Last week was my first proper week of Sensory Processing Disorder (SPD) therapy at the STAR Institute, and oh boy, I’ve learned so much! The tests and evaluation the week before showed that I have some difficulty with Sensory Discrimination Disorder, a subtype of SPD. It basically means that some of my senses have trouble figuring out the qualities of things they’re presented with, and figuring out how my body feels about different sensations.
On Tuesday, we mostly looked at my touch system. For one of the tasks, Carrie pulled out a box of all sorts of kinds of tactile fidgets, and got me to rank them all out of 10, by how well they worked for me. I couldn’t believe how tricky I found it! I could tell which ones I really liked (soft, smooth, and simple fidgets), and which ones I really didn’t like (spiky, rough and poky fidgets) but in between, I had no idea. Once we changed to sorting them by thumbs up, thumbs down, or somewhere in the middle, I could sort them quite easily. I’ve learned that this is really normal for sensory discrimination difficulties – I can easily tell you if I strongly like or dislike the feel of something, but I can’t distinguish between a 3/10 and a 7/10! On this day I finally started to understand the body I’ve been living in all my life, and that was an amazing feeling.
On Wednesday, we looked at my vestibular system, which also has discrimination difficulties. As well as the 5 senses that we all know about, we all have three internal senses too: interoception (which tells us about hunger, thirst, temperature, or needing to use the loo), proprioception (which tells us where our body is in space), and vestibular, which is our sense of balance and movement. Carrie thinks that my vestibular system craves a certain amount of input, because I really enjoy some things that have quite a bit of it, like dancing, yoga and going for car trips. However, it doesn’t want TOO much, and because I have pretty poor vestibular discrimination, my brain doesn’t actually know what the right amount is until afterwards (as we shall soon see 😅). I did lots of movement on this swing, standing, sitting and lying different ways, and the whole time I had no idea whether my body liked it or hated it – I could only feel confusion!
Later on, it turned out that my body did NOT in fact like it 😅 I had a meltdown later that night, and went to bed feeling like I was still swinging. The next morning when I woke up I couldn’t even turn my head! We emailed Carrie and she told us not to come in for therapy, and gave us some suggestions to help settle my vestibular system. I did some weights (proprioceptive!), some online shopping (visual!) and Mum and I went for a walk around an enormous Barnes & Noble (proprioceptive and visual!), and I drank a huge frappe while we walked (even more proprioception!). I felt pretty physically terrible on Thursday, but also freaking amazing, because for the first time, I knew exactly why my sensory system was out of whack, and what to do to bring it back down.
On Friday I was pretty tired and sluggish, so Carrie took us to the Messy Room, and we made playdough. I mixed the dough, added raspberry jell-o and glitter, kneaded it, rolled it out, and cut it into animal shapes. Really? – I hear you ask – is that really therapy? Well, my friend, it is indeed! After making the dough I felt regulated, calm, and wide awake. We talked about allll of the sensory components that went in to this activity, and why it worked to give me energy, and also to continue to help soothe my vestibular system.
This brings me to my next big takeaway of the week which is all about…
We all have an arousal curve that we move around. Think of the blue being a sluggish, tired or sleepy state. The green area is a calm, energised, attentive state. The yellow is a more heightened state, which can be because of many reasons, like excitement or anxiety. The red is an out of control state, and this is where for me, meltdowns occur.
Over the past few weeks I’ve been learning to check in with my body, and figure out where I am on the curve. I’ve also been learning what sensory tools and activities work for me when I’m in yellow, green or blue, and even at different points within each section, like high green vs. low green!
People with SPD have what is called a narrow bandwidth, meaning that our yellow and green sections are smaller, so it’s easier to swing quickly between arousal states. Once in the red, there isn’t anything that we can do, except to get to a safe place, and wait it out. So, even though we’ll never be able to prevent meltdowns entirely, the idea is to learn to understand where we are on the curve, and how to bring that arrow back down when it’s ticking up the yellow.
On Saturday I had a day where I was between the yellow and the blue almost all day, but amazingly, from all that I had learned this week about arousal, discrimination and sensory strategies, I was able to keep bringing it back to the green, and I never entered the red. And all that hard work paid off because Sunday was…
Oh wow, Sunday. I can’t believe the difference that just one week of therapy made for me. For the first time in a very long time, I had a day where I was able to go out and have a really normal, lovely day, and DO THINGS. It was the kind of Sunday that I’ve really missed. Mum and I planned some yarn projects and then went to an amazing wool shop called Colorful Yarns, which lives up to its name, and was like exploring a beautiful rainbow of wool! Then we went for a pretty drive to another wool shop, and found the most gorgeous ice cream shop next door called Sweet Cooie’s. I feel like this place was made for me!!! 😍 So pretty and retro and delicious. The truly amazing thing is that I didn’t need to put on my headphones, even though I was aware that the ice cream shop was noisy, and even though the wool shop was very warm, I was able to easily move myself to a cooler spot.
After that it was home for my daily nap 😆 I’m sleeping SO MUCH at the moment while my brain absorbs all of this information, and my body relearns how to respond to the environment. I’m so excited by how much better I’m feeling, and how much I’m learning. I never would have thought that after one week of therapy I’d have a day like Sunday. It’s amazing, and I feel like I can see my life coming back in front of my eyes.
If you’ve made it to the bottom of this novel, you’re a champ hehe! I was actually going to talk about this week in this blog post too, but realised I had far too much to say about everything 😆 So stay tuned, “Week 3: Big Sensations” is coming to a bookshop near you soon! 😂 Thanks for reading, and I hope you’ve had a lovely week!