Not Just Spirited E-Book

Chynna T. Laird

• Herausgeber: Loving Healing Press
• Kategorie: Geisteswissenschaft
• Sprache: Englisch
• Veröffentlichungsjahr: 2010

Seitenzahl: 245

Beschreibung

What would you do if your child suffered with something so severe it affected every aspect of her life?
And what if your cries for help fell on deaf ears at every turn? You'd follow your gut and fight until someone listened. And that's what Chynna Laird did. When she was just three months old, Jaimie's reactions to people and situations seemed odd. She refused any form of touch, she gagged at smells, she was clutzy and threw herself around and spent most of her day screaming with her hands over her ears and eyes.
By the time she turned two, Jaimie was so fearful of her world they spent most days inside. What was wrong with Chynna's miracle girl? Why wouldn't anyone help her figure it out? Jaimie wasn't "just spirited" as her physician suggested nor did she lack discipline at home. When Jaimie was diagnosed with Sensory Processing Disorder (SPD) at two-and-a-half, Chynna thought she had "the answer," but that was just the start of a three-year quest for the right treatments to bring the Jaimie she loved so much out for others to see. With the right diagnosis and treatment suited to Jaimie, this family finally felt hope. Not Just Spirited is one mother's journey to finding peace for her daughter, Jaimie. As Chynna says often, "Knowledge breeds understanding. And that's so powerful."
Parents and Therapists Praise Not Just Spirited
"Chynna's memoir is sure to encourage other parents to advocate with the same determination for their own sensational children."
--Carol Kranowitz, author The Out-of-Sync Child
"I only wish I had this book earlier. Even though my daughter and I live with this every day, I learned a lot from this book, and will return to my family with renewed hope and energy!"
--Nancy Pfortmiller
"Chynna's words touched my heart. Her memoir validated the overwhelming feelings I went through myself with my own daughter's struggles with her SPD. Raising and loving a child with severe SPD is draining for both your mind and your physical body. However, with a strong faith in God and the instincts only a mother can have, there is hope. Not Just Spirited will fill your soul with spirit and give you the strength needed to endure your own child's challenging behaviors, leading you on an enlightening journey of acceptance, strength, hope, and healing."
--Diane M. Renna, author Meghan's World: The Story of One Girl's Triumph over SPD
Learn more at www.LilyWolfWords.ca
FAM012000 Family & Relationships : Children with Special Needs
PSY004000 Psychology : Developmental - Child
HEA046000 Health & Fitness : Children's Health

Leseprobe

not JustSPirited

A Mom's Sensational Journey With

Sensory Processing Disorder (SPD)

Chynna T. Laird

Foreword by Dr. Shane Steadman

Loving Healing Press

Not Just Spirited: A Mom's Sensational Journey With Sensory Processing Disorder (SPD)

Copyright © 2010 by Chynna T. Laird. All Rights Reserved

2nd Printing: January 2010

Library of Congress Cataloging-in-Publication Data

Laird, Chynna T., 1970-

   Not just spirited : a mom's sensational journey with sensory processing disorder (SPD) / Chynna T. Laird.

     p. cm.

Includes bibliographical references and index.

ISBN-13: 978-1-61599-008-5 (trade paper : alk. paper)

ISBN-10: 1-61599-008-9 (trade paper : alk. paper)

1. Sensory integration dysfunction in children--Popular works. I. Title.

RJ496.S44L35 2010

618.92’8--dc22

2009035454

Published by

Loving Healing Press

5145 Pontiac Trail

Ann Arbor, MI 48105

Distributed by Ingram Book Group (USA/CAN), Bertrams Books (UK), Hachette Group (EU), New Leaf Distributing (USA/CAN)

[email protected] 888-761-6268

Praise for Not Just Spirited

“I cannot say enough about this book! I only wish I had this book earlier. Through sharing her own family's inspiring story, Ms. Laird offers much needed education and support for parents and grandparents of children with SPD. Ms. Laird has a special insight into this confusing and often misunderstood disorder. Even though my daughter and I live with this every day, I learned a lot from this book, and will return to my family with renewed hope and energy!”

—Nancy Pfortmiller

“Not Just Spirited is a deep from the gut and heart story of life with her daughter who was diagnosed (finally) with a sensory processing disorder. It ain't pretty, but it is compelling. Reading that her pediatrician insisted on repeatedly dismissing the mounting evidence as a “just spirited” child is a familiar story to many but no less galling. It is even worse when a parent is tied to the physician for the sake of required referrals. Living with a severely atypical child can be hell. As Laird clearly points out, no one who hasn't lived with such a child can appreciate the difficulty. That difficulty doesn't even take into account the corrosion it visits on a marriage. Congratulations to Laird for helping to empower parents.”

—Andrew D. Gibson, PhDauthor Got an Angry Kid? Parenting Spike, a Seriously Difficult Child

“Not Just Spirited is at once an excellent—and possibly unique —introduction to this disorder; a field guide; a treatment manual; a pep talk; and a compendium of the state of the art in coping techniques, tips, and advice. This is the story of one family, one mother who would not give up on her daughter. It is also an indictment of clinical psychology at the outset of the new millennium: a profession gone ossified and resistant to evidence and new learning, rendering more harm than good whenever confronted with the unknown.”

—Sam Vaknin, PhDauthor of Malignant Self-love: Narcissism Revisited”

“The story of the relentless power of a parent's love, this book chronicles the first five years of learning to live with Sensory Processing Disorder. Accurate diagnosis and partnership with kind, adaptive teachers take the author from heartbreak to hope. I also came away from this book with awe for the power of how innately adept children are at teaching each other.”

—Nancy Oelklaus, EdDauthor, Journey From Head to Heart

“Chynna Laird has read nearly everything published about Sensory Processing Disorder. She then teaches her audience about it, integrating research with firsthand experience from the perspective of a mother whose child experiences severe sensory processing difficulties. Ms. Laird lets us in on the day-to-day challenges that impact the lives of her whole family, the frustrations experienced by her daughter, herself and her providers, and the obstacles she experienced in negotiating the system in order to attain the much needed therapies.

“As a child psychologist who works with children with SPD, I found that Ms. Laird very aptly describes the issues facing this population, using common language that demystifies the biological aspects of this brain/body dysfunction, without intimidating the non-scientific reader. Unexpectedly, I found myself “tsk-tsking” aloud, as I shared her upset, frustration and fatigue. This book is enlightening, even for professionals who may understand the disorder, but not truly experience the emotions that underlie it.”

—Laurie Zelinger, PhD, RPT-SLicensed Child PsychologistRegistered Play Therapist

Contents

Foreword

Acknowledgements

Introduction – Good Things Happen To Those Who Wait

What is SPD?

What are the Sensory Systems Affected by SPD?

What Causes SPD?

Is SPD a “Real” Diagnosis?

Sharing Our Stories

Chapter 1 – I Saw the Sign

Chapter 2 – “Just Spirited” Are You Kidding Me?

Chapter 3 – Steve's Story: “Daddy Loves You”

Chapter 4 – …And Baby Makes Four: The Confirmation

Chapter 5 – The Last Straw

Chapter 6 – One Step Forward, Two Steps Back…

Chapter 7 – Chynna's Story: “Loving with a Musical Touch”

Chapter 8 – The Long and Winding Road of Therapy

Chapter 9 – HELP!

Chapter 10 – Babies, Brain Food, Jenna, and Fun Factory: Our Holistic Approach

Chapter 11 – Teaching Teachers, and Other Grown-Ups, How To Teach

Chapter 12 – Blackbird Fly: Endnotes for Parents

About the Author: Chynna T. Laird

Resources and Websites

Bibliography

Index

Foreword

Many parents come into my office frustrated, confused, and overwhelmed with the behavior or disposition their children. They often relate that teachers, counselors, friends, and family are constantly commenting that their child is disruptive, distracted, daydreaming, or cannot focus. They have been all over from practitioner to practitioner getting a label (sometimes different ones) and some treatment, but no real fix to their problems. Eventually, I hear how frustrated they are and how much money has been spent with little results or answers.

When going through the child's health history, often the parents will mention that there has always been something different about their kid. Sometimes they will tell me that their child was so advanced because he or she was extremely alert—never crawled, and just went straight to walking. They will often describe them as picky eaters, highly sensitive to their environment, or irritable. As their child has grown and developed, they have seen things that were not like other children such as being by themselves, not wanting to be touched, not walking barefoot, a daredevil, hyperactive, or not wanting to wear clothes. As you read this paragraph one might think, “He or she will grow out of it,” while others would think, “There must be something wrong with that kid.” Well, which one is it? This becomes the daily struggle of many parents as they become frustrated and overwhelmed looking for answers.

Sensory Processing Disorder (SPD) is becoming more prevalent as time goes on. It also appears that more attention is given to these cases and therapies are being established to help those kids function in society. There are many factors involved in SPD as well as many symptoms associated with this diagnosis. Some of the symptoms include hypersensitivity to touch, sensitivity to sound, and exhibiting distress, or confusion. Many factors range from prenatal care, genetic predispositions, and lifestyle to postnatal care and traumas. Often SPD becomes confused or misdiagnosed with other types of labels such as Attention Deficit Disorder (ADD), Autism Spectrum Disorder (ASD) or just labeled as gifted. Finally, there can be other conditions to address (known as co-morbidity) such as Tourette's, dyslexia, and OCD.

After conversations with Chynna and reading her book, I can tell you her story is just one example of what many parents are going through. Chynna shares her experience as a mother of a child with SPD. Her story is one of frustration, confusion, and fear only to leave the reader with sense of hope and relief at the end. Unfortunately, there are many parents that feel alone in the process of doctor appointments after doctor appointments, therapies after therapies, comments after comments all leading to a feeling a frustration, fear, isolation, and confusion. Hopefully reading Chynna and Steve's story will give any caregiver a sense of hope and relief at the end of their story.

As I'm writing this Foreword, I'm also watching my son Zach yell, make noises, and trying to figure out how to put toys into his mouth. Just three weeks ago, we went through a similar frustration as our family friends would comment on his behavior. They would mention that he seemed unresponsive and delayed. Just to get a second opinion, we went and saw a pediatrician who referred us to a pediatric neurologist. By the end of those two visits, we were told that a MRI was going to be done to rule out a tumor or a stroke as they were not sure what it was. Even though I see kids in my office regularly with developmental problems it makes it hard to turn the “Dad” button off. We found ourselves riding a rollercoaster of emotions and frustrated with the process. All tests came back normal but they gave me a small glimpse of what some parents go through on a daily basis.

Sensory Processing Disorder is a diagnosis that is becoming more understood. There are therapies designed to help those with SPD ranging from Occupational Therapies to Complimentary and Alternative Therapies. What is exciting to me is how well the brain can learn new things, improve, and increase its function. Chynna's book is a great tool for many struggling parents trying to figure out where to start. This book is easy to read and informative as it will draw you into the emotions of their journey. It's a great message for the newly diagnosed or even the experienced person.

Dr. Shane Steadman, D.C., D.A.C.N.B., C.C.C.N., C.N.S.Board Certified Chiropractic NeurologistCertified Nutrition Specialist

Acknowledgements

This book started off as journal entries—a way for me to make sense of what was happening to my daughter as well as being a positive emotional release for me. From there I was inspired to help make sure no parents I came in contact with would go through as much heartache as we did. I have several people I've met along my journey to thank for helping me bring this story out giving me the strength to share it. My support group is small but each of them has had a special part in helping me get to where I am:

Thank you to Steve for his patience and support. He never once complained having to care for our four little beauties so I had writing time or for having to stare at the back of my head while I wrote, edited and re-edited.

Thank you to my fabulous little PR group: Judy, who has been like a mother to me the last 10 years; Uncle Craig and Aunt Dorothy, who have always been there for me through thick and thin, good and bad, elation and pain and never let me believe the words, “I can't,”; Grandpa and Grandma for giving me the regular love, parenting and stability I needed as a child to believe in myself and not become a statistic (I know you're both watching over me…I love you and miss you); Angela, Jodi, Annette, Margo, Ruth, Allyn, Krysten and all my other gal-writing-pals at WOW-womenonwriting, without you, I'd never have had the courage to pick up the ball and keep writing; and Carole Bellacera, Mary Rosenblum, and Francie, you are my writing mentors and inspire me each day to keep writing.

Thank you to the phenomenal people in the SPD Community from whom I've learned so much about SPD, mothering, and life: Dr. A. Jean Ayres, Carol Stock Kranowitz, Dr. Lucy Jane Miller, Winnie Dunn, and all the other influential people who've done/are doing powerful SPD research and are continuing to teach Dr. Ayres’ message; Carrie Finnin, Erik and Jennie Linthorst, Diane Renna, Bonnie Arnwine, Lisa Rudley, Hartley Steiner and all sensational parents out there doing sensational things to give other parents inspiration and hope.

Thank you so much to those whose eyes saw what I didn't and helped steer me on the right path: Donna Gravelle, the first person who worked with Jaimie and guided us down the first baby steps; Joan McDonald, who shared her personal story with her own daughter with me and gave me valuable insight I needed; Brian Lotannas, who gave Steve the tools to connect with his daughter; Lori Fankhanel words cannot express the gratitude I have for your friendship, guidance and pearls of wisdom; and Kathy Mulka, who opened my eyes wider to Jaimie's needs and helped me see what I'd missed—you are an angel on earth. I'm also so grateful to Mary Turos for her invaluable insight on helping people understand the connection among the brain and learning and for teaching the world the importance of teaching each child according to their own unique style of learning not how the systems states kids should be learning. To Mrs. P., Kathy Young, Ms. Eisan and the other phenomenal people at Sweet Grass Elementary—thanks for making my child feel accepted, loved and save at school.

Thank you to Jenna, Rita, Maddie, Meka, Chloe and the rest of Jaimie's friends who've never once treated Jaimie as “different” and for accepting her for who she is. Know that no matter whether she's out there smiling and playing with you or lost inside of herself your friendship is always treasured.

Thank you to Victor R. Volkman and the fabulous people at Loving Healing Press that fussed over and tweaked our story so that it all makes sense. I appreciate all of your support and hard work. Also, special thanks to Ernest Dempsey and Laurie Zelinger, PhD who helped proof and edit the many drafts.

Finally, and most importantly, thank you to my baby girl, Jaimie. You are my miracle girl and a true gift from God. You've taught me patience, love, understanding, respect and to see people for more than what is on the outside. You've taught me that failure isn't an option because as long as you try, it counts. And you've shown me the world from a very different perspective—I'm so grateful. You are the bravest little person I know and you'll go far, I'm sure. Mama loves you.

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 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.