Monthly Archives: September 2018

My Autism Project Begins

Throughout my years teaching in a public elementary school, I had various students with autism in my classroom. During the early years, it was difficult for me to find helpful information on how to best reach these children or to provide me with any insight into what autism even is. I could find dry lists of “characteristics” and equally dry lists and articles of techniques. Books, also, seemed to lack what I might call a human element. Once I discovered “Thinking in Pictures” by Temple Grandin, I realized that memoirs about individuals with autism could be much more revealing and interesting. I was hooked.

About fourteen years ago (who knows, life flies), I was taking some graduate level school counseling classes. Each of my required research papers provided me with another opportunity to learn more about autism, as I blended research from professional journals with insights from memoirs to try to present a realistic yet practical approach. By this point, I even found professional articles interesting. I was hooked.

So fast forward to 2014, my retirement. My “Things I Want to Do When I Retire” list included possibly writing a book, probably a children’s book or a book full of teaching anecdotes. I had been working on ideas for several years, and had a writer’s notebook with several first chapters of children’s fiction, a list of other possible topics, and thoughts of children’s nonfiction books.

After retirement, I began to write down some of the funny and interesting little stories of life with elementary children. Once I had several stories written down I realized two things. Many of my most memorable stories were about children with autism and what I learned from them. More importantly, I realized that I really didn’t want to write a book about me or my experiences, but I wanted to write a book about the children themselves.

What would I do and how would I begin? I called a friend whose life path had crossed mine at opportune times in the past (long story also connected to autism). She is very tuned into the local autism community both because she has a son on the spectrum and because her work for many years has been connected to autism. She thought a book was a wonderful idea. She explained that the board at the organization for which she works had considered trying to gather and share stories, but didn’t quite know where to begin. Well neither did I! But my “Project that I Hope Will Become a Book about Autism” began.

Thus began yet another “new reality” in retirement and I jumped in with both feet. That’s a scary thought, because of the water analogy and the fact that I don’t swim and am petrified of water higher than my knees!

Why Autism?

When I tell people that I am writing a book about families who have children with autism, I am invariably asked, “Why autism?” The answer is long and complicated. It’s hard to explain, because my interest in autism goes back to 1994. It reads like the introductory scenes of a movie, the part before the opening credits and title.

 

The room was crowded. Some people stood clustered in groups talking to new or old friends. Others hunkered down in kindergarten chairs not meant to accommodate their height or width. The air was charged with anticipation, excitement, uncertainty and nervousness, this latter mostly emanating from me. About the time I invited everyone to have a seat, in strode a woman and a child of about five. The child’s hair had not been combed and he wore no shoes. Neither he or the woman seemed concerned by the fact that he was the only child in the room, nor by his dirty bare feet. Some of the other visitors seemed a little hesitant. Some seemed curious. Myself, I was a little unsure but welcomed all my guests, introduced myself, and began the Open House for the parents of kindergarteners who would be entering my classroom the following week. I was reentering the teaching profession after having pursued other paths for twenty years, and who was this boy without shoes at a parents’ only event?

 

I can’t recall a word I said that night of my kindergarten open house. I do remember that I was constantly wondering about this woman and her child. Smiling parents said their goodbyes before leaving. Soon I was left with the woman and her barefoot son. While I may not remember what I said, she was evidently encouraged by my words. She informed me that her son had autism and she had heard that our school was very welcoming to children with special needs. She was at the open house to check us out and after listening to my presentation she was going to ask that her son be enrolled in my kindergarten class.

She left and I thought, “Autism?” I remembered a neighbor telling me she believed a neighbor’s preschooler had autism because he walked on his toes. That’s all I “knew” about autism, even having earned both a general education and special education certification almost 25 years earlier. (Maybe I should say because I had earned my special education certification in the dinosaur age!)  This boy was not walking on his barefoot toes like my neighbor’s child. The term had never come up in all of the special education classes I took in the early seventies. It had not been mentioned at the school at which I taught nor did we discuss it in the graduate education and Gifted education classes in which I was currently enrolled. I hadn’t even watched Rainman. I wondered, “What on earth is autism?”  I knew that I better figure it out quickly.

That is why I began to read everything I could about autism, and didn’t stop reading for the next twenty years.

Beginning my Autism Project

One of my top strengths, according to an assessment I took many years ago, is something the program called “Woo.”  Most people I know who have this strength are extroverted individuals who love to socialize and party. Well that description does not fit me! I am an introvert who prefers one on one conversations rather than large crowds.

I remember that for many years I jokingly told my husband that I must wear two signs that many people can’t see. The first sign said, “I am a Kindergarten teacher, so if you are under 6 and see me in the store come and talk to me. I am not a stranger.”  I would just smile at a kiddo and he or she would start talking to me, leaving parents worried, I’m sure, that I was a kidnapper in disguise! My second sign said, “Tell me all your problems, especially those that others would consider TMI.”  There was a time I knew more about mere acquaintances than seemed appropriate. Really, why are you telling me this?! Yet, I always tried to provide an understanding ear.

I realize, now, that I actually wore and still wear a third sign. It reads, “It doesn’t matter if you never saw me before, strike up a conversation with me and we will find something in common.” I can encounter someone in the grocery line or shopping over a pair of pants and walk away knowing her life story, through asking curiously strategic or strategically curious questions, and then just listening. Once I even had lunch with a lady who was buying the same jacket as I was! This is what Woo looks like in me.

I guess it is this same talent, if you want to call it that, which enabled me to call mothers of children with autism and ask them to share their stories for what I identified as “a project I hope will turn into a book.” With each of ladies, some of whom were mere acquaintances and others total strangers, I put a recorder on the table between us as I asked her to tell her story. Each of these women talked for well over an hour, with few prompts from me, sharing events and realities from her daily life as a parent of a child or children on the spectrum. Only then, did I begin to ask a few interview-like questions.

When I first began the writing portion of my autism project, I shared the stories as they were told to me, adding my own narrative to fill in background and describe the emotions that these women showed as they opened their lives to me. I loved so many aspects of the way these accounts unfolded and could imagine how these stories would benefit other families who were just beginning their journey.

I changed the names of the children and the schools in an attempt at providing privacy, however, my stomach literally churned when I realized that this was not enough to protect the anonymity of the families. I know that in my city, the community of families of children with autism is interconnected in many ways. Some of the families who shared their stories knew each other. Although all the parents told me that I could share everything they said, I quickly realized that some details of their stories made them readily identifiable. Someone might easily recognize a family through some of the innocuous details of their road to diagnosis, the family make-up, or a particular path through the educational system. That seemed pretty harmless. Once I got to details in the story that shared more personal information about how parenting a child with autism challenges a marriage, or how family finances are affected by having a child with autism, or about a time the family had to call the police to help them manage their older child in melt-down mode, I knew that I was not comfortable with the way in which I was reporting these personal details.

I eventually decided to divide the stories by topics, such as funding, marriage, education, and meltdowns. The first rewrite began. The rewrites continue.