Thank you

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.
Seeing as most of my life revolved around the training, I put a pause to writing.

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.

I decided to stop, to protect myself. Shortly after I went into a big panick attack and collapsed. It was a pretty horrible experience.
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.

But this time it was different.

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.
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.

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.

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.

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.'
Thank you so much!

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.
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.

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.
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.

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!
So I decided to write this.

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.
Keep being awesome everyone.

Moving into my new place

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.

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...

It's all so much!

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.

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.

This is how I felt about moving in last too.

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!

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.

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.

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.

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.

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!

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!

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.

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...

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.

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.