1. Käthe Rathke: Self Help Groups for Hard of Hearing

2. K. M. Ur-Rehman: Experiences of a Hard of Hearing Pastor

3. Uta Eckoldt: My Experience as a Hard of Hearing Mother

Käthe Rathke:
Self Help Groups for Hard of Hearing

My name is Käthe Rathke, I am member of the working circle for the working community of the hard of hearing self-help-groups in the German Hard of Hearing Association (DSB)

I have subdivided my lecture in three categories.

1. Self-Help in General

2. Self-Help and Impaired Hearing

3. Self-Help and Aftercare

I would like to begin by mentioning a longstanding experience that I have made together with hard of hearing and deafened people.

Life with an impaired sense of hearing could be by far easier and more sensible if families – church and society would accept this handicap, show more understanding and shake off prejudice.

The impaired sense of hearing is not the biggest problem of those people concerned; apathy, indifference and ignorance of the whole social environment is by far more serious.

What’s the use of experience in specific needs for a hard of hearing person if his environment is too impatient to listen to him, too lazy to let in for his level of communication.

1. Self-help in General

Self-help comes into being where people cope with difficult situations under their own steam. Forms of self-help can already be found in guilds in the Middle Ages. During the second part of the 19th century people realised self-help in associations and after World War II self-help groups have been founded. They represent interests of people who suffer from diseases and handicaps. Since the end of the 70s self-help groups do exist in Germany.

Their members help one another to cope with permanent demands of the daily life. Members of a self-help group suffer from a similar situation.

The aim of their joined work is:

? Coping with social, personal and disease determined strains

? Improving the personal situation of each member of the group

? Strengthening or extending social abilities

The method of self-help groups is to meet regularly- usually weekly – and to have equal conversation.

People working in self-help groups strengthen themselves by a trusty relationship to other members of the group. They strengthen their self-esteem and learn to improve their social relationships outside the group. Positive effects of self-help groups are described in many research and experience reports.

Members of self-help groups

? Suffer fewer from depressions and diseases caused by mental strain.

? Are independent and more self-confident

? Have better social contacts than other people in similar situations

People with chronical illnesses or handicapped people learn in self-help groups

? To accept their handicap and to live with it

? To try out a new quality of life

? To make use of professional aid and use it more specifically and critically

Members of a self-help group learn from each other and with each other. Therefore they need a foundation of trust. For this reason they oblige, not to pass on things, being discussed in the group, to outsider.

Everyone deals with his own difficulties and together with the others, by conversation within the group everybody helps everyone.

The most important thing of a self-help group from the very beginning is "conversation".

In a Group of hard of hearing people it is totally different!!

For those people it is a long way to the first mutual conversation where

Everybody understands Everyone!!

2. Self-Help and Impaired Hearing

A group of hard of hearing and deafened people firstly has to create conditions for a common basis of communication, coming up to all different degrees of impaired hearing. <Conversation> is natural working means for reaching objectives in self-help groups; n a group of hard of hearing people it is the objective as such.

That’s probably the reason why hard of hearing self-help groups do only exist in Germany since 1982, since the Rendsburger Rehabilitation for the hard of hearing was established. During 4 seminary weeks in Rendsburg, hard of hearing people realised that a self-help group for hard of hearing and deafened people is absolutely possible, if, at the beginning of the actual work, a communication system, by the means of visual aid, is built. "Total communication" how can this be reached.??

By interaction of existing communication aids like

? Watching

? Phonetic language – accompanying – signs (LBG)

? International finger alphabet

? Facial play

? Body language

In connection with good articulation and residual hearing eventually, equal means of communication for all participants and therefore direct spontaneous involvement in conversation as well as security in understanding can be obtained. For a hard of hearing person (not Rendsburger) there’s another hurdle to cope with. If he finally - after long hesitation - decided to visit a self-help group, he will be faced with a new problem. He feels double-handicapped.

He, the hard of hearing himself, has until now, always been understood by his well-hearing communication partners. Now during communication in the group he is handicapped in both directions.

Until now he wasn’t forced to control his way of speaking to be understood and now he has to make efforts to articulate well, so that he is at least roughly understood. Therefore he feels helpless, he gets annoyed, he becomes angry and even aggressive; he can’t cope with the situation. -- He shows the same symptoms as a well hearing person.--

The reflection of his own handicap in this moment is – God knows – no relief in the sense of "I am not alone with my problems", but rather a shock!!

It is possible that he is scared that much that he totally withdraws into his shell. To stop him and make him return will almost be impossible for a group under construction; it’s too much for the powers of persuasion and empathy of an amateurish group speaker.

>> In this case professional help of a pastor is necessary.<<

However, if he stays in the group he will soon realise that the experience, to see his own destiny in his fellow human beings, breaks off the limits of personal suffering inhibitions and prevents self-pity. The own life finds a response in fellow human beings and during conversation with them, reverberations that make up our human being, develop.

The advise given to hard of hearing and deafened people, to join a self-help group, is therefore more than a sign to contact and comfort of fellow sufferers.

The special way of sharing in a self-help group is therapy by activating and supporting one’s own power to be able to cope with the handicap.

By the informality of the self-help group, and by the group’s accepting every single person, an enormous therapeutic power develops. In a self-help group, talking and listening is very often more important than the contents of the words spoken. Not cleverness of the exchanged arguments decide about sense and use of a self-help group, but realisation of emotional skills like openness, consideration, confidence and love of the members to each other.

Every single person should be capable to accept, admit and openly express all things putting strain on him, and which are connected with his hearing handicap like for example fear, desperation and the question >why me, of all people<; he shouldn’t deny or suppress it.

"To Talk about it" in an informal atmosphere is the best way to prevent inner conflicts and self-pity. Self-pity clouds your view of the actual weight of the obstruction and of remaining power to overcome it.

Refusing to tackle with inner conflicts and modified realities, caused by the suddenly appeared hearing impairment, means to devote to past illusions and to try to hold on to lost things.

Hard of hearing people often show (mostly acquired) behaviour patterns like denying, camouflaging or hiding there handicap, what is quite easy as their handicap is invisible; but this counteracts the indisputable good success of self-help groups.

The always returning sense of community in the group teaches members very soon to accept their hearing impairment, to include it in their lives and to make it part of their life.

Communication, eased up by visual aids, strengthens confidence in the own therapeutic ability to help oneself.

They realise that common work

- strengthens self-confidence

- raises self-esteem

- improves the quality of life

- gives a feeling of solidarity

- improves the ability to communicate

- shows new ways of self-realisation and identity finding

If a group has reached this aim, it will either dissolve or concentrate on another concerted objectives.

- informing public relations.

- Make a list of request, explain and publish it

- Attend further training and hard of hearing appropriate seminars and organise them on the spot

- Contact other self-help groups etc.

3. Self-help and Aftercare

Help yourself, then God will help you!! That’s a very true word, but is it always right??

It’s just as easy to live with a impaired hearing.

A hard of hearing or deafened person just has to attend a self-help group and everything is fine again.

Unfortunately reality is rather different from that.

Often, too often and too soon a hard of hearing does- strengthened by the Rendsburger Rehabilitation self-help therapy for hard of hearing – is drawn back to the cruel reality of his handicap. What’s the use of self-confidence acquired in hard work, educational work and reasonable demands for more understanding

If.............

? The family refuses to use visual aids like >>gestures and facial play<< or to learn sign language

? His attempt to show public injustices and to remedy them is boycotted

? His request for adequate pastoral care of hard of hearing is smiled at and instead reduced

? Teacher at hard of hearing schools still rail against sign language, because if they accepted it they would have to learn it

? The reverend gives him a slip of paper with the sermon and, apart from that, goes on like usual. Still mumbles stands in the shadow and adverts

? Hard of hearing pastors think that in near future they will be superfluous because of the CI and forget - or don’t know ?- that even a successfully operated person is still a hard of hearing one

? He still has to feel excluded and pushed away

? Again and again he has to point out to his handicap and the specific communication needs combined with it.

? He, despite educational work, is degraded to a job of inferior quality, because he is no longer able to phone without amplifier

? No one really cares about the problems of hearing impaired people, because they need time am patience. And after all, time is money

If.... I could continue for hours but unfortunately I don’t have time, too.

If he comes across avoidable limits again and again, his self-confidence dwindles away like a beauty mask and he reverts to long forgotten behaviour patterns like denying, hiding and camouflaging his handicap to the outside, while his soul languishes pitifully in the inside.

To become strong, Ladies and Gentlemen, that’s what he could manage under his own steam. But to remain strong he needs help. Our help, help for self-help and Ladies and Gentlemen pastors, help for the soul, life-aid.

Help not in the sense of looking after, pampering, regretting or treating them like a child, no!

Help in the sense of encouraging, allowing, treating them equally, accepting not excluding.

To pick him up, reach out to him, inform the environment and the society together with the hard of hearing and the deafened, to keep rights and duties together, and to build up a world, coming up to the hard of hearing.

Life with a hearing impairment could be so satisfying,

if family – church and society

? accepted the handicapped person

? included him in their life

? made him part of their life

Thank you for listening. --- But don’t shut your ears right now. Thank you!

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My name is Karen Margrethe Ur-Rehman.

I am hard of hearing.

In my professional life I am a hard of hearing pastor.

In my private life I am a hard of hearing wife.

I am always and will aways be a hard of hearing person.

It looks like I have this one qualification to be a hard of hearing. If the sun shines I can choose to wear a pair of sun glasses or I can choose not to. If I want to improve my bad hearing I can choose to wear my hearing aid or I can choose not to. It is entirely up to me if I want to use these aids or not. If I do choose to use these aids it will help me. But I cannot choose that I tomorrow want to become a normal hearing person. It will not work out for me. Whether I like it or not I am hard of hearing tomorrow, today, this hour, the next minute and the next second. From that point of view it looks like I therefore might be qualified to say a few things about my subject:: To live as a Hard of Hearing - but how?

It is a tough question to answer in more than one way. It is a personal question. It involves my whole and every day life. It is like opening a window to my soul and give you, my audience access to my most vulnerable part: my hard of hearing soul.

Some of you I think are already looking at me with serious faces? Why is that? Have you already started to look through my window? Please, my friends, ease up and relaxe a little. May be I will tell you something amusing, too. If not today then some other time. I enjoy when we laugh together and at the same time I feel comforted when we are able to share our sorrows and our belief in Jesus Christ.

To live as a Hard of Hearing - but how?

Before I even try to answer that question I want you to keep in mind that my intention today is not to attack anybody, neither normal hearings or hard of hearings. My intention is to try to give a small contribution to what I see as an important issue every day in our lives: to live - but how? To live as a Hard of Hearing - but how?

I do not pretend to have all the answers. I do pretend however that I know how it is to be hard of hearing at least when it comes to myself, but as time go by I also have the feeling of somehow beeing lost as a hard of hearing. I feel more and more that I have difficulties in establishing my hard of hearing identity. Where do I belong and how do I live if my identity as a person is doubtfull to myself and as a result thereoff doubfull to others? But I can`t stop living and I can`t stop being hard of hearing.

One thing I know nothing about is how it is to have normal hearing. I never have been in that situation but with a smile I claim my right to pretend that I know and with an even bigger smile I declare, that normal hearing people know nothing about how it is to be hard of hearing. I know it is a provocative statement. That is why the smile is so important for both our groups.

We must be able to smile at our own foolishness, our mistakes in life - and the misunderstandings and errors that comes up when we try to communicate. Humoristic sense and self-irony is a gift from God, I think. I am not aware of if self-irony is something special for the Danes but I love it and it helps me to cope with my incomplete life. I can make fun out of almost everything also the most serious things. But sometimes I feel like the circus clown with his smiling face and sad heart.

Two years ago, IVVS held the conferrence in Denmark. I remember, that we the last day had a little debate about the above mentioned question, due to some problems that some of our members had had during attending the service.

As we all know, hard of hearing people have some basic needs that should be met in order to give us the optimal understanding of the spoken word.

Allow me to mention a few examples:

The whole idea of communication is that the speaker deliver his speech in such a way that the hard of hearing understands what the speaker is saying. In order to hear the gospel we as hard of hearings need some additional requirements to be met and for the people who work with hard of hearings it is necessary to know what these additional requirements are. All of us here know these things. So far so good.

But what about our own role as hard of hearings? Don´t we have to deal with that, too? I think very much so.

When I two years ago suggested, that it was important that we tried to investigate the whole question deeply, I admit, it was because I got hurt because some of my hard of hearing brothes and sisters got hurt. I admit, that I also got very excited and even angry because it looked like if there was little or no understanding of where this hurt came from and most important it looked like if it was not even legitimate to hurt in this particular situation but nobody has the right to decide if I have to hurt or when. This was and still is my statement. But I also know that there is more to it, that something is going wrong in this whole communication issue. But can it be helped?

My offer is that it can only be helped if you are willing to accept your role and what goes with it. Are you hard of hearing you cannot run away from the fact. Likewise a normal hearing person cannot put cotton in his ears and think, that now he knows everything about what it is to be hard of hearing.

The problem for many hard of hearings and late deafened is that there is a psychological side to our handicap. Whether we like or not there is a sadness, a pain that comes along. Sadness because we feel incomplete when it comes to social fellowship. Sadness because we feel normal but is considered abnormal. As already mentioned, I only know how it is to be hard of hearing. That is normal for me. But I often feel the irritation from other people because I am me. May be I do not feel anything special as long as I keep quiet when I feel deprive of the understanding from others but the moment I open my mouth I become different and the others become different. I have tried to analize what actually is going on. I think what frightens me - and the others - is that I -when I finally speak up - can get very angry. I am a true master of paving the way for other hard of hearings and to explain their problem in a nice and quiet way, but not when it comes to myself. I have also within the last few years noticed that I can be suspicious when others laugh. Are they laughing at me? I can explain to other hard of hearings that that is probably not the case, but knowing that, why do I then obviously forget all the good and right understanding of the things when I am personally involved?? I have noticed too, that I thought I knew how is was to be late deafened, but when I once experienced some similar situations I again reacted in a way which was shocking to me and I have begun to understand why sometimes hard of hearings and late deafened people get low self-esteem. We simply get scared of our own reactions., scared that we misjudge situations and scared to be left alone with our own fears. Then it is easier to keep quiet. But a normal hard of hearing or late deafened person who is still trying to live a normal life together with other normal hearing people can only be quiet for some time because all of a sudden you are in one of these idiotic situations where there is no understanding of your situation and before you even know it the cork leaves the "shampagne bottle". It is like your tolerance become smaller and smaller.

Now look me into my eyes and answer me honestly: Would you not be frightened in that situation. Would you not feel the hopelesness creeping into your system like a snake round your body? I do. I cannot help it and do not think it will get better but worse. I of course intend to fight it - but how? It is really possible that any normal hearing person can understand what is going on with me - not only with his mind but with his heart - when I react like a tornado? Is it really possible that any normal hearing person can accept that I get hurt if the communication system brakes down? How can you understand that I react like was it the day of judgement or like the day my best friend was killed? I do not understand how that is possible for you, my normal hearing friend, but may be you have more courage to accept your role than I have to accept mine. But I still think I am normal. Are you? To me it depends on which side of the table you are sitting. Are you sitting on my side, I will consider you normal - even if you have normal hearing but are you sitting on the other side and trying to be clever on my behalf I think that you have a big problem which effect my life deeply.

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Uta Eckoldt:
My Experience as a Hard of Hearing Mother

My name is Uta Eckoldt, I am 32 years old, married and mother of two little sons. My elder son, Sebastian is 3 ½ years and my youngest, Lorenz, is 3 month old. At the moment I am on maternity leave, before that I used to work as a radiology assistant.

My husband is a self-employed civil engineer for ten years now. He runs a statistics office in a small village near Erfurt, in which we l live, work, quarrel and love today. We love to live on the countryside, enjoy the few hours in our small garden and are happy that our children have enough freedom to play games and to make friends. Meanwhile even a mother cat and her little kitten belong to us.

When I go for a walk with my boys, people turn round and smile. My boys have red glowing hair and my 3-year-old-son Sebastian has a strong voice. And this voice never fails. I remember exactly Sebastian’s first day of life on the maternity ward when the doctor said to me: "Ms. Eckoldt, God gave your son a voice that even you can hear".

It’s still the same and so we attract attention wherever we are. Yesterday I went to the ENT specialist with him. My suspicion was right. Shout nodules on the vocal chord. "In this case only language hygiene will help", the doctor said, "He has to speak slowly and softly".

This can’t work, I often think, the reason, why he speaks more loudly and more clearly than any other child of his age is, that he wants us to understand him.

My little son Lorenz (1 year old) appears to me as the moderate and more congenial version of his brother.

Although I do sometimes complain about my wild sons, about the untidy condition of our apartment and the head of our family who’s always absent, I am nevertheless deep down happy and satisfied and I am grateful to God that I was allowed to experience this motherhood, in the end.

The way was long with painful experiences.

When I was 27 I became pregnant for the first time. The long awaited child had announced! After the 4^th week I already knew that I bore a child in me. Two wonderful month followed.

But in the 14^th week my little baby’s heart just stopped beating. I had to learn that medicine could be cruel. I had to accept that my child, - my hope, my future, my dream- was just an abort, an embryo, just a simple thing.

I’ll never forget the moment, when the doctor – also hard of hearing – turned to the window and told everything to the street. My husband and me in anxiety and then a doctor turning his back on us, incapable to offer his sympathies.

This nightmare went on in the catholic (!) hospital. I was treated as if I had had my 3^rd or my 4^th abortion. Pastoral care consisted of a 5 minutes devotion on loudspeaker in the evenings what I couldn’t understand anyway. In this short week there was no one who offered a friendly word. Maybe I didn’t want to hear one.

Those endless nights in hospital are all-pervasive for me and I can’t get rid of them. Even not the grieving for my child that wasn’t allowed to live. How often might I have asked God why he had to take my child, too? When I was 12 years old I lost my sense of hearing. My childhood didn’t take a normal course, it was unsettled and stonier as those of other children of my age. Between the first man I felt attracted to and me there was an invincible border of East and West. Why another punishment? What did my child have to do with it?

In God I didn’t find comfort, no moral stability. I sought for a place for my sorrow, for my rage, my inner void, I just yearned for a tiny little grave. Nothing. There was nothing at all.

Within a period of time I just didn’t seem to succeed in anything. I couldn’t understand why my husband could work and live almost normally. I didn’t forgive him for a long time.

And suddenly a chance to work as radiology assistant arose. I took this chance and met new friendly colleagues, competent doctors as chiefs and I started to enjoy the job I had learned initially and which I hadn’t carried out so far. Then I sustained my 3^rd acute hearing loss - after having worked in my new job for a fortnight. Now I was totally deaf on the left side and on the right side there was a rest of 15 % hearing.

ENT specialists advised me: "Take care of your residual hearing, no cigarettes, no alcohol, no extreme stress and above all no pregnancy. Your sense of hearing won’t cope with this hormonal change.

But I wasn’t really interested in what he said. I smoked, drank my beloved red vine and 6 weeks after I had started my new job I had to explain to my poor chief: "I am expecting a baby".

The first weeks of my pregnancy were like hot and cold baths. The fear of rejoicing too soon alternated with new hope. I had a happy gynaecologist accompanying me anywhere and nice colleagues supporting me anytime and anywhere.

I was even capable to attend church again. When I was pregnant in the 8^th month I went for a walk in the little village we had moved to. The church was open and I went in. No one was there and so I could be alone with God. There was a board and a pencil: "Today I pray for...".

I prayed for my child, I prayed that this time it was destined to live. And I prayed for a child that hadn’t been allowed to live, that still is a part of my inner sorrow, because every child is unique and my sons don’t replace the first one.

Then the reverend arrived. He talked to me and after quite a long time I felt that this time I was understood by a representative of church. We had no important conversation, it was just a feeling and it was there. Suddenly it seemed very important to me to entrust my child to God. I agreed a date for baptism with the reverend – it was the St. John’s day of the following year.

I arranged everything for Sebastian’s arrival. I got my husband on his nerves until the pram stood there in the 7^th month of pregnancy. All rompers, vests and nappies were cleaned. Vast amounts of literature about pregnancy, delivery and baby care drove my husband up the wall.

Only one thing was missing a babyfon and I wanted everything to be ready, because when the baby would see light of day, I wouldn’t want to see to annoying things like that. So I went to the health assurance scheme to ask for such a device. But I was hit right in the face. A young, pretty, very neat clerk only said: "First of all, we have to wait and see if this will be a live birth. In case it is, you return and then everything will go quickly. You have to understand, that we can’t take the system back. NO! I did not understand. I didn’t understand anything at all in that very moment. I just wanted to go out and let it all out.

The clerk certainly had her instructions and I am sure she hadn’t lost a baby yet. But did she have to emphasise it that much? This thoughtless sentence dug up all my anxiety for weeks.

Sebastian’s birth was a long tough fight against nature. Maybe I was afraid to lose him in the end – I am not sure. I only remember that he was deep blue when I could see him for the first time. The midwife immediately left the room with him, although she wanted to put him on my tummy. I felt the same as I did when I lost my first child, because I couldn’t hear him shouting, he also didn’t say hello to life.

Even my husband didn’t understand my attack of panic, he didn’t know that I couldn’t hear him, because everything was okay now, Sebastian had already shouted for a long time – only I couldn’t hear him.

When I held him in my arms, everything normalised. My sense of hearing recovered soon. I can’t remember that I felt the slightest worry about my sense of hearing getting worse – like during the whole time of pregnancy.

Sebastian became a happy and friendly baby. During the day I had to fight against all difficulties a well-hearing mother has to. The first time with the baby was exciting and exhausting. The nights turned out to be by far more difficult.

Innumerable times I sneaked into the children’s room and checked the babyfon. If he slept longer than usual (I breastfed him if necessary) I stood next to him always prepared for a case of emergency. Three of four times I woke him up, worried to death that he wouldn’t breath any more.

After 3 month I was really fed up with this situation. I took him in my bed. I didn’t care what mothers or mothers-in-law might say.

From now on the nights were calmer and Sebastian’s hand could tell me if anything was missing. Even today I sleep with a hearing device if one of the children is ill.

Something inside of me doesn’t dare technical safety. I do always expect a kind power failure or something like that.

After all I think that Sebastian’s difficulty in sleeping were partly caused by the babyfon. When the system flashed I went to my child and tried to calm it down.

Torn out of deep sleep, without hearing device unable to hear whether he was just grumbling in sleep or whether he really cried, I gave him his dummy and raised a real dummy-child. He didn’t get a chance of calming down himself.

Later on, the playground turned out to be a real problem. I was unable to talk to other mothers while the children were shouting. As Sebastian was a very sociable child I went there for love of him. And in some way friendships crystallised. The children’s liking were transmitted to us. In a small circle, however, I am able to talk with other mothers and understand their worries and their experiences.

In comparison with the first, my second pregnancy took a normal course. Sebastian was some 2 ½ year when my second planned child announced.

There was no time for worries and problems like in my first pregnancy. Sebastian raced along the day quickly and I was challenged by household, working in the garden and bookkeeping in my husband’s office.

The second pregnancy pointed the way to the future and I somehow felt as if it was my personal pregnancy, different from the first one which I saw as our pregnancy and I defended this feeling grimly.

Again I ignored my own sense of hearing and avoided all ENT specialists and again everything turned out all right.

When I was told in the 20^th week that the child would be a boy, slight disappointment changed in the realisation that otosclerosis is more often passed on to girls and that boys have much better chances of getting a good sense of hearing.

Organisational problems predominated the psychological ones. Where will Sebastian stay during the delivery, will he be very jealous? There was only the problem of the night. Coloured flashing light. Red for Sebastian and green for the baby? That would hardly be possible. How should I hear, which of the children actually needed me.

The first nights were planned in long term. Fortunately Sebastian inherited a high-up bed which he found so interesting that moved out of my bed, at least temporarily. I tried to make him find his parents’ bed in the night on his own. That worked quite well.

From the very beginning Sebastian could see my pregnancy happen. In the evenings his legs were aching like mine and he suffered from back pains. He had to eat as much fruit as me and when we took a bath together he saw my tummy growing.

Lorenz’s delivery was like the whole pregnancy: fast and uncomplicated. I could hear him crying immediately and I could say hello to him like I had always wanted to.

Sebastian had a close look at him full of curiosity and effusiveness. And from the very beginning the baby was "his Lorenz" and still is.

The nights at home brought a surprise: Months and months of planning turned out to be superfluous.

Lorenz slept in his little basket and Sebastian slept in my bed. And Sebastian worked better than any babyfon. I could rely on him. He always woke me up when the baby cried, at least in the beginning. After 3 months Sebastian slept through and remained unimpressed by the night-time crying. He wasn’t even bothered by the light of the flashing alarm clock.

My husband and me become really aggressive when that device starts and the flashing of the light doesn’t stop. Once in a while I would like to know what all the inhabitants of our village think when our house is flashing and shining and then sinks in darkness again.

When Lorenz was 3 months old and became hungry every two hours a night, I missed the flashing light for a few times. My husband bought a shaking alarm clock for me. I was rudely awakened right in deep sleep. "Get out the children" was the only thing I could think. I was seized with panic. I never used it again.

In the meantime nights have become more silent. When the baby is fit, he sleeps through. Our eldest son gets to us on his own when he is afraid in the night.

Last fall we celebrated Lorenz’s baptism. It was like I had always wanted it to happen: With the members of the self-help-group ECHO and our family. Pastor Elisabeth Becker arranged the celebration with loving care and I think this celebration for a tiny human being forged links between many adult hard of hearing without own family and our own families which have only few insight in the world of the hard of hearing.

In the meantime Lorenz celebrated his 1^st birthday and takes his first steps and sticks to my trouser leg all day long.

I find the morning hours particularly hard. Both boys are really not morning persons and they hate to put on their clothes. When my coffee isn’t ready yet and one boy only grumbles and the other whines it can happen that I switch off my hearing aid, because our day begins early: At 5-5:30 we start.

Next hurdle: My morning shower. As I am almost deaf without hearing aid I can’t answer Sebastian’s never-ending questions; I can’t hear whether our youngest has fallen down again and needs comfort. Before I get showered I have run in the living-room 5 times and switch on the hearing aid 3 times - I am really happy when the water is rushing after all.

My sons love each other very much – actually from the first day on. If this lasts, the friendship between them will become a real friendship. From time to time I am a bit worried because they will stick together, whisper. They can whisper well, because both can hear well, immediately after delivery I had it checked.

If they play in the children’s room and they quarrel, I can’t make out whether it is in a happy or in an annoying way. So I go and see and very often get involved too early.

When I push the pram and my eldest helps - as otherwise I can’t manage it he says – I often notice that Sebastian walks on the street’s side, because I can only hear on the right side. And as my son is always talking he walks there of his own accord. When I become aware of that fact I send him to the other side, but after a short time only, he is where he always is; on the right side. He also tells me when "an idiot speeds along the street too fast" – most streets of our village are narrow and speed freaks are quite carefree. Fortunately Sebastian is very afraid of motor bikes and cars and therefore very careful.

When he was about 1 year old, my eldest son noticed that his parents wore hearing aids. And as my husband and me are extreme hard of hearing nothing works without. Sebastian, who always has to examine everything, didn’t take care of it. We didn’t even tell him not to touch it. When he was 1 ½ years old he held it direct under the nose of each parent during the daily waking ceremony.

When I recently asked him why he never listens to me when I talk to him I got the amazing answer of out 3-year-old son: "Didn’t have battery for my hearing aid." Now I know it.

Lorenz is just about to find out about hearing aids. He has already noticed that it is something very special.

On the whole I think that problems and worries and also joy of a hard of hearing mother are almost the same than those of a good hearing one. It’s just strenuous never being able to finish a meal. It’s just nerve-wracking when the eldest explains to you in the supermarket: I just disappear for a short moment" and I can’t follow him because the youngest hangs in the trolley and only wants to go home. Sebastian has it at his fingertips. Once he gave a comforting nod to me and said: Will be back soon!". I sometimes think that this is the reason for his red hair. As I am not able to hear him, I am at least able to see him from a distance.

It’s as funny as annoying when my eldest asks at 22:00: "Mum are you still my friend?" and replies relieved to my careful "yes": "Then I’ll go to bed quietly so that I don’t wake up Lorenz."

It’s very instructive to know, that children don’t wear blue trousers and red shirts any more. Trousers are cool and shirts are snazzy. You’ll be sorry if you mix it up.

I find it most strenuous when my eldest has defiant attacks - sometimes throws himself down on the street and screams endlessly if he can’t have his way.

As my sons know difficulty in hearing from the very beginning I think they don’t have that much problems with it. Sebastian once asked his friend: "Where does your mum have her hearing aid?"

For him it’s only difficult to repeat things because patience is no virtue of a child at the age of 3. Sometimes bricks were thrown through the children’s room when I couldn’t understand him at all. Apart from that he can’t understand the problem of inductive hearing, neither on the telephone nor during watching TV. In time he will understand and my husband will explain the necessary details to him. His constant babbling during drive is incomprehensible for me. Meanwhile I could make him not expect any answers and I am pleased that I only have to put up with his flow of words.

I somehow feel that our married partnership has to suffer by far more from difficulty in hearing than a parent-child-relationship.

My husband lost his sense of hearing during his studies, I lost it when I was 12 years old. Our environment doesn’t become aware of our handicap through our colloquial language. We simply forget our difficulty in hearing and wonder if others don’t show the reaction expected.

As we are always tired, none of us is patient enough to repeat things and the very next moment we quarrel, for what we always have spare energy. Permanent existence stress, years of overwork of the father, lopsided, nerve-wracking burden by 2 toddlers and household of the mother, permanently juggling with the house-keeping-money, are no good conditions for a harmonic partnership – problems that many families know. In addition, there is the difficulty in hearing.

As everything is agreed in hurry lots of misunderstandings creep in, which remain unexplained. In this case a hearing handicap has more negative effects than in a parent-child-relationship.

Difficulty in hearing become very problematic when we are in crowds. Different kinds of noise make my husband so nervous that he immediately passes it on to our children.

It doesn’t bother me that much but we can’t enjoy big festivals so much. In our circle of friends we have the same problem. I realised that for all parents with young children it is hardly impossible to have a coherent conversation. I think we just have to wait until our children are older and more independent.

The most beautiful picture for me is this: my husband builds a turret of wooden bricks, taller than himself and the youngest is allowed to knock it down. All three love this game and I don’t interfere.

Despite all mad rush, innumerable appointments, piles of clothes to be ironed, weeds growing inexplicably fast – we sometimes take a nice hour off and go for a walk, and people turn round smilingly:

A dark-haired mother and three glowing redheads – my three men.

In these hours I have the good feeling – the four of us are a family and we belong together.