A new 13-week social media series begins with the meaningful help of the ALC FASD Changemakers. This collaboration leads to the highly anticipated Vancouver Conference 2024, where both organizations will meet in Seattle. The series is about self-care, which can be defined as numerous different things depending on the person you ask. Instead of promoting the typical, yet still helpful advisories, FASD United wanted to know which self-care and self-compassion practices are genuinely helpful to those with neurodiversity, specifically FASD.
Many people want or know to practice self-care, but sometimes, as numerous Changemakers note, it isn’t that simple. A majority of the ALC say that daily implementation of some type of self-care is what’s best for them and those around them; for many, this comes in the form of showers and baths, quiet environments, talking to support systems, and other sensory-soothing tools. While each member of the ALC expresses the importance of taking care of oneself, multiple feels as though they don’t deserve to do it. This may be because normative accomplishments and tasks are not experienced by neurodiverse brains in the same way, which may contribute to an additional layer of pressure. As Changemaker Kat Griffin advises, “Self-care is not selfish. It is important for you to take care of yourself.”
According to Changemaker Shannon Butt, “Self-care is doing something in the now for your future self that will make things easier for you. Self-care is respecting all versions of yourself past, present, and future, and what they will need in their hard moments.“ Sometimes, though, self-care can mean doing things you need to do rather than want to do. “Self-care for me is opening my mail every time I get a piece, even though a little ball in my stomach and chest tells me that it’s unsafe, I know it’s lying to me. Self-care is spending time figuring these things out.” Figuring these things out can help those with FASD learn regulation tools and decision-making skills.
The senses are a huge piece of self-care for the ALC, and many mention unique ways they implement soothing sensory practices. For example, Jessica Birch says, “I use earplugs in high intensity noisy and bright environments. In high emotional stress, I use aromatherapy to calm my senses and thoughts.” While Kim Doktor adds, “I use my senses. So, my hearing by using brown/white noise, listening to music, and going to a quiet place. I close my curtain to reduce the light in the room or use my sunglasses when I go outside. I use a soft blanket or my weighted blanket.” It is these small, “controllable” aspects of one’s life and day that can promote care and wellness. The senses are friends in times of overwhelm and anxiety, “I try to name a few things that I can hear, starting from the furthest away sound. So perhaps it’s a truck on the highway overpass a few kilometers away, some birds in the distance, someone doing construction in the neighborhood, the neighbor’s music, my laundry, my heartbeat. Then, I pick a different sense… it’s not about judging that thing. You’re just observing,” Shannon Butt importantly mentions.
To help figure out what she needs to do for her health and those she cares about, Shannon sees a therapist weekly, journals, and uses self-reflection. She also utilizes stimming: “I heard that a lot of movement is called stimming. So that’s something that I did before I knew what it was called. I do a lot of rocking back and forth… I also do really well with temperature therapy like standing with the open fridge or holding ice in my hands when the emotions are really high.” Myles Himmelreich agrees, “Another kind of quirky thing that I find helps rocking. I don’t really do it when people are around, but I find sitting watching TV and rocking can be very self-soothing and calming.” Although some self-care practices are non-traditional, they are vital for those with FASD.
Emily Hargrove explains that she “loves the outdoors—breathing fresh air, feeling the sunshine on my face. Truly, this is a source of refreshing. But when I am outside, given the proper season, I love to walk barefoot, to feel the grass between my toes.” Nury van Beers says “I tap my fingers in a very specific manner. I cook something I have never cooked before. I like to be alone and act silly. I ask for understanding and advice when I need it.” While self-care may imply singularity, oftentimes for those with FASD, a fundamental portion of this comes with the help and direction of others.
A prominent theme in the FASD world is the sense of community, and finding people who get it. “I have a very understanding family and support network,” CJ Lutke explains, while Emily Hargrove expresses, “I have to also remind myself that no one is built to burden everything on their own.” Communicating with those closest to you can have a real impact as they learn your quirks and needs. Myles Himmelreich claims, “As it can take me a week or more to process the impact of some things I find talking to someone really helps to lower my anxiety and make sense of what’s going on.” And while human connection is a vital facet of this, animals can be an amazing source of support as well.
“I hug my cat, he is the best companion,” Jessica Birch says. Kat Griffin agrees, “I lay down at some point in the day and have cuddles with my cat.” Anique Lutke adds, “Being around dogs is a form of self-care for me.” There is substantial research that supports animals and their impact on mental health and well-being. For those with FASD, animals hold a treasured place when emotions run high or anxiety and depression arise. So, what hinders people with FASD from implementing self-care into their routines and schedules?
The pitfalls of self-care come in their usual advertisement of products or as something for the wealthy. Practicing self-care is often more challenging for those with less time on their hands. Those on disability may find themselves restricted from certain practices due to their income or health: “I would definitely have more time to practice self-care if I wasn’t worried about making a living. Or if my disability support payment was not below the poverty line,” Shannon Butt says, while Gina Schumaker adds, “Things that can hinder me are life… people demanding from me, schedules too tight, being too rushed.” Sometimes, self-care can mean removing oneself from a place, person, or event to preserve emotional regulation. CJ Lutke expresses, “Not being able to leave a situation or not being listened to when I say I need to leave someplace, and not having the understanding that I am not trying to be rude or disrespectful.” It should be noted that loud, crowded environments tend to have a stronger impact on those with FASD and other sensory-oriented disabilities.
As Emily Hargrove explains, “Panic and a sense of anxiety, in my life at least, can occur in times of being overly stimulated and/or trying to “perform” in a socially acceptable manner… I have to remind myself a couple of things: 1) I am not in danger. I am welcome here. 2) I do not have to prove anything to anyone.” For CJ Lutke, “understanding that everyone on the planet gets stressed or anxious or has emotions too big for the moment. It’s how you deal with them. It’s okay to have those emotions; it’s not okay to take them out on people in a hurtful way.” Taking a break is something many of the Changemakers mentioned in their responses; being able to step away from situations and stress can help alleviate it while giving a calmer, quieter space to do so. “My advice to the up-and-comers would be to allow yourself to say no! You can do it assertively, and it truly is helpful and freeing to not be everything to everybody. Boundaries are something I work on regularly!” Gina Schumaker expresses.
People with FASD, and other neurodiversities may feel the need to mask. However, there are certain tools that can aid in the process of accessing unique forms of care and compassion to allow those with neurodiversity to feel comfortable and confident. Shannon Butt explains that tools like “patience, and changing your inner dialogue” are vital. Anique Lutke asserts, “There is no wrong way of self-care, in my opinion. It depends on what makes YOU feel better. You got this!” It can be difficult to know how to approach self-wellness, but as Myles Himmelreich explains, “Everyone’s self-care may look different and even change throughout their lives.” One form of self-care for one person may not work for another, which is why it’s so important to spend time with yourself learning and practicing.
Mental health and self-care go hand in hand: “Being able to practice self-care is powerful. When you do it, it doesn’t mean you’re lazy or weak. It is like exercising for your mental health,” says Nury van Beers. Anique Lutke explains another way, “I feel it’s like a coping mechanism for our anxiety and depression; it manages our overall mental health in a more positive way.” Those with FASD balance their disability and its needs with their own desires to practice wellness; their thoughts can shape guidelines for others like them, as well as allow learning and respect for all of us.
Stay updated with the Self-care & FASD 13-week series as we finish out the year on FASD United’s social media channels. Interested in the work of the Changemakers? Contact them here.