Monday, 14 January 2013

A wonderful day at the swimming pool

Last Saturday me and my sister went to the Tikibad, which is a great swimming pool, with lots of things to do. Now, what is so special about me going for a swim? This wasn’t just any day at the swimming pool. It was an Auti-Do-Day (Translated from Dutch: Auti-Doe-Dag).

An Auti-Do-Day is a day where things like museums, amusement parks, swimming pools, etc. are open only to people with Autism and their relatives and everything is being adapted to make it more accessible for someone with Autism. The Auti-Do-Day is always somewhere else, and this time, much to my excitement, it was at the Tikibad! I always wanted to go there and this was the perfect time to go!

So, what was different at the Tikibad from usual? What did they do to make it more accessible? They divided the day in 2 blocks of 3 hours and you could choose in which time block you wanted to swim. This made sure there were plenty people who could swim on that day, while putting a cap on the amount of people that could buy a ticket. By doing this, it wasn’t too crowded at the swimming pool.

They also had less mood lighting and music on. Besides all of that, they also instructed the personnel at the swimming pool on Autism and had volunteers of the NVA (Nederlandse Vereniging Autisme = Dutch Foundation Autism) walking around. At the entrance of the swimming pool there was a small table with information on Autism and the NVA.

Still, interestingly enough those things weren’t the things that I noticed the most. They certainly helped, though. I wish every swimming pool was like that! But the thing that I noticed the most was the people who were also there. The people with Autism, but also the people who are used to living with people with Autism. The way everyone understood each other without having to explain every little thing and the respect with which everyone treated each other.

Usually when I go to a swimming pool, the thing that bothers me the most are the trouble-making youngsters. Like, when you get into a water slide and someone decides to jump in right after you, instead of waiting for the green light, just to see your startled face.
Or when people can’t wait their turn and cut in line. Or people who just knowingly push you aside in the swimming pool, not caring about you at all, as long as they get to where they have to be.
Things like that can really ruin a day at the swimming pool for me. Socialising, processing all the sensory input and using that much energy is hard enough as it is, without other people who seem to make it their goal to annoy others as much as they can.

Nothing like this happened at the Auti-Do-Day. I’m not saying everything went perfectly. In fact, a lot of things went wrong. But everything that went wrong, was simply a mistake (like me finding out, while changing back into my clothes, that I lost my pants, just to get them back from a nice lady who checked at the lost and found… The shame…). But nobody was cutting in front of the line. Everyone at the water slides politely waited for the green light. Nobody knowingly pushed each other aside. Bumping into each other happens sometimes by accident of course, but this was always met by a “sorry” or someone making some ashamed gesture (not everyone dared to speak to each other, but you could see they were trying to say sorry).

One time I got some chlorine in my eyes (argh!) and went to a sink to wash it out. This nice lady checked why I was taking so long at the sink, because she wanted to use it too, and saw me washing out my eyes. Instead of getting impatient she simply asked my sister “Ah, chlorine in her eyes?” My sister answered: “Yes.” And the nice lady nodded in understanding and patiently waited until I was done.
Everyone was so polite and understanding!

At the end of the day I got a nice hat as a souvenir (and my pants back, haha!) and I was on my way home.
Of course I was still very tired. My Chronic Fatigue doesn’t just go away by making a few adjustments. I wasn’t as tired as I usually am after going to the swimming pool though. My sister though that I’d fall asleep in the car, as I usually do after swimming, but I didn’t! I had a blast, all the adjustments at the swimming pool DID help and the people there were simply amazing, both the volunteers and the visitors!
Thank you NVA for a day I won’t soon forget!

Tuesday, 8 January 2013

Look at me when I'm talking to you!

 This was written about a year ago and was meant as a guest blog on Aaron Likens his blog. He had such a busy year, though, so he had enough to talk about. So he didn't run it. Instead, I'm running the blogpost on my own blog. Enjoy!

That title... Please don't do that to me... Sometimes someone with authority, like my parents (when I was younger), or a teacher or someone like that, wants to be strict with me. In this case they like to say: "Look at me when I’m talking to you!"

After this sentence they usually wait until I actually look them straight in the eye for a few seconds and THEN they start talking. And if I can't keep looking them in the eye while they talk, they'll tell me to look at them again and start all over again!

Now I know this is basic parenting skills that most adults use. I can even see WHY it's being used. It gets the attention of the child, the child knows you're being serious and you're sure that you have the child's attention too.

This is all fine and a very good method actually... Unless you're autistic. Most autistic people have difficulties looking someone in the eyes. This counts for me too. I can look at your forehead, or between your eyes, or somewhere behind you... But looking straight in the eyes? If I force myself, maybe I can for 2 seconds?
But after that I have the instant reflex of looking away and I get very uneasy and very conscious of myself.

When the authority figure tells me to keep looking them in the eye, I usually try to tell them I simply can't, but I'm listening. Some people accept this, others don't. Seriously people, simply ask me to confirm that you have my attention if a situation like this occurs. If you force me to keep looking you in the eyes while you give me a lecture, all you accomplish is bringing me to tears and having even more difficulty hearing what you're saying, because I'm occupied with keeping myself together.

This might not apply to all autistic people. Maybe you have a child who responds really well to this method. Then by all means, keep using this method. But if your child is autistic, or you know someone who is autistic, and tells you he/she simply can't look you in the eye, please ask them to at least acknowledge that they're listening.
Commanding "Look me in the eye when I'm talking to you!" is simply torture if you have problems with looking someone in the eyes. It's not giving a lecture, it's straight out punishing.

Also teachers: If a child tells you they can't look you in the eye. Don't immediately
assume they're being stubborn. More might be going on.

By the way, recently my sister made a joke out of this. She likes to try and look me closely in the eye and laugh when I quickly look away. It’s funny and annoying at the same time! Sisters… Haha!

Friday, 4 January 2013

Start of a new year

A new year has begun. A lot of people ask me how Christmas and New Year’s Eve have been, so let’s start with that. Christmas has been good and bad at the same time. I’ve had loads of fun celebrating Christmas with the family. A big part of the family couldn’t make it, which is a shame of course, but at the same time it also took away the overload I usually have at big parties. Unfortunately I was still feeling unwell and during Christmas dinner with the family my temperature suddenly shot up and I was forced to lay down, feeling terrible, for the rest of the evening. I don’t regret it though, as we did have fun before my temperature shot up.

The dinner table at the Family Christmas Dinner.

Christmas at the Weekly Autism Meeting was fun as well. There was a big turn up of 16 people at the dinner! I was still feeling unwell though, so I didn’t stay for the activities. I’m sorry for that. I hope the activity was a lot of fun.

The weekend after that was mostly spend in bed and on the couch, trying to get better. On Monday I started to feel better, which was a good thing too as New Year’s Eve was coming up and I love New Year’s Eve! I promised to cook (from my new cooking book for people with Autism!) too, so I needed my energy.

A lot of people ask me: “But you have Autism and you’re very sensitive to sound! How in the world can you love New Year’s Eve, with the fireworks and all that?”
One word: Earplugs.
I used to use ear warmers and put the hoodie of my jacket over it. This muffles the sound, taking the sharp edges of the loud bangs off, but still keeping a bit of the sound as to not lose the effect.
This year I used earplugs, which basically did the same, although it was harder to understand what people were saying. I might go back to the ear warmers next year.
Once you get the sharp edges of the explosions out, all you have left is a sky filled with amazing colours, which is simply sensory bliss! So yes, I LOVE FIREWORKS!!!

Every year my parents let me seek out the fireworks, as I love to do that. Getting a budget, asking everyone what kind of fireworks they want this year, then searching for the fireworks that match it the closest within the budget. It’s like putting together a small event! Love it. And I must say, I’ve outdone myself this year with finding the right fireworks. Skyrockets have disappointed us in the previous years. This year I used cakes (basically big fountains), which were much more spectacular! I’ll use them more often from now on. Here is a video my sister made of all the fireworks around us and some of the fireworks I set off.

That’s the end of 2012 then. I’m actually not that sad to see 2012 go. Not everything about 2012 has been bad, but a lot has been. I’ve had to have let go of a lot in that year, like my boyfriend, who’s now my ex, and two jobs.

So I’m done with looking back and it’s time to look ahead. I hope 2013 won’t be this much about losses, but more about gaining. I hope to gain a driver’s license. I hope to gain perspective on my future. But most of all, I hope to gain some more happiness and peace of mind, no matter in what form or shape it comes to me. We’ll see, fingers crossed.

I can’t lie, though. This new year is a scary one to me. I have no idea what it holds and if there’s anything that scares me to death, it’s not knowing what to expect. Of course, you can never really tell what a year will bring you, but usually you at least know you’ll get to find a job, or simply go to your job, or go to school, or something like that… I have no idea about any of that. That remains to be seen. And if there’s anything you should learn about me, it’s the bigger the unknown is, the more stressed out I am. So I am, on the one hand, very hopeful about the coming year, but on the other hand I’m also scared, because I have no idea what to expect.

So yes, there’s a lot of opportunity here, but I’m also scared. Let’s just keep hoping for a lot of good things this year.