Dear mom in the supermarket isle

Dear mom in the supermarket isle,

I see, and hear, you there with your child on the floor, who is having a meltdown.
You catch me staring at you with a very frustrated look in my eyes. You look back with a look on your face as if wanting to say: "What? Stop judging me. You have no idea what our story is. Try it for yourself for a day..."

But I do understand. I really do. Because you see... That look of mine wasn't meant for you, or your child. It wasn't a stare of disapproval, even though my highly annoyed face clearly looked like it.
You see... You don't know my story either. Don't worry I'm not angry at you for it. In fact, I sympathise. Of course you'd think I was judging from my stare.

But I have autism. And your child is causing a high sensory overload.
Maybe your child has autism too, and the sensory problems the supermarket causes is what caused the meltdown.
I understand. I really do. I had a meltdown in a supermarket last year too, and I'm an adult. Other times I know how to keep it in 'till later, but I do understand how your child is feeling. It's all so overwhelming.

But I can't stop looking so frustrated. You see, my sensory overload that your cjild is causing me is pushing me to the point where there's only so much that I can do to not start having my own little meltdown right next to your child. And then you'd have two people to take care of.
I can't keep my frustrated look away, because from the inside I'm exploding. That frustrated look is already me holding back.

At this moment I have to stop shopping, wether or not I have everything I need, pay for my groceries, and get to the car as soon as possible. In the car I'll have my own meltdown, all by myself. I won't be able to drive home until all of that is processed.

Mom in the supermarket isle... You don't have to worry about me. I'll be fine. Tend to your child.
All I wish to accomplish is to say sorry for making you feel judged all the time, and I hope that you read this and the next time you see me staring, you'll consider the posibility that I might simply be sensory overloaded, instead of judging you. Maybe then you'll feel less judged. Maybe.

Mom in the supermarket isle, I'm sorry for making you feel this way every time. I hope this letter can make a difference.

Sincerely,

Your autistic friend who really does understand and care, even though it doesn't always look like it.

New diagnosis

I am just going to say it outright: I have Crohn's disease.

Now, before you get all panicky, hear me out.
I've been walking around for many years with bowel problems now. Doctors didn't take me seriously. Some tests were done, but never proper tests by specialists, so nothing specific came forward and my pediatrician wouldn't do any more tests or refer me to a specialist, even though the problems never fully disappeared. They only flared up every once in a while.

That is, until last year. Suddenly I had 6 stomach flues in 9 months and after that all my symptoms worsened. In hindsight I'm guessing the stress from the unfitting coaching and training caused Crohn's to flare up.

I had several visits to my pediatrician, until she finally referred me to a specialist (to check me out. Not 'cause she suspected anything specific). This specialist soon had a suspicion, which thorough testing and a colonoscopy confirmed: Crohn's disease.

But my response was mostly (not a 100%, I did have a few tears at some point) one of relief. This surprised many people and had some even question if I even understand the nature of the disease. So I'll explain myself.

Yes, I do understand the nature of the disease. I've been told by the doctor that I have only 2 inflamed spots, no blockades, cysts or other such things. This makes it mild at the moment.
The doctor told me that if the medicine catches on (we'll see in time), he expects I'll be with minimum symptoms and I can switch to a medicine meant to simply maintain it.

Seeing as I first had a diagnosis (chronic fatigue) that simply meant "We have no idea what it is, or where it came from, or what to do about it. Just accept it." and now I have a diagnosis that goes "We have no idea where it came from or what it might do in the future, but we know exactly what it is and we got many possible treatments" I actually feel like I made a step up!

Ok, now for the serious, darker part. I read online that 3 out of 4 Crohn's patients need bowel surgery at some point. This scared me and is what caused the tears at some point. I started doubting if I was indeed taking this too lightly and asked about this on a Facebook group for patients with Crohn's disease. They said I was right to be happy about having a diagnosis and having it be mild. They did also say that Crohn's disease is different for everyone and can just randomly turn around at some point. But when and if this moment is ever to happen, nobody knows.

They say that some people with mild Crohn's live their lives almost symptom free, and others feel fine one day, and suddenly need to be taken to the hospital the next. And everything in between.

They said that because the future for Crohn's disease is so unpredictable, I might as well enjoy it while I still have mild Crohn's disease and not worry about the future too much.

This is why I'm mostly relieved. No, I'm not without grieve. The possibility of bowel surgeries in the future does scare the heck out of me. But I can't just focus on that, as it will absolutely destroy my life. So instead I focus on what is now. And what is now?

Now I have a diagnosis AND treatment AND a possible future with minimum symptoms, where first none of these things even existed.

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...