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Being neurodiversity-affirming outside the Instagram bubble

Updated: Jan 15

Sometimes I feel so safe, supported, and encouraged by the like-minded neurodiversity-affirming parents and professionals on Instagram, I forget we still have a ways to go with our advocacy outside the Instagram bubble. This weekend we went to a birthday party- and if you know, this could go one of two ways- it could go fine OR we could get there and R could refuse to leave the car. We prepped- we talked about the birthday party and who would be there, kept the rest of our morning routine consistent, and brought our AAC device and phones for screen time. We pulled up to the park and the amount of people and stimulation at the park was overwhelming even for me. My husband and son entered the party first and socialized while he helped my son on the playground. I chose to stay with my daughter and ease into the party at her pace. Rushing this process could lead to a meltdown if rushed. This is usually our go-to strategy at social events since I also, struggle with gatherings and often enjoy taking social breaks so she and I usually stick together at these things. It took about 30 minutes of sitting by the car and watching the party then she wanted to join. She still requested my phone so she could watch/ listen to her songs while breaking into the playground. She started exploring while carrying my phone around like a security blanket of sense. She used non-verbal communication to request for me to take her shoes off- I did so because I know the extra sensory stimuli on her feet provides the input she's seeking to stay regulated.

I caught myself wondering what other parents were thinking about my parenting or worse my child- how I could let my child carry around a screen when she's supposed to be out at the park playing like all the other kids. How I could set a bad example and let her be barefoot- won't all the other kids want to do the same? Am I making it harder for them to set and hold their boundaries? While pondering, I saw a little boy walk by with his family, chewy around his neck, happily toe-walking around the park. I was reminded I wasn't alone here even though I felt so alone at that moment. I stopped myself and my thoughts right there. I told myself I will not force my child into distress by removing the screen or masking for the comfort of others- even myself.

People may not understand autism or why my child plays, communicates, or interacts with the world in the way that she does and that's okay. I watched her balance and climb the rock wall phone in hand happily singing and playing by herself. I thought to myself- so what if it's different than the way other kids play? So what if a screen and no shoes make this experience enjoyable for her- she's not harming anyone and allowing her to do these things makes playing at this very busy park accessible to her. Without them, she certainly would have refused to go into the park at all- which I know would have been a loss at her expense because I know how much she loves to climb and play at the park.

Maybe letting go of the fear of judgment and supporting my child will encourage another parent to feel empowered to do the same. Maybe some other parent on the playground will see the way my daughter plays and communicates and thinks "I'm not alone here either". Maybe someone will comment and open the door for an opportunity to educate. Whatever the reactions may be, I decided then and there my advocacy stands as firmly in real life as it does on Instagram even without the safety net of like-minded peers.

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1 Comment

Daisy McVay
Daisy McVay
Jul 12, 2023

This is literally like reading about my little one. And my own mom brain too. Carrying her device around to hear her songs like a security blanket is exactly now I’ve described our little purple kindle fire. Thank you for writing.

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