What We Do

A while ago I wrote a post about how I tend to feel like a bad parent, mostly because of the disease that makes me unable to to a lot of parenting stuff. Since then I have thought a lot about it and realize that even though I don’t do a lot of the stuff that I think of as parenting, I do other things with and for my kid. To help my memory along the next time I feel like an absent parent, I’m going ot publish a list of some of the things we do together.

So, here it goes.

  • We chill in my bed with an iPad/phone/computer each, headphones on and indulge in our interests. Every now and then my kid interrupts me to show something he has written or a picture he’s been drawing.
  • I tuck my kid in at night. Put on his duvet, make sure all toes are covered (a ritual that he loves). Then we say good night in three languages.
  • We look at pictures and movies, both from when he was younger and more recent ones. He’s learning how to search among pictures and movies using keywords on my computer and loves it.
  • We write. My kid writes short stories on his ipad (or sometimes on a computer) and I write my stuff. Recently he started to care about spelling so now he’s asking me how different words are spelled and I have to try to explain different spelling rules in English and our first language.
  • I create visual supports of different kinds, and my kid is always involved in this. He gives me input by telling me how he understands pictures for instance, so I can create schedules, instructions and illustrations of different kinds that help him.
  • We make illustrated stories about things that are going to happen, things that have happened and things that my kid wishes for. We use a special app where we combine drawing, pictures, text and record talk.
  • We read together. The more severe my ME has become, the harder it is for me to read out loud but sometimes I read to him, other times he reads to me.
  • Stim. We color stim by blending colors in my drawing app (SketchBook), and look at things with nice, deep colors.
A red infinity symbol with traces of blue, yellow, green, pink and purple. The background is light blue with a hint of green. The picture is painted to look almost like clouds.

 

This list is by no means exhaustive and as a parent I do a lot of things that are more boring and not obvious to my kid, like planning different things with my partner, preparing for different events, arranged an assessment of my kid’s hypermobility and so on. But the list above is a good reminder of that I actually do spend time with my kid and I am his parent.

My way of parenting doesn’t fit the idea I have of what parenting should be, and it makes me doubt myself as a parent, but I need to remind myself that I do what I can considering being quite severley ill in ME, bedbound and housebound. I don’t parent in a conventional way, but I can give my kid something that I didn’t get: Space to explore and be his autistic self.

A Bad Parent

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.

Lacking Information and Processing Problems

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.

A red rectangle with black. and white images inside it picturing cooking for someone, cleaning and a washing machine.

This is disability service, or more correctly a symbol for disability service. I will get help with cooking, cleaning and laundry.

The rectangle is now grey, but the black and white pictures are still there. Around them questions marks have been scattered.

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.

Same grey rectangle but now the pictures of a washing machine, cooking for somebody and cleaning have been tossed around so they are tilting and look like they are just scattered around together with question marks.

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.

Let Me Decide If It’s Worth It

As a person with a bunch of chronic conditions I’m sometimes told by so-called experts that I should do fun and meaningful things, even if it leads to a worsening a symptoms. This is especially common among healthcare professionals who work with people with chronic pain. People who advocate this approach to dealing with chronic pain seem to think that the positive outcome of doing something meaningful will be greater than the pain, and that will make it worth it. Avoiding things that trigger more pain is called avoidance or fear and is for some reason always considered irrational.

I wonder how much damage this idea has done to me. Even though I have never really believed it, it has affected me. It has made me think that there is some piece of truth in it. It has made me harm myself.

Yesterday I met with a friend and her kid. It’s the first time in a year that we have met. Actually, it’s the first time in a year that I’ve met with any friend away from keyboard. The circumstances were made to be as gentle to me as possible: I took breaks and rested, my partner did all cooking and practical stuff, we were outside in the garden to keep the noise level with two kids down. We had a great time. Still, I feel so bad today. My tachycardia is worse, fever is up, pain is increased. My sensitivity to light, noise, movement and moving visual impressions is horrible. I can’t brush my teeth because my muscles are too weak and sore to hold my electrical toothbrush. I can’t be in the same room as my kid. I can’t be outside. I’m isolated in a bedroom with curtains down, needing help with almost everything but can’t tolerate to have people around me.

I had a great time yesterday, but was it worth it?

No. It wasn’t worth it. It wasn’t worth this.

I knew I was going to pay for seeing my friend and her kid, but I thought it was going to be worth it. I don’t know exactly how I was thinking, because I knew I was going to pay by feeling like I am today. There’s no surprise going on here. So why did I think it was going to be worth it?

Because a part of me still can’t let go of the ideas planted in my head by healthcare professionals who have no clue about how bad many symptoms get when I exert myself. I know they are wrong but I want to believe it. I want to believe it because I don’t want to have reached the point where I only see my kid, partner and healthcare professionals AFK. But it seems like I have.

How does it come that so many healthcare professionals seem to think that their job is to make people accept our situations by over-estimating our capacity and pushing ourselves, instead of learning to truely accept the limitations we actually live with? How does it come that these people, who brain-washed me into thinking that harming myself is a good thing, never have to take any responsability?

I know the answers to these questions. I just have a hard time believing that it’s true.

 

(Update: With ME the thing where healthcare professionals push us to over exert ourselves is especially bad because we don’t always recover, we risk permanent harm. I’m well aware of this but just realized that I don’t make it clear in the post.)