Posted on 09 October 2014.
October is National Sensory Awareness Month. As part of this national education effort, Inside Bainbridge is publishing a series on Sensory Processing Disorder (SPD), citing the latest research, information from experts in the field, and personal stories from parents, caregivers, and kids affected by the condition. (Family names have been changed for privacy.) Read the other articles in the series:
Sensory Processing Disorder (SPD) takes many forms, but the guiding experience for those with the condition is a difference of perception. People with SPD have a neurological makeup that causes them to process sensory information differently than most people do. This can create confusion and misunderstanding for those with SPD as well as for those interacting with them. People with SPD often struggle with the dissonance between their own perceptions and the perceptions of others. This dissonance can be painful and isolating for people with SPD, but it also can offer insights that only come with an altered perspective.
Bainbridge Island, Washington, third grader Emma has a form of SPD that falls primarily within the SPD subcategory sensory modulation disorder. Because she is hypersensitive to her surroundings and has trouble filtering sensory input, she at times appears underresponsive, especially in the area of auditory functioning. When people speak to her, she often requires things repeated once or more before she can focus and register what has been said. Her parents say they must repeat things to her at home to get her to “tune in.”
“Why Can’t They Just Wait a Second for Me to Say It?”
But Emma’s auditory processing difference isn’t merely a delay in receiving auditory input. It also is challenging for her to form a timely response. She says that in class other kids jump in to answer questions for her that she knows the answer to because she is a beat or two behind with her answers. This makes her angry, and she wonders, “why can’t they just wait a second for me to say it?” Her parents, Iris and Jesse, report that she struggles with feeling “stupid” and sometimes hits herself in frustration.
The fact that Emma is gifted creates even more acute dissonance for her. Although her analytical ability is several years beyond that of her peers, she gets “stuck” in class because often she can’t process her teachers’ instructions and has trouble filtering out classroom noises so she can focus on her work.
“We’ve Worked with Her Teachers Each Year”
When she began first grade, for the first month she started the day under the table in the hallway because the classroom felt so chaotic to her. Transitions are often particularly challenging for SPD kids, and they are for Emma. In second grade she sometimes went to the bathroom so she could be alone to finish her work. Now in third grade Emma goes to a quiet room when she is having trouble focusing. Jesse explains, “We’ve worked with her teachers each year to help give them strategies for helping Emma.”
“It’s the Deer in Headlights Thing”
Emma’s condition is socially difficult, too, since frequently she doesn’t notice that people have spoken to her, or she hasn’t understood what they have said. Jesse explains: “It’s the deer in headlights thing, with Emma knowing someone expects an answer from her but not knowing what they have said or not being able to bring herself to speak up.”
With other children she is more comfortable asking, “What?” or “Can you say that again?” But with adults, especially unfamiliar ones, Emma is more intimidated and has developed an involuntary “freeze” anxiety reaction. When she freezes, she says nothing or looks to her parents or an adult she trusts to help speak for her.
“When she was four, five, even six, it was more or less okay, but now that she’s almost nine people expect her to speak for herself,” says Iris. “As her parent it is an agonizing balance between trying to allow her to speak for herself and learn to handle difficult social situations but also intervening when she really needs my help.”
Iris says for her one of the biggest challenges of Emma’s SPD has been dealing with adults’ reactions to her daughter. Some other parents of kids in Emma’s class who don’t understand her sensory issues have at times taken offense when Emma hasn’t responded to them, saying to other parents, “there isn’t much going on in that head,” or “what’s with her attitude?”
“Being Labelled Shy Is Not a Compliment”
Iris says that in public situations when strangers talk to Emma, like at the grocery store or the bank, they sometimes are visibly hurt if she doesn’t respond, calling Emma shy. “In a world where extroversion and quickness are equated with likeability and success, being labelled shy is not a compliment, and Emma knows it. She hates being called shy, especially since she is a kid who really wants to be involved and interact, as long as she feels safe.”
One-on-one Emma is an outgoing and animated kid. Her imaginative, humorous, and kindhearted personality shines through when she is feeling in balance and safe from sensory overload. Those who know her are used to the fact that sometimes she doesn’t answer right away and that she occasionally flaps her hands. “As kids do, her friends take her idiosyncrasies in stride and love how fun and creative she is,” explains Jesse.
“Sensory Processing Bunny”
Iris and Jesse began talking with Emma about her SPD when she was six, referring to it as her Sensory Processing Bunny. They all agreed that the bunny was in its hole sometimes when people above ground were talking, and the bunny needed to poke her head up to hear and respond. But if the bunny felt overwhelmed or scared, she could go down her hole to feel safe. Iris says, “We wanted to find a way to talk about it so Emma would not see herself as defective, and since she loved rabbits, this metaphor was much easier to accept than a ‘disorder’ label.”
When she is feeling overwhelmed or tired, Emma at times needs to squeeze things, be squeezed, or swing. She says it helps to flap her hands when she is really thinking deeply about something. Like many kids with SPD, she often has “meltdowns” after school, parties, or other overstimulating experiences. According to Jesse she holds it together through the event and collapses later: “She is so proud and tough, this is a side of herself she only lets down at home with us. Most kids have meltdowns from time to time, but it is only the SPD parent who knows the intensity of the SPD kid’s meltdown.”
Iris adds, “Sometimes she is literally writhing on the floor unable to speak, reaching up to us to help, and we just have to hold her tightly and talk her through it. Often it is when she has gone too long without eating, and the best thing we can do is get some protein into her.”
“Tough Love Simply Doesn’t Work with Her”
Emma’s parents say that she was not able to self-calm as a baby. “Tough love simply didn’t—and still doesn’t—work with her. If we ever tried to leave her in her crib she would cry herself into projectile vomiting,” explains Iris.
Jesse and Iris have been working for years to teach Emma self-calming techniques. Along the way they have sought help from many people. “Right now she is seeing an Occupational Therapist who has given us some great strategies for helping Emma regulate her senses.” She has a swinging chair, a hammock that she wraps herself in, and “stretchy green stuff” that she squeezes. And she has started to form a vocabulary for talking about what she feels, which is particularly empowering for kids with SPD, who so often feel alone in their experience.
Read the next article in this series: Sensory Processing Part 3: Disorder Kids or a Disordered World?
[This article from the archives originally appeared on Inside Bainbridge October 24, 2011.]
Photos courtesy of Maggie Taylor, Martin Howard, Eric Chan, Maggie Taylor, and Tim Pierce.