Wednesday, April 22, 2015

S is for sensory processing disorder

Sometimes, the world of a person with sensory processing disorder can feel like complete chaos.
It was supposed to be a relaxing experience. Sing with the church choir at a high school graduation mass in Saint Joseph's Cathedral in downtown Buffalo. Then walk to Saint Paul's Episcopal Cathedral, also in downtown Buffalo, and practice for an upcoming choir concert. Music is magic, so this would be a magical evening, right?

Well, no. Not exactly. When I went to the pre-mass rehearsal at the cathedral's choir balcony, I could hear people downstairs holding conversations. 

OK, they are talking and enjoying themselves before mass. 

Already, even though the church was mostly empty, I could barely hear the choir director. He said something, and other people followed his directions. I attempted to imitate what the other people were doing, but rather unsuccessfully.

The cathedral began to fill with people, all talking simultaneously, like geese. My ears felt as if they were being forced open by some sort of diabolical machine. Then the noise was poured into my ears. The choir director was moving his mouth. What was he saying? The pain in my ears was becoming more and more intense. The voices echoed madly in the open space of the cathedral and the open space of my head. The sounds repeated, over and over and over again, and the noise found a place to reverberate in the center of my head.

I attempted to sing, to cover up the chaos of the downstairs babble by my own voice.

I did not succeed.

When the mass began, the downstairs voices ceased.  Suddenly, a very sharp voice drilled its way into my ears. It was one voice, amplified by a microphone. The voice felt like shards of broken glass. I understood not one word of it. I just wanted it to stop.

After mass, it was time to take off our choir robes and get ready to go to rehearsal at Saint Paul's Cathedral. I forced myself to walk to the room where we were to hang up our choir robes. There were too many other people walking in front of me, behind me, and around me. Their movements seemed random and chaotic. It looked like the visual equivalent of the painful noise that I had just experienced. I felt motion sickness and dizziness, almost as if I had spent too much time on a rapidly spinning amusement park ride. I quietly prayed for help because I could no longer tell where my body was in space.

I kept my back to the wall to feel something solid, so that I would have an idea of where my body was. It didn't work very well. Somehow, I managed to remove my choir robe and hang it up, which seemed like a monumentally difficult task. The noise continued to echo in my head. My ears felt enormous and every small sound was magnified until it became a roar. I could no longer send signals to my body, signals that are normally automatic and unconscious. I stood, confused, until nearly everyone went downstairs. I did not think that I could walk down the stairs. Two people helped me down the stairs.

Outside felt a little better. The air was fresh and slightly cool. People's voices sounded like voices, not like echoey and broken-apart words. 

At the second cathedral, the choir director began playing the piano. It sounded as if it could use a tuning. The choir started to sing. I heard each individual voice but I could not perceive the entire choral sound. At that moment, I would have been able to point at each individual who was singing off key, even slightly. I wanted to ask them to please sing the right notes. Fortunately, I restrained myself. I could control only my own voice. I sang carefully so that I would not hear myself singing off key. 

Rehearsal lasted for a long time, or so it seemed. 

After rehearsal, I went home. The noise was still bouncing around in my head. I was still having difficulty telling where my body was in space. 

After three days, my head became quiet again. I stopped feeling like a cornered animal. I felt human again.

The above story is what happens when the sensory world becomes too much for my sensitive system. Our world is not designed for people like me, who experience a condition called "sensory processing disorder." 

I am telling my story of sensory processing disorder because it is a fairly unknown and misunderstood disability. I want you to know that, if you suspect that you or your child have sensory processing disorder, you are not alone. You can get help. There is a name for the things that have been bothering you.

Things that sensory processing disorder are not: 

  • attention-seeking behavior. The pain is real. It's not a bid to get attention.
  • attempts to control other people's behavior. When I ask you not to crack gum or not whistle loudly, I am not trying to control you; I am trying to protect myself from pain.
  • bad behavior. I am not being annoying on purpose.
  • mental illness. Sensory processing disorder is not a psychological disorder, although many people with sensory processing disorder have been misdiagnosed with mental health issues. 
Many, but not all, people who have sensory processing disorder also have been diagnosed with "autism." Generally, people who have sensory processing disorder also have a collection of other related conditions. I also have auditory processing disorder and hyperacusis. 

People with sensory processing either seek out sensory stimulation or they avoid it. People who seek out sensory stimulation tend to rock in their chairs, bump into people, or jiggle their legs a lot. They seem to need more sensory stimulation than they are getting from their environment. People who avoid  sensory stimulation are regularly overstimulated by their environment. Their reactions to light touch, sound, or things that they see may seem to others to be unreasonable over reactions.

I tend to be overstimulated by my environment. I have a condition called "tactile defensiveness," which means that, for me, light touch is extremely uncomfortable. When people brush past me, it feels as if bugs were crawling on my skin. In the past, before I learned about my sensory processing disorder, I would get strong aggressive feelings when someone touched me lightly, even if the touching were accidental. I wanted to fight that person for invading my personal space. I did not understand that the invasion was an accident.

On the other hand, I appreciate a deep massage or a bear hug. My aversion to touch is only to light touch. I seem to crave pressure touches. The harder you hug, the happier I am.

 Also, as a person with tactile defensiveness, there are certain textures that I cannot tolerate. They cause so much discomfort for my tactile system that I will throw them on the ground within seconds. I cannot wear certain fabrics and I cannot wear clothing that feels tight or binding, such as turtlenecks. 

My hyperacusis means that noise is pain. There are certain frequencies that will cause me excruciating pain, even if the sounds are not loud. Some of the worst sounds for me are: gum popping (too explosive), whistling (too shrill), nails on chalkboard, electrical instruments (especially guitars). I am also sensitive to off-key sounds and will stop singing abruptly if I perceive myself to be off the pitch.

Other sensory issues include: smells and tastes. I tend to be a fussy eater, mainly because of the smells and/or texture of food. No condiments, such as mayonnaise, mustard, or ketchup, for me. I'm OK with avocado, though, and will spread soft avocado on my sandwich. No spicy foods, either. 

Nevertheless, I love food and enjoy cooking and eating.

I was diagnosed with sensory processing disorder at the age of 40. When I was a child, no one had ever heard of sensory processing disorder. The "experts" gave me various unhelpful labels, such as "emotionally disturbed." They were probably right. I'd think that anyone who was constantly feeling pain from things that others consider just normal in the environment would feel a level of emotional disturbance.

The earlier sensory processing disorder is diagnosed, the better. Small children's brains are still developing and they are the most responsive to therapies that will help regulate the sensory system. If you have a child that you suspect may have sensory processing disorder, please do not hesitate. Get the child diagnosed and into therapy as soon as possible. Generally, the person who is best qualified to diagnose sensory processing disorder is an occupational therapist. 

For more information about sensory processing disorder, take a look at sensory processing disorder website. 

5 comments:

Stacey said...

Thank you for this. I have the most basic of understandings of SPD and this gives me an inside look. My youngest son's physical therapist thinks that my oldest son has a few characteristics of SPD, but sounds don't seem to bother him.

Vicki Finn said...

Wow, I can't imagine how difficult that must be to manage a life with SPD. Thank you for sharing this. Love from the UBC.

Sue Kuentz said...

Alice you are so brave to share this invaluable information with us - I wish I could give you a big, bear hug. I've taught in the elementary school for 33 years and have certainly had kids in the past with many of those symptoms. Parents never told me their child had SPD but it wasn't too hard to adapt my classroom to their needs (I was an inclusion teacher) which meant I had kids with special needs mixed in with regular ed kids.

Again, thank you for sharing what it must be like!

@Door2LoreSue
PowerofStoryABlog - Every Hero Has a Story

Sandys Jar said...

Thank you for a sharing , it was great to get into your world and experience it with you. I felt I learned a lot.

Sandy

Kathy Tussing said...

I can sympathize, though I don't suffer as much as you do.