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Parents' Guide to Early Autism Intervention
Parents' Guide to Early Autism Intervention
Parents' Guide to Early Autism Intervention
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Parents' Guide to Early Autism Intervention

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This book is intended to help other parents who are currently in the situation we were in. Our baby, only one year old, was discovered to have developmental delays. We knew nothing about autism at this time but was urged by knowledgeable friends to get him evaluated. We followed through and did not wait. As a result of his evaluation he was placed into an early intervention program with the Lanterman Regional Center in Los Angeles, California. He is eight now and still a client at Lanterman. This book is about his first five years in the autism system. It explains our experiences with those first few at-home therapies, his first speech therapy, his OT evaluation, his first IEP, and kindergarten. During these transitional years (our transition from typical parents to autism parents and his transition from typical kid to autism kid) we had a huge learning curve, the learning curve for autism is mind boggling! We threw ourselves into helping our son and learning all we could and keeping on top of his services and his intervention. This book documents the good and the bad during this time. I intend this book as a learning experience, and hopefully your road within the autism system will be smoother.

LanguageEnglish
Release dateMay 12, 2011
ISBN9781458171054
Parents' Guide to Early Autism Intervention
Author

Kimberly Kaplan

Author and mother of an autistic boy. I wrote about my passion, autism, in "A Parents' Guide to Early Autism Intervention," which is a useful guide for parents who are just beginning their autism journey. Another source for autism-related information came from writing my autism-related blog on the website, ModernMom.com. This lead to another book that I recently published called, "Two Years Autism Blogs Featured on ModenMom.com." My second published ebook is a fantasy called, "Max and The Happy Prince." Max is a crane who cannot fly, but must learn to take to the sky in order to save a town trapped by an evil witch. My third ebook is "Warsaw Freedom," the story of two Jewish women who are smuggled out of the Warsaw Ghetto during World War II. I am the author of screenplays that include "Warsaw," "Max and The Happy Prince," "Winningdale," and "Mystery Shop Wedding." I am a produced screenwriter with credits "Don't Fall Asleep" (Amazon, Itunes), "Safeword" (due out in 2012), and my autism-related film short, "Autism and Cake" starring Ed Asner who plays a grandfather who struggles to accept his autistic grandson. I blog on the website www.modernmom.com weekly, tweet on @tipsautismmom, and you can find me on LinkedIn.

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    Book preview

    Parents' Guide to Early Autism Intervention - Kimberly Kaplan

    A PARENTS’ GUIDE TO

    EARLY AUTISM INTERVENTION

    By Kimberly Kaplan

    Copyright 2011 by Kimberly Kaplan

    All rights reserved

    Published by Kimberly Kaplan at Smashwords

    For more information or questions visit my website

    kimberlykaplan.com

    or contact tipsautismmom@yahoo.com

    SMASHWORDS EDITION, LICENSE NOTES

    This ebook is licensed for your personal enjoyment only. This ebook may not be re-sold or given away to other people. If you would like to share this book with another person, please purchase an additional copy for each recipient. If you're reading this book and did not purchase it, or it was not purchased for your use only, then please return to Smashwords.com and purchase your own copy. Thank you for respecting the hard work of this author.

    THANKS:

    Michael - For your support

    Louise - Friend, Editor Extraordinaire, Cheerleader, #1 Fan.

    Andy - You pushed us from the beginning, we can never pay you back

    Jenn - My #1 resource who told me, Educate and empower yourself.

    Stephanie - Our son's girlfriend You are truly extraordinary.

    Tess - 'Cause I know you'll bug me if I don't thank you!

    Pam E., Pat F., Phillip Hain, Santina, Yudi, and Ana

    David Beukers

    Bubba - I am amazed by you every day of my life. Always be yourself!

    Foreword by David Beukers

    1990 was a very lonely year for my mother. I was three years old, my younger sister Kristen already was here, and my sister Staci was on the way. My mother had all the hopes and dreams that any mother has for her children.

    It was not long before this that Mom had noticed I wasn’t like the other kids. I tended to play by myself more often than not, fascinating myself with the spinning motion of the wheels of my toy cars. I could recite Bert and Ernie dialogues from Sesame Street completely and flawlessly, but I could barely answer a simple yes-or-no question.

    When I did speak to others, it was in a sing-song manner, with vocabulary that nobody uses in conversation, let alone a toddler. Eye contact was difficult, body language was near impossible to interpret. I was practically a walking, talking robot, with little ability to communicate with those outside of myself.1990 was the year I was diagnosed as a high-functioning autistic. What was a mother to do?

    It was an enormous struggle for my mother to find information on the subject back in those days. Her only resources were doctors, small parental groups, and the few relevant books and articles she could get her hands on. Autism was not very well understood. Society was just barely getting out of the era when people like Mom would have been considered refrigerator mothers. Even a pamphlet she saved from my early days had these words printed in bold type: Autism is not caused by a poor relationship between parent and child.

    It was a struggle for Mom to get me a proper diagnosis in the beginning. (My first doctor diagnosed me as a childhood schizophrenic; fortunately, she got a second opinion.) Then she had to find me proper intervention, and get a proper Individual Educational Program (IEP) developed. IEP’s are the programs school districts create for individuals with special needs. Beyond that, think of the social isolation she had to endure on my account! If doctors couldn’t understand it, how could other parents?

    But she carried on regardless. She fought that uphill battle to get me the help and understanding I needed.

    Now, here I am, 20 years later, writing to you. I have many wonderful friends, I have a Bachelor’s degree, and though the economic woes of 2010 may have me living at home, they are not the woes of 1990 that could have prevented my independence. I’ve come to a place where my communication with others is truly two-way and appropriate. I can read the intentions of other people, through facial expressions, body language, intonation, the context of the moment. And although this has been an uphill battle for me too with its share of hard knocks (i.e., being ignored, being laughed at from time to time, etc.), I can’t think of that battle as having been anything but good for me.

    It made me stronger, forced me to understand and empathize with the people in the world around me. It made me who I am today, and to think it all started with the struggles of a very new mother, who, in spite of all the odds against her, wanted her hopes and dreams for me to prevail.1990 may have been a lonely year for my mother, but this year doesn’t have to be lonely for you. A wealth of services and advocacy organizations exist today, and an awareness of the condition pervades our society. Think of all the other parents like my mom who’ve come before you, paving the path and spreading knowledge along the way.

    That's why I’m glad you’ve picked up A Parents’ Guide to Autism Early Intervention. They say a journey of a thousand miles begins with a single step, and if this is your first step, then you’re in luck. You are about to receive many years’ worth of the best information and experience out there, all distilled in a single source by the knowledgeable Kimberly Kaplan, who writes on the subject like only a mother can. This book will be a most excellent guide to all the pitfalls that may line your path, and to all the springs of wealth waiting for you to tap into along the way.

    I want to take this opportunity, before you launch into the book, to point out what I feel are the most essential elements of you and your child’s journey, elements that are easy to take for granted in the noise of everything else. The IEPs and the language specialists, the motor therapy and the music therapy, and the gluten-free/casein-free foods—these are all trifles, important, but secondary. The most important are to accept and understand and love your child for who he is, to surround him with people who feel the same way, to never let his diagnosis be the benchmark for his achievements, and to do your best to empower and engage him as a social person. All told, love is the ultimate answer for all our children, autistic or not.

    I promise that all your struggles for your child, when framed in love, will never, ever, be in vain.

    INTRODUCTION

    At a recent conference on autism, the presenter, in response to a question from an attendee, said, Of course parents can talk to clinicians in the same way she might have said, Of course the sun rises in the east.

    I liked what she said, and I’m here to take it one step further. Parents can talk to clinicians, the scientists who sit in labs and try to figure out why my son needs to flap his arms when he’s excited. As the presenter also pointed out, those scientists need to step out of their labs and see for themselves what’s happening in the real world of autism. Furthermore, pediatricians can talk to educators, and politicians can talk to service providers. Parents can attend a pediatric convention, and therapy facilitators can talk at school budget meetings.

    My husband and I learned to make sure everyone who works with our son is on the same page. We learned to talk to facilitators, school officials, other parents, and anyone connected with our son’s diagnosis. We were encouraged to share information, obtain more information, and always make those phone calls and keep those appointments. That’s why what that presenter said made so much sense to me and why I’m taking it a step further. The combining and sharing of information is so embedded in my approach that I wrote this book to explain our experiences as well as the experiences of other parents for the benefit of everyone. And I mean everyone. This includes scientists and clinicians and educators and service providers as well as my target audience, parents. So we can all coordinate.

    The children with autism today will one day be adults. We want our son to have a job and live on his own and have an independent life as an adult. For that to be a reality for him and others like him, awareness of autism needs to fan out. By reading this book, you can empower yourself to do more. You can communicate with those around you and the people working with your child. You can learn from and ask questions of those who have been there. If cost is an issue, ask for state support to fund a conference. Or volunteer at one. You can tell a conference organizer that you want to attend some of the lectures during your free time while volunteering. Most organizers, you will find, will be very accommodating. They want that information out as badly as I do.

    Your education as well as your child’s education starts very early. With that in mind, I wrote this book from my experiences beginning with early intervention. We consider our son a poster child for early invention, so what better place to start? At the time of this writing, the notion that a child of six months presenting developmental delays could eventually land him or her on the autism spectrum is slowly becoming more accepted. At least, more so then it was when we started in 2004.There are other positive trends to note. Service providers often attend conferences. Therapists always seem to be either taking classes or giving them (all while working their day job). Teachers talk to us parents often and they also talk to other students about why my son needs to sit on a special chair or why he gets to eat gummy bears in the classroom and they don’t. Even untrained aides want to know more about our kids and are willing to learn and take unpaid time to do so. I have handed out documentaries on autism as well as the film Temple Grandin. I’m beginning to use anything I can get my hands on to get the word out. And the word is getting out, but not enough.

    For example, what do parents do once their child is accepted into a program or given services? How do they navigate the world of autism? I’m here to help with stories and suggestions and advice. Over the last seven years, I have discovered a very open and accommodating world without borders. Rich, poor, white, black, Hispanic, all religions, a parent is a parent in the world of autism. And I have discovered that parents talk to one another whenever and wherever our kids receive services. They offer advice and pass on important information easily and openly. They understand what each other is going through and many of them go out of their way to help the path be gentler. I hope this book will help.

    CHAPTER ONE

    When Joshua turned one, my husband and I planned an extravagant first birthday party, treating it as not less than one of the most significant events of our married lives. We had been in our new house for little over a month, and I was very excited about my first entertaining opportunity.

    I worked frantically for three weeks to put the house together and make the perfect party. I was determined for it to be a success. That Saturday morning, my house was spotless and I had even removed the copious notes and lists of projects I always laid out on the corner of my kitchen counter. Funny how that exact spot would change our lives forever.

    By 3 p.m., the party was officially over—and a success. There was too much food and drink options, and plenty (too many) gifts for the birthday boy. Josh was allowed the first piece of cake (a baseball cake for a baseball-loving family), which he immediately smashed all over his face. Everyone went home full of food and merriment.

    By six o’clock that evening, I was still full of food, having managed to eat steadily throughout the day, my house was clean and put back together, and I was tired. Josh had managed a late nap that day and after he awoke, we played together with one of his new toys.

    At bedtime, I took him upstairs, changed him, and then settled him down with his breast of choice. After he was full of milk and finally sleepy, I put him to bed. During the post-party time, my husband had been busy on the computer. I hadn’t taken much notice of it as I was cleaning and playing with Josh, but I was about to find out why.

    I remember our conversation yet I do not recall having any understanding of what Richard told me. He could have

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