Gap

My relationship to my partner has been better for the last couple of months, and I’m very happy about that. We have sorted some things out and some external factors have changed and that also seems to make our everyday life easier. However, sometimes I experience some sort of gap between us. Like right in this moment.

There’s too much going on this week. Special things for my kid in school (a small concert and a theme day about human rights) that we found out about very late, meaning, we’re working our asses off to make visual material and prepare our kid. On top of that we have some healthcare stuff for me that my partner need to take me too and preparations to be done before that. My partner has done a big part of the preparation work for our kid because I haven’t been well enough today, so he’s kind of stressed out. I feel bad for not being able to do more but I also feel bad because this is the kind of situation that worries me a lot. Everything has too work smoothly according to our plan, otherwise it’s quite likely that things will be chaotic for all of us. The thing is, things never run smoothly. There will be some kind of problem that needs to be solved and I know that I don’t have the capacity to handle it, but I have to solve certain things because otherwise my kid might end up suffering.

This is not how I prefer to organize things, but this is happening mainly because my kid’s school forgot to inform us on time. Still, we have to solve this situation.

I worry. I need to just focus on dealing with my anxiety. My partner thinks that since he’s doing a lot of the preparation work with our kid, I get to rest since I’m done with most of the preparations for my doctor’s appointment. But I’m not resting. I spend my time planning exactly how to deal with every minute of Monday and Tuesday, trying to predict everything because I don’t have room to deal with any kind of demand that I’m not prepared for. In these kind of situations, I always end up over-exerting myself and that means that I also have to plan for being in a terribly bad shape until Friday.

I’m trying to focus on just getting by the rest of the day. Tomorrow, I’ll be drained of energy from just dealing with the chaos that this kind of tight schedule is causing me, and my partner won’t understand why. It will be a huge gap between us but we’ll be too busy and exhausted to sort things out.

 


As usual, I’m not writing this to get any practical advice and comments including advice won’t be published.

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Open Letter To Autism Parents

This post includes mentioning of ABA, puzzle pieces and functioning lables

 

 

Dear Autism Parents,

We need to talk again. At least I want to talk to you.

Just like you, I’m a parent of an autistic kid. Yes, you probably prefer “child with autism”, but for once, let’s not focus on that. Let’s focus on autistic minds, and what your neurotypical perspectives do to all autistic people around you.

I’m a parent of an autistic kid, and I’m autistic myself. This means that every time you express how angry or sad you are about what you think that autism is doing to you, you don’t only assign blame to your child, you also tell all autistic people of all ages around you that you blame people like us. That you blame the way we react to food and noisy environments, how we process information and how we express ourselves, for causing you discomfort and pain.

You are entitled to your feelings, and so am I, and therefore I will tell you how I feel about your behavior.

Just like you many of you, I sometimes seek out other parents of autistic children in an effort to give my kid the best life i could possibly imagine. I might try to work with you to advocate for more accessible schools and healthcare, because just like you, I don’t want my kid to get PTSD just from going to school. However, I’ve realized that I’m not welcome in your world. When you talk about how autism has destroyed your life, you make it very clear that you are blaming autistic people, instead of focusing on ableist structures. What’s even worse is that you center neurotypical, allistic and ableist views and make me feel ashamed for the way I communicate. I know that you are doing this because you are suffering from knowing that your kid is suffering, but I urge you to think of this: When you are promoting ableist ideas, you are making life worse for your kid and all autistic people. It doesn’t matter how great your intentions are – when you call the need for accessibility “special needs”, when you use functioning lables and when you spread puzzle pieces and refer to autistic people as “mysteries to solve” – you dehumanize us. Dehumanization feeds ableism. We will never have an accessible society that respects autistic people as long as we are dehumanized.

But you know what? There’s another option. You have an autistic child, but you don’t have to see autism as a disaster. It’s totally possible for you to direct you anger and grief to the ableism that’s making life hell for your kid. Because you know – autism isn’t a disaster, ableism is.

I know that it’s hard. Just like you I have been fed all those ableist ideas about autism from healthcare professionals. Just like you I was told that I have to put my kid through ABA, “otherwise he could never grow up”. I’ve had doctors, nurses, psychologists and social workers telling me all those lies about how meltdowns are just a way to avoid demands, that my kid has to be taught not to stim and that putting in a lot of time on behavioral therapies is necessary if I want to give my kid any chance of ever having a good life. But the thing is, none of that is true. You have the option of looking beyond ableist ideas and start paying attention to what autistic people are trying to tell you.

If you decide to start paying attention to what autistic people are saying, you will learn that our lives have meanings. That we connect with each other, we have meaningful relationships and we are able to experience joy and happiness. You will also learn that we are harmed and hurt by an ableist world trying to normalize us, and that will probably not be a pleasant reading to you. When you read about all the violence and abuse we experience, remember that you can be a part of putting an end to it. By refusing the ableist ideas that a lot of healthcare professionals are promoting, and instead listening to autistic people to learn about autism, you can make a difference.

It’s your choice.

Sincerely

the uninspirational

 

Autistic Parenting – Cherising Autistic People and Culture

A bracelet with an orange chewing circle, a yellow fidget spinner and a multicolored tangle.

 

I’ve written about autistic parenting before, both here and on Twitter. Considering how many confusing euphemisms that are commonly used when talking about autism, parenting and related topics, I’ve decided to try to explain what I mean.

As an autistic parent to an autistic child, I parent autisticly. This means that how I’m a parent is strongly influended by the fact that I am autistic AND that my kid is autistic. The autistic parenting, to me, has its core in that we are two autistic people trying to feel as good as possible as autistic people. For instance, I give myself the predictability, visual support, sensory friendly environment etc. that I need as an autistic person, and I give the equivalent kind of support to my kid. Sometimes it’s the same things, like when we both wear head phones. Sometimes it’s created in different ways, for instance,  I use a tangle a lot and but when it comes to stim toys, my kid prefers chewing toys and fidget spinners.

The biggest difference between what I consider autistic parenting and being what’s frequently called an autism parent isn’t that I’m autistic, even though that matters too. The difference is that autistic parenting is about cherishing and appreciating autistic people and autistic culture. I have no interest in trying to make my kid appear allistic and we have no token systems or other ABA-influenced methods. Instead, we have autistic culture. But what does that mean?

As a parent, I introduce my kid to different forms of culture. I got him his first books when he was a baby, I introduced him to a tv show, to different kinds of customs and celebrations, food and so on. When doing this, I try to do it in a way that highlights and celebrates all the autistic culture we have around us. In our home, two of us are selective about food and it’s considered a valid way of being, not a problem. We have visual aids and stim toys in all rooms.  We never have birthdays celebrations with a lot of people at the same time and wearing your softest pyjamas for your birthday party is totally reasonable, because the softer your clothes are the more energy you have to deal with having guests. We have a literal way of communicating and use written and picture-based communication with each other, even if we’re at home and could talk to each other by making noises with our mouths. Predictability and making sure everybody gets recovery time every day is key to our well being, and this is something that permeates how we organize our days.

This isn’t an exhaustive account of what I mean when I talk about autistic parenting, but some examples. To me, it’s important to highlight to myself that our way of living is autistic and as such, it has value. So many people that I have to relate to act as if our way of living is an inferior version of an allistic family, and writing this is simply a way of resisting that idea.

Autistic Parenting – Some Core Principles When Life Isn’t Just Happy Stimming

Since I wrote the last post about how me and my kid hang out together, I’ve thought about all those other times as a parent. Although I think it’s really important to write about the beauty of autistic parenting, I also want to be honest about all those times that are just as important (or maybe even more important), but way harder. I’m talking about dealing with inaccessible schools and healthcare, meltdowns, sleeping problems, when other kids are mean to my kid, when our sensory needs don’t fit well together and so on.

To be honest, this is a very difficult thing to write about. It’s difficult in a practical sense, because there are a lot I don’t want to write about with regard to my kid’s integrity. It’s also emotionally difficult, because these issues are issues that I often feel sad and frustrated about. Being an autistic parent to an autistic kid is by no means always easy. Parenting is demanding in general and the fact that we on top of regular parenting have to fight ableism, and I need to deal with all my own disabilities and my disease, means that life is very hard.

I want to write about some of the difficult parts of parenting. Like hyperempathy – how do I help my kid deal with strong and unpleasant emotions when I get so affected by his emotions? And how do I practically handle having to fix everything to make the world accessible to my kid? Not to mention the underlying and really difficult question: How do I deal with the fact that I won’t be able to protect my kid as much as I want from an ableist world?

I don’t know how to write about this yet. But I can be transparent enough to share some of my fundamental rules as a parent, rules that help me navigate when parenting is difficult. These are:

  • Truly understanding autistic experiences of the world is necessary to be able to give good, respectful support to any autistic person. This understanding comes from spending a lot of time reading about other autistic people’s experiences of the world. (Only relying on my own experiences seems a bit dangerous, I need multiple autistic perspectives.)
  • All support, help and parenting should arise from the idea that my kid is supposed to get the best possibilities to grow as an autistic person. He’s autistic, he will stay autistic.
  • I want my kid to feel safe and loved, as the autistic person he is.
  • Self care, love and having other needs met don’t depend on behaving well. (I rarely talk about behavior as good or bad, if my kid does something that I don’t like I explain the concrete consequences of it. Then we try to agree on another way to do things next time.)
  • Predictability, having sensory needs met, having visual aids and other support systems are a a way of meeting basic needs. It’s not temporary, we will not aim at managing without it.
  • Balancing activities to make sure my kid doesn’t run out of energy is cruicial.
  • Feeling powerless in a difficult situation doesn’t mean that I actually can skip taking responsibility. I might need help to solve something but as the adult, I need to ask for that help. It’s not okay to put the responsibility on my kid just because I don’t know what to do.
  • My kid will thrive as an autistic person when his everyday life is organized in a way that he can handle. This means that adults around him need to provide enough support to only demand as much of him as he has the skills to deal with. Creating a chaotic situation that for instance demands executive functioning that my kid doesn’t have will just cause stress.

Just to be clear, I have no idea if these are rules that will work for other people, or if anyone even understands what I mean with this. These are principles that I use to handle life when parenting is hard. Hopefully, I can write more about the difficult parts of parenting later, when I’ve figured out how to do that.

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.