This article first appeared on the author’s blog, Coming to My Senses, and is reprinted with permission.
As a delayed-diagnosis sensory adult with Sensory Processing Disorder (SPD), one of my greatest pleasures is helping newly diagnosed children with the same condition, whether this means championing their parents or explaining sensory issues from the inside. We SPD adults and teens have the words to convey how it feels to be mid-meltdown with traffic barreling down on us, or mid-bite as we desperately hunt for input, and so we’re not unlike camp counselors or big siblings. We must protect even the tiniest members of our community by speaking up on their behalf.
What I’d say to your child is not necessarily what every single adult in the community would say. Our experiences, although similar, are unique and varied.
Hi New Friend,
Let me ask you something: How do you feel when things are very bright, loud, smelly, strong-tasting, crunchy, moving, or touching your skin? Do you feel happy and want more? Do you feel scared and want to run away? Do you not even notice these things? Well, guess what, these things are not in your imagination! You’re not dreaming how you feel, and you’re not making it up, even if you’re the only one in the room going, “Eeew, my hands are dirty!” when everyone else also has dirty hands.
[Image description: The photograph shows a young light-skinned child with strawberry-blond hair showing the palms of two dirty hands.]
Many people, even grown-ups like me, feel the same way as you. And guess what? The way you’re feeling has a name! It’s a big name. We call it Sensory Processing Disorder, but you can call it SPD, like Silly Penguin Doctors.
Paging Dr. Penguin
[Image description: The image shows a drawing of a penguin wearing dark sunglasses and carrying a gray medical box with a red cross on it.]
Know how some people are tall and some are short? And some have brown eyes and some have blue eyes? And some have big feet and some have small feet? Well, people have different brains, too. Some brains are built in a way that make us especially sensitive to things that make you sensitive — like when the light is too bright at school, or you can’t stop hugging your mom for even a single second. Guess what? My brain is just like yours! We could be twins, you and I. Don’t we look exactly the same?
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It’s totally okay to be different. Different doesn’t mean good or bad. It just means that there is no one way for things to be in this world. How boring would life be if we were all the same? What if everything around you were the color green? Green people, green sky, green eggs and ham. (I’m okay with that last one — haha.) But really, it would be so boring. Different people with different experiences bring fun new ideas into our lives and keep things interesting.
I like to think that people with SPD bring lots of wonderful things to the world. Because we’re so sensitive, we sometimes see things that other people don’t even notice. Have you ever noticed that a friend was sad before they started to cry? Or did you ever think that someone needed you to help them before they asked? Many people with SPD are like little sink sponges. We drink up information about things around us, including people’s feelings.
[Image description: The picture shows a circular yellow sponge with a happy face in the center.]
We notice some of the smallest details about our world that other people don’t stop to notice — even if these things feel uncomfortable in our bodies. It’s no fun to be uncomfortable, I know. I hate it, too. Our brains don’t always tell us the truth about sounds, sights, tastes, touches, smells, movements — and sometimes, we get more scared than we need to be because our different brains are telling us to worry. The good news is that we are safe in our bodies, even when our bodies are telling us that we’re not safe. You are safe in this world in your skin. Promise!
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Hopefully, you are starting occupational therapy, which is so much fun. There, you’ll get to play some games and learn how to feel better when you’re at school, at home, and everywhere in between. When you grow up, you’ll think about occupational therapy and smile.
Know that you are not alone, my little friend. Think of me as your big, sensitive sister. I know how yucky it feels when your body and the world around you feel so strange, but I also know how great you can feel when you’re doing the things you love. It’s okay to have SPD. Remember, you’re like me. (You’re my twin, right?!) I’m okay out here as a grown-up in the world. You will be, too.
Lots of love,
Rachel S. Schneider, M.A, MHC is a trained Mental Health Counselor and proud Sensory Processing Disorder (SPD) adult. She was diagnosed with SPD in 2010 at age 27 and since then has advocated for adults with her neurological condition through her writing and related outreach projects. Rachel authors the blog Coming to My Senses and maintains a website on adulthood SPD. Since 2010, she has become a leader of the adult SPD community. Her first book, Making Sense: A Guide to Sensory Issues, was published by Sensory World in February 2016. Her second book, Sensory Like You: A Book For Kids With SPD By Adults With SPD was created in partnership with Kelly Dillon of Eating Off Plastic, and was published by Sensory World in December 2016. It’s the first book written and illustrated for kids with SPD by adults with SPD, and it won the Creative Child Magazine 2017 Seal of Excellence Award in July 2017.
[Feature image: The photograph shows a close-up of the face of a white child with golden brown hair and blue eyes. The child looks into the camera with a worried expression on their face, their eyes wide and their mouth open. Behind them is a blurred background.]