No Longer A Secret, 2nd edition

No Longer A SECRET, Second Edition

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© Copyright 2021 Lucy Jane Miller, Lisa M. Porter, and Doreit S. Bialer

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No part of this book may be reproduced in any manner whatsoever without written permission of Sensory World except in the case of brief quotations embodied in reviews.

ISBN: 9781949177688

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DEDICATION

I dedicate this book to both of my children, Arianna Rachel and Alec Ross. You both inspire me to continue my journey in helping children and families with Sensory Processing Disorder. Many special thanks to my sister, Zipora, and to my mom, for your unconditional love and support, and to Annie, Anthony, and Keri for believing in me.

— D. S. B.

To the children, mothers, and fathers, and siblings who have been my professors on this journey to understanding Sensory Processing Disorder. Special thanks to the staff and faculty at the STAR Institute, and to my own sensational family. None of this would have happened without your generosity and dedication, above and beyond what anyone could expect. It does, after all, take a village to provide hope and help to children with SPD and their families.

— L. J. M.

A SECRET is a labor of love for me, and I am grateful for the opportunity to make this tool more widely available for individuals with sensory processing differences. I dedicate this book to all of the children, families, and mentees who have brainstormed with me over the years to create dynamic and individualized sensory lifestyles using A SECRET. I am grateful to the families who participated in my dissertation study, offering invaluable reflections on their experiences with A SECRET. Lastly, I extend a special thanks to Luke and his family who flourished with A SECRET and allowed me to be a part of their team in a deep and connected way.

— L. M. P.

CONTENTS

Preface to the Second Edition

Preface: Doreit’s Story

Reflections from Lisa

CHAPTER 1: Introduction

CHAPTER 2: SPD Past, Present, and Future: A Dimensional Approach to Evaluating Individual Differences in Sensory Processing

CHAPTER 3: Underpinnings of A SECRET

CHAPTER 4: From Theory to Action: Essential Components of Assessment

CHAPTER 5: Attunement

CHAPTER 6: Sensation

CHAPTER 7: Emotion Regulation

CHAPTER 8: Culture

CHAPTER 9: Relationship

CHAPTER 10: Environment

CHAPTER 11: Task

CHAPTER 12: Case Studies

Resources

References

Authors

PREFACE TO THE SECOND EDITION

What happens when something feels bad but you don’t know what’s wrong with you? How are you supposed to feel when your condition has been diagnosed, then re-diagnosed, and you don’t understand any of it? Where do you go when you feel lost and confused, when no one believes you and not even your parents know what to do?

As a teenager, I had a serious problem. I was losing my eyesight, and no one could figure out why. I could see with my contact lenses, but when I took them out, images were fuzzy and diffuse. Things got worse over time, and by age 15, I could barely detect anything except light and dark without my contacts. The lenses hurt my eyes, and I’d often blink one out and have to spend hours on my hands and knees trying to find it. I’d had a happy childhood until I went weird as a teenager.

My parents—both loving, educated professionals—took me to an ophthalmologist, who said there was nothing wrong with my eyes. It’s all in her head, he said. On some level, pretty much everyone suspected I was making up the blurriness, the pain of wearing contacts—the whole deal. My pediatrician and school nurse were sure I’d scripted this teenage drama to get attention. My high-school guidance counselor knew about this psychiatric issue of Lucy making things up and advised me not to apply to a top-tier college, saying, Go where you know you’ll be accepted, Lucy, or you may not get in at all.

Even I, myself, began to wonder what could be so wrong in my head that I was imagining all these eye issues. I thought maybe I was crazy. And if I were, what could I do about it? I was still a child. Where could I turn? In that era, the 1960s, psychiatrist was a word that conjured thoughts of mental institutions, shock therapy, and people roaming the grounds, foaming at the mouth. I felt alone with my fuzzy vision and fears.

What happened next is laid out in my first book, Sensational Kids, but what’s key to the book you’re reading now are two painful memories. One was that people didn’t believe me. To this day, that has affected and shaped my life. The other was that my sensations weren’t like those of my friends. Although I saw less, I heard much more (my children claim I can hear through walls!) And I felt more, both through my fingertips and through my heart and soul. This became apparent in my early 20s, when I finally received a diagnosis of keratoconus and was treated by receiving corneal transplants. After the transplant surgeries, both my eyes were patched for six months, and I wasn’t allowed to move my body or head. During that time, I noticed that when somebody walked into my room, I’d know immediately how the person felt, even if the person was a stranger. As woo-woo as that may seem, it’s true. As palpably as if I used any sight, sound, or smell, I could tell if a person was happy, angry, embarrassed, or whatever. I could sense how people were feeling.

This intense awareness of my own shifting sensory boundaries prompted me to spend the next 35 years studying children’s sensory systems and trying to help parents and siblings understand sensational kids. In many ways, my work—like that of many professionals in the helping professions—is an attempt to work out the frustrations and anxieties I experienced during my own youth.

Sensory Processing Disorder (SPD) has gained significant ground since the first edition of this book was published. Ongoing research continues to diminish the stigma associated with this invisible disorder (and the gaslighting that I experienced as a teenager). Thanks in large part to the SPD scientific work group, funded by the Wallace Foundation, researchers from multiple disciplines, including occupational therapy, have greatly improved our understanding of SPD. At the same time, global awareness of sensory disorders continues to grow, generating a new initiative for overall sensory health and wellness. You don’t need to have a disorder to benefit from strategies to support sensory health and wellness! The more we know about our own sensory differences, the more resilient and better able we are to support our kids with SPD. Of course, we still have a long way to go. There is always more work to be done and more questions to ask.

So, what now? We must work locally and globally to build our awareness so that all people—children and adults alike—who struggle with sensory processing differences get what they need to cope: early identification, assessment, and treatment, if needed. That includes understanding how to provide supports in varied contexts.

The first edition of this book was a follow-up to Sensational Kids, which tells the story of five children with SPD as they proceed through a typical day. Sensational Kids explains the subtypes of SPD in a way that readers can relate to and understand. Although it touches on treatment, there isn’t enough space to really dive into intervention or strategies. SPD is a complex disorder, and no single strategy works for everyone. This book takes on the challenge of addressing dynamic supports to help families create a sensory lifestyle and meet individual needs.

Every child is unique, with individual sensory differences, regulation needs, and most importantly, distinct relationships with family, friends, and community. Over the years, we have come to realize the essential role of relationships in supporting children with SPD. As therapists, parents, teachers, and caregivers, we must learn to attune to our children. We need to recognize their individual sensory and regulatory needs. Yes, we will always provide sensory tools and supports, but it is relationships that provide children the tools to develop emotion- regulation or self-regulation skills.

In this book, you will see a definite shift in focus. We are no longer emphasizing SPD subtypes, because the strategies discussed in each element of A SECRET are not bound by subtypes. We realized that the focus on subtypes forced limits on using the tools and strategies by almost putting them in a box. A SECRET is the opposite of a box! It is a dynamic and ever-changing framework that allows us to identify supports for our children (and families) regardless of the setting or context. When we learn to use this framework, we can use the strategies in each element of A SECRET to support our children at any moment.

One big change in this edition is the shift from Attention to Attunement. This element emphasizes individual differences and the important focus on regulation. Instead of rigidly holding on to the idea that a child fits into any one (or two or three) SPD subtype, we need to attune (observe, recognize, attend) to their cues, looking for changes in regulation. This means first attuning to ourselves! As caregivers, we are the best tool we have. When we attune to our own regulation, we are better able to attune to and co-regulate our children (much more on this in chapters 3 and 5)!

After years of observing, consulting, and running the mentorship program for experienced therapists at the STAR Institute (co-directed by Dr. Sarah A. Schoen and now the STAR faculty), I’m well aware of therapists trained in a traditional model of treating sensory issues who may be feeling dissatisfied and stuck. Having been trained and mentored by Dr. A. Jean Ayres, I, too, used her treatment model for decades. In fact, the randomized clinical trial that my colleagues and I published in 2007 was a 15-year culmination of research that provided empirical evidence for the validity of this approach. The Ayres Sensory Integration treatment approach is an incredibly valuable and effective component of our approach at STAR, and I’ve become convinced that other aspects of intervention are equally important. Regulating a child’s arousal levels, for example, deserves more emphasis in treatment. So, too, do elements of relationship and engagement, and certainly fostering parent education and coaching. This book includes elements of each of these essential components of intervention.

During her mentorship program at the STAR Institute, Doreit Bialer asked for my feedback on an early version of the first edition of No Longer A SECRET. Her approaches appealed to me. I loved the idea of implementing low-cost, low-tech strategies for children with sensorimotor issues. I also wanted to help a wider audience understand the underlying principles that trained experts use to treat their young clients and to help them learn to problem-solve on their own.

Lisa Porter has been my mentee since 2009, when she started the intensive mentorship program at STAR. Since then, she has worked with me and the other faculty members at STAR to grow and develop the mentorship program. Lisa’s dissertation research involved using A SECRET as the foundation of group parent-training to help caregivers problem-solve supports for their children and families. Given Lisa’s experience with A SECRET, it made perfect sense to ask her to join us in writing this edition of No Longer A SECRET.

In Doreit and Lisa, I discovered open-minded and enthusiastic partners who were excited about the process of collaborating and brainstorming to find the best possible way to present this framework.

Together, we’ve written this book for you, highlighting what we’ve learned collectively over the years. At times, we speak directly to you, the parents. Other times, we speak to you, the teachers. And at some points, we speak to you, the therapists. We all have so much to learn. I often say, "The kids are my professors." When a child is particularly complex or puzzling, the child becomes our best teacher of all. We must continue to grow by asking questions every day.

Though the research is ever-evolving, I do know this much for certain: SPD is not a reflection of bad behavior, and it is not caused by bad parenting. In fact, it’s not bad at all. It’s physiologic in nature.

If you are worried that your child might have SPD, take the first step and get an evaluation done by a multidisciplinary team. (For more information on multidisciplinary evaluations, go to www.sensoryhealth. org). You can also join (or start) your local SPD Parent Connections group. The earlier SPD is identified, the earlier a child will learn to cope with it. And the sooner parents learn A SECRET when it comes to helping their child, the sooner stresses will ease in the whole family. I do not mean that parents should become therapists. Instead, families should be taught the principles of therapy rather than just trying to follow their therapist’s suggestions. Then families and therapists can work together to embed therapeutic interventions into the natural days of children who are receiving treatment.

We hope this book gives you a framework for strategies to use the next time you need them. There is help. There is hope. We’re all in this together. And believe me: no matter the doubts of the medical orthodoxy, there are a lot of us.

— Dr. Lucy Jane Miller

May 2021

PREFACE:

DOREIT’S STORY

It wasn’t until I adopted my first child that I’d ever loved anyone so intensely that no words could describe the feeling. I remember the phone call we got to congratulate my husband and me for being the new adoptive parents of our son, born in February 1995. We were both so overjoyed, we screamed and cried—it was a mixture of a thousand emotions that had been pent up for so long.

Our precious boy, Alec Ross, awaited our arrival 9 days after his birth. The delay in bringing him home from the hospital stemmed from a couple of minor concerns—he was jaundiced and had a small head. Still, we were assured that he was perfect. My best friend at the time, a neonatologist, carefully read all the medical reports and asked if we were sure we wanted to go through with this particular adoption. Are you kidding? my husband and I answered. Of course! And so we began our personal education in Sensory Processing Disorder (SPD).

Our son came home from the hospital with projectile vomiting and severe irritability. Among many distressing behaviors, Alec fought against being held and kissed. As a new mom, I was at once madly in love but stressed out and confused. By the time he was 15 days old, I’d arranged for an early-intervention team to start evaluating our son, who cried throughout their assessment. After what seemed like a lifetime, the therapists left and came back with a caseworker within a week’s time. My husband and I were presented with a long list of our son’s problems. My mind wandered as I blocked out the therapists’ presentation. It sounded like a lot of noise to me. Their words were impersonal and offered no solutions—the team just went through a long list of worries that seemed to rationalize the need for each of their intensive intervention services. In all their chatter, I remember looking down at my sleeping baby and thinking, These people don’t really know you. And you know what? I was right.

That team of professionals, confabbing in our living room 16 years ago, knew nothing at all about Alec Ross. They knew nothing about how well he would ice skate at age 5 or how much he’d love tinkering with engines when he was 11. They had no idea how creative and artistic he would become.They couldn’t predict how easily he’d be able to say I love you as a teenager, and really mean it. And they couldn’t have known that he would grow up to be one of the most tender young men on the planet. To them, Alec was just a cluster of challenges and symptoms. Still, we needed their help. Thank you all, I remember telling the therapists, as they handed me a long list of expensive therapy equipment to buy and a schedule of dates and times they’d be coming back to work with my son.

Until you experience being the parent of a child with SPD, you can’t really understand the desperation of wanting to help, the vulnerability to experts’ advice, and the