Updates 2021

February 2021

I have re-written this post a few times already. I’ve been too frustrated to write about this and not sound bitter. Well, maybe I still sound bitter, but hopefully not too bitter. I feel a lot better now.

Life has a way of never working out the way you want it, no matter how much you plan and prepare for it. I am not saying things are always bad, quite the opposite actually, sometimes things are even better than you could have imagined. This is unfortunately not one of those times.

As you may know, I’ve been struggling with the support we get – therapists, caseworkers and all sorts of other people. I feel like there’s not a lot of understanding about people like me out there in the real world and very often others try to force the help they feel is best on us and ignore what we say we need – it’s like they don’t even hear what we say, sometimes.

I will make one thing very clear. I know best what support is helpful to me and what is not. Support is there to make life easier, to help us interact and exist in a world that isn’t structured for people like us. If I say something is making my life more difficult, then that’s it. It doesn’t matter what other people believe.

I kept thinking, these last two months, that everything would work out and that I should be open to getting support, because I know I need it. Now I finally understand that in this case, I am better going at it alone. So, I declined any further help and even though a lot of things are now definitely more challenging and difficult, I feel better. The thing is, life is always going to be challenging and difficult if we are different, that won’t change. It’s my approach to it that I can change.

Now, this isn’t the best option for all of us and I have received amazing support and help from the people who were supposed to help me, which is why I can confidently say no now. I know the right kind of help for me is out there and I won’t accept the wrong kind just because it is labelled as support.

When I started culinary school all my routines fell apart. I had quite a few meltdowns because I was trying to force the help that wasn’t helpful into my life and that made everything – every lifesaving routine I had set up to get through this – fall apart. Now, I am finally able to start rebuilding new routines and making time for the things that make me happy.

It is essential to make time for the things that make me happy, because when I feel good my filter gets stronger and I suffer less from my hypersensitivity. When I feel bad, my filter gets thinner and thinner until it breaks.

Online school is far more difficult for me than I thought, even though some things are easier as well. I think, perhaps it’s not just that it is online, but that it is completely unstructured, and they change meeting times, breaks, classes and assignments constantly while claiming that they have given us structure by saying school is from 9.00 – 14.00 o’clock every day.

If only that was true. There are days we start at 8.00, some days at 10.00 and there are days we end at 16.00 or later – exceptions, they call it. They can’t tell someone like me that classes are at the same time every day and then change the time several times a week. I need routines and structure to function and I am not getting it.

One of my solutions have been to get up at 5.30 in the morning. That way I have time to create a set of routines every morning that are not affected by how early or late classes are.

By getting up this early I have time to do things that make me happy too, so even though it’s really difficult getting out of bed, it is helping me get my routines back and I need that.

So, yeah, I had a lot of plans for this blog, but I don’t have the energy or time that I thought I would have and that means I can’t work on the blog as much as I wanted. I am getting better day by day, though, and hopefully I will be able to work more on the blog as time goes by. If not, then it’ll just take a bit longer than expected. What a wonderful thing it would be to do this all the time! Maybe one day.

I hope you guys are all doing well and staying safe.

Kai

Life with Autism Spectrum Disorder is not always easy, but it doesn't have to be impossible. Since I was diagnosed myself, I have been trying to raise autism awareness and share my own experiences and thoughts about life as well as my search for a happy and fulfilling life.