tag:blogger.com,1999:blog-63247044982643477052024-02-19T03:13:24.556+01:00The daily days of an AspergerIsshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.comBlogger132125tag:blogger.com,1999:blog-6324704498264347705.post-28281384425971628212016-08-04T13:39:00.000+02:002016-08-04T13:39:00.016+02:00OSM Toy Review<!--[if !mso]>
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<div class="MsoNormal">
<span lang="EN-GB">A few weeks back I've been sent an OSM Toy
by ChewiGem (here is their website: http://shop.educadora.nl/index.php ) and I
would write a review about it in return. I'm always happy to do things like
this, as it gives me an opportunity to try something new that might benefit me,
and I can tell others about my experiences as well.</span></div>
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<span lang="EN-GB">First of all, let me explain what an OSM
Toy is. An OSM Toy consists of a few discs that can be interlinked, and then
twisted around. You can add as many discs as you like (or as you have bought).</span></div>
<div class="MsoNormal">
<span lang="EN-GB">It looks like this:</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe1CILB_poDwT9TARqCEbIOuPQZHaSiIAukoGoSxXvtnNuet8d1Igd35ADtnAv-_JWqQl5ELKvIiMJHkWz0Jyp1c4afpqFu4RuZ1fpJJFxcNhj2NKO_OCL8UoZe2Iw_2ixkfdwnNWShQpF/s1600/IMG-20160727-WA0003.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="180" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhe1CILB_poDwT9TARqCEbIOuPQZHaSiIAukoGoSxXvtnNuet8d1Igd35ADtnAv-_JWqQl5ELKvIiMJHkWz0Jyp1c4afpqFu4RuZ1fpJJFxcNhj2NKO_OCL8UoZe2Iw_2ixkfdwnNWShQpF/s320/IMG-20160727-WA0003.jpg" width="320" /></a></div>
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<span lang="EN-GB">Here is a link to a video on Youtube where
you can see how the toy is being interlinked and twisted (I do not own this
video): <a href="https://www.youtube.com/watch?v=BGqM7w01Tvk" target="_blank">https://www.youtube.com/watch?v=BGqM7w01Tvk</a></span></div>
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<div class="MsoNormal">
<span lang="EN-GB">The OSM Toy can be used as a stress
reliever and to stim (self stimulatory behaviour) with it. It can be very nice
to use if you fidget with your hands a lot, like I do.</span></div>
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<span lang="EN-GB">When I first held the toy in my hands, I
honestly wasn't that impressed. I was excited to try it, but thought I would
forget about it soon, and it would end up gathering dust somewhere in a corner.
But then I tried it. I starting twisting it, while watching the tv, trying to
relax from all the sensory input of the day. Before I knew it about an hour
passed and my sister remarked that I must like the OSM Toy, as I was still
twisting it in my hands. I barely even noticed until she said that! I was
surprised. It did, in fact, subconsciously help me concentrate on the
television.</span></div>
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<br /></div>
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<span lang="EN-GB">I never review something just for myself. I
want to know how others respond to it too. So I gave the OSM Toy to my sister
for her to fidget with. She doesn't regularly fidget with her hands, like I do,
but she does have a lot of restless energy that needs to get out in some way.
So I wondered if the OSM Toy would help her relax.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Sure enough... About another hour later I
remarked that my sister must like the OSM Toy too, as she was also still
twisting it. She said it did in fact helped her relax and that the twisting is
strangely addicting.</span></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Soon my parents and brother saw the toy too
and, without me asking them, they immediately wanted to try it and they liked
it. It's a very simple toy, but the twisting is, like my sister said, very
addicting and very relaxing.</span></div>
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<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">There's actually very little negative to
say about this toy. It does what it has to do and it does it well. If I did
have to say something negative, I'd say that mine arrived with a tiny piece of
one of the parts that interlink broken. You can see it in the picture below
this paragraph. The bottom left black disc, where it interlinks with the white
disc. But even though it's broken, it still interlinks and even properly
twists. I have to say I'm pretty amazed by that. The price is fine for one OSM
Toy, but if you want more to make the circle bigger, the price adds up quickly.
But even one OSM Toy works great, and if it really helps you a lot and you
really want more, it is totally worth it.</span></div>
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<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoctpF1rndO8fI1FgOxLt2BdfV9XdxKZYI0h-Za9DEm4bRVjUta_-wg2nEx2jQUemiQJosQCmyngiQek-hEzzIj19nTZxALTpE3A6jmepUQJKLvM6Mu4F_YKyVzemJVjDUno-Q344BUUmz/s1600/IMG-20160727-WA0000.jpg" imageanchor="1" style="margin-left: 1em; margin-right: 1em;"><img border="0" height="320" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjoctpF1rndO8fI1FgOxLt2BdfV9XdxKZYI0h-Za9DEm4bRVjUta_-wg2nEx2jQUemiQJosQCmyngiQek-hEzzIj19nTZxALTpE3A6jmepUQJKLvM6Mu4F_YKyVzemJVjDUno-Q344BUUmz/s320/IMG-20160727-WA0000.jpg" width="180" /></a></div>
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<span lang="EN-GB">I still pick up the OSM Toy every now and
then. I alternate between my stress ball and the OSM Toy. When I feel the need
to squeeze in something, I'll get my stress ball. When I feel more of a need to
fidget around with my hands, I'll get the OSM Toy.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-18065770954389695712016-03-09T02:44:00.001+01:002016-03-09T02:44:40.419+01:00Happy tears<p dir="ltr">Roughly 10 years ago I collapsed and saw my whole life get turned around for the worse. For a while I couldn't get up. For an even longer while I couldn't even get to the nearest supermarket, which is a 5 minute walk from here.</p>
<p dir="ltr">I went through all the medical evaluations the doctor could think of that matched my symptoms, and they found nothing. I went to a psychologist, who misdiagnosed and mistreated me.</p>
<p dir="ltr">Somewhere, around here, I started doing my fitness at physical therapy, which is the only place where I can do it now, and where I'm still doing my fitness.</p>
<p dir="ltr">After a year of this I found a new hobby, new friends, a boyfriend (who didn't last) and felt slightly better. But I was sure my real diagnosis was missed and I'd soon collapse again. Just as sure as my psychologist was that I would be fine.</p>
<p dir="ltr">So obviously, after a year, I collapsed again.</p>
<p dir="ltr">I went through even more, new, medical examinations, before being sent to a medical psychologist. She diagnosed me with chronic fatigue, helped me manage my fatigue, had many conversations with me, and sent me to a new and better psychologist to have me checked out for asperger's.</p>
<p dir="ltr">So soon I'd know I'm chronically fatigued (with all the other symptoms, like light sensitivity, muscle and joint aches, getting ill a lot, hyperventilation attacks, etc), and that I have autism. I got some help for this and some support at school. But not a lot.</p>
<p dir="ltr">With a whole lot of fighting, getting bullied, being misunderstood, being pressured, etc. I got through high school (VMBO) and got my assistent baker diploma.</p>
<p dir="ltr">But I couldn't hold a job. I was sick at home so often.</p>
<p dir="ltr">I applied for social security for the disabled (WaJong). The people who manage this (UWV) forced me to work 20 hours a week. I told them I couldn't. That I was sick way too often. They still forced me.<br>
Obviously, this didn't work out. This was so much for me, that I got sicker and sicker again. I kept being sick at home more often, without knowing why.<br>
I had days where I couldn't even get up. When I'd call in sick and say I couldn't get up, I would get a lecture about the importance of showing up at work. Both from my boss, and from my jobcoach.<br>
Like motivation is the problem when I'm unable to get up...<br>
Some of my colleagues were also not particularly understanding and found that they needed to be sure that I knew that...</p>
<p dir="ltr">After 2 years of that, I collapsed mentally in front of my jobcoach. She gave up and filed a report that I was unable to hold a job. I got a 'recovery period for an undetermined amount of time'.</p>
<p dir="ltr">I went to a chronic fatigue specialised centre, where they did some more examinations. They had me referred for an asthma test.<br>
Yes, I had asthma! To know that was wonderful. Now the hyperventilation attacks were explained and treated.<br>
I've been thinking I had asthma several times already, but my pediatrician didn't take me seriously. I'm glad the chronic fatigue specialists did.</p>
<p dir="ltr">But this didn't explain all my symptoms, and even when my asthma got stable, I still got sick a lot.</p>
<p dir="ltr">A few years passed. I occupied myself by putting up events and learning a lot about autism, and becoming an autism experience expert in the process. I also tried to get good coaching for living on my own, which failed (as you can read in older blogposts). I did some more things, but I don't have to make an autobiography here.</p>
<p dir="ltr">Now, several years ago I had a really bad response to some antibiotics. I had my blood and feces checked out. My pediatrician said I only had some raised inflammation levels, but that it was within the norm. She wasn't about to do more testing. I got angry and wanted those inflammations to be checked out, but I got refused.</p>
<p dir="ltr">Ever since my bowels were really sensitive to virusses and bad food, but my pediatrician ignored it.</p>
<p dir="ltr">A year ago I suddenly had 6 cases, of what the doctors then called a stomach flu, in 9 months. I sounded the alarm at my pediatrician. She said I was probably just unlucky.<br>
I should've gotten a second opinion here, in retrospect...<br>
She told me to wait it out.</p>
<p dir="ltr">I felt worse. I told her. She told me to see what happens. If it gets better.</p>
<p dir="ltr">At some point I couldn't eat anything with vibers normally anymore. It hurt me a lot and I couldn't digest it. I told my pediatrician this.<br>
She said 'fine, I'll refer you to the specialist, but I don't expect anything from it.'</p>
<p dir="ltr">Well, as you have probably read in a blogpost from December: I have Crohn's Disease.<br>
In my pediatrician's defense, she did apologise... And continued to make some excuses... Ok, no defense, whatever.</p>
<p dir="ltr">It hasn't been that very long since December yet, but it feels like ages to me. Since then I got 2 types of medicine (inflammation stopper and an immune system represser) and vitamin D to treat me. And I got regular blood tests (I'm very sensitive to the pain of the needle! Even with a local sedative!).<br>
I got up with pain, I went to the toilet with pain, I ate with pain, I went to bed with pain.<br>
Two weeks ago I got so sick from the flu, it hurt my bowels so much, I ended up at the emergency room to be checked out.<br>
Luckily nothing serious was going on.</p>
<p dir="ltr">But today...<br>
Oh today...</p>
<p dir="ltr">Today I got the new blood results back.</p>
<p dir="ltr">Guess what?</p>
<p dir="ltr">My inflammation levels are down to normal levels! Yea baby!<br>
Everything was not for nothing!<br>
I'm soooo happy!</p>
<p dir="ltr">Am I cured now?<br>
No.<br>
I still have Crohn's Disease. It might still pop up someday, maybe even in a worse way.<br>
But for now, the inflammation is down to normal levels and that's something I couldn't even dream of before!</p>
<p dir="ltr">Yea, I'm not there yet. My bowels still have some damage to recover, my vitamin D is going to take a while to build up and I'm still on the immune system repressors for maintenance.</p>
<p dir="ltr">But man! I got a diagnosis, a treatment and my inflammation is gone for now!</p>
<p dir="ltr">After all those years of fighting, I now have this.<br>
After all those years of being ridiculed, pressured, not being believed, turned away, bullied...<br>
I now have a diagnosis and a treatment and I know it works.</p>
<p dir="ltr">It feels like the end of an era.</p>
<p dir="ltr">I cried happy tears today.<br>
Actual happy tears...</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-63793345788674992782016-03-07T03:21:00.001+01:002016-03-07T03:21:17.855+01:00Asking more than I can give<p dir="ltr">There is one thing that has always hurt me a lot about my disabilities. That thing is that I will always have to ask more from the people around me than that I can give back, even when I try my hardest.</p>
<p dir="ltr">When I'm ill, I need a lot of support, because my body can't handle it very well. My autism makes me sensitive to pain and makes it hard to regulate time schedules for medicine, know when to find professional help and when not to, makes it hard to go to appointments by myself, and many more problems. A snotty nose or the flu may lead to breathing problems, which may lead to asthma attacks. All the bodily and psychological stress from all of the above may cause my crohn's disease to act up, both this and asthma needing me to find help urgently, for which I refer you back to my list of problems autism cause.</p>
<p dir="ltr">All of the above can also cause me to not being able to get up, or even faint, meaning that I need someone to get me food, drinks, help me get to the toilet, or even catch me.</p>
<p dir="ltr">When someone else gets ill, I will most certainly be prepared to return the favor. I'll be there! But with very limited energy. I will need to rest way quicker than anyone else to avoid getting sick too. Need something at that point? Can't do it, or I'll be of even less use to you due to the consequences of overstepping my limits.<br>
Oh, yelling in pain? Erm, yea, I'm now frozen in place until there's a moment of relief, because of my hearing sensitivity. Need me to get in contact with the doctor? I certainly will. I just hope there won't be some social misunderstanding. Need me to keep track of your pills, doctor conversations, etc. while you're still overloading my system with yelling? Erm... How?</p>
<p dir="ltr">And this is just about getting ill.<br>
How about the fact that I have emotion regulating difficulties, so I need to scream to let my emotions out sometimes, but when other people scream I get overloaded, so I need to leave the room instead of holding their hand?</p>
<p dir="ltr">Or how I can't keep track of routine, so others, or electronic devices, need to keep me on schedule, but I can't return the favor, because if I can't do it for myself, then how do I do it for others?</p>
<p dir="ltr">These are just a few examples of other people going overboard to accomodate my needs, where I can't give the same amount back.<br>
Sure, I try really hard, and I don't think I have less value or something like that. I also know it's not my fault and that there's a reason I have those needs.<br>
But I AM constantly aware of having special needs that I can't offer back.</p>
<p dir="ltr">Every once in a while this gets to me. Then I want to do something equal to what they're doing for me. I'm at a loss for what to do though.<br>
So all I can do is say 'thank you' from the bottom of my heart and remember those people are still there for a reason; I must be giving enough when I give all I can.</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-24254306857756044852016-02-29T15:15:00.001+01:002016-02-29T15:30:14.217+01:00Dear mom in the supermarket isle<p dir="ltr">Dear mom in the supermarket isle,</p>
<p dir="ltr">I see, and hear, you there with your child on the floor, who is having a meltdown.<br>
You catch me staring at you with a very frustrated look in my eyes. You look back with a look on your face as if wanting to say: "What? Stop judging me. You have no idea what our story is. Try it for yourself for a day..."</p>
<p dir="ltr">But I do understand. I really do. Because you see... That look of mine wasn't meant for you, or your child. It wasn't a stare of disapproval, even though my highly annoyed face clearly looked like it.<br>
You see... You don't know my story either. Don't worry I'm not angry at you for it. In fact, I sympathise. Of course you'd think I was judging from my stare.</p>
<p dir="ltr">But I have autism. And your child is causing a high sensory overload.<br>
Maybe your child has autism too, and the sensory problems the supermarket causes is what caused the meltdown.<br>
I understand. I really do. I had a meltdown in a supermarket last year too, and I'm an adult. Other times I know how to keep it in 'till later, but I do understand how your child is feeling. It's all so overwhelming.</p>
<p dir="ltr">But I can't stop looking so frustrated. You see, my sensory overload that your cjild is causing me is pushing me to the point where there's only so much that I can do to not start having my own little meltdown right next to your child. And then you'd have two people to take care of.<br>
I can't keep my frustrated look away, because from the inside I'm exploding. That frustrated look is already me holding back.</p>
<p dir="ltr">At this moment I have to stop shopping, wether or not I have everything I need, pay for my groceries, and get to the car as soon as possible. In the car I'll have my own meltdown, all by myself. I won't be able to drive home until all of that is processed.</p>
<p dir="ltr">Mom in the supermarket isle... You don't have to worry about me. I'll be fine. Tend to your child.<br>
All I wish to accomplish is to say sorry for making you feel judged all the time, and I hope that you read this and the next time you see me staring, you'll consider the posibility that I might simply be sensory overloaded, instead of judging you. Maybe then you'll feel less judged. Maybe.</p>
<p dir="ltr">Mom in the supermarket isle, I'm sorry for making you feel this way every time. I hope this letter can make a difference.<br></p>
<p dir="ltr">Sincerely,</p>
<p dir="ltr">Your autistic friend who really does understand and care, even though it doesn't always look like it.</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-72563929679375612352015-12-13T01:26:00.001+01:002015-12-13T01:26:12.021+01:00New diagnosis<p dir="ltr">I am just going to say it outright: I have Crohn's disease.</p>
<p dir="ltr">Now, before you get all panicky, hear me out.<br>
I've been walking around for many years with bowel problems now. Doctors didn't take me seriously. Some tests were done, but never proper tests by specialists, so nothing specific came forward and my pediatrician wouldn't do any more tests or refer me to a specialist, even though the problems never fully disappeared. They only flared up every once in a while.</p>
<p dir="ltr">That is, until last year. Suddenly I had 6 stomach flues in 9 months and after that all my symptoms worsened. In hindsight I'm guessing the stress from the unfitting coaching and training caused Crohn's to flare up.</p>
<p dir="ltr">I had several visits to my pediatrician, until she finally referred me to a specialist (to check me out. Not 'cause she suspected anything specific). This specialist soon had a suspicion, which thorough testing and a colonoscopy confirmed: Crohn's disease.</p>
<p dir="ltr">But my response was mostly (not a 100%, I did have a few tears at some point) one of relief. This surprised many people and had some even question if I even understand the nature of the disease. So I'll explain myself.</p>
<p dir="ltr">Yes, I do understand the nature of the disease. I've been told by the doctor that I have only 2 inflamed spots, no blockades, cysts or other such things. This makes it mild at the moment.<br>
The doctor told me that if the medicine catches on (we'll see in time), he expects I'll be with minimum symptoms and I can switch to a medicine meant to simply maintain it.</p>
<p dir="ltr">Seeing as I first had a diagnosis (chronic fatigue) that simply meant "We have no idea what it is, or where it came from, or what to do about it. Just accept it." and now I have a diagnosis that goes "We have no idea where it came from or what it might do in the future, but we know exactly what it is and we got many possible treatments" I actually feel like I made a step up!</p>
<p dir="ltr">Ok, now for the serious, darker part. I read online that 3 out of 4 Crohn's patients need bowel surgery at some point. This scared me and is what caused the tears at some point. I started doubting if I was indeed taking this too lightly and asked about this on a Facebook group for patients with Crohn's disease. They said I was right to be happy about having a diagnosis and having it be mild. They did also say that Crohn's disease is different for everyone and can just randomly turn around at some point. But when and if this moment is ever to happen, nobody knows.</p>
<p dir="ltr">They say that some people with mild Crohn's live their lives almost symptom free, and others feel fine one day, and suddenly need to be taken to the hospital the next. And everything in between.</p>
<p dir="ltr">They said that because the future for Crohn's disease is so unpredictable, I might as well enjoy it while I still have mild Crohn's disease and not worry about the future too much.</p>
<p dir="ltr">This is why I'm mostly relieved. No, I'm not without grieve. The possibility of bowel surgeries in the future does scare the heck out of me. But I can't just focus on that, as it will absolutely destroy my life. So instead I focus on what is now. And what is now?</p>
<p dir="ltr">Now I have a diagnosis AND treatment AND a possible future with minimum symptoms, where first none of these things even existed.</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-30264359819215647342015-10-21T04:09:00.001+02:002015-10-21T12:35:06.432+02:00Thank you<p dir="ltr">I know it has been a VERY long time since I last blogged. I apologise for that. Some people have even been wondering if I stopped blogging entirely. I didn't. I was busy with my training to learn to live on my own. They're very set on privacy there, so I wasn't allowed to write about it. Not even without mentioning names. And most of the things worth writing about involved me in interaction with others.<br>
Seeing as most of my life revolved around the training, I put a pause to writing.</p>
<p dir="ltr">It was a shorter pause than I expected though, as the training didn't work out well for me. The coaches couldn't give me the kind of help I needed, which had me crumble down more and more. It's not that I didn't learn anything. In fact, I learned quite a bit! But the lack of the kind of support that I need took quite a toll on me.</p>
<p dir="ltr">I decided to stop, to protect myself. Shortly after I went into a big panick attack and collapsed. It was a pretty horrible experience.<br>
Everything just seemed wrong. My trauma got triggered (authority figures who are supposed to catch me when I fall, who don't), I was exhausted beyond believe, I didn't feel prepared for the future and I didn't know how to move forward. I felt like everything that I would do would just end up horribly. This made that big collapse happen. Because if everything you do feels wrong, then what do you do? I didn't know anymore. Childhood all over again.</p>
<p dir="ltr">But this time it was different.</p>
<p dir="ltr">I wasn't alone. Well, I wasn't as a kid either. I had my parents and siblings. But they were at a loss for what was happening too back then. Fighting to help me and to find help.<br>
Now they knew exactly what was happening and what was needed. They were being amazing. They were my first line of defense in fighting this feeling and I couldn't have done it without them. My psychologist was there for me too. Not just with appointments, but also calling me every day, so I could unload every little bit of panick and deal with it.</p>
<p dir="ltr">Besides all of that great help, I got you guys. My friends. My readers. My supporters. My volunteering work colleagues. Facebook groups. Tweeps on Twitter. Everyone.</p>
<p dir="ltr">Wow! I was, and still am, just amazed at the people who are there for me. I actually had to tell some people to hold on, I'd talk to them later, because I had so many concerned people wanting to know how they could help me, and I couldn't tell my emotional story that many times over.</p>
<p dir="ltr">What a luxury problem is that?? I'm not saying 'stop asking me, it's too much'. I'm saying 'even though I can't always adress everyone at the same time, thank you for asking and keep doing that. Because it makes me know and feel that I'm not alone and that people care for me.'<br>
Thank you so much!</p>
<p dir="ltr">After a few weeks, I started doing my volunteering work as an experience expert again. There were many people who needed help. Some even with huge problems, that had me put things in perspective and wonder if I should be dealing with those things right now.<br>
But then their gratitude... The same gratitude that I'm feeling towards all my supporters. And then I know it's worth it. That this is why I love doing this. Knowing that I can make that same difference in someone's life is what makes me happy and stronger too. You guys give me the strength. You light my inner flame. And if I can share some of that flame with others too, I'd gladly do so.</p>
<p dir="ltr">I know this is a very cheesy blogpost, but I felt it had to be said. I was watching Youtube videos from Markiplier. For those who don't know: He's a Let's Player, which means he plays games, records it and puts it online. Markiplier is a great person, who just loves to put smiles on other people's faces. He often thanks his community for all their support.<br>
I was nodding in agreement when he was talking about how much their support helped him. Sure, I may not have millions of subscribers like he does, but I do get the feeling of going from almost nothing to a full fledged support system.</p>
<p dir="ltr">And then it hit me: Did I ever say thank you? Maybe to individuals, yes. But did I ever express my thanks publicly? Should I? Yes, I think I should!<br>
So I decided to write this.</p>
<p dir="ltr">Thank you so much for being there. Everything from a small note of support, to being there day in and day out, and everything in between. It's all so important to me.<br>
Keep being awesome everyone.</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com1tag:blogger.com,1999:blog-6324704498264347705.post-53832182888668897562015-01-29T14:48:00.002+01:002015-01-29T14:48:30.583+01:00Moving into my new place<!--[if gte mso 9]><xml>
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<span lang="EN-GB">It has been a while again since I last made
a blogpost. This is because I'm busy with moving into my new place, where I'll
be learning how to live on my own.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I've never moved to a new house in my life.
I've always lived in the same city, in the same house. This worked fine for me.
I'm not moving to a new city,
but just moving in itself is a whole new experience for me. I never knew how
much needed to be done, how many new skills you need to learn, how much certain
things cost, what companies you need to deal with, what insurances to get...</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">It's all so much!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">And that's just all the practical stuff. I
have problems with change, remember? This is a really big change! So we had a
big meeting with my psychologist, two coaches, my sister and my parents. In
this meeting we decided I'd move at my own speed. No hurry. The move is a
learning experience all by itself. No need to rush it.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">This makes me the last person in the
building to make the full move. This has hurt me a bit, as it took me back to
the time where I still went to school and I immediately was the odd one out,
because I couldn't go to school full time. People would ask me if I wanted to
tell people about my disabilities or not. I would tell them there's no point in
hiding it. I'll be 'that girl that's always absent' anyway. Might as well
explain it to them.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">This is how I felt about moving in last
too.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">But the other guys (yes, everyone in the
training, besides me, are guys) have been very nice about it. They have offered
their support where-ever they can. Bless them!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">As you can read in the above segment, the
move is also bringing about a lot of feelings from the past. In other words, my
trauma. I'm going to be around a group of people my age 24/7. That's bound to
trigger a thing or two from my past. And it has. But we're all working on it
together. I really hope this will end up to be a good experience. That'll be so
great! I've already ran into a few obstacles. Other people having other
routines than me, my coaches not knowing fully how to specifically communicate
with me, having to rethink my financial situation, etc.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">The last few weeks haven't been easy for
me. But I got such a great support system. I love everyone who have supported
me so far and is still doing so.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">It's hard to write about every aspect of
moving into a new place. There is just so much! It has an impact on all of my
disabilities, but also on the whole of me as a person. I think I already
thought it wouldn't be easy at all, and even then I might've underestimated it
a bit.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">But right now the walls are painted, the
floor is polished, the curtains are up, the bathroom is functioning... All that
needs to be done now, in a practical sense for my room, is to put in furniture.
Then the room is ready for me to move in.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I won't lie to you. I'm scared. I really
am. But I'm also excited. Excited enough to push through my fear. So let's go
for it!</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-45462894145760075552014-12-01T15:01:00.003+01:002014-12-01T15:01:18.523+01:00Sheltered living, Christmas and reflection<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">On the 20th of december I'll be signing the
contract for my own living place. This will be a type of temporary sheltered
living for people with autism, where I'll be learning how to live on my own.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">The place is an old primary school, which
has been made into a type of sheltered living. Classrooms are divided in half,
to provide training rooms. Every participant has his/her own training room.
There is a bathroom and kitchen area in there, officially making it a proper
house with our own address. As for the rest of the room, we can put anything we
like in there, since it's our own house. There will also be a shared living
room and washing area (for clothes). During the day there'll be coaches nearby,
ready when we need them.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">There are also a few classrooms that
haven't been divided. Those are studios. Bigger living spaces for people who
feel they're ready to live on their own, but aren't sure yet. They can live as
independently as possible in these studios, but still have coaches nearby just
in case.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I'm very excited to be starting this
training! I'm also very scared. People keep telling me it's normal to be scared
when you go and live on your own for the first time. They tell me everyone has
this when they first move out. I don't think they have nightly panick attacks,
though, do they? Or am I wrong?</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Luckily I got coaches, parents, siblings
and friends to help me. Even though I have these panick attacks, I am still
100% behind this idea. I want to do this!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Lately I've been reading a lot about how
other people with autism experience Christmas. I've actually always loved
Christmas! I love the songs (not too loud though...), the little Christmas
light, all the Christmas decorations, the calm feeling that comes with it... I
love it!</span></div>
<div class="MsoNormal">
<span lang="EN-GB">After reading some stories from other
people and thinking about it a lot, I've come to realise that my family has a
lot to do with that. They've been so very supportive all my life!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I read a story of how someone's kids wanted
to crawl under the table every time, because of their autism, but that the
family didn't like that. I've done this too at my grandma and grandpa's when I
was little, but I remember them simply handing me my plate under the table and
putting down some bowls of snacks under the table. Sometimes other kids would
even join me and play board games with me under the table, because it seemed so
cosy under there suddenly.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Now that I've grown up, I find it easier to
just sit at the table, but I'm also chronically fatigued now and it all costs a
lot of energy because of my autism too. This means that somewhere halfway the
Christmas dinner with my family I sometimes get very tired and need to lay
down. My family knows this and is usually very supportive about it. They show
me the way to a nice bed to lay down on to and they'll go back to the family,
while I nap for about an hour.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I realise how lucky I am with such a
supportive family and through this post I'd like to thank them for that. I've
never had to miss a family Christmas dinner because of my autism or chronic
fatigue, because of that support. Thank you!</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com1tag:blogger.com,1999:blog-6324704498264347705.post-50315348108127943312014-10-09T13:27:00.003+02:002014-10-09T13:27:23.121+02:00New developments! Good news!<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">Yesterday I got a call from one of my
coaches, regarding the foundation that will lead the training for living on your
own for people with autism.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Remember when I wrote about how the
foundation had a lot happen to them, making it unable for them to tell us when
the project will start? If you haven't read it yet, you can find it here: <a href="http://thedailydaysofanasperger.blogspot.nl/2014/09/sick-and-tired.html" target="_blank">Sick and Tired</a></span></div>
<div class="MsoNormal">
<span lang="EN-GB">The coach who called said that... *drum
roll* ... they already got the permits through and they can open up the new
location mid December!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">This is fantastic news. The way things were
playing out, it seemed like it could easily be somewhere halfway through next
year that we could start, if everything went well. This would've been
disastrous for me, as I have an indication for the proper funding for three
years. This year is the first year for that, so starting somewhere halfway next
year would've meant that I would only have one and a half year left of
training, which isn't enough. I would have to try to get them to lengthen the
time of the indication, which would mean a lot more paperwork and mental
fighting for me.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">But that's not necessary anymore! I'll be
starting mid December and will have at least two full years left. After that
we'll see how far I've gotten and what my next step will be. One step at a
time.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I'm so excited! Scared too, of course. It's
a big change and changes are scary, period. But I'm mostly excited! I hope
nothing bad will happen anymore, which causes things to postphone and/or be
uncertain again. Of course I'll keep updating, so you can all follow this
process with me.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-25321541233959996732014-09-29T02:01:00.002+02:002014-09-29T02:01:07.928+02:00Sick and tired<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">"I'm sick and tired of always being
sick and tired." This is what Anastacia sang in her song Sick and Tired
and this is how I feel.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">My whole life has been a fight for getting
the help that I need. As most of you know, recently I've finally gotten the
funding to get that help. I've already got some coaching, but I need more
intensive help. This would come in the shape of a training for people with
autism to learn to live on my own. I'd get my own room and there would be a
shared living space with some other people with autism.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I've gotten a lot of information on the
methods of this training, and it would've been perfect for me! We would start
at the end of October.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">You're probably wondering (if I haven't
told you personally yet) why I'm talking in the past tense. Well, it might
still happen somewhere in the future, but for now it's not. Some things, beyond
the foundation's power, have happened that have caused them to postpone
everything until the papers for the new location, where I would've ended up,
are cleared. They have no idea when this will be, or if it will be at all. They
have assured me, though, that if they can't make it happen, they'll look for
another location.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">This is all fine and dandy, and I'm very
happy with them doing everything they can and with my current coach, but in the
meanwhile I'm still not getting the full amount of help I need. Also, I've been
granted the funding for three years, of which one is already almost over now. I
hope I'll be able to be granted more time...</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I'm not really angry at someone in
particular, as these things are nobody's fault in particular. It's all due to
certain unexpected circumstances. I am angry at the situation I'm being put in
though. But how does one yell at a situation?</span></div>
<div class="MsoNormal">
<span lang="EN-GB">So all I got is a coach to keep things
together and to wait while being sick and tired. And I'm just so sick and tired
of always being sick and tired...</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com1tag:blogger.com,1999:blog-6324704498264347705.post-74121424771985583372014-08-10T16:33:00.002+02:002014-08-10T16:35:03.058+02:00When special needs clash<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">Most of the time I love to be around other
people with autism, or similar diagnosis's. Because we all have special needs,
often very similar ones, we understand each other. You can often count on
people who are going through similar things, to understand your needs and not
judge you for it.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">It also works the other way around. I can
relate to the special needs other people might have and won't easily judge them
for it, as I know what it's like. I'll often quickly recognise what is wrong
and what needs to be changed to make it better for someone with sensory
difficulties, for example, because I have sensory difficulties myself.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">However, sometimes there's a downside to
this. Sometimes special needs clash. This can work in multiple ways. The
first is when you have the same special need at the same time and need someone
else to help. For example, when both me and someone else are paralysed by an
overload of sound, then who's going to lead us away from the sound, or turn the
sound off? We'll both be stuck, not able to help each other. This is a mild
clash. You can also both be stuck in a strong emotion, with nobody to stop you.
This can escalate quickly. However, if you look back on it, you'll probably
know what happened and make up.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">There's a larger clash though, that I find
harder to work with. What if the other person needs something that is actually
something that you can't cope with at all? For example, some people thrive in
not having every step spelled out for them. They love to take life as it comes.
This may lead to some risks, like forgetting to get some accommodations, like
transport to wherever to need to go, having to think of something on the spot.
There are people who like to live that way. It makes them feel alive.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">However, if you're anything like me, this
will stress you out to no end. If you're a person who needs to know as much as
possible beforehand, being with such a loose person can be stressful. This
counts for everyone, special needs or no special needs. But if you have a type
of autism that makes it extra necessary to know as much as possible, then it
won't just be frustrating to be with a free spirited person, but it will almost
be impossible.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">If the other person has another disability,
let's say ADHD, which makes it very hard to live life very organised, then it's
almost impossible for that person to live with the person who needs everything
to be structured.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Don't get me wrong. I'm not saying people
with autism and people with ADHD can't be friends. In fact, there are a lot of
people who have autism and ADHD combined. This all depends on your needs with
your specific disability.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">But these things can potentially make it
very hard to live together.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">One time I was at an autism information
market, where people with autism were allowed to showcase their talents. There
was a person with autism and hyposensitivity (being less sensitive to sensory
input, instead of more), who had a drumming talent. He was great at the drums
and very eager to show it off. This was a problem for a lot of us with sensory
difficulties. We had to protest to this, as it would drive about half of the
visitors out of the building.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I felt very sad and conflicted over this. I
mean, this person with autism had as much a right to be there and showcase
their kind of autism and their talent, as much as the others right? But on the
other hand, do we want to scare away half of the building for one person?</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I understood this person and his needs, but
I also knew that this would be too much for me and a lot of other people there.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">This is where disabilities can sometimes
clash. Someone may need a lot of stimulation, where the other would suffer from
that same amount of stimulation.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">A situation like that can lead to some
heartbreaking moments. Who's needs do you choose at that moment? Do you need to
avoid each other? Is friendship, being colleagues, or even being in the same
room, even possible? What do you say to someone when you really understand
their needs, but their needs are disastrous to you? And what does that person
say back to you?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I've been thinking about this for a while
now, as I've ran into this problem numerous times, especially within my line of
volunteering work.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-8381656830306340672014-07-20T23:51:00.002+02:002014-07-20T23:51:51.652+02:00Fitting in a group<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">Recently I've gone to the training that
I've spoken about. It was a training of two long (7 hours. That was way too
much for me!) days, about how to best put your experience in your field to good
use. I've learned some nice things in this training, that certainly helped me
grow in my volunteering work.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">On the other hand I've had a lot of
struggles with this training. First of all, like I already stated, the days
were too long. I couldn't cope with that, because of my chronic fatigue. This
also made it even harder than usual to get along in the group. The trainers
chose to go for a very loose training style, where everyone could chip in with
their own ideas. When I asked for how long we got and how much they really
wanted to know about my experiences, they said: "Anything you contribute
is fine."</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I tried explaining to them why I can't
handle not having some clear perimeters, and if they didn't set out those
perimeters, that I'd just interrupt them at any time and not know when to stop
talking, which would be very annoying for them, and cost a lot of energy for
me.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">They kept saying: "Don't worry.
Anything you contribute is fine."</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I took those words to heart, so when they
asked what we thought could be some tasks for an experience expert, I asked
"Oh well, I've already done some things as an experience expert and I've
done some research, so is it ok if I chip in here?" They said "By all
means!" so I told them about some tasks that I knew about. Until I got
interrupted by someone saying "Sorry, but... Could you please let someone
else talk for once?"</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I'm okay with someone telling me that I'm
talking too much, since I know that I have difficulties finding the boundaries.
What I dislike is someone telling me over and over again that anything I contribute
is fine, even after I explained what the consequences could be, and THEN not
just being pointed out in a nice way that I talk to much, but actually asking
me if I could let someone else talk for once. That almost seems like I'm being
rude and doing it on purpose to me! This truly hurt my feelings. I felt like I
was as clear as I could be about my disability and the need for perimeters, and
it still wasn't good enough. The rest of the day I hardly dared to say
anything, out of fear of saying too much again. All I was doing was putting all
my energy in navigating the unspoken social cues, making me miss a lot of what
the training was actually about.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">At the end of the training everyone walked
away and I ended up in tears. I was absolutely exhausted, felt alienated and
felt like I wasted my time and precious energy.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">The person who was sitting next to me
during the training also had Asperger's and understood what was going on. She
stuck around to comfort me. The two people leading the training came up to me
to talk to me.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I told them what had gotten me into tears.
They said they understood and that when things would get too much to me next
time, I could just leave the room. This didn't have the effect they hoped it
would have. I didn't feel understood at all! I simply needed a teaching style
with a clearer direction and clearer questions, so that I would know what was
expected from me. Also, I wasn't the only one with this problem, just the only
one with such a strong reaction, so the change wouldn't just be for me. In
fact, there were just two people for who this loose teaching style really
worked.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Rather than having someone walk away when
the teaching style isn't fitting, especially when that person isn't the only
one with that problem, please find a way that that person can join the group
too! Of course, this isn't possible for everyone, in every situation, but I'm
just asking for some more clarity, and it's not for just me. That's not a lot,
is it? Also, we had a small classroom of about twelve people (I'm guessing
here, I didn't count), so there's room for a bit more personalised teaching
style.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">But because there were no clear perimeters,
I kept being busy with trying to navigate the social cues. This took all my
energy, but it was also very clear to the group that I couldn't cope. In fact,
because I was talking so much, I came across as arrogant, instead of helping.
But when someone tells me everything I contribute is fine, and they want an
answer to something I feel like I have an answer to, I don't feel arrogant when
I answer. I feel like I'm helping. Isn't it bad of me to not answer when they
want people to contribute? Aren't I helping by sharing my knowledge? I'd like
the rest of the room to do the same! I can learn a lot from them too! But they don't
seem to see those good intentions. They just don't want to put up boundaries,
but want me to know... telepathically I guess... when and how to answer. If I
don't, I'm arrogant (saying too much) or distant (not saying enough).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I told the trainers this, but they had a
hard time seeing how, giving me time to walk away from the classroom, wasn't
inclusion. Even when I told them that would mean I would be gone most of the
time, not bonding with the group and missing a lot of information. They said I
could just ask the group later what I missed.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">The person with Asperger's, who was sitting
next to me, came to my defence at this point. She told them she agreed with me
that this wasn't inclusion and how much something like this can hurt a person.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">The trainers said they would try to change
some things and "I guess I'll better my life?"</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Now, I have to say... They did make some
changes the next day of training. They had a clear program and adopted a more
clear style of asking questions. This helped a lot and I thanked them for it.
They were happy about it, although one of them still had to make clear to me
how difficult it was for her to do that...</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Why did I write about this? Did I want to
make you angry at the trainers? No, not at all. The trainers honestly didn't
know what they were doing and that's why there are experience experts.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I'm writing about this, because this is
just one example of why socialising in a group can go very wrong for a person
with autism sometimes. This especially tends to happen in classrooms, where
people with autism have to try to navigate unspoken social cues. Because these
unspoken social cues are very unclear, the person with autism might have an
unfitting response. This easily gets misinterpreted, isolating this person from
the group. If this is being spoken about and there's an unwillingness to put in
a little bit of effort, or the person is even being told to 'just walk away',
then the isolation just gets bigger and the misunderstandings have not been
solved. This, sometimes, can even lead to anger and bullying.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">A little bit of understanding, and better
yet, practical help, can often prevent a lot and make life a lot easier.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-91900966066859366222014-05-10T22:19:00.005+02:002014-05-10T22:19:59.916+02:00Squease pressure vest review update<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">A while ago I started using the Squease
pressure vest. To read about what it is and what my first experiences were,
click here: <a href="http://thedailydaysofanasperger.blogspot.nl/2014/01/squease-pressure-vest.html" target="_blank">Squease Pressure Vest</a></span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">By now I've had a lot of chances to try the
vest and to give an update about what my experiences are. I've had some bad and
some good experiences, but in general I'm very positive. I can recommend the
vest if you're experiencing sensory difficulties. I do have to say that my
experiences are my experiences alone. I've seen other people respond
differently to the pressure vest. If you want to be sure if it works for you
personally, then I'd recommend requesting a try-out period. You'll have to pay
a bit for hiring the vest, but it's not that much and if you want to keep the
pressure vest, they deduct that money from the overall costs.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Be sure to try the vest while you're
experiencing sensory difficulties in that time. I have personally not felt much
difference when I was already relaxed, and some other people have reported the
same. So don't judge it yet while you're already in a relaxed state.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">First I want to begin with the difficulties
that I experienced and then I'll head to the positive things, so that we can
end this blogpost positively.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Like I said, the vest does work for me and
helps me calm down. The only problem is, when I use the vest within a group of
people, I find it hard not to calm down so much that I shut myself down from
the group. I find it hard to find a balance.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I have asthma, which sometimes causes me to
hyperventilate. Especially when I'm stressed. When I hyperventilate, I breathe
from the chest (think about how you breathe after you've ran a lot. It's a
little bit like that). When I have sensory issues, I tend to get stressed too.
So when I'm stressed out from sensory issues, I'd like to use the vest to
reduce the stress. But when my asthma is also acting up, the vest just makes it
harder to breathe. Of course I have asthma medications, but those won't help
while I'm still dealing with the sensory issues (= stress). So in these cases
it's hard, and sometimes impossible, to use the vest. I'll have to find another
way to deal with the sensory issues then.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Someone I know, who also has asthma and
sensory difficulties, tried the vest and told me she experienced the same
problems.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Sometimes I don't expect sensory
difficulties somewhere. For example, when I'm going to my therapist. In those
cases I usually don't bring the Squease vest. But sometimes there are
unexpected sensory difficulties, like road workers on the way to the therapist
or things like that. But because of my asthma, I'd rather not wear the vest all
the time, even when deflated. It's hard to decide when to bring it and when not
to.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">POSITIVES:</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I have taken the vest to several places
where I expected sensory difficulties now. In these places, the vest has helped
me tremendously. It was like being wrapped by a plushie calming me down the
whole time. This helped me concentrate during, for example, talking with
someone in a big group of people. It raised my tolerance for certain sensory
issues.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Of course, the vest can't drown out big
sensory issues like a disco and things like that, but when it did help me, was
when something like that happened, I got myself to a sensory issue free place,
and I was still in overload. If I then put on the vest, it helped me get passed
the overload a lot faster. It was a similar effect to when my mother holds me
when I'm crying or something like that. It was very soothing.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Another positive thing is the fact that the
pressure vest is very easy to cover up. The vest is made in such a way that
it's easy to wear it under a normal vest or a sweater. "But what about
when it's warm?" Well, yes, then it's very hard to cover it up. I have to
say though that the pressure vest is very light and thin, so it won't be too
warm. Also, even when people saw me wearing it, most people just thought it
looked pretty cool.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Okay, so maybe the vest doesn't work in
every situation. Is there really something that does help with everything in
this world? That would be amazing, but no, it doesn't exist. But in a lot of
situations it does work and it can make life a lot easier and I think that's
worth it. When I need it, the vest is there. It makes me a lot more
self-reliant and capable of coping with a lot more situations. If you're having
a lot of sensory difficulties, I can recommend the Squease pressure vest.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-43703421272420747892014-05-05T18:13:00.002+02:002014-05-05T18:13:47.259+02:00The future is bright and scary<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">First of all the VERY good news: I got the
funding for the guidance that I need! I can hardly believe it. All my life I
have had to fight to get the proper help, because from the outside I seem like
I can handle everything just fine, while on the inside I had to fight to the
point of falling apart. Now I can finally get the support I need. I'm so happy!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Of course, this means that some new (new...
different... scary...) things have been set in motion. I got a coach who supports
me in a lot of different areas in my life. There have been two appointments so
far. We're trying to have one appointment each week for now and we'll see where
we'll end up. I'm curious to see what will come out of this.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">The place that I have found, where I can
get training for living on my own, is still being build. They expect it to be
done somewhere between September and December. I'm one of the first people on
the waiting list, so when the building is done, I can immediately move in!
That's fast, isn't it? I'm very excited about this! But, of course, this is a
very big change in a small amount of time, which means it is scary as hell. I
have never moved to a different living place before, so this isn't just a big
change, but it's also something new. I have no idea what to expect and am very
scared. It's a good change though. I hope this will help me on my way to
independence and some structured living (= peace of mind).</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I also got someone to help me manage the
funding for the guidance. I'll be meeting him in two days.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">So, those are the first changes that have
been made by using the funding that I received. It's all for the better and I'm
very excited! At the same time I'm very scared. There are a lot of mixed
emotions.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">As for my volunteering work as an autism
experience expert: I've promoted the usage of experience experts of different
kinds towards some coaches and I've helped out at a symposium. I've also gone
to a one day training to improve my presentation skills. This was a lot of fun!
After that I haven't done anything for a month, but that's partly because there
simply wasn't much to do and partly because I've been very busy with starting
up this whole guidance thing. Soon I'll be starting a (longer) training to help
me make better use of my knowledge in the field. I'm always striving to do
better!</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-33573799317791220782014-03-20T02:10:00.002+01:002014-03-20T02:10:25.448+01:00Differences in experience<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">Imagine two mice. One wants to get a bit of
cheese and gets electric shocks when it gets the cheese. The other mouse gets
injected a nice adrenaline rush when it gets the cheese.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">If you were mouse number 1, you wouldn't
want to get the electric shocks. If this goes on for too long, you'd decide
that cheese is a bad thing, because when you get cheese, you get shocked.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">However: If the shocks wouldn't happen
anymore after just a few times, you'd learn that you don't like the shocks, but
that you do like cheese. Cheese without the shocks please!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Now imagine you're mouse number 2. You get
the cheese and then you get the adrenaline rush. Great! You get more cheese and
get more adrenaline. If this goes on long enough, you'd learn that cheese is a
good thing, because it gives you a rush.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">However: If the adrenaline rush wouldn't
happen anymore after just a few times, you'd be disappointed and confused.
Without the rush, the cheese isn't that special anymore. You have learned that
cheese isn't that special, but the rush is. You would try to find the
adrenaline rush somewhere else.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Both mice are of the same species, with the
same needs. Yet they give a different meaning to the cheese, because they
experience the consequences of getting the cheese differently. By extension
they give a different value to the cheese all together.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">I want to show you that when someone
experiences something differently, that person will also give a different
meaning to something.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">If you want to make the first mouse enjoy
the cheese, you have to take away the applying of the shocks very quickly. Then
the meaning the mouse gives the cheese would be right: Cheese is nice, shocks
aren't.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">The second mouse would like to keep the
added consequence. It was an improvement for it, because of the different
experience.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Because of this, it isn't fair to force
people, who process information in a very different way, in regular structures.
Something that can be a nice experience to one person, can be a very painful
experience for a person with a very different way of processing information.
When nobody sees the cause and nobody adapts the structure for this person,
this person will learn that the activity is something to avoid. Even when the
end result of the activity has the potential to be very positive.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">If the painful part in the structure was
removed, then the person would've had the intended experience.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">An example of what I mean can be found in
real life. When there's a concert, they tend to add a loud bass to the music,
as to strengthen the impact. For a lot of people this helps to add to the rush
of the moment and completely enjoy the music.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">However, if you're much more sensitive to
sound, the added bass probably won't be enjoyable, but absolutely painful:</span></div>
<div class="MsoNormal">
<span lang="EN-GB">People who experience the bass as painful,
will most likely walk away from the concert. The people who love the bass, will
like the concert even more.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">If you took the bass away, the people who
are sensitive to sound will probably be able to enjoy the music too. The people
who love the bass, however, will think the concert is boring and walk away.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Because of this reason, it's very harmful
if you force a person with a big difference in information processing in the
regular structures.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Disclaimer: Yes, I realise that everyone processes
information differently and that forcing someone to do something harmful is
always bad. But most people, in general, can find their way in regular
structures (there are exceptions). I'm talking about people with big
differences in processing information, that cause them to not be able to get
along with regular structures anymore. (for example: A person with autism who
might find it hard to get a job, because there is too much sensory input)</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-51515473308352862422014-03-10T00:51:00.001+01:002014-03-10T00:51:22.914+01:00Social confusion<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">In my daily life I often run into, what I
call, social confusion. Social confusion usually happens when there's a subtext
and/or non-verbal communication going on that the other person just expects me
to pick up on, but I'm completely oblivious to it. Then that person responds to
me not responding to something I didn't even know was there. So to me, that
response comes out of nowhere and I'm socially confused, because I have no idea
what just happened to cause that response.<br />
<br />
A few days ago something so very confusing happened, that it left me confused
all day long and even my sister didn't get what was going on. Because this is a
situation that's even confusing for people without autism, I thought it would
make a great example of what social confusion can look like.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">My sister and I were walking around in a
supermarket. There was a lady at the supermarket who gave out samples of a new
type of pizza. Since we were planning on eating pizza that evening, meaning one
of the things we were going to buy was pizza, this was perfect timing and I
decided to try some of that pizza. There were two new kinds. One had tuna,
scampi, salmon and spinach. The other one just had tuna and spinach.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">I walked up to the lady and looked at her,
ready to ask if I could sample one of the pizzas. She read the look on my face
before I could say something and said I could just take one. I took a slice of
pizza and happily took a few bites. I told my sister and the lady that I liked
the pizza. The woman said: "Yeah, that's my fault," continued to say
some more things that both my sister and I couldn't understand (she spoke very
fast and soft), and then took the pizza out of my hands, threw it away and gave
me a new one. I have no idea what happened here, but later my sister and I
thought she probably misheard me and thought I didn't like the pizza.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">With a new pizza in hand, I already got
kind of confused, but decided that it doesn't matter, as I still had a pizza. I
took two more bites, said I liked the pizza again, and then the lady took my
pizza again, threw it away again and gave me a new one. This time she gave me
another type of fish-pizza. After taking yet another two bites, I said I liked
the pizza again. Then my sister and I got confused over which of the pizzas I just
got and asked her. She took my pizza again, threw it out, and gave me a new one.
I started to wonder if this was a prank and if there were some hidden cameras
somewhere.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Absolutely thrown back by this whole
'taking two bites, taking the pizza away, throwing it out, getting a new pizza'
routine, I stopped discussing the pizzas. Even my sister looked at me with a
look of 'I don't know either'. I took another two bites, didn't even go on to
eat more of it, and simply said I wanted to buy that pizza. I liked all the
pizzas, so I didn't even bother to ask which one was which. She gave me the
pizza I just sampled, my sister and I thanked her and then we walked out
completely confused.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">We couldn't get over this for the rest of
the day. The situation was so absurd, that we kept on laughing, being confused
and wondering: "What just happened?!"</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Like I said, this situation would confuse a
lot of people without autism too. But this IS what a conversation feels like
for me a lot of times. A lot of communication is non-verbal and I'm very bad at
picking up non-verbal communication, which means that I'm missing out on a lot
of things in a conversation. Sometimes people expect a response from the
non-verbal communication, but if I'm not picking up on that, then obviously I
won't respond to it either. Because non-verbal communication goes so
instinctively for most people, it's very frustrating for a lot of people if I
don't pick up on it. It even comes across as me not caring about them
sometimes, which is a big misconception. I do care, I just didn't even know
something was going on.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">In my example this woman said some things
that I missed and reacted on it even before I could ask her what she said. She
then continued doing things that made a lot of sense to her, but not to my
sister and me. This is what it feels like when I miss out on non-verbal
communication, which the other person expected me to pick up on. Because I
missed out on a piece of information, to me they suddenly appear to act very
weirdly, while to them it seems to make total sense. This can sometimes lead to
very awkward situations, or even very angry people.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com1tag:blogger.com,1999:blog-6324704498264347705.post-53366938512468670712014-02-19T04:02:00.001+01:002014-02-19T04:52:37.285+01:00Trouble at the hospital<p dir="ltr">Today I went to the hospital to attend a monthly meeting, where people with lung problems (like asthma) can get information on all kinds of topics. I used this opportunity to get information on which lung doctor can best advice me, in combination with my autism. I'm not happy with my current lung doctor.</p>
<p dir="ltr">I found a lung nurse (or however I should translate that) who knew exactly who I would need and she told me exactly where to go and what to tell them.</p>
<p dir="ltr">Confident, because I had very clear instructions and even made notes, I went to the lung section of the hospital and told them that I wanted to change lung doctors and which one I wanted. This woman said: "Woah, hold on there! You can't just change like that!" I told her that, in fact, I CAN do that. She responded by saying I couldn't. I said that even this lung nurse agreed. She said "Really??" and immediately called the nurse, who confirmed what I said.</p>
<p dir="ltr">This got me frustrated. Why are they making such a fuss about me wanting to change doctors and why are they treating me like a very annoying, non-trustworthy person, when I'm asking for something that I'm entitled to?</p>
<p dir="ltr">After this, the lady said my story checked out, but that she still needed a reason for my desire to transfer doctors. I told her I didn't want to give a reason and just wanted to transfer. She said I couldn't just transfer like that. That it's common practice to have a closing talk with the current doctor and to give a reason. I told her that might be so, but I didn't want to and that it's my right to choose so.</p>
<p dir="ltr">At this moment she started saying that I HAVE to provide a reason, as it's their protocol. I got really frustrated at this point and told her that the law dictates that I can just transfer doctors, if I'm not satisfied with my current one, without providing a reason. She said that might be so, but that the protocol says I had to.<br>
My mind was blown. Did this woman just suggest you can make someone do anything, even if it's against the law, as long as it's company protocol?? Ridiculous!</p>
<p dir="ltr">I stood my ground, so the woman said she would go off to check the protocol on this. While she was gone, her colleague proceded with telling me that it's simply protocol and I should just give the reason.<br>
I felt absolutely pressured into doing something I didn't want to do, even when the law is on my side. I also felt treated like a little stubborn child, instead of like an adult who knows her rights. Being group-pressured into having a talk with my lung doctor about everything she did wrong in my eyes, felt terrible.<br>
I started shaking and crying and I knew that if I didn't stop the conversation right there, that I would start yelling at someone. Just wanting another doctor shouldn't be that hard!<br>
I turned my chair around, so that I wouldn't be facing that woman, just to decrease information input. I said "I won't speak to you until my mother is here." Then I called my mum.</p>
<p dir="ltr">I know how childish this might seem if you don't know much about autism, but with autism emotion regulation is sometimes very hard. Recognising the signals on time and being able to remain calm and shut myself off, while sorting the situation in a calm way, is actually big progress for me.<br>
Autism is an information processing disorder and emotions, both mine and yours, are information too. Too many emotions can result in lack of a clear view of the situation. So now you see how actually being able to think of shutting off more input of emotions and calling my mother for help, is a very big step.</p>
<p dir="ltr">My mother was at home (I knew this) and when I called, she rushed over to help. When my mother arrived (we live nearby the hospital, so this didn't take too long) the woman who went to check the protocol also returned. She suddenly told my mum that I could make an appointment with the new doctor without giving a reason, or holding a closing meeting, but that they made a big exception especially for me.<br>
I was glad that I was still not saying anything, unless it was a straight response to my mum, because I wanted to scream: Big exception?! IT'S. THE. LAW!<br>
After we made the appointment and were getting ready to leave, the woman said: "But you know, this isn't just like going to the butcher. In the sense of that you can just go to a different butcher if the current one does a bad job."<br>
Erm, wait what? If my doctor does a bad job, then I can very much so go to a different doctor! It works EXACTLY like that!</p>
<p dir="ltr">My mother and I hightailed out of the hospital, without saying another word to the rude women.<br>
Outside of the hospital, my mother and I just couldn't get over the sheer rudeness of it all and how those women violated my rights. My mother said: "Hold on... Hey, do you maybe want to file a complaint?" I hadn't thought of that, in all the fuss, but yes! Yes, I absolutely wanted to do that!<br>
So we went back in the hospital and went to the complaint department. The women there were shocked as to how we were treated and told us that we were right. That I can just change doctor, without giving a reason. They gave us lots of support and encouraging words, which was lovely of them.<br>
My mother and I filled in the complaint file, thanked the ladies, and went home.</p>
<p dir="ltr">Seriously people, don't forget to stand your ground when you're in your right, just because you're being pressured. Don't ever let anyone pressure you into something that you're not comfortable with and that you don't have to do.</p>
<p dir="ltr">I'm very worried that if they're this firm with me, then what would a less strong person do in this situation? Would another person be set in a situation they don't want to be in, because they're pressured into it? That's why I filed the complaint. This is just an awful way to treat your patients.</p>
<p dir="ltr">Seriously, I can't stress this enough. Stand up for your rights. Your rights are there for a reason.</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-53220021269987434192014-02-02T05:29:00.002+01:002014-02-02T05:29:50.320+01:00The other side of it<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB">While things seem to look up a bit in terms
of getting help and being an experience expert on autism and things like that,
that doesn't mean that I'm suddenly all better. It would be amazing if the
world worked like that, but sadly it doesn't.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Right now I'm feeling that all too much.
While I'm really happy with everything that's going on, I'm also doing new
stuff. Remember: For most people with autism, and for me too, new = scary.
Sometimes people try to protect me from 'new' because of that, but that's not
what I want. With autism it doesn't matter whether you like this new thing or
not. If new is scary to you, then it's also scary when it's something you want.</span></div>
<div class="MsoNormal">
<span lang="EN-GB">Also, there's the uncertainty of it all.
Will I be able to get the funding for the guidance that I need? And if I will,
will I be allowed to keep it, seeing the way the economy crisis is developing?
What will my future look like?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">So yes, a lot of good things are happening.
At the same time I have moments where I start to panic. These moments keep me
out of my sleep. Sleep deprivation makes my day harder, as I already have so
little energy. Still trying to get through the days with less energy, makes for
more days where I cross my limits and feel awful. Pain in my muscles and joints,
dizziness, oversensitivity... Oh yea! Oversensitivity. With autism.
Greeeeaaattt combination. Not really. So all of this makes me even more
sensitive and more likely to panic, causing for the whole circle to start
again. Not even mentioning my asthma yet, which is also a big fan of my panic
attack parties. So my asthma attends the panic party uninvited. The party
crasher makes the, already terrible party, even worse and then it's a big
disaster.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Of course the answer is simple: Take some
extra time to rest to break the circle! Yes, that is the answer indeed. But
this also means that my, already broken, biorhythm, is now completely
shattered, as my body is confused as to which time is the appropriate time to
rest. My body now seems to think that any time is a good time to rest, making
me asleep or awake at the strangest times. This is very hard when I have an
appointment.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">Don't worry, I'll be fine. I've been
through this more often. Like when I was trying to get government profit. I've
always been able to get through it, so I'll be able to do that again. I'm just
writing this down to show the other side of it all. I'm trying to show that
just because things can go really well sometimes for someone, that a disability
doesn't just conveniently go away for a little while, so that you can enjoy it
to your fullest. That's just the way it is.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB">To end on a lighter note: I've been asked
for a few more presentations, so I'm looking forward to that!</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com1tag:blogger.com,1999:blog-6324704498264347705.post-40943362003606567282014-01-29T17:08:00.002+01:002014-01-29T17:08:32.973+01:00Not fair<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">People
regularly tell me that I'm not being fair. I ask others to be clear about tasks
to me, to try and stay calm, to stay true to what they promised, understanding
me and some other things. The unfairness here, is that those are things that I
struggle with a lot. I have trouble keeping organised in my head, and as such
also have trouble verbalizing what I mean in a short and clear sentence.
Because I sometimes have trouble regulating my emotions, I have a hard time
staying calm in emotional situations. My unorganised mind, combined with
moments of hyperfocusing, sometimes has me forgetting about appointments and
things that I promised. My Autism can also make it difficult sometimes to
understand another person's emotions.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">These are a
few examples of things that I need others to do for me, which I have trouble
with returning the favor.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">It's true,
it's not fair at all. I totally agree with you and I wish it was different. I
wish I could return the favor and provide all the things that you're providing
for me!</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">The problem
is that I can't. That's exactly the reason I need you to provide those things
for me. Those things are things that I have trouble with providing for myself.
I need others to keep my head organised and calm and to help me understand the
world and myself, because it's so very hard for me. In some cases even
impossible.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">This is a
hard thing to grasp for some people. "But if you know how hard it can be
for yourself, then why would you ask it from someone else?" My answer to
this is simple: Would you ask a paralysed person to walk, just because he needs
you to push his wheelchair?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">If I was
just as capable of doing something like the rest of you, but just found it a
hard job to pull off, then I wouldn't ask someone else just to make it easier
on myself. That's just mean. But in this case it's a lot harder, and sometimes
even impossible, for me. It's so hard, that sometimes it's making life itself
nearly impossible. Just as impossible as it is for a paralysed person to walk.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">That's why
sometimes Autism can be very unfair, but it's not being mean or lazy. It's that
we sometimes need your help a lot and we thank you from the bottom of our
hearts, even if we can't always express that properly. Thank you!</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com1tag:blogger.com,1999:blog-6324704498264347705.post-47936200838841225332014-01-27T16:45:00.002+01:002014-01-27T16:45:28.174+01:00Finally the right help<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Remember
that I was trying to apply for money for proper guidance? Also, remember that I
got totally lost in all the forms needed to do so, and that I also couldn't get
the information organised on paper properly?</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I'm finally
getting proper help with that!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Let's start
from the beginning, because there's more good news. In the city that I live in,
they started a type of sheltered housing that's just right for me! It's
specifically for people with Autism. First, they'll let me live in a type of
sheltered housing for 2 to 3 years, where they train me on how to take care of
a household on my own. This way, I can get used to the big change, without
having to wait about 2 hours before someone helps me with my panic attack
(which by then has probably already passed, and having all the psychological
damage done already). I can also learn all the household chores with someone
standing right next to me, teaching it to me in a very autism friendly way. The
driving school story probably told you how important autism friendly teaching
is for me.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">After those
2 to 3 years, I would go to live in a 'studio'. This is a one-floor house (at
least, that's what I understood from it). They're rebuilding a school nearby
into 5 of these studios. In this way I can live on my own, but still have the
guidance counsellors nearby, just in case. This is perfect! I don't think I
need intense guidance my whole life, but I don't think I can do it on my own in
one go either. That step is just too big. There are other places with a similar
type of protect housing nearby, but then I'm usually mixed up with other people
with different types of psychological disorders. Having guiding people who are
specialised in autism, just works way better for me. They know exactly what they're
doing!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Now, here's
the glitch. To get that type of housing, I'll need to apply for an even
slightly different kind of fund than what I was applying for. Isn't this just
maddening? I explained that to the people from the sheltered housing and they immediately
understood and got me in touch with someone who specifically helps people with
applying for, and managing, these funds for a living. GREAT!</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">She has
been absolutely amazing for me. She took the time to explain everything that
was going to happen, to me. She then asked me tons of questions and used the
answers to make a report herself. So I didn't have to do that. I only had to
check if I agreed with what was in the report.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I sent her
my feedback with what needed changing in my opinion, and after changing that,
she sent the report to the proper place. About a week later (that was fast!) I
got a letter from the fund-people (CIZ. I don't know how to properly translate
that to English. It's so specific...) with an appointment to have a talk. I
could bring 1 person and I decided upon bringing that person who's helping me
with all this, because she understands this so well! She agreed.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Of course,
this isn't promising anything yet. If it turns out that I can't get the proper
funding, then all of these plans won't happen. Then I'm back at square one. So
don't cheer yet. We're not out of the woods. But it might be a start? And at
least I'm not left to figure this out on my own anymore. Let's focus on that.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com3tag:blogger.com,1999:blog-6324704498264347705.post-36792886292038353502014-01-24T14:52:00.006+01:002014-01-27T16:56:01.094+01:00Squease pressure vest<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">On the 4th
of October I went to the NVA (Nederlandse Verening Autisme. Translation: Dutch
Autism Association) convention. At this convention there were a lot of
professionals speaking on stage and there was an Autism information market.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">At this
information market I tried on a pressure vest. It has been scientifically
proven that deep pressure, like a hug, can reduce sensory input. This is why
these pressure vests have been made. In the crowdedness of the information
market, I could test the vest very well and it really worked! The only trouble
was, that it was too expensive for me.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Later the
company 'Squease' contacted me through Twitter. They asked me to try one of
their vests, in exchange for a review and some help with some little things that
needed to be done. Of course I agreed! I'm very thankful that they offered me this.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Their vest
is slightly different from the one at the convention. The vest at the
convention applied pressure by little balls in the vest that applied pressure
when putting the vest on. This worked great, but was also pretty heavy. This
was meant to put on at the moment there's a need for less sensory input.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">The vest
Squease provided me with, however, has little lines of air pockets. You can
just wear the vest, which is very light, under your clothes. When you're in
need of a relieve from sensory input, you simply pump the vest up (the pump can
be disconnected, so you only have to carry that around in your handbag, or
pockets, or something like that). I have already tried this. Even when it's
pumped up, you can hardly see it through your clothes.</span></div>
<div class="MsoNormal">
<br /></div>
<table align="center" cellpadding="0" cellspacing="0" class="tr-caption-container" style="margin-left: auto; margin-right: auto; text-align: center;"><tbody>
<tr><td style="text-align: center;"><a href="http://www.squeasewear.com/images/ContentImages/6/squease_pressure_vestsv1_1413_794.jpeg" imageanchor="1" style="margin-left: auto; margin-right: auto;"><img alt="" border="0" src="http://www.squeasewear.com/images/ContentImages/6/squease_pressure_vestsv1_1413_794.jpeg" height="179" width="320" /></a></td></tr>
<tr><td class="tr-caption" style="text-align: center;">This is what a Squease pressure vest looks like and how it's used.</td><td class="tr-caption" style="text-align: center;"><br /></td><td class="tr-caption" style="text-align: center;"> Credit for the picture goes to Squease. </td><td class="tr-caption" style="text-align: center;"><br /></td></tr>
</tbody></table>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">For a look
at how the Squease pressure vest works, how they thought of it, or maybe even buy
one, you can look here: http://www.squeasewear.com</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">To write a
proper review, I would of course have to wear it in different situations. This
has already proven to be hard, as it's hard for me to add a new routine to my
day. The new routine that has to be added now, is to remember to put the vest
on before doing something that might provide me with too much sensory input
(socialising, going into the city, parties... things like that). To give you an
idea of how difficult I find this: It took me about 6 years, as a child, to
remember to always put on my glasses before leaving the house.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">So, I hope
I'll remember to put the vest on soon, as there are plenty of occasions on
which I'd like to test it.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I can talk
about one thing already though: Getting the right pressure vest.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">When I
first got my pressure vest, it was a bit too small. It has to be a bit high up,
as you can see on the pictures on their website, but it was even a bit smaller
than that. This caused for it to end up right in the soft spot between your
belly and your ribs. This hurt! It also looked ridiculous, as it made me look
pregnant, because it pushed my belly down.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I stopped
by the office at Squease for a counselling session. They were very nice and
immediately got me the right size vest and adjusted the mid-sections to my
waist (these mid-sections are made of Velcro and can be used to adjust the vest
to your waist size). This felt a lot better! I could immediately feel the
difference, even when pumping the vest up. I tried it under my clothes too and
it looked great. I also got a separate, longer, tube for the pump which I could
use if I wanted to keep my pump attached to the vest, but put the end of it in
the pocket of my regular vest.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I can
advise anyone who wants a vest to make such an appointment first, if possible.
If not, you can also ask for some advise through Skype, e-mail, the phone or
some other type of contact. They're really nice people who are very willing to
help. Asking them really makes a difference.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">So that's
my experience with the vest so far. It fits really nicely now and all there's
left to do is to try it in daily life, and try to get it in my routine to put
my vest on when I'm about to do something that might cause too much sensory
input.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-90608497779648610082014-01-23T00:06:00.001+01:002014-01-23T00:06:19.148+01:00Experience expert!<!--[if gte mso 9]><xml>
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<br />
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I know it
has been a while and that most of you probably thought I have stopped updating
my blog. For a while I was actually considering of doing just that, because I
didn't have much interesting things to say.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">But that
changed! Recently I have started voluntary work as an experience expert for
Autism at 'MEE Utrecht, Overvecht en Gooi'. That's a foundation that supports
people with a disability in all kinds of ways.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">My tasks
will include giving presentations, talk to clients who need contact with
someone who understands them, and test new systems. In the future more tasks
might be added.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Last
Tuesday I had my first presentation. A psychologist gave a training about
Autism and how to communicate with someone with Autism and I was asked to give
a presentation at the end of the training, as to give some insight in how
living with Autism can possibly look like.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Of course I
was very nervous before the presentation. It's something new and new things are
scary, even more so if you're on the spectrum. The people at MEE were
absolutely marvellous in guiding me through this! They gave me as much clarity
on everything that was going to happen as they could. They also helped me with
putting together my presentation, as I was having a hard time with deciding
which things were important enough to include (I could talk for hours about
Autism and still only touch the tip of the iceberg!) and which things I could
leave out.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">The day of
the presentation started in absolute chaos. Because I was so nervous, I
couldn't plan anything at all (and got a bit stubborn and didn't listen to my
sister... Sorry!), which had me running late. Luckily my sister, who I asked to
tag along for support and to maybe also tell a bit at the presentation,
understood and helped me to get everything together on time.</span></div>
<div class="MsoNormal">
<a href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2Zxbn6LvvnCWooO38HQKU7aSp27mhHhO-QwHpR2cL_JpmcMFbmeSYs1DgiWtPvzQjSMyR6yvw6vfGgUAL_Vp7ifDNAZU5LPUZjvpDvF6s6dEPytFz8bkxdInw0NGSHDiRlfx8U3dgSJxF/s1600/Presentatie.jpg" imageanchor="1" style="clear: left; float: left; margin-bottom: 1em; margin-right: 1em;"><img border="0" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEj2Zxbn6LvvnCWooO38HQKU7aSp27mhHhO-QwHpR2cL_JpmcMFbmeSYs1DgiWtPvzQjSMyR6yvw6vfGgUAL_Vp7ifDNAZU5LPUZjvpDvF6s6dEPytFz8bkxdInw0NGSHDiRlfx8U3dgSJxF/s1600/Presentatie.jpg" height="320" width="240" /></a><span lang="EN-GB" style="mso-ansi-language: EN-GB;">When we
arrived at the place of the presentation, we met the psychologist who would
lead the training. She's very nice, understanding and knows what she's talking
about.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">We were
then lead to the room where the presentation was to be held. Soon, we noticed
the room was way too small to fit the amount of people who would be in the
audience. Luckily there was another, bigger, room that was still empty and we
could use it.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">After
switching rooms, we started setting everything up. Then we couldn't get the
beamer to show the presentation. Luckily that was soon fixed by someone who
worked at the location. After it was all set up, it was soon time to begin
and... There was nobody.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">We started
getting nervous. What was all this about?</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Again, luck
was on our side. Someone managed to contact someone who was meant to be in the
audience and we soon learned there was a communication problem. They would
arrive half an hour later. Good, we weren't without an audience.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">That was a
very bumpy start of a first presentation, but hey, it's not like I'm not used
to these kind of things, right? Happens all the time at the events that I help
out at.</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">So I was
soon able to grab myself together again and to greet everyone entering the
room. Then the training started.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">The
training started with having a member of the audience try to have a fake
in-take meeting with me and the psychologist, my sister and me gave feedback.
After that the psychologist gave her presentation.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">We had a
lunch break and then it was time for me to give my presentation. I was still
pretty nervous, but as soon as I was speaking, all my worries disappeared. I
simply told everything that I wanted to tell and I was fuelled by the amazing
questions that the audience asked me! I could tell they were very interested
and the psychologist, my sister and a MEE employee confirmed that the audience
was indeed very interested.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">Afterwards
the audience had to put to practice everything they learned about communicating
with someone with autism in a short conversation with each other, and we gave
feedback again. This last exercise really showed that they learned a lot. We
hit home run!</span></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">One of them
said: "There's so much that I would do differently now..."</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">After that
the training was over and we said goodbye to everyone. While saying goodbye,
everyone shook my hand and most of them thanked me for my presentation. A few
even stopped a bit longer to tell me that they thought my presentation really
struck a cord with them and was really an asset to the training. One of them
told me she had a buddy with Autism and she could recognise a lot of what I
spoke about.</span></div>
<div class="MsoNormal">
<br /></div>
<div class="MsoNormal">
<span lang="EN-GB" style="mso-ansi-language: EN-GB;">I
absolutely loved doing this presentation! Now that I know what it's like, I'm
sure I won't be that nervous anymore the next time and I can't wait until I can
do this again!</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com2tag:blogger.com,1999:blog-6324704498264347705.post-38312643858458643882013-09-24T05:20:00.001+02:002013-09-24T05:20:02.450+02:00GOT MY DRIVER'S LICENSE!!! And an updateI GOT MY DRIVER'S LICENSE!!!<br />
<br />
I kept screwing up, because I had terrible failing anxiety. Then I got myself an exam where they took my failing anxiety AND autism into account (they actually got someone from another city for me, to accomplish that. Isn't that nice of them?) and it helped a lot.<br />
<br />
I'm allowed to drive in my parents' cars (my dad's work-car and our own) and I've already driven around in them for quite a bit around town, so I can get used to driving in another car. I'm slowly easing into it.<br />
<br />
Getting my driver's license is a very big accomplishment for me. Of course, it is for most people, but there's an extra reason for me. I first started driving lessons with another driving instructor. This woman said she was skilled at teaching people with autism to drive a car. Well... She clearly wasn't. She had me do almost everything in a very short time span.<br />
<br />
Then she told me that I had to fill in this form (Eigen Verklaring), in which there are several questions. One of them is whether or not you've ever been at a psychologist and/or had therapy. Of course my answer is yes. This form actually cost me 22 euros. (yes! For a piece of paper!) After that I would be summoned for a screening at a specialist, which would cost me a lot of money too. If he would find me fit to drive, then I would still have to do a medical driving test. IF I got through that test, THEN I would be a allowed to take my exams. Even then I'd just get my driver's license for 3 years max. (This will change starting the 1st of October! I didn't know that back then though) At the end of this all, I would've spent somewhere between 200 and 300 euros and still not be sure whether I'd be able to even get a driver's license or not.<br />
<br />
I told my instructor that I thought that was horrible. A lot of people, including me, who even qualify for such a screening, are also in government profit. This means that they won't have a lot of money. Still they want those people to pay that much, just to know if they're even qualified to take their exam or not! And this is being forced upon them. If they want to drive, they will have to pay that much and still not be sure if they will eventually end up with a driver's license.<br />
<br />
My instructor sympathised and she told me that I should just stop my lessons until I had gone through my medical driving test. Then, if I wouldn't get through the test, I wouldn't have spent that much yet. I asked her if I would be good enough for the test with that few (7) hours of lessons. She said that they would adjust to my level, that they just wanted to know if I had what it takes to even get on the road. Not how far I was in my lessons.<br />
<br />
Relieved, I went through the whole progress (feeling my wallet getting lighter, metaphorically speaking). At the day of the medical driving test, I was told I had to drive there myself with a car that I had to rent from the driving school. Suddenly I was told I had to have the skills to drive the whole car myself, so I had to practice that by driving to the test myself. I asked how for God sakes they could ask that from me, seeing as I had 7 hours of time spent on the road, and there was a lot of time between those lessons and the test too. The instructor told me she couldn't remember having told me that I should stop taking lessons and that I had to face the consequences now. Like, seriously? I wouldn't just stop my lessons for fun, knowing that there would be a test, would I?<br />
<br />
Well, I probably won't have to tell you that I dramatically failed my medical driving test. How was I to make it while having to control things I never learned to control?<br />
I explained the whole situation to the man who was testing me, but my instructor kept insisting she never told me to stop my lessons and the man believed her and told me that it didn't matter anyway. He said that he could see that I couldn't divide my attention (ever tried to do several things you never did at the same time and tried to divide your attention between them without making a mistake? You'll fail. If you don't, you're probably a genius) and that if I can't divide my attention between my car and the rest of the world, I wouldn't be able to drive. He advised me that I would be better off in an automatic car, instead of driving stick.<br />
<br />
I told the man again that I only had 7 hours of lesson time, which isn't enough for me to understand everything enough to divide my attention between them, but that I was sure that when I understood them, I would be able to use everything with much more ease and divide my attention.<br />
The man and my instructor looked at each other and me and shook their heads. I kept insisting that it might even take me a year, but that I would make it. The man said "Well, a year half a half maybe! But even then I doubt it... I think you should try automatic and even then I can't promise anything..."<br />
<br />
Isn't this a very grim outlook? I should drive automatic and even that wouldn't be sure...<br />
I asked my instructor how she could think that she could teach someone with autism how to drive a car. Her response: "I have had other people with autism and they did fine..."<br />
Wait, that was her proof? People, memorize this sentence please: "If you've met one person with autism, you've only met one person with autism."<br />
I got angry and resolved. I went out to find someone who was ACTUALLY qualified to teach a person with autism to drive a car.<br />
<br />
One day I was asked to show my talents at a table at an autism information market. I was in one room with three other people. One of them was a nice woman who was a driving instructor for people with autism!<br />
I wasn't to be fooled again, so I asked what made her qualified to teach people with autism how to drive. She told me she actually had a 'Ster-opleiding' which would literally translate to a Star-education, which is an education to teach driving instructors to teach people with autism how to drive. She told me about the different techniques that she used and what an average lessons would look like.<br />
<br />
I was completely amazed and knew that she was the right person. Just one thing... She only teaches how to drive stick. Not automatic.<br />
I didn't care. If anyone was to drive me stick, it would be her. I took an introduction lesson and after that I immediately knew that I had the right person. She also told me "I have no idea why they told you that you wouldn't be able to drive. Nonsense. It won't be easy, but you're very fit to drive."<br />
<br />
When I re-did my medical driving test, I happened to end up at the same man who tested me before. It had to be faith. This time I was fully prepared and I aced the test. I can still remember the look on his face and it still makes me smile.<br />
I got through my theoretical test in one go too (I did take an individual test).<br />
I didn't get through my exams in one go, but that was mostly due to my failing anxiety. The moment I got a failing anxiety exam, I aced that one too.<br />
<br />
Everyone reading my blog: If people are telling you that you can't do a certain thing based on ridiculous assumptions, and you're sure that you can do it: Do it!<br />
"Then what if I still fail?" Then at least you know for sure now and it won't be a 'what if' situation. But what if you DID make it? Then you wouldn't have someone else telling you what you can and can't do. The person who knows that the best is you.<br />
Advice is a great thing and take it to heart, but nobody can tell you what you can and can't do. Decide that for yourself.<br />
<br />
<br />
As for the update: I got the help that I needed to fill out the form to apply for the money to get the right guidance. I got all the information written down now. It just needs to be made in a good story. Suprisingly, I can write blogposts, but I can't make this story right... People keep telling me I have a low chance of getting this indication, seeing how strict the rules are now, and now my failing anxiety is acting up again. I fear that I write something down wrong and I cheat myself out of the right guidance. This makes me lock up completely.<br />
My psychologist promised she would help me get through that, so next time I'll be bringing the form and all the information to her and we'll be working on that together.<br />
<br />
So yea, I'm making progress. Slow progress, but progress nonetheless.Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com0tag:blogger.com,1999:blog-6324704498264347705.post-58679707117530788372013-06-20T04:35:00.001+02:002013-06-20T04:35:58.316+02:00A mess<p>Hey everyone. I know I keep promising to update my blog more often and then I don't. I'm sorry. It's because my head is such a mess. I'm all over the place. So I'm writing this on my mobile phone, in bed. No obligations in bed.</p>
<p>Life is just getting too confusing for me and it's making me lose track of so many things, even my physical therapist has begun pointing out things in my life that I'm forgetting. No I'm not talking about excercise. She actually remembers who I said I'd call better than me.</p>
<p>This is partly because soon I'll take my driver's exam for the third time and this many exams is draining my money.<br>
But mostly it's because... well... I'm growing up. And I don't seem to cope with it as well as others seem to do, because of my autism and chronic fatigue. I need guidance in finding a living place for my own, for managing my house, managing finances, managing my household, etc. I also need medical care for my chronic fatigue. There are special budgets for people who need that much care. I've been trying to figure out how to get it for a year and a half. I've been to a lot of organisations for that.</p>
<p>I seem to finally understand what papers I need... But I don't understand the papers. I asked the guiding-organisation which I want to hire once I have that budget. They told me I need that budget first before they can help me. It's weird: I need guidance to be able to finance my guidance!</p>
<p>There actually turns out to be an organisation who provides help with such things for free. Yay! So I called them. They said they could come over, but needed some papers from my psychologist first (not the diagnosis paper. I have that. Other papers). I asked my psychologist. She explained to me that the organisation was wrong. They didn't need those papers.</p>
<p>Now I have to call back the guiding organisation to tell them my psychologist said they were wrong.</p>
<p>Oh and all this is just for papers to get an CIZ indication, which apparantly is just something you need in order to be ABLE to apply for the budget I need. So I need help with applying for that too.</p>
<p>Everything in adult life is so confusing to me, that I need help. In order to get that help, I need a budget. In order to get that budget, I need help... and apparantly that help is getting me the wrong information too!<br>
So tomorrow I'll call that organisation again and see what they have to say.</p>
<p>Hey people in Health Care: why are you making people with autism run from stranger to stranger, and overload them with complicated information, in order to get the help that's supposed to make life a bit easier?</p>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com6tag:blogger.com,1999:blog-6324704498264347705.post-69009557612232088492013-05-05T22:51:00.001+02:002013-05-05T22:51:05.782+02:00Answering two question - Second<!--[if gte mso 9]><xml>
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<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">In
my absence from my blog I have had two questions from two different people.
I’ll try to answer them as well as I can. Today I’ll answer the second one. You
can find the first one here: <a href="http://thedailydaysofanasperger.blogspot.nl/2013/05/answering-two-questions-first.html">http://thedailydaysofanasperger.blogspot.nl/2013/05/answering-two-questions-first.html</a></span></div>
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<br /></div>
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<u><span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">When
can we speak of an ‘overload’?</span></u></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">This
is a terribly difficult question, which I have been thinking about for a long
time. To me, this question needs two answers. First, I’ll have to define the
thin line between simply being bothered by any kind of stimulation and actually
having an overload. I’m not an expert, I can’t measure brain activity and I
have no idea if my definition of this thin line is the same as someone else’s.
So this will just be my interpretation.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">The
second part of my answer will need to be an actual definition of an overload.
This answer has the same problems as the first. I’m not an expert, I can’t
measure brain activity and I have no idea if my definition of an overload is
the same as someone else’s. So this, too, will just be my interpretation.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Before
I answer this, I have a question for my readers too: Does anyone know if there’s
some accurate scientific research on this, so we can define this by science
instead of just my point of view? If there is a research on this, please send
it to me, or tell me where I can find it.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Now,
as for the line between simply being bothered by stimulation and having a
complete overload. To me, this is defined by the moment where (any kind of)
stimulation makes you incapable of tuning it out and bothers you with other
activities up to a point where every fibre of your being is telling you to
either get rid of the stimulation somehow, or get out of there. When I say
stimulation, I mean anything that’s bothering your senses. Being it sound,
touch, sight, taste, smell, etc.</span></div>
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<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">The
moment where you feel the stimulation affecting your performance with anything,
then that might be the first sign of an overload coming up and you should
probably search for a way to get away from the stimulation.</span></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Then
there’s the second, and hardest, part of the question… A definition of an
overload. Now, how do you define something that you feel? It’s like having
someone, who never felt hunger, ask how hunger feels. I’ll try my best, though.
I’ll try to do it in such a way that even someone who never had an overload,
may have a sense of what it’s like. Even though I don’t think anyone will ever
really get it without having had an overload. (note: Overloads aren’t just for
people with autism. They just tend to have them more often and sooner.)</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Ever
had 3, or more, people trying to get your attention? You probably couldn’t follow
any of it and yelled out, frustrated, something along the lines of: “One at a
time please!!!” Such a moment is close to what an overload feels like (and also
the reason why some people respond with yelling, or fighting, or things like
that, to an overload. It’s frustration).</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">People
with autism are usually a lot more sensitive to different kinds of stimulation.
Life with autism is life unfiltered. All the different thing in the world enter
our senses at the same time. I remember my biology book telling about how
people can get used to a sound. It said: “If you put on a radio on loud while
trying to make your homework, it will probably bother you. After a while you’ll
probably hardly even hear it anymore.” I can hardly relate with this. Some soft
sounds I can filter. But actual music in front of me? Nope.</span></div>
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<br /></div>
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<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Now
imagine walking through a city and hearing all the sounds (I’m using sound as
an example here, but any other sense, like smelling a perfume, can cause the
same reaction) around you. You can’t filter anything. There’s people talking,
cars driving, footsteps, bicycles, doors slamming, road workers, birds tweeting,
mobile phones ringing, bus passes and traffic light sounds, etc.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">Now
you want to buy a sandwich and you still hear all these things, while you’re
trying to politely respond to the salesman who’s selling you something. At the
same time a baby in the diner decides it’s a good time to start crying. Now
there’s the city sounds, a crying baby and a man talking to you, trying to get
your attention all at the same time.</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">This
is the same sensation as having 3, or more, people talking to you at the same
time. But you can’t possibly tell the city, the baby and the salesman to ‘Shut
up! One at a time!” right? So what do you do? You try to push through and end
the conversation and having to be at that place as fast as you can. Then you
walk out, while being exhausted, but you’re still in the city, which is already
too much. Being exhausted from all the noise, the city is too much too. But you
can’t tell the city to shut up either! Now you have to go home sooner than
expected… You get on the bus, where you can’t even respond to the bus driver’s
nice greeting anymore, as all the city noise is distracting you. Your head
starts to hurt and all you want is to get to your nice and quiet home…</span></div>
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<br /></div>
<div class="MsoNormal" style="margin-bottom: .0001pt; margin-bottom: 0cm;">
<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">I
hope this story nicely explained how an overload works. It’s not exactly a
scientific way of explaining it. The short of it would be: Slowly but surely
you have more and more trouble filtering everything entering your senses. This
builds up, until you can’t take no more and start to have the basic ‘fight or
flight’ survival response. I think the building up is the first warning signal
that things are getting too much and that this signal shouldn’t be ignored. To
me the moment that you resort to the ‘fight or flight’ survival response, is
the moment where you can say you have an ‘overload’. The key is to recognise
the warning signals and reduce the ‘overload-moments’.</span></div>
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<span lang="EN-GB" style="font-family: "Times New Roman","serif"; font-size: 12.0pt; line-height: 115%;">You
probably think “why couldn’t you just explain the whole thing with these last
few sentences?’ Because I feel there’s a difference between knowing something
and understanding something. The story might help to really understand the
feeling of an overload. I hope it worked.</span></div>
Isshahttp://www.blogger.com/profile/02955618448944656231noreply@blogger.com2