Category Archives: Autism

Conversations About Autism

I have been too busy to post lately. I have been finalizing each step of my book design. The book will be available August 1, 2019 on Amazon.com and BarnesandNoble.com.

Here is part of the book description that will appear on Amazon.

Conversations About Autism takes you into the homes of thirteen families as parents reveal with heartfelt honesty the uncertainty, struggles, blessings, and joys that are theirs as the parents of one or more children with autism.

Several adults on the spectrum candidly share how they have navigated through a society that does not always understand their differences or needs. Through the straightforward, spontaneous words of these real people, you will glimpse the everyday life of families who have found acceptance on their journey.  You will also discover that you are not alone.

The personal events these families revealed are divided by topics such as sensory issues, family life, financial struggles, and meltdowns. This format enables you to navigate to subjects that most touch your family’s daily life. Simple, relatable stories based on the author’s years in the classroom introduce most chapters and provide background that is understandable to someone just learning about autism.

The men and women who frankly related their poignant stories have opened their lives to you, the reader. They hope that their combined voices and experiences will enable you to recognize parts of your own story and will offer you hope, guidance, and acceptance.

 

Recent Autism Diagnosis – What Now?

I’ve taught children with autism. I’ve read about and researched the disorder. I’ve been in very personal conversations with parents of children on the spectrum and with individuals who are autistic. There have even been times when I was part of the school team that informed parents that their child met the criteria for autism spectrum disorder.

But I have never had a personal connection with someone who is told that her child should be evaluated for autism. Until recently.

Several months ago, a young woman I know told me that her three-year-old daughter was scheduled to be tested by her school district and by the autism center at a local hospital. I was amazed at how positive she was in talking about the whole process. This single mother knew almost nothing about autism, but realized that she needed answers and solutions for her child.

This individual has been somewhat reserved around me in the past but she sought me out to share her story. She was honest with me about some of her daughter’s challenges, those behaviors that had caused her to seek help.

I was surprised when she expressed to me that she was looking forward to experiencing the ways in which her daughter would use her “amazing and unique gifts” as she grows older. I found that to be an interesting comment from someone at this early stage of the journey.

In the two months that have passed since that first conversation, this woman’s child has received the educational diagnosis “Young Child with a Developmental Delay.”  Medically, she has received a diagnosis of Autism Spectrum Disorder.

Now reality and uncertainty about the autism diagnosis are setting in for this young mother of two.

The hospital suggests ABA. The preschool recommends that her daughter not have ABA because her language is fairly strong. As a retired teacher, I understand that there could be several reasons that the school is discouraging ABA. The mother has no idea that she needs to question this more, to investigate the possibilities when she has opposing recommendations.

In addition, the diagnosis occurred at the end of the school year, so the girl does not qualify for summer services. That means three months of early intervention could be lost! I hate to see that. Kudos to her for continuing to work her way up the supervisory ladder of the school district to try to get some educational help for her daughter now.

Getting signed up for support from the Department of Mental Health is a slow, time consuming task. The paperwork, interviews, and red tape are frustrating. It may take months to get approved. This is not something someone else can do for her. Yet some of the services available for children with autism can’t be accessed without this step.

Insurance coverage needs to be investigated, but there are some complications there.

This mother’s life has changed.  Just.  Like.  That. My acquaintance is still too overwhelmed, the diagnosis too fresh, for her to comprehend that fact. Parenting always involves advocating for children. For the parent of a child with special needs, advocating takes on a whole new dimension. She does not yet understand this.

Another struggle for this mother seems to be understanding or believing that her daughter’s behaviors are a result of the autism and not willful disobedience. She told me that she is trying to come to terms with that, but at other times, things she says indicate to me that she is not yet there. Again, never having been in her shoes, I can’t imagine how long it will take for her to internalize this belief. From conversations with other parents, I think this can be an ongoing struggle for parents of children on the spectrum.

Another acquaintance and I are trying to support this young mom. Unfortunately, there is so much she has to do herself. The likelihood of getting immediate services seems unattainable. Perhaps it is not as critical as I believe it is to begin some kind of program immediately.

I imagine that if someone knew nothing about autism there would be this inclination to think, “Now I can relax. My child has a diagnosis. The school will know what to do.”

Or maybe a mother might think at first that the autism is there. It is not going anywhere. There is no rush.

I don’t know. I have never been in her position. I have not been a single mother. I have not had a child diagnosed with autism. I can only imagine.

Many mothers have talked to me about the importance of continual advocacy. They have talked about getting therapies on their own dime, with insurance, or with the help of the Department of Mental Health.

Then there are the stories of therapies that do or don’t work. Programs attempted. Programs aborted.

There is so much that lies ahead. So much this young friend can’t foresee. Little pieces of information, small recommendations, are almost more than she can handle right now.

What is the mother of a child diagnosed with autism three weeks ago ready to hear? What does she need to hear today? What can wait until tomorrow? Thoughts??

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Wedding, Writing, and Rambling!

“Where has the year gone?” As I ask the familiar question, I know exactly where it has gone.

My daughter, who lives out of state, was married in St. Louis in mid-April. I bet you can guess who was the main wedding planner!

“Oh, but I thought you were finishing up your book?” you might ask. Well, that too.

I finished the book by the beginning of March, and sent it off to the beta readers. My beta readers were varied: a teacher, an English major, a mother of a child with autism, a licensed social worker, and a “just plain” reader with no connection to the world of autism. I gave them six weeks to read the manuscript while I finished wedding planning. Due date: the Monday after the wedding, of course.

I got back to the final details of wedding preparation. Among other things, I needed to finish knitting two shawls: one ninety-inch-long gray shawl for the bride and a slightly shorter pink shawl for myself. This was a barn wedding. In St. Louis. In mid-April. And the ceremony was outside. I wanted to be prepared. The bride showed me a picture of a shawl she wanted and I tried to replicate it. My other daughter, the only bridesmaid, thankfully said she would rather freeze than wear a knit shawl handcrafted by her mother. I say thankfully because I would never have completed a third shawl. She froze, unfortunately, as it turned out to be a brisk, sunny day. It was, however, a beautiful day for a wedding.

Once the wedding was a pleasant memory, I was eager to hear what my readers had to say. Some asked for more definitions in my narratives that begin each chapter to make the book more easily understood by new parents who might know little about autism. They felt it would make it easier to understand some of the candid parent stories in those chapters with more background from me.
Overall, reader feedback about the book was positive. The woman who knew little about autism before reading the book told me she learned so much from the heartfelt words of the individuals who shared their stories. The teacher told me that the stories were down to earth and real but, in the end, she felt the book leaned toward hope. I was hoping for both of those results when I began the project.

It was now my editor’s turn. She agreed that I needed to add some definitions. Since the book is mainly honest and very personal parent quotes, I had really hoped to stay away from clinical and diagnostic definitions, wanting the parent narratives to carry the message. After feedback, I realized I did need to clarify some terms. I worked hard to do that without getting too dry and technical.

I have never written a book or worked with a professional editor before. The parents who spoke to me shared their words in a total stream of consciousness, the way many of us talk when we have a lot to say. That means the sentences ran on, used poor grammar, and were impossible to punctuate at times. The words are emotional and unfiltered and real. My editor knows that it is important to me to keep the voice of each of my contributors. Every time I read their quotes I am transported to our original meetings and feel all of the same emotions I felt then.

My editor has been awesome in working with these quotes and making them as readable as possible. I am not sure all editors would be like that.

This week, my book is back to my editor for Round 2. The process is slow. At this point, it’s all about the journey. Surprisingly, I’m okay with that.

Diagnosis Autism

The road to diagnosis is not always straight forward, even today. Each family that shared stories for my book, brought up the process that resulted in their child being labeled autistic. Their experiences were varied. So were their reactions to the assessment process and the eventual diagnosis.

Some families were shocked when their child was diagnosed, others were relieved when they finally had answers.

Obviously, the story shared by the mother of a child born in 1964 was different from that of the child born in 2006. There was, surprisingly, one thing similar between the stories shared by these two women. Each of them believed their child had autism long before the doctors diagnosed them. Their journeys were both long and frustrating.

The first mother can’t remember the title of the fascinating book she read forty years ago, but it perfectly described her son’s characteristics and struggles. The doctor who wrote the book called the disorder autism, and blamed it on unfeeling mothers, whom he called “refrigerator moms.” Her child’s doctor, on the other hand, named her son’s condition childhood neurosis. She asked him why he was not saying her son was autistic. This doctor responded that he did not want to give the little boy a label that would follow him the rest of his life.

The boy was not diagnosed with autism until he was in his late teens, his mother can’t remember what year. My guess is probably after 1980, when autism became an official medical diagnosis. By this time the child had been in and out of various educational settings, both at home and away, as his mother tried to find a way to keep him safe from his own self-injurious behaviors. Now, as a middle-aged adult, he is able to live with his mother and attend and enjoy an adult day program geared to his needs. Having that “label” allowed him access to this program.

What about the mom whose child was born in 2006? Surely, I thought that her child’s path to diagnosis would be simple, but that was not the case.

Her son struggled academically, behaviorally, and socially from the time he entered preschool and through three years of elementary school. He had severe ADHD, sensory issues, and concerns with expressive language. He eventually began to show delays in receptive language.

So many things pointed to autism, yet he never quite qualified for that diagnosis. Several specialists told her he would grow out of it. He was finally diagnosed with autism when he was eight, after his parents found the right medical professionals to assess their son. By this time, they were thankful to hear the words, “Your son has autism.”

Now this child is getting the educational support he needs. His parents moved to a school district that they felt would best provide the services that would benefit their son., services that would not be available without the diagnosis.

Several parents explained that the post 2000 autism diagnosis for other children came quite easily. Other parents shared a different story of their experiences, even in this century.  I wondered how this could be.

Why can autism diagnosis be so complicated?

After my conversations with various families for my book, I developed a greater appreciation for the differences in children on the spectrum that led to a more challenging diagnosis process. The signs that educators or doctors might consider indicators of autism might be displayed earlier or later in a child’s life. Some of these characteristics may never appear in a particular child on the spectrum. Sometimes strengths in one area may mask deficits in another area.

I also developed a much greater understanding of the many other conditions that are often prevalent in children with autism that can complicate the process. Children with autism might also have severe  ADHD or Obsessive Compulsive Disorder. Doctors sometimes diagnosis these conditions without seeing the autism.

Straightforward or challenging? How did the diagnosis go for your loved one with autism?

Pamphlet or Encyclopia?

It seems that I am not a very decisive person lately. Even as my beta readers are reading my manuscript, I am considering what I should have done differently. Did I include the right chapters in this book? How could a retired teacher not include the chapter on education in my first book on autism? Should I go back to the drawing board? Of course, I could revise forever and never finish the book. That’s how I operate.

Maybe I need to back up a little to clarify why I am having this problem. It really began with a conversation last summer with someone who verbally cracked the whip and basically told me to stop talking and get the book out there where it can do some good. This woman, who was diagnosed with a seizure disorder as an adult, explained that when she was first trying to understand what was happening within her brain, she really wanted to read pamphlets, not an encyclopedia. She convinced me that I was going for the encyclopedia. At that point, I had already had conversations about autism with people from thirteen families who were sharing for my book. I had actually hoped to include twenty-five families! I loved listening to the people tell their stories. I enjoyed hearing their experiences repeatedly as I transcribed their conversations into print. It was interesting to see how their stories sometimes overlapped, and topics for chapters bubbled to the surface. I really didn’t want to stop all of this and get into the real work of writing and publishing.

Thankfully, I followed this woman’s advice and prepared to bring the book to a close. I had already arranged many of the quotes into chapters about various topics relating to autism.  Each chapter had several subsections.  Two friends had each read a few incomplete chapters over the months to see if the book was readable and useful. One of the women, whose son is on the spectrum, told me that she felt the book would be useful not just to parents but to educators, coaches, and doctors.  With this thought in my mind, I plugged the remaining quotes into the appropriate chapters and began adding the rest of the stories. I was still sketching out chapter introductions, which are my own narrative regarding the topics such as sensory differences, parent advice, awareness, etc.

At this point in the process, I had the opportunity to attend a publishing event, carrying a crumpled chapter in my hand, to get professional advice. It had never occurred to me that my typed pages were not as small as the pages of a book. I personally felt, going into this event, like the book might be a little skimpy. There were so many topics to cover. I was utterly surprised when, after telling professionals how many words were in my document, I found out that my book would be well over four hundred pages long! What person in their right mind would read a non-fiction book that long? More importantly, what parent whose child had just been diagnosed with autism would even consider reading a book that long? Who knew? I had written an encyclopedia.

I began the hard work of choosing my chapter topics. Which chapters should I include in this book, and which will go into a later book? I began rearranging some quotes that could have gone into multiple chapters and rewriting introductions. I finally came up with a finished manuscript that seemed right. I proofread it repeatedly, and recruited the help of my beta readers. What a relief! My rough draft was complete!

Now, I can take care of some real-life things that have been stacking up and be ready to revise and proofread when I get feedback in April. I made the right choices for the first book. Or did I? I continue to second guess myself. Maybe I should put everything back in and just publish the encyclopedia.

Retired or Author?

Am I retired? When I began this blog in 2014, I adopted the theme of “Retirement – My New Reality” and somewhere along the way, retirement does not seem like my reality.  I am……. Hmm. Who am I? When I think about who I am, the word retired doesn’t  pop into my brain as readily as it once did. I am busy, but have plenty of time to relax, frequently. I am a grandmother, enjoying a three-month-old without the pressure of parenting. I am a somewhat lazy gardener who still manages to grow enough kale to make smoothies all summer and enough lettuce to make a big salad almost every night for most of the summer. We won’t talk about the tomatoes that were ravaged by the deer last year. I volunteer as conversation tutor for adults learning to speak English. I am a college instructor, teaching one class only in the fall, my own time schedule. And oddly, I teach MATH, yet I am a writer!

Yes, I am a writer who now thinks of herself as an author. I have finished my manuscript of a book that shares the experiences of families that have children with autism. Publishing is right around the corner, or maybe a mile away. I am not sure how long the time will seem.

For two years I have had conversations about autism with mothers and fathers of children on the spectrum. I have also spoken with four individuals who have autism.  All of these amazing people have shared stories of their experiences for me to pass on to others who are on the same journey. I was energized when I first heard them talk about their lives, as they explained details of their days, months, and years. I was re-energized every time I listened again to their words, transcribing these events for the chapters of the book. Then, with their words still resounding poignantly in my ears, I was forced to rediscover my own writer’s voice as I wrote introductions for each chapter. Now, my manuscript is finished! I am in the process of preparing for publication.

Currently my manuscript is out of my hands, figuratively and mentally. I told my six beta readers that they have until mid-April to read and report back to me their initial thoughts and reactions to my book. Meanwhile I am pretending that they have the only copies of my book and that the whole file in not on the desktop of my computer and backed up in about three places. The suspense is killing me, but I needed to distance myself from my writing for a while so that, when I pick it up again, I will see mistakes I might have missed or thoughts that need clarification.

In April, I will make any revisions that I feel necessary after getting input from my beta readers. Then I will proofread my book a few more times before passing it on to the editor. I am sure that I will have more revisions to make after professional editing. Writing a book is not for the fainthearted or the thin skinned. Then on to graphic and layout designers, etc.

Am I retired? I don’t think so. I now see myself as an author. I know I have enough compelling material to publish a second book. I have other ideas floating around in my brain as to how I can use my newly activated Facebook author page and an eventual author website to spread information about resources available in my local (St. Louis, Missouri) autism community and maybe to provide connections for people who are looking for support. I think what started out as a “project that I hope will turn into a book” has turned into a new mission. I am not sure how or where I will end up with this extended project.

Reach out if you have any thoughts about what I could do next. What would be important to you if you have a child on the spectrum?

If you are interested in writing or autism please follow my new Facebook Author page – “Debbie Frick Author”.

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.

Settling into a Mission

My last blog post was over 2 years ago!  Amazingly, I still have a few hits on this blog almost every day, so I thought I would take it in a slightly new direction.  Or, maybe it’s not really a new direction as much as a “settling in” for me. I spent the first few years of retirement trying things, “exploring my new reality.” Don’t get me wrong, I am still constantly discovering new things to do, but I have settled in somewhat to 2 undertakings.  These are the tasks that I feel are beginning to define me in my new reality.  It is interesting that I never thought of it this way, defining me, until just now, but these are the things I talk about to my friends and family. These are the activities over which I stew and rejoice, the activities about which I complain and brag, activities which make me feel productive and alive.

This is the beginning of my fourth fall teaching at a local university.  I teach only in the fall. As I tell everyone, “I did not retire from teaching full time to teach full time.” I teach what are known as methods math classes to students studying to be elementary school teachers.  Teaching college students how to teach math, a subject that many despise(d), has its own set of rewards and challenges.  Some years one outweighs the other.

The role that most lights up my life nowadays, is my new role as author.  In my last post, I was beginning to focus more on writing, and I left you, my virtual audience, hanging in the air as to what direction my writing might take. I was as yet uncertain about what that direction would be. I mentioned in that post that I had begun jotting down anecdotes about my experiences as an elementary classroom teacher.  Just as writing blogs for a virtual audience did not spark my creative juices or light any fires in me, neither did my stories about my own personal experiences. I did not have enough interesting material to fuel my writing.  I realized that many of my short pieces were actually about my interactions with children on the autism spectrum and what I learned from having those special children in my classroom. The stories were, however, about me, not about the children. Boring. Suddenly, it hit me!  I would share, not my own stories, but the stories of families who have children with autism.

For the last year and a half, I have listened to more than a dozen mothers pour out stories about their lives as they share examples of how having a child with autism has impacted all aspects of their daily living. This is what I am chronicling, not my story, but theirs. For me, it is a remarkable journey, a journey that finds me humbled by how open these women were in their conversations with me. For some of them, the experience was therapeutic, as we cried and laughed together over events they revealed. Most of these women seemed motivated by the desire to help other families feel less alone in their own journey.  A few of these women knew me slightly, some I had never met, yet all were willing to share their hearts and their lives.  I have met some of the most remarkable families during this time and have found a new mission and passion in my retirement.