Wednesday, January 7, 2009

Another Lost Treasure Found: My Mother’s First Public Speech in 1972

To put this speech in context, the reader should know that I was born deaf in January of 1965. People told my mother I would never learn to talk or anything. My mother would not listen to these naysayers. By the time of this speech in the summer of 1972 at the biannual convention of the Alexander Graham Bell Association for the Deaf, I was speaking, reading, and attending a private Montessori school.

I do want to point out that today deaf children grow up with high-powered hearing aids and cochlear implants and develop hearing, speech, and language skills very rapidly compared to the children of my generation. We depended on lipreading and primitive hearing aids. We were basically visual children and lipreading was the most important skill to learn as babies. It took many years of intensive speech therapy for me to learn to speak clearly and understandably. My speech has continued to improve over the years, especially since my cochlear implants in 1991 and 2007. Today I frequently recognize words, phrases, sentences, without looking at the speaker, due to the vast improvement in my hearing and ability to process what I hear. Children today grow up functionally hearing or only mildly hearing-impaired due to their cochlear implants. I’m quite frankly jealous of today’s children.

I believe this speech can be of interest today for its description of what it takes to educate a handicapped child, the time, love, and enlistment of the community involved. The importance of teaching language and being aware of a child’s need for play and interaction. For those of us who wonder what this is doing on a blog about children’s books, I point out that the speech also talks about making personalized picture books for the young child of their day-to-day experiences as a way of teaching reading. If I locate those books, I will post images at a later time.

So, imagine my beautiful young mother speaking before a crowd of parents of deaf children, educators of deaf children, and adult deaf people:

My remarks this afternoon can be summed up in three main points. First: as parents we are told that we must talk as much as possible to our hearing-impaired children. I’d like to look at the other side, at the silences in between.

Second, I want to discuss the rest of the child, not just the handicap we are so familiar with. What are his strengths? How can we help him learn through strength?

Finally I’d like to say something about help for parents, about borrowing people.

When we first find that our child is deaf and we ask “Will he ever be able to speak?”, what is it that we really mean? I don’t think we mean just a simple labelling of objects and utilitarian needs. I think we all regard speech as more basic to our human nature, as self-expression.

There are two parts to this broader definition of speech, the first is self. Our children must have a strong concept of themselves, their unique identity, their value in the world in order to want to say anything. A great portion of our thought and effort as parents goes into helping our deaf children achieve self-respect.

The second part of the definition is expression. A child with a good feeling about himself and his world will want to express that to someone. So there must be someone there to receive what he has to express. Long before he can express himself in words, he will be giving of himself in smiles, and the little objects he brings us, and the little games he invents to play with us and alone.

Piaget said that Play was the language of a child - and as parents of a young hearing-impaired child we really have to learn to understand and receive that language, we have to be observers and acceptors.

Somehow, because of our uncertainties and the desire to help, we can see ourselves as having to talk, talk, talk all the time. We are Lord and Lady Bountiful who have such a rich heritage of language to give to our child, to pour into him. We can really swamp him with language, and it is very difficult for anyone to always be on the receiving end.

For a normal child language development is a give and take sort of situation, and we must create that kind of sharing experience for our hearing-impaired child.

As an example, suppose you have 30 minutes or so to be with your child after breakfast when the older children have gone off to school and before you get busy with the work of the day - what do you do? Do you bring out special games and materials, fix your child with a beady eye, hold up a toy near your mouth and prepare to talk constantly for 30 minutes? I don’t think so. I think when you get more relaxed you find that if you talk more than 10 minutes out of the thirty, that’s a lot.

What you are doing is sitting on the floor by your child while he plays. By your presence you are communicating: “I love you, I want to be with you, I like what you are doing and would rather share this time with you than dash off and clean the house, or whatever”. And you wait, watching him, for that moment when he has completed what he wanted to do and he turns and looks at you. When his eyes meet yours, you hold them with a smile. First a smile, and then as eye contact develops into longer and longer periods, you have a chance to add a word or two to your smile.

It doesn’t matter which words. There are no special lists of 100 first words for a deaf child to learn. If we have shared experiences with our children, if we have been “receivers” and “observers” the appropriate words come easily. If he loves to build with blocks, then the words are block and build. It would be silly to try to play and talk about balls when he is not interested.

What we are doing, through body language, is communicating our joy and pleasure in our child. We have entered into the game, passively, receptively - and now maybe he will be ready to enter our game - with the same materials, but with words, too.

How do we teach a young child? Not by talking, but by doing. Young children learn by imitation. If we want our children to be good lipreaders, to develop good eye contact and a long attention span for language, to be patient and accept frustration and not give up, to accept willingly all the special teaching necessary for so many years, then we have to be the model. We have to learn to watch first, before we can expect our children to watch. We have to be patient and attentive to our child’s activities if we want him to develop perseverance and concentration.

As we give him ourselves as a model, as we struggle to develop the skills that he must develop, we learn to respect him and help him respect himself.

So it gets back to that concept of self and how we help our child develop faith in himself.

First of all, we have to know our child and take a good look at just what sort of person he is.

One of the unique things about a hearing-impaired child is that he is many children rolled into one. Because of the many different effects of the handicap on the various aspects of development - social, emotional, physical, intellectual - a “typical” 4 year old deaf child may range in abilities from 18 months to 6 years on a normal developmental scale.

Many disputes between parent and deaf child come because we misread where our child is developmentally in one particular area. Because we know him to be immature in language and social responses, we may deny him the opportunity to act more maturely and independently in an area in which he is competent. We frustrate his natural abilities and needs and his good self-concept.

On the other hand, knowing him to be mature in one area, we expect too much of him in another, putting on the pressure and ensuring that he will fail and lose self confidence.

Let us look at this “stereotyped” 4 year old deaf child more closely. His most immature area would be his language abilities. Like an 18 month old he may have a small spoken vocabulary of under 100 words, and a larger “receptive” or “lipread” vocabulary. In language-learning situations he might be struggling with the terms “put it in the box” and “take it out of the box”. A normal 18 month old is actively learning with his entire body, actually putting things in and out of boxes at the same time that he is learning the verbal expressions for his actions. The whole process is exciting and stimulating for him.

Our hypothetical deaf 18 month old is equally excited by the motor activities of putting in and taking out, but he cannot learn the words for his activity. Instead, he forms a non-verbal image in his mind. Years later, when his language training has come to the point of teaching him the verbal concept, he is no longer interested. His intellectual abilities, his desire for challenging situations, all have matured beyond the 18 month level.

Because language learning for a very young deaf child is not an organic part of his total life experience, it is always remedial and often dull.

Our child is no longer vitally interested in the concepts being presented. Teachers and parents have to use every trick and technique, brightly colored games, loads of individual attention and love, to make language learning palatable. It is absolutely necessary, the largest portion of every day is spent on this remedial learning. But we must remember that it is not food for growth of a good self image.

Physically, this 4 year old deaf child will probably behave at a 4 year old level - unless there are other handicaps. He will enjoy the same games, the same explorations of his body in space. We must not be so concerned with language training that we cut back on opportunities for physical growth. Here he can be successful. Many of us try to find extra help for our child in his area - Park District or “Y” programs in gymnastics, swimming, dancing, etc. Remember that large freely moving group activities may be more difficult for our child because he may get bumped and buffeted as he cannot hear the children running up from behind him and may not get out of the way in time.

Emotionally, a 4 year old deaf child will probably already be retarded - and might be functioning at a 3 year old level. He will miss the tone of our voice which conveys our emotions, he will miss the quick interpersonal communication of emotions unless we devote time and thought into helping him become aware of his own feeling and those of others.

But in at least one area he will be in advance of his actual age - in visual perception he may be the equal of a normal hearing 6 year old. Our deaf children live by their eyes and they train them very early to perceive many details. My daughter, Jenny, while running down the hall to greet her father, noticed that he had bought a new watch band that day. I wouldn’t have noticed for a week.

This is the area of greatest curiosity, of quickest learning and intellectual excitement for a deaf child. In learning visually he can learn through success, through areas of strength, not areas of weakness.

The question is not what our children perceive, but what interpretation they place on what they perceive, what conclusions they draw. And that depends on their total experience and knowledge of the world.

Having just discussed such a stereotyped view of a “typical” deaf child, I want to emphasize that each child is different, in each the combination of handicap, home environment, training, overall health and intelligence and many other factors lead to a unique individual. Only parents are in the position to truly observe and know their own child in all his diversity. It is the parents’ responsibility to make sure the total program, the total environment for their child will help him develop at ability level in each area. If the school program concentrates almost entirely in the language area, then at home we must provide the balance.

In the verbal area our child is immature and dependent on us and our face. We must help him be independent and successful in many other areas. Can our 3 year old dress himself? Do we provide simple clothes so that he can? Do we have low hooks in the closet and low shelves in his room so that he can get what he wants and put it away by himself? Can our 6 year old go into a store and buy a loaf of bread by himself? Can our 8 year old cook dinner for the family?

How do we help our child satisfy his curiosity about the world, his hunger to understand what he sees happening around him? It is an article of faith for me that a hearing-impaired child can learn as much about the world through his eyes as a normal child can through his ears. It just takes more thought and planning on the parent’s part.

We must look at our small shared vocabulary as the chapter headings and be prepared to provide a whole chapter of information through visual means - through pictures and pantomime. Later on, as our child’s language grows by leaps and bounds, we can look at that shared language as not only the chapter heading, but also the summary paragraph under the title - 5 or 6 long explanatory sentences. But we will still need to provide all the detail of the full chapter through visual means.

For example, think of taking a normal hearing 3 year old to the zoo. We would talk a great deal,, about why he has to wear his jacket because it is chilly, about staying close to us so he won’t get lost, about the names of the different animals as we look at them, perhaps even reading to him the offical descriptions. We would tell him why we cannot feed some of the animals and why we can feed others. And after a long, tiring day with its good and bad moments duly commented on, when we put him to bed at night we might tell a bedtime story about the adventures of the day and relive the experience together.

For our hearing-impaired 3 year old there are some differences. We may be teaching him words like zoo and bear for the first time. With prior preparation he may understand “We are going to the zoo”, “We will feed the bears”, and a few organizational comments like “Put on your jacket”, “Stop”, “Wait”, “No”, “Hold my hand”, “Don’t run”, etc.

We must communicate the rest visually. So we take our polaroid camera with us and take lots of pictures of everything we see. After we’ve been doing this regularly for a while and our child can recognize that not only is the photograph a representation of reality, but our quick stick figure drawings are also reality, then we can take fewer pictures since it does get a bit expensive. I like a polaroid because you have the picture immediately, while you still see the event instead of 3-4 days later when it has been forgotten.

As our child looks at the photograph and back at the real situation, we have helped him zero in his attention on important details. We have helped him organize his own observations. And we have communicated our ideas and observations, since we are taking pictures of what otherwise we would be talking about and describing in words.

So we take pictures of the bears begging for marshmallows, the elephant sloshing water on its back, the children eating cotton candy, little sister crying when she loses her balloon, and many more.

When we get home we make a book, filling in the story with stick figure pictures, helping our child learn to sequence his observations, to think visually of before and after, cause and effect. And we write a few words under each picture - some of them from our shared vocabulary and some new. And then we act it out. Our child gets behind the rungs of a chair and begs for the imaginary marshmallows we throw, and we pretend to be our child happily eating cotton candy, and our child pretends to be Daddy when he is tired and little sister crying when the balloon sailed into the sky. Through the pantomime game we help our child become aware of his own feelings and those of others. Facial expressions are hard to catch in a photograph, but in pantomime we can exaggerate and make the feelings clear.

We can communicate to a hearing-impaired child anything we could communicate to a normal hearing child of the same age. We have to think clearly what it is we want to convey and then think how to do it. But it takes a lot of time and effort.

It is very hard to find enough time. We all have many other commitments - particularly to other children in the family who, no matter how old they are and how understanding, cannot help but feel left out and jealous of the quality of attention and concern we give our deaf child. So we have to find time to give our other children their turn alone with us.

There are just not enough hours in a day for all that could be done, and that is a great burden on parents, I think that after you sit down and figure out what the demands are and what resources you have - physically and emotionally as well as financially, then you have to go out and get help - you have to borrow people.

I don’t know any other word for it - you want to borrow their interest and their help.

The first group to go to is the 10 to 14 year old age group. It is a very compassionate age, very creative and very energetic. They have a great desire to be useful, and you need them. You will have to explain that you want them to play with your child and you will have to teach them how. How to develop eye-contact, to always look into your child’s eyes, and how to play: babbling games with a baby, or ball games with simple words to a toddler, or card and board games with structured language for an older child. Once they get the hang of it they will be more imaginative than you. So look for neighbors’ children or see if you can get your child “adopted” by a local Girl or Boy Scout Troop. Then someone your child will enjoy can come over after school for 40 minutes or so and give you free time to be with another child, or start dinner, or just go to your room and close the door and have the time for yourself.

Senior citizens’ groups are another area to investigate. There are many people who have no grandchildren near and would enjoy the chance to rock a young child and sing and read to him. Again, you would have to tell them specifically what you need - someone to play with language with your child - and show them how.

You can go to your church and minister and explain what you need: time off for you and a chance for your child to broaden his experiences in lipreading and language.

You can borrow normal children, for example - a baby who is just learning to repeat sounds and words for your older deaf child to “teach”. His mother will then return the babysitting favor and give you the rest you need. Children the same age as yours are very good to borrow, not only for your child, but for you to see what normal is and realize how much we demand from our deaf children that we would never dream of expecting from a normal child. We ask more and they give us more and we should be appreciative.

In a way you borrow the interest of your neighbors and your community. It all starts when someone comes up and says “Oh, what a pity about your child, what a tragedy.” If you fall apart on the spot that doesn’t help anyone. You have to find that steel in your soul to say “Well, it happened. And he is in a wonderful training program where he is learning to lipread and speak and eventually he will have as fine and full a life as anyone.” The surprised response is “How can they teach so young a child to lipread?” and then you have to start to tell him how. A little this time, a little more the next time. A day comes when the salesgirl stops you and says “You know when Johnny came in yesterday to shop for you, I really understood what he said, he’s making wonderful progress, isn’t he?” And you know that the interest you borrowed has been repaid.

So, in exchange for your interest this afternoon, I’ve asked you to go out and both a borrower and a lender be - borrow people and loan your interest in the cause of deaf education. I’ve asked you to think of yourself as a receiver as well as a giver of language, and above all, to look at your child with fresh eyes, cleared of all the negative “He can nots”, ready to help him develop as quickly and as fully as possible in each different area of his very complex Self.

Joanne G. Schwartzberg


Jen Robinson said...

That's really neat, Jenny. Thanks for sharing it.

Ariel Zeitlin Cooke said...

This is incredibly moving and wonderful.