Autism E-Book

Josi Boccoli

• Herausgeber: Unipro
• Kategorie: Ratgeber
• Sprache: Englisch

Seitenzahl: 182

Veröffentlichungsjahr: 2024

Beschreibung

In this book, Josi Boccoli recounts her journey from the moment her son Gabriel was diagnosed with autism—her tears, fears, conflicts, dependence on God, and faith. With great sensitivity, the author guides the reader to see autism from a different perspective and reveals what helped her understand what was happening, enabling her to love and support her autistic son. A fascinating book!

Leseprobe

Copyright © 2019 by Unipro Editora

All rights reserved. No part of this book may be reproduced or transmitted in any form or by any means, electronic or mechanical, including photocopying and recording, or by any information storage and retrieval system, without permission in writing from the publisher.

Scripture taken from the New King James Version®. Copyright © 1982 by Thomas Nelson. Used by permission. All rights reserved.

Editorial coordination: Sandra Gouvêa

Copyediting: Raquel Souza

Art direction: Paulo Junior

Project and layout design: Duda Steola

Typesetting: Willian Souza

Cover design: Duda Steola

Cover photo: Andrew Berenguer

Editorial assistance: Talita Valentin

Ebook version: Ricardo Rodrigues

B664a

Boccoli, Josi

Autism: Understanding is the key to loving and helping / Josi Boccoli – 1. Ed. – São Paulo : Editora Zelo, 2024.

ISBN 978-85-63103-19-2

1. Autism. 2. Self-help. 3. Family. I. Title.

DDC 158.1

V.1007/24

ISBN 978-85-63103-11-6 (físico)

Zelo Publishing is a brand licensed to Unipro Editora.

Rua João Boemer, 296 – São Paulo / SP

CEP: 03018-000 – Brasil

[phone]

unipro.com.br

[email protected]

Acknowledgements

When I prayed and said, “Lord, use me and do with me whatever you want,” I had no idea that this would mean breaking me completely. To break and rebuild, to establish and bear fruit—this was the unexpected journey. Throughout the entire process, God’s presence was unwavering, and therefore, all the honour, glory, and praise go to Him. Every line in this book aims to showcase His power.

My heartfelt thanks extend to my husband, Gustavo—my love, best friend, and companion on this journey of faith, reconstruction, and perseverance—for his enduring support, love, and trust in the care of Gabi.

To my son, Gabriel, who teaches me so much about living in the purest and most genuine way, just as God made us. With you, I discovered unconditional love and understood God’s true love for us.

A special acknowledgment to the esteemed Mrs. Ester Bezerra and Bishop Edir Macedo for embracing autism and Gabi with so much love.

I express gratitude to my family, who never judged Gabi. On the contrary, they always did everything they could to make us feel supported during Gabi’s crises.

A heartfelt thank you to my dear Cristiane Cardoso, who, in 2013, suggested I write this book. At the time, I still found myself in a dark tunnel, unable to help anyone. Her words made me pause and reflect: if she saw me in a position, then... how did God see me? A phrase, an idea, and a different perspective that enabled me to stand up, understand God’s plan, and assume my responsibility. Thanks!

To my beloved sister Ellen, who, after one of Gabi’s most challenging stress attacks, found me sitting on the floor in tears, utterly devastated, and said, “Josi, don’t cry. You’re strong. You’ll overcome this, and you’ll still help a lot of people!”

The words of Cristiane and Ellen left an indelible impression on me—and they continue to strengthen and inspire me to this day. Understand that, just as they were used by God, you too can be a vessel, impacting others through your words to encourage and assist parents and families of autistic individuals. Leave your mark on someone’s life!

You are not reading this book by chance. You are reading it to help yourself and contribute to transforming other people’s lives.

Contents

Foreword

Prologue

Introduction

Part 1 - A different reality

Chapter 1 - Warning signs!

Chapter 2 - Types of autism

Chapter 3 - The discovery

Chapter 4 - The penny had to drop

PART 2 - From inside out

Chapter 5 - A new Josi

Chapter 6 - Diagnosis

Chapter 7 - Be the mother your child needs

Chapter 8 - No expectations, no disappointment

PART 3 - New phases, new experiences, and new lessons

Chapter 9 - Habits

Chapter 10 - Changing schools and starting primary school

Chapter 11 - Prepare your child for life

Chapter 12 - Gabi’s day

Chapter 13 - Can football be played?

Chapter 14 - And what about marriage?

PART 4 - Considering your weaknesses doesn’t mean accepting them

Chapter 15 - Learn to distract them

Chapter 16 - Selective eating and autism

Chapter 17 - The importance of animals in the life of autistic individuals

Part 5 - Autism and faith

Chapter 18 - The power of prayer

Chapter 19 - Pre-adolescence and the Holy Spirit

Chapter 20 - Necessary deserts

Chapter 21 - Gabi’s currency

Chapter 22 - The cure

Chapter 23 - The reward

Epilogue

Testimony of Gustavo Boccoli

Photo album

About the author

Foreword

I had no idea what autism was until I delved into Gabriel’s story up close. To my surprise, I unearthed an inexhaustible treasure when I grasped the essence of autism. Many tend to fixate on the challenges and limitations of autistic individuals, overlooking the virtues that are often rare in human beings. The autistic person embodies sincerity, purity, transparency, and an unwavering belief in what they are told. They uphold their word with honour, expecting the same from others.

During the days spent with Gabriel and his family, Ester and I, guided by the Holy Spirit, gained profound insights. The experience imparted a valuable lesson: the sincerity, transparency, and commitment to one’s word exhibited by the autistic person reflect the way God desires human beings to treat His Word.

God seeks individuals with a faith akin to what we might term “autistic in faith”—those who are sincere, pure, transparent, and honour their word. Such character is what God looks for in people serving Him.

Within the pages of this book, Josi shares her journey from the moment of Gabriel’s autism diagnosis—her tears, fears, conflicts, reliance on the Holy Spirit, and unwavering faith. I invite you to immerse yourself in this narrative, confident that your understanding will deepen. Much like my experience, you are bound to discover an inexhaustible treasure!

Bishop Edir Macedo

Prologue

It wasn’t an ordinary day. We were geared up for an incredible trip, and I eagerly anticipated reuniting with dear friends and family in Brazil. It had been a while since my last visit, and I made sure to be well-prepared, buying gifts and packing everything needed for the journey.

As Gabi and I strolled through Tel Aviv airport, having checked our bags and bid farewell to Gustavo, the only missing element to enhance the moment was my husband’s presence. Unfortunately, he could only join us the following week. I worried about how Gabi would handle this setback, but to my surprise, he was just as excited as I was about the trip.

Everything seemed fine, until moments before we boarded the plane. On the path connecting the lounge to the aircraft, Gabi turned to me and posed the question that sent shivers down my spine:

“Where is my father?”

Confused and apprehensive about my son’s reaction, I tried to remind him that we had just said our goodbyes.

“He’s travelling to Brazil next week, as we had already discussed,” I replied.

One sentence.

One millisecond.

That was enough.

My son spiralled into a crisis. I was in shock. No matter how much I tried to control it, it seemed impossible! He screamed, cried, threw himself on the floor, and his strength was so intense that he almost tore my clothes while I attempted to restrain him. Passers-by looked on in disbelief.

Embarrassed, but with no alternative, I couldn’t stop Gabi. Finally, everyone boarded, but the departure was delayed because of us. Exhausted, I had to accept help from the flight attendants. They secured him, placed him on a cart, and got on the plane.

I never imagined I would see my son restrained like an untamed beast.

I felt ashamed, humiliated, and devastated.

Introduction

I’m Josiane Boccoli. I got pregnant at 28 without the need for treatment, experiencing a peaceful pregnancy with medical follow-up and advanced 3D ultrasounds. However, my childbirth was remarkably traumatic. After 21 hours of contraction, already in the hospital, my water broke suddenly, like a waterfall. Devices beeped, doctors and nurses panicked, and I was swiftly anesthetised for an emergency caesarean section. I could only see my son’s face the next day.

Gabriel was born on February 25, 2006, in Haifa, Israel, weighing 2.8 kg and appearing perfect!

Four days later, we left the hospital in good health. He reached typical milestones, crawling at 6 months, walking at 1 year. He was smart, affectionate, active, and slept well—no difficulties until he was 1 year and 8 months old.

It was at that time that my husband and I thought that, due to his limited interaction with other children, always being surrounded by adults, he might not know how to play with them. So, we decided to enrol him in a school for two hours a day, providing him with an opportunity to play and engage with other children. We chose Haia Nursery because it’s conveniently close to our house, and there’s a little friend Gabi already knows.

Initially, he cried a lot, resisting the idea of staying there. He went through the adaptation phase, and after two months, the school director requested a hearing test, noting that he didn’t look at people when they called him. It seemed worth checking. I had noticed this too; occasionally, when called, he showed no reaction. It was as if, on certain occasions, he simply ignored me, and because it happened sporadically, I didn’t see it as a significant issue.

A week later, we went to the child assessment centre, and his hearing test results came back as “normal”.

“Phew,” I thought, “Thank God he doesn’t have any hearing problems, but... why doesn’t he respond when we call him?”

This uncertainty persisted for years. Time passed, he grew older, and we expected him to follow simple requests, like turning off the TV. However, that never happened. We asked once, twice, three, four times, and nothing! Until we had to turn it off ourselves, and then he reacted with cries, screams, kicks, and throwing himself on the floor. It was as if we hadn’t spoken until then, and suddenly, we showed up and turned off the TV without warning.

We couldn’t comprehend it. The same reaction occurred with putting on his trainers, leaving the house, taking a shower, going to the bathroom, brushing his teeth, getting in the car—anything. As my son grew older, living with him became more challenging. We couldn’t understand what was happening. Despite being a preschool teacher and caring for many children, I was sure something was wrong, but I couldn’t pinpoint it.

I never discussed it with others, let alone with my husband. Still, I observed Gabriel closely to identify the problem. When he turned 3, I noticed he spoke very few words and consistently pronounced them incorrectly. It was challenging to understand him. When he asked for something, it took us a while to figure it out. “This? That?” By the time we guessed, he was already upset, screaming, lying on the floor, hitting himself, and crying. When we provided what he asked for, he rejected it and didn’t want it anymore.

At this point, my nerves got the best of me, attempting to calm him down in the wrong way, exacerbating the situation. My husband tried to help, but he, too, got stressed. When one of us finally managed to calm him down, we were left with a tremendous headache, and after a few seconds, Gabi fell asleep, sleeping soundly.

We hoped things would improve over time, but the scene repeated itself five, six, seven times a day—an absolute stress for the three of us. Often, we found ourselves dishevelled and sitting on the floor to prevent him from getting hurt. Whether at home, in the market, at the mall, on the plane, in church, or on the street, there wasn’t a specific place or situation we could avoid. We simply couldn’t understand why this happened.

As Gabi slept after each crisis, he started sleeping a lot during the day, making him less sleepy at night. He only slept after 1 am, and as a result, he couldn’t wake up early for school. He arrived between 9:30 and 10 in the morning, which the educators didn’t appreciate, as he missed snack time and playground activities.

Little did they know that I didn’t care much about the playground; I just wanted him to be like all the other kids.

Part 1

A different reality

Chapter 1

Warning signs!

When Gabriel was 3 to 4 years old, those were the most challenging months of our lives. In addition to everything I’ve already mentioned, the night-time crises began. After three hours of sleep, he would wake up screaming, crying, disturbing the entire neighbourhood. It seemed like he was having a terrible nightmare, but with his eyes wide open. Nothing could make him wake up or calm down. We tried everything: praying, hugging, talking, attempting to wake him up, wetting his face, bathing him, scolding him, offering water, turning on the TV, playing music, taking a ride in the car, activating toys with lights and sounds, singing, calling him to play ball, shouting, and crying together. Yet, more often than not, sitting on the floor and waiting for the episode to pass until he slept again was all that remained.

My neighbours even considered calling the police, wanting to know what harm we did to him every night.

We went back to sleep, and suddenly... again the scream, the fright, the jumping out of bed and running away. There were days when we woke up to these screams three, four, five times in the same night. The sun would rise, and there we were, Gustavo and I, like zombies in Gabi’s room, looking at each other without knowing what else to do. When we endured three consecutive nights like this, our bodies couldn’t take it anymore.

I started living like my son, waking up late, taking naps throughout the day, having no set mealtimes, and waking up to his screams in the middle of the night. We ended up moving to a house with an isolated room, where Gabi and I slept on the days before Gustavo’s games, ensuring he could rest well for his work. I can summarise this phase in two words: exhaustion and stress. ‘We only managed to avoid becoming slaves to this routine thanks to our faith, a topic I will delve into more in the next chapters.

Anyway, everything became challenging to do in Gabi’s company.

Afternoon in the park

One afternoon, I took him to the playground near my house. More children were playing, and he interacted well with them. There were three different slides, and they stayed there, sliding for a long time, until their parents called them to leave. They got down, said goodbye, and left. I took advantage, called Gabi, and stood there waiting for him to come down, but he wouldn’t!

I called him multiple times, offered chocolate, rewards, promised to take him somewhere else, threatened to leave, and nothing worked. I walked away and hid, trying to make him afraid of being alone and coming down, but even that didn’t help! It got dark, and we were still there in the park: me at the bottom, and Gabi at the top. I sat down and thought, “What now?” My husband was out of the country for work, and I was alone. I started crying and asked God for help. I waited for a long time, and suddenly, when it was late at night, just like that, he came down, looked at me.

“I’m hungry!” he said.

It was as if nothing had happened, and I had been sitting there until that moment, waiting happily and comfortably, without having called him even once.

Five hours had passed, and I confess that I was angry with him. I came home fighting, complaining, and trying to understand why he did this to me, leaving me there calling and waiting in the cold of the night, and coming down just because he felt hungry and not because I had called him. Gabi heard everything, getting more agitated with each of my words, until the crying began and then the screaming and shouting, to the point where he threw himself on the floor and was struggling.

I didn’t understand him, and today I’m aware that I only worsened his condition with my wrong reactions.

The same situation repeated itself several times on courts when I took him to play football, and he didn’t want to leave. I stopped taking him to the court because I didn’t know how to get him out later.

Strolling in the mall

Every child likes to go to the mall, but Gabi didn’t. We walked in, and he was already jumping from one bench to another in the hallway, making me hold him still as everyone watched. The longer I held him, the more he shook.

All it took was a simple oversight on my part while looking in a window, and he would disappear. Countless times, I looked for him like crazy in stores, and when I found him, with my heart racing, he was on those very colourful and noisy toys for placing coins or in front of a television watching football. Sometimes, I would arrive hugging him, happy to find him and hoping to receive the same affection, thinking he was also looking for me, but no. He complained and said that I was disturbing him, without even realising that I was gone and that he was lost. Other times, I stopped next to him, and he didn’t even notice I was there.

Only after a while did he look at me and say, “Let’s go.”

Birthday party

It was the birthday of one of his best friends at school. We bought the gift together, got ready, and when we arrived at the long-awaited party... Oops! Gabi got stuck at the door. He just got stuck and wouldn’t join the party. The birthday boy came to him, took the gift, called him, and nothing! The little friend’s parents did the same, and nothing! Gustavo and I tried to convince him, and nothing! Other friends called him, and nothing! We tried to carry him on our lap, and nothing! We thought about leaving, but he didn’t want to go.

Finally, we placed two chairs next to the door, sat down, and sat there telling him all the games the entertainer was playing with his little friends. He would go to the door, look, and come back.

Parents watched us. Some said he was very angry and spoiled, while others laughed or looked at us with pity. How that look hurts! How embarrassing it is for us to feel this judgement of being “bad parents”.

When the party ended, and the room was almost empty, we decided to leave, and then he entered. He looked around, ran, ate snacks, and played with the birthday boy happily, as if all his friends were still there.

The same situation happened at school parties. At every performance, he kept his head inside my shirt and wouldn’t let me go anywhere. I wanted to disappear! Not to mention the houses of relatives and friends and even restaurants, where Gabi spent the entire dinner sitting under the table, shouting at anyone who looked at him.

These are just some of the difficult moments we went through with Gabi. It would take too long to list them all here.

However, in conversation with a psychiatrist, she told me that most of her autistic patients ended up being isolated from the world, as their parents, tired of being embarrassed or judged, ended up choosing to go out without them, as if that would solve the problem. I tell you one thing: this may be the easiest and most desired way out, because you get rid of the shame and, apparently, it “protects” you; however, know that by doing this, you will be condemning your child to seclusion, or rather, exclusion from the world.

Your child’s future is in your hands: either he will have a life integrated into society, with rights and duties like any other person, or he will live in a closed room, between four walls, anchored and trapped inside himself without even understanding himself. Make your choice.

If your option is to help your child break out of the cocoon and fly, then we are together! Believe that yes, it is possible to change this situation and have your child living normally with other people like any other child. If I can do it, you can too.

In the next chapters, I’ll tell you how we managed to overcome each of these behavioural problems together. But get ready because many changes will come—starting with you!

Chapter 2

Types of autism

According to the doctors who evaluated Gabi, my son was diagnosed with autism spectrum disorder (ASD), a condition covering various aspects of child development and exhibiting itself in different degrees of involvement; hence, it is referred to as a “spectrum”.

The range of autism spectrum diagnoses is vast, as the disorder can manifest different characteristics in each case. It has no visible presence on the skin or in examinations; it is strictly behavioural. Therefore, assessment is conducted through observation and must encompass:

A detailed history from the parents.Evaluation of psychological development.Comprehensive communication assessment.Assessment of skills related to activities of daily living.

Gabi underwent hearing, vision, cognitive, and motor development tests, karyotype with fragile X research, electroencephalogram (EEG), and magnetic resonance imaging (MRI). In all cases, the results were normal.

Currently (and I emphasise currently because we are constantly changing and evolving), an ASD diagnosis includes three main clinical conditions:

High-functioning autism or Asperger’s syndrome: