Beyond Expectations into a World of Possibilities: Insight, Inspiration, Life Lessons and Stories from Working with Children, Teens and Young Adults with Diverse Abilities.

By Patricia E Bailey

BEYOND EXPECTATIONS INTO A WORLD OF POSSIBILITIES

Author, Patricia E. Bailey shares her extensive background with children, teens, and young adults in her inspirational book Beyond Expectations Into a World of Possibilities.

You will be captivated by the insight, inspiration, life lessons, and stories from working with children, teens and young adults with diverse abilities.

From toddlers to teens, from neuro-typical children to children with diverse needs, the book brings life to issues, disorders, and syndromes that affect people the readers work with. Through real-life examples, the author shares insights, thought-provoking ideas, examples of techniques, practical strategies, and life lessons.

You come away with a deeper understanding of yourself and children, teens and adults with diverse needs. This book is a springboard for your ideas and inspirations. By sharing her 45-year journey working with children, the author becomes the children's voices.

No matter who they are or what their ability is, everyone deserves to reach for their potential through learning from new experiences, connecting with others, and taking a part in life. Imagine the possibilities. Imagine the potential. The possibilities are there, ready to be developed.

Reviews

An Awe-Inspiring Book: Beyond Expectation into a World of Possibilities is a must-read book. Every story touched my heart and inspired me to keep going. I highly recommend this book to everyone since with this book we learn so much about how to face challenges and to live with hopes. I can not wait to read more from this author. - Parastu A. Mehdawi (Amazon.ca)

Fabulous book. I loved it: I found this book amazing. So well written and full of valuable information. I would highly recommend this book to anyone that is seeking some great understanding. – Helen (Amazon.ca)

A most awesome perspective! Written by someone who has devoted her life for caring and providing support to children and families and professionals. I highly recommend this book for all people especially those who are struggling with how to support our most cherished children. – Rob Donald

[Bailey’s] knowledge and wisdom should be mandatory reading for teachers, parents, and anyone that works with children with diverse abilities, - Parenting Special Needs Magazine

Worth the read. As a parent & educator, I found many parts of this book connected with my experiences & provided new insights as well. - J Woolley

Indie Reader Approved: (Add IR sticker) “... a valuable resource to educators and those in a care-giving role, it is fundamentally a book about connecting with others on a human level – on that basis, its potential readership is a wide one.” Amanda Ellison for IndieReader

Whistler Independent Book Awards review: “The author clearly writes from a wealth of experience. She shapes each topic through case studies, then draws the learning points together at the end of each chapter. What is original is the depth of first-hand experience, from which learning points can be gleaned. You are very clearly learning from an expert in this field. It was easy to read, even for someone like me who is not likely to practice what it teaches. ... But it can clearly be used for higher education.” – Canadian Authors’ Association volunteer reviewer

AWARDS

1. IR approved sticker
2. Bronze Medal Winner for Digital Media: Living Now Book Awards

• Language: English
• Publisher: Tellwell Talent
• Release date: Oct 30, 2021
• ISBN: 9780228865988

Patricia E Bailey

For 45 years, Patricia Bailey worked as an early childhood educator, education assistant, professional storyteller, tutor, academic strategist, and interventionist. She taught language arts and literature for early childhood educators at Langara College in British Columbia and presented workshops at conferences and schools sharing the importance of communication to being fully involved in life. She ran a home-based business providing educational support services for children with diverse abilities and their families.Patricia is able to connect with and speak for children because of her own life experiences. Being an introvert and a highly sensitive person, she picks up on the nuances of non-verbal communication – the subtle looks, the unseen energy, the connections that go beyond the concrete. Having an anxiety and depression disorder helps her understand the students’ difficulties and respect their needs.Patricia lives in Maple Ridge, British Columbia with her husband of 47 years. She has one daughter and three grandsons (one with diverse abilities). She considers herself young even at 70 years old. Her positive outlook and determination recently helped her through two issues with first stage cancer. Nothing stops her from living a full life. There’s still a world of possibilities to explore.

Book preview

Beyond

Expectations

into a world of

Possibilities

Insight, inspiration, life lessons and stories from working with children, teens and young adults with diverse abilities.

Patricia E Bailey

Beyond Expectations Into a World of Possibilities

Copyright © 2021 by Patricia E Bailey

Cover Design by Krystal R.

Cover photo courtesy of iStock.com/Kozielczyk Wojciech

This book is for anyone who is connected to people with diverse needs:

Parents, teachers, therapists, education assistants, behaviour support,

social workers, support and care workers.

The names of people and institutions are pseudonyms.

The stories are from real experiences and real people.

Photos used in the examples have been changed to stock photos

to protect the privacy of the children and families.

PCS and Boardmaker are trademarks of Tobii Dynavox LLC.

All rights reserved. Used with permission.

All rights reserved. No part of this publication may be reproduced, distributed, or transmitted in any form or by any means, including photocopying, recording, or other electronic or mechanical methods, without the prior written permission of the author, except in the case of brief quotations embodied in critical reviews and certain other non-commercial uses permitted by copyright law.

Tellwell Talent

www.tellwell.ca

ISBN

978-0-2288-6597-1 (Paperback)

978-0-2288-6598-8 (Ebook)

Dedicated to:

The children, teens and parents who were my inspiration.

My parents who taught me that we are always growing and learning.

My husband, Carter who supported me and gave me freedom and time to write.

Thanks to:

The reviewers who shared their feedback.

Val Cook

Rob Donald

Marianne Garrison

Linda Raskewicz

Shannon Timms

Special thanks to:

My daughter, Jenna who shared her insights

as a mother and paraprofessional.

Bonnie Chlebek who encouraged me

and reviewed the manuscript chapter by chapter.

Kath Booth who encouraged me

and shared her writing and editing knowledge.

Contents

INTRODUCTION

Chapter 1 - THE POWER of COMMUNICATION

Key Points

Chapter 2 - MIS-BEHAVIOUR or MIS-COMMUNICATION

Key Points

Chapter 3 - SENSORY AND COGNITIVE PROCESSING

Key Points

Chapter 4 - EMPOWERED or POWERLESS

Key Points

Chapter 5 - INCLUSION, INVOLVEMENT and INTERACTION

Key Points

Chapter 6 - EDUCATION and ENRICHMENT

Key Points

Chapter 7 - OUR ROLES and EXPECTATIONS

Key Points

Chapter 8 - FINAL THOUGHTS

Key Points

Appendix A: Kamal’s Personal Dictionary

Appendix B: Nina’s Personal Dictionary

Appendix C: Communication Materials

Appendix D: Amy’s Tech Talk template for her visit to Santa

Appendix E: Social Stories

Appendix F: Proactive Plan Example

Appendix G: Front loading for bus trip

Appendix H: Sam’s Science Fair Project

Appendix I: Lisa’s Activities Chart

GLOSSARY

BIBLIOGRAPHY

ABOUT the AUTHOR

Introduction

Thus, I learned from life itself. At the beginning I was only a little mass of possibilities.

It was my teacher who unfolded and developed them.

~ Helen Keller ~¹

Imagine the possibilities. Imagine the potential. No matter who they are or what their ability is, everyone deserves to reach for their potential through learning from new experiences, connecting with others, and taking part in life. If we don’t see the potential in each person, then we limit them to a life closed off from others and the wonders of learning. Go beyond your expectations. The possibilities are there ready to be developed.

When I first started writing this book, I thought mainly of sharing the experiences and lessons I have learned over the years. But while I researched for accuracy, I was inspired by many people. As I read, more ideas occurred to me. And my learning hasn’t stopped. Talking to people gives more insight and opens my mind to possibilities I might have never considered.

I feel grateful for the opportunity to learn about life and myself over the years working with children, teens, and young adults. It was when I worked in a children’s hospital that I started to realize the potential of every child. When I think about it, everyone starts out being a ‘little mass of possibilities.’ We all know infants’ lives are open to every possibility. Their potential is unlimited. But what about children with disabilities? Possibilities and potential don’t disappear because of a disability.

This book is a journey through the years of my experiences and growth. I’m more than an educator; I’m a learner. The children, teens, and parents who shared a part of their life with me are the teachers and my inspiration. As the years have gone by, my time spent with each of these children seems so short, but what an impact they had on me! For the short time I connected with each child, I was able to see the possibilities and give them a start to being more involved in their own lives.

I discovered that no one looks at the world the same. Not everyone has the innate ability to understand and connect with people who communicate differently or have diverse abilities. So how can we better connect with children or gain the skills needed to see the possibilities and develop each child’s potential?

Although my brain runs from one idea to another, there are more possibilities to discover and directions to go than I can come up with by myself. Ideas come from many sources – co-workers, parents, workshops, research, websites, and the children who are the key to what’s best for them. What I share isn’t limited to specific children or disorders. This book is a springboard for your ideas and inspiration. Together we can make changes and enrich the lives of children, teens, and adults.

My goal is to inspire you to be the best you can be and to give your best to your children or clients, thus enriching the person’s life and yours. We miss out on so much joy when we don’t know what they are thinking. There is something magical when children can connect with us. We see a world of possibilities.

THE LANGUAGE OR EXPRESSIONS IN THE BOOK

Let’s change the language we use. All people have differences. All people communicate differently. So why do we use the terms special needs, disorder, or syndrome. These are only diagnostic concepts to categorize information about what support is needed. The disorder or syndrome isn’t who the person is. ‘Special needs’ is in reference to education (special needs education)², but ‘education for students with disabilities’ is more respectful. The local school district I worked in uses the phrase ‘Learning Services’ which covers a range of educational support.

We should focus on the person first. People are not disabled; they have a disability. The disability isn’t who the person is. The word ‘disability’ is acceptable, but I want to move our minds to ‘ability’. For that purpose, I tend to use ‘diverse abilities’ to encompass all people with various disabilities no matter how mild or complex.

CHILDREN, TEENS, STUDENTS, OR ADULTS

Although I use the words children, students or teens, don’t let it limit you in any way. The thoughts, suggestions, and ideas are helpful to anyone who supports adults as well. No matter the age of our clients, the ideas and stories inspire us to enrich all lives.

RESPECTFUL LANGUAGE

I read several on-line articles about respectful language regarding disabilities. I was surprised to read that people with disabilities don’t prefer to be considered differently-abled. ‘People with disabilities’ is preferred. Giving it more thought, I realized ‘different’ seems to be a comparison to everyone else. In reference to people with disabilities, ‘different’ is a label and seems to denote ‘less than’. Another point in the articles was a disability isn’t being handicapped. A handicap is the situation such as a flight of stairs or a negative attitude that makes success difficult. With that in mind, perhaps a ‘handicapped’ parking space could be labeled ‘accessible’ parking space

To me, the phrase ‘special needs’ evokes the idea of unable or being less than. Each of us is different, but still fall into what we see as being normal, average, or more typical than people with special needs. Just as in any statistical graph there will be a large group that fall in the middle of the graph. But does that mean that those that fall into the outer edges of the graph are less valuable or can’t be involved in the world? No!

One friend said that we’re all disabled in different ways and have our own special needs. We need to learn that we’re not better than anyone else. People with disabilities have so much to contribute. Take time to listen and learn. The children who have been a part of my life have enriched my life and taught me about myself. They’re our teachers – we lose out on so much when we don’t listen to them or involve them in their own lives.

HIDDEN DISABILITIES

Often when we hear the word ‘disability’, we think of people who are physically different. But there are many hidden disabilities that we need to consider too. It may be too much to hope for, but we all need to be respectful and patient with everyone we meet. Shouldn’t that be a universal goal whether the person is an adult or child, has diverse abilities or needs, is from a different culture, or is even someone who annoys us? Be patient. Listen. Be respectful.

When we work together, we create infinite possibilities.

Chapter 1

THE POWER of COMMUNICATION

… all human efforts to communicate – even in the same language – are equally utopian,

equally luminous with value, and equally worth the doing.

~ Ortega y Gasset ~³

Communication differences are vast and varied. The book Men Are from Mars, Women Are from Venus (Gray, 1992) emphasizes the differences between how women and men think and express themselves. At times my husband and I disagree but we’re actually saying the same things from different points of view. Then there are the teenagers. They seem to be from another universe and oh, so frustrating. The reality is that their brains are in a distinctive stage of development. Though we may not understand each other, we’re able to talk. We have a way to express ourselves.

What happens when you have no means of communication? Imagine – you are in bed after breaking your legs in a skiing accident. Lonely, bored and hungry. But you have laryngitis and can’t tell anyone what you want. Frustrated? I would think so. Now think about other forms of communication that are part of our world - autism spectrum disorder, cerebral palsy, selective mutism, hearing loss, or other disorders.

Communication is vital to being fully involved in life and connecting with others. Children should be able to achieve their own, unique potential. Teens and adults should control their own life as much as possible and have an opportunity to express their own opinion. But without a means of communicating, how can they? Sign language, gestures and body language, and augmentative and alternative communication (AAC) give them the needed tools. AAC includes simple communication symbols and boards to high tech devices. It helps the person take in and understand information and goes beyond demonstrating knowledge and language ability. It provides a way to express thoughts and ideas. From simple yes/no symbols to complicated electronic devices, they all make a difference. The result is always the same – having a voice and being able to connect with others.

Subtle forms of communication can’t be dismissed. A look in the eyes and a motion of the body can be powerful expressions if we pay attention. As adults we convey our feelings non-verbally too. Children know when we’re excited, disappointed, or secretive. Sometimes it’s the energy we emit that’s sensed by others. Often my husband senses my feelings before I do. He asks me what’s wrong and makes me aware of what I’m feeling. Being aware of these subtleties in children and ourselves is important. No matter how children communicate, it’s vital to connecting with the world and us.

CAN YOU READ MY EYES?

A simple look can open a world of possibilities.

The early modes of communication are facial expressions and vocalization. A baby can certainly express his needs. A parent can recognize what the different cries mean. And there is definitely a facial expression that says, Get extra wipes out. This is a messy one! Sometimes just the eyes send a message. The quote ‘The eyes are the windows to the soul’ can be phrased ‘People’s thoughts can be discovered by looking into their eyes.’ As a parent and someone who has worked with children and teens, I enjoy watching their eyes to understand what’s going on. If we look into a child’s eyes, we can see so much – being excited or sad, tired or wound up, secretive or sneaky. When a child can’t speak or communicate through alternative means, we need to pay attention to facial expressions and the eyes.

If we’re rushed - and often we are – we’ll miss out on so much. Remember to stop and smell the roses, take the time to slow down and see what’s going on around you. Take time to connect. This was true and relevant for the work I did. I would have missed so much if I hadn’t looked into children’s eyes.

BARRY

I vividly remember the children who taught me that though the body may be imperfect the mind is still active and can be full of mischief. In the 1980’s I started working in an integrated day care at a children’s hospital. The day care had three separate programs for infants, toddlers, and preschoolers. There were more children with challenges than children without challenges. My experience up to this point was working with typical children. The new experience of interacting with children with diverse abilities was an eye-opener and I learned how much actually goes on in the children’s minds.

One boy captured my heart and tickled my funny bone. Barry was four years old, although with delayed physical development, he was the size of a two-year-old. He had limited physical control and no verbal skills. One day I was on a mat with him, working on stretching his legs, when I found him stiffening his legs rather than flowing with me. This was unusual, and I suddenly thought, He’s teasing me! I looked at his face and asked, Hey, Barry are you teasing me? His eyes and face lit up. I could almost hear the laughter in his eyes. A wonderful awakening for me, and an amazing connection.

MATT

Another memorable experience was at Cottondale High School. I was lucky to be assigned to Matt, a grade eight boy with cerebral palsy. Although he had limited muscle control and wasn’t able to speak, he used his eyes to communicate. His parents and the staff at his elementary school shared the communication materials and equipment that he used. There were Picture Communication Symbols (PCS), switches and voice output devices, and an eye gaze communication board (E-Tran). He used a PCS schedule in elementary school but when I started working with him in December the communication system wasn’t set up. To get him involved, I started using the PCS schedule.

When Matt came into the classroom in the morning, we set up the schedule. He looked at the activity symbols one at a time as I talked about them. Then I put it on the chart. The first time we did it he focused on the symbols and smiled. The next day when I wheeled him to the chart, he was shaking with excitement. When I saw his beaming face and excitement, I knew I was right where I needed to be.

Being able to open the world of communication to Matt meant almost as much to me as it did to him. It made so much sense and I was enthused to do even more. The next step was to use a voice output device called BIGmac. We recorded a greeting and what happened during the day, then he pressed it when he got home. It gave him the ability to tell his parents what he did during the day. The parents reciprocated, and he could greet his friends at school.

Matt’s enthusiasm to communicate and connect with others energized me. I felt as though I was the student and he was the teacher. I learned so much about the value and need to be able to communicate. But even more insightful was seeing how powerful he felt when he could relate and connect with people. This was one of many lessons that taught me about the power of communication. Everyone can communicate if we give them a chance.

CHOICES, CHOICES, and MORE CHOICES

Being able to make a choice is a part of life that perhaps we don’t usually think about. Of course, there are times I’d rather not have so many choices – shopping for shampoo or toothpaste sends me in a tailspin. But if our daily life is dependent on others helping us, having a choice is powerful. Having a choice allows us to make our own decisions. A decision is more than choosing an activity, it’s being able to have a say in all aspects of our life. The easiest way to make a choice is a simple ‘yes’ or ‘no’. Whether a nod or shake of the head, thumbs up or thumbs down, picture symbols or words, ‘yes’ and ‘no’ are simple yet so empowering. The individual is in control not others.

MATT

Matt’s parents used thumbs up and thumbs down to indicate ‘yes’ and ‘no’. They asked him a question and he looked at the hand signal to give his answer. This was helpful when I saw him outside of the school environment. I remember one summer day at a local park. I saw him with his support worker and after greeting him and introducing myself to the worker I started a conversation using thumbs up and thumbs down signals. We enjoyed a lengthy interaction. Besides having the conversation, Matt could let me know when he wanted me to go. ‘Yes’ and ‘No’ can be powerful words.

IT’S MY CHOICE

Making a choice isn’t limited to selecting between two items. Choosing expresses preferences and ability to demonstrate knowledge. Having a choice provides interaction and independence. Let’s go back to being stuck in bed with a broken leg and laryngitis. You want to watch your favourite TV show but can’t use your voice, and your friend has the remote control. You are doomed to watch whatever she thinks you might like to watch. Without having the ability to choose, you might end up watching the shopping channel with your friend who has your credit card!

MATT

Matt had difficulty using his hands to make a choice from several picture symbols. Instead, he used his eyes to gaze at the choice. Using the E-Tran, he looked at the picture then back at me to indicate his choice. If I was confused, then he looked at the picture and then at me twice to make sure I understood.

What if what he wanted wasn’t one of the images? What if he wanted to make two choices? Matt figured that one out himself. He looked at the pictures when I talked about the choices. If his choice wasn’t there, he looked away from the E-Tran and then back at me. Later on, I put three different symbols onto one picture to indicate ‘something different’. If he wanted to make two choices, he looked at one then the other before looking back at me. He did it again to make sure I understood him. I think I was as thrilled as he was about ‘talking’ with each other.

Going further, Matt used the E-Tran and voice output devices such as BIGmack and Step-by-Step to be independent and make choices. A good example was using interactive books on computer programs. Using the E-Tran he chose a picture symbol by looking at the picture then looking at me. He matched the picture with the interactive item on the computer. Sometimes it was the same symbol over and over. I may have been bored, but it was his choice. We connected one of his head switches to the computer so he could control the action. The other head switch was connected to the Step-by-Step unit. He let me know if he wanted the next page, a different interactive book, or to do something else. We used a similar setup when he watched a movie video. With the BIGmack he was able to ask a friend to join him. The Step-by-Step phrases included I like that. and Did you see that?

Preparing the materials and setting up the activities took extra time, but it was well worth it. I was with Matt less than two years. I would have liked to further his involvement and education. We could talk about the story he chose and using the E-Tran he could answer questions about what