How SPD came into Feather's life

I first heard of this most curious and elusive disorder (sensory processing disorder) whilst having a casual conversation with a friend of mine whose daughter (my muse)  has through essentially random chance (or I prefer to think of it as part of the divine workings of the universe, but that’s just me) been pivotal in my pursuit of understanding this disorder that is not a “recognized disorder”. It is frequently misdiagnosed as a host of other psychological and potentially physical disorders. To further complicate the situation and thus the likelihood of receiving a correct diagnosis, SPD is a rather unusual phenomenon in the sense that it is strictly a neurological disorder which frequently manifests in significant behavioral symptoms, it may also equally likely manifest in different forms of developmental delays (although therapy frequently is able to provide the additional support necessary), it may also appear to be some form of specific or unspecified learning disorder,  and (so now we are essentially straddling two different fields) and the third, possibly most surprising factor, is that SPD has been kept exclusively to the realm of occupational therapists presumably given that many individuals suffer from some sort of coordination/spatial/motor planning/muscle tone/postural control/balance issues (so now we are looking at three very specific, fairly different, very distinct specialties: (Neurology, Psychology, and Occupational Therapy). Three different specialties that typically do not have more than minimal theoretical knowledge of what might qualify as a situation where a referral to one or another may be required. The potential that a Speech-Language Pathologist, special education professional, audiologist and or behavioral optometrist or any combination thereof is required is also a possibility. As I mentioned earlier: you’re going to need a team.  

By now,  I am feeling pretty confident (not cocky, but fairly confident) you may be starting to see the inherent complexity of this most curious disorder. One thing in particular that differs tremendously amongst individuals is at what age any symptoms are first noticed. This is frequently determined by what those are. While I did not have any difficulties significantly with motor skills that weren’t otherwise explained or determined to be problematic (such as meeting specific developmental milestones regarding sitting up, standing, speech, reaching and grasping for objects) mine began to appear in toddlerhood primarily as what were considered behavioral. My biological mother got tremendous pleasure telling people that despite having been an extremely easy infant, when I hit approximately the eighteen-month mark, when children begin to demonstrate autonomy and start being able to express their preferences, I became the “demon child.” I believe it is becoming apparent what one of the primary motivating factors was that led me to pursue my field of education. I digress. Clothing became an issue: textures of fabric, I didn’t like anything tight, I didn’t like things with tags, seams, anything that in any way restricted movement.  I fought over routine grooming: hair brushing, styling, nail trims et. cetera.  There were certain frequencies of sound that were highly distressing, such as the vacuum (my life became considerably more miserable when my mother chose to adopt an amazon parrot from a friend. I learned the hard way that screaming back only made it scream louder. However, it did not stop from screaming back out of rage and frustration, which undoubtedly was delightful for anyone who happened to be within hearing range).  I would seemingly fly into age-inappropriate tantrums when the smallest change had been made to my environment, such as a piece of furniture not being placed in the EXACT same spot as it was prior to vacuuming. Unlike individuals with Autism, I seemingly “outgrew” a lot of those things as my brain matured and I (without realizing that this was what I was doing at the time) learned to self-regulate (learning what movements, tactile sensations, sounds, visual stimuli were both soothing and what were upsetting) while I simultaneously  also gained more control over things like choice of clothing purchased, and was able to take over my own grooming requirements.  There are still specific tactile sensations/sounds that I barely tolerate. Such as having my hands sticky. When I ice cookies, I wear gloves so I don’t have to wash my hands after every single one. Dry sand is fine, I love the water. Coming out of water into wet sand is a misery that I only tolerate because I so rarely have the opportunity to go to a natural body of water and my love for frolicking in one of those is stronger than my hatred for the feel of wet sand clinging to me. Also, when water shoes/Tevas were readily available, they were a bit of a game changer. Conversely, for as long as I can remember, I have had the same little fidget/habit that was one of things that was just chalked up to “weird” but not something that I really gave a tremendous amount of thought to except when there were phases in my life where I was self-conscious of it and attempted to break it (which was a temporary fix, I do it to this day, frequently. I twirl my hair. But I realized that I essentially doing it not to fidget and that’s available, I like the silkiness of it between my fingers, and this tends to happen less now and only when I’m really focused on something and my hand is like on autopilot, I will rub a little lock against my lips. Because the lips are one of the areas of the body with a tremendous amount of nerve endings, just like your fingertips, and the sucking reflex is one of the first and most deeply ingrained survival reflex we are born with. Which is why around that toddler age, absolutely everything that can go into a baby’s mouth can and will. That is our very first sensory stimulus, and when an infant is sucking, they’re associating that with the pleasure of being fed and cuddled and warm. Which becomes a very very strong connection. So babies are exploring their environment and learning about it initially through their mouths. Now, most of them eventually outgrow this somewhat terrifying/frustrating/disgusting/adorable depending on how you want to look at it phase by around two. Biting is also another means of sensory exploration, some kids will weaponize this and again, most outgrow it pretty quickly. Now, here’s one of your “demon child’s SPD antics” stories. This is truthfully one that for a while I had some doubts about the actual truth of this story, given that my mother had a fondness for embellishing particularly “embarrassing” stories from my childhood. However, knowing what I know now, it does make sense and I don’t doubt that this is a pretty unaltered version. Apparently, when I was quite verbal and well past the “biting” phase, as the story goes, I  had been sitting on her lap or next to her and rather randomly, turned around and bit my mother. When she asked me why I would do that, my response was “you’re just looked so sweet, I wanted to find out”. That makes me sound like a little sociopath, right? Little Hannibal Lector toddler. Which is why, knowing my mother and knowing myself, there was a part of me that was always a bit skeptical of the accuracy of her recall of that event. However, when I look at that through the lens of SPD, particularly my specific profile (which is hyper tactile, I am mixed regarding taste, I crave specific strong flavors but am extremely averse to things most people don’t notice – ask me about beets - and hypo proprioceptive) so to translate that for you: I am incredibly sensitive to touch, again, at an age where I still did a lot of exploring with my mouth, biting in particular provides strong sensory input that is soothing, as does sucking, which is why many kids will suck their thumbs/fingers/whatever well past the age most children will grudgingly let go of that habit. I also vaguely recall gnawing on pen caps, pencils, used to bite my nails (which I actually did break that habit). If I was sensory craving in that moment, it’s entirely plausible in my 3ish or so little mind, I would feel like biting mom was a sound choice. (I mercifully do not remember this incident or the aftermath, but I have no doubt that I was quite quickly disabused of the notion that was a sound choice). The other example is not so much funny in and of itself, but it tells you a little bit about the labor of love that is this site/foundation/racking my brain to help you help your child.

 During the course of writing these posts, I was quite literally pondering this question when I was failing miserably at falling asleep one night. I knew I was never a pacifier or thumb sucker. And I remember thinking that was kind of odd given my sensory profile. Then I had this memory surface of this little square pillow that I had been given one year for Christmas by a relative and I remembered that I used to chew on the corners of it. Then it was one of those really in depth, super clear “flashbulb” memories, as some are. Suddenly I could literally remember the way it smelled and the vaguely fabric softener taste…which is also a very clear indication that it was a very real memory that had not been pulled from the archives of long-term storage for over three decades. You’re welcome. 

I have always liked specific strong odors many do not find remotely pleasant: unless it’s a direct hit to my dog, I enjoy the smell of skunk. I used to have ferrets as pets and for those of you who have ever owned or spent any time with one of these precious little snake kittens, they have a very distinctive musk, they are in fact in the same family as skunks.  I also enjoy the smell of gasoline and diesel fuel. Which, for my curious friends out there, NO, not to the point where I ever once have considered huffing it. I gravitate towards strongly flavored foods, such as sour, salty, spicy but despise anything with the tiniest hint of bitter. Bitter is one of our predominant taste receptors because things that are toxic and naturally occurring are often bitter, which is nature’s way of saying: poor choice – go find something else. I don’t argue with nature. I consider that to be another poor choice.  However, my point is that part of why I studied child psychology was to attempt to understand myself and take that knowledge coupled with my personal experience and utilize that to help kiddos who were living through what I had. Although, interestingly enough, what I thought explained many of adolescent/adulthood emotional struggles only explained certain things. The remaining piece of the puzzle was not something I ever found during my official studies in psychology.

 Ultimately, after having studied and specialized my concentration in the areas that I thought were the most salient, I had more understanding than I started with, but not as much as I would have liked. Through the magical workings of the universe and that singular conversation with a friend at the store, I ultimately came to the conclusion that I have SPD. Suddenly a tremendous amount of my life now makes sense that did not prior to this awareness and understanding. I can tell you not simply from a theoretical perspective that SPD really is a legitimate thing, but I understand far more deeply than would have been possible without my experiential understanding. 

 In the meantime, I enjoy writing. I enjoy imparting what I consider to be information that I have done the homework behind investigating both its potential to be useful and the feasibility/practicality of this particular piece of information and how to potentially apply it. I offer the tools/skills/means of viewing one’s own life that FOR ME I found useful. I never will (nor in all honesty should I (and the in my personal opinion theoretically applies to all humans ever, but I can only speak for myself), ever feel I possess the unique understanding, ability, or the am in a position to know what someone’s individual situation, circumstances and therefore what may or may not serve useful for anyone else at any point in time) and thus essentially offer UNSOLICITED advice, or start using words such as “should” when it comes to presenting information. I am many things, but most certainly NOT that. I digress, back to SPD.