Hi. I know it’s been a million years since I’ve been here and I promise I’ll talk about why, but first I want to talk about resolutions. An author I like makes Intentions instead because resolutions are things you don’t want to do, which is why you have to resolve to do them, while intentions are things that are fun for you, so you intend to do them. I have kind of a mix this year, so I’m thinking of mine as Resitentions. Here are mine:
- Be in bed by 10pm (most) every night. -Not exactly fun, but I know it will help me feel better and I want to do it.
- Start running again. -Admittedly, starting is not going to be fun AT ALL, otherwise I would have done it already, but I used to enjoy it and I’m putting it in the fun column.
- Eat more real food, less processed food. -The food will be better, but making it is time- and energy-consuming. I’m not always up for it.
- Write 200 words every day. -Not fun, but something I need to do to make it a habit.
We’ll see how they work out. That’s not really what I wanted to talk about today, though.
In a facebook group I belong to, someone posted a meme that really bothers me, so I wanted to talk about it here. I’m not trying to shame the person who posted it or the person who made it. I have wished all of these things myself. Just yesterday I was wishing that I didn’t have to be (or feel I have to be) so hyper-vigilant all the time. I have no aspersions to throw. Here it is:
Image title is Autism Parent’s New Years Resoloution. It lists ten: 1. A full nights sleep 2. A meltdown free day 3. A day off 4. Not having to make separate meals becaue there are only 4 foods your child will eat. 5. Go places and not have to worry about how your child will react. 6. Going anywhere with your child and not fear they will bolt. 7. No waiting lists for services 8. Asking for school supports and getting them without having to fight the school system 9. A day where you don’t have to watch the same DVD over and over 10. Autism awareness for all
The first thing I noticed about this list is that none of the items requires any action from the parent. According to the Cambridge Advanced Learner’s Dictionary & Thesaurus on 12/31/14, a New Year(‘s) resolution is “a promise that you make to yourself to start doing something good or stop doing something bad on the first day of the year.” So, this isn’t a list of resolutions; it’s a list of complaints. There’s nothing wrong with parents blowing off steam and complaining about the tough things in their lives, but let’s call it what it is.
The tenth item on that list is “Autism awareness for all.” I find it ironic that the parent is wishing for people to be aware of autism, presumably to have a better understanding of autism, yet none of the other nine is a wish for said parent to understand autism any better. I’m not disputing that parents of people with autism understand what it’s like to deal with the burdens autism causes, just that they have no idea what it feels like to know you are such a burden to the people you love. To hear it from a parent is a crushing blow. It’s important to be aware of the possibility that a person with autism will see or hear this list and be hurt by it. I know that’s not the intention, but it is a probable outcome.
Another thing the parents of kids with autism know is what it’s like to deal with a meltdown. It can be a nightmare, I know. But something neurotypical parents of autistic people do not understand is what it’s like to be in the grips of a meltdown. To be at the mercy of your environment to the extent that your body and mind rebel and lash out.
I mention being at the mercy of the environment because the environment has everything to do with a meltdown. That’s why #5 in that list bothers me; it doesn’t take into account the stress environment causes an autistic person. An autistic person doesn’t have a meltdown just for kicks or to put someone else out. A meltdown is more like an allergic reaction to something internal, like exhaustion or hunger, or something in the environment. Usually a combination or build-up of both.
I guess what it boils down to for me is that items one through six on that list blame the child for the difficulties. The child. No responsibility for the parent at all here. No responsibility to try to understand what the child feels during a meltdown. No responsibility to figure out triggers and avoid or mitigate them. No responsibility to help the child learn to self-soothe or self-regulate.
I’m not suggesting that the parent in question would not do anything to help the child having a meltdown. The list is a parent blowing off steam, and that’s okay. What’s not okay is to blame the person having the meltdown for the inconvenience the meltdown causes. The autistic person is not having a meltdown out of spite or in an attempt to ruin someone’s day. He or she is having a meltdown because of distress. The autistic person may not be able to communicate what is causing the distress, but that doesn’t make it any less real or valid and it certainly doesn’t make the distress, or the inconvenience caused by it, the autistic person’s fault.
How about instead of wishing we could go places without worrying how our children will react, we wish for more places willing to accommodate our children’s needs.
How about, instead of wishing for a full night’s sleep for ourselves, wish one for our children.
How about, instead of wishing for autism awareness, working toward autism acceptance.
And owning a little bit of that ourselves.
