My inner child

When I am feeling extremely anxious and tense, I know my inner child wants to be heard. If I schould describe my inner child, it looks like on the picture above.

This picture was taken shortly before my time in Kindergarten ended, I was six years old. I remember this pinafore dress very vividly, it was made from denim and had embroidered flowers on it. The photographer wanted me to laugh in the camera, but I just couldn’t do it. I had gotten my hearing aid shortly before, my world was upside down.

My grandmother said: “The hearing aid must be hidden!” And so it was always hidden behind my hair. Dear inner child, forty years later you will have a fancy, small in-ear hearing aid and a short hair cut. And you will not care if other people notice your hearing aid or not. You even will speak openly about your hearing loss when meeting someone new, to avoid misunderstandings. You will not be ashamed any more.

I had just recovered from a traumatic hospital stay, resulting in a adenoidectomy. The following tests, which confirmed my hearing loss, and the process of adjusting my hearing aid left me frightened and full of unsecurity. Dear inner child, it is not your fault you cried from fear so often. The grown-ups didn’t handle things very child-oriented. Later, when you are an adult yourself, you will be able to stand up for yourself, this will make everything easier to bear.

Lots of new and strange things had to be processed. I don’t like the hearing aid, everything is so loud. Why does my mother make me put it on every morning? Why do I have to go to this man once a week, who makes me hum like a bee and speak and repeat random words? Dear inner child, you will get used to the hearing aid and understand how it can help you. You will be grateful that your mother fumbled this strange thing into you ear every morning. In hindsight, you will be thankful for the hours spent in logotherapy – it will be your choice if let other people in on your hearing loss, your spelling won’t give you away.

Meanwhile, the grown-ups tried to keep their worries and conversations concerning my future hidden from me. Of course this didn’t work, I felt that something was going on… and that it was about me. Dear inner child, your parents and grandmother are at a loss right now – they don’t now how to help you, because they don’t know anything about hearing loss in children. They will do their best, but they will also make mistakes. You will have to find you own way.

I was very aware of the fact, that I was different. I didn’t want to be different, I just wanted to belong to the other children. Dear inner child, you will have to come to terms with the fact you are not like most people. Some doors will stay closed because of this, others will open. The pain will never go away completely, and some people will hurt you. And there will be other people, who will help you.

I was very anxious at this time, and I regressed. I wanted to sleep with my parents at night again. My mother had to be where I could see her. I was extremely shy around other people and refused to greet people I saw for the first time. Dear inner child, sadly I don’t exist yet. Nobody will stand up for you like I will. But this is in the future. But I am here now, and you can come to me everytime and tell me what is wrong. I am your future self, I wouldn’t exist if it weren’t for you. And I want to tell you this:

• it is okay to feel bad or anxious. Every human goes through this, you are not alone.
• even grown-ups are at a loss sometimes. You can believe me, I am grown up.
• YOU DID VERY WELL! You worked so hard, and this made my life so much easier.

And when you feel tense, overwhelmed and don’t know what to do – you can vent to me, I know you like noone else does. As all adults do, I may not always have a solution at hand, but we two are am experienced team and go through this.

Yours

0 and 40: Talk to me

First: I am very aware of the fact that talking to somebody with impaired hearing is very tricky for those with normal hearing. This kind of disability is difficult to notice.

When I meet sombody under “controlled conditions”, I mention my hearing aid right after we have been introduced. Unfortunately, this important detail is forgotten rather quickly and needs many reminders.

 

Fact #1: When I am in a loud enviroment with background noise and people talking (e.g. when I am sitting in a bus: droning of the engine, a group of students is talking), I may not be aware that I am adressed. In this cachophony of sounds, it is difficult for me to recognise speech. It may even not react to my name – it just doesn’t reach my mind.
Best solution: Make eye contact and signal that it is me you want to talk to. Stand where I can easily see you, I read lips to support my hearing.
Second best solution: A light touch. This will also alert me to you. Second best because I startle easily. I know that there a many things I don’t notice. Being touched means, something (maybe something dangerous) is very near.

Fact #2: When I keep saying “I didn’t understand that”, I refer to the clearness, not the volume level of speech.
Best solution: Try to speak more clearly. Sometimes it’s the little things, e.g. a full beard that keeps me from reading lips.
DO.NOT.YELL! Like any other person, I do not enjoy to be yelled at. And if the problem is in the clearness of your speech, speaking louder won’t help.

Fact #3: My intelligence has not been impacted by my poor hearing. Using “simple” ore “baby language” insults me and is uncalled for.
Best solution: Speak as normal as possible.
Second best solution: If talking is too difficult, we have to keep trying (go to quieter room, write…)

Fact #4: Verbal communication is very exhausting for me. I may be used to it, I may be able to compensate a lot, but at some point I am at the end of my rope.
Best solution: Accept if I don’t stay at a party until morning. Accept when I prefer texting or writing an email to talking on the phone, because it is easier. Accept that I need lots of quiet time to recharge in which I don’t want to talk and listen.

Fact #5: It’s ok to have a laugh about misunderstandings! I don’t mind, in fact, I’ll be the first to find it funny!
Best solution: Laugh, they say it’s healthy 🙂

And if I am hanging off your every word, it is because I read your lips. You have my undivided attention. Some teachers in school thought I was making fun of them, but I am just very thankful for every word I understand.

Participating in the world of normal hearing people is very hard for somebody who has limited or no sense of hearing. A setting without background noises, with lots of light to make lip reading easier, may not be romantic, but it helps communication. A little thoughtfulness is all I ask for, it helps so much.

 

 

 

Waiting room musings, Part 2

Many people were waiting at the admittance desk of the psychiatric institutional outpatients’ department. From behind, I heard a very loud female voice say: “CAN I REACH YOU VIA WHATSAPP, OR DO YOU PREFER A SIMPLE TEXT MESSAGE?” I felt this was not directed at me and thought: “Why does she have to talk so loud?!” Because if I, with my poor hearing, think somebody speaks loud, it has to be so.

Later, we all were sitting in the waiting room. Next to the lady with the loud voice sat a young woman, maybe in her mid-twenties. I noticed that said lady did not only speak to the young woman, she also was using sign language. A closer look revealed that the young woman did not wear any hearing aids or cochlea implants. So I came to the conclusion she must be completely deaf. But she did not answer the lady in sign language, she spoke to her. She had a pleasant voice, not to loud. Sometimes a few words came out slurred, but I could understand her very well. Because she didn’t use sign language,  and because of her good pronounciation, I came to the conclusion that she must have learned to speak when she was a child and lost her hearing later in life. The lady kept on talking to her in her loud voice, and I rolled my eyes: When your conversation partner is deaf, the volume of your voice doesn’t matter. An exact pronounciation is important, because it makes reading lips easier.

I really was impressed how good the young woman could speak, even without hearing anything. I wanted to tell her that, but how? I don’t know sign language, and I don’t know if I speak clearly enough that someone can read my lips. For the first time, I felt the barrier a normal hearing person has to overcome when it comes to communicating with hairing impaired or deaf people. So I decided to treat her like I would like to be treated, and tipped her carefully on the shoulder. She was so focussed on the lady next to her, I had no possibility to make eye contact.

Next problem: Do I speak directly to her, or to her companion, that translates for her? Once again, I acted like I was concerned. When sombody wants to communicate with me, he/she should speak directly to me, possible problems be damned. So I tried to speak “normally”, not to quickly and not to slowly: “Hello! I just wanted to tell you that your pronounciation is very good. I am wearing a hearing aid, and I am deaf on the other ear, so I know a little bit how difficult it is.”

Her eyes lit up, and I was so glad that I had gathered all my courage. All three of us talked for a while, the loud speaking lady was a volunteer who helped deaf people with doctor’s appointments and visits to the authorities. My guess had been correct, the young lady had heard well until puberty, than abruptly became deaf (I did not ask about the circumstances).

After I spoke to my doctor, I saw the young lady sitting in the waiting room – with a very short list of therapists that work with sign language in her hand. You have to wait for months before you can start talk therapy with a normal therapist, I don’t want to know how long you have to wait to speak with a therapist who is specialised in sign language.

This meeting, and the fact that I met many hearing impaired patients during my inpatient stays on the psychiatric ward, makes me wonder if poor hearing and deafness can contribute to mental illness. Living with a disability is always tiring, and hearing impaired and deaf persons are cut off from many social gatherings. And many normal hearing people just don’t know how to communicate with hearing impaired or deaf people.

I was “on the other side” for a short time, and it really opened my eyes. If even I, who has more than fourty years experience of living with poor hearing, feels unsure when it comes to communicating with a deaf person, how difficult must it be for a person without this knowledge. But it also shows: Communication is possible, when both sides are willing to give it a try.

See also
Waiting room musings, Part 1

0 and 40 Part 2: Demand and and encourage

My mother and I, autumn 1971

I read a german post yesterday in which a foster mother tells about her struggle finding a place in kindergarten for a child with special needs. It reminds me of the challenges my family faced in the 1970s.

Today, children in Germany are monitored closely to detect problems as early as possible. Back then, we saw our pediatrician for vaccinations and when we were ill. In my case, nobody noticed that I was dear on the left ear. Delayed speech development was explained with my premature birth.

After a infection of my right middle ear in my last year of kindergarten, my mother noticed that something was seriously wrong with my hearing, and that I didn’t react when she called me. This started an odyssey.

I remember the following tests very clearly. Doctors and hearing aids technicans were not prepared to deal with children. My mother was not allowed to be in the same room with me during the tests, even though I made it clear through crying and screaming that I didn’t want her to leave. Nobody even tried to tell me what was going on. I was a clever child, I would have understood an explanation suitable for children. I was expected to behave compliant and calm, as an adult would do. Of course I couldn’t do that, and many unpleasant experiences piled up. I became anxious and shy and regressed. My mother had to be near me all the time. It was a hard time for my mother, too. She just could stand there and watch everything.

Finally the results came in. Not only had the middle ear infection affected the hearing in the right ear, but I apparently was completely deaf in the right ear, too. This, too, was explained with my premature birth. A hearing aid was adjusted for my right ear, and we were sent our way. A hearing aid technican told me a few years ago, that some of her colleagues now have special training to treat children. I hope there are many of them.

Then I was tested for school readiness. I refused to participate. I knew the answer to all of the questions, but I was way too nervous. I kept squirming around on the chair and wanted to leave the room, because I knew my mother waited outside. At this time, children were given the oppurtunity to have a special year of preschool between kindergarten and school. This really saved me. We were a small group of ten children, all with special needs. We had a teacher and an assistant teacher. It was a lot like school, we learned to sit at our desk and started writing and counting. I slowly got used to my hearing aid.

Then I started “really” going to school, at a special school for deaf children. Teachers used sign language and spoken language simultaneously. All of my classmates were using sign language. I didn’t know anything about sign language, so I wasn’t able to really talk to them.

At this point, I could read fluently and was well into learning how to write. The classes bored me. What I didn’t know then, pupils at this school were given two years to learn what was thaught in one year at the normal primary schools. The teachers quickly noticed I was bored, and told my parents I would be better off at a regular primary school. And my parents somehow made it happen.

I was very glad because many of my new classmates were living in my neighborhood, and I knew them. It took me some time to catch up with them, but that was easy. To orient myself in a large group of 25 people was hard, especially during the breaks or physical education with lots of noise.

Meanwhile, my speach had been affected by my poor hearing. I slurred words and it was difficult to understand what I said. I started logotherapy. Hopefully it is more fun for children today. We were shown posters with many objects drawn on them, the therapist pointed at one of those objects and we had to say what it was. Once again, no explanations what we were doing, or why. This training was continued at home, we had a book with pictures in it and I had to say what was in those pictures. The practice payed off, though, I learned to speak quite well. I still slurr the “S”-sounds, my husbands says it sounds like lisping. But apart from that, my pronounciation is similar to that of a person with normal hearing.

So far, so good? I am aware of the fact that I was very lucky.

1.) My mother fought like a lioness that I get adequate therapies and help. She tirelessly worked with me, so
a) what I didn’t hear in class, I would learn later at home, so I didn’t fall behind,
b) my pronounciation was good, and I wasn’t picked on by classmates.

2.) My father was a high school teacher. So
a) money wasn’t an issue. I always got the therapies and expensive hearing aids I needed,
b) my mother could be a stay-at-home-mum and had the time to work with me,
c) being a techer himself, he was able to talk with other teachers and principals eye to eye. This gave me opportunities others don’t have.

My parents motto was: Demand and encourage. I was expected to adapt completely to the hearing world. This was no problem as my intelligence was concerned, but it took years for me to admit that some things are, and always will be, impossible for me. This is not my fault, and I can’t change it, either. Period.

What made our situation even more difficult was the fact that we didn’t know any families facing the same problems, or advice centres. And we didn’t have something like the internet back then. We fought this battle on our own, as well as we could.

See also
0 and 40: Part 1

0 and 40 Part 1: Hearing the alarm clock without hearing

This is the first part of a series dealing with my hearing impairment. “0 and 40” refers to my residual hearing, 0% on the left, 40% on the right ear.

I have been called “stupid” (not true) and “deaf” (not completely, thanks) by people with normal hearing. I think, many facts about living with impaired hearing are not as well-known as they should be. Poor hearing often is associated with old age, that’s not the whole truth either. 

It’s important to keep in mind that there is not ONE, but MANY ways to deal with deafness. Everybody has to find his/her own. 

In my case, the hearing of high frequencies is drastically impaired. That affects comprehension of speech and noticing high sounds as ringing telephones, doorbells or alarm clocks.

When I was a child, my parents tried every kind of alarm clock. Everybody would be wide awake, except me. So for the next years I was dependent on somebody waking me in the morning. Then we found out accidentally, that music (music contains more deep frequencies than the beeping sound of a normal alarm clock) from a radio alarm clock would wake me. I was so thrilled, because that meant a piece more of independence!

That worked well until a few years ago my hearing worsened (that can happen in your mid forties). I do not respond well to light alarm clocks, so I had to look for something that works with shocks. And it had to be portable, in case I don’t sleep in my bed. 

Our first try was a dual radio alarm clock with an alarm shock bracelet. Both alarms could be set to beeping, beeping and activating the bracelet, or just activating the bracelet. The bracelet had three settings. It worked well for me, and my husband still uses this alarm clock in beeping mode. But there was one problem: The bracelet had no charging indicator, so I couldn’t be sure if there was enough power left to wake me in the morning. That led to unnecessary charging and/or worrying if the bracelet would go of in the morning. 

For me, a cheap smartwatch works best. It’s silent vibration-based alarm clock is strong enough to wake me, and it has a charging indicator. This is not for everyone, i.e. when light impulses work better or no smartphone is around. But I was pleasantly surprised how many alternatives to the classic alarm clock can be found.