org/blog/view/high_hopes_for_the_low_lands and http://autism.change.org/blog/view/high_hopes_for_the_low_lands_part_ii

    I (and a lot of other people too!) was interviewed by Elesia Ashkenazy, over at her blog Aspitude, which you should also read beyond this link because it's good: http://aspitude.blogspot.com/2009/03/world-autism-interviews-norah-vd-stel.html

    I went on holiday in Cornwall with my partner, parents and brothers and it was awesome. May post pictures later.

    Lees meer...
    [Originally posted on 30 Jan. 2009, when my blog was over at weblog.nl]
     
    Sometimes I see people talking about subjects, or initiating projects and such, that are so well intentioned. And the results often indeed have the potential to be very good. Still, I often find myself feeling uncomfortable, sometimes even disturbed. That is because of the almost equal potential for the results to be horrible, and worse: for the results to be horrible, while no one sees it. To many people the results will seem great, no matter if they really are great or not.

    Example: The pledge on Change.org, 'Befriend an Autistic Person'. People make a pledge, as stated, to befriend an autistic person. Because autistic people can have a lot of trouble making and keeping friends. True. We often face bullying, loneliness, isolation. Also true. Having friends, even one, can help us, make us happier, improve our lives, even if it's only a bit. True again. So what is my problem with this pledge? It seems awesome.

    The answer is: It could be awesome. It really could be. But it can also be horrible:

    - If someone befriends someone else just because they think they should, not because they truly like the person, like being around them, doing things with them. I would want someone to befriend me because they like me, because they like being around me. Not because they think they have to, and/or because they pity me.

    - if someone decides they have befriended someone, but it isn't mutual. But they don't recognise that it is not mutual. I, and probably others, might not be able to make that clear.

    - if someone thinks they have befriended someone, but it is not an equal relationships (in terms of power). If they are more a sort of carer (welcome or not, and whether they recognise it or not).

    I probably haven't expressed this in the clearest way, and there might be points that I forgot. But this is why that pledge on Change.org makes me uneasy. The text that accompanies the action does not warn for any of these things. Even if it does, the above things may still happen. But if people are forewarned, they will happen less (so I hope, anyway. I have faith in human beings left).

    (and I really, really don't mean to hurt anyone, especially the people who initiated this, but there is a trap that is so easy to fall into, for anyone, even the warned, that you simply cannot post too many big warning signs, often. And it is currently a good example, and the only one available to me now. I need it to explain what I mean.)

    Lees meer...
    [Originally posted on 15 Jan. 2009, when the blog was at weblog.nl]
     

    I often see people asking the question: "Should I write this about [person I know]? How do I know what would be okay to write about, and what not?"

    The person they know may be anyone close to them, in this case.

    I think the following is a good answer, and one I would try to go by (although now that I think about it, I don't know if I have kept to this in the past, despite not having written a lot of blog posts yet).

    If you think that the person you know wouldn't like you writing it, don't write it. If you think that they would not like reading this, by you, about themselves, don't write it.

    Now, of course, this is pretty logical advice, and I'm not the one who made it up. It's often given as an answer to the question at the start of this post. And then the person who asked that question sometimes says: "But [person I know] will never read this anyway (for whatever reason)". Implying that it's then okay, or at least not so bad, to write it anyway. If they say this, they missed the point. It's not about whether they will ever read and understand it, it's about if they could read and understand it, would they approve of you writing it? If it's not right when they read it, it's still not right if they don't read it.

    Compare it to stealing (may be too harsh an analogy for some people, but it works): It's not only wrong when you get caught. Not getting caught doesn't mean that it wasn't still a wrong thing to do.

    So, I at least will try to imagine what people close to me might think of what I write about them, from now on, and refrain from writing it if I think they would not like me writing it and if they would not like reading it.

    Lees meer...
    [Originally posted on 29 Dec. 2008, back when the blog was at weblog.nl]
     

    I made some christmas cookies this year, and I really liked them (and so did other people). I made some icing too, lemon flavoured. I thought I'd post the recipe. It uses ingredients that should be available in most countries (in Europe and the USA and such, anyway, can't say I have much knowledge about readily available ingredients and food and such anywhere else).

    ---

    Ingredients:

    • 125 g butter (unsalted)
    • 100 g (dark) brown sugar
    • 4 tablespoons honey
    • 1 teaspoon baking powder
    • 2 heaped teaspoons ground ginger (or use however much you prefer)
    • 5 cloves (ground/powdered as fine as you can manage) (or as many as you prefer)
    • 1 egg
    • pinch of salt
    • flour (I don't know how much of it I use, but I just add it at the end until the mixture is the right consistency)

    and for the icing:

    • juice of 1 lemon (or half a lemon, if you prefer)
    • 250 g icing sugar
    • the white of 1 egg

    Instructions:

    Preheat oven to about 170°C.

    Put the butter and the sugar in a bowl, and beat them together for a while (I use an electronic hand mixer, highest setting).

    Add the egg, the honey, the baking powder, a pinch of salt, the ginger and the cloves to the butter and sugar mixture. Beat everything together for a while (again).

    Add some flour (dont start with too much), stir that in with a spoon (or use your hands). Repeat this last step until the dough is the right consistency; meaning, until it isn't very sticky anymore, you need to be able to roll out the dough with a rolling pin (or with your hands) to cut shapes out of it without the dough getting completely stuck on the rolling pin (or your fingers).

    Cut nice shapes out of the cookies (I like doing stars and moons; I cut the shapes out of some cardboard or whatever, and then put them onto the dough and cut around them with a sharp knife to get the shapes I like). Or just roll flat round cookies, or whatever you like.

    Put cookies in oven for about 15-20 minutes.

    When the cookies have cooled down entirely, it's time to prepare the icing. Put the white of 1 egg into a bowl. Add the icing sugar a little bit at a time, while beating/whisking with a small whisk. After that, whisk in the lemon juice. Heat the mixture for just a bit (I put it in the microwave for 30 secnds, highest setting). Let it cool a little bit, then beat it with an electronic stickmixer or handmixer, until it's nice and thick (think enough that it won't dribble right off of your cookies before it's dry when you decorate them). If it won't thicken properly, add more icing sugar.

    Now put it on your cookies. I use this flask that you can squeeze that has a pretty small opening to 'draw' decorative lines onto the cookies. Icing bags or icing syringes don't work so well for me when I have to make cookie decorations, the stuff just comes out in big blobs and I have to use both hands to operate the things so I can't hold the cookie.... it just doesn't work.

    Wait a while (a few hours for me) for the icing to dry (or just eat them while the icing isn't dry yet :D).

    Lees meer...
    [Originally posted on 3 Nov. 2008, when this blog was still over at weblog.nl]
     

    I said I'd do a follow up post about the lower jaw surgery, when my jaw was back to slightly-different-than-normal. It's been that way for a while, and I'm finally getting to that post :D.

    So: no more swelling. The orthodontist has been busy getting my teeth to fit on top of each other perfectly for a while not, with lots of little elastic bands. Personally I think it won't work until they adjust my braces a bit too, because I can feel where my teeth are not aligned quite right and so won't come any closer on top of each other anymore, but I've mentioned it and they don't listen that much, so I'll let them figure it out on their own: insurance is paying for it all.

    Pictures of me pre-, and a series of post-surgery can be found in the gallery section of this forum: http://seedthecommunity.org/, you just need to register to be able to view them.

    The day of the surgery: I went in, they sedated me (I went out like a light), I woke up in the recovery room. I was wide awake almost as soon as I started waking up, no confusion or saying stupid stuff, though I was dizzy and it was hard to move. They helped me sit up (adjusted the bed for me so I was almost upright) and I had to spit out lots of blood (At first I had asked to be rolled on my side, but figured out right away that that was no good). Then they rode me back to my room (I was on my own bed already, whee!), and gave me this little cardboard bowl and lots of tissues, for when I needed to spit out more blood. Then they gave me an icepack that was tied around my head in such a way that all the ice was around my jaws. There was a glass of ice cold water on the stand next to my bed, and they gave us pitchers of it to refill our glass, and told us to drink as much of it as we could. I got an IV with fluids and something to stop the swelling, and I got two kinds of painkillers as a suppository. They worked well, but I wasn't in much pain to begin with. I kept on spitting out lots and lots of blood, it was kind of noticeable. It turned out it had nothing to do with the jaw surgery, but with one of the upper wisdom teeth they had pulled while they were busy anyway. One of them kept bleeding. That was OK, nothing had to be done to stop it unless I was still bleeding like that by the next evening. My head swelled up like a balloon, gradually. Despite all the preventative measures.

    So, I spent the night in hospital because they do that just to make sure. The next morning I was still bleeding ridiculously much, but it stopped during the day and by the time I got to go home in the afternoon, it was as good as over. They asked me if I wanted one last time of painkiller-suppositories, but I refused because they had a nasty effect that I won't go into so everyone can keep their food down. I went home by bus, and I hardly got any weird stares :).

    I had to brush my teeth as best I could with a tiny children's toothbrush and special toothpaste. I also got a mouthwash that did all the actual cleaning, because brushing your teeth after that is just very hard, but it was important to practise right away to keep everything somewhat supple and because it would help the swelling go down faster. Then I had to wash my mouth out with something else after using the mouthwash each time, to counter the stains that the mouthwash tends to leave on people's teeth.

    I used simple paracetamol as painkillers for a day or three, that was all that was necessary. People recommended ibuprofen, but that doesn't work on me at all (I tried, no effect whatsoever). The worst of the swelling went down in a week or two, but the rest of it took its time to go away.

    I had to eat liquid foods for the first week, and soft, pureed foods for 4 weeks after that. I did not like this, but I survived. I have not developed an aversion to yogurt, against all odds.

    After this type of surgery, you have a numb spot on your chin because they have to cut through the nerve on both sides of the jaw. This spot usually disappears in some weeks, or in some months. For some people, it never quite disappears, for others, it will always feel a little different, though not numb. It's now some two months after the surgery for me, I think... The numb spot has very, very slowly gotten smaller. Now it's a very small area on the right side of the pointy bit of my chin. It's not totally numb, but still just slightly numb and it tingles when I touch it. It also sometimes gives weird sensations on its own (they say these things are good because it means the nerve is still alive and giving sensations, and thus probably recovering). I don't mind. They said I'd get used to it, and I didn't trust that because professionals tend to say that and it's been untrue before, but this time they were right (though I suppose it might be the case that not everyone can get used to it).

    In brief:

    • My face looks slightly different now.
    • It will take another 8 months or so before I can lose the braces.
    • My chin is still extremely slowly regaining feeling.
    • I swell easily after surgery.
    • All of the swelling went away eventually.
    • There wasn't a lot of bruising for me after the surgery.
    • My teeth hurt when I chew now because they're being pressured in different places than they were used to before the surgery.

    Tips:

    • Don't panic when you bleed a lot after this type of surgery.
    • You can refuse pain medication if you want to (and probably a lot more).
    • Try to brush your teeth with a tiny and soft toothbrush from day one.
    • Don't panic when you start bleeding a bit again after brushing your teeth for the first week or so.
    • Use an old stocking to make your own icepack to bind around your jaw (it's in the pictures on the site I linked to).
    • Prepare ice cubes for your homemade icepack in advance.
    • Sleep sitting up until the worst of the swelling dies down (Or at least elevated), this seems to help the swelling go down faster.
    • Take 'before' and 'after' pictures of your own face so you can preserve the difference (You and people around you will forget eventually that you used to look slightly different). Also handy for those who don't recognise their own face to begin with.
    • Make sure you have equipment in your home to puree/mash your food.
    • Don't eat hot foods for the first two weeks (I mean as in temperature, but staying away from heavily spiced foods might be a good idea too. I ate my usually warm foods less than lukewarm).
    • Ice cold water or other drinks help the swelling go down.

    If I forgot anything I'll add it later.

    Lees meer...
    [Originally posted on 28 Oct. 2008, when the blog was over at weblog.nl]
     
    I attended this year's NVA Autisme Congres last Saturday. I was pretty satisfied with everything. There were several speakers, and I did not find a single one of them in any way offensive. The stands on the information market were generally nice too, but they're pretty much the same each year. With one exception. This year, there was one stand that had two tables full of all kinds of pills, and on the wall they had plastered the slogan 'Defeat Autism Now!". Stark contrast to the other tables full off generally good books, nice toys, weighted vests, helpful tools for teaching, info about alternative methods of communication, information about housing projects, information about how to get help in the household, etc.

    The NVA is, all in all, a pretty good autism organisation, in comparison. They talk about assistance, accommodation, stories about hardship too, but hardly ever in a way that makes me cringe. They're about opportunities, pointing people in the right direction when they need to find suitable housing and education and such. They also often promote groups completely by and for autistics. In the before last Engagement (NVA's magazine), they had a guest column by one of the Autism Hub bloggers. Not to say there aren't points for improvement (like the fact that within the organisation, there are, to my knowledge, no actual autistics, and though there are autistic speakers at the Congres, they are not represented in appropriate proportion. It's still mostly other people speaking about autistics. And they focus too much on children, though this year they had a section on adults and admitted on having been too child oriented in the past, with services and circumstances for adults being largely unexplored and not in very good state in the country), and so I let them know what I think in the yearly survey. They do seem to pay attention.

    So I wasn't expecting that DAN! stand. We kept an eye on it (my mom and me), and were glad to see hardly anyone even cast more than a passing glance at it, but I still feel very uneasy by it even being present.

    On to better stuff: the two autistic speakers they had this time were good. One was a man in his middle years, with a very successful job at an oil company and a university degree, who got a late diagnosis of Asperger and was finally able to work through problems in his marriage and work out accommodations at work. The other was a young man (19), with a diagnosis of MCDD, who had been institutionalised and much more. Two very different 'samples' of the population if you will.

    The young man has become a cabaretier (like a stand-up comedian but better :P), and he performed some of his act for us. He has a lot of potential; I thought he was already better than some professional cabaretiers whose shows I've seen.

    The first speaker was a scientist who addressed myths about autism. He stressed the need to accept the evidence and move on, that there is no good and much harm in staying with old theories that lead us nowhere. (And I mean the first speaker of the whole convention, not the first autistic speaker or anything)

    The second speaker addressed 'behaviours' autistic people might express, including harmful ones, and pointed out that 'attention seeking' is hardly ever what is going on. She said that, actually, she could not recall a single case where that was what was going on. She pointed out that behaviour is communication, and that the cause should be found and addressed.

    Though I didn't hear anything that was news to me (I try to follow latest news from all over the world and the science etc.), I was really pleased that I went, and I hope it was educational to other people who attended (it's mostly parents and professionals that attend, my mom and me are a minority together with a few more).

    Lees meer...
    [Originally posted on 21 Oct. 2008, when my blog was at weblog.nl]
     
    It seems to be one of the hardest things to acquire. Especially if you're living with a partner or family, but even if you live alone. A story about requesting a PGB (Persoonsgebonden Budget; a budget given to you to spend on assistance):

    First, you need to realise that you need assistance and what kind. Some of it may be obvious, but it's harder than it seems. No one, including myself, considered I might need assistance to live on my own (or with a partner). There were mainly a lot of things that would have been very hard to anticipate: I had to just experience a lot of things before figuring out I couldn't do them or couldn't do them alone. There were also some things that we might have seen coming, if we had considered this or that and had been thinking totally rationally and all. One good thing about all this is that at least my mom and dad and brother could now start figuring all this out in advance, before the fact, for him (my younger brother). All kinds of stuff they can now already determine for him that no one even thought of for me. I'm glad of that.

    Then, you need to go about getting the assistance. There is a lot of searching and bureaucracy involved there. There are some agencies or online groups that can help, but you would need to find those too. When you've finally figured out which people you need to apply with to get assistance with your specific issues (need to apply to different places for different needs), you need to start filling in forms. Might want to consider getting professional help with that, especially if you're not a very fancy wordweaver yourself. After filling in and sending in forms, expect to make a lot of calls. You really need to get those people moving, because it seems like they will do their utmost not to get you the help you need. Including stalling.

    Then they will deny that you need the help you need. They will try to lie and say you're not eligible. If you keep pushing they will want to talk to the people who diagnosed you (because they don't believe you when you say you need a certain kind of help). After that, they will try to tell you you need to follow (and fail) all kinds of courses that are totally irrelevant to the kind of assistance you specified that you require (and if you followed any and did not fail they will say you don't need their help, because the courses will have solved your issues). They will then call up your local autism centre and ask them too if there are courses you could follow instead of receiving the requested help.

    After you've pushed them a lot (and several weeks later than the amount of time they say they need to judge your request), after your psych (or whoever diagnosed you) has told them you really do need that help and courses won't be of any use to you, after the autism centre has told them there really aren't any courses for people like you and the help you already requested really is the best and only way currently available to help you, they will grudgingly give in.

    Now you can rejoice: you will be given a budget for specific assistance for a certain number of hours per week. Yours to spend with whatever agency you think will best give you that assistance.

    Mine is for 'activerende begeleiding' (assistance with doing stuff outside of the house, like going places and buying groceries, among other things), and I will get enough money to pay for 3.9 hours of this assistance per week. This means I will finally be able to do sports twice a week (we'll have to figure out something else for the groceries, sports get priority for now): swimming. And maybe I can save up some hours to do something bigger every now and again. That is, if next year's changes to the PGB won't mean I lose my assistance again.

    ---

    On to the second subject:

    I've been fairly critical of the agency that gives me money for this assistance and that passes judgement on my claim to assistance. In a better world, I could be critical of them and not have any fear of losing my assistance. Of course, in a better world, they probably wouldn't have tried so hard not to have to help me. I find it sad that I do feel somewhat fearful (though I'm not keeping my mouth shut). Of course, chances are high that no one will ever even see this post, or at least no one who would get angry at it.

    I would like to feel free to talk about not only positive things, but also negative things I see about the agencies that give me my disability income and my money for assistance. Instead I feel very uneasy.

    I depend on these people, and there is no problem with that, and since these are things I honestly need, there should be no feeling of guilt, no fear of speaking freely. But they can make one feel like a parasite, like one's every move is being watched, like one is not free to speak as one wants, and definitely not free to do as one wants: I feel the need to perform, get a job, any job they find for me and try to keep it even when I feel that I am performing above my ability and will not be able to keep this up and stay healthy, feel the need to prove myself. I'd like to be able to finish my studies at university, get my Master's degree, find a job at my own pace that I can keep up and do from home and get all the help with that I need, write a book for which I have had the idea in my head for years now. But I don't know if I'll be allowed.

    Lees meer...
    [Originally posted on 30 Sept. 2008, when the blogwas over at weblog.nl]
     
    I've realised, after taking a look at my own blog, that it might seem as though I only write about 'negative' topics, things that go wrong or that I have trouble with.

    This is not actually the case. Some of these things might bother me somewhat some of the time, but mostly they don't. I'm used to them. I write about them not because they bother me, but because I'm just very interested in and fascinated by them. Not just my own issues either, but others' too. I restrict myself to writing about myself, though, would feel rude to write about other people and it would be inaccurate anyway, since I can only observe from the outside.

    Diseases and disorders (or however you like to coin these things, I have to call them something so for now this is it) have always been one of my big 'perseverations.' (Neither that term nor any other sounds good to me, but ye gods, the Dutch word 'fiep' is the single worst of them, never have I heard a more derogatory and dismissive and looking-down-on term).

    I used to read medical magazines (that they publish those official article thingies in written by doctors and scientists) from a young age, and any other books on the subject. If they had pictures, all the better, since I couldn't always understand medical lingo.

    Long before I recognised myself in the descriptions and lists of symptoms, I had been reading about autism (some of those books were pretty bad, too, but I didn't realise that then). Finding out I was autistic myself was actually quite... exciting to me. For a lot of people this may seem strange, but I was quite glad. So, apart from being autistic, autism is now one of my big interests, grown out of the still standing interest mentioned above, to be a special interest all on its own. And that is mostly why I write about it and stuff I think might be related.

    A lot of stuff might seem horrible or negative to outsiders, but to me it's mostly neutral, sometimes not so nice, sometimes very nice, and almost always fascinating. Outsiders will not always be able to tell which of the three/four I'm feeling about a particular subject. For instance, not having a feeling of 'this is me' when you look in a mirror and your reflection seeming like a stranger to yourself might seem pretty bad, but to me this is a neutral-to-positive-madly-fascinating thing. So, far from a bad thing.

    Lees meer...
    Domeinregistratie en hosting via mijndomein.nl