of "The Color Red"
When Michael was diagnosed, I had to force myself
to read about it. It was depressing and I was hanging on to the
chance that it
just was not true and that someone would tell me it was a misdiagnosis.
Eventually, I accepted that I was kidding myself and that I needed
in the reality of the situation. Once I did that, the obsession
began. I wondered just how much time I could spend on my lap-top
before it would burn itself out. I spent as much time as I could
reading, chances are if it was available via the internet, I have
I encourage every parent who has an autistic child
to read, read everything you can, some of the information is applicable,
not. I eventually stopped reading all the scientific information
as I do not hold a PHD in Chemistry, Biology, Genetics, nor am
MD. I found myself swimming in a pool of information that I could
not apply to day to day functions as a family. I have passed what
happened, who is responsible and except this situation as it is
and have to move passed it. If not, I will miss
even more precious time with Michael. I found that I needed to
hear about other families with Autistic children. I wanted to know
other Mothers and Fathers were coping.
What were they doing for their children, how were their marriages,
how did they manage to get through the day? What were their biggest
concerns, their fears, how were their finances? What was their
What I have found is almost nothing. I found a
few books, some articles, and a few things in magazines. Why, I
wondered? I decided
many months ago, that I have something to say about Autism and
it applications to families and I want someone to listen.
how this book came to be.
Preview of "Autism is a Four Letter Word - LOVE"
When a parent enters the world of an Autistic child, it feels like being taken hostage--as though someone grabbed you when you least expected it--as though someone has you by the throat and there is a gun to your head. Instinct would have you panic and run away. When you try to break free, the grip only gets tighter and more force is applied. If you make a wrong move, a life could be ended or, at the very least, permanent wounds and scars could be left forever.
What you are left with is the constant question: “How did this happen?” I was just living my life, harming no one, when out of the blue, I was grabbed and taken hostage. Like many, my first reaction was to freeze. I know now that when I was grabbed and taken hostage, I should have screamed--screamed as loud as I could and screamed for help! What I have learned these past five years is to be a hostage negotiator, and a good one at that. My negotiation skills came from on-the-job training and time. With them, I have negotiated my life and the life of my Autistic son.
When you hear of a hostage situation, you often hear about the number of people being held. First and foremost was our little Mike, then Jim and me. Our son Ryan was next. Our parents and those who loved us all, our family and friends, were the next victims. Furthermore, anyone who has a connection to our son Mike in any way, shape, or form is also a hostage.
This book is for all who face autism in their lives. It’s for parents, family, friends, teachers, professors, doctors, scientists, law enforcement, and politicians of this great country. If you deal with autism in any manner, you know you can never have too much information. I believe autism is this century’s epidemic. I believe that we, as a country, are unprepared for what this epidemic has brought and will continue to bring. I believe that, with the right people involved, we can make a positive impact on those currently held hostage by autism.
Much work needs to be done for the current and the future autistic. I have faith that this will happen. You see, I have to. I was held hostage by autism. I fight every day to remain calm, not freeze, nor panic when I am grabbed without warning. I must have faith, lest I lose hope.
I have learned to walk defensively with each step of my life. My defense is knowing I am never alone. When I was first taken hostage, I thought I was alone in this world with no help or guidance. I know better now. When autism tries to grasp me tight, I feel the safety of thousands upon thousands of other people who were also once held hostage by autism. When we are having a hard day with struggles in our home, I remind myself of this truth. I know that in another home, somewhere, there is another mother doing just what I am, and she is OK. We find our strength in numbers, and quietly support each other.
Hopefully, a day will come when our quiet voices of support become shouts of unity, and we will work together for our children and the bright futures they deserve to have. We have learned, now more than ever before, the power of unity and what can be done if we fight hard enough for it. The title of this book was decided by my mother Susan.
The title of my first book, The Color Red, came easily, because it was a book about Mike, and Mike was obsessed with the color red. Not so with this book: I was unable to find a title that I thought best described it. I had days when the only title I could think of was Enter at Your Own Risk. However, I decided that might not sell well. After my mother read the manuscript, she was able to see things a different way. She was able to focus on the nature of the book, and the love that went into each and every word. She knows me best: usually mothers know their children better than anyone else. I continually thank her for the love she provides and sees in me.
I hope this book will educate and inspire all who read it. What I have discovered is this. Autism is a four-letter word: Love. And love surpasses all understanding.
All my best to each of you,
Julie J. Jurgens-Shimek
(a.k.a. Mike’s mom)