Autism, June and the Spoon Theory

Several months ago I read about the Spoon Theory, and it made sense to me. Lately, however, it has become clear that it is vitally important that I deeply understand and respect it. Jake is living with a set number of spoons that need to be carefully managed to avoid falling apart.The Spoon Theory was described by Christine Miserandino on butyoudontlooksick.com as a way to help her friends understand how she is living with a chronic illness. It describes how the energy you have for the day with a limited number of spoons. Each activity and interaction you encounter in a day uses up or requires a spoon or two for payment.  

For example, you start the day with 15 spoons. You get dressed, that takes a spoon. You eat breakfast, that takes a spoon, and you brush your teeth. Three spoons gone before you leave for school. Then you socialize with classmates before class, one spoon, follow the teacher’s instructions for the day, 5 spoons, and so on. I imagine that Jake uses about 12 spoons before he gets home from school. It seems that for many autistic people 12 is the standard of all they get. I figure maybe he gets more because he is so young and energetic. Once you are out of spoons you are out, there are no more that day.

I have read from other writers who have expanded this theory to describe how going through particularly stressful appointments or days lead them to “borrow” spoons from the next day, leaving them extra drained and weak. People have described being without spoons leading them to spend the day in bed, to be irritable, to lead to meltdowns or shutdowns, or overwhelming exhaustion.

I get it. It’s a great metaphor. I think anyone can relate. The difference is that I can recharge with some downtime, some prayer time, or even food. I can take a deep breath, sit alone for 15 minutes, and get back to parenting. And I’m pretty sure I have more than 15 spoons a day to work with. I probably truly have at least double that if I am seriously considering.  

Recently, I have noticed that I need to keep track of Jake’s spoons. I need to create downtime for him. I need to allow space for him to rest and not use any spoons. I need to recognize what things cost more spoons for him. For example, he has told me that Monday morning assemblies at school are hard for him because there are so many people there. The whole school, actually. Okay, so he has been going to these assemblies all year. I need to be aware and make sure that Monday mornings don’t require extra spoons and that Monday evenings are easy on him.

Likewise, I need to pay attention to what he wants to spend his spoons on. He has taken an interest in playing baseball lately. He is just developing his skills.  But he wants to play and he wants to try. Baseball is really, really not an independent play sport, though. I need to toss the ball with him. I need to clear my brain and my schedule to make time for that instead of what I would otherwise wish to get done.

As the school year is ending, Jake is exhausted. Wiped out. I can’t get him into bed early enough, and he wakes up still tired. He is low on spoons. In my wisdom, trying to save money on very pricey gluten free bread that we eat a loaf of every two days, I made smoothies for the kids for breakfast one morning last week. You would have thought it was worms in brussels sprouts blended in a cup instead of strawberry cream deliciousness. They hated it. They cried. They argued. They screamed. They refused. They tasted and declared it disgusting. Jake took an hour to drink about three sips. By the end of this misadventure, I was exhausted. They were a mess. Jake was starving and trying so hard, and he just could not drink it. Frustrating does not seem a strong enough word.

In retrospect, bringing in a new food in June, when he is already low on spoons, is a bad idea. He could learn to love smoothies, I am sure, if he was rested and there were no demands on him that he knew he had to face that day. The pressure was just too much. He had to drink a breakfast that he was unfamiliar with on a school day when he was going to have to go be around people, pay attention, and follow rules all day. The meltdown was pretty epic. I also felt like melting down. But I am the adult, the neurotypical, the mom. So I stuffed down those tears and promised myself that one day, far, far in the future, it would be a story that makes me laugh instead of cry.

I have been working very hard on a visual schedule for this summer. It’s my hope that if I put a lot of effort into preparing it well, I will be able to use it regularly and for a long time without a lot of effort daily. I want using it to become routine. I’m digging into my teacher mode to make our home less stressful and a place that requires fewer spoons. I am realizing, as I do this, that I need to schedule down time daily for Jake, and also weekly. I need to be able to tell my friends, no, today is not beach day, perhaps you could join us at the playground instead. This goes against my flexible and social nature but does appeal to my love of organization.

I was reflecting with my sister today that while I could say that I want to learn to be able to say no, what I really need to do is own my yeses and my nos. I need to be clear about my priorities (Jake, Aiden, and Penny, and the sanity of my household) and pick what I want to do based on that. So what I need to be is okay with saying no. I do it, but then I have guilt and try to make up for it. I’m also trying to own the things I say yes to. Because usually I say yes because I feel like I should. And no to what I really want. That seems a little confusing.  

The idea is, routine, simplification, and being picky will bless my family more that spontaneity or extra social time in the summer. Not that we can’t be social, I just have to watch the spoons and the routines and make sure Jake can handle it. I need to embrace that, remember my motivation, and own it.

If you are one of those people who gets some of our spoons this summer, the best part is, you have read this and know how treasured and expensive those spoons are. You will be understanding if Jake needs time alone or to rest, and you will appreciate the time we have together. That is the biggest beauty and meaning of the Spoon Theory. It brings people into what someone with autism or chronic illness is going through and builds compassion, understanding, and appreciation of the time you have together.

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