Our daughter was delayed with her speech and we were advised to contact a Speech Therapist. The Therapist then suggested for our daughter to have a hearing test as well as attending a therapy session. We agreed for her to be referred to do the hearing test and also agreed to attend the therapy session with her. Both of us went to the 1st speech therapy session, but for some reason, we realised that our daughter did not have speech problem, comparing her with some of the children who were at the session and also from the way other parents were describing their children’s problem. So, we decided not to go to the next session before we knew exactly what was happening with our daughter.
Finally our daughter was diagnosed with significant hearing loss by one of the well known London hospitals. At the time she was three years old. As parents we were shocked by the news. The Audiologists told us that they would need to do further examinations with the possibility of admitting her to hospital, to see if there was fluid or glue in side her ears which they said could affect her hearing.
On the same day we went to the parents meeting as it was already scheduled for that day. Coincidently, two of her teachers told us that they thought our daughter may have a hearing problem. We shared the bad news with them and also told them about the planned further examinations. We kindly asked them to understand the problem and to provide extra support until something could be done about it.
We also immediately took her to one of the private hospitals for a second opinion and we were told that they thought she had hearing problems.
A few months later she had an operation as part of the examination and it was confirmed to us that her hearing loss was significant and they told us that there was nothing they could do to correct it. They said the only option was for her to wear hearing aids on both ears, for her entire life time. We told the audiologist who performed the brain stem test while our daughter was sedated under general anaesthesia, that our daughter hears us and we had reservations about the outcome of her assessment. She then agreed to do another hearing test a week later. We agreed to that.
On the day of the operation, they measured her ears and the hearing aids were ready when we went back to the hospital a week later for a further hearing test and to discuss about fitting the hearing aids.
Before we went to the appointment we sought advice from other professionals, and were advised to try the Tomatis Therapy. We did not know anything about it, so we googled in the internet and we learn a lot about it. So we decided to try it.
At the follow up appointment for a further hearing test, the outcome was similar and they told us that their assessment and results so far match and they said there was no other remedy to her problem, and they wanted us to decide. They showed us the hearing aids and they also wanted to try them on our daughter. As soon as she saw the hearing aids without understanding what they were, our daughter screamed and refused to allow them to try them on her. We were also disturbed, but in any case we were not going to allow our daughter to wear the hearing aids before we exhausted other alternatives available. The audiologist and the doctors tried to convince us that their results were conclusive and we should accept them and try to help our daughter to get used to the idea of wearing the hearing aids. We told them that we still thought that our daughter hears us. We also told them that what we thought is somehow an attention or a listening problem. They asserted themselves by saying, “we are telling you that your daughter’s ears have problems”. We were still hesitant and we asked them whether they knew about Tomatis therapy. One of the audiologists said, yes, but that is used for children with behavioural problems.
We then requested for more time to be given to us in order to get used to the idea. We asked for six weeks gap and left the hospital.
The next day we took our daughter to the Listening Centre in London for assessment, and a week later she started the Tomatis therapy. Our daughter had a difficult birth, and we were aware any problem could arise at any stage. But, as all her other development was not showing any adverse sign, it was very difficult for us to notice. However, what we noticed were that, she was not sleeping well, she fell down every five minutes, her attention span was very short and she was not focused. Of course as her attention and listening was not good she was not hearing properly, and that also seemed the main problem to her speech delay.
Two days after she started the therapy, she slept throughout the night, and it is still the case. It was a good sign for us, and we realised that the therapy was working. Her behaviour and her co-ordination also gradually improved and she rarely falls down at the moment. We also noticed that her hearing was much better and she was paying attention to what we were saying to her and she started to engage and communicate clearly.
After the first 13 days of therapy, we arranged an appointment to see one of the ENT specialists in a private hospital. On the day, she first did a hearing test she passed without any problem. We were thrilled, but we asked the audiologist if her result was conclusive? She said our daughter hears correctly on both her ears and she also said her hearing is normal. We then went to see the ENT specialist; she asked us what our daughter’s problem was. We told her about everything. She examined her and also talked to her to find out whether she has a speech problem. She then told us, based on the hearing test result and her own assessment; she said our daughter neither had hearing nor speech problem. We then showed her all the correspondences from the previous tests and assessments and she said “it is a mystery”. She said she will write about her findings to our family doctor and she did.
We were very pleased to hear about the outcome. We knew our daughter was making progress, but we wanted to hear it from medical professionals to back up our own day to day assessments.
Six weeks later we went back to the hospital for our appointment without our daughter. When they saw us without her, they were a bit puzzled. We then told them about what happened and showed them the letter from the ENT specialist. They were surprised and in disbelief. Our mission was not to blame them or confront them, but to tell them that our daughter was misdiagnosed and almost subjected to wearing hearing aids for life. We also told them that we think so many children might have been wrongly diagnosed and still wearing hearing aids. So, we told them to learn from our daughter’s experience, and in future to exhaust all the other avenues before they conclude their decision.
As for us we are happy and our daughter is saved thanks to the Tomatis therapy. From the day we were told about our daughter’s hearing loss problem to the time we had the positive outcome, we were tormented emotionally and psychologically. We were worried how our daughter would cope at school and in this world where people pay so much attention to the physical appearances than the personality and well being.
For a short period of time, our daughter also went through hell. The operation was not necessary at all, had we known about the Tomatis therapy before. Anyhow, for us it is the greatest gift we can get. We are grateful for the great work of Professor Tomatis and we thank Ella Williams for making the therapy available at the Listening Centre in London.
We hope many worried parents will benefit from the therapy for many years to come.
E G and E T
15 June 2007