Not Just Spirited Page 2

  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 information from joints and muscles and helps us to learn skilled movements.

  Children struggling in this area will have trouble coordinating their bodies to do activities like bouncing a ball, playing coordinating sports—like baseball or hockey—and are terrified of heights, being picked up or held upside down or activities like ice-skating where we can lose a sense of control over our bodies.

  It's important to know about all of these sensory systems in order to understand why a child like Jaimie may react negatively to a certain activity, person, or experience. And one should also bear in mind that what may bother a child with SPD on one day may not even faze him, or her, the next. It's one of the most confusing and frustrating aspects of helping and raising a child with SPD.

  What Causes SPD?

  I asked Donna this very question because the books I'd read hadn't been very clear. Unfortunately, Donna's answer was no clearer: “There could be many explanations for it, from what I've learned,” she said. “The truth is, nobody has been able to pin point this for certain. Currently, the most plausible explanations are genetic or hereditary predispositions, meaning it comes from one or the other parent, prenatal circumstances, or birth trauma. But these are only possible explanations and not definite.”

  Donna also mentioned that once some parents figure out what's wrong with their children, they've actually said they'd remembered experiencing similar feelings as children. So, perhaps, there is a genetic component causing the child to be predisposed to develop the disorder but an environmental factor must occur in order for it to come to the surface or become phenotypical.

  Personally, I've stopped trying to find a solid explanation because I only end up pointing the finger at myself and this doesn't help Jaimie at all. If I've learned anything, it's not to waste time to find blame, but to use the time to find out what proactive things can be done to help Jaimie. Our child doesn't blame us so we shouldn't either.

  Is SPD a “Real” Diagnosis?

  Parents whose children receive a diagnosis of SPD may ask themselves this initially—Steve and I did. When Jaimie was diagnosed with SPD four years ago, I'd never heard of it. I'd heard of autism, Asperger's, and ADHD but not this mysterious SPD. In fact, I was taking a Brain and Behavior course through the University of British Columbia and my professor, Dr. John Pinel—who is a well-known and well-respected Canadian Neurologist—and, incidentally who wrote my text book for the course—hadn't heard of it either! In an email, he'd actually told me he had to “Google” SPD and visit my website to have any clue what I was asking him about. That both scared and angered me.

  Although SPD was discovered in the late 1960s by A. Jean Ayres, and has been researched for over 35 years, there hasn't been enough massive, controlled “quantified” research to prove/ disprove or predict symptoms or life course of the disorder. That's the pulse of research: to create a theory that continues by other researchers trying to prove/disprove it. Because of
the difficulty—until recently—to have variables and controls to study, there aren't actual statistics to provide. Plus, because SPD has many symptoms that mirror other disorders (called “co-morbidity”)—such as autism, Asperger's ADHD, to name only a few—it makes it even more difficult to create a solid controlled research environment.

  According to the Sensory Processing Disorder website (www.sensory-processing-disorder.com), another reason for the difficulties with researching SPD is that a child's symptoms can fluctuate from one day, even one hour some days, to the next. This makes it very difficult to find a controlled environment to conduct studies and the fluctuations in symptoms also make it hard to find solid numbers to create statistics. Additionally, SPD is considered a relatively new diagnosis so there are many people who have it—even as adults—and don't even realize it. In fact, I am friends with a woman who always knew something was different about her but never knew why. She said her environment was a very uncomfortable and scary place for her at times growing up. Imagine her surprise to be diagnosed at age 35 with SPD! Then everything she'd gone through made sense to her.

  One thing we've also had people say to us is that, “We all experience sensory overload at some point.” This is true. But, as you'll see in our story, it becomes a problem, or a disorder, when that sensory overload happens frequently and impedes on a person's ability to live their lives productively.

  So, to answer the question: Yes, SPD is a real disorder. The fact that the name has universally changed from “Sensory Integration Dysfunction” to “Sensory Processing Disorder” just in the last few years is a huge step. With support from leading researchers, such as Dr. Lucy Jane Miller, who carry on the work that Dr. A. Jean Ayres‘ work that she started so many years ago, SPD will finally be included in the next revision to the DSM as a neurological disorder. This means that families will qualify for insurance coverage for treatment of SPD and our children will finally have the additional support of the medical community.

  Sharing Our Stories

  How was I supposed to help my daughter, or even help others understand her, when nobody knew what this disorder was? Once I researched it, however, and created my website, I found many resources and websites to help educate myself. I knew I couldn't have been the only parent out there who not only didn't know about SPD but also didn't know anyone else going through it. That's when I started using my gift of writing to reach out to others and give them permission to reach out to me.

  What I needed to ask myself was: Who the heck would be interested in reading our story? I got my answer after the first story I published on the subject of mothering a child with SPD. After the story came out, my email Inbox flooded with letters from other moms of SPD children, thanking me for sharing my story. It still amazes me how many of us are out there: parents who want their children to be happy in a world frightening them and causing them pain.

  What we need is more research to find out for sure. With research, we can discover the root of the cause; then understand how to treat these children most effectively. But without acknowledgement and discussion, there won't be any research. And without research, there will be no understanding.

  And that's why we need stories, like Jaimie's and those like her, told to help bring about awareness. There are so many wonderful resource tools out there written by occupational therapists, doctors, and other professionals. Here's a resource from a Mommy who simply wants people to see her child and not just her reactions to her surroundings. As I always say, “Through awareness comes understanding and that's so powerful.”

  Here's our story…

  1

  I Saw the Sign

  By the time Jaimie was about three months old, I'd already suspected she struggled with…something. Actually, I knew in the hospital after I gave birth to her but my suspicions were confirmed when she was about three months old.

  I noticed that whenever the nurses in the hospital handled Jaimie, or even when they'd given her to me to feed, her tiny body stiffened and her cries worsened. But when she was put back down, she relaxed, and then seemed to calm enough to go to sleep. When I'd asked the nurses about Jaimie's odd reactions, they'd said it wasn't unusual for babies to fuss right after birth. After all, babies had to get used to life outside the womb.

  “Don't worry so much,” I was told. “You're a first-time Mom and it's natural to worry about every little thing. Relax and she will too.”

  Relax. Don't worry so much. I heard those words a lot over the next while. Yes, I was a first-time Mom and, perhaps, even a bit nervous. And I was the first to admit that I had a fierce protection of Jaimie because Steve and I had worked so hard to conceive her. But I knew when to worry and, from my experience with helping to care for children, knew the difference between a “fussy” baby and a “troubled” baby. Even the most colicky babies felt better being held or just being near you than when they'd be put down. Not Jaimie.

  She startled easily, screamed when she was held or cuddled, and pulled her limbs closely to her body whenever anyone tried touching her. I'd never seen anything like that before. But after continuously being told by the nursing staff and doctors that it was just my first-time Mom jitters kicking in, I stopped addressing it. I'd decided everyone else must have been right—they were the experts, after all—if I was the only one seeing Jaimie's odd behavior. I figured Jaimie would work it out on her own and that she just needed to get used to us, her environment and all the new noises and sensations around her.

  She'd be okay, I thought. And she was, for the first little while after we brought her home.

  During the first three months, different people came to visit. They all took turns holding her and commented on how alert she was. She seemed interested in everything around her and she looked curiously at people when they spoke to her. She responded positively to Steve and to me and allowed us equal bonding time to feed, change and play with her, most of the time. But those subtle reactions I'd noticed in the hospital still loomed.

  Yes, Jaimie let us hold her but only if we'd had her resting on a pillow or blanket over our arms and we needed to be constantly moving—like walking, rocking, or swinging her. She also needed white noise in the background—like running water, a fan blowing, or the sound of an analog television station off-the-air.

  Yes, she let us change her clothes and diaper but not without a screeching cry from start to finish. And, yes, she let us play with and talk to her but I noticed whenever Steve spoke to her, she turned her head away from him and squirmed. Then one afternoon, my looming worries grew stronger and I realized we may have had more to worry about than we initially thought.

  My afternoon study-time had been interrupted by Jaimie's chirping in the baby monitor. Around that time, Jaimie's nighttime sleeping patterns had been horrible. She'd woken up on a nightly basis, somewhere between 2:00 and 3:00 a.m. and literally stayed awake until the sun came up. But, thankfully, she'd allowed herself to sleep during the day.

  As I walked down the hallway leading to her room, my stomach tightened. Her fussiness could be so intense some days that even just walking into her room was enough to set her off. We learned quickly that by making extra noise when opening her door or coming near her, she seemed calmer than if we suddenly appeared in front of her.

  “Hi Sunshine,” I said, opening her door. “Are ya ready to get up now?”

  Jaimie didn't look up at me but her little arms and legs flailed around faster the closer I'd gotten to her crib. “Upsy Daisy.” I said, gathering her into my arms.

  To my surprise, Jaimie cried the second she was in my arms. I checked her diaper—she was still dry. “You must be hungry,” I said, rubbing her tummy. “C'mon. Let's get you some num-nums.”

  By then, her neck was strong enough for me to hold her on my hip, but as soon as I faced her toward me, her body stiffened and she screamed a high-pitched screech that actually rang my eardrums.

  “Jaimie, honey, what's wrong?” I said, bouncing her gently. She dug her toes into the to
p of my jeans and pushed away from me. Her screaming worsened and she grunted each time she pushed on my jeans. It was as if my touch burnt her flesh and facing me scared her.

  I tried comforting her one more time. “Sh… sh… it's okay, Jaimie, Mama's here.”

  Her screaming had gotten so loud I barely heard my own voice. Not knowing what else to do, I put Jaimie back in her crib and stepped back from it… just a little bit. She continued screaming for a few more seconds; then her body relaxed as her crying slowed down, and then stopped.

  This couldn't be right, I thought. Babies weren't supposed to be calmer when you put them down, were they? And that scenario happened every time we tried picking her up or offering her comfort from that point on.

  When I brought these things up with Jaimie's pediatrician he said, “It's natural for a baby to prefer the parent who cares for them most of the time. She'll relax eventually.”

  I remember thinking, “Just when is this relaxation supposed to happen? People have been telling me that since she was born!”

  Even I seemed to trigger negative responses from her. And we couldn't even enjoy normal family activities. Even putting Jaimie in her stroller, if it was too windy (sunny/noisy/smelly/etc.) outside, made her scream. Poor Steve began feeling paranoid just being around Jaimie because even when he'd just said hello to her, she cried. Then Jaimie began teething on top of everything else and all hell broke loose.

  We've never been able to figure out what it was about that time that kicked her fussiness into overdrive but gone was our curious, loving, somewhat easy-going girl. As scared as we were of Jaimie's behavior, it was even scarier to believe something more serious could have been wrong with her. What didn't help was that Steve wouldn't jump on board with me to try to get Jaimie help at first.