Being reported as a bad parent to social services

Content: This post is about ableism and the risks of violence that autistic people face.

 

My mom has reported me and my partner to child protection (social services). Her report is full of lies and for now, they won’t do any investigation of us. But I’m not relieved.

There are so many things behind my mom’s actions right now (she’s not well herself), but still, this is the kind of attack I feel like I will never get over. Since this happened a couple of weeks ago, I’ve changed regarding how I act and think as a parent. Instead of acting as if we had lots a time ahead with our kid, I’m thinking that this is borrowed time that can suddenly end at any point. I find myself pondering how I can teach my kid the best kind of strategies to communicate their support needs as if it’s a hurry for them to learn this. Before my mom’s reporting of us I thought that we had plenty of time and this was something that we would work on in a slow pace, but now I think that my kid can be taken away from me without any warning and be placed with people who don’t understand them.

I can’t focus on many other things, so a lot of the stuff I used to care about is being neglected. All I can think about is how I can help my kid to cope as good as possible if they suddenly are picked up by the police and placed with other people. This probably sounds overly dramatic but as a disabled and very ill parent to a disabled kid with a relative who’s actively trying to take my kid away from me, the threat is real.

I wish people could understand how damaging ableism is. That all the negative things you say about disabled people affect how child protection views and judges us. As a disabled and chronically ill parent to an autistic kid who can mask sometimes, people think that I create my kid’s disability with my own “false illness beliefs” (that’s how people think of my diseases).

Where I live, children who are taken away from their parents are very often put in institutions (unless they are very young, like toddlers). These institutions are highly criticized for using violence against children and not understanding their support needs. This means that my kid is in real danger because of my mom and ableism. If people like my mom (who works with autistic children) can think that we’re making up my kid’s autism, guess what a lot of other people also will think? Exactly the same. Framing autistic people as people with a behavioral disorder that can be cured with behavioral therapy has consequences beyond what most people can grasp.

I’m scared. Really, really scared.

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Emotionally Dying

TW: This post includes depression, trauma and internalized ableism

 

I’m dying emotionally. Maybe overly dramatic words but -no. Dying emotionally is exactly what I’m doing.

There’s very little of me left. It’s like I’m fading away, like I’m consumed or used up. I still have happy moments but they are so short and it doesn’t change the fact that there’s very little of me left. I’m the ugly, sticky bottle that you have left when you’ve had a soda. The bottle with the label almost gone because you kept poking and tearing it apart while you were drinking. The only thing left that reminds you of the soda you had is a vague smell and the lingering sensations on your tongue.

It’s not happening because of my disease (Myalgic Encephalomyelitis). It’s happening because I’m denied humanity. Because I’m not getting any ADHD meds, because people refuse ackonwledging that a life can be like this and that people can be humans in the way I am. It’s happening because my childhood memories are catching up with me. Because I’m denied being my autistic self. My dyke self.

I’m consumed because I spent everything that was me on trying to be allistic, and to some extent straight. By trying to do that I lost something that I can never get back, or maybe never had. I’m probably used up because the constant fear got to me. It ate me.

I guess this is one of the reasons why I’m failing so miserably at being close to people (besides from my kid). There is nothing of me left to give. I almost feel like I don’t exist more than as a physical body. A useless physical body that can hardly get out of bed and can’t be pushed inte performing. This description isn’t great but it’s the closest thing I can come up with. I’m gone. There is nobody left.

There’s no need to worry. I’ve been depressed like this before and just as then, I’m fighting to stay alive. The difference this time is that the world around me seems to be thinking that there’s no meaning with me being alive if I can’t leave my bed and since I can’t have long, verbal conversations, I’m denied a lot of healthcare this time.

I need to stay alive for my kid. Not only physically alive, but emotionally too. I can’t be just a shell to my kid, so I’m trying to preserve the tiny pieces of me that still exists.

Shameful vulnerability and the longing for autistic access intimacy

Content: This post includes mentioning of an activity that occurs in a sexual context

 

A while ago I got to try a new medication and even though I’m still very ill, it has a good effect on one of my most problematic symptoms. Now, when my heart doesn’t go bananas and pushes me into a horrible PEM (Post-Exertional Malaise, core symptom of Myalgic Encephalomyelitis) crash that I never recover from every time I feel a little arousal, I can have sex sometimes. Not often, not without it affecting my health, but sometimes.

One of the things that I’ve discovered is that I really like it when my partner strokes my back. My spine used to be very sore but nowadays it isn’t, and that means that the experience of having my back stroked changed radically. It turns me on, but I also like it in contexts that aren’t sexual. This isn’t complicated regarding my diseases, pain and disabilities, it’s not complicated for my partner either so in theory, this is great.

Practically? This was (is) a huge deal for me to admit, both to myself and my partner. This is shameful and just writing it makes me blush and the butterflies in my stomach go wild. Why?

For a couple of months I didn’t at all get why and honestly, I couldn’t really handle thinking about it either. However, it bothered me so much to feel so ashamed and not understanding why that it kept coming back to me. How can it feel so difficult to like having my back stroked? It’s hardly considered taboo or particularly kinky to me. As a matter of fact, I feel way less bothered by a lot of other stuff that I guess I do consider kinky.

Then it dawned on me: It’s about vulnerability. It’s the same thing coming back again and again. Admitting this is a sort of exposure that means acknowledging a part of me that I’m still struggling to deal with and don’t have words for yet. It’s the scared, traumatized part of me that fears being judged for who I am, for my perception and sensory issues. This isn’t just about what feels good, this is about who I am. About having everything that is me rejected, dehumanized and considered not valid. This is about being autistic and connecting with my autistic self, and that is a very taxing thing for me. It’s also something I’m longing for.

My partner is not a judgemental person when it comes to sex, and my fear isn’t that he will judge me for this. This fear is so much deeper, because it’s about taking the risk of not having my sensory experiences understood. My partner can very often understand me on an intellectual level, but I long so hard for the kind of validation I only get when somebody shares my sensory experiences. I guess I’m longing for autistic access intimacy, and – I’m hurting from the lack of it.

A first step towards getting help to deal with my trauma

Content: trauma

 

The other day I started to listen to Come as You Are by Emily Nagoski. When I came to the part about trauma I was thrown into  a very specific emotional space that I have no words to describe. I fall into something dark and scary and the level of fear is horrible.

Because of this reaction, and because of a couple of other things that has happened recently, I did what I have avoided for so long. I took a first step towards getting help to deal with my traumas. I contacted a psychologist and asked a couple of questions in order to find out if she is the right person to help me.

Ever since I did this, I’ve been feeling so ashamed and one minute I hope that the answer will be no because I just want to burry this deep down again. This is followed by me checking my email over and over for a while and hoping that I will get the opposite answer.

One thing that I hadn’t really thought about is that now when I’ve started to put this emotional mess into words in a conversation with somebody else, it feels like I can’t go back. I’ve been craving comfort and safety for a very long time but since I’ve never really talked about it with anybody, it’s been possible to push it back under the surface.

Now, I don’t know what to do.

I do know that if I’m ever again going to try any kind of counseling or therapy, it has to be with someone who understand power and opression. It has to be with someone who understands LGBTQI and disability. It has to be with someone who understands autism, Myalgic Encephalomyelitis and harm caused by healthcare.

I suspect that I’m asking for something that doesn’t exist.

I just want to be allowed to be scared and sad without being brilliant

As I become more and more severely ill with ME, it’s getting more difficult to write. I can’t write that much anymore because it worsens my symptoms too much. Unfortunately, it means that I’m detaching myself from the world more and more, because my only connection with the world is my writing.

I’m thinking about this today, because I want to interact with my friends. I want to but I can’t grasp my thoughts, meaning I can’t say (write) anything analytical or smart. I want to tell people that I care about them, that I miss them, that I value them, but I’m so sad, so ill, so scared and so tired that I don’t know what to do with myself. So much of my social life is built on me saying smart things, and I have nothing insightful to say about anything today. It hit me so hard last night, that I’ve ended up in a situation where I think that I don’t have a right to talk about how hard my life is, and how sad and scared I am, if I don’t do it in an intellectual kind of political or philosophical frame. I’m trying to break free from this idea (that’s why I have this blog, I guess), but honestly, every attempt is making me so ashamed.

It’s not exactly helping that certain people are obviously terrified when I try to allow myself to be vulnerable. Not the people that I consider my friends, but some other people. Even though these are a minority, it affects me really hard. I caught myself daydreaming about being allowed to be sad and scared. It’s… I don’t know what. I’m sad and scared all the time, I’ve been terrified all of my life, and I still haven’t learned to allow myself to be sad and scared without feeling intense shame about it.

I want to write reflecting things about this. I want to write about how ever since I became ill, since it became more obvious to people that I’m disabled, it’s like people are blaming me like hell every time I’m open about how political decisions are making y life hell and how bad I feel because of that. But I don’t have the energy to follow my own thoughts. My head is a mess.

And I can’t even cry.