My Family’s Personal Journey with Hearing Loss

My sister’s hearing loss is what started all of this off for me.

Hearing loss robbed my parents their dream of having a child they could talk to, who could talk back to them during those early years. Hearing loss dealt us a heavy blow.

Yes, we grieved.

But, we heightened our resolve and we rallied behind this precious life that was living in silence.

My sister’s hearing loss become the start of my journey. 

Hearing loss has made us appreciate that there is still fullness of life in spite of hearing loss.

That the human soul has needs beyond our ideas of loss of fullness because of a (perceived) disabilities.

Hearing is not and should be what defines a person.

It has been a journey of the coming of age for my sister, but also for us.

Ten facts about hearing loss you should know

  • Fact 1: There are around 360 million people with disabling hearing loss.
  • Fact 2: Unaddressed hearing loss poses a global cost of $ 750 billion international dollars.
  • Fact 3: Thirty-two million children have disabling hearing loss.
  • Fact 4: Chronic ear infections are the leading causes of hearing loss.
  • Fact 5: Nearly one in every three people over 65 years are affected by disabling hearing loss.
  • Fact 6: Noise is a major avoidable cause of hearing loss.
  • Fact 7: Hearing loss can be caused by occupational noise and the use of ototoxic medication.
  • Fact 8: People with hearing loss can benefit from devices such as hearing aids and cochlear implants.
  • Fact 9: Sign language and captioning service facilitate communication with people who are deaf and hard of hearing.
  • Fact 10: Sixty per cent of childhood is prevented through public health action.

                                                                                                                                                              World Hearing Day, 2019

My family's personal journey with hearing loss

Achieving speech (and language) goals for the hearing impaired

There are immeasurable benefits of early diagnosis and fitting of device to how well your child will achieve their speech (and language) goals. Hearing devices however are a small part of the habilitation journey.

Appropriate and intensive speech therapy is the key to getting your child to use the listening skills made possible through their hearing devices and developing speech that is easy to understand.

Please visit this post to learn all about speech therapy.

Should developing your child`s speech skills be the ultimate goal of their communication journey?

I see parent struggling to acquire cochlear implants for their child who is advanced in age (4,5,6 years old,etc.), who has been aided, and for whom, the implants may not result in their desired outcome – a person who relies on speech and listening to navigate the hearing world.

Speaking and listening as a primary mode can however be a reality for the child who became aided or implanted early- below 2 years and who has access to quality speech therapy and education. 

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The danger of Hearing aids

Are the rest then fated for a world of silence? Absolutely no, but parents if are not careful, their very intentions for their child may end up never being realised if they act on emotions.

I”II explain……

When an older child (above 4 years of age) is implanted or aided (hearing aid) for the first time, i.e. had previously used any adequate devices and haven’t developed any useful language skills, this child will in fact  struggle to establish listening skills as their primary mode of processing language because this was not established early.

You find that a child who has hearing impairment very quickly realises that vision is much more reliable in accessing information and this continues even when they are fitted with devices because you need auditory training (speech therapy) to retrain your child’s brain to relying on their newly established hearing skills.

Is there a marked difference between a person without amplification (devices) and spoken language; but perhaps sign language and one with amplification, but has not had habilitation;. so has no understandable spoken language and definitely no sign language?

My personal journey with hearing loss

Shifting the focus from “speech” to communication

Parents need to shift their attention to the importance of communication (establishing their child’s understanding and ability to express themselves) and not just focus on “speech”.

Parents need to realise  that language and speech are not mutually exclusive, if anything, if you were to have one, it’s better to have language expressed in whichever form (signed/spoken) than just have great speech, but not  enough words to express using the speech skills.

My biggest fear is that if parents are denied appropriate counselling on what choices to for their child,

And expensive solutions (like cochlear implants) are  the ONLY ones hailed as THE ultimate solutions….

Irrespective of whether they would specifically benefit the child’s unique circumstances (age, severity of hearing off, previous language skills, e.t.c).

Many children stand the chance of being MARGINALISED in terms of their ability to communicate and function in society.

And how unfortunate that the parents with more economic empowerment end up unable to alter  outcomes for their own children.

After being rightly put off by the government institution for deaf due to their lack of resources, they opt to take their child to private mainstream schools, which present less stigma, show some compassion and promise to deliver.

3 years on, yes, their child is in “good” school, but what is so obvious is that they have no gains in way of communications and literacy.

My family's personal journey with hearing loss

Why speech therapy should be the main focus for those with hearing loss

So they learn of this miracle cure -Cochlear Implant and feel it’s the least they could do.

Helter skelter … fund -raise, secure a loan and you’re able to get cochlear for your child, but you soon realise that more is needed of you-your child does not automatically start talking.

Meanwhile, the hearing-impaired children from less financially-able parents have no choice but to remain in those under-resourced schools. 

There though, their children are taught how to communicate through sign and although they don’t  talk, they understand and communicate, they also learn how to read and write and in the end become literate. 

Some of them even go to college and those who don’t still manage to find a job and become independent members of the society.

Which of the 2 groups of children will enjoy the quality of life?

Imagine your children not fitting in a hearing world and neither fitting in the “deaf” world!

If habilitation (speech therapy) is not the main focus for HI children whose parents have opted  for the oral/aural approach, they will end up as adults who have not mastered  how to speak or how to sign and in essence become marginalised.

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Hi, I'm your teacher

Lorna Muthamia-Ochido

I run a family-centred speech-language therapy clinic, the largest in East and Central Africa. I’ve helped 15,000+ children optimise their communication outcomes (in other words, I make children smarter ☺).

Get your child talking in no time.

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