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First Blog

This is the first Blog I have attempted to write, so please bear with me as I stumble and bumble my way.

My Blogs probably, in the grand scheme of things, will be shorter than most. There are at least two reasons for this. 

The first reason is that I don’t want to wear you out or bore you.

The second is that the topics I know enough to write about have already been used. Most of what I’ll have to say is a distillation of all I’ve encountered about each topic, gleaned over the years from so many sources it would be frivolous to mention them all. When I stimulate your interest in some way, and/or you have more information about the topic to share with me and others, please feel free to Contact Me.

Here’s a short list of topics that may find their way to this blog. If you’d like to add (or delete) a topic, please let me know. I expect the list to grow.

  • Autism and other conditions that can affect or change a person’s life—everything from “How to Be One,” to “How to Help One.”
  • Why each of the books on two shelves in my bookcase is there. These books have informed my life. They taught me something by virtue of their content, or they stimulated my interest in the art of writing well, or both.
  • Other book reviews—an eclectic variety of topics and styles.
  •  “How to ….” pieces about a wide variety of things, from how to cope with a parent with dementia to how to procrastinate when you’re faced with a major project.
  • My favorite recipes. 

I’m sure I’ll think of more topics. I look forward to both your comments on anything you encounter on this website and suggestions for other topics. Some of these latter may be out of my ken, but I’d like to hear about them.

Thank you for reading this far. Stay tuned. I hope to change this blog weekly.

Cybele

Welcome to Cybele’s InSite

The primary focus of this website is a discussion about ways we can help our special people who live with autism. 

* Turn to the Blog for general information and ideas. 
* Take a look at About to learn about me, my background and my achievements.
* Read How I Can Help You to see ways I can help you personally
* See Readers Help Readers for ways you and other readers can help each other with ways to deal with life with autism in general and in specific situations we encounter in that life.
* Use Contact Us to send comments to Andy and me about this website and about our book, Andy Speaks, and for things I wrote when I should have been doing something “important.”
* Refer to Other Words for lists of publications and other books to read.

What Worked–Part 2

This BLOG is the second of a three-part series about some of the efforts and techniques that helped my son, Andy, and me as we lived with his successful struggle with autism. We hope reading about them will encourage others to try them (if they have not already done so). Even more, we hope others will turn to the Suggestions page on this website and share their successes with others.

When Andy and I finished the first complete draft of our book about life with his autism (Andy Speaks; Mother and Son Talk About Life with His Autism), available on amazon.com, I sent a small sample of it to Temple Grandin, the well-known advocate for people with autism. I asked for her comments. She called to tell me about several things that might improve the book. She repeated one suggestion again and again. I must include loud and clear information about “what worked.” Without that, she said, all the rest of the story would be useless. I agreed, and wrote another chapter in which I included specific information about actions and techniques that clearly helped Andy. As I wrote that chapter, I realized the information in it belongs on this website. I divided it into three BLOGs; this is Part 2.

Of course, what I present here cannot be a complete guide to all attitudes, behaviors, and techniques that work for all people with autism. There can be no such guide, because—like all the rest of us—all people with autism are unique individuals. No two are exactly alike, and no two can be treated in exactly the same way in every situation. These are things that worked for Andy and me. As we walked our walk, I saw they often worked for others. I hope many, if not most, work for you.

Many people with autism have IDIOSYNCRASIES that seem totally irrational to the rest of us. One example is a boy I met who carried a length of string (about eighteen or twenty inches long) with him at all times. He kept it in his shirt pocket and, when stressed, he took it out of the pocket, held it in his right hand, and ran it through the fingers of his left hand. (His mother said she’d learned to ensure he always wore a shirt with a pocket.) Other persons must count to ten before they can perform certain activities. Or they have to spin around a certain number of times before they enter a room. Such idiosyncrasies should be tolerated and respected; mayhem can and often does occur if they are not.

Only slightly different from idiosyncrasies are MONOMANIAS—topics of great interest to the person with autism (and, quite possibly, of no interest at all to anyone else). The autistic person generally knows virtually everything known about as many aspects of the topic as interest them (not necessarily everything known). Some are creative about their interest, and express it in reports and other documents, models, and even movies. However, in many situations (especially at “social” events) the person with autism will talk about only the topic of his or her interest; they may openly refuse to talk about or listen to any conversation about anything else.

Some people with autism don’t possess the potential or ability to live an independent life when they reach maturity. A number of these persons live in group homes. Many go to jobs every day in workshops where they manufacture small items for direct sale or for incorporation in larger equipment. Most of these people are happy in their lives.

One GOAL of a significant number of persons with autism is to live a “normal” life, like “everybody else.” Some do become fully independent, with regular jobs, apartments, cars, and financial success. A few go to college and acquire degrees. I’m not aware of the statistics, but I’ve observed most of these people encounter many situations in which they’re told they will never be able to lead a normal life and they will not experience any of those regular benefits of independence and ability. I’m pretty sure a number of them are told they will not go to, let alone graduate from, college. I am equally sure each of them has benefitted from the ENCOURAGEMENT of at least one person, often several people, who believed in them and helped them in many ways as they followed their dream to success.

Whatever their goal, and no matter how improbable it seems, the person with autism deserves encouragement and assistance as much as does any other person. They never should be told, “You’ll never graduate from college,” “You’ll never get a job as an artist.” We say to their “normal” siblings and cousins, “My! That’s going to be a long, hard road; I know you can do it!” or “A job as an artist is hard to find; I wish you luck!” The teen-ager with autism needs the same EMPATHY, ENCOURAGEMENT, and ASSISTANCE. They need it most from those who matter most: their parents, teachers, tutors—those who’ve already helped them so much.

When you work with a person with autism, you can and should MAKE USE of any monomanias and/or goals of theirs. These provide excellent topics upon which you can build as subject matter for many educational activities, both academic and social. If models of cars is a PASSION: How many models of Chevrolets can you name? Fords? Toyotas? Add them all. How many is that? Subtract the models of Fords. How many are left? ….  Look at the cars in the parking lot. Name the colors of the cars. ….  Write the names of the colors. ….  For an older student: Here is a map of our county. Write the names of the cities you might live in when you move away from your parents’ home. …. You get the idea!

I repeat: You are the most important person in your child with autism’s life. Be sensitive, be sensible, be sensational!

Andy Speaks

In the two years since I began work on this website I’ve often faltered and floundered about its purpose and content. Much of the time, it sat idly by as I worked on other projects.

Now, I am excited to tell you one of those projects is more than alive and well. My son Andy and I completed our book about life with his autism. Andy Speaks is up and running on amazon.com

(Don’t be confused by my author name. Carolyn Coen was my name from the beginning to the end of my part in the book.)

Here’s how the book is described on the back cover and on amazon:

Andy Speaks is a sincere testimonial that reveals dramatic changes in the life of Andy, a man who has autism. He tells his own story of adversities overcome and challenges met. Interwoven with his stories are reports by his mom, Carolyn. She augments his revelations with stories of her involvement in his life. Andy’s caregiver, teacher, advocate and audience, Carolyn gave Andy consistent and deep faith in her own perception and understanding of his goals and abilities. Her dedicated efforts to ensure his success-together with his own determination-paid off.

Early chapters alternate between Andy’s story and Carolyn’s reports of how she helped him realize his potential. In later chapters, Andy tells of his independent life and many accomplishments. Finally, Carolyn describes the attitudes and efforts that worked to help him achieve his successes. Her final words reveal his ongoing growth toward a normal life and the ways his growth reflects her success.

In all, this book reads like a story, but every word is true. You won’t stop reading until you get to the end.

From Andy Speaks, available now from Amazon and Warner House Press

We hope you’ll be inspired to obtain and read a copy of Andy Speaks. The ups and downs you’ll find in the story lead to a reward beyond compare.

—Cybele

She Did Good

There is much to be said about my mother that is negative.

There is much to be said about my mother that is negative. My brothers and I have talked about a lot of it. And a lot of it has been left unsaid. I, at least, keep my secrets, stories too horrible to share around a reunion picnic table when the nieces and nephews and grandkids are bringing snakes over for approval and babies are crying and being passed from one adult to another like sacks of sugar.

But what I wanted to say was that, despite all of the negatives, there was good in that woman. She had a rich and productive professional life, in her later years, and held a very fine reputation among her coworkers. She was a school counselor, and—apparently—a very good one. She helped many junior high school children who were troubled in various ways. At her funeral, a lot of people came to my brothers and me and told us what a fine person she was. We had difficulty accepting that view of her, knowing her as we had. But, since then, I have thought about her, and about many things she did and things I know about her, and I have come to understand much.

For Easter, when I was almost two years old, I received a stuffed dog. I named him Mac, after the dog next door. I still have Mac. He was my guardian, my confidant, my protector, my soul mate all the way through college. Actually, the Mac I have now is not the original Mac. I threw up on the first one, and my mother was unable to wash out the smell. The second one fell victim to Brother Jim’s reaction to typhoid inoculation: we were supposed to lie still in the lawn chairs, but he took Mac across the yard to the bird bath and rolled him in the slimy green water, then took him to the sandbox and rolled him in the sand. Our mother’s response to my screaming was not fast enough to prevent irreparable damage. The third Mac was the last Mac to be found in the metropolitan Detroit area. Stern injunctions were imparted to Jim and me to never let anything bad happen to him.

Jim had Bear, who was to him as Mac was to me. Mac and Bear, about every three years, would lose all their fur, or what passed for fur, and become pretty threadbare. Our mother never once suggested that we give them up, or put them away. With absolute sympathy, she simply said, “Mac needs a new coat! I will make him a slipcover. You sit here and watch.” And so we did. 

The first time she cut Mac’s skin open with scissors I was almost sick. I thought I would throw up. But she was very considerate. She cut on the seams, and she took off only one piece at a time, explaining to me that she would do that so he wouldn’t come apart. She put the piece down on paper, and drew a pattern, which—as she explained—she would always have for the future. Then she put that piece back on Mac, and cut loose the next piece, and made the pattern for it, and so on until she had pattern pieces for the whole Mac, even his ears and tail. 

While my mother made a slipcover for Mac, she told stories about her own childhood and growing up. We lived in a suburb of Detroit, Michigan, but she had grown up in Washington, DC. She had lived in apartment houses, and—from the stories she told—that always sounded exciting and glamorous to me. One of the apartment houses was razed, because the U.S. Supreme Courthouse was built on that site. She talked about going to the Montessori school where her mother, my grandmother, taught, and having learned so much there that, when she started regular school when she was five, they had to put her in second grade.  ….  She almost failed the intelligence test, however, because—among other things—when she was asked what she would do if she found she was late on her way to school, she answered that she would turn around and go home. The “correct” answer was “Run!” But she knew that, if you were late, you had to have a note from your mother!

She talked about roller skating on the steps and in the halls of the Capital Building, and riding the Senate subway. She talked about summer camp, and the rest of the summer at a beach house on the Chesapeake Bay. She told many stories about her life after she and my grandmother moved to Detroit when she was fifteen. She especially liked to talk about her volunteer work in a community center working with a group of junior high age girls putting on plays. And she told the story of going to the summer camp for disadvantaged boys, where she was to be the store-keeper, and how – upon climbing out of the car and seeing an athletic young man, a counselor, across the way – she said, “I wouldn’t marry that man if he were the last man on earth!” Two      years later, that young man became my father.

And there was the milk. When I was fifteen, my mother became pregnant with her fifth, and last, child. Concurrently, I was in my last growth spurt—my long bones were stretching almost visibly, and they hurt. At night, the pain was virtually unbearable; I was near tears, and could not sleep. The doctor prescribed a quart of whole milk for my mother, for the baby’s development; it was mandatory, he said. The rest of us drank the God Awful reconstituted powdered skim milk that we had been drinking for the past three or four years. It was my job to mix the daily gallon of the stuff, and I had to hold my head away to do it, because the smell of it made me gag. I couldn’t drink it. The residual twelve cents from my lunch money each week did not go for candy, as did that of my brothers. It went straight back to the cafeteria for extra milk—and it still was not enough. I craved more.

My mother, with misgivings, started giving me a glass of her whole milk every night. We didn’t talk about it; I just drank it, pretty fast, immensely grateful for both the nutrition and the nurturing gesture. One night, my father saw her give me the glass of milk. He became enraged, and—while putting on his pajamas—shouted that the milk was for the baby, he could not afford milk for me, there was to be no milk for me!

I stood, glass in hand, stunned and hurt. My mother stood stock still, then raised her glass of milk over her head and hurled it the length of the room. The glass bounced off the keyboard of the piano and fell to the floor. For just a moment, a curtain of milk hung suspended in midair, arced at the top, single beads in strings at the curved bottom, above and between my father and my mother and me. It was uncommonly beautiful! Then it collapsed and fell, a gift no more. 

For a few more weeks, I continued to get a glass of whole milk every night. My fourth brother was born, quite healthy. He is now sixty-six years old and shows no signs of early malnutrition. 

Neither my parents nor I ever spoke a word about the curtain of milk. 

I finally understand that my mother, who did so many things that were hurtful, also was able to feel compassion and to respond to real needs. I believe she did the best that she could do, given the life she had. Most of all, I feel sorry—for her—that she did not have a better life.

The Meanings of Change

Part of my belief about change was expressed by my friend, Pat. As I visited with her one day, she told me about her recent visit with another friend, whom she had not seen for many years.

Part of my belief about change was expressed by my friend, Pat. As I visited with her one day, she told me about her recent visit with another friend, whom she had not seen for many years. 

Her friend said to her, “My, Pat! How you’ve changed!” 

Pat replied, “No! I have not changed. I have merely become that which I’ve always been becoming.” 

This is one of the best explanations of change that I have ever heard or read.

Think about all the changes that have occurred “since we were young.” Many things have changed. When I was still small, we lived in what would now be called “Yuppie” suburban Detroit. Waking up lazily on a late summer Sunday morning brought through the open window myriad neighborhood sounds. First, the clatter of Mr. Phelger’s hand-pushed lawn mower brought with it the smell of the fresh-mown grass. Later in the morning, we heard Kenny Miller’s gas-powered model airplane. Even later, I heard the slap of the Martins’ kitchen screen door as Dr. Martin went out to check his rose bushes for aphids. 

In the summer of 2005, I drove down our old street. The front yards were run down and the lawns were no longer neatly mown. The houses were unkempt. Surely no Yuppie would be caught with an SUV in any driveway on that street. We had left there a month before I turned eleven, on June 19, 1950, the day the Korean War started. I’m pretty sure, from letters my parents received from our former neighbors, that we—not at all on purpose—were the first to leave in what became a veritable exodus. 

When we arrived in Tennessee, seven of us lived for a year-and-a-half in a two-room log cabin with an add-on kitchen and nominal—but not-functional—bathroom that for the first summer had no electricity, running water, plumbing, or other amenities. The family doctor still made house calls when I left for college. We’d had a telephone in Michigan, but we did not get one in Tennessee until I turned seventeen. I had a panic attack the first time I had to call home during my first semester in college—long distance, on a dial phone in a booth. 

I never lived in a home with a TV until I married in 1964. Only five years later, in July, 1969, that TV died an untimely death while my first husband, Richard, and our children and I waited for the live video to return the pictures of the last moments of the Lunar Excursion Module’s descent to the moon. We rushed three blocks to Montgomery Ward and bought a tiny new TV. We got back just in time to see the lunar landing and hear Neil Armstrong announce: “One small step for a man; one giant leap for mankind.” 

Look in our homes, in our driveways, in the stores, on our map, out in space. Can you point to any place at all where nothing has changed? Can you name a single change, any one of them, that happened all by itself without a (human) cause? Can you point to any single place where you have not had an effect, in some way? 

All these new technical gadgets! Games! Cell phones! Computers! Blogs! Twitter! Texting! WiFi! Who needs them? Do you have a GPS navigation system in your car? Have you thought about getting one? Why? Who among us does not have a cell phone? Or a computer? Did you have one when you were 25? Well, why do you have one now?  

If this is not your first cell phone or TV, how did you decide which one to buy this time? Did you just walk into the store and buy the first one you came to? Not on your life! You had some ideas about which features you wanted, and you looked at a bunch of models and compared them, and decided which had the best combination of features for the money, and bought that one. You drove change, because the manufacturer took note of the features you bought. When a new TV is designed, the most frequently chosen features this month will be built into the next technology for a new TV, cell phone, GPS, computer game, car, microwave, and food on the Space Shuttle. You’ve bought re-constituted freeze-dried food, even if you haven’t thought about it, and “they” have counted up how many “orange-flavored” boxes were bought, and how many “lemon-flavored” boxes were bought; you can bet your sweet bippy!

If you read the paper and watch the news on TV and engage in loud discussions about the “state the world is coming to,” do you go beyond that to act in such a way as to change the course of events? Or are you like me? I have not watched TV for more than thirteen years, I refuse to read a newspaper, and I have no desire to talk about any of it. Other than the unavoidable impact of the covert and hidden things over which I have no control, there seems to be no way I can have any real impact on (the results of) events that are controlled by powers and powerful people far beyond my reach. I do feel guilty about the impact I implicitly have but do not exercise. Most definitely, I am aware that my failure to act has an impact, a result, makes a difference, changes the outcome. 

Go back to the beginning of what I said. Even though the measure of my impact, of that change on the outcome, is minute, remember that it is permanent. So, even though I am human and forgetful, I try always to be Mindful. I try as much as I can to make my every action thoughtful because, even though I have no idea what—in some far off time or place—the effect may be, there will be an effect. I want it to be a good effect. I intend a good change, insofar as good means beneficial to the whole, to the unity and all there is in it. If that happens, every individual, also, will benefit. 

With all of the above in mind, and the knowledge that so many drastic changes have happened and are happening, I believe that the process of change, itself, is neither good nor bad. It is simply a major facet of existence. It is part of “becoming what always has been becoming.” Societies, cultures, nations, peoples, governments, policies, mores, machines, tools, toys will change. Some of the changes will seem pleasant to some people; some will undoubtedly be very unpleasant. All we can do is work hard. We can, and must, do the best we can do, where we are, with what we have to work in the moment. We cannot stop change. We cannot even change the fact of its occurrence. 

The French say, “C’est la vie!” 

Many Americans say, “Get used to it!” 

I say, “Do your best, whatever that’s supposed to mean!”

What Worked – Part 1

This BLOG is the first of a three-part series about some of the efforts and techniques that helped my son, Andy, and me as we lived through his successful struggle with autism.

This BLOG is the first of a three-part series about some of the efforts and techniques that helped my son, Andy, and me as we lived through his successful struggle with autism. Perhaps reading about them will encourage others to try them (if they have not already done so). Even better, perhaps some of you will turn to the Readers Help Readers page on this website and share your successes with others. 

When (I thought) Andy and I had finished the first complete draft of our book about life with his autism, I sent a small sample of it to Temple Grandin, the well-known advocate for people with autism. I asked for her comments. As soon as she received the sample, she called me. She told me several things she thought might improve the book. She repeated one suggestion again and again. I must include loud and clear information about “what worked.” Without that, she said, all the rest of the story would be useless. I reviewed the book with her suggestions in mind and agreed. Indeed, I really must include specific and clear information about actions and techniques that helped Andy. I needed another chapter. As I wrote that chapter, I realized the information in it belongs on this website.

Of course, what I present in these BLOGs cannot be a complete guide to all attitudes and behaviors, all techniques that work for all people with autism. There can be no such guide, because—like all the rest of us—all people with autism are unique individuals. No two are exactly alike, and no two can be treated in exactly the same way in every situation. These are things that worked for Andy and me. As we walked our walk, I saw they often worked for others. I hope many, if not most, work for you.

Let’s start out with the most important first: LOVE. None of us is loveable all the time. Nor will your “special” person be loveable every minute of every day. Maybe not even, in some phases of their life, most of the time. But chances are you will love them through all of those phases too and—hard as it can be—you must let them know you do. Tell them so. You can tell them you do not always love the way they act, but you always love them. If they will allow you to, hug them, hold them, give them a pat on the back. They may act annoyed, they may repulse or reject your action. But they may welcome it even so, and it may help them to believe you love them despite their negative behavior. It cannot harm them.

Give them PERMISSION and PRAISE to be who and what they are, just as they are. It may be they will never be a “normal” person. That does not matter. You don’t even need to mention it. But there is some way they excel. Perhaps they always color everything blue. Okay. Tell them they color blue better than anyone else; it’s why they are special. You can suggest, in another conversation, maybe they’d like to color with red also, and be a star with two colors. It may not work, but it’s worth a try! If it doesn’t work, just say, “It was an idea; that’s all. I like your blue cows,” and move on.

One thing I’ve observed in virtually every experience and account of life with a person with autism: they have a strong need for CONSISTENCY.  Consistency in virtually every aspect of life: time, food and drink, toys, placement of furniture, fast food venues, clothes…. the list goes on and on. If you serve snacks at 10:00 am, you must not serve snacks at 9:45 am or even at 10:20 am. If apple juice always is the beverage at snack time, you must not run out of apple juice and serve grape juice with snacks. If you must do something like this, you know that a tantrum almost certainly will occur. Don’t move the living room furniture around while they are at school. If you really want to move the furniture, ask your child to help you. You might tell them you value their opinion about where to put things. Ask them if they think the new position of the rocker looks okay. If they say “No,” ask them where they suggest you put the rocker, and (we assume you don’t like any of their ideas) tell them why you think your idea is better and say, “let’s try it like this, for now.” If you’ve not been there, you may think this is not a big deal. If you have been there, you’ve got stories….

If you move to a new home, an unsettling experience for anyone, take special measures to ensure the transition is as stress-free as possible for your person with autism. You may need to arrange most of the furniture in your child’s new room (it’s not safe to put the bed against the radiator), but even a child with autism may be able to arrange toys and books in some semblance of ORDER. When they do so, they not only gain a sense of responsibility they gain both a feeling of control and the knowledge of where their possessions are. If the result turns out to be too chaotic, you may be able to “suggest” a more orderly placement of items. When this is too traumatic immediately, it may be possible after a few weeks, especially if you introduce the concept by saying, “I noticed you had trouble finding your favorite dolly. Maybe if you move the dollhouse over here by the dresser it will be easier to find dolly and her dresses. What do you think?”

TIME OUT can be a relief from a stressful situation for almost anyone, when it is immediate and brief. Depending on the person, it can be either in a separate room or in a room with other people. If, for example, the person is afraid of being alone, a separate room is obviously not a good idea. But if the person cannot stop interacting with the other people in the room, it is best if they can be separated from others. No Time Out should last more than five minutes, even fewer for a three- or four-year old. 

You are an extremely important person in the life of this person with autism. Be sensitive, be sensible, be sensational!