As my son was born totally blind, it quickly became ‘our normal’. But despite being told all the possibilities of additional needs Norrie Disease brings, one thing we never mentally prepared ourselves for was progressive hearing loss. Over the months we noticed a change in his behaviour. Going out in noisy crowded places became a huge problem and would quickly send him into a sensory overload meltdown.
It was difficult to manage his frustrations and his severely delayed communication skills were showing no progress. After years of recurrent ear infections and traumatising pain, I began to notice certain sounds were somewhat painful to his ears.
After being closely monitored by audiology every 6 months, we decided to insert grommets – where it was then discovered he had full hearing loss in one ear at the age of 3.
When people learn about his blindness, the first thing that everybody says without fail, is how his ‘super senses’ will compensate for his vision, especially his hearing. But for Cameron the most important sense is touch. Unfortunately having dual sensory loss can prove difficult at times, he is still unable to form communication and language skills and we have to adapt our surroundings and environment to help him reach his full potential.
Every day we live in fear that the progressive hearing loss will affect his other ear before he develops the skills to talk, something I so long to hear. It is a ticking time bomb in the corner of the room just waiting to happen.
The grommets were completely life changing, helping to manage the pain and help keep his one hearing ear clear of fluid and congestion.
My son has to work ten times harder to allocate sounds and process them. He can not see what is making the noise and his hearing is severely affected when there is just too much background noise. Having a multi sensory impairment has caused my son to have very complex additional needs, so much more than just blindness or hearing loss alone.
When one loss accompanies the other, we feel the disability is far greater and much more difficult to overcome.
The Norrie Disease Foundation is developing a patient registry to support pioneering research into the Norrie disease hearing loss.