Einstein Syndrome: Down Syndrome with a Positive Attitude

This morning I spoke at a mother/daughter tea sponsored by SMILE on Down syndrome, our local DS support group. This is the prepared text of that speech.

Introduction

I titled this speech “How not to be a therapy mom” because we live in a time of enormous therapy opportunities for our children. Even when we aren’t hiring the hundreds of therapists available to us, we already know enough of what we ought to be doing to keep us busy for years… and to keep us full of guilt for not doing it all.

Therapy– teaching, training, shaping — can take over our lives, our families, and our child. But we are more than therapists. We are mothers. Of all the people in the world, we are the ones best equipped to have that heart to heart, emotional connection with our child.

The biggest handicap that an adult with Down syndrome may have is not if he can’t add and subtract and read, but if he can’t interact with people.

According to Dr. Jim. MacDonald, a specialist in communication at Ohio State, children with DS interact with fewer people than other children of similar age and developmental levels. When they do have someone interacting with them, the children with DS interact on fewer activities. The interactions are shorter than that of other children. And they happen less frequently.

Our children already have so much to overcome to become communicating people, but on top of that, the people around them are not engaging in communication with them. People with DS then grow up without the social skills to interact in society.

We mothers can change that for our children. We have built into us a natural ability to reach the heart of our child and teach them social communication.

We need to change our thinking from being therapy moms, to being communicating partners with our children.

This morning we’ll see that becoming communicating partners is 1) natural, it is 2) effective and it is 3) the only way our children will become engaging social people.

Natural

The first reason that mothers should become communicating partners is that it is natural.

I have been the mother of nine babies. When I had my first 22 years ago, it didn’t take me long to realize that I was Ruth’s favorite toy. She had a box of baby toys, but nothing satisfied so much a just playing with mom. And, if I am honest, I’ll admit that nothing was so fun as playing with my baby,

When Ruth was nine months old she learned to sniff. [To do this, wrinkle your nose and make a loud inhale and exhale.] She just learned it, so of course she had to practice it a thousand times. We played with it. First Ruth would sniff; then I would mimic her. She’d look at me and repeat it; I’d repeat it. Then we’d burst into laughter, ‘cause there’s nothing so fun as sniff-talking with your mom.

Do you see what happened? Practicing sniffing became a conversation…. back and forth turn-taking.

Let”s take a minute and define “conversation.” Right now I am not having a conversation with you. I’m doing all the talking, and you are listening. But a moment ago I had a conversation with Andrea. She said something; I said something. She said something; I said something…. back and forth turn-taking.

Two weeks after sniff-talking, Ruth discovered consonants. Dtah, dtah, dtah, dtah, tttth, tttth, ttttth, gha gha. We played with them. Her opinion was that these are all very fun to say, especially if your mom says them too.

At this time I had no training with communication theory. I was just doing what felt good as a mom.

1) I was my baby’s favorite toy.
2) I watched my baby and responded.
3) I modeled what the baby could do, and then, sometimes, added just a small step more.
4) I took turns with my baby.

Fifteen years later, I was working at the dining room table, trying to finish reading a book about communication therapy. Actually, it was Dr. MacDonald’s book, Communicate with Your Child. My youngest, Anna, was about 15-18 months old.

Anna came and stood quietly by me; I noticed that she had a folded newspaper on her head. It covered her entire head. She just stood there, waiting.

I was busy.

Ladies… we are always busy.

I had a choice. I could study about teaching communication, or I could communicate with my baby. It was the most natural thing in the world to slip out of my chair, sit in front of her, touch the newspaper and say, “Hat.” Then I waited to see what she would do next. What happened was several minutes of back and forth turntaking, with lots of laughing and interaction.

If you can get out of therapy mom mode, you’ll find that being a communication partner taps into a natural mother-skill.

Effective

The second reason that mothers should become communicating partners is that it is the most effective way to teach.

Kids with Down syndrome have a reputation for being stubborn. Have you experienced it…that infamous stubbornness? There is a theory, you know, that the stubbornness gene is on Chromosome 21, so it is triplicated. It’s right up there next to the cuteness gene.

Here’s the reason for the stubbornness: Our kids spend their lives with others being in control of every interaction. They are almost never an equal partner in a social setting. So they resist. The stubbornness is saying, “This is not what I’m interested in right now.” The one-way social interaction with our children is not an effective way to teach.

We spend a lot of time and effort teaching our children school words, (letters, numbers, colors, names of animals they may never see), but those aren’t the words they need the most to be social people.

I need to help my child learn words for what is happening in her life right now. Those are the words she cares about. People learn 1) what they care about learning 2)when they want to learn it. Our children learn what they care about learning when they want to learn it.

What do our children care about? What they are doing right now. This activity, right now, is where you can teach, if you join her in the activity.

1) You are your child’s favorite toy..
2) Watch your child and respond to what she is doing.
3) Match what she is doing. Wait for a response. Model what she can do, and then, sometimes, add just a small step more.
4) Take turns with your child.

Let’s look at an example.

Let’s say Ben closed the door on her fingers. Anna, age 1, is traumatized and crying.

She has initiated communication (crying), expressing emotion. My first inclination is to take control of the interaction, and get her to stop communicating that emotion. (Hush, you’ll be all right, Shhh, shhhh). Instead, here is my conversation with matching and turn-taking.

Anna comes to me crying.

“Ohh… hurt!”

She still cries.

“Crying,” I say. (Her ability now is one word at a time, so I am matching that with words for her experience.)

She still cries.

“Fingers!” (I give her more words for what she is experiencing)

She still cries.

“Door”

She still cries

“Ben!” (See, I let her know that I understand!)

She still cries.

“Anna crying” (I put words to what is happening right now.)

Her crying subsides somewhat.

“Hurts” (After a few sentences, Anna begins agreeing with me, stifling the crying and repeating the words.)

“‘urt” she says, spoken through her sobs.

“Fingers”

(“binger”)

“Hand”

(“and”)

“Kiss hand”

(“kiss”)

“All better”

(bet’)

1) I watched my child and responded to what she was doing.
2) I Modeled what she could do, and then, sometimes, add just a small step more.
3) I waited for her to respond.
3) I took turns with my child.

When she was two, Anna fell forward off of a height and landed (smack!) on her face. She was crying. Of course. So I started loving her, and giving her words for what she was experiencing right then.

“Anna crying.”

(“cy,” she sobs)

“Fall down”

(“down”)

“Hurt head”

(” ‘urt ‘ead…” then she adds while pointing, “….nose….eye…mouth”)

Without me taking the initiative to communicate at the level she could understand, I do not think she would have been able to initiate that complex explanation of her problem.

Being a communication partner for your child is natural, and it is an effective way to teach.

Only way

The third reason that mothers should become communicating partners is that it is the only way our children will become engaging social people.

I’m going to say something obvious, but I want you to hear this: Your child can only learn to communicate by communicating with people. The more she communicates with people, with back and forth turn-taking, the more she will learn to communicate.

It’s hard to give up control and become a partner, because we feel responsible for teaching. But the more you give up control, the more your child becomes social and communicative

How do you do it?

By waiting. Wait for the child’s response. Give up control and wait. After you take a turn, wait expectantly for your child’s turn. Try to keep your child in the communication for one more turn. When you get a response, it is your turn. What can you do to respond back and get another response?

As you do this, avoid asking questions. At first, I had no clue how to maintain a conversation with someone who did not know how to maintain a conversation. What usually happened is that I would ask a question, my daughter would give a one word answer, and that would be the end of the “conversation.” We moms like questions, because they put us in control. But questions are a conversational dead end.

I had to learn through trial and error how to keep communication interactions continuing with Mary. I did it by matching her words and her sentence with something on the same topic and level.

For example, Mary comes out of her room and says a sentence. “I have my blue shirt.” I want to keep a conversation going, but I resist the urge to ask a question. Instead, I match her sentence with something on the same topic and say, “It has yellow butterflies.” And wait. It’s her turn.

Conclusion

1) Realize that are your child’s favorite toy..
2) Watch your child and respond to what she is doing.
3) Match what she is doing or saying. Wait for a response. Model what she can do, and then, sometimes, add just a small step more.
4) Take turns with your child. Keep her in the interaction for just one more turn.

As you do this, you will find many times when you both burst into laughter, ’cause being a communicating partner with your mom is just so much fun!

Do you want to have more fun and get better results?

People with Down syndrome aren’t learning social skills, but you can change that for your child.

Mom, be a communicating partner with your child.

… just one more turn.

Acknowledgement

I’m indebted to James D. MacDonald and Barbara Mitchell for much of the content of this speech. There are probably direct quotes from their material that are not indicated as such. So, if you see something that sounds too profound to have come from me, it probably came from one of these pages. Actually, if you are the mom of a child with DS, get your self a cup of tea and go here. You will find a set of old newsletters from Barbara Mitchell (look at the drop-down list in the upper right). She brings us into her home and we get to savor the interactions she had with her son as they learned to be communicating partners. Barbara’s letters are full of wisdom and practical insight in how to make make communicating with your child into a delight. Definitely worth your time.