'Deaf education is failing our children': Mom of three shares the difficult path to diagnosis

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Statistics show that in South Africa the process between a mom saying 'hey, something's not right,' and it being identified is up to 16 months.
Statistics show that in South Africa the process between a mom saying 'hey, something's not right,' and it being identified is up to 16 months.

In South Africa, like everywhere in the world, people don't ordinarily think to check whether their baby can hear or not. 

Deafness is the last thing you think about.  It only enters a parent's radar when you notice your child is not talking past what is considered a comfortable delayed stage. That typically happens between the ages of two and three years old.

The health system fails to safeguard these children by not testing hearing at birth.

I have three children. My twins were three when their hearing impairment was identified. 

My youngest was 20 months old.

The twins were about two and a half when I started getting worried. Everybody told me I was being paranoid, but I could see the difference in the language ability of our twins and the child of close friends, who were born a week apart.

I set up a telephone consultation with an audiologist to talk through my concerns. In the end, she concluded that all they needed was some speech therapy. 

So, I got someone to work with them while I was at work. I worked with them when I got home. 

There was no progress.

Then one day, close to their third birthday, we were in Johannesburg for a course.

I was quite excited about having them engage with people they had never met before. For the two weeks that we were there, they were at a little creche. 

I asked the lady at the creche to keep an eye on them because I wanted to know If she noticed anything different about them.

I didn't prime her with information, but I did want her professional opinion. I can remember being distracted for those two weeks while on course, hoping for an answer.

On our last day, she said our children were just like any of the other kids. But two hours later, I knew she was wrong.

We were paying for our accommodation. I could hear one of the twins crying. She had tried to follow me and got lost somewhere in the garden. 

I could see her, so I went outside and shouted her name, but she didn’t turn. 

I thought she couldn't hear me because she was screaming so loudly, but even when I went right behind her and shouted her name with every ounce of possible strength that I had; she still didn't turn around. 

She only turned around when I touched her shoulder. She was so happy to find me. That was the moment I realised she was deaf.

We had them formally tested, and it was confirmed. 

ALSO READ | Children with hearing problems: why acting early can make all the difference

'I was beside myself'

That same day, we resigned from our jobs, and we moved. We rented a place we'd never seen. We had been living in a rural part of KZN, and so we made these huge decisions to get closer to the city so we could get help.

After about four months of our move, I noticed that my younger one wasn't saying the number of words she should have been. I remember going to the audiologist and asking them to test her. 

They said I was being paranoid because of the twins, but they tested her when I insisted and said her hearing was fine, though I could tell they were having trouble with the machine.

I was beside myself knowing that my child couldn't hear. Two days later I found another audiologist who retested her. She failed the test. It was a hectic four months of finding out that all three of our kids were deaf.

I decided I wasn't going to waste another day. We got them all hearing aids. I started learning sign language and put them in a school for the deaf. I immersed myself in that culture and in that language.

Three weeks after starting to learn sign language with them, we needed to do some shopping. It started raining as we got there and so we all got a little wet. 

I had all three of the children in a trolley and we were inside but one of them started freaking out. I needed to do the shopping, so I used the few signs that I knew. I asked her 'what?'.

We were learning sign language together, so she knew 'what'.  She said to me 'shoes wet'. I took them off, and we carried on shopping. That was the moment I realized how priceless being able to communicate with your child is. 

Nothing can beat being able to say to your child: "I understand you".

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'Opportunities for deaf children are completely skewed'

We need to fix the medical system so that babies are tested at birth. Research shows that if babies are identified at birth, and interventions are put in place before the age of six months, a deaf child will develop on par with a hearing child.

Your brain is wired for language development up until the age of three, after that it becomes much harder.

Statistics show that in South Africa the process between a mom saying 'hey, something's not right,' and it being identified is up to 16 months. 

This means a diagnosis, typically happens between the ages of three and four. That's exactly when you've missed the brain development term for language. 

Some statistics suggest a deaf child leaves matric with the literacy level of grade four. Because literacy is so low, many school subjects that are offered to every other child in a mainstream school are not offered anywhere in South Africa at a school for the deaf. 

There is not one school for the deaf in South Africa, for example, that offers physical science. So, a child at a school for the deaf in South Africa can't be a doctor, or a vet, or an engineer. 

Opportunities for deaf children are completely skewed in terms of equity and equality.

The sad thing is that the kids aren't even aware of this discrimination until they get out of school, and they start to ask why wasn’t I allowed to dream? Why did I just accept this?

Parents don't know any better either. I did not know this. When I went to a school for the deaf, I was so relieved to find a place where there were other children like my child, and that point of identity is important, but I had no idea how fractured the system was. 

Deaf education is failing our deaf children.

Educating deaf children whether it be at schools for the deaf or mainstream setting requires mobilizing the Department of Education to better understand hearing loss and creating equal opportunities for deaf children. 

This can only be fully realised when deaf babies are identified early and given early intervention, and families are supported to communicate and understand their deaf child from day one. 

Intersectoral collaboration is vital.

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