Lucy Jane Miller - No Longer a Secret

No Longer A SECRET

Unique Common Sense Strategies for Children with Sensory or Motor Challenges

Doreit Sarah Bialer, MA, OTR/L

Lucy Jane Miller, PhD, OTR

No Longer A SECRET:

Unique Common Sense Strategies for Children with

Sensory or Motor Challenges

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Arlington, Texas 76012

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2011 Doreit Sarah Bialer and Lucy Jane Miller

Cover and interior design, Cindy Williams

All rights reserved.

No part of this product may be reproduced in any manner whatsoever without written permission of Future Horizons, Inc, except in the case of brief quotations embodied in reviews.

Print book ISBN: 978-1-935567-29-5

E-book ISBN: 978-1-935567-37-0

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 my colleague, Dr Sarah A. Schoen, who joined our team a decade ago and has made countless contributions to developing our dream. And to my staff at the STAR Center and the Sensory Processing Disorder Foundation: 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.

To our readers: We look forward to seeing each and every one of you, either as clients at the STAR Center or in our advanced mentorships at the Sensory Processing Disorder Foundation!

~ L.J.M.

Table of Contents

Doreits Story

It wasnt until I adopted my first child that Id 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 criedit 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 concernshe 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, Id 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 weeks time. My husband and I were presented with a long list of our sons 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 solutionsthe 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 dont 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 hed love tinkering with engines when he was 11. They had no idea how creative and artistic he would become. They couldnt predict how easily hed be able to say I love you as a teenager, and really mean it. And they couldnt 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 theyd be coming back to work with my son.

Until you experience being the parent of a child with SPD, you cant really understand the desperation of wanting to help, the vulnerability to experts advice, and the willingness to do whatever is necessary at whatever costeven if it means turning your warm and cozy home into a therapy clinic. No treatment is too expensive, no intervention is too time-consuming, and no doctors office is too far if it means potentially sparing your child the negative feedback, social awkwardness, name-calling, isolation, confusion, and low self-esteem that come with SPD. Whats essential is to remember who your sensational child is, beyond labels and diagnoses. He or she has beautiful and amazing talents that maybe only you get to see. Alec is not only a kid with sensory craving and dyspraxia. Hes a smart, funny, polite, talented, personable, charming, and passionate 16-year-old who has lots of dreams that keep him going. Always knowing thateven during the loudest tantrums and toughest meltdownshas helped our family navigate our way through it.

Professionally, my education in SPD started 15 years into my career as an occupational therapist, when the school where I was working asked me to greet students at the bus every morning. Immediately, I noticed remarkable differences in the way the children got off the bus. Some kids jumped down the stairs and skipped to the classroom, where they eagerly unpacked their belongings and got ready to start their day. Others had to be carried off the bus, screaming and kicking. It was clear that these differences seemed to reflect more than the kids attitudes about school. The bus ride itself, I realized, could be overwhelming. The bumps and noises, the stops and starts, the close contact with other kids, and the invasion of personal space could be completely overloading and disorganizing to some children. Why, I wondered, could some kids cope on the bus, while others fell apart?