Hughan's Diary

30 years ago...In January 1990 we had just got back home to Gaborone from appointments with Hughan in England. At this stage it seemed like England and South Africa had a similar approach to deafness, both signing, so there was no need for us to move there.

On our return home, we heard about a family living in Gaborone who's daughter was profoundly deaf. I made plans to visit them to find out about their experience. They had followed a speech only program at The Carel du Toit Centre, in Cape Town, to teach their daughter her lip-reading and communication skills. They highly recommended we making plans to visit the Centre with Hughan.

After a phone call to the Carel du Toit Centre, a date was set for Monday 27th February for us to travel to Cape Town, where accommodation was available for us to stay during our visit, on the grounds of Tygerberg Hospital.

Up until now we had been introducing sign language to Hughan. We were excited to find out about a new approach to teaching Hughan to communicate. At this stage he was 17 months old and totally unaware we were talking to him.

There was no Deaf Community in Gaborone. We had found out that sign language varied from city to city and country to country and wasn't a universal language. This was a challenge for us, as we would have to teach everyone who came into contact with Hughan his sign language, so the idea of teaching him to use his voice was very appealing.

We were all looking forward to our trip to Cape Town.

IMAGINE A WORLD OF SILENCE...then imagine this was your child's world!

Today we celebrate our journey of 30 years, since we were told our son was profoundly deaf.

On the 13th October 1989, 30 years ago today, we were told your son couldn't hear, in fact he couldn't even hear a jumbo jet take off at close range!

At the time we were living in Gaborone, Botswana, where there were no Paediatricians, Ear Nose and Throat Specialists or deaf community to get help and support from, so we had to travel 5 hours to appointment in Johannesburg, South Africa.

There were also no home computers yet with internet or google to find answers or emails to communicate easily. Mobile phones hadn’t been invented yet, so there was no easy access to speak to people or get our questions answered. We had a feeling of absolute desperation! How were we going to help him?

If I can take you back 5 months, to when Hughan was 9 months old, to his initial appointment with the Paediatrician in Johannesburg, when he had told us Hughan might have a problem with his hearing and recommended us to take him to see an Ear Nose and Throat Specialist, which we did. We had been going back and forth from Gaborone to Johannesburg for many appointments, including Hughan having grommets fitted, to help drain the “glue ear” discharge he sometimes suffered with from ear infections and reduce the pressures in his eardrums. 

Every day was challenging. We wanted our questions answers and still unsure how we were going to help Hughan with his hearing and communication skills, or if he wasn't actually hearing us. We had spent a lot of time each day checking to see if Hughan was responding to noises we were making. I had even done my own little hearing test, by banged a pot with a wooden spoon as loud as I could, behind his back without him being able to see me, and him not responding at all. 

He still seemed so young and we were unsure if he was giving a true response to us; as he was a happy and contented baby, always babbling away.

At last, five months later, a hearing test was booked for the 13^th October. Hughan was 14 months old now and we were hopefully going to get a result from him having a hearing test and our questions answered. 

That day we had the added pressure of Hughan’s brother, Jamie, having his tonsils out. My husband, Willem, had also travelled with us to Johannesburg and I was planning to stay with Hughan and Willem with Jamie.

Willem went with Jamie and he was admitted into the hospital. It was only once the specialist saw him, as he was about to go into theatre, that he realised that Jamie had tonsillitis and couldn't have his tonsils out that day.

While this was all going on with Jamie, at the same time I had taken Hughan for his hearing test appointment. Going into the room for his test, it soon became clear that the wrong test had been set up to test him. It was set for an adult and not one for a baby. There was seating with speakers set for an adult to respond to sounds they could hear, which was not the appropriate test for Hughan.

When the nurses realised what had happened, they said that he couldn't have his hearing test that day.

I had burst into tears with desperation, all we wanted were some answers. The nurses were very kind and realised how important it was for Hughan to have his test that day and decided to take their lunchtime off to do a brainstem test on Hughan, not even knowing what this meant!

While the test was being done, I was very tearful and could hear the volume of the equipment was very loud and knew that the outcome was going to show Hughan couldn’t hear us. The nurse kept saying to me “How did you know that Hughan had a hearing problem?”

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

At last we were getting answers. What a roller-coaster of emotions it had been! The day had been exhausting. 

At the second appointment the following day, the same results were given. This Specialist told us Hughan wouldn't even benefit from wearing hearing aids and he should start a signing program straight away. His hearing loss was so profound, he would never be able to hear speech sounds or learn to speak.

Luckily we went back to see our original Specialist who told us this was not the case. Hughan should be fitted with the most powerful hearing aids available. He was also going to rely on us, as his parents, to teach him his communication and lip-reading skills. Hughan could achieve so much during his life, but would be totally relying on us to help him.

As you can imagine, this was the best advice we could ever get and have kept this advice in our minds every day since then. It's the choices we've made over the years that have impacted on Hughan's life. It's the consistent, persistent effort over a long period of time, that has added up to a huge amount and been life changing for him. Always having a positive attitude and never giving up! 

We would like to thank Dr Davidge Pitts, who was our Specialist at Morningside Clinic in Johannesburg for his advice. This advice has impacted hugely on our attitude to help Hughan and the achievements he's made with his hearing and speech since then.

We are truly thankful for our journey since then. Hughan is now in his 30's and can even hold a conversation on the phone, chosen to leave home in England, get married and live in New Zealand with his beautiful wife Emma, who is also profoundly deaf.

30 years ago in May 1989...our son Hughan was nine months old and still a very happy, content baby. He enjoyed sitting and playing with the toys he could reach with no signs of wanting to crawl yet. He was also babbling well and often sat chatting to himself.

As there were no Paediatrician's in Gaborone, I decided to take Hughan to Johannesburg for his baby check up to see one there. This involved going through the boarder post between Botswana and South Africa. The Paediatrician was based at Morningside Clinic near Johannesburg. The journey was going to take about 5 hours and I arranged to stay with friends overnight.

Hughan was always very good in the car and used to travelling in his baby car seat. I was quite confident driving on the roads in Johannesburg, where there was a big concrete highway that passes around the city with different off-ramps off to the surrounding areas. Our friends lived fairly close to the Clinic, which meant we didn't have to travel far for our appointment.

During Hughan’s appointment the following day, the Paediatrician put him on the bed for his examination. Hughan lay very quietly while he was being checked over thoroughly.

While the Paediatrician was talking to me, I was unaware of him scratching the surface of the bed near Hughan's head. When he had finished speaking to me, he said " I think Hughan might have a hearing problem". As you can imagine, this came as a great shock and had a huge impact on me; explaining he had been scratching the surface of the bed and Hughan had not turned towards the sound it was making.

This is the first time that I became aware that Hughan may have a hearing problem. Hughan had been lying on had a plastic sheet and when the Paediatrician repeated scratching the surface to show me, the sound was quite loud and noticeable. Hughan still didn't respond to the sound. 

The Paediatrician did an examination of Hughan’s ears, and he mentioned that he might have “glue ear”(this is a condition when the middle ear fills with liquid, that becomes thick and sticky, and can cause hearing loss). Because of this he recommended that Hughan went to see an Ear Nose and Throat Specialist.

There were also no Ear Nose and Throat Specialist in Gaborone, but luckily there was one next to the Paediatrician's rooms at Morningside Clinic, so I was able to go straight after our appointment to book an appointment to see that Specialist.Unfortunately the soonest available one was in three weeks time. 

There was no ways at this stage that we would ever have questioned whether Hughan was hearing us, as we thought he was responding to sounds and also at a similar stage to babies his age, although he was not as active.

This felt like a life changing moment.

We returned home to Gaborone and the following day I decided to do my own little hearing test. It was nearly Hughan's lunch time, so I walked into the lounge where he was sitting with his back to me and called out to him loudly, but with no response. I then decided to get a pot and wooden spoon in the kitchen and return behind him, where I banged the spoon as loud as I could on the pot, but still he didn't respond.

This was devastating. How were we ever going to find out how we could help him hear. 

At this time there were no home computers with internet to google and search for answers yet. There was no deaf community in Gaborone that we knew of to get support from, our family lived far away in Zimbabwe, South Africa and England and my dear Mum had died when I was 23 years old.  

I had an absolute feeling of determination, I was never going to give up.

The only choice we had at this stage was to wait 3 weeks for our appointment to see the Ear Nose and Throat Specialist at Morningside Clinic.

Hughan was fitted with grommets (a procedure done using anaesthetic, which involves surgically placing a small tube in the eardrum, enabling airflow into the middle ear, helping to dry up the fluid) which involved returning to Morningside Clinic.

We had several more appointments and many trips back to Johannesburg. A hearing test was booked at last for the 13th October, 5 agonising months after we first found out maybe Hughan couldn't hear us. At last we would find out if he could.

Welcome to the new home page of Speech for Deaf Children. The website has just been updated from it’s first version that was created back in 2013. I’m hoping this website will give me a platform to share the valuable information that I have, with parents of deaf children around the world.

You may have seen our Facebook page and that is a tool that I use to communicate with parents around the world. At the time of writing this the Facebook page has just under 50,000 people on it.

We would love you to 'like' our page, if you've not already, by clicking the button below, and follow us to help other parents with deaf children around the world.

Why the relaunch of the website?

My passion is to help other parents with deaf children through my experience, and by updating our original website, from 2013 to this one, we are hoping to improve your access to our information.

In 2008, when I turned 50, I wanted to write down what we had done to help Hughan, in case another member of our family has a deaf child in the future. I started reading Hughan’s Diaries from 1990 and soon realised there was a lot of information there, so started writing a book. In 2011, while tidying up, I came across all our records dating back to 1989, before Hughan was diagnosed profoundly deaf. Reading through these notes and entries made me remember how desperate I felt back then in Gaborone, Botswana. There were no home computers with internet, no google to find information, mobile phones hadn't been invented yet, so it was very difficult to find information about deafness and communicate with others. There were also no Specialist doctors or Pediatricians' for baby check ups and no deaf community to get support and advice where we were living. How was Hughan ever going to learn to communicate? Would he be able to go to school one day? Would he ever be able to leave home? At the time I thought 'no' to all of these.

When Hughan was 9 months old we became aware he couldn't hear us, but it took 5 agonizing months before he was diagnosed profoundly deaf, at 14 months old, and received his first powerful hearing aids. We were told by one Specialist in South Africa that our only option was to teach him sign language, which we found out isn't a universal language, and varies from place to place around the world; if we taught Hughan sign language in Southern Africa, he would be solely reliant on us, as his parents, for guidance if we ever went to live anywhere else. What made it even more challenging was that sign language also varies from town to town.  

In December 1989, searching for answers, we flew from Botswana to England to see Specialist in Harley Street, London. We wanted to find out if South Africa and England had a similar approach to deafness, which they did and signing was still our only option.

(This is a picture of my Dad with Hughan on his lap and his brother Jamie. We were on the train, taking Hughan to his first appointment in Harley Street.)

Due to a chance encounter with Dr Elaine Saunders on another trip to Harley Street, sitting on the train between London Paddington Station and Cornwall, we found out about the pioneering work being done on the cochlear implant in Australia. Elaine had just flown in from Australia and was on her way to visit family in Devon when she told us. 'This was just like winning the lottery.'

Back home in Botswana luckily one evening we watched a documentary on Helen Keller. We hadn’t ever heard of her before, but as we watched it I realised that if this lady, who was deaf and blind had achieved so much during her life, then so could our son. It also made me realise that teaching Hughan his communication skills was going to take lots of effort.

From there we found out about the Carel du Toit Centre in Cape Town, South Africa, where we chose to follow their program and incredibly they had already implanted their first child with the cochlear implant device from Australia. Hughan was the 10th child to receive the implant at the age of 3 and a half in 1992, this was before England started implanting children.

Choosing a program we believed in and putting 100% effort into what we were taught, has paid off. It's the little thing we did every day over a long period of time, that has added up to a huge amount. It's the consistent, persistent effort and a positive attitude we were encouraged to have, that helped. Also never giving up.

Just imagine, if it wasn’t for that chance encounter with Dr Elaine Saunders on that train in 1989, Hughan would now be living in a silent world and communicating through sign language.

Elaine Saunders, the lady who we met on the train in 1989, is now an internationally recognized hearing scientist, audiologist and entrepreneur. We bumped into her just after our final hopes of our son having some sort of a “normal” life had been severed by the last doctors we’d planned on seeing in the UK; as we were heading home to my Dad’s before heading back to Botswana in defeat!

I don’t think there’s a mathematician in the world who could calculate the odds of that encounter, but it was that ‘fork in the road’ moment that set us off on our journey.

The choices we've made and the places we've lived, since finding out Hughan was profoundly deaf, have been life changing for him. I’m writing a book about our amazing story. Of how we moved from Zimbabwe to Botswana to Cape town then back to Zimbabwe before finally moving to England and how Hughan learnt to hear at the age of nearly 4 and therefore only learning how to speak at the age of nearly 4 to being able to hold a conversation on the phone.

I’d really appreciate your feedback on my book. It’s not finished yet but will be in the next year or so. I have got a small sample that I’ve written at this point and I am looking for feedback so if you would like to help me with my book before its published then put your name and email in the form below and I’ll be in touch.

(This picture was taken in 2015 of Hughan introducing a speaker at a conference.)

30 years ago...our youngest son Hughan was usually a happy, content, babbling baby and seemed to be responding to us when we spoke. We were totally unaware he might not be hearing us at this stage.

One afternoon I had been at home with both of the boys. Hughan became quite restless and seemed to have flushed cheeks. I thought he was probably teething so I gave him some Calpol (a liquid form of paracetamol), which usually helped.

Within a short time he became more and more restless and all of a sudden had an excruciating cry, almost frantic. It was as if something was pinching him. I could not find anything wrong with him and felt totally helpless and finding it hard to calm him in any way.

I phoned our doctors surgery in Gaborone and they had already closed for the day. I managed to get through to my doctor at her home and she was happy for me to take Hughan to see her.

Hughan had become exhausted from crying and had started to calm down. The Doctor gave him a complete check over. He had a high temperature, but other than that she could not find anything specifically wrong with him. I was to go back home and see the doctor the following day if he continued to cry and be restless.

When we got back home Hughan fell asleep from exhaustion and slept soundly over night. The following day he seemed much happier and there was no need for me to go back and see the doctor.

We never found out what caused Hughan to have such an excruciating cry that day, or whether this might have contributed towards his hearing loss that was eventually diagnosed months later.