Sometimes (almost all the time), I feel like such a bad parent. I’m in bed all day because of my disease and there are so many things I don’t do as a parent. I don’t take my kid to school. I don’t cook. I never take him anywhere, since I can only leave my home during very special circumstances.
But what’s worse than all that is that I can’t handle my own feelings when he’s upset. When certain things happen to my kid, I relive all the times it has happened to me and my world falls apart. When my kid is overwhelmed or when I can tell that he’s not understanding a situation and therefore has a hard time coping, I feel the same way. Sometimes I fake that I’m calm as good as I can, other times his other parent is with him and then I stay in my bedroom and feel like shit.
Because of my disease, I don’t do much parenting at all anymore. I feel guilty and ashamed. I think about my kid all the time and try to solve things like how to find a good school and what not but for too much time, I’m not there.
I’m so sad that I didn’t get a chance to understand myself and learn how to help myself as a kid. Because when my kid is upset, I’m still a kid. Partly because of all the things I never learned as a kid. I didn’t know what it felt like to have your experience validated as a kid. I didn’t have anyone to ask for guidance on how to deal with all the stuff you deal with as autistic. I never felt safe.
I want to comfort my kid when he’s upset but just like me, he runs to his room and slams the door. He doesn’t want to be comforted when he’s too upset and of course, I have to respect that. But since I never allow people to comfort me either, these kind of situations turn into an emotional chaos to me. And I feel lika I’m the worst parent in the world.
Update August 11: Since this post, I’ve done some thinking and partly changed my mind. You can read my following thoughts here and here.
Content: This post mentions anxiety and discusses processing problems and chaos in relation to poor information about disability services.
I’ve been approved for some disability service. It means that somebody will come and do some cooking, cleaning and laundry for me. Earlier today I tweeted about how much anxiety I’ve had ever since I found out that I am approved for this help, and in this post I’ll try to explain one of the reasons – processing difficulties because of lack of information.
This is disability service, or more correctly a symbol for disability service. I will get help with cooking, cleaning and laundry.
I know what kind of services I’ve been granted but, there is information I don’t have about this service. Some of the information I don’t have can be articulated into questions, like “are there time limits for each task?”. However, with most of the stuff I don’t know it’s different. All I know is that there are things missing to create a whole image in my mind, like pieces that connect the known pieces to each other. I know that I don’t understand how this service is supposed to work, but I don’t know what information I’m lacking and therefore I can’t articulate questions about it. The red color in the first picture is like the glue that creates a connectcion between the other pieces – but it isn’t there. The pieces of information I have are like fragments that are not properly attached to each other because of the missing information.
People seem to expect that I’m supposed to understand the information I have and ask about the things I don’t know, but to me it doesn’t work like that. Since there are pieces missing, I can’t process the whole picture and I don’t even understand the information I have. I can process the things I know as individual fragments, but that doesn’t give me a clear picture of what it’s going to be like to get this help. Instead, trying to think about this disability service is like trying to make sense of a chaos. Pieces of information are tumbling around. My brain works constantly trying to process and understand what it will be like to have this help but all it does is draining me of energy and causing anxiety.
I keep thinking about what I wrote the other day, that social interactions are so hard, for so many reasons. One thing that I didn’t mention is that interactions can lead to intimacy, and it can be intense. Too intense to harbor. There’s no way of knowing which interactions that will be too intense, too good, too scary. It just happens, and I’m never prepared.
Honestly I don’t know which force is the strongest, my fear for intimacy or my craving for it.
Intimacy is difficult because I tend to not understand what kind of intimicy I’m experiencing. All I know is that interacting with someone feels good and I want more. I want to be closer. But in which way? That’s not always obvious. Sometimes it’s obvious and comparatively uncomplicated, but all the times when I don’t know what the longing for more of this person is – it scares me. If we met AFK, would I want to kiss you? Touch you? Confide in you? Talk about autism or philosophy? Be comforted by you?
I don’t know. And that scares me. And of course, I don’t know what the other person feels, if they experience any sense of intimacy at all. That scares me even more.
Recently, someone asked me to show myself to them. Not that much, just a piece, but an important piece. So I did. It was scary and energy consuming but oh so good. I want them to ask me for more. I want to ask them for more. But I won’t. This person did probably not understand how affected I was from our interaction and I won’t tell them, because that would be to cross a line I have no intention to cross. I hid behind theories, or maybe theories were what made the intimacy possible. I don’t know. All I know is that the interaction was difficult but felt so good and now I want more.
I don’t know if this is something particularly autistic or not. It makes me feel ashamed and that’s why I’m writing it. After all, this is a place where I write about shameful issues.
Social interaction. Why is it so hard? Or more exactly, what is it that makes it so demanding to me?
My life is filled with people I care about, and I want to interact with all of them. So what’s stopping me? I don’t know. Maybe that I can’t focus on more than one person at a time. Maybe that I have to think very hard and tend to spend energy on thinking about how to behave to not be a burden or annoy the other person. Maybe it’s because dialogues sometimes make me hyper. Maybe it has something to do with that my brain is such a mess and to keep focusing I have to contract every mental muscle as hard as I can to remember what we’re talking about.
It has something to do with my inability to shift focus. I can focus on writing (or sometimes talking), or I can focus on reading (or sometimes listening). But the shift from one to the other, back and forth, feels like running a mental marathon. When I have to shift focus, I don’t parse what I’m reading and thinking automatically.
It’s ironic, the focus shifting comes back in everything.
I read what people write. I ponder. Then I write something but never as an obvious reply. I rarely reply in twitter threads. I read and then I make my own thread.
Sometimes it’s easier. When I get to talk about one of the things that I care passionately about. But then I feel guilty about me taking up too much space. It’s not that I don’t want to know what the other person is thinking, it’s just that I’m not good at articulating questions. I fear that I will ask something that is too private. I don’t want to be the person that violates somebody’s privacy, because respecting boundaries is always more important than a correct conversation.
Of course, it’s also the fear of rejection. I can’t get rid of the gaze that deems me as defected. Nowadays I call myself autistic and I have found other people that are very much like me, but it doesn’t erase thirty years of being wrong.