Dr. James MacDonald 332 Mimring Columbus, Ohio 43202 Phone/Fax 614 447-0768 macdonald.3@osu.edu

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Down Syndrome -- From Isolation to Conversation

I often think of the many things I have learned about communication 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 build and 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 say words 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 have to be frequent interactions throughout 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. He seems almost autistic-like, even though he isn"t autistic, but often 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.

Turn taking - 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 turn taking 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 more 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.

Nonverbal Communication

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 things like, "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 inter-actions 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!

Learning Language

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, Wal-Mart, 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.

Having Conversations

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!

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Dr. James MacDonald 332 Mimring Columbus, Ohio 43202 Phone/Fax (614)447-0768 macdonald.3@osu.edu