Though never diagnosed, it’s ridiculously obvious that I have and have always had sensory processing disorder like my son. Even as an adult I’m pickier than my four year old, requiring squidge-free chicken and small or well covered pieces of beef, because I find the texture unbearable. I wince and cover my ears at loud sounds, I can’t understand what people say when there is background noise, and I just about go into mental shutdown when there are two different songs playing at the same time. I jerk away from light touch and lean into deep pressure. As a high-functioning adult, it’s harder to see the SPD, as I can control my reactions to sensory input, and don’t scream, fight, run, or shutdown as I did and as my son is currently doing. You can’t see it, but it turns out, I can really feel it. As I learn more about my fibromyalgia diagnosis, it is clear to me this has been building up for a long time. I’ve always been frustrated and looked for excuses when I got tired easier than all my friends, when physical activity came easier to everyone else, while I shuddered and shut down in gym, and when people could act just the same as they always do in loud restaurants and concerts, and I could barely speak or move around. I assumed that I was just weak, and that my need for space and rest after social activities or panic at walking into a loud room were just depression and attention seeking. While that has been a part of it, I realize now that another big piece is this SPD issue. It takes a lot more for me to get through a day than it does for most people, and that leaves me tired. Not just sleepy, time for bed tired, but fall asleep on the table, forget you’re speaking in the middle of a sentence tired. And now, as I’m parenting, working, and volunteering, as well as trying to maintain connections to my friends, and I’m giving myself less time for rest and the input and stress increases, I’m seeing a great increase in pain. I’ve always had some pain, I’ve had daily headaches for years, but recently it’s gotten so bad I can’t sit, I can’t sleep, and occasionally I could barely move. With no break and no outlet, the sensory overstimulation has built up to a point where my body started shutting down.
It’s hard to accept that I need to limit what I do and make time for interventions. I still feel that I’m lazy, weak, and faking these issues for attention or to get away with behavior, and while I know I’m not, it’s taking a long time for what I know to change what I feel. It’s hard not to feel guilty for lying down after a day of work instead of helping clean up or get my son in bed. It’s frustrating to cancel on a dear friend because I’m having an off day and the pain in my knees is too intense. It will take time to give myself the same lenience I give my son, knowing that I don’t have to pick up everything by myself after a long day, the same way I don’t make him do it by himself when he’s over stimulated. It will take time to learn my own signs and triggers to take breaks or get the input I need, the same way I’ve come to see that Simon’s “spectrum eyes” and impossible fidgeting are bright, loud warning signs that the child needs a sensory break immediately.
I’m learning that a cluttered house doesn’t just annoy me because I’m tidy, it overwhelms my visual system and cause real, legitimate stress, and without an outlet, it wears me down and my brain causes me to feel expansive, unrelenting pain. It’s true with music, tickling, light touch, particularly on my upper arms and thighs, with temperatures too hot or cold, rooms to busy, and smells too strong. As I begin to emotionally accept that is true, I begin to think about how to manage it. Acupuncture and tai chi will help me get rid of the stress and over stimulation, and I can continue those as part of my own sensory diet. I can seek my own proprioceptive input, claiming the rocking chair for myself, and coming up with my own heavy blanket. I am standing more at work now, and need to buy some ear plugs and sun glasses for my long transit commute. Like we do with Simon, I can adapt my schedule, gather my tools, and discover my triggers, and hopefully relieve some of this pain and see more energy back in my life. My nervous system misinterprets sensory input as pain and works hard to minimize my reaction during the day, so I will work to limit the input in ways that let me function, and find ways to relieve and rework my neural paths to allow rest and reasonable output. And I will be grateful that we know how to help Simon now, at 4, so that he can be a sensory pro by the time he’s an adult, instead of running himself into the ground and finally learning what is wrong and what to do.