Over the past year or so, I’ve entered into a new field of study. I did not choose this field of study; it definitely chose me. It perhaps began when we were awaiting the results of Josh’s genetic testing, done at the insistence of our audiologist who strongly believed that a syndrome was responsible for Josh’s hearing loss. We still don’t have an answer to that question, but we are once again advancing to some more refined genetic tests through John Hopkins.
From that time of testing (around age 10 months), I watched various peculiar behavioral issues emerge in my son, some staying, some dissipating as time goes by. Indeed, on more than a few occasions throughout the past few years I’ve spent sleepless nights gripped with terror over Josh’s future or afternoons spent on my knees, pleading for guidance and help. Needless to say, by the time we found our way to a Sensory Processing Disorder diagnosis in December of 2011, I had already begun to read a bunch of stuff on autism and related disorders. I have also found myself reading about ADD and ADHD, as my eldest son came to me last spring, telling me that he was certain he has ADD. I finally had him tested last week (6 hours of a full battery of tests with an educational psychologist–no results yet). I think it was just being exposed to our occupational therapist and all the subtle clues she picks up on in Josh that have allowed me to be more aware of not only Josh, but of my other two children’s various potentially neuro-atypical behaviors. As well as my own leanings this way. I mean, I think we are all somewhere on the neuro-atypical spectrum, which challenges the need for the label neurotypical. Still, if we aren’t labeling just to push away but to accept and embrace, then perhaps such labels are tolerable.
Today I read something that bears repeating (as opposed to summarizing) here:
To be alienated is to be compartmentalized, estranged, heretical. The alienated are the ones who can’t be integrated but need to be included, who we include by excluding . . . . Through language, we cast judgment on people, lock them up, treat them, hide them, group them, exclude them. It’s as if there are “things” that exist that we don’t see we’ve created with words: homosexuals, depressives, compulsives, psychotics, neurotics, schizophrenics, suicidals. We are word addicts in our attempts to keep things at bay. The spectrum of suffering is vast because the possible scenarios our mind can enter are equally vast. Since we can only truly be cured by something through entering it fully, maybe healing and torment always go together.
Stone, Michael. What’s the Music All About? May 2012 Shambhala Sun.
Language and labeling can be both a starting point and a point of separation. We’ve learned more about the brain since the 1990’s than we had in all previous recorded time to that point. Where does that leave us. I guess it leaves us with knowledge and a place to research learn and experiment. Before “sensory integration disorder” was labeled by educational pioneer Jean Ayres, there was no language to identify or explain sensory issues in children. Indeed, because I now have a language and knowledge around sensory disorders, I am now aware that I had sensory issues whenever my mother brought out tights, lace or nylons when I was younger. I freaked out. I still cannot even think of the texture of such things without shuddering. Would it have alleviated some of our fights if she truly understood how painful it was for me to have to be subjected to the wearing of these tight, scratchy, non-breathing fabrics? I also realize that I make certain hand motions around my face when stressed that could be labeled “stimming.” My oldest brother used to (lovingly) imitate me and make fun of me for doing these motions of either rubbing my hands together really vigorously until I calm myself or putting my hands on either side of my mouth and squeezing hard (sort of like The Scream). My oldest son has been also noticing these hand motions of mine for years and bringing them to my attention(although rarely done in public, I am not always aware that I am doing these things–yoga is helping with this awareness). I rock in a rocking chair about four-five hours/day. No kidding. When I was in college and law school, that was the only way I could study. I now type on my lap top, about a hundred fifty miles/minute, while rocking in a rocking chair. In fact, I am rocking as I write. I also have suffered on and off with intense anxiety throughout my life. And so I am starting to wonder if I have SPD as well or if, per chance . . . well, who knows? I guess the label doesn’t matter so much at this stage of my life. I just don’t think that I am neurotypical (and certainly my ex-husband was not neurotypical); so where does that leave my older two children? I want labels, but I don’t want them. I want to embrace my differences as much as I want to heal those that are painful–say, per chance, those that might make learning difficult for my older son or cause him to be extremely socially awkward.
I am having difficulty ending this post because I don’t really have any conclusions. I just wanted to say, I am on this path. I have entered this field of study. I am asking questions. I am researching. I am opening my heart and mind to where this all might be taking me.
I guess I’ll rest with this: labels are dangerous unless we can also understand and embrace that we are also all one.