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

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!

You Cannot Help Doing Your Best

When my developmentally disabled stepson Andy reached ten years old, we felt we needed a professional evaluation of his potential. Our goals were to ascertain the best educational placement for him and to predict a long-term prognosis for his future, so we could make plans for what might lie ahead.

We took him to The Exceptional Children’s Foundation at the Johns Hopkins Hospital Clinics, in Baltimore, Maryland, a highly esteemed institution. We had great expectations as we approached our two-day sojourn there. We were to be greatly disappointed. 

Everything went wrong, mostly because the testers did not pay attention to the materials Andy’s teacher and I had provided. By the end of the second day of tests, when we were called in for The Evaluation, our hearts were heavy. We were prepared for the worst but we could not, even so, have anticipated what we heard.

“Your son is untestable. He will never learn to speak. He will never learn to read or write. You must put him in an institution immediately. If you do not, his care will cause your marriage to fail and damage any other children you might have. He will be a drain on society. There is no alternative.”

I felt so angry, I dared not speak. 

The next day, as we drove home, Richard began to talk about placements. I agreed to visit two boarding schools, but we could not afford to spend Richard’s entire salary on either of them. I would not have agreed to spend a penny on such a venture, anyway. I knew Andy would talk like the rest of us. (I did not, then, realize he had brain damage and a linguistic challenge.) I knew he would read and write, and live alone, and have a job and a car. I knew I would help him realize these things; and I knew no one and nothing would stop us.

When Andy reached adolescence, as happens to many autistic/schizophrenic youth, he often became violent. While I underwent the most frequent expression of his temper, others felt it too. The private school he attended expelled him. He then went to a succession of public school classes before he finally landed in a good situation in a high school class with one major advantage. They had a contract with Goodwill Industries for job training; Andy participated in that program.

However, his temper frequently got out of control on the high school campus. One day, his guidance counselor called me. He told me Andy had so much difficulty because I put too much pressure on him to be “normal.” He said, “Andy will never get a job. He’ll never have a place of his own and a car. He’ll never go to college. You have to tell him he cannot do these things so he won’t feel so much pressure.” I argued with the counselor, but I could not, in the end, argue with the fact Andy had fights almost daily, so I agreed to an experiment. I would try to do what the counselor recommended.

That evening, I talked with Andy. I told him the counselor called and told me about the many fights. The counselor thought Andy had too much pressure. I said, “Maybe you won’t be able to have a car and a place of your own and go to college, after all. Maybe you don’t have to try so hard. Maybe you can take it easy.”

It didn’t work. Things didn’t really get worse. They couldn’t get much worse. But Andy became angry at me again. He didn’t act violent toward me; he just stopped talking to me. Busy in graduate school, I really didn’t think about it or pay attention to his anger, in the moment.

He did graduate from high school. He got a job. He went through an independent living program and got a car and his own apartment. When Governor Jerry Brown mandated each state hospital had to hire a quota of developmentally disabled persons, Andy became the first person hired at Fairview Developmental Center. (He retired from that job, with full benefits, forty-two years later.) He also attended the community college, where he took art classes. With twenty-three years of diligent effort after work and on weekends he got his AA degree!

After the first couple of years of independent life, however, he went through a pretty rocky period of clinically significant psychosis. During a touch-and-go month, he managed, with the help of many friends and his parents, to keep his home, his car, and his job. One morning, after a 3:00 am bail-out by his Dad with a tank of gas in the middle of nowhere, he called me in a rage. He ranted for nearly an hour about nonsense. Finally, he started talking about the time I’d told him he couldn’t get a car, a job, or a college degree. 

“Why did you do that?” he screamed at me through the phone.

I sensed, somehow, this to be the crucial point of everything. I took a deep breath and paused to be sure I got it right.

“Because,” I said, “the counselor told me to. I didn’t want to. I didn’t think it right. Remember? I always said you could do those things. I always believed in you. I had worked hard for years to help you get that far, and I wanted you to go all the way. But you were having big problems at school. You were fighting with the other kids all the time. The counselor told me it you did it because I put too much pressure on you, and I had to stop. I had to make it easy for you. The counselor said the teachers and the principal all thought so, too. I didn’t like it; I cried. But I had to do it. They were the authorities, and I just the parent. You see? I did the best I could do!”

A long pause followed. 

All the rage gone from his voice, Andy said, “I didn’t know all that. You should have told me.”

We talked for about a half-hour about that, and other things, too. His psychotic episode ended right then.

I learned a valuable lesson from that experience. Something I’d said for years is true. We all do the best we can do at any moment in time with whatever we have to work with: ourselves, our minds, our feelings, our education, our experience, our caring, our surroundings. Right now, this minute, in this circumstance, we do what seems best. It is the best we can do; we can do no different and no better. No one can judge us for it. In that situation, they would do just the same. What we do is the best we can do.

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