Parents of Deaf Afghan Children -- On The Air

M. Miles,
 

THE DEAF AFGHAN CHILD ‑ I.

Counsellor:  In the past few weeks we have talked about children and young people with different disabilities. First we looked at the fingers on our hand, and saw that one of them is smaller and weaker than all the others. We do not disregard that one simply because it is small and weak. In the same way, one child out of ten, on average, has some kind of disability, and needs some extra help from its family and the local community. We heard from the parents of one such child who is mentally weaker. They were given advice on how to help their child at home. Those parents will be back in a week or two, to report how they have got along with teaching their child.

We heard from a village Malik about the problem of epileptic fits in his village, and what has been done about it. Then the story was told of a little girl whose leg was paralysed as a result of polio. Her family worked together to give her massage and treatment at home, and that little girl overcame her disability. In the past two weeks we heard from a blind young man, whose family enabled him to find his way around and learn useful skills.

This week we look at ways to help the child who cannot hear properly. Most of the advice about other disabilities applies also to the problem of deafness. Whatever the disability, children need a lot of love and encouragement so that they will not feel unhappy and lonely. They should join in the usual, everyday activities as far as they can, and be treated as normally as possible. This is certainly true of deaf children. They learn a lot through seeing, since the ears are not working properly. The more the deaf child sees of ordinary, everyday behaviour, the more he or she will understand and copy it. So it is best for such children to be fully involved in every part of ordinary life.

Let's talk with Jehanzeb Khan, the father of a deaf child. Jehanzeb Khan, when did you find out that your daughter had a hearing problem?

Jehanzeb Khan:   Bilkees was quite small, about four years old, when we took her to the doctor. For several months my mother had thought there was something wrong, but my wife didn't find any problem. Bilkees was our first child, and we didn't have so much experience to compare her with. When she was a baby she made the sort of squeals and babbling noise that babies usually make, so we never imagined anything was wrong. Later she became very quiet, and didn't start to talk at the time you would expect. Then my wife began to wonder if Bilkees was mentally weak. But she always looked very alert. From very early, Bilkees would follow with her eyes whatever was happening, so I did not think she could be mentally weak.

My wife said, "When Bilkees is ready to talk, she will talk." But my mother got worried, and urged us to see the doctor. Finally, Bilkees got a very bad cold which never seemed to clear up. There was a little pus coming from one ear, and Bilkees kept rubbing it. So we went to the doctor and reported the problem. The doctor did some tests, in which we took part. They were so simple, we could have done them by ourselves if we had thought of it.

The doctor told us what to do:  Bilkees sat on my wife's lap, while I stood in front, showing her a toy. I was closely watching her eyes while she looked at the toy and reached out to touch it. The doctor stood to one side behind Bilkees and her mother, and rang a little bell. I was watching Bilkees, and her eyes did not move from the toy, even though the bell tinkled just behind her. It was as simple as that. From that moment I knew she was deaf.

The doctor tried a few other sounds, like rattling small stones in a plastic cup, and crushing up a newspaper, behind Bilkees' right ear and then her left ear. One time Bilkees did look round, but that was my fault. I looked away from her to where the doctor was standing -- that gave Bilkees the clue that something was happening behind her, so she looked round. But she had heard nothing.

Cllr:  You've given a very clear description! It's really good that you watched your daughter so carefully. That's one of the most important things that all families with disabled children should do: to watch closely and see what the child actually can do or cannot do. What was the next step?

J.K.:  Well, the doctor said that there were several things that might be wrong, and we must treat them one by one. First she gave some medicine for Bilkees, to clear up her cold and the pus in her ear. This medicine was effective after a few days. The doctor told us to come back after the cold had gone. She also gave us a tiny bottle of olive oil, and asked us to warm it a little and put two drops of oil in each ear, a day or two before we brought Bilkees back. Then when we saw her again, the doctor cleaned out both the child's ears very gently. Then she went through the same hearing tests again. Bilkees sat on her mother's lap while I stood in front keeping her attention with a toy and watching her eyes. This time there was a different reaction from Bilkees. She could hear some of the sounds at one ear, but nothing with the other ear. So we asked the doctor what did all of this mean.

She said there are two different sorts of deafness, and explained it in a complicated way and we couldn't understand a word of it. I asked her straight out: Is Bilkees deaf, or is she not deaf? So then she said that one ear is completely deaf, and always has been deaf. The other ear is partly working, but it stopped working due to the cold and infection and blockage with wax. After we cleared up the infection with medicine and the ear wax was loosened with warm oil and then cleaned, that ear began working again, but only working a little bit.

Cllr:  This is true of most deaf children. Even if a lot of their hearing ability is lost, usually some part remains. Even that part can be lost temporarily due to an infection or dirt or wax in the ear. Whatever hearing remains, it is important to make use of it as far as possible. If one ear is working, make sure that you talk into that ear. Make sure that any colds or infections are treated quickly, and the ears are kept clean. But be careful not to poke anything sharp into them!

It was fortunate that Bilkees' mother and grandmother took action when they thought there might be some problem. The sooner it is found, the better. All parents should check their children's hearing if they have any doubt at all that there might be a problem. Families often think their child's hearing is okay simply because the child reacts to a loud noise. But such children may be unable to hear quiet sounds or high pitched sounds. The result is that they miss a lot of ordinary spoken language, whether at home or at school.

Mr. Jehanzeb, you were very observant when the doctor was testing Bilkees. You noticed something that often misleads families. It looked once as though Bilkees had heard the sound made by the doctor behind her back, but you realised that she looked round only because she saw you looking away at the doctor. Deaf children are often very sharp eyed. They have to rely on their eyes to tell them what is going on.

J.K.:  Yes, we noticed that, since Bilkees was a baby. The other thing the doctor advised us was to talk a great deal to Bilkees, and to use signs with our hands at the same time.

Cllr:  That's important. We now know that deaf or partly hearing children need to learn to communicate in every way possible. This is a big topic, which needs plenty of time for discussion. Let's cover it more fully in next week's talk.

DEAF AFGHAN CHILD - II.  (SPEECH DEVELOPMENT)

Counsellor:  Last week we talked with Jehanzeb Khan about his daughter Bilkees who is deaf. Jehanzeb is here again today. He says he has been advised to talk a lot with Bilkees. This is good advice to all parents with disabled children, whatever their problem.

Jehanzeb Khan:  Respected Counsellor, it's not easy to talk with a child when you know she is deaf! If Bilkees is not looking towards me, she doesn't know I'm speaking to her. I have to attract her attention by tapping her arm. Even when she can see that I'm speaking, she doesn't seem to respond or to understand. Sometimes I ask myself whether it's worth speaking.

Cllr:  It isn't easy. Think of yourself in the situation of Bilkees. There are times when you cannot hear properly, like when you are seated at the back of a meeting and someone is speaking quietly at the front.

J.K.:  In that case I'd move nearer, or ask the man to speak more loudly. And I'd cup a hand behind my ear.

Cllr:  Yes, these are good ways to hear more easily. In the case of Bilkees, you first attract her attention. Then it's helpful if you are near her and speak in a clear voice. It's best not to shout. Speak clearly, a little louder than usual, at the normal speed. Always let Bilkees see your face, with the light towards you. If you're sitting in the shade, or the light is behind your head, she will see very little even though you may be facing her.

J.K.:  But what will she see anyway? It's not possible to see words coming out of the mouth!

Cllr:  Bilkees sees more than you think! Let's take another example. Suppose I speak to you from a distance in a foreign language. You hear some words faintly, but you don't know their meaning. That's the situation in which Bilkees normally finds herself. If I say to you in the foreign language, "Jehanzeb, please take the book from the table and give it to that man", you would understand nothing. But suppose that while I say the words, my hands and eyes point to the book and the man. I say  "Jehanzeb" (looking straight at you, then smiling), "please take the book" (showing with my hands the shape of an open book), "from the table" (my eyes gaze at the book on the table) "and give it" (my hand makes the motion of giving) "to that man" (I point towards the man). In that case your eyes would tell you more than your ears.

J.K.:  That's true! I understand the picture you have given. But I have one question: if Bilkees sees all the signs and movements and can learn to understand them, why should we speak at all? We'll talk to her by making signs with our hands.

Cllr:  That's what has been done by many thousands of families with a deaf member, and they have had some success with it. But it's not a complete answer. On the other hand, there are some deaf people who have learned to speak so that they are understood fairly easily, without using any signs at all. But there are not many who succeed so well. Between these two methods, it seems best to use signs with the hands at the same time as spoken words, to help deaf children learn to understand and to speak.

J.K.:  Respected Counsellor, we'll do whatever is best. But is it true that deaf people can learn to speak? We always call them "deaf and dumb".  Maybe some surgical operation is needed? Before we learnt that Bilkees is deaf, our only worry was that she didn't speak. We were told that we should cut the flesh under her tongue, so as to enable her to speak.

Cllr:  No such thing is required! In fact, it's a harmful and dangerous practice to do any such operation. Bilkees has a perfectly good tongue, lips and throat to speak with. It was good that you didn't allow any cutting! That could have caused serious damage.

J.K.:  But if that's so, why does she not speak? How will she learn?

Cllr:  It's like this. All babies make cries and babbling sounds when they're very small. If their ears work properly, they can hear their own cries and this encourages them to make more sounds. Also their mother talks to them and the baby tries to say the same words as the mother. But when the ears don't work, the baby can't hear its own babbling, nor can it hear mother's voice. So after some time, it stops babbling.

J.K.:  That happened with Bilkees. She made cries when she was very small, but later she fell silent.

Cllr:  So you saw that there was nothing wrong with her tongue and voice. To encourage her to use them, you and your wife may act as follows: sit Bilkees right in front of you and make her look into your face. Say some short, simple words or sounds and let her see how your lips move. Baah! Bee! Boh! Booo! Let her put her hand to your throat and feel the vibration made by your voice. Let her try to make the same movements and produce some sounds. Praise her as soon as she makes an effort. She should also see her own face in a mirror when she makes the sounds. Let her see the different shapes of the mouth, and how the air comes out.

To join the sound of the word with the meaning of the word, you may use signs or show actions. For example, you can point to a bed, a mat, an arm, a leg, as you say the name of each thing. Tell another child to come, to go, to pick up, to sit, so that Bilkees understands the meaning of each word. You need to think carefully, so as not to confuse her. If you are waving your hands about, she can't concentrate on your face. Decide on one sign with your hands to indicate one thing or action. Everyone in the family should use the same sign.

J.K.:  It sounds quite difficult! We have to speak to her and also make signs, and also help her to imitate what we are doing so that she learns to speak and understand. How long will this take?

Cllr:  Certainly it isn't easy. You and the family will have hard work for several years. But if you don't make the effort, you will have a daughter who can never understand you, nor speak to you. Just take it step by step. Set yourself simple targets each month. Take 20 words that are important for the child to learn. For example: her name, the names of all the family, words like "come", "go", "eat", "sleep", "good", "bad", "toilet", "dress". Teach her some of these words in one month. Next month, try some more words. Go on step by step, always giving praise for every effort she makes. Remember this: she is not stupid, and she is not dumb. She's deaf, but not completely deaf.

J.K.:  And she is the child God gave us! Only one last question, please. Should we try to get a hearing aid? It's said that they are very expensive, but if it will cure my child I will find the money somehow.

Cllr:  A hearing aid will not cure deafness, but it might bring some benefit. Before buying a hearing aid, Bilkees needs to have her hearing tested on a machine called an audiometer. Bilkees will need specially shaped ear‑pieces to fit into her ears, and they will need to be changed every few months as she grows bigger. If these can't be obtained, the hearing aid will be no use. Find out also what sort of batteries the hearing aid uses, and whether there's a supply available in your village. There are also some hearing aid batteries now that are recharged by sun power. Do not buy a hearing aid from a shopkeeper unless he has been trained to supply the correct type of aid and also to adjust and repair the aid if it stops working.

And at the end, if all these things are available, it's still true that you need to make every effort to help Bilkees by speaking to her, listening to her, treating her as normally as possible and giving her as much love as you give any of your children.

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Explanatory Note

In 1984, while working in Peshawar, Pakistan, an opportunity arose to write some short scripts about childhood disability, as part of a long-running radio series on health issues, addressed to people in rural areas of nearby Afghanistan. Christine Miles and some local teachers were running a day school for children with learning difficulties. Over six years they had listened and talked with many Pashtun families, whose cultures are similar to those of Eastern Afghanistan. So I cast the scripts mostly in the form of interviews between a counsellor and some parents of children with various disabilities, from a typical village. Two scripts also had a blind young man being interviewed about his experiences of growing up, and learning skills to earn his living. All twelve scripts were originally translated into Pushto by a capable local man, and broadcast to Afghanistan.

In 1986, the English scripts were printed, with aid from NOVIB (Netherlands Organization for Development Cooperation) and distributed with assistance of the ILSMH (International League of Societies for people with Mental Handicap). Various people adapted and translated them to further languages. The blind young man scripts were revised and put on the web at: www.independentliving.org/docs3/milesm1988a.html Two more scripts went on the web in 2001 and 2002 at www.disabilityworld.org. I have never considered them very brilliant, either as radio scripts or as parent counselling. In fact, it was quite worrying to imagine what families might do with their child on the basis of brief, half-remembered, general advice! But we knew that families usually had very little information, and were very keen to know how best to help their child in a practical way; yet they were often given misleading or harmful advice. It seemed better to try to build up parents' confidence, encouraging them to do what any well-informed parent can do at home, i.e. observe the child closely, respond positively to her, build on what she can do, take it in small steps, praise the child's efforts, involve her in normal activities, help her to build a world of meaning. We circulated the scripts to encourage other development workers to make more use of the low-cost, wide-reaching medium of radio, making their own improvements and testing their own material in appropriate ways for different cultures.

During twenty years, ways of talking about disability and deafness have changed in Europe. The two scripts have also been updated a little, yet not so much as to remove them from the realities of rural Asia. These were Muslim families, who saw childhood deafness as a medical problem given by God; yet it was possible that God would also provide a solution if they looked for one. It was our job to build on that in a practical way, using a few minutes of radio time to reinforce the positive actions they had already taken, and suggest some further things they could try, and one or two actions to avoid.

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