Archive for February 2013

Wednesday 28/02/1990 – 2nd lesson Play dough

We were looking forward to another lesson with Nessa.

Wed: 28/02/1990

Activity: play dough

Aim:

1.       eye contact

2.       Auditory training

3.       Repetition

Play dough recipe

2 cups of flour

1 tablespoon salt

1 tablespoon oil

Dash  of colouring.

Mix together and then gradually add water and tool the dough mixture has a correct texture. Keep in the fridge.

Good Sue your trying to name everything and your correcting your staff immediately if you use “it”.

You’re getting his eye contact. It’s not easy but you are using the correct methods. In other words – you are not touching him, you are clapping, using sound, taking things next to your face J keep this up.

“Give me the spoon”

“pour, pour the flour”

“pour, pour the oil”

That is Lovely repetition. First you used the main word on its own and then in a short full sentence.

Remember to interpret his babbling and actions – “Give me the cup mummy” if he stretches out his hand and wants the cup. Also when doing auditory training copy the sound with your voice ie: Bang! Bang! Knock! Knock! You’re using your face nicely and pointing to your ear. Good!

Thank you Sue and Willem – see you tomorrow.

Nessa

After the lesson we took the boys to the beach in Cape Town.

Making Books with your child

MAKING BOOKS  -

This is a fantastic way of having fun with pictures that relate to your child’s everyday activities, places you visit, friends and family, pets etc.

Having the books available for your child to access and show you pictures from the book will help curb any frustration of not being able to express themselves.

Make the books as follows -

  • one book for one theme
  • stick one picture on a page
  • you can write the word underneath.

Here are some themes to start with –

a)      Body book – face, eyes, nose, mouth, teeth, ears, hair, neck, arms, leg, feet, hands etc.

b)      Animal book - cat, dog, bird, cow, horse, sheep, chicken, duck etc – lovely for auditory training.

c)       Clothes – shoes, socks, hat, shirt, shorts, vest, jumper etc.

d)      Food -  banana, bread, biscuits, eggs, milk, juice, cake etc – all the things he eats.

Then you can take each room in the house:

e)      Rooms in the House –  Bathroom – Bath, tap, towel, soap. Kitchen -  stove, fridge, table, chair, plate, Knife, fork, spoon etc. Bedroom – bed, blanket, pillow, cupboard, teddy etc.

Another lovely idea is an Action book e.g. run, jump, sleep, eat, kick the ball, read, swim etc.

More tips :

  • try find the biggest picture
  • look for a picture that is coloured rather than black and white
  • keep the books in a particular place so Hughan can become familiar with them so that he can have access to these books whenever he wants to read them
  • always use full sentences
  • don’t just name the picture e.g. “this is a dog” – discuss the picture i.e.” the dog is dirty”, “he has mud on his paws”, “where’s Hughan’s paws?” “ Hughan has got feet” etc.
  • making the books should be great fun!

The First Lesson – 27/02/1990

The Carel du toit Centre – 27/02/1990

When we arrived for our first lesson at the centre, Nessa was there to greet us and we were taken into a room that looked exactly like a sitting room.

On one wall was a big glass mirror. Nessa explained to us that she would be sitting in the room next door, observing Willem, Vil and I while we were playing with Hughan. She would be correcting us while we were playing with him and encouraging us to work with Hughan in such a way, that he would learn his lip reading skills and how to communicate.

“The first lesson” – 27/02/1990

Activity: Tin and blocks and dog

Aim: 1) To teach Hughan to be aware of sound and to react to sound.

2) Eye contact at all times.

Lovely Sue and Willem you both waited for eye contact with all you gave him the language.

He immediately pointed to his ear and his nose and his eyes when discussing the dog’s face. Lovely J.

Sue you used your face nicely and pointed to your ear. Vil did this well too. It’s great that you are  incorporating him. I know it feels silly to point to your ear in the beginning but with time you will not even think about it.

Remember to interpret his actions and babbling -

If he stretches out his hand – say “give me the bowl mummy”.

Name everything – as of now “IT” is no longer in your words.

“Put it in the tin” – rather say “put the blocks in the tin”.

Thank you – I am looking forward to working with you –

Nessa

Top Tips – Working with your hearing impaired child

Welcome to Hughan’s diary Top Tips.

These are the top tips that I was introduced to when we first started the program at the Carel du Toit Centre, in Cape Town, in February 1990.

1) Keep a Diary -

A diary is a fantastic way of writing down the progress your child is making, activities you have done at home concerning your child’s development.

Take photos of the activities you do as well.

The diary should be fun and where you get your inspiration.

By doing this every day or at least once a week it enables you to look back at your diary notes and realise the improvements.

(I am able to look back 23 years to our diary to realise what we did to help our son)

2) Name Everything -

Never use the word – “IT”.

Everything has a name. By naming everything your child will learn the language.

For example –     say “ball….give me the ball”

-          not “give it to me”

A hearing impaired child needs to hear a word many times (I was told 20,000 times) before they will have the inclination to repeat that.

3) Always Face towards the light (window)

Your child must see your face clearly when you talk to them, because they can make use of the extra information to fill in “gaps” – your emotion (sad, happy, excited).

4) Eye contact -

Always make eye contact on eye level.

Kneel down when you talk to your child, or pick him up, or hold them on your lap.

5) Hold objects next to your face -

Hold objects which you are talking about next to your face.

e.g. “ball”, hold a ball next to your face when giving the word.

“This is a ball”, “this is David’s ball”, “catch the ball”, “give me the ball”.

6) Talk about things that interest your child -

Talk about the things he is doing, is looking at, is playing with, is eating.

Talk about his clothes and his body parts when dressing him, also at bedtime.

Talk for him e.g. your child points to a ball (maybe also making some “sounds”).

Ask yourself – what does he want to say? Then say the words for him -

“I want the ball”, “give me the ball”, “here is the ball”.

7) Auditory training –

This is also very important. Your child has residual hearing and we must help to make the most of it.

We must develop his listening skills

a)      we must make him aware of sound and no sound

b)      he must be able to localise sound (where it is coming from)

c)       he must react correctly to sound

d)      he must learn the meaning of sound

e)      we must refine sound

8) speak clearly and in full sentence –

Take one word out of the sentence and repeat it, if you want the child to repeat it. Use that word again in a sentence.

e.g. “cup”, “this is a cup”, “take the cup”.

9) Encourage the child to copy words –

Be happy if he says something even if it is just a sound or part of a word because this will encourage him to try again. Copy what he says because this will teach him what communication is:

e.g. mummy says something…….( I listen)

I say something…….. (mummy listens)

10) Remember – everything has a name –

Give the child the names for things and actions and so the number of words he knows will become more.

e.g. “car”, “this is a car”, “daddy drives a car”.

All babies hear a number of sounds. They become familiar with this sounds.

The sounds which have an important meaning for the child, will be the most easily learnt.

The most important sound is his mother and father’s voice.

On getting used to his mother’s voice (sound), he shows a response.

He discovers his own voice (sound), then later on he tries to imitate the sounds he hears. That is why meaningful talk and repetition is so important.

If his parents imitate his sound, he starts learning the meaning of communication:

e.g. – baby smiled at mummy……. mummy smiled back.

- baby makes babbling sounds…….. mummy imitates them – they are communicating!

REMEMBER :

1) always wear their hearing aids

2) keep the moulds clean

3) check that the batteries

4) when you put their hearing aids on, smile and say “I can hear”! Your face must show him that hearing is fun.

Also “educate” all the members of the family and friends who play with, or talk to your child – this is very important.

This is a team effort and your child will only benefit from it.

“I hope you find these top tips helpful while you are working with your child”.

Remember your child will copy your actions.

Never get angry or frustrated with your hearing impaired child – they will copy you!

By giving your child love and encouragement they can achieve everything you wish…..

I feel blessed to have had their hearing impaired child myself. He has taught us so much.

Hughan’s Diary 23 Years Ago

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This DIARY has enabled me to bring you our story.

Dear parents

Welcome to our program. We hope, and believe, that you can benefit from it in guiding your child. The child is utterly dependent on the adults near him, most of all on his mother and father.

You are welcome to use this book to write down any change in progress, or activities done at home, concerning your child’s development. We will appreciate it if you will do that at least once a week because we do acquire insight in his progress as well as your observation of him. Remember to bring this book every time.

Remember to attend all appointments. If you cannot attend your appointments please contact us as soon as possible and cancel it. This gives us a chance to help another patient during that time.

Please read and reread all the information in this book from time to time!!

A few points to remember while you are working with your child:

1) Always face towards the light (window) : your child must see your face clearly when you talk to him because he can make use of            extra information to fill in “gaps”, for example – emotions (sad, happy, excited).

2) Eye contact: always make eye contact on eyelevel. Kneel down when you talk to your child, or pick him up, or hold him on your lap.

3) Hold objects: which you are talking about next to your face: for example – Ball. This is a ball. It is David’s ball. Catch the ball. Give the ball.

4) Talk about things that interest your child: talk about the things he is doing, is looking at, is playing with, is eating. – Talk about his clothes and his body parts when dressing him also at bath time. – Talk for him, for example, your child points to a ball (maybe also makes “sounds”). Ask yourself: what does he want to say? Then say the words for him: I want the ball. Give me the ball. Give me the ball, mummy. Here is the ball. Thank you.

5) Auditory training: This is also very important. The child has residual hearing and we must help him to make the most of it. We must develop his listening skills.

a)      We must make him aware of sound and no sound.

b)      He must be able to localise sound.

c)       He must react correctly to sound.

d)      He must learn the meaning of sound.

e)      We must refine sound: – environmental sounds, animal sounds and speech sounds.

6) Speak clearly and in a full sentence: Take one word out of the sentence and repeat it, if you want the child to repeat it. Use that word again in a sentence, for example – Cup. This is a cup. Take the cup.

7) Encourage the child to copy words. Be happy if the child says something even if it’s just a sound or part of a word, because this will encourage him to try again. Copy what he says because this will teach him what communication is: mummy says something (I listen) – I say something (mummy listens)

NEVER USE THE WORD “IT” – Remember everything has a name. Give your child the names of things and actions and so the number of words he knows will become more, for example – Car. This is a car. Daddy drives a car.

All babies the number of sounds. They become familiar with the sounds. The sounds which have important meanings for the child, will be the most easily learnt. The most important sound is his mothers and fathers voice. I’m getting used to his mother’s voice (sound) he shows a response. He discovers his own voice (sound), then later tries to imitate the sounds he hears. That is why meaningful talk and repetition is so important. If his parents imitate the sounds, he start learning the meaning of communication:  Baby smiles at mummy – mummy smiles back. Baby makes babbling sounds – mummy imitates them. They are communicating.

REMEMBER:

1)      always wearing the hearing aids

2)      keep the moulds clean

3)      check the batteries

4)      when you put the hearing aids on, smile and say I can hear!” – Your face mass show that hearing is fun.

Also educate all the other members of the family and friends who play with, or talk to your child – this is important, this is a team effort and your child will only benefit from it.

Thank you

Nessa

Speech for Deaf Children

On our return to Botswana from our holiday in England, life was back to normal. Willem was at work, Vil was at play school and I was looking after Hughan at home.

I was spending most of my days getting information and deciding on how we were going to work with Hughan.

There were no home computers or places to go, to get information about deafness in Gaborone.

I had not taken Hughan back to Johannesburg yet, to the centre where he was being taught sign language.

A friend of ours told us that there was a family living in Gaborone whose daughter was also profoundly deaf.

I was invited to go and have tea with her, where she met Hughan. It was fantastic to meet somebody who was so like-minded and it was very reassuring when she told us that their daughter was now a teenager and she was doing very well with her lip reading skills and learning how to speak.

They had been travelling to a centre in Cape Town at Tygerberg Hospital, called the Carel du Toit centre.Professor Carel du toit had started the centre. He had started to test new born babies for deafness as part of the prodeedure he carried out when he was checking new born babies. He wanted to diagnose deafness as early as possible, so babies could start wearing hearing aids.

The Carel du toit Centre had also started doing the cochlear implant procedure, although it was still very early days of invention.

Her daughter had never been taught sign language and it was a speech orientated programme that they had followed.

I had explained to her that we had started taking Hughan to Johannesburg, where he was learning sign language.

They had also gone through a similar experience to us deciding on how they were going to work with their daughter. She encouraged us to contact the centre and travel to Cape Town to see if we were happy with the programme they offered.

So the arrangements were made and we travelled by car as a family, to Cape Town to the Carel du Toit centre.

We were given such a warm welcome when we arrived at the centre and we were given accommodation on the grounds of Tygerberg Hospital.

On the first day, we were asked to watch a video about the centre and the programme. The video started in absolute silence and this gave Willem and I an idea of what it was like for Hughan to sit in front of the television.

We were introduced to Nessa, who was going to be teaching us how to work with Hughan.

Nessa was so excited to meet us and indicated she was looking forward to working with Hughan. Her enthusiasm was very uplifting and gave us great hope.

She also told us that deaf children were very special and as parents we would find it very rewarding working with Hughan.

At last we had come across the centre that we wanted to work with. The decisions that we made along the way were critical to the outcome of Hughan’s achievements today.

Hughan is now 22 years old and can hold a normal conversation on his mobile telephone.

This is such a fantastic achievement and I am very happy to share with you the diary that we kept from when we started at the centre.

It is 21 years since we started Hughan’s diary.

It is the little things that we did every day that enabled him to learn to speak. Please keep a diary of your child and you will be able to do the same as us.

You need to have the belief and the desire to help your child and anything is possible.

This is our experience and you can make your own decisions along the way as to how you would like to work with your child.

You can send me messages through Facebook and followed the diary on twitter.com/hughansdiary.

I just want to wish you all the very best.

Sue


Just like Winning the Lottery

It was December 1989 and Willem, Vil, Hughan and I travelled to England to visit my family for Christmas.

Vil had been to England before, but this was Hughan’s first trip. Hughan is named after my Father and I was looking forward to them meeting each other.

Arriving in England was a complete contrast to the way of life in Africa. We were so used to open spaces and natural bush. In Gaborone, where we were living, we had recently had our first set of traffic lights put in and the roads crisscrossed with lots of roundabout. With all the animals straying on the roads, you can imagine it was very different for us arriving in England. We also only had one lane of traffic going into the city and one lane going out, so the width of all the roads and all the traffic was a complete contrast.

The boys were very excited when we arrived. We had also come from a very hot climate, to the cold. Where we were living the sun rose at the same time of day during the summer and winter. So when we arrived in England everything seemed quite dark.

The family were very pleased to see us and it was wonderful arriving at the family home in Fowey, Cornwall. My parents lived in a wonderful house called Point Neptune. The house is situated at the entrance of the harbour, with spectacular views.

Before Christmas, we had our appointment to attend in the Harley Street, London. This was with the Ear Nose and Throat Specialist who my father had arranged for us to see, to confirm the diagnosis we had been given in Africa.

Willem, Hughan and I travelled by train from Par, in Cornwall, to London. Vil was very excited to spend the day with his grandparents.

We arrived at Paddington station and caught a taxi from the station to Harley Street to meet the Specialist. The Specialist went through all of Hughan’s records that we had brought with us and he confirmed what we had been told previously about his diagnosis.

After our appointment we went on to see an Audiologist. She explained to us that we needed to continue in the signing programme that we had started in Johannesburg, to learn to communicate with Hughan.

Willem and I were still struggling with the idea of signing. The idea that there wasn’t a universal sign language meant that Hughan would have to learn signing at the centre in Johannesburg and when he travelled, it would be different. This also meant that family members would need to learn how to sign as well.

We came away from the appointments at Harley Street feeling that there were no other solutions to Hughan’s hearing loss.

London was very busy. The day had been a bit rushed but the time we had spent with the Specialist and the Audiologist had been very informative and also encouraging to see that South Africa and England were working in a similar system.

We caught a taxi back to Paddington station. Paddington station was a buzz of Christmas shoppers. People were making their way onto the trains with all their Christmas shopping.

When we boarded our train there were a lot of people standing in the aisles and most of the seats had been pre-booked. There was a lady sitting at a table with some spare seats and we asked her if she minded if we joined her. Within a short time we started chatting. She had noticed that Hughan was wearing hearing aids. She explained to us that she was studying the cochlear implant.

This was just like winning the lottery. As you can imagine Willem and I couldn’t believe our ears. She had also been to University with the Audiologist we had been with earlier in the day.

It was so interesting listening to all the information she was giving us about the cochlear implant. She explained the differences between the Australian and the American devices. At this early stage of the invention of the equipment, there were differences in the makeup of the electrodes that were being threaded into the cochlea. She explained that, if by any chance, the device had a breakdown and needed replacing, the Australian equipment was more like a silky thread and there was less damage to the cochlear, if the internal equipment needed to be changed for any reason.

To think that we had travelled all the way from Botswana to our appointment at Harley Street, and got onto our train at Paddington station (when I was so busy) and sit with the a complete stranger, who was able to give us so much information about something we had never heard of and this was going to prove life changing.

This had been the most amazing day for us. Hughan was still so young, but for us to have boarded the train when we did and asked to sit with this lady, was in absolute miracle (we still hope one day to meet her). She got off the train at Plymouth, where she was spending Christmas with her family and we continued on to Par station.

The day to London had been the most fact full day for us so far. A wonderful outcome and now we had information that we knew would help us in the future.

We all had a truly magical Christmas in the cold. The darkness of the days and all the Christmas lights made it feel so special. This was one trip we would never forget.

Our trip to England seemed to fly by very quickly and we had all had such a wonderful time.

It was now time return to Gaborone.

Sign Language

Hughan had his hearing aids fitted and he was very happy to wear them, which was great.

The hearing aids had a high amplification of sound, which were designed for someone with a profound loss of hearing. After they were fitted Hughan was still not responding to sounds.

I started making weekly trips, to and fro from Gaborone to Johannesburg, were Hughan was attending a centre where he was being taught sign language.

After a few weeks of Hughan learning sign language, I was invited to a meeting where we were introduced to some children from one of the deaf schools in Johannesburg.

While children were sitting on the floor waiting for the meeting to start, they were all signing to each other and even laughing in absolute silence. This was something I had not taken into consideration. I couldn’t believe that my son was going to grow up like this. This was something that really upset me.

I had never been exposed to deafness before and this was a great shock.

During the meeting that afternoon, many subjects were discussed. We were told that signing varied from town to town, almost like foreign languages, from country to country. For example they said that signing for the word “sun” was different from Johannesburg to Durban to Cape Town.

I found this very hard to believe, as you would think that once you were taught to sign, you would be able to travel anywhere in the world and communicate with other deaf people. This was not the case.

I was still finding it hard to believe that Hughan was deaf and I want to fix what was wrong with him.

I phoned a friend of mine in Zimbabwe who laid hands on very ill patients in hospitals. She had very strong healing powers. I discussed Hughan’s deafness with her. I was sure that may be she could help. I explained to her what tests had been done on Hughan. She told me that with nerve damage there was nothing that could be done to help. I felt devastated and I still wasn’t prepared to give up.

I was sure that Hughan would learn to speak, even though we had been told by many people that his hearing loss was so profound that learning to speak was nearly impossible. Willem and I were both struggling with the idea of signing and we wanted to encourage Hughan to speak.

Willem and I booked a trip to England to spend Christmas with my family. My father suggested that while we were on holiday, we should take the opportunity to travel to London to see a specialist in Harley Street for another opinion. He was happy to make the arrangements for us.

We decided that this would be a good idea and an appointment was made.

Christmas was drawing near and we would look for more answers in England.

Believe


We stayed in Johannesburg overnight with Willem’s sister and family.

The next day we took Hughan for a second opinion with another specialist.

Hughan was sedated and had the same brainstem test again that he had the day before. The test gave similar results and afterwards the specialist said to us “Hughan has a hearing loss that is so profound, not even hearing aids would benefit him. He should start a signing programme straight away”.

What did all this mean?

As soon as we had finished at this appointment, Willem and I took the boys back to see Dr Davidge Pitts to discuss the results.

Dr Davidge Pitts was very angry that the other specialist had passed such a remark.

He said to us “It is up to you as parents, this boy will lead a normal life, you have to believe this. A lot of work has to be put in and one day he will be able to talk, but it is the support you give him as parents, that will help him achieve this”.

Dr Davidge Pitts had explained to us that Hughan had nerve damage in his cochlear. In the cochlear there are little tiny hairs that react to sound and Hughan’s were not responding. This was irreversible damage.

Going back to see Dr Davidge Pitts had proved to be very important. We had already realised that it was important to make the right decisions when seeing different specialists. Each specialist had their own ideas and as parents you have to be comfortable with decisions you are making.

While we were with Dr Davidge Pitts an appointment was made for us to see the specialist for hearing aids. Before we left for Gaborone we took Hughan for some ear mould impressions to be done and some hearing aids ordered. We were to return the following week for the fitting.

We had to believe we were capable of helping Hughan.

A Rollercoaster of Events


As soon as we had been told that Hughan may have a hearing problem, it seemed like forever that we were searching for answers.

What was to follow was like a rollercoaster of events.

From this point on we spent a lot of time checking to see if Hughan was responding to noises we were making. He still seemed so young and we were unsure if he was giving a true response to us. This was because he was always a happy and contented baby and he never show any stress when he been exposed to loud noises like the thunderstorms.

When were we going to get our questions answered?

Three weeks later Hughan and I went through to Johannesburg to see the Ear Nose and Throat Specialist, Dr Davidge Pitts. At this first appointment I expressed my concern that Hughan could not hear us and that he was not responding to noises that we were making.

I mentioned that Willem had also noticed that when he came home, from work, and walked into the room where Hughan was, he would call out to Hughan to say hello and he would not turn round or respond to his call.

Dr Davidge Pitts said that Hughan first needed to have grommets fitted in his ears, to help drain the “glue ear” discharge and reduce the pressures in his eardrums. Another appointment was made and we were to return to Johannesburg in five weeks time.

Hughan had his grommets fitted and we then had to wait for another appointment, to see if the grommets had helped. After the surgery, I was given some ear drops to put into Hughan’s ears. I often wondered if these drops were a contributing factor to Hughan’s profound hearing loss as Hughan cried afterwards (the side effect to the drug was hearing loss).

These appointments seemed to be never ending. I was going backwards and forwards from Gaborone to Johannesburg and not getting our questions answered.

By this stage we were very aware that Hughan had a problem with his hearing. Once when I walked into the room with a pot and a wooden spoon and banged it loudly a little distance behind where Hughan was sitting. He had not responded to the sound it made. I then walked into his line of vision and he saw me and burst into tears. He was hungry and he been totally unaware of what I had been doing behind his back.

I took Hughan back to Morning Side Clinic to see Dr Davidge Pitts for his next appointment and to find out if he still had a concern that Hughan was not hearing. Now that the “glue ear” had cleared up and his eardrums were looking healthy, Dr Davidge Pitts carried out a few tests with noises and said that he was concerned that there was a hearing problem and a hearing test needed to be booked.

At last a hearing appointment had been booked.

Hughan was 14 months old and on the day of his hearing test, Vil was also booked to have his tonsils out. Willem and I travelled together with the boys to Johannesburg and I was with Hughan and Willem was with Vil.

Vil went with Willem and he was admitted into the hospital. It was only once the specialist saw Vil that he realised that he had tonsillitis and that he couldn’t have his tonsils out that day.

I took Hughan into his hearing appointment.

He had been booked for an adult hearing test and not one for a baby. The test that had been set required a response to sounds coming out from speakers.

When the nurses realised what had happened they said that he couldn’t have the test that day.

I burst into tears with desperation, all we wanted that day were our answers.

The nurses were very helpful and decided to take their lunchtime off to do a brainstem test on Hughan. This was such a relief.

I never realised it was such equipment existed that could monitor what a baby was hearing. Hughan was sedated and lay very quietly as he had electrode pads put on his head and the test started.

While the test was being done I could hear the volume of the equipment and I knew that the outcome was going to be the worst. The nurse kept saying to me “how did you know that Hughan had a hearing problem”.

It had been five months since we had seen the paediatrician and he was concerned that Hughan may have a hearing loss. By this stage we were very aware that Hughan could not hear us.

The results of the test were that Hughan had a profound hearing loss of 110 dB, not even a corner showing on the graph.

Willem had now joined me and was comforting me.

Once the test had been completed we all went in to see Dr Davidge Pitts and he said that we were welcome to go for a second opinion. He also explained what the meaning of “a profound hearing loss” was. He said that if a jumbo jet was taking off and Hughan was nearby he would be unable to hear the noise.

Willem and I thought this was a good idea, so an appointment was booked for the next day with another Specialist.

At last we were getting answers.

The day had been exhausting and we were staying in Johannesburg with Willem’s sister and family overnight. We would get a second opinion the next day.