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.