What about me?: Challenging your new reality raising a "special" child

By Liz Bazarova

"What About Me? Challenging your new reality raising a "special" child" is a self-help book for parents of kids with special needs that primarily focuses on the well-being of the parents. Unlike most of the books about Autism which focus on the kids and strategies for their success, this book helps parents heal from the trauma of their child being different and helps them learn how to thrive in their new reality.

There are countless books about Autism and the medical or therapeutic strategies of dealing with it, but has anyone thought about the parents who are the caregivers? What is their life like? There are so many "special" kids nowadays, but there are just as many, if not more, "special" adults who are raising them.

"What about me? Challenging your new reality raising a "special" child" was written by a mom of a "very autistic" boy who wanted to share her personal experience and advice on how to deal with life-altering challenges when your entire world is turned upside down by your child's diagnosis.

You will find effective tools and techniques for managing your new reality and healing yourself amid a constant fight for your child's well-being.

• Language: English
• Publisher: BookBaby
• Release date: Jul 24, 2021
• ISBN: 9781098368654

Book preview

Title

© 2021 by Liz Bazarova

All rights reserved. This book or any portion thereof may not be reproduced or used in any manner whatsoever without the express written permission of the publisher except for the use of brief quotations in a book review.

ISBN: 978-1-09836-865-4

TABLE OF CONTENTS

Part 1

Introduction

Part 2

Facing Life

Coping Mechanisms

Dreams versus Reality

Stress Levels in Parents of Children with Autism

The Guilt Is Real

Blaming Others

You Gotta Be You!

Part 3

Health

Physical Health

Mental Health

Spiritual Health

Energy

Part 4

Take Control of Your Life: Responsibility

Responsibility versus Expectations

Expectations versus Standards

Part 5

Your Bright Future

Create a Vision

Actions and Commitment

Part 6

Ok, So What about My Child?

Is There a Cure for Autism?

Ok, So What Else Can Be Done?

A Different Approach to Autism

Alternative Methods of Correction

Treatments and Therapies

What’s Next?

References

Part 1

INTRODUCTION

We are our kids’ advocates. If not parents, who will speak up for them? Who will show them that they are allowed to have a voice and are worthy of using it? I perfectly remember myself in those dark times when I was wearing sweats every day, everywhere to avoid getting any more attention. Or when my gaze was firmly focused on my shopping cart, and I wasn’t looking any stranger in the eyes. I wanted to disappear, not to be seen. I felt like everyone was staring at me, judging. Judging because my kid was loud, was grabbing everything—and sometimes randomly touching strangers. In a grocery store, he would throw a bottle of spices and break it into pieces, would start chewing on a chocolate bar while I was trying to check out (yeah, the one we weren’t going to buy). I kept doing what I had always been doing—apologizing. I was constantly apologizing. Apologizing for my child being loud—he wouldn’t listen to anyone, including me. He would break things often and eat inedible items. Our next-door neighbors are still knocking at our door at least twice a month asking us to calm our kid when he is hitting the wall. It is hard to understand that a child is not listening to you. Not like throwing-a-tantrum not listening, but actually not being able to understand direct speech.

Remember that episode from Game of Thrones in which Cersei walks her walk of shame? Everyone was screaming, Shame! Shame! Shame! I kind of felt that way. I thought that they all stared, all judged, that they all thought, How can you be such a horrible mother? Such a horrible person? You are to blame for your child’s behavior! You suck!

Voices in my head kept telling me how I had let my son down, how I was to blame for his autism. It might sound like nonsense to most, but the first thing I did when I learned about his condition was to try to understand where I had messed it up. I thought he had done nothing wrong to deserve it all, my pure little angel, but I had done it to him. I was guilty in so many ways and was constantly finding the areas where I had made it happen to him. Have you heard about the concept of the baby feeling all of his mom’s emotion while in utero? I strongly believe in it, because apart from the metaphysical part, the mom and the baby are sharing his mom’s hormonal cocktail. I was dumb enough to be so stressed and emotionally wrecked during pregnancy that my baby decided to close himself to the world because he couldn’t handle my emotions. How could he? He was the size of a lemon or another fruit; when I couldn’t handle it myself, why did he have to? How could I have been so selfish? How could I blindly trust doctors who prescribed me antibiotics and a bunch of other medications without legitimate reasons, just to be safe? Safe for whom? For their license, if something goes wrong? Without even thinking of potential dangers for my son’s brain health? How could I blindly follow their directions? Why hadn’t I chosen a different doctor? Why did I smoke weed the first time in my life right around the time my son was conceived? Why was I so reckless and unprepared for pregnancy, emotionally and physically? Those types of thoughts were on repeat in my head. Anywhere I went, they would become louder. On playgrounds I felt that no one wanted to play with my kid, and their parents judged me too since my child played so differently and showed no interest in other kids. I felt like I was messing up all the time. And I kept rushing home, to my little safety nest, where my child was free to be himself, and I was free too, to the point where the voices were back and loud again, shaming and blaming me for all of it.

I am beyond grateful for my best friend, who was the only one being openly honest with me and one day told me, Liz, stop wearing your stupid sweats and dirty ponytail; you look bad! That was so refreshing! Don’t get me wrong, it sounds harsh, but she cared and knew me well enough to tell me the truth. It takes some courage, you know, to say it to a person in a difficult life situation. I know that other people tried to be supportive and understanding, giving me space and time. My mom would say, You are doing great for what you are going through! Thanks, but that is not so helpful, Mom.

I know, I know, many of you will feel resentment for such a rude comment. For me, it was the first time someone said something honest to my face. I assume it is how dying people are treated: like you are about to break, like you are not capable of being treated normally and equally. I did not feel good or normal—I didn’t feel like myself—but everyone around me was telling me how great I was, so I stopped questioning myself. I just turned into a very blank and lifeless version of myself. When my friend finally told me the ugly truth, it became my wake-up call—I went to the mall and bought jeans! I would be lying if I told you I was immediately grateful and happy about it. At first, I thought that she just wasn’t used to me being all grown-up and responsible. But then I asked myself, Has she ever done anything to hurt me? No. She always saw me as someone who was capable of moving mountains and overcoming anything. And she didn’t fall into the be nice to poor Liz game. She knew me at my best, loving clothes and pretty things, loving life and everything about it. And that wasn’t me anymore.

I just decided to trust the only person at the time who saw me big and strong. So I rolled with it. You know, start small, right? I still remember when I got those light-blue jeans—cropped on the bottom with several holes—and put them on. I felt so sexy and empowered! But when I wore them outside, it took me a little while to get used to it, because now I felt that people also judged me for putting so much effort into my looks while I obviously sucked at taking good care of my kids. Looking back, I am wondering what was up with me and my mental condition at the time. Since when did jeans mean all that? It was just jeans! I wish I were the only mom with a different kid who thinks something similar.

Do you want to hide from the whole world? Do you want to escape to a world of TV shows or books? Or do you feel you want to disappear because the pain is just so real? And because even though you think it cannot get any worse, for some reason, every new day is darker than previous? And sometimes you think, Oh, today is not that bad, but the next day hits you even harder than you could have possibly imagined? Or maybe you think you can numb it with another book, episode of a show, unhealthy food, or alcohol? I feel you. I’ve been there. Sometimes I wonder what would have happened if I weren’t nursing my younger son at a time. Would alcohol have become my remedy? Since alcohol wasn’t really an option for me at the time, I got overly focused on ways to fix things and do everything I could to make him better, searching, doing all I could to find a solution. Yeah, that’s what happened: I couldn’t process it completely and accept my child and my situation; I tried to fix it. And that’s when my child turned into a problem I had to solve. Looking back, I want to scream: Girl, go get some sleep; you don’t need to do it all tonight, when you are already sleep-deprived, with an infant and autistic toddler. Give yourself some love, eat well, and go on a walk! But of course, I wasn’t doing that. I couldn’t—because any free time by myself would make me face my demons, feel the pain, feel like I was running out of time. So I kept myself crazy busy. Constantly. When my head finally touched my pillow, I was out. No pain. No demons. Just tired and stressed all the time. On the bright side, I was too busy to consider other ways out of such an unpleasant situation and feel the whole range of emotions that lead to more serious mental conditions. Let’s not forget I actually learned quite a few alternative treatments for my son.

We need to be saying to ourselves, You are strong. You can handle it. You will be ok. The sun will rise. It won’t always hurt like this. You deserve to live your life fully. You deserve to be happy. You deserve to thrive. You deserve to enjoy parenthood. Your child is perfect the way he or she is. Your heart is big enough. You can do it. Because it is true. It is your real voice. You are born to be great. The other voices? They are just fears and traumas feeding off your pain, insecurities, and self-doubt. And guess what? If there is nothing to feed off, they will disappear, and you will hear your true self and become what you are meant to become—great.

***

You might be going through something similar or completely different, but you are probably not in the most fabulous place in your life if you decided to read this book. I want you to know, even if we have never meet—I am here for you. I am writing this book for you. When I was thrown into my mess of a situation, I would’ve really appreciated a friend. A friend who would just be there for me, not judging me and telling me where I have messed up. I didn’t need anyone providing me with a speech about Einstein being autistic and my son being the next Einstein. (Yeah, it is a great story, but how many actual Einsteins are out there?). I didn’t want advice on how to raise my child or to not be invited to playdates (that was cold, duh). I would have really appreciated a friend who was a little more experienced and knowledgeable, a friend who would not avoid hard questions and hard answers, a friend who cared but didn’t pity me—and blessed me. A friend who was honest and understanding.

When I was eight months pregnant with my second son, we went to a children’s psychologist. I remember her not looking me in the eyes and trying to sugarcoat her recommendation for my older son to see a psychiatrist. (At the time we were in Russia, where autism could be diagnosed only by psychiatrists.) And then that psychiatrist, avoiding the word autism and telling me to bring him back when he was three (he was two-and-a-half; everything was pretty obvious for them, but they are not allowed to diagnose anything before the age of three). Then déjà vu with two different neurologists and several other specialists.

Like, really? Do you know what is worse than being pregnant with another boy and finding out that your older son is most likely autistic? Being eight months pregnant with another boy googling information by yourself and seeing millions of other diagnoses, each one worse than the next. Seeing statistics for boys versus girls and siblings, all alone in your fears and overwhelming hormones. I couldn’t find support in anyone around me when I needed it the most. Well, after all, it doesn’t matter how many family members you have around; you most likely are feeling alone, because they feel like they were hit by a bus as well.

Looking back, I see a scared girl who was unprepared for what was to happen, and I see my path ahead of me—all messy and bumpy; my wish is that no one else goes through life like that. I wouldn’t wish the amount of pain or struggles I went through on my worst enemy. Right now my life is not all that bad, but seeing how I got to this point is truly eye-opening. What happens to other parents of special needs kids? Are they ok? Is there anyone to support them? How are they dealing with all of that?

I’ve seen so many parents of newly diagnosed kids, or those in the process, and all of them have this lost look that I once felt and had. When you are so sad, you don’t know what to do next; you are so overwhelmed with guilt, so you don’t listen to your inner voice anymore. Maybe some of us have lost faith; some, loving partners; some, the grounding under our feet. It all hits us way too hard and way too suddenly. The rare moments when you see a family who is handling it well, you want to ask how they are doing it. Is there a magic trick? Is there some sort of secret? Yes and no. There is no magic trick or secret recipe that will make all the bad feelings disappear. But there are common reasons behind our inability to process it properly. There are reasons why we cannot seem to get our life back on track. There are blind spots that are painful to look at and even harder to accept.

For me, the primary purpose of this book is to open your eyes to take a look at the current situation differently and hopefully from the position where you can make things better. Some information might not be the most pleasant and might require work from you. But I also guarantee that you will see the results of this work. There won’t be magical rituals like dancing under a full moon to heal your child, but there will be enough instruments for you to start healing your soul. Your heart may be broken, but it doesn’t mean you cannot mend it. It will get better one day, I promise.

I came across a great quote recently by Hannah Gadsby, and I hope it will give you some inspiration for moving further with this book: "There is nothing stronger than a broken woman who