Monday, 1 December 2014

Sheltered living, Christmas and reflection

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.
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.
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.

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?
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!

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!
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!

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.

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.

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!

Thursday, 9 October 2014

New developments! Good news!

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.
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: Sick and Tired
The coach who called said that... *drum roll* ... they already got the permits through and they can open up the new location mid December!

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.

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.

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.

Monday, 29 September 2014

Sick and tired

"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.

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.
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.

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.

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...

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?
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...

Sunday, 10 August 2014

When special needs clash

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.
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.

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.

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.

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.
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.
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.
But these things can potentially make it very hard to live together.

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.
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?
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.

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.
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?

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.

Sunday, 20 July 2014

Fitting in a group

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.

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."

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.
They kept saying: "Don't worry. Anything you contribute is fine."

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?"

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.

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.
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.

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.

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.

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).

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.
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.
The trainers said they would try to change some things and "I guess I'll better my life?"

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...

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.
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.
A little bit of understanding, and better yet, practical help, can often prevent a lot and make life a lot easier.

Saturday, 10 May 2014

Squease pressure vest review update

A while ago I started using the Squease pressure vest. To read about what it is and what my first experiences were, click here: Squease Pressure Vest

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.
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.

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.

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.

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.
Someone I know, who also has asthma and sensory difficulties, tried the vest and told me she experienced the same problems.

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.

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.

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.

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.

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.

Monday, 5 May 2014

The future is bright and scary

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!

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.

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).

I also got someone to help me manage the funding for the guidance. I'll be meeting him in two days.

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.

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!

Thursday, 20 March 2014

Differences in experience

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.

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.
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!

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.
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.

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.
I want to show you that when someone experiences something differently, that person will also give a different meaning to something.
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.
The second mouse would like to keep the added consequence. It was an improvement for it, because of the different experience.

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.
If the painful part in the structure was removed, then the person would've had the intended experience.

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.
However, if you're much more sensitive to sound, the added bass probably won't be enjoyable, but absolutely painful:
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.
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.

Because of this reason, it's very harmful if you force a person with a big difference in information processing in the regular structures.

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)

Monday, 10 March 2014

Social confusion

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.

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.

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.

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.

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.

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.

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?!"

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.

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.

Wednesday, 19 February 2014

Trouble at the hospital

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.

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.

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.

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?

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.

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.
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!

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.
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.
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!
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.

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.
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.

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.
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!
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."
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!

My mother and I hightailed out of the hospital, without saying another word to the rude women.
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!
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.
My mother and I filled in the complaint file, thanked the ladies, and went home.

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.

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.

Seriously, I can't stress this enough. Stand up for your rights. Your rights are there for a reason.

Sunday, 2 February 2014

The other side of it

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.

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.
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?

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.

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.

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.

To end on a lighter note: I've been asked for a few more presentations, so I'm looking forward to that!

Wednesday, 29 January 2014

Not fair

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.
These are a few examples of things that I need others to do for me, which I have trouble with returning the favor.

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!
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.

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?

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.
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!

Monday, 27 January 2014

Finally the right help

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?
I'm finally getting proper help with that!

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.

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!

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!

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.
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.

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.

Friday, 24 January 2014

Squease pressure vest

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.

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.

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.

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.

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.

This is what a Squease pressure vest looks like and how it's used.
 Credit for the picture goes to Squease.

For a look at how the Squease pressure vest works, how they thought of it, or maybe even buy one, you can look here:

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.
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.

I can talk about one thing already though: Getting the right pressure vest.
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.

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.
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.

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.

Thursday, 23 January 2014

Experience expert!

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.

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.
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.

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.

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.

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.
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.

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.

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.
We started getting nervous. What was all this about?

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.

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.
So I was soon able to grab myself together again and to greet everyone entering the room. Then the training started.

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.

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.

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!
One of them said: "There's so much that I would do differently now..."

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.

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!