Hello there, dear friend!
Today I’m logging in to fiiinally share with you how things have been going for me post-treatment, and what I’ve been working on these past few months. It’s been a while coming, I know! As you may already know, I travelled to the STAR Institute in Denver, Colorado last September to have intensive treatment for my sensory processing disorder. It was truly life changing – I learned so much, and returned home in a much, much happier and healthier state.
Things improved incredibly rapidly for me during my time at STAR, and I felt like I was on this sky-rocketing trajectory to recovery. It was a very exciting time! The past few months have been a bit less sky-rockety and exciting, but equally valid and important in my recovery journey. I’ve been laying strong foundations, and working on slowly, gradually making my way up the “second mountain” of The Path to Sensational Living – a wonderful concept that I would like to share and explore with you in this post 😊
This brilliant, so brilliant, diagram was created by Sarah Norris, who (along with Carrie, my occupational therapist) runs and developed the adult and adolescent treatment programs at STAR. You can find Sarah and more of her work at https://sensorycoach.org 😊 I love this concept and diagram so much, and it has applied to me so well – as you will see – so I knew I wanted to draw my own colourful version of it to share with you and write about 😊 Thank you so much Sarah, for letting me do that, and for your wonderful work!
Let’s explore these mountains!
When I first arrived at STAR, I was right at the bottom of the first mountain – surviving. Things were pretty rough, and I was really barely functioning.
I’d done a little bit of Problem Identification and Information Gathering (I knew that I had SPD, and I knew a little bit about SPD), but I felt like there were so many missing pieces in the puzzle. STAR does very comprehensive diagnostic testing, which immediately gave me many more pieces – and over the next few weeks I gathered so much more information about SPD, including managing arousal, the different senses, and how emotions interact with sensations. With Carrie’s help, I set and worked on goals (Goal Identification!) to improve my daily life, both short-term and long-term. I learned about my own individual sensory difficulties, sensory preferences and strategies that work for my body through lots of Exploring, Experimenting and Experiencing; both in therapy with Carrie, and on my break days.
I raced up the path of the first mountain, and by the end of my time at STAR, I was all the way at the bottom of the second mountain, with a newfound Self Awareness and Self Acceptance.
Since I’ve been home, I’ve been working on journeying along the path up the second mountain. It’s been much slower and harder than the journey up the first mountain, and a tad lonely at times, but I’m so proud of myself for how far I’ve come!
The biggest victory for me on this mountain has been achieving Self Regulation. One of the most important things I learned at STAR was how to regulate my arousal (you can read about the arousal curve in this post) – but I still needed help to actually do it. It was hard for me to discriminate where my state of arousal was actually at along the curve, and what strategy I should choose to help me to get to a more regulated state.
My Mum is wonderful (Carrie calls her “Super Mom” and it is 100% true), and has taken most of the last couple of years off work to support me while things were very bad. She has been with me on my whole journey, and she’s what STAR calls a co-regulator – a support person that helps you to regulate your arousal, and manage your SPD.
When I got home, I practiced throughout the day, everyday, identifying my state of arousal, and responding to it. This was work that took a while, and honestly didn’t feel particularly exciting 😆 But by December, it had become intuitive! I can now identify where my arousal is at very quickly and easily – and I now just know what my body needs to feel more regulated. My brain has absorbed all of that information and learning, and it has turned it into instinct. My Mum is now back at work, almost full time, and I am able to regulate on my own. THIS. IS. HUGE.
Once I could do that, the rest of the second mountain was a much simpler trip! It became so much easier to take care of myself with Self Care and Self Healing, and to manage my own time and days, with my own activities (Self Management!). When I had check ups with my psychiatrist and GP, I realised I could also now Self Advocate! Where I had been unable to communicate clearly, I could now pass on information and explain SPD with ease.
While I was in Denver, I had been able to go out, often! To shops, to parks, even to a couple of cafes. Why then, could I now barely leave the house? When I was home, in my own space, I was doing great. When I tried to go out, total disaster. Fortunately, I have Carrie, who is very wise, and just such an amazing OT. I’ve had weekly Skype sessions with her since being back home, and they are so helpful! I expressed my fear that I might be going backwards, and she pulled out The Path to Sensational Living.
I thought this diagram was clever when I was first introduced to it back in my first week at STAR, but when we pulled it out again a month or so ago, I realised it was more than clever. It had read my brain and put it in a diagram! I hadn’t looked at it for a couple of months, and my memory of it was hazy. I looked at it that day, and couldn’t believe how exactly I’d been following along this path, achieving those words, in order no less! I was there at the top of the second mountain. I had arrived! I had the third mountain in my sights, where I wanted to be so badly, but I couldn’t quite make the jump yet.
Carrie explained that when Mum was my co-regulator 100% of the time, I was able to go out far more easily because Mum was carrying the weight of all that second mountain work. Now that I’m doing all the self regulation myself, it’s taking up a lot of my energy, so I have less left to cope with outside environments. BUT when I am able manage outings again, I’ll have a much more solid foundation, because I will be carrying all of that second mountain / self identity work with me!
I wasn’t going backwards. I was just laying the groundwork.
So this year for me is all about slowly climbing that third mountain.
A few weeks ago, my family constructed a pool for me in my backyard, and being able to swim everyday has been keeping me so regulated, and given me the capacity to get over to the third mountain for brief spells. I’ve been experiencing moments of Problem Solving, Self Direction and even Productivity!
I call these my “third mountain moments”, and every time I have one, I jot it down in my phone, to keep a record of how far I’ve come. I’m thinking about creating some sort of mountain on my wall that I can physically stick them to 😄 I’m working hard at celebrating my tiny victories – like being able to make a batch of chocolate orange brownies, and reading my way through a stack of library books.
I’m also working on small goals for managing my days, seeing people and going out. I’m seeing an audiologist this week to start some auditory processing therapy, which should help with the “seeing people” and “going out” parts! Noise and sound is a big external factor (the weather on the top left of the diagram!) that comes into play when I try to go out, and it’s often too much for my brain to cope with. I’m excited to do some work on my auditory processing, and hopefully make seeing friends and leaving the house a bit more manageable 😊
Baby steps all the way to the top!
Wow, thank you for reading this! What a star. I plan on going back to normal length blog posts now that I’ve got you up to date with everything that happened at STAR and since! Hope you’ve had a lovely week, and as always, if you’ve got any questions about any of this, hit me up in the comments. Sometimes I’m slow to reply, but I promise to respond. Who knows – I might even be having a productive third mountain moment, and get back to you super quickly! 😉
All my love,