Life has been difficult for the last few months. More difficult than usual. It is rather strange that I have to write an essay about emotions at the moment, because I feel as though I have felt every emotion on the spectrum in the last little while. It has been one of those times where you feel life is repeatedly testing you, and you are just grasping for moments of calm. My daughter is autistic and has ADHD. In this house we call that Audhd. She is eleven years old. She had the privilege of diagnosis when she was just two years old. My daughter and I have been working on emotional regulation since she was a toddler. My daughter knew all of the “Zones of Regulation” by the time she was three. (https://zonesofregulation.com/). If you’re not familiar with the “Zones Regulation’, it is a simple, colourful chart. Each emotion has a corresponding colour, and if you feel as though that you are in an emotion that is “too big” then you look at the emotion on the chart and its corresponding colour. Below the colours are actions that will help you to get back into the green zone. Green is the zone that is preferred. Green is calm, serene, not “too much” of one particular emotion. I remember learning the “Zones of Regulation” and thinking at the time, I knew a few adults that could use the chart. This chart has been hanging in my daughter’s room for most of her life and we don’t really have to look at it anymore. My daughter will just say “I’m feeling a bit too excited mom, so I should go for a walk,” or “I am, feeling angry right now so I should go jump on a trampoline or do some gymnastics.” I do not like giving emotions good or bad labels. In our home we are allowed to feel our feelings without labelling them, and we are allowed to talk through them, but we are never allowed to act on impulse while we are feeling “too much” of one particular emotion.
In the last year my daughter and I have been through some substantial changes. We moved to a new city, and she started a new school. I have spent the best part of a decade advocating for my daughter to receive accommodations within the school system. I discuss neurodivergence day in, and day out to educators that do not have any training on the subject. On top of working to keep us fed and housed, and attending school myself, this advocacy can take up far too much time, and can be emotionally draining. Sometimes, and this has been happening a lot over the last few months, the advocacy can leave me so emotionally drained that there is almost nothing left over. I find myself behind with almost everything else in my life because my daughter (and other people like her,) need someone to advocate for them within systems that are not designed for them. When this happens, I feel guilt for everything I am supposed to be doing, but not doing. I feel anger because educating educators is not something I signed up for, but it is necessary. I feel frustrated that the current systems that we have in place are designed for only the one type of neuro-typical person to succeed within. I feel sad, for me, for my daughter, and there is guilt attached to my feelings of sadness. I feel overwhelmed, which can lead me to depression, and there is guilt and self-loathing involved with my depressed feelings. The urgency with which I need to achieve support systems for my daughter leads me to live in a constant state of anxiety, and I have to put time and effort into working on my anxiety and making certain that it does not take over my day-to-day existence. I feel these things all at once. I believe this is what Ben-Zeev’s would refer to as a cluster of emotions and fits within their criteria. (Ben-Ze'ev, Aaron, and Aharon. The Subtlety of Emotions. 2000).
It is important for me to always be emotionally regulated, or to at least fake emotional regulation, not only because my daughter is autistic and feeds on whatever state of being those close to her are in, but because I am advocating for justice. I have learned over the years that if you want a desired outcome, and you are dealing with people, then you always have to ask yourself the question “Do I want to be right, or do I want to be happy?” This question leads me to Part Two, and my insights on affect theory, and how when we label or categorize an emotional response to stimuli then it can limit perceptions.
I have mentioned that I often ask myself if I want to be happy or want to be right. I do this at the start of every single meeting that I have involving advocacy for my daughter. There are times that I want to go into these meetings and scream. I want to sob in the fetal position and never get up. I want to swear, and I want to shout. However, if I had this kind of emotional response to the stimuli of my daughter being all too often traumatized by lack of disability accommodations, or ignorance, or bullying, or teachers sending her into a secluded room because they do not know what else to do with her, then I would quickly be labeled as “an angry mom,” “a pain to deal with,” or any number of derogatory categories that are undeserved. The most difficult part of advocacy when it is directly related to your own child is the remaining not only calm, but friendly to the people that have inflicted the harm on your child. It is a very unreasonable expectation that a mother of any child remains calm and reasonable with the people inflicting harm on their child, but time and time again I have seen outbursts of emotion from other parents that lead to them being labelled “difficult.” So, calm and reasonable I remain because I want the long-term outcome of the situation to be a positive one. It takes practice to sit with feelings, and commit to not acting on them, but doing this usually produces a more favourable end result.
I recently made the decision to pull my daughter from the school system altogether. After years of phone calls, meetings, specialized services, and year after year of educating each grades teacher. After years of repeating myself, providing strategies, lists, tools to help my daughter succeed in this very ableist system, I admitted defeat and started home schooling. I cannot afford to home school; I don’t have the time to home school. I am a single parent with a single income. I was just at a crossroads where I had nothing left in me to keep fighting a fight that I was losing daily. Professor Ann Cvetkovich explains that Affect theory is the “Critical study of feelings – the academic examination of emotional responses to real world occurrences and structures that affect people.” (Cvetkovich, Ann. Studying Affect). I have been studying affect theory without realizing it for a decade now. I have been witnessing an ableist system of oppression (school) having a negative impact on my small family’s emotions and well-being.
In the last three weeks while we have been home schooling our lives have improved dramatically. Sure, it adds a multitude of tasks to my day that I could live without, but my daughter is no longer riddled with anxiety. I have never witnessed her to be as emotionally regulated and calm as she is right now. I give her projects on subjects that she has a natural inclination for, and she is thriving. The biggest surprise for me has been to my own nervous system. I realize now that I have been living in a state of flight or fight for years. Constantly concerned throughout the school day. Waiting by my phone for the school to call me with an emergency. Collecting my daughter at pick-up and watching this ordinarily joyful child be sad, and lonely, and not understanding why the other kids are being mean to her. My heart has broken a thousand times during my daughter’s school career, and even with a broken heart, I have had to remain positive, upbeat, and professional to avoid being labelled, and limit positive outcomes.
It is going to take some time for my nervous system to adjust to this new state of circumstances. I still get a mid-morning panic attack despite my daughter being home, safe, protected. I want so desperately to lean into this new way of being, but I have lived in fear and repression of big emotions for so long that it is difficult to relax. I do not know if I know how to relax anymore. It is not a healthy state of being I am certain, but I have forgotten what it must be like to not forever live in a state of hypervigilance. Within the autistic community, I see many parents being labelled as “helicopter” parents by those with neurotypical children. No parent on the planet wants to be this hypervigilant, but we have zero choice. Many of our children do not see danger where others do, they will bolt across a street without thinking if they are startled by something, and they have no fear. Therefore, we have to be the parents that they need, not necessarily the parents that we thought we would be, or even we would like to be. The judgment of others is a constant issue in our lives. Our normal may look different to another person’s normal, but it is no better or worse, it is just different.
The reason that I am in school is because I want to write about language, and how the pathologizing of language around neurodivergence has negatively impacted the lives of neurodivergent individuals. I have written quite a bit about this in previous MAIS classes, but this subject matter traverses across communities. How we decide to talk about something impacts the way we think about that thing. Labeling emotions falls into this category. If we talk of anger or fear, or jealousy as “bad” emotions then we start to think of them that way. All emotions are part of being human, if we label them bad then we may be inclined to internally fight them, rather than feel them, discuss them, and get to the bottom of them. I am no expert, but in my opinion it is perhaps better to feel emotions as they arise, acknowledge them, sit with them, and try to decipher why we are feeling them. Feeling too much of one thing can of course be debilitating, and finding strategies to cope are necessary, but it has been my experience that if we give good and bad labels to emotions then we can push down our true feelings, bury them temporarily, but risk them showing up in strange ways years down the line because we did not take the time to fully process them.
It is a difficult thing at times to be human. To wrestle with our humanity when we live within systems that have forced us to repress our natural tendencies and instincts in order to fit into socially constructed norms. I often fantasize that we have a collective rethink about the structures and institutions that we have created and I long to start them all again, from scratch. Start all over again, but with more diverse seats at the decision-making table. I am very grateful to my daughter. Despite all of the heartbreak, and knock-backs, and at times lost hope, being my daughter’s mother has changed my perspective on what it means to be human. Being a mother of a child with disabilities makes me question societal norms that until becoming a mother I was on the inside of, looking out as part of that privileged “in-crowd.” How different my life is now, and how carefully I now construct my speech to make certain that I am not just following along. I think it is very possible to open our life experiences and our expectations if we allow ourselves to deconstruct each and every societal norm that we encounter and ask ourselves how we feel about it.
Works Cited
Ben-Ze'ev, Aaron, and Aharon. The Subtlety of Emotions, MIT Press, 2000. ProQuest EbookCentral,
https://0-ebookcentral-proquest-com.aupac.lib.athabascau.ca/lib/athabasca- ebooks/detail.action?docID=3338799. Accessed June 22, 2024
Cvetkovich, Ann. Studying Affect. Carleton University Faculty of Arts and Social Sciences. https://carleton.ca/fass/story/studying-affect/ Accessed June 22, 2024
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