Sounding Off is written by Tiger Mother, mum to moderately deaf Hayley, 17, and her two brothers Lee and Harry. She gives a frank insight into the ups and downs of life with a deaf teenager who has additional needs.
Tiger Mother blogs every month on issues from audiology appointments to exam support to deaf awareness and much more. Follow her progress as the parent of a deaf teenager on Sounding Off each month, and post your own views and experiences.
Tiger Mother says: ‘From the moment you first learn your child has a hearing loss you face a steep learning curve, with all kinds of issues to deal with, including your child’s personal emotional wellbeing and an ongoing battle to fight for what they need to be equal in a hearing world.
She was first diagnosed with hearing loss aged four, due to glue ear. This is a common childhood condition and temporary form of deafness, which is usually helped by grommets until in most cases, the child grows out of the condition in early adolescence.
But Hayley developed a rare complication when, aged eight, she developed a disease called cholesteatoma, a cluster of cells that form a lump which grows inwards from the eardrum, giving off enzymes that erode bone. It can destroy hearing and can have dangerous complications, including infection spreading to the brain.
Between the ages of nine and 12, Hayley has had three mastoidectomies – major ear surgery – to remove the cholesteatoma, which was in both ears and reoccurred in her right ear. It destroyed two of her three ossicles (tiny hearing bones) in her right ear. Her amazing surgeon was able to fashion prosthetic replacements out of cartilage and restore most of the damage.
Hayley is permanently moderately deaf and wears hearing aids in both ears. She will need to have checks for the rest of her life to ensure that the cholesteatoma hasn’t returned.
She was also misdiagnosed with ASD for six years and though she struggles with processing information and social commincation, doctors have as yet failed to diagnose any other specific disorder.
With a child who has hearing loss and additional needs, every stage of their life throws up new challenges, realisations and causes for celebration – this blog is about that journey.’
Sounding Off is brought to you by the National Deaf Children’s Society (NDCS). Views represented in this blog do not necessarily represent the views of NDCS.