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!