Category: Recent Posts

Andy Speaks

CybeleLeave a comment

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

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.

CybeleLeave a comment

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!

Thoughts About Aging

CybeleLeave a comment

One day five years ago, while I cruised the Internet, I found a website that used certain information about the reader to predict their life expectancy. I answered all the questions and learned I can expect to live to the ripe old age of ninety-two-and-a-half.

That is twelve years from now, give or take a few days. Or one hundred-forty-five-and-a-half months, or six hundred and thirty-three weeks, or four thousand, three hundred and twenty-nine days. That’s a lot of opportunities!

I’m in excellent health, so there’s a good chance I will beat even those odds. That’s encouraging. I used to go to a Saturday morning Yoga class. There were a number of ninety-plus women in there, and they gave me a run for my money when it came to doing those exercises. That, too, made me feel optimistic.

I think “aging” is pretty much a matter of how you think and where and how you look. Until about two years ago, I thought of myself as a twenty-three year-old. Now, my initial, fleeting, thought is I am thirty-seven. My visual picture of myself, still, is the “girl” my first husband met when I was almost twenty-four. I get a big surprise when I look in the mirror. In truth, if I don’t look carefully right away when I look in a mirror, I do not see myself as I actually look now. It is as if I must clear away the young girl. I don’t think this is “foolish,” or “bad,” or “crazy.” I think it is one way I remain lively and energetic.

Another place to look is your calendar. If it is empty, so are you. Yes, you might “enrich” yourself by reading, even, perhaps, by watching television or doing puzzles but, if you do not truly interact with other people, that enrichment will become so much waste material.

Consider those people with whom you do interact. How old are they? Are they your age? Older? Younger? Why do you think you are attracted to them? For many years, now, I’ve had two distinct groups of friends. The members of one group, mostly women, are about five years older than I. These are the friends with whom I share both commiseration about the miseries of old age we all experience and fond memories of past decades, with a generous smattering of tales about grand- (and great-grand-) children. 

The second group, which for most of the past four decades has included more men than women, is made up of folks who are about fifteen years younger than I. We share interests in music, building things, science (with emphases on computers and aerospace), and books on many subjects, all written by exceptionally good authors. 

Last, but not least, my fourteen-year-old autistic great-nephew recently entered my life with persistence and a variety of interests to explore. He’s a keeper, too. Maybe he’s the harbinger of a new group of compatible souls? 

A good sense of humor is required, and characteristic, of all my friends.

Finally, look to the place where you find whatever it is that you know as spiritual connection. Some follow a proscribed system of beliefs and practices; others commune with nature; some claim no spirituality, but find communal spirit in the company of like-minded others. Whatever the form of connection, your relationship with it—the strength of your experience, the frequency of your conscious practice and, most important, the expression of it in your everyday life—becomes, in the final analysis, the ultimate summation of your entire life. It is how you will be remembered.