Introduction – Good Things Happen To Those Who Wait

It was a task I'd done a million times—something as simple as changing my 15-month-old daughter, Jaimie's, diaper. But her reaction to such a mundane chore sent a chill through my bones.

“No!” Jaimie screamed as I laid her back on the change table.

“Be still, sweetie. This'll only take a minute.”

Instead of calming her, my voice seemed to upset her more. She covered her ears with her hands, screwed her eyes shut, and banged her head against the table. “No, no, noooooooooooooo!” she screeched, the dull thud of her head against the wood emphasizing every ‘no’.

Only when her feet touched the ground again did her hands come off her ears and her screaming cease. I watched her run from the room, leaving me with ringing in my ears and heaviness in my heart. Fighting back tears of frustration, I knew something was very wrong. This just wasn't normal.

From an outsider's perspective, this would seem somewhat normal behavior for a toddler. However, Jaimie's behavior wasn't stemming from not getting her way. As we found out later on, she was unable to cope in the world around her and wasn't able to communicate this to me in any other way. Adding to her frustration was her total dislike of being held, comforted, or otherwise touched. Jaimie was basically trapped in a struggle between wanting to be comforted and touched but her body being utterly repulsed by the feeling of touch. Everyone thought I was nuts, but just knew something was wrong with Jaimie as early as three months into her life.

While other wee ones seemed comforted with touching, hugs, and kisses, Jaimie was the opposite. Whenever we picked her up, she struggled and screamed but calmed down, somewhat, as soon as we put her back down. As she grew, the small odd things I'd noticed about her temperament grew with her: she adjusted slowly to change, startled easily, rarely smiled or laughed, and was so afraid of other people that I spent entire visits or shopping trips with Jaimie clinging desperately to me. A simple, “Hi there!” from a stranger, or even her own Daddy, triggered tears immediately.

On top of this, Jaimie had terrible fits where she hurt herself in some way—such as head banging, biting herself or other people/objects, scratching herself, or pulling out her hair—on purpose.

Whenever I addressed my concerns with family or friends, I was made to feel I was reading too much into things because I was a first time mom. Even Jaimie's pediatrician said her behavior was simply chalked up to “spiritedness” and we just needed to have patience with her.

“She'll grow out of this stage soon enough,” he said at the end of each visit.

When Jaimie's behavior worsened to the point where she had fits for hours at a time every day, I knew she needed help far beyond what I could handle on my own. When she was about two and a half, Jaimie's pediatrician finally listened to my pleas and directed us to an Early Intervention Program. After only one visit, the occupational therapist (OT), named Donna, who specialized in children with sensory issues, was able to deduce Jaimie's behavior down to three words: Sensory Processing Disorder (SPD) [At the time, she'd called it Sensory Integration Dysfunction, or SID.]

While reading our story, it's important for people to remember that Jaimie's form of SPD is quite severe, with all her sensory systems being affected at some level. It's also important to remember that Jaimie's form of SPD isn't common. Most children who have SPD usually only have one or two systems affected and can still function relatively fine once they've learned to recognize their symptoms as well as learned positive coping skills.

This book is intended to be as jargon-free as possible because I felt parents and other people dealing with children who have SPD have heard, and will hear, enough of it during their own assessment, diagnosis, and treatment stages. For those readers who may be unfamiliar with SPD, I've included general information on the subject, descriptions of the specific systems affected by SPD as well as some believed causes.

What is SPD?

The simplest definition of SPD is, “The inability for the brain to process information received through the senses.” (Kranowitz, 2005). The hardest part about SPD is giving it a solid definition. The main reason for this is that no two children experience the exact same symptoms or the same severity of symptoms. Children are categorized as either over-responsive or under-responsive to sensory stimulation. Their brains aren't giving their bodies the appropriate messages to understand how to interact properly with objects, people, and situations in their environment. This can cause them to either seek out or avoid sensory stimulation in ways that seem excessive or odd to us in order to “feel” it in a way that's comfortable to them.

An over-responsive child is one who freaks out with even the slightest sensory stimulation. For example, an odor that's barely detectable can cause him to gag; or a neon light will actually hurt his eyes; or he's easily startled by noise, no matter how loud or soft it may seem to others.

An under-responsive child is the opposite. These children don't seem to respond to stimulation at all. For example, there could be a lot of activity in a room but they don't acknowledge it; or the child will hit himself with something but not react. Sensory seekers, on the other hand, are children who need way more stimulation than the average child to “feel” something. For example, when my Jaimie was very stressed, she needed to have the television, stereo, her toys, and my computer on at the same time and still sought more noise in order to cope. Odd as it may seem, this calmed her.

Donna told me to keep in mind, however, that SPD children may not stay within one category. They may have symptoms spreading out within the three areas. With Jaimie, for example, were times where she needed the over-stimulation as described above but then there were times where even the noise of me pulling the tabs apart to change her diaper had her covering her ears and screaming, “It hurts!” (over-responsive). Finally, there were also times where we'd called her name repeatedly and she wouldn't respond until we stood right in front of her so she saw us (under-responsive). This uncertainty may not be reassuring but getting the diagnosis is the first step in giving parents a sense of direction in how they can help their child cope.

What are the Sensory Systems Affected by SPD?

The most commonly known sensory systems are the visual (vision), olfactory (smell), auditory (hearing) and, gustatory (taste). These systems work together with the following systems, called Primary Systems, to give us information about our environments and how to relate to the people and objects in our environments:

(1) Tactile – This is the sense of touch. In addition to feeling things—touching and being touched—this system also sends the brain messages about things like pressure on the skin, temperature, and the awareness of our bodies. Essentially, when this system is out of whack, we don't feel safe in the world around us because we never know how something is going to feel.

Jaimie, for example, isn't able to handle even light touch. It drives her crazy. When she's very sensitive, she fights having a bath, getting her hair brushed or having her teeth brushed; she doesn't like the feel of her clothes; won't go outside if it's too windy, or even refuses to have anyone sit too close to her. To her, such things send a “pain” message to her brain and she goes into immediate sensory overload.

There are other times, however, where Jaimie can shove her hands into snow, hold ice cubes, hit parts of her body on other objects or touch something burning hot and she won't feel the sensation until much later on. This aspect of SPD, the under-responsive side, is scarier because children can seriously injure themselves if they aren't paying attention.

(2) Vestibular – This is one of the gravity senses that tells the brain about movement. This sense tells the body whether we're moving or not, what direction we're going in, and how fast. It works closely with the visual system to help develop good eye muscle control, eye perception, and attention span. The vestibular system is also in charge of our coordination, balance, muscle tone, and fine motor skills (hand control and dominance). As you can imagine, children with poor vestibular systems struggle with fine and gross motor skills and are often seen as clumsy or “ragdoll-like” (poor muscle tone and control.)

On bad days, Jaimie walks into things, trips, and falls down a lot; isn't able to concentrate on anything; and struggles with simple tasks like bouncing a ball, hopping on one foot or cutting paper with scissors.

(3) Proprioceptive – Essentially this is just a big word to say it's the system that tells us what our bodies are doing. It allows us to gauge, for example, how close we are to something or someone where our bodies are in the environment. The system takes...