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!

Infinity

In 1979, we lived in Yorba Linda, CA, and wanted to move to Laguna Beach, a dream shared by many. We’d become such frequent lookie-loos in Laguna that our real estate agent, Annette, knew someday a sale would happen. She and I were friends by then.  “Whenever you’re in town,” she said, “give me a call and we’ll find a few houses to look at.” 

For two weeks that summer, we house-sat for some friends who lived in Laguna Beach. During our house-sitting stint, Richard was sent on a quick business trip to England. While Richard toiled away in England, I called Annette and set up an afternoon of house searching. We met at 1:30 and drove through several neighborhoods, viewing seven or eight houses, not one of which inspired me. Finally, at about 4:00, Annette pulled up in front of what looked like a dark gray concrete block water tank. She turned off the engine and put her hand on my arm. 

She looked at me seriously and said, “Before we go in, I feel I have to warn you about this house. It’s called Infinity.”

 I was curious. House? This is a house? Looks like a water tank to me. 

Annette continued, “Many people do not like this house. A few people do. However they feel about it, they feel strongly. I’ll be interested in your reaction.” 

“Okay,” I assured her. “I’ll let you know.”

We entered the house through a plain wooden door that was slightly to the left of the center of the rounded face of the structure. The door had a round window in it, a bit too high for my short stature. Inside, we walked through a curved entry to get to the hall. The kitchen was to the right and a guest bath to the left.

The kitchen was round, with a high service bar that opened out into the end of the large room to the right. Through the opening appeared a view down the canyon all the way to Main Beach and the ocean beyond. In the kitchen, all of the appliances were brushed stainless steel, which had not become popular as it is today. The surface of the countertops was dark Corian, also not yet commonly seen. The cabinetry was light-colored wood, ash or maple, and when I tested several of them, the drawers opened and closed silently and smoothly, as though they floated on air. The only color in the room was the royal blue of the ceramic tiles on the wall behind the countertops. Because the house was vacant, all surfaces were bare and starkly beautiful. 

From the kitchen we moved along the round wall to the large living room. Its back wall comprised the inside of the concrete blocks that formed the outer wall of the building. This wall curved to form an arc that came to a point where it was joined by the inner wall of the room. The inner wall, too, was an arc, made up of a series of large French doors that fronted on the canyon and presented the full view that I’d first glimpsed through the pass-through in the kitchen. The view also included the houses on the other side of the canyon, probably a half-mile distant. 

The wood frames of the glass French doors were painted white and from the far end of the room I saw that the inner arc continued all the way around to the other end of the house, where it again met the other end of the concrete block outer arc. Thus, the whole structure formed a section like a quarter moon. Except in the kitchen and bathrooms, all the floors in the house were covered with a deep-pile white carpet.

The living room, almost completely unfurnished, had three levels that stepped down from the same level as the kitchen to the lowest level that led out through the French doors onto a deck. On that lowest level, a white painted free-standing wood-burning stove was the only object in the room. The middle level was, to my eye, meant to hold huge pillows and afghans, and lounging conversations, while a grand piano surely should occupy the topmost level. Also, in front of the kitchen, outside the pass-through, there stood several tall stools for people who chose either to watch the cook or to eat what had been cooked. 

When I walked along the inner arc of French doors past the stools and the kitchen area, I came to the other large room on the lowest level. This room, intended to be either an office or a guest bedroom, also looked through its French doors across the deck to the houses on the opposite side of the canyon. The bathroom adjacent to this room had the same excellent cabinetry and counter surfaces as the kitchen. It also had a spiral shower. To get into where the water rained down, one walked through a spiral entry, so no shower curtain was necessary. 

On the second floor, the central circle directly above the kitchen was a studio or office space. When I saw it, it contained an architect’s drawing desk that displayed plans for the house. 

Most of the area over the living room was open to the roof, but—along the inner arc where the French doors were downstairs and similarly framed windows faced the arc upstairs—a walkway with a handrail extended across from the opening to the studio to the point where the two arcs met. This space immensely appealed to the child in me.

On the other side of the central circle, the master bedroom was a vast open space. The master bath contained a huge Jacuzzi tub and a separate, glass-walled shower. The cabinetry, of course, did not disappoint.

I felt I had come home at last, that Infinity was designed and built with me in mind. I felt more than that. I felt I was in a church. There was a unity in that house. It made me complete and, somehow, I completed it. It was not just a building, it was not just a home, it was a spiritual experience. Being in that space was a spiritual completion by, for, and of me. I had to live in that house.

Annette was patient. She left me alone and let me take my time. I went back and forth between the rooms. I tried all the drawers and doors. I checked the view from each room more than once. 

Finally I said, “We can go now.”

In the car on the way back to Annette’s office, I let her run through the list of the other houses we’d seen that afternoon. I made comments about each one and its good and bad points in the way we had of talking about houses, both of us knowing that I was not serious about any of them.

We went into her office and sat down. She fussed with some memos about calls that had come in. Then she said, “Are you alright?”

“I’m fine.”

“Well, I can’t tell.” Annette, a supremely confident person, looked puzzled, uncertain. “Usually, you babble on and on and I can’t get a word in edgewise. You’ve hardly said a word for an hour. What is it? Didn’t you like it?”

“I must have it.” My voice was strong, but it trembled slightly, too.

“Oh! I see.”

“There’s a problem,” I stated flatly.

“Yes,” Annette agreed.

“Three hundred and fifty thousand dollars.” I quoted the listed price of Infinity in an emotion-free monotone, as though it didn’t matter.

“Well, that’s only the asking price,” Annette reminded me. “They usually come down some. I’d guess three hundred and twenty-five thousand dollars, for real.”

“I’m willing to commit any crime. Possibly even murder. But I can’t get caught. There’d be no point.” I paused for a moment. “I’m going to have to think about this. How long do you think I have before there’s a serious buyer?”

“Well, I think (Annette named another agent) has someone ready to make an offer this week.”

“Oh. That’s a big problem. I don’t think I can move that fast.” I wanted to be realistic.

Annette looked at me inquisitively. She was beginning to understand how serious I was. “What are you going to tell Richard?”

“I don’t know,” I said a bit sharply. “That I have to have that house. He will say it’s impossible. And he will think that’s the end of it and he’ll forget about it and go on as if nothing had been said. But I won’t forget about it. I have to have that house.” I went on, “Can you help me figure out all the stuff about selling the house in Yorba Linda and all the available funds we have and all that crap, so I’ll know what the gap is I’m working to fill?”

Annette smiled. That was something she could do something about. “Sure.”

She and I met again in two days, and went through that exercise. The gap was pretty big. It was daunting. Terrifying. I had no idea where to turn, how to go about coming up with such a huge sum of money at all, let alone within a week.

*  *  *  *  *

The next day, Richard returned from England, exhausted from his travels. I barely greeted him. I let him get some sleep.

At breakfast the next morning, I said, “Richard, I have found the perfect house for us here in Laguna Beach. You have to see it right away. There’s a potential buyer.”

“Can’t it wait until the weekend?” he nearly whined.

“No,” I said. “That’s too late. We have to go this evening as soon as you get back from work.”

Richard saw Infinity. I saw that he thought it was interesting, but that was all. 

He spoke practically. “Our furniture will not all fit in that house. We’d have to give up some of it.”

“That’s okay,” I said. “The house is worth it.”

“How much is that house, anyway?” he asked.

I told him, “Three hundred and fifty thousand dollars is the asking price. But you know they’ll come down. Everybody does.”

“Not enough for us to come near affording it.” He was almost triumphant.

I felt deep disappointment that Richard did not experience Infinity in the same way I did. “Richard, I have to live in that house. It belongs to me. I belong to it. I belong in it. This is not a choice. The only dilemma is how to make it happen. Not whether to make it happen. Do you hear that?”

“I hear you say those words.” His voice revealed more than a little irritation. “But you are wrong. We cannot make it happen. Do you hear that?”

“Then I will have to make it happen by myself. Stand back.”

*   *   *   *   *

Annette showed me a way to get into the house without a key. For nearly a month I made two or three trips a week to visit Infinity. I went at different times of day, during the week and on weekends. Richard never went back. He had made his pronouncement and he, indeed, never gave it another thought. 

I spent every waking minute thinking about Infinity. I knew nothing about creative financing. I didn’t know anyone who did. I never did an illegal thing in my efforts to find the necessary money. Perhaps I should have, but the truth of the matter is that I didn’t know what to do, short of finding someone rich (I did not know anyone rich enough) and murdering them after I made sure they had a cool one-third of a million dollars on their person.

Then, early one afternoon when I arrived prepared to again break and enter, a car with a realtor’s tag on it was parked in the driveway. I crept around to the back and—idiot that I was—slipped through one of the French doors. A stereo on the middle level of the living room tiers played Smetana’s “The Moldau,” and when I sneaked up to the master bathroom I found the Jacuzzi bathtub full of hot water and bubbles. I knew I’d been overpowered. I beat a hasty retreat downtown to Annette’s office.

“Yes. I was going to call you later,” she said. “This morning, the agent closed the deal I told you about. They paid $328,000. You could never have come close. I’m so sorry. Oh Carolyn, I am so very sorry.”

“Well, I can’t really say it’s alright, because it isn’t. This is a unique experience. I’ve never been obsessed by anything, a person or an object, in my life before. But I have, now. It will take me a while to recover from this.”

 “Yes, you will recover. And we’ll keep on looking at houses. No other house will ever in your life be as wonderful to you as Infinity. But we will find one that you can live in, and live with. I promise.” Annette handed me a tissue to blot away the tears that had started rolling down my cheeks.

*   *   *   *   *

That was then and now is now. I know many things now that I did not know then. Had I known some of them then, I might have pulled it off. But thinking and saying that is merely second guessing. Many other paths have taken me in myriad unexpected directions since then. I cannot begin to wonder at how my life would be different now had I somehow manifested my passion. I know only that it was, indeed, a magnificent obsession while it lasted.

Thoughts About Aging

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.

Review of Teacher by Sylvia Ashton-Warner

Today I introduce a book in a review about five books, but especially about one of them, Teacher. The author is Sylvia Ashton-Warner, an English woman who went to New Zealand to teach five-year old children for two years and, instead, stayed there for the rest of her life. The main story of the five books is of romance but perhaps the stronger story is of her work with the Maori children. 

It is difficult to say who benefits most from that work—Ms. Ashton-Warner, the children, or the reader of the books. Ms. Ashton-Warner is a gifted writer; there’s no doubt about that. She was a gifted teacher, too, a teacher who instinctively understood that these children lived in a time and space, a world, entirely different from that she’d left behind. The rigid, proscribed and goal-driven methods of teaching would not, could not work within the Maori context. She must begin where these children were, and work from there. Not only that, she must do so for each child, not for the class as a whole. Each life, even by age five, was unique in experience and interpretation of reality.

Ms. Ashton-Warner listened to each child. She created a set of cards for each child. She asked the child for a word, then another. She added those words to that child’s set of cards. As time went on, they added more words; so grew each stack of cards. That set of words became that child’s Key Vocabulary. The Key Vocabulary was easily read; it rapidly became the basis of early writing. From that set of building blocks, work in other subject areas developed.

There’s not time and space here to do justice to Ms. Ashton-Warner’s insight and method. I encourage you to find and read a copy of Teacher. You will soon understand that this woman instinctively understood what most of us who love and work with people with autism learn as a way to teach them that quite often works, and works well. As one such parent, I can say only that I know this well. Before I read her book, I had done most of the things she did, and they worked for my son and me. I haven’t her talent as an author, but I can, and do, recommend a good story, a good read, and a good result when I see them!

My Earliest Memory

It is very dark. I am lying on my back in my crib. I have said all the words I know but one. I cannot remember one word. I say them all again, but the same word still will not come to me. I try again. Mommy, who always tells me the word I cannot remember, is in the next room. I know that, because it is dark and she is always there when it is dark. But she is not telling me the word.

I say all the words again, still missing the one.

Mommy speaks. “Hush!” she says. “Be quiet. Go back to sleep!”

She does not tell me the missing word.

I am upset and frustrated.

Why doesn’t she tell me the word like she always does? What is wrong? How will I know what it is? Is it lost forever? What if I lose more words before she tells me?

I cannot go back to sleep. I think, “If I were big, I would help, even in the dark.”

I was ten months old. My mother recorded the event in my Baby Book, which I still have.