Working through a sensory-sensitive past

I stared at the dry erase board.

Mrs. Busbee, my third-grade teacher, formed a string of cursive C’s. The letters were attached, forming an odd, ocean-like wave.

I saw how she held the marker in her right hand and the way she deliberately formed each letter. The marker never left the board in between letters; it held course and continued forward.

In my left hand, I held a pencil with a school-issued rubber grip meant to teach finger placement. But it was meant for right-handers. Mine was turned upside down. It felt awkward.

OK, you form a curve for the top of the C, retrace that path and then curve up for the next one.

I gripped the pencil, holding it tighter so I wouldn’t drop it.

It moved, forming the top curve of a C, but not forming it well. I kept going and began the next letter.

It was a slow process.

Mrs. Busbee’s movements were swift and steady.

I pressed too hard and my paper ripped.

I’m never going to get this right, I thought, fighting a growing sense of failure.

I pushed the ruined paper to the side and looked again at my teacher’s example.

The pencil still felt awkward. It wasn’t meant for me.

I tried again. It seemed so easy for everyone else, but my fingers wouldn’t cooperate.

The more I tried, the more frustrated I became. Then I started to cry.

When Mrs. Busbee asked me what was wrong, I couldn’t explain it. She tried to show me — one-on-one — guiding my hand across the page.

But it was too late. I was still crying, and there was that stupid lump in my throat, making it difficult to even form words.

The ones I tried to form got lost in a hyperventilating, can’t-catch-your-breath crying spell.

She patiently told me to go to the bathroom and wipe my face. She told me to calm down.

I couldn’t.

I must be a slow learner, I thought, too sensitive.

I’d find out more than 15 years later — during a visit with my parents to celebrate my 27th birthday — that I was neither. There’s a name for how I am: sensory processing disorder. My parents told me I’d been diagnosed with it as a toddler.

Sensory processing happens when the nervous system collects data from sensory experiences and organizes it so that the brain can make an appropriate response. The disorder means that information is not processed properly, resulting in an over- or under-reaction, depending on the stimuli.

During that visit, Mom shared a few instances that made her question my development. I seemed awfully clumsy, always dropping or bumping into things.

Once, when I was about 2, I was sitting at the kitchen table and fell out of my chair for no apparent reason.

I didn’t like barrettes or other things in my hair. I didn’t like being held or cuddled unless I was sick.

And when I ran in the backyard, Mom noticed I seemed to pitch forward instead of running with a straight back.

At the suggestion of Mom’s father, a pediatrician, they had me tested at a local occupational therapy office.

After I talked with my parents, I remembered the different types of therapy I went through as a child — among them speech therapy as early as age 4.

I took horseback riding lessons to help with balance and coordination.

There were sessions focused on sensory-oriented therapy, exposing me to different experiences to help me properly organize sensory inputs so I could adapt to a situation instead of reacting.

The characteristics

That conversation opened so many doors for me.

For the first time in my life, I began to see that my problems weren’t a matter of lacking focus or not trying hard enough. Many of the problems had to do with the way my brain processed sensory inputs and how my body responded.

I realized that all those times I walked into walls or misjudged the distance from a desk weren’t my fault. My eyes saw the approaching obstacle, but my brain couldn’t relay the message to my feet in time to change course.

Later, Mom mailed me a book she had read to understand my condition. I was surprised when I opened the package to find “Sensory Integration and the Child” by Dr. A. Jean Ayre, the occupational therapist and educational psychologist who developed the framework for recognizing and treating sensory issues. I had seen that book at home many times over the years, but I had no idea we owned it because of me.

It offered a checklist of characteristics to consider that might indicate a sensory issue. Here are the things from the list I remember struggling with most:

SENSITIVITY TO SOUNDS

▪ Mom used to grind coffee beans. Hearing the grinder in the kitchen would agitate me. I couldn’t be near the kitchen when she was making coffee.

▪ I was distracted/bothered by background environment sounds. If the overhead fan was turning fast and shook, I couldn’t tune it out.

SENSITIVITY TO SMELLS

▪ Certain smells bothered me. I had to leave the kitchen if Mom made deviled eggs or was cleaning the floors.

POOR BALANCE/COORDINATION

▪ I compensated for the “loose” feeling of a pencil in hand by grasping it tight. I had trouble regulating pressure when writing or drawing so my writing might have been too light to see, or I pressed so hard that the tip of the pencil broke.

▪ I would often lose my sense of balance.

SENSITIVITY TO TOUCH

▪ I got mad when Mom nudged me in the side with an elbow. She did it to emphasize a point, but it registered as unwanted contact. Most people would probably notice that they’ve been elbowed and move on. For me, my whole body tensed up and I would be on high alert, followed closely by anger.

▪ Tags on shirts irritated my skin. My parents once bought me a nice, full-length wool coat that I couldn’t wear because the fabric irritated me.

▪ I was excessively ticklish. I would go into a giggle fit when our pet guinea pig just barely brushed my leg.

SPEAKING

▪ It was hard to have meaningful two-way conversations because I either didn’t know what to say or couldn’t say it well. As a child, I looked to Mom to answer for me.

▪ If I was not understood the first time, I had difficulty rephrasing a response. I would get frustrated, angry and usually give up.

▪ I had difficulty articulating and speaking clearly, and often mumbled.

WRITING/TACTILE PERCEPTION

▪ I would often switch between writing with my right and left hands. I couldn’t decide which to use, which made it difficult to develop a dominant hand. Same with scissors: I would alternate hands and not make progress with either.

SOCIAL

▪ I preferred to play on my own, often participating in repetitive play, such as puzzles or board games, for hours. I was perfectly happy playing board games by myself.

▪ I did not seek out connections with familiar people. I would typically wait to be invited to join a friend instead of asking if someone could come to my house.

The after-school meltdown

I finished receiving therapy before third grade. It’s hard to say why therapy stopped. In many ways, my parents never understood the full extent of the sensory disorder and how I was impacted. I don’t blame them for that. It’s hard to treat a problem you can’t see.

I consider myself lucky to have been diagnosed in the 1980s. Sensory processing problems were just being recognized, and there weren’t many therapists who specialized in the field.

The physical aspects of my sensory issues were mostly addressed by this point: speaking, balance, coordination.

Socialization was another thing.

At school, there was so much to mentally process on top of trying to blend in with my classmates and trying to be likable, that I was completely burnt out by the time the final bell rang. I can see now how much I needed time to myself, but back then I didn’t know why.

When Mom picked me up from school and started asking me about my day, like any loving parent, I couldn’t handle it. I didn’t want to talk; I wanted to be left alone. But I didn’t know how to express this desire.

I offered one-word answers. She didn’t take the hint; she just asked different questions.

The more she kept at it, the angrier I got. I’d eventually yell at her to be quiet. When we arrived home, I made a beeline for my room.

A few hours later when I emerged for dinner, I was a bit calmer. Dad could ask about my day — even asking the same questions — and I was more willing to answer.

Adapting over the years

“Aerodynamically, the bumble bee shouldn’t be able to fly, but the bumble bee doesn’t know it so it goes on flying anyway.” — Mary Kay Ash

I came across this quote in college and instantly fell in love with it. I just didn’t realize how appropriate it was for me.

By many accounts, people would think my sensory processing issues have been resolved:

▪ Learning: Despite problems with learning, something inside eventually clicked, and I figured out how to study properly and take tests. Even geometry eventually made sense. I not only finished high school but completed a bachelor’s degree on schedule and a master’s degree.

▪ Balance/coordination: I’m not as much of a klutz these days. I have my occasional gravity checks, but they’re not as frequent. And my hand-eye coordination improved enough that I lettered in basketball all four years in high school and was among the top scorers for the team. It didn’t hurt that at 6’1”, I was the tallest girl in my small school. To think that when I started playing basketball in fourth grade, I was about 5’6” and had to be taken off the court because I was crying: I was afraid of getting hit by the ball or that I would hurt someone.

▪ Writing: Once I figured out how to properly write, it became my outlet. It was freeing to express my frustrations, thoughts, hopes, goals and worries on paper without being criticized. I could make as many edits as I needed before sharing. And creativity began to flow through that, morphing into poetry, fiction writing and journaling.

▪ Sensitivity to sounds: Sometimes background noises are distracting, but it’s not as overwhelming as it used to be. I think focusing on white noise (such as classical music while studying) helped train me to tune out unnecessary sounds.

▪ Responding in anger/tears: I still have moments when I let things build up too much, and then I kind of explode. Sometimes there are too many things happening at once, too many people talking at the same time, and I can’t concentrate. I can feel the frustration build inside, but I’m learning to walk away. I’m learning to give myself time to cool off before snapping back in anger.

Still a work in progress

Despite the progress, there are some areas where I’ve made significant improvement only since learning about the diagnosis. The emotional and social effects of growing up a bit different from my peers are harder to identify.

▪ Celebrating small successes: Growing up, when I finally learned how to write cursive, there was no celebration. Instead, I was upset that it took so long to achieve. I’m just doing what everyone else has been able to do all along. What is there to celebrate? I’m working on trying to focus on my own progress and timetable instead of comparing myself to others.

▪ Acknowledging strengths: When it requires a lot of effort to do many things, it’s hard to find something you’re good at — something that you can claim as a strength instead of being convinced that everyone is better at it than you. It’s a process. Slowly I’m recognizing that, when people point out good qualities, it’s not just some twisted attempt to boost my self-esteem. They actually mean it.

▪ Speaking up when irritated: When something bothered me, I was told to “stop being so sensitive.” Over time it became harder to share when things bothered me. Is this something worth bringing up, or am I just being sensitive? Is this a real issue? Sometimes I let the problem continue for a while as I figure out where I stand. When it becomes too much, I run the risk of feeling like it’s too late to address and fix. I’m still working on finding a happier compromise.

▪ Verbal communication: I was labeled shy. No one knew I had internal barriers preventing me from sharing freely. They just thought I wasn’t a big talker. How could they know if I didn’t say anything about it? I’m getting better at making small talk. It’s sometimes difficult to maintain a conversation because my window of opportunity to share something closes while I’m still trying to figure out what to say. And once I do finally know what I want to share, it’s usually no longer relevant.

When I do have the words, the internal filtering begins: She probably doesn’t want to hear my opinion. Who really cares, anyhow? Is it even worth sharing?

Through counseling sessions, I learned to let go of some of the pressure I put on myself. If I have an answer but don’t know how to connect it to the current conversation, I can begin my response with “I know it’s relevant, but I don’t know how to explain the link.” Receiving positive reinforcement (“thank you for sharing” or “I never thought of it like that”) has also encouraged me to not be afraid of speaking up.

Advice to Parents

It probably would have been helpful to know about this diagnosis earlier. My parents thought I knew. But to their credit, it’s not an easy thing to bring up with a moody kid.

The important thing is that I found out. And now I have some answers and a chance to better understand my past and move forward.

Some other tips:

▪ Help your child set individual goals that are realistic for his abilities. Celebrate achieving those goals.

▪ Be patient during mistakes and struggles. Telling your child he is just being too sensitive and only needs to try harder can have a negative effect on self-image, especially for a problem outside his control. Acknowledge the sensitivity.

▪ Make sure your child knows you love and accept him as he is, not for what he can or can’t do.

This story was originally published April 28, 2016 at 3:05 PM with the headline "Working through a sensory-sensitive past."