Nayeli and Jo talk toileting and ABA
I consider my work to be that of learning about my privilege to best use it to do my part in untangling us from the grips of colonialism. But what is colonialism? Those that know me, know how much I love the power of naming things. Naming helps improve our awareness of something and allows us to develop the ability to explore what that thing means for our selves on a personal and intimate level.
Colonialism is something I have found value in naming. For my understanding, it is the force of systemic, cultural, internal and interpersonal violent oppression that:
- Tries to force people to conform to the dominant culture at enormous expense of self destruction, especially to the parts that don’t fit with the upheld ideal
- Tries to tell me my way of feeling, connecting and being is wrong
- Stripped me and my ancestors of our way of creating and connecting to the earth, universe, our children and each other
- Tells us the way to survive is through disconnection, suppression, isolation and power over others
The intersecting narratives of our lived experiences with colonialism are both personal and shared. When we name this experience we can better recognize its effects and work together to consciously heal. I know that naming this and finding others who have experienced and understand colonialism has given me the power to articulate this force over the narrative of my life so I can move forward in healing myself, my family and the earth.
Once I named and learned more about colonialism, I saw the deeply embedded threads of its work everywhere. I have found myself defeated and hopeless as I have clumsily attempted to pull at every thread I saw while surrounded by people who simply didn’t see what I saw. At times I was causing harm with my efforts. Now I realize that I was missing crucial pieces that I needed to find the names for: self compassion, community, collective wisdom. I want to continue doing this work and I have renewed vigor and hope thanks to hearing from the collective wisdom of a community of people who offered my soul some healing and reconnection. I’d like to offer gratitude to the Institute for the Development of Human Art for their amazing panel for the Decarcerating Care: Community-Based Healing Alternatives +How to Build Them talk. It quenched a thirst I didn’t even realize I was dying from.
Emotional Learning and Teaching
Emotional learning has become a popular topic in our culture. Because of this, emotional learning is being more and more integrated into school curricula with school staff teaching these skills to a wide range of students. My field of ABA has also been jumping on this bandwagon. Unfortunately, the tendency in these education and therapy realms is to focus on feelings like mad, sad and happy paired with real or cartoon faces depicting the emotion. With such limiting and vague words, they don’t come close to capturing the complexity and nuance of emotions, especially when the external presentations of emotions can vary greatly within a culture and even more between cultures. Teaching these skills with a focus on contextual understanding is often missed as well.
“We adults see through biased lenses of adult tolerance levels, adult logic and adult experience and can get it wrong”
Adults often focus on emotions they feel most confident at guessing, which tend to be the more activating emotions seen in the child’s behavior. When adults are helping kids label their feelings, they really are just guessing what that emotion is, based on their own experience as an adult as well as what they see going on around the child in the moment. As such, we adults see through biased lenses of adult tolerance levels, adult logic and adult experience and can get it wrong. Sometimes kids get stuck on one emotion label like “mad” or “sad” and use it for all types of emotions that they may feel strongly or maybe they can only notice the strong emotions and gentle ones are missed. This is often because of what they have been taught from well meaning adults guessing at their emotions. Children can learn to name more complex emotions when the adults around them meet a child at their communication level, vary their communication mode (verbal, written, pictures, AAC, etc.) and expand their own understanding of emotions.
Naming has so many important connections to skills like emotional development, problem solving and self care. When we give our emotions names, it helps us better recognize the emotion when it pops up again and to remember what we need to work with that emotion in the moment. I was recently reading a new book with my children called “I’m Happy-Sad Today” which has a nice take on naming emotions aimed towards kids. The book had some great ideas for doing something I have loved doing with my kids for a few years now: giving personal names to complex emotions. While the book had some focus on basic emotions (happy, sad, mad), it got to the gist of what is important to recognize: emotions can feel confusing, conflicted and messy at times.
Sometimes in my home we refer to feeling irritable as being “prickly” like a cactus. We still love our family and don’t intentionally prick others, but like a thorny cactus, we would like others to avoid us or approach mindfully until we’re feeling better.
“Emotions can feel confusing, conflicted and messy at times”
Another label we have for an emotional state in our house is known as “Pikachu”. This evolved from situations where my kiddo felt crowded by people looking over their shoulder or others just being too close and they’d have an urge to throw elbows to get everyone away. When we first started recognizing these situations, elbows were usually already thrown and there were reprimands and everyone ended up upset. Once we figured out the context of the situation that led to this, we worked together to name it. When the situation came up, we’d remind kiddos to name it and – the most important piece – we respected it as communication for help, no matter what tone was used.
Culture and Language
The focus on naming emotions seems to be one with an English language, westernized bias to it. There are many different languages that have names for nuanced emotions that don’t quite exist in the English language. In Yiddish the word “kvell” means feeling proud of another’s achievements…because feeling proud of yourself is a similar but a different feeling. For me, being proud of a loved one swells my heart so big it may burst but feeling proud of myself has a little embarrassment and relief at being done with a lot of hard work. I never realized this until I learned this word.
“With knowing how much language and culture influences our perception of emotions, we must make sure were meeting someone with cultural competency and respect when helping teach emotions”
When pressed to think of emotions we have personally experienced beyond the basics, we may struggle to come up with examples. Yet if I described the emotion of nostalgic homesick longing for a place you have never been, imagined or real, you may start nodding. More folks may start nodding when I give examples of longing for places like outer space, Hogwarts, or Spain. Perhaps this is a feeling you’ve never stopped to examine and understand until this description. This is a feeling that the German language has a word for: “fernweh”.
Have you ever seen a video of a baby giggling uncontrollably over something delightful like bubbles? Have you ever found yourself so happy for that baby and perhaps watching with a huge grin on your face? A Sanskrit word of having joy in another’s happiness captures that – “mudita” – and now perhaps you’ll notice it the next time you experience this delight.
This is the power of having a way to talk about feelings.
Maybe now you have a story related to one of these emotions and will share it with someone or share this newly uncovered emotion with someone when you feel it. By doing this, you are developing a narrative around this emotion and solidifying it into your understanding for when you experience it. This is the power of using language to name something and giving it a story. With knowing how much language and culture influences our perception of emotions, we must make sure were meeting someone with cultural competency and respect when helping teach emotions.
In fields like mental health, professionals focus on naming emotions as well, but the method of recognizing and naming emotions is far too limiting. We need dance, visual arts, music….ways to feel seen and heard which humans have used since ancient times. Maybe a song can help explain your feelings and needs, maybe a picture or art piece can communicate the sense of a situation. The arts have always been great communicators of emotion and we need to expand the perspectives we have when teaching children how to identify and name emotions along with the story and narrative that accompanies them.
The above photos probably evoke some emotional reactions that are almost certainly personal. If a child with difficulty verbally communicating used one of these pictures to express their emotional state, we’d probably understand what they were going through, especially if we had a good connection and trust with them which is essential to this kind of teaching and learning.
“As professionals, educators and parents, we can raise the bar and change what is standard”
Let’s shift away from the basics and what is easy for us adults when it comes to helping kids understand their emotions. Let’s open up what recognizing and communicating emotions means and teach children emotions can be nuanced, complex, gentle, strong and that there are a rainbow of ways to communicate them. As professionals, educators and parents, we can raise the bar and change what is standard.
Sometimes, as parents we get caught up in what we think the magic of a holiday should look like for our kids. Or maybe we get caught up in creating some sort of ideal experience for our children. But if we take a moment to pause and step into our children’s shoes, we may find that what they like and connect with is different from what we imagine and their preferences may change year to year.
This can be especially true for neurodivergent children. We may notice that as they experience infrequent occasions like holidays, they learn more and more about what they like and don’t like. This experience can lead to emotional overwhelm with increasing anxiety, excitement or a confusing combination of both.
Halloween, especially for neurodivergent children, can be full of difficult sensory situations including unexpected movement, unexpected sounds, crowds, uncomfortable costumes, and scary decorations.
…let go of judgements from other people and really think about your values and what you want your children to learn from these types of situations
Sometimes parents feel they have to justify to others (both strangers and people within the family) the way their child prefers to engage with the holiday. They may make excuses for why they don’t have a costume or why their costume seems inadequate or why they don’t say thank you or trick or treat. I urge parents and caregivers to let go of judgements from other people and really think about your values and what you want your children to learn from these types of situations. Do you want them to self advocate for what makes them feel safe and comfortable? Is asking them to deal with extreme distress for the comfort of others a standard you want to set? Is it about the personal joy of a holiday or is it about something else?
Your child’s neurodivergence is something they should never apologize for
As parents, we are our children’s first window into seeing how to deal with people who have inflexible expectations grounded in nothing but arbitrary rules and intolerance. Do you mutter apologies at rude comments? Do you offer excuses that blame your child? Do you calmly express your values around self care? Do you lash out with defensive “none of your business” retorts? Like many potentially tough situations in life, it is important to think about these things before you are in the hot seat and consider what you want to model for your children. Your child’s neurodivergence is something they should never apologize for.
Regardless of if your child is able to have a vocal verbal conversation with you, you should frequently talk about what the holiday means for your family using words, books, pictures and videos. For some children this may be the first Halloween they will be able to participate in since covid entered our lives, so really consider the meaning behind your excitement about this holiday.
There are many things you can do to better understand how your child feels about Halloween and to help prepare them if they want to participate. Below are some common concerns and questions parents may run into when planning for Halloween with their neurodivergent child and some suggestions to work with your child to help them enjoy the holiday in a way that lets them feel safe.
Costumes can be a sensory nightmare for children with tactile sensitivity. The cloth and tags tend to be extra itchy, extra tight or have pieces that dangle or tickle. Face paint and hairspray is stiff and sticky. If you’re really in tune with your child’s sensory sensitivities in this area and your child insists they would like a particular costume that you think will cause sensory difficulties, explain your reasoning. Show them concretely on the costume the parts you think your child may have difficulty with while also being open to letting them try.
Perhaps purchase the costume and let your child try it on as often as they want to wear it so they can see how they feel about it. If they recognize the sensory problems, work together to find solutions. Use soft fabric, hair ties or scissors to adjust it or maybe reselling it would be a better option. Children often change their minds about what they would like to wear for Halloween. Develop a family rule around time frames for when your children can make final decisions on costumes. Explain your rationale. Perhaps there is a strict budget for costumes and no one wants any last minute buyer’s remorse. Perhaps you have limited bandwidth for costume shopping and need your child to respect those boundaries. Thinking about these issues before October rolls around each year will help you review expectations and rules so no one is surprised and you can develop consistency with your reasoning ready to explain.
Children should get the choice for what they want to wear and put on their bodies
You can help your child think outside the box for Halloween costumes; perhaps they can wear a Halloween themed t-shirt. Consent is also important to remember. Children should get the choice for what they want to wear and put on their bodies. This isn’t an opportunity for you to get to play dress up unless you and your child have a partnership in developing the costume together. Consider what you are modeling if you blow up or pout because your child doesn’t want to participate in your family themed costume idea.
Recognize that your child may not want to wear their costume all evening or maybe at the last minute they decide not to wear it at all. Before you leave the house to trick or treat or attend Halloween events, help them prepare for this possibility by bringing back up clothes to change into. No matter their age, explain your preparation and involve them so they can develop this skill of knowing their own needs and having back up plans just in case it is needed.
Trick or Treating
Decide ahead of time what kind of trick or treating your family is going to do. Perhaps you’re going to go around your neighborhood, a different neighborhood or someplace like a mall or trunk or treat. Involve your children with the decision if possible, but regardless, explain your decision making process. Maybe the streets are too busy in your neighborhood or the weather is poor.
Explain to your child many times in the upcoming weeks to Halloween what to expect where you will be trick-or-treating. Watch videos, read books and talk about what you are excited about. Make sure to go over any rules regularly as well.
Rules such as:
- Always stay on the sidewalk
- Never cross the street without me
- No running in the mall
- We are not allowed to go through the door into people’s homes
- Remember, your body doesn’t like dairy, so don’t get the chocolate or malt balls
Or perhaps with covid you have additional rules:
- Make sure we sanitize between houses
- Don’t ring the doorbell
- We can’t eat candy until we get home
Some kids may have phobias around dogs barking or loud doorbells. If your child seems like they enjoy participating in trick-or-treating but have these fears, ask them if they would like to practice coping skills before the big day. Even if they don’t want to practice, talk with them about how these unexpected things may happen and what they would like to do when they are encountered. Perhaps they have headphones they can put on or a plan to change their mind and leave the house if someone’s dog is rushing at the door.
Other ways to participate (or not at all)
Perhaps your child doesn’t find the idea of trick-or-treating and dressing up appealing at all. As parents we should respect and applaud their self-advocacy. You can offer suggestions of alternative ways to participate such as handing out candy or decorating or perhaps just picking out what others will hand out. Another option could be helping them plan a sensory friendly halloween gathering, which could be an excellent way to practice using executive functioning accommodations. Or maybe your child doesn’t want to participate in the holiday at all and you can offer coping ideas if they find it scary or unappealing such as wearing headphones and teaching them the unspoken rules of Halloween like keeping your porch light off if you are not participating.
As parents we should respect and applaud their self-advocacy
There is an unfortunate trend where parents have their autistic children use blue buckets to signal their autism. Besides the sexist origins of using blue to raise awareness, there is concern in the autistic community about the use of these buckets being used to indicate a child’s diagnosis. There are many factors that come into play including consent from the child for revealing their diagnosis and the fact that it looks very similar to the teal pumpkin children may use for allergy awareness which can actually have life-threatening ramifications.
If your child uses pictures or other physical communication methods, make sure to review the holiday specific language. Practice how they can best communicate using these methods while out and juggling a candy bucket. Make sure to involve your child in the decision of what language and communication they want to use while joining the festivities.
Make sure to involve your child in the decision of what language and communication they want to use while joining the festivities.
There is no actual rule that says a child has to be below a certain age to trick or treat and if your child isn’t ready to participate in festivities until they are older, that is completely fine too! Unfortunately, some people feel that teens and young adults should not trick or treat which takes away from the merriment and feel of the holiday. Halloween is for everyone. If your older child or young adult wants to trick or treat, encourage them to do so while preparing them for any inconsiderate comments and practice this area of self advocacy. If any teens or young adults come to your home trick or treating offer them some candy with a smile and appreciate their joy in the holiday.
Halloween festivities often take place in the evening, which means a lot of excited or anxious waiting time for children. Those can be some pretty big emotions to manage through so remember to be extra patient as you answer “when is trick or treating?” for the 100th time or your child seems irritable. Remember to help them find ways to work through the situation: art, podcasts, squishes or video calling grandma to share how excited they are for Halloween.
Don’t issue threats or ultimatums for rules that they have difficulty following. Decide ahead of time which rules involve safety concerns. For example, running in the street or crossing without you can be a big safety issue, but empathize with the extreme excitement of the holiday. If safety issues become a repeated problem, empathize and make a plan: “I know you’re really excited about trick or treating but I don’t want you to get hurt by any cars in the dark. Let’s do three more houses on this side of the street and then head home. We can eat the candy we have and stay safe. We’ll try to do more houses next year.” If they get upset, again, empathize and don’t tell them not to have their feelings. It makes sense that they are disappointed: “I know it must feel really frustrating. I had so much fun with you and hope to have more fun next year too!”
Finally, reflect on what worked and didn’t work to better prepare for the next year. Talk about it with your child. These are great opportunities to work on self advocacy skills and help your child recognize and cope with big emotions. Check in with your values and family meaning behind the holiday while also recognizing that your child is a separate person from you who will have different opinions, preferences and feelings around Halloween.