The sensory seeking child throws himself into a constant state of motion, bumping, pushing and fixating on seemingly everything. The under-responder will appear to not even notice anything in her environment. The over-responder will scream or have emotional outbursts over what may seem like the smallest of things. Children with Sensory Processing Disorder tend to have quite the knack for the extremes and the unusual, and my past serves as no exception.
I was born in a time where Dr. Jean Ayres was the gold standard in SPD research and understanding, and most people just simply had no idea what any of it all meant. Very few people knew anything about it. Support was limited and hard to come by, and the commercial Internet wasn’t even around yet for help. Outside of Ayres publications, there was very little available to anyone. When I was diagnosed initially in 1989, that’s the way things were. Perhaps that is why I grew up not even knowing I had a problem, in spite of already having the diagnosis.
As an infant, my parents recalled many symptoms: little to no muscle tone or grip, lack of natural world-exploring behavior, extreme overreactions to even mundane sensory input, and a complete inability to function in noisy or bright environments. That wasn’t it. No, there were definitely more symptoms, but those were just a few of the highlights.
Then, a close family friend walked into the situation, and told my confused and worried mother about the benefits of occupational therapy (OT) for children like me. Intrigued, my mom had me seen by an OT, who didn’t need to take very long at diagnosing my sensory difficulties. All she had to do was hear a few of my mom’s comments, and watch me struggling to walk across the floor to make her certain that this is what I struggled with.
Over the next few years, until I was about 5 or 6, my mom was following recommendations from the occupational therapist, even though she couldn’t afford to have me seen by one anymore. It proved invaluable. Those years were quite difficult; as I grew and continued to hit subsequent developmental changes, my symptoms shifted and altered, and I picked up many more signs of my deeply rooted problems.
I was a sensory seeker. I couldn’t get enough! I was running in circles, spinning myself endlessly, jumping onto and crashing into everything, chewing up whatever I could get a hold of, and couldn’t go more than a few seconds without moving. When I was 2, I pulled down an entire curtain, along with the rod. I was given the nickname of Demolition Dan, and it fit me well. I would steamroll over whatever was around me, breaking things constantly. A good Sit N’ Spin was a saving grace for me, as was a trampoline and deep pressure from my parents.
I was an under-responder. I wouldn’t always react right away when people would speak to me. I would walk into things without even seeming to notice them. I wouldn’t catch myself when I fell, and couldn’t seem to feel my mouth. I was hard to get motivated at times, and was easily fatigued. I was a dreamer. I could just sit there for hours, my mind deeply entrenched in my imagination. I also had sensory discrimination problems, which is very common in kids with under-responsiveness. I had a hard time deciphering between similar sounds and sights. I had a hard time knowing where noises were coming from, and couldn’t find anything I was feeling for unless I looked. It was difficult to learn directions and the difference between right and left. My senses were simply muddled, confusing and difficult to interpret.
I was an over-responder, a sensory defensive child. I couldn’t handle a lot of things. Even though I would spin myself in circles, I would get motion sickness during road trips and couldn’t go on amusement park rides. Although I loved to touch others and bump and crash, I couldn’t stand to be touched by other people. Light touch and unexpected touch were too much for me to handle, and would throw me into immediate fight or flight. I also was unable to handle water on my face, and couldn’t swim, even though I went through years of swimming lessons that scared me immensely. I couldn’t wear shirts with tags or clothing with obtrusive seams. I couldn’t handle bright or flashing lights or noisy environments. I would get easily overloaded and was difficult to calm down.
I was also clumsy, the kid that would bump into everything no matter what he did, the kid who was always picked last for sports, if he was even invited. I was not very coordinated and my reflexes were either slow or non-existent. I struggled through five and a half years of little league baseball, only to finally quit because I was too afraid of the ball, couldn’t ever get a hit, and had a throw that was far from perfect (I had even hit one of our star players with a throw that was intended to go way to the left of him). I couldn’t do simple stuff like tying my shoes, pouring a drink, reaching for something without knocking something over, or getting dressed very easily. I couldn’t figure out where my body was in space or how to maneuver it to do anything. I had to constantly keep track of where my limbs were mentally to do the most common tasks, simply because my brain couldn’t connect with it all.
I also had no muscle tone and had a very flimsy posture. I couldn’t sit without slouching, stand without leaning, or eat with my elbows off the table. Saliva was always pooling in my mouth and I would frequently drool and slobber. I would get in trouble for spitting while I ate and was accused of being lazy. I would get very easily fatigued by just the smallest of tasks, and couldn’t keep my head up in school for the life of me.
That’s a pretty long list of things I had difficulty with, of the areas I struggled in, but it is merely the tip of the iceberg. What was most devastating was how this all added up to make me one of the loneliest, most isolated children you might ever meet. I didn’t really have friends. I really, really wanted them, but kids didn’t want to be seen with me or talk to me. The kid who I thought was my best friend turned out to not even want to be around me. The only kid who ever helped me out (even used to open my milk at school for me) was skipped ahead a grade, not to be seen again. I had people I talked to, but no one ever approached me or seemed interested in being my friend. I felt like such an isolated and unwanted failure, that I started having suicidal thoughts as young as seven years old.
As childhood went on, my family life got more and more hectic and stressful. Around the time that Dr. Lucy Miller, Carol Kranowitz, and others were putting out some of the greatest resource books and tools to date on the topic, my family didn’t even seem to remember me having a problem. I became the kid who just stayed to himself, quiet and just wanting to get by. I played video games constantly, pretty much all day. I would also read books, either intermediate level books or books that were so depressing and dark that at least one teacher was concerned. Not many showed sympathetic concern though; it was usually more along the lines of telling me my complaints were in my head, and that I just needed to get over whatever it was I was having trouble with.
I knew nothing about SPD, and that didn’t change until I was in college. As I got older in school, I soon didn’t even really have people I would talk to. By high school, I was quickly becoming a wreck. Years of standing on the sidelines and watching everyone else thrive while I struggled had taken their toll. The stress and chaos in my environment had led made me physically sick, and I missed a lot of school, dropping my grade point average, which would keep me out of the top classes in the school. Ultimately, with no support, and my parents busy with my younger brother (who was slipping into severe bipolar symptoms), I wasn’t sure what to make of myself. I was just trying to get through my day, and I lost hope for my future. I didn’t even apply to a university, which surprised most of my teachers. I simply stopped caring or hoping.
Light came though, at the end of this tunnel. Shortly after turning 20, while I was dragging myself through community college and struggling through a part time job, I recalled that I had this diagnosis, that I had once been told there was ‘something wrong.’ I also knew that I had no idea what any of it meant.
I searched it out. I found out about it. I kept looking and reading, and my life changed before my eyes. I finally knew why I was the way I was, why things had been so terribly difficult for me at times. I was upset and incredibly frustrated, but at the same time, I was remarkably relieved and awestruck by the shear impact of this amazing discovery. For the first time in my life, I could shift the blame off of me, could cast many of my burdens onto a disorder that had taken so much from me.
I started to love myself, to see myself in ways I had never before seen. I simply couldn’t stay silent about this. I needed to share this with the world. I desperately wanted no one else to have to go through what I did. I didn’t want one more suffering child, one more lonely teen, or one more depressed adult to have to live without knowing what was wrong. I didn’t want parents to be so afraid for their children, so long as their children grew up with the knowledge that this isn’t their fault, and that it isn’t their parent’s fault either. I found a focus, and I found a passion. This is where my life has been leading me. This is a calling, and I cannot ignore it.
I want the generations that came before me to be the last to have no idea what was wrong, to have never heard of SPD. I want my generation to be the last that was on the borderline, the last that found out about SPD at a later age. I want the children of today to be the last that grow up in a world that doesn’t understand their struggles or their symptoms as part of a deep underlying neurological disorder. I want our children’s children to enter into a world where SPD kids are given the love and support they need, where ignorance has been replaced by understanding, and where fear and judging have been replaced by acceptance and love. It truly isn’t enough to prepare our children for the world; we really must also prepare the world for our children. This is my dream, and my focus. Let’s work together to make this a reality!
This post was also published on Caryn Huska's blog: Living with Logan as a guest contribution.