What does Sensory Processing Disorder Feel Like?

What does Sensory Processing Disorder feel like? Bear with me for a second—I am going to be semi technical for two paragraphs to explain Sensory Processing Disorder (SPD) and then we will dive in to what it feels like. 

Sensory Processing Disorder is when the nervous system has difficulty receiving, processing and/or responding to input correctly. This shows up for individuals in many different ways.

One person may be overstimulated or avoid one type of input and under responsive or seek another. There are many different types of sensory input (vestibular, active and passive proprioception, tactile, gustatory, olfactory, visual, and interoception). A person can be a hodge-podge of under and overstimulated, seeker and avoider in all those categories. This leads to each person with SPD presenting very differently.

So how can you know what SPD feels like for someone? First, we are going to back up and discuss some global feelings that likely all SPDers can relate to.

Hold your jello!

I want you to imagine that you are handed a saucer. On the saucer, someone places a tall cube of jello. Your job is to go about your regular day carrying the jello on the plate without spilling it.

Now, you can do this. It wiggles and jiggles when you move, yet you walk carefully. You keep your eyes on the jello while you are doing your regular activities. Other people don’t have to hold jello and are doing their things so easily. You do your best to keep that jello upright. When you come home at the end of school or work, gosh, you’re really tired of keeping that jello on the plate! Maybe once you get home you spill the jello or just throw that saucer in the sink and say “I quit!” 

And you wouldn’t be blamed for it, either. It is ridiculous to have to spend that much attention and focus on balancing your jello to get through your day. You are less productive. It’s stressful. If you spill your jello everybody sees.

This is the best analogy I have found for what it feels like to live with Sensory Processing Disorder. It takes extra effort and focus to handle sensory information. Instead of doing your work, you are busy trying not to worry about the feel of your clothes or that it is so noisy. You need extra breaks to get up and move so that you can stay on task. And at the end of the day, it often falls apart because it was so hard to keep everything in balance all day.

A few examples

I am a non-diagnosed avoider. I was not aware of Sensory Processing Disorder as a child or even when I became an adult. Even in my Occupational Therapy classes somehow it escaped me how much of this rang true in my life. Only once I began to work at a pediatric clinic specializing in SPD did I realize that I was not just sympathizing with those kids, I was one of them.

Yesterday my husband patted me on the back at dinner. I instantly turned toward him and started to ask him why he was trying to kill me, and caught myself. I was having a sensory moment. What felt like a midsized earthquake that first moment was really a loving pat. It was at the end of my busy day, taking care of a auditory sensory seeking child (oh, yes, auditory avoidance is my specialty!) at a dinner with friends and apparently I was almost done holding my jello together. 

And I am an adult! Think about what that means for a kid, who has so much less mental maturity to handle their emotions and responses. Not to mention a heck of a lot less control in their life. As an adult, I get to tell my daughter, “I am sorry, let’s turn the music down right now. I need to focus.” I get up and get a drink whenever I want or switch tasks to give my body the breaks it needs. Kids in school are told when and where they get to do their work, and they all have to do it together, under the same bright lights. No wonder they drop their jello when they get home.

We’re all different

Another thing to know about SPD is that when the nervous system isn’t able to process information correctly it is often perceived as pain. It makes sense for the brain to drop input it can’t handle into the “pain” category, as pain is a protective response. If the brain doesn’t know what is happening, sending out a pain response is the quickest way to keep the body safe from potential harm. Normally, that happens when you touch the burner or cut your finger. For an SPD person (particularly hyper responders), that pain response gets triggered way more often. 

So that child who is crying because their sock seam hurts is not lying or trying to manipulate you. Covering their ears because the sound of a toilet flushing or the hand dryer is so loud is genuine discomfort and maybe even pain. This doesn’t mean that there is nothing you can do about it, however. We’ll talk about that in just a bit. If that toilet and hand dryer thing sounds way too familiar to you, you should check out my other blog Auditory Processing.

The other end of that scale for SPD is that when they are under responsive, sensory input may go completely unnoticed. They may have a huge glob of chocolate pudding on the corner of their mouth and be completely clueless. They may play sports and on the playground for quite awhile and still not get that grounding feeling like the other kids that helps them be prepped and ready to sit and learn. This requires a different approach again.

Sensory Processing Disorder truly has a broad spectrum of possible scenarios. Please remember, though—we’re all just trying to hold our jello.  

Help them hold their jello

So how can you help someone with SPD hold their jello? Set them up for success. Start every day with a sensory diet. This gives them their best chance at holding their jello that day. Use sensory breaks to help them regroup when that plate is getting a little tippy. Everyone needs tricks and tips to hold their jello better.

Understand that just because they held their jello while doing something yesterday, doesn’t mean that they can hold their jello for that same task today. Those with Sensory Processing Disorder can all tell you that there are good and not-so-good days. Some days staying regulated is just easier, or not. You also have to remember what else went on that day. How much work was holding that jello today?

When they come home, exhausted from holding that jello all day, give them a chance to decompress. For some people with SPD, that means sitting quietly in a calm space. For some that means going out to jump on the trampoline or go for a walk. As always, find an Occupational Therapist to help guide you if you are getting stuck. They are expert jello steadiers.

I would love to hear from some fellow jello-holders and jello-holder helpers. Did you find a great way to hold your jello or help someone hold theirs? Leave me a comment or a photo below! Maybe share this with someone else who is just learning to help someone hold their jello.