Paperback: £12.99 / $19.95
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2006, 234mm x 156mm / 9.25in x 6in, 208pp
ISBN: 978-1-84310-829-0, BIC 2: JM
JMC
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Introduction
Out of the corner of my eye I noticed my husband's college newspaper lying open on the table. I skimmed the classified section with interest:
My name is Sarah. I am 4 years old and have autism.
Therapist needed for ABA program, flexible hours.
No experience necessary (will train). $9/hour.
Little did I suspect that the decision to answer the advertisement would change my life as I knew it. To me, at first, it was just a part-time job to pay the bills and keep my foot in the door of my profession. I thought I could drive to work, spend a couple of hours doing drills that someone else created and go home to be with my new baby—no responsibilities beyond the front door, no strings attached. There was no contract and I could leave whenever I wanted.
By the end of my first week at work I was hooked. Helping Sarah taught me a whole new way of looking at the world. When I arrived I didn't know the first thing about autism. My knowledge was limited to a horrible black-and-white film from the 1960s that I had watched in an Abnormal Psychology class as an undergraduate; it included footage of a boy repeatedly banging his head on a wall. Thanks to Jamie, Sarah's mother, my limited vocabulary soon included terms like Lovaas, thimerosal and casein. Catherine Maurice became my hero, as I'm sure she did for many of you, too. I also learned the correct use of prompting, reinforcers, and restraints.
More importantly, though, I didn't just feel like an employee—I felt like a member of the family. Through our conversations at the beginning and end of each session Jamie grew to be like a mother, sister, best friend, educator and mentor rolled in to one. In return I listened to her concerns about the therapy program, the school system, and her hopes and fears for Sarah. With my limited experience dealing with autism I wished I could do more, but I didn't know how.
I spent the next two years doing everything I could to keep the program going and ensure that Sarah received consistent therapy at home. Thinking up new drills, training therapists and ultimately hiring other therapists were all part of my expanding duties. I watched as Jamie slowly removed herself from the program, increasingly overwhelmed by the stress, until one day the strain became too much and she left. No one told the therapists exactly what had happened but one thing was obvious: she was out of the picture, at least temporarily. After that the program fell apart and I also left.
After a six-month stint away from autism, and the birth of my second child, I felt compelled to return to work. I found a new family and started the process of investing myself in their program—professionally and emotionally—and I integrated myself into the rhythm of the family and therapy team. Again, I was struck by how much the mother relied on me to talk through concerns and simply to listen. While my knowledge had definitely increased, I still felt inadequately prepared to answer her questions in the breadth and depth she needed. Ultimately the family left the state to be closer to a specialized school; again, I felt that although I had performed my duties as a therapist, I hadn't done enough to help the mother.
Then an idea came into my mind. What if there was a book, written for parents, by parents who wanted to share their experiences with autism in order to help other parents who were experiencing similar trials? I set a goal to interview two parents in every state, but quickly determined I had bitten off more than I could chew. My personal contacts in the autism community were limited and centralized in one state. I needed help and I didn't know where to turn. So I did what most parents in this book suggest and tried my luck on the Internet. Immediately I connected with people across the country that were willing to help. Two treasured resources I discovered were the Parent 2 Parent Network at Unlocking Autism (www.unlockingautism.org) and the co-editor of this book, Kelly Jolly. I found Kelly through a discussion board at www.parenthoodplace.com, which she hosts and, based on the merit of her story (see “Kelly and Shaelyn” in Chapter 1) asked her to assist in collecting the stories for this book. She shared my vision to support the families of children diagnosed with autism.
This book is the end result of our passion and desire to help mothers and other family members to cope with autism in their lives. The original concept was to provide a forum for parents to help other parents, and to provide hope and healing; however, in the process of discovering the stories, it became so much more. Each story provides a unique look into “life with autism” but, more than that, the stories provide a basis for understanding common experiences, discussions, and personal reflection. This book is for you, as a testament to my love for those family members who sacrifice so much to make a difference in the life of a child.
Donna Satterlee Ross
Understanding 6-7-Year-Olds
Corinne Aves
