|Communicating Partners, Spring 1996 Newsletter|
The following story is one mother's report on her involvement with the Communicating Partners Program in Columbus, Ohio. Barbara is an exciting example of what a parent can do to bring into the communicative world a little boy for whom much of society has few expectations. Barbara worked with me in therapy with Mark and translated the book, Becoming Partners with Children (MacDonald, 1989), into her busy life with seven children. Barbara has been an indispensable support for our newsletter, Communicating Partners. The book Becoming Partners is available from Applied Symbolix in Chicago, IL (1-800-676-7551).
From Isolation to Coversation. Building a Communicative Relationship with a Boy with Down Syndrome
I often think of the many things I have learned about communication development since my son, Mark, was born with Down syndrome eight years ago. At first, I wondered if he would ever talk; now we are conversation partners, talking together all day long when he isn't in school. I would like to tell about some of the most important things I have learned and share a few of our experiences. I hope this will help other parents and children enjoy more playful, communicative relationships.
First of all, I learned that children go through several stages before they start to talk. Like many parents, I assumed language just "happened" (or didn't happen for some children with Down syndrome). I learned that each stage is important and should not be ignored or rushed. Our children need to develop communication habits, not just be able to swords when requested to do so!
If someone were to ask me what I consider the most important thing I do with my son, it would be to have frequent interactions during the day. I never let him remain in his "own little world" doing "his own thing" for long. Children may be quiet and content playing alone, but they do not learn how to socialize and communicate this way. I watch to see that he interacts with someone, if not me, often when he is home. I have seen too many children with Down syndrome playing alone, watching TV, listening to tapes, and even talking to themselves, to let him do this. If your child spends much of his time playing alone, stop what you are doing occasionally and become involved in his activity. Or, get your child involved in your activity! This is the best way parents can help children learn to communicate and talk.
Social Play- Setting the Stage for Communication
I'll admit I never thought of all those silly baby games and sounds as the first stage of communication development, but that's what they are. Before anything else, children must enjoy playing with people. Think of yourself as your child's "best toy." Imitate those funny faces and sounds your baby makes as often as you can. Play "peek-a-boo" and "so big." Get your baby's attention by being silly. Crawl around together on the floor making animal sounds. Use your imagination and act like another child! It's the best thing you can do for your child's communication development.
Most of us think we have to spend lots of time "teaching" our child with Down syndrome how to play like other children. As my son changed from a baby into a toddler, I wanted him to stack blocks, do puzzles, match shapes and colors, and so on. I thought I needed to teach him the "correct" way to do this and spent many anxious moments watching him throw toys around the room because he wasn't ready to do it MY way yet. These playtimes became more stressful than fun for both of us!
I learned that teaching children with Down syndrome new skills is important, but not until they are developmentally ready. I learned the first thing he needed to do was to stay with people in increasingly longer interactions doing something together. What we did wasn't so important, as long as our attention was focused on the same thing and each other. I learned that this social skill is critical for success in school, forming friendships, and later getting and keeping jobs!
My new goal became to see how long we could play together doing the same thing. I decided to put away some of the toys that were too difficult for him, and let him show me how to play! I learned to watch what he did, then to play! I learned to watch what he did, then to play! I learned to watch what he did, then to play! I learned to watch what he did, then did something similar. I stopped being his "teacher" and became his "play partner."
Playing like a developmentally delayed child does not come easy for most of us. It seems too immature and childish. But it is often the best way to get their attention and keep them in interactions. I learned how to play with my son by frequently imitating his actions and sounds, as strange as it felt at the time. He liked it! He stayed with me, instead of going off in another direction, and our interactions became "successes" rather than "failures." I learned that while he could learn some things alone, he could learn to communicate only by interacting with people.
Sometimes Mark played (and still plays) in ways I don't understand. They seem almost autistic-like, even though he isn't autistic, but a very sociable little boy. Now I know that this type of behavior is common for children with Down syndrome. He sometimes lines things up in long rows, or does some other repetitive, seemingly meaningless activity, by himself. At first this almost frightened me, I didn't know what to do about it. As he has grown older, I have learned what to do when he acts like this.
First, I watch and listen carefully to see if I can understand what he is doing and saying, and why. Sometimes it's because there is too much stimulation going on around him - too many people are talking at once, for example, and he can't really follow what they are talking about. I believe he feels overwhelmed and wants the security of his "own world" where he can control the objects.
For a long time, he has liked to line up crayons. Instead of coloring on paper or in coloring books, he simply lines up the crayons and whispers softly to himself. I know that coloring is difficult for him, and he does this to avoid failure. Now that he talks more, I know what he is doing with the crayons, and I know what to do with him. He pretends that the crayons are children at school. Each crayon has a real child's name. He usually lines them up, and takes them to gym where they play "red rover." What seemed to me before as a jumble of crayons being pushed around the kitchen table by a noisy boy, is a real activity he lives with at school.
Now I imitate his actions, take a crayon and pretend it is a child too. He allows me in his play world if I don't take over control of what's going on, but follow his lead. As soon as I'm the boss, the game is over and he leaves to play something else. So, I've learned to make changes slowly, gradually adding new ideas, new actions, and new words as he is able to do them. He shows imagination if I let him take the lead. The bigger crayons are the teachers, or sometimes the "children" go to the cafeteria for lunch, and so on. I try to be playful and avoid being a "teacher" who insists on doing things her way, but bring out the coloring books gradually so he gets practice using crayons like other children.
Many children spend much of their time watching favorite videos on TV. Mark could spend eighteen hours a day doing this! I have learned how to get involved in this pastime by making comments, singing the songs, and dancing along with the characters. The important thing to remember is to keep our children involved and interacting with real people, not objects and favorite characters in movies. It's fun to turn off the movie and act it out with your child. It doesn't have to be perfect, of course, just fun.
Turntaking - Your Child's Next Stage
Most of us never think about communication development until we have a child who is language delayed. We eagerly wait for every new word our child says! I learned that the skill of taking turns back-and-forth with actions and sounds is often overlooked by parents who are in a rush for words. Unless children learn how to do this, they will not know how to stay in conversations no matter how many words they can say!
Reciprocal turntaking is like a Ping-Pong game - each person responds to what the other does and says before taking another turn. Most children learn this quickly, but it is more difficult for children with delays. With their slower cognitive and motor skills, children with Down syndrome often passively watch and listen to the rest of us talk. We just continue our interactions at a pace they can't keep up with, so we leave them out of many activities and conversations they would like to join.
I learned a very important parent strategy during this stage of my son's development - waiting. One of the hardest things for adults to do is wait for a slower child to take a turn before we do or say something else. We are in such a rush to get things done! I learned that almost everything we do with children - mealtimes, getting dressed, bathing, going places in the car, simple household chores - can become turntaking interactions if we wait and give them their turn to participate. They don't have to do things perfectly, of course, just have a turn doing something. Now that my son is a real talker, he sometimes reminds me, "Wait, wait! Listen to me!" I expect many children with Down syndrome would like to say this to adults, if they could talk.
Some of my fondest memories of my son's early childhood are of actually playing Ping-Pong with him. He was about three or four years old and wanted to do everything his older brothers did. This included playing Ping-Pong. He couldn't reach the table, or hit the ball, of course, but that didn't stop us. I learned that the best way to start an interaction with him is to follow his lead, so down on the floor we went with paddles in our hands. He hit the ball on the paddle to get the proper sound, then threw the ball to me. I did the same. He loved this game!
Gradually I changed what I did and introduced simple new actions, sounds, and words he could try. I remember, "Oh, wow!" was one of his favorite expressions at one time. He learned the meaning of, and how to say words such as "under," "behind," "in front of," "on top of," and "over there" to tell where the ball went. I added variety to the game by including Barney or one of his other stuffed friends.
Another turntaking game we enjoyed at this age was what we called balloon volleyball. He learned most of his colors by hitting balloons back and forth with me. This is a good game to play while waiting for doctors. You can carry balloons in your purse or pocket and take them anywhere. (It also keeps a child from getting into the medical equipment in the office.)
Finding ways to take turns is easy if you watch and listen to your child as closely as I do mine. It's fun to imitate their expressions, sounds, and words and make a little turntaking game out of them. Mark and I still have fun doing this. Last night we played with the word "substitute." While he was getting ready for bed, he told me his first grade teacher had not been at school. I asked, "Oh, you had a substitute?" This is a fairly new word for him. He repeated, "Yeah, a substitute." I asked what her name was. "Mrs. Tute," he answered. I laughed and said, "Her name isn't Mrs. Tute! She's a substitute teacher. When your real teacher is gone, you have a substitute." He understood, but knew he had a good joke going with me, and didn't want to end it. He insisted, over and over, that her name is Mrs. Tute.
Finally, I asked his brother what the substitute's real name is. He said, "Mrs. Riggle." Another good word for a game. We called her "Mrs. Riggle Wiggle" and "Mrs. Riggle Wiggle Giggle" until we couldn't laugh anymore.
Every turntaking game doesn't have to be this silly, but children enjoy us when we sometimes play like a child instead of an adult. Turntaking games teach children to stay interacting with us longer and longer each time we do it. Parents can help children develop their attention when we keep them for "one more turn" than before. Today, my son's teacher (the real 'teacher', not Mrs. Tute!) tells me he pays attention in class better than some of her other students. I believe our frequent and increasingly longer interactions have helped him develop this skill.
Where is my little boy who once pointed to his bottle and said "ba" when he was hungry? He'll get off the school bus soon, open the refrigerator, and probably ask, "Oh, man! Where's the Pepsi?" If he finds one, he'll instruct his older brothers, "Don't drink that, it's mine. Get your own!"
How did this happen? How do children learn to communicate and talk? Most parents know that when a child points to something, he wants it. We get it, give it to the child, and that's that. He's happy and we can go back to what we were doing. But if your child has Down syndrome, we need to do more than just satisfy his immediate needs and wants. We need to keep him interacting with those gestures and sounds.
I learned that responding to those first forms of communication is critical if we want our child to develop communication habits. Children must know they can get our attention and have effects on us, or they will stop trying. We need to understand that those first gestures and sounds are the "seeds" from which words will come. Each time we respond to them, we encourage our child to do it again.
A new parent strategy became very important to me at this stage of my son's development: progressive "matching". This means doing and saying what your child can do and say, then giving him a small step more.
Before I learned about matching, I thought I was teaching my son how to talk by saying, "Here's your bottle, honey. I don't think you need to drink so much milk; you're getting to be a little fat guy. Can you say 'bottle' for mommy? Good boy, you tried."
I wasn't helping my son learn to talk by talking in such long sentences; I was teaching him how to listen while I talked. Of course we want our child to understand us, but we must also show our child how to communicate and talk. I learned the best way to do this was to give him one or two words that he could try to say at the moment he was most interested. Instead of a long sentence, I simply said "ba...drink" each time he pointed to his bottle or sink for a drink of water. Then I waited for him to take his turn, expecting him to communicate with me. He continued to point and say "ba" for quite a long time, but I remember the day he said "drink" as an exciting day for both of us.
I learned to keep him in nonverbal interactions by imitating many of his actions and sounds, before I gave him the adult word. Children with Down syndrome need lots of practice doing anything they can back-and-forth with us to develop communication habits. I found that by responding, waiting, matching, and expecting my son to communicate, he always did. Now I sometimes have to tell him to stop talking. What a pleasure!
A good way to understand how children learn to talk is to imagine we are in another country, learning a new language. I've done this and I know how difficult it is. Everyone talked so much and so fast, I couldn't keep up with them. Unless we have a translator, we are completely lost and unable to communicate. This is probably how children with Down syndrome feel with the rest of us.
One of our jobs as parents is to "translate" our child's gestures and sounds into easy words they can say. We can also think of this as second-language training. Children have their own ways of communicating; we have to show them how to use ours.
The gestures and sounds children make usually refer to the people, places, toys, foods, and pets that are meaningful to them. As a translator, we can give them one or two words to try to say, at the appropriate times. We can do this all day long; communicating with our child should be a habit for us. Children learn to talk by having many pleasant social interactions during the day, not just during speech therapy with a professional.
I remember driving to my son's preschool every day as one long conversation for us. He may have only been able to say a few words at a time, but we turned them into very long interactions! We took turns pointing out the window and saying car, bus, truck, house, tree, motorcycle, whatever we saw. He liked to make the sounds of motorcycles, tractors, fire engines and police cars. He learned to say more words as other things became important to him: McDonald's, Pizza Hut, Taco Bell, Wendy's, the library, shoe stores, WalMart, and so on. As long as I matched, waited, and kept our interactions going, he continued to say more and more. Now he explains why he has to stop at these places, and what he wants to get.
Besides being a translator for our child's nonverbal communications, we can think of ourselves as "living dictionaries," always putting new words on our child's experiences. "Say what you see" is a good thing to remember when you don't know what to say. Be sure it is something your child is interested in or you will not get his attention, and you will end up talking to yourself!
A third helpful idea is to think of yourself as a "story partner" creating stories with your child as you play and go about your daily activities. My son loved playing in the bathtub. We have spent many hours talking about bubbles, boats, and other toys he played with in the water. He also liked to pretend he was Shamu the whale at Sea World, making whale sounds back and forth with us.
I remember playing hide-and-seek with all his stuffed animals. We played shoe store and grocery store, talking about whatever he could find in closets and cupboards. We pretended we were in "Mary Poppins" and acted out scenes and sang the songs. His words weren't perfect, but we had fun. He got lots of practice "playing with words."
He got so good making up stories, he tries to do this at school now. His teacher says he likes to go into the office and tell the secretary he needs to call his mother to come get him. He feels his head (or stomach), says he's hot, and isn't feeling well. Sometimes they almost believe him.
As my son and I have gone from being play partners to conversation partners, I see how important it is for him to feel successful in our interactions. I must still watch how I talk to him. If I put too much stress on him, he ends the conversation by walking away and doing something on his own where he can feel successful.
There are a few important ways I have learned to help him stay in conversations. First, I give him freedom to say what he can, how he can, without always correcting him. His words and sentences aren't perfect, but he thinks of himself as a communicator and initiates conversations and responds to others regularly. Staying in conversations is a habit for him.
I have learned not to ask too many questions. Most parents ask children question after question. We think it will start conversations, but oftentimes does the opposite. "What are you doing? Why are you doing that?" or "What did you do in school today? What did you learn? Were you good? Who did you play with at recess?" Our questions never end!
Much of the time children ignore us and don't answer our questions because we don't expect an answer or wait for it. I have seen how making a comment and waiting often gets more response from my son. "I wonder..." is a good conversation starter. Comments give children freedom to say whatever comes into their minds. They don't have to give a "correct" answer. "You look hungry," instead of "What do you want to eat?" "You look like you had fun!" instead of "What did you do?" "Time to get dressed!" instead of "What do you want to wear?" Think of ways to change your questions into comments, and your child will probably talk more. This does not mean we should never ask questions. We just need to be careful to ask only questions we really want answered and be willing to wait.
Another helpful thing I have learned is to make conversations out of our routine activities. They don't have to be long, or important - just frequent. If Mark is getting dressed for school, I might say, "That shirt is too small." This gives him an idea. He might get another shirt and say, "This one is bigger." I could add, "I like this new blue shirt." Adding more and more comments like this gives children opportunities to practice staying in conversations. It's an easy way children with Down syndrome will learn to make communicating with people a habit!
I had an experience last summer that showed me the importance of this. Mark and I were at a baseball game where his ten-year-old brother was playing. Sitting across from us was a mother and her daughter who had Down syndrome. The girl looked about twelve or thirteen years old. As I glanced occasionally at the mother and daughter, I noticed they never talked to each other during the game. The girl fixed her hair, tied her shoes, ate candy bars, drank pop, and watched the people sitting around her, but I never saw them talking together until the game was over and they were leaving.
Out on the ball field, it was totally different. The coaches were constantly interacting with the boys, showing them how to pitch, hit, or catch the ball. I thought of the term "communication coach" and understood this is how we need to be with our child. Children with Down syndrome will not learn how to stay in conversations by watching and listening to us, but by getting lots of practice "playing with words" the way coaches and kids play with baseballs. With lots of practice, they can only get better!
Letter from Barbara
How do you tell a child he has Down syndrome ... or any other disability, for that matter? What do you say to a child who tells you, "Tyler called me a dummy"?
This is something I have been thinking about lately and would like to know how other parents have dealt with this sensitive subject. Most of our conversations with young children are either playful or mundane, but sooner or later we need to talk about the more serious things in our child's life. We would like to hear how you have discussed Down syndrome with your child.
I recently asked Chris Burke's mother, Marian, how and when she told Chris that he has Down syndrome. They were in Columbus for a conference. Her answer surprised me. "I never really told him," she said. She explained that their family has attended so many meetings where Down syndrome was discussed, that it has always been part of their lives. Chris just grew up knowing that he has Down syndrome. But, she added, he doesn't feel he is different from anyone else. Watching Chris interact spontaneously with parents and children was a joy for everyone! He was not just a famous actor with Down syndrome; he was an easy communicating partner.
Perhaps your child has grown up like Chris, or maybe there was a particular time and place your child learned about having Down syndrome. We would like to hear from parents who are willing to share this information with us.
Understanding Your Child's Speech
Once children with Down syndrome begin talking, it is likely that they will not have clear speech at first. While most children's speech is not clear at first, children with Down syndrome usually have much more difficulty being understood than most children. This is as expected since Down syndrome usually involves slower development of fine muscular movements. Since their muscles are making speech harder for them, it is essential that we make sound-making as frequent and easy as we can for them. How do we do that?
First, make sure that you encourage your child's sound-making by habitually making sounds like his, BUT BE CAREFUL NOT TO OVERLOAD HIM WITH MANY MORE SOUNDS THAN HE CAN TRY. The initial goal is to get frequent "ping pong games" with sounds going back and forth; between you and him all through the day. Start by IMITATING your child's sounds whenever they happen, then WAIT silently for him to give a sound back, any sound at first. Throughout the day, think of sounds as your child's most important toy. Play with these "sound toys" back and forth so your child learns that the more sounds he makes, the more sounds he will get back that he can do; and the more attention he will get from people around him. Think how inexpensive and available sounds are as toys for your child. They are free and take almost no time and can be played with anywhere. Many children with Down syndrome make sounds mainly by themselves or to get needs met. The problem here is that they will simply not get enough practice and feedback to make talking a habit and to learn how others talk.
Many parents have learned to think of this process of moving from sounds to words much like second language teaching. These parents have learned that their child has her own language of sounds and movements, and their job is to translate these sounds and movements immediately into single words. Pretend a little Spanish speaking girl is visiting your home and she points to a light and says "luz". A natural thing to do is to say "light", thus translating her language into yours at the best moment for her to learn the word, when she wants to communicate about it. When we do the same with our children's unclear sounds and motions, the child tries again and often comes closer to our ways of talking.
USE THE FOLLOWING GUIDELINES TO GET INTO THE HABIT OF HELPING YOUR CHILD MAKE SOUNDS MORE LIKE YOURS.
WHAT TO DO WHEN YOU DO NOT UNDERSTAND YOUR CHILD'S SPEECH:
Communication Problems and Down Syndrome: Research Findings and Clinical Conclusions
Since 1971, I have conducted research and clinical services with over 200 children with Down syndrome and their families. The findings from this work have been very helpful in developing several tests and treatment programs for preconversational children. The following conclusions come from three sources. First, videotapes of over forty children interacting with their parents and clinicians before and after treatment programs; second, interviews and observations with parents concerning attitudes and practices affecting language development; and third, critical review of 30 years of developmental research.
Far Too Little Interaction. The majority of children with Down syndrome studied interact much less frequently, for briefer durations, on fewer activities and with fewer people than children of similar age and developmental levels. Clearly, children will learn to communicate and talk to the degree that they have frequent social contacts with others. Consequently, the most important way to help a child communicate may be to make sure they are interacting for increasingly more frequent and longer times. A major goal of our work has been to focus on four consistent goals for children with Down syndrome. To increase 1) the number of interactions with people; 2) the length of the interactions in terms of back-and-forth turns; 3) the variety of activities; and 4) the number of people who deliberately interact with the child.
It is my firm belief that the task of helping a child with Down syndrome learn to communicate can be much more efficient and effective if we insure that the child has a great number of natural approaches to practice communication at any level.
Too Little Playing in the Child's World. While most parents believe that play is important for a child's development, most think that playing with toys is the best kind of play. While a child will learn a lot from playing with toys alone, it is extremely important to realize that he will not learn to communicate that way. To learn to communicate and talk, a child must play regularly with people.
Too Much Stimulation. A common recommendation to parents of young children is to "bathe your child with language" and "talk to your child all the time". In order for your child to communicate, he needs two major things: models of things he can now do, and time to do it. Much research and parent reports show that children with Down syndrome are often barraged by much more language than they can try to do. At the same time, they are given very little silent time to try something. Often we see interactions like the following. Charley: Points to the refrigerator. Parent: "Are you hungry? I bet you want some juice. You like apple juice best. Okay, here it is." and the child drinks the juice without having the opportunity to practice communicating about it.
We teach parents such as these to communicate once and in a way the child can soon do (i.e., matching) then wait for the child to do something, anything, at first. Let's go back to Charley for a more effective exchange. Charley: Points to refrigerator. Parent: Points like the child and simply says juice then waits silently looking at the child expecting some kind of response. Charley: Points again and says "oo". Parent: "oo, juice"; then waits again. Charley: Points and says "oo". Parent: says "juice" and gives the child a sip of the juice then waits again. Charley: says "oo". Parent: "juice, more juice," gives the child another sip and waits again. Charley: says "mo". Parent: says "more juice," gives another sip then waits; etc. This parent is acting and communicating in ways the child can try; and the child does try. The parent rewards the child a little then waits for another communication - anything the child can do - then the parent shows the child a little next step ("more juice"). Be sure to make the most of such opportunities and not give the child the juice all at once. Operate by the rule "Keep the child just a little longer" and remember that every exchange is a chance to communicate.
Dead End Contacts. Our research shows that children with Down syndrome often have the habit of popping in and out of interactions without staying long enough to learn to communicate much. We also find that parents and other adults assume that if the child wants to leave they should allow the child to do so. But, if we believe, as we definitely do, that a child will learn to communicate only to the degree that she stays interacting longer and more frequently with others, then we will get into the habit of keeping the child a little longer. Think of your back-and-forth interactions with your child like insulin to a diabetic child. Without more and longer interactions, your child will not learn to communicate.
Getting Stuck Communicating Without Words. Many parents of children with Down syndrome are so happy when their child starts communicating in any way at all - little sounds and movements - that they accept these little attempts. That is as it should be. Long before a child talks, she will need to communicate with any kinds of sounds and movements she can do. We strongly encourage this. However, there is a potential problem here. We have seen many children stuck at communicating with old sounds and movements long after it is clear that they can say some words. Many, many times I have shown parents that their children actually do not need to talk, when they get attention for any old attempts to communicate. Then I have often shown parents that by simply waiting silently after a child makes an old sound or movement, the parents will see the child trying something a little more mature.
Not Knowing What to Say. Consider your child's job as moving from his own special language without words to your English language. Often when a child gestures, or makes a sound, he needs help to move from his language to yours. A very effective way to do this is to translate the child's sounds or gestures into a word. For example, when a child points to her sister, Janie, say "Janie", then wait. By doing this you are translating and giving her a word to replace her old gesture. We often then play with the word back-and-forth, treating words as the child's most important toys - as we would throw a ball back and forth.
Too Much School Language. Years of observing parents with children with Down syndrome tells us how important parents think it is to teach the child the language of school, often even before he communicates his own ideas. I have known many children with Down syndrome who can show words for the alphabet, numbers, colors, even a long list of animals they may never see; but the same children have few words for the things they are experiencing and things they want to communicate about. Be sure your child has words for communication before words for school.
Our approach, then, is to focus on helping the child learn words for two broad classes of things: their immediate experiences (e.g., fall down, hug, mommy, daddy, give) as well as words for the things they are already communicating without words (pointing to kitchen - eat, hungry; arms outstretched - up, hug or what ever you think the child means). Why are these words most important and more developmentally necessary than school words? These words are the things the child both knows and cares about. A child is more likely to use words that match his current knowledge and motivations. A child will have many more opportunities to practice talking with words that describe what he knows and wants than with words like red, three, and other words that have little daily communicative uses. Consequently, we encourage parents to give their child much more "communicative" language than "school" language.
The Habit of Supporting Old and Inappropriate Behaviors. One of the most difficult habits to change in parents is paying attention and talking to children when they are doing undesirable or immature things. A great many parents have told me that they feel it is wrong to ignore a child when he is misbehaving or communicating in some immature way. We have worked very hard to show parents that paying attention when a child does these things is much like giving the child a ten dollar bill for it, because parents' attention and words are often the most powerful rewards for a child. On the other hand, when we ignore those behaviors we usually see the child doing less of them and more of the appropriate and mature things. We teach parents to get into the habit of asking themselves "Do I want more of what my child is doing?" Then, if the answer is yes, they should talk and pay attention; and if the answer is no, they should momentarily pay the child no attention - no talk - nothing that would tell the child he gets attention for it.
Can a Child with Down Syndrome be Autistic-Like?
Children with Down syndrome often have a reputation for being friendly, social and enjoyable. Often this reputation is accurate, especially in the early years. However, I have followed up several children over a ten-year period and have made a very bothersome discovery. Many children with Down syndrome who were highly communicative as young children are now often withdrawn, socially isolated and showing several autistic features such as isolating themselves, doing or saying the same things over and over, talking to themselves, and overreacting to stimulation.
Kenny, at age 6, was very passive with people, responding in only single words and seldom initiating contacts with people. This was an added concern because at ages 3 and 4, he was much more social and communicative. After observing him in his classroom and with his family, we saw him as a very obedient, compliant child who responded to questions and commands but rarely played with others or engaged in conversations even though he knew the words. After a few months helping his parents and teachers reduce their questions and increasing their joint activity playtimes as they matched his actions with appropriate words, we saw Kenny become conversational and regain his enthusiastic interest in communicating the great deal of knowledge he had. What appears to have happened was that Kenny's family and school had been focusing on teaching school-related language rather than language appropriate for friendships and conversation. Here is another example of focusing on language as knowledge to be stored and performed rather than as a tool for relationships.
Matthew's mother, Becky, called me when he was eight concerned that he was isolating himself and in the habit of talking about irrelevant or bizarre things as well as doing old motions in apparently useless repetitive ways. Matthew had been a relatively passive child but at age five was beginning to talk more in conversations. This regression into autistic-like habits was a real concern. As I worked with Matthew and Becky, I saw that their relationship had become much more a teaching rather than a playful one. Then, as Becky returned to frequent playtimes with Matthew, he reduced his isolated ways. Becky also learned to ignore Matthew's inappropriate and bizarre language; her corrections and explanations seemed to be reinforcing just the strange behavior she feared. Becky also learned to show the boy how to talk about their immediate actions and to keep him talking about a topic a little longer. In earlier years, Becky had followed the book, Becoming Partners with Children, with success. Once Matthew began to talk, she forgot many of the matching and turntaking habits that helped Matthew at first. Becky used the material in the book as a practical guide to help Matthew have genuine conversations rather than talking alone in his own world.
New From Communicating Partners
BEFORE SPEECH - Daily Diary: This pocket-size reminder gives you one important developmental idea and one activity a day for one month. Use it to learn what your child needs to do before he talks and practical ways you can help him within your daily activities. Easy and practical. $6.00. For your copy, contact Dr. MacDonald at (614) 447-0010.
A NEW PUBLISHER OF ECO MATERIALS: Thomas Hutchinson, our original editor for both the ELI and ECO programs, now has a new company devoted to publishing practical tools for children with developmental and communicative disorders. The company's name is Applied Symbolix at 16 W. Erie, Suite 300, Chicago, IL 60610. While Riverside Press (8420 Bryn Mawr Avenue, Chicago, IL 60631) will still distribute ECO materials including the book, Becoming Partners with Children, Applied Symbolix will now be publishing revised and new materials for the ECO program. Write for their catalog.
VIDEOS AVAILABLE: The video tapes to train parents and professionals are available from a new company devoted to videos about child development. Write Margie Wagner, Child Health Media, 5632 Van Nuys Blvd., Van Nuys, California 91401.
COMMUNICATING PARTNERS CLINIC: Communicating Partners is also a new clinic. Contact Dr. James MacDonald and Dr. Paula Rabidoux for direct clinical and educational services as well as a new program of telephone and correspondence programs for building communicative relationships in the home. The clinic is also a center for practical resources for families and professionals. To obtain information call (614) 447-0010 or write Dr. MacDonald at 332 Mimring Rd., Columbus, Ohio 43202.
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COMMUNICATING PARTNERS is published four times annually by the Family Child Learning Center, 143 Northwest Avenue, Building A, Tallmadge, Ohio 44278. Phone number: (330) 633-2055/FAX (330) 633-2658
|Revised: February 22, 1998.|