Not Just Spirited Read online

  not Just

  SPirited

  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)

  www.LovingHealing.com

  [email protected]

  phone 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, PhD

  author 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, PhD

  author 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, EdD

  author, 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-S

  Licensed Child Psychologist

  Registered 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 inclu
de 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 Neurologist

  Certified 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.

&n
bsp; 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.