If you had asked me a couple of years ago, if I would be on television sharing personal information about our family, I would have laughed at you. Told you, you had the wrong person, but here we are.

Last night, Kwêla, an Afrikaans TV show in South Africa, aired an interview with us. We, my husband, Daniel and I shared a bit about our journey with Oliver and I got to share about how that led to the creation of Olipop Toyshop. We also had the privilege of having Oli’s speech therapist, audiologist and Ouma (grandmother) join us and say a few words.

I had no idea what the impact would be of doing this interview. On us, on family and friends, extended as well as immediate. Other parents of children that are deaf or hard of hearing or perhaps even another type of diagnosis. Professionals working within the field of hearing loss. Complete strangers that took the time to just send a message, email or Whatsapp and thank us for sharing our story.

It’s brought back a lot of emotions from the initial diagnosis, but also made us realize how far we have come. Hearing about Oli’s initial hearing loss as Daniel put it, “we were devastated.” We were also so ignorant and naive as we didn’t know anything about hearing loss. We didn’t know about the varying degrees of loss, the modes of communication, the hearing technologies available, the Deaf culture, nothing. Almost four years later, we don’t claim to know everything but we know our story and journey that we have walked. It has become rather apparent that there needs to be more awareness on hearing loss not just for other parents and families experiencing this BUT for all.

This is the fourth September, the fourth Deaf Awareness month that we have celebrated and the third year that I am even aware of what this means.

This year has hit a lot harder and differently to the previous years. The first September and Deaf Awareness month Oli was 3 months post cochlear implant surgery. We were in thick of our therapy and just so excited. The second September, we were getting ready to immigrate to the U.S. During this time I became so much more aware of what Deaf Awareness actually meant. The resources that were available in the U.S. were astounding. Last September, we were back in South Africa and I was searching. For what, I wasn’t really sure, but it just felt like I, no we needed more.

This September, this Deaf Awareness month, I spent the month watching the most informative panel discussions that were hosted by the @Wits Centre for Deaf Studies. The topics covered from South African Sign Language, d/Deaf culture, deaf/blind information, Deaf advocacy, Deaf art and interviews of the most incredible people. Some of these people were Deaf, many used South African Sign Language, some used hearing technology and some used a combination. Then there were the hearing individuals working alongside and together with members of the Deaf community, it was so inspiring.

On Saturday, September 30, 2023, the Wits Centre for Deaf Studies hosted a fun day. We unfortunately couldn’t attend as Oli wasn’t feeling great but I will absolutely be there for the next one. This last month, I have realised that there is a whole community that I was not aware of present in South Africa, literally just down the road from us. A community that realises that there is no right or wrong way to navigate the journey of being hearing parents to a deaf child. A community that is willing to mentor us and guide us.

I would like to clarify that during our journey we have never been told by any professional, that has crossed our path that there is a right way or wrong way. Each one has worked within their frame of reference, within their expertise and for that we as a family are truly grateful. As Oli gets older, I have realised that I would like him to meet other Deaf community members. I want him to be exposed to people that are just like him, perhaps also cochlear implant users, hearing aid or BAHA users, South African Sign Language users, cued speech or perhaps a combination. I want him to see that he can grow up and do whatever he sets his heart and mind on, knowing that being Deaf is not something that should stand in his way, in fact, it just makes him more unique and a bonus extra superpower.

The Five, scratch that, Eight Sensory Systems and Their Impact on Deaf or Hard of Hearing Children

Our sensory systems allow us to perceive and interact with the world around us every day. We’re all familiar with the five senses – sight, hearing, taste, smell, and touch – but did you know there are actually eight? Deaf or hard of hearing children often face unique challenges in their sensory experiences. Understanding the eight sensory systems and how they may affect these children is essential for providing appropriate support and intervention.

Let’s explore each sensory system and discuss examples of how they can impact a deaf or hard of hearing child.

1. Visual System:

The visual system is responsible for our sense of sight. It enables us to process and interpret visual information, allowing us to perceive colours, shapes, and depth. With children who are deaf or hard of hearing the visual system often plays a crucial role in compensating for the absence or reduced auditory input. For example, a deaf or hard of hearing child may rely on lip-reading, sign language, or visual alarms to comprehend spoken language or respond to auditory cues.

2. Auditory System:

The auditory system is our sense of hearing. It allows us to perceive and interpret sounds in our environment. While deaf and hard of hearing children may have limitations in their auditory system, it is important to note that they some children can perceive certain sounds through hearing aids or cochlear implants. These devices enhance their ability to hear and interpret sounds, which can positively affect their spoken language development and communication skills.

3. Tactile System:

The tactile system refers to the sense of touch and provides valuable sensory input for deaf or hard of hearing children. They may use touch to communicate, such as through sign language or tactile sign language, which involves feeling the shape and movement of hands and fingers. Tactile input can also be useful for alerting a child to important information, such as vibrations to indicate a doorbell or phone ringing.

4. Vestibular System:

The vestibular system is responsible for maintaining balance and spatial orientation. Deaf or hard of hearing children may experience challenges in this system, which can impact their coordination and ability to navigate their surroundings. For example, a child with a hearing loss may rely more on visual cues to maintain balance and may benefit from additional support in developing their vestibular system through activities like balance training.

5. Proprioceptive System:

The proprioceptive system provides feedback about body position and movement. Deaf or hard of hearing children may rely more on their proprioceptive sense to compensate for the absence of auditory input. For instance, they may rely on the vibration or feeling of the floor to detect someone approaching behind them.

6. Gustatory System:

The gustatory system is responsible for our sense of taste. While the sense of taste is not directly affected by deafness or hearing loss, it is important to consider that deaf or hard of hearing children may have reduced access to auditory information related to food, such as sizzling sounds or the sound of boiling water. These children may rely more on visual cues, such as observing the changes in colour or texture of food to determine its readiness.

7. Olfactory System:

The olfactory system relates to our sense of smell. The olfactory system, or sense of smell, is not directly impacted by deafness or hearing loss. However, it is worth mentioning that deaf or hard of hearing children may rely more on their sense of smell to detect potential dangers, such as the smell of smoke or spoiled food, in the absence of auditory cues.

8. Interoceptive System:

The interoceptive system refers to the perception of internal bodily sensations, including hunger, thirst, pain, and body temperature. Deaf or hard of hearing children may rely more on their interoceptive sense to understand and respond to their bodily needs, as they may have limited access to auditory cues related to these sensations.

Understanding the eight sensory systems and their impact on deaf or hard of hearing children is essential in creating an inclusive and supportive environment for their overall development. By recognising the unique challenges faced by these children in each sensory domain, educators, parents, and professionals can tailor interventions and strategies to optimise their learning, communication, and overall well-being.

Sources: http://northstarcounselingcenter.com/sensory-dysregulation-in-children

When Oli was initially diagnosed, I remember Frikkie, our audiologist mentioning something about technology being amazing nowadays.  In those moments, I genuinely had no idea what he was talking about. I knew what a cochlear implant was but didn’t know when they were used, in the sense of what kind of diagnosis would warrant them. In fact, in my ignorance, I just thought, his loss is profound, that means he can’t hear, he’s deaf.

After countless hours of research online, contacting audiologists worldwide and talking to many parents who have been through a similar journey, I understood what Frikkie meant. There is amazing technology that can give Oli access to sound. There was a lot of advice given from parents who had been through this part of the journey, explaining their everyday life and how that had changed. Remembering to charge batteries, check and change mic covers and sound checks was the very mechanical aspect of it. Keeping the devices on him, making sure they are working properly and giving the brain access to a language rich environment was where our work began.

We were really lucky that Oli has liked his implants from an early age. We did also start slowly with wear time and worked our way up to all waking hours or the idea of “eyes open, ears on”. I think getting aided with hearing aids at such a young age had something to do with it.  He didn’t really know anything else.
In the beginning our sound checks meant just making sure he could detect the sounds, which was easy to practice. Then came making sure to provide a language rich environment. This was truly the hard work, you are pretty sick of your own voice by the end of the day. Narrating everything you do, gets exhausting but today we can see how it has truly benefited Oli.

On the Hearing First website, they have a lovely article that lined up with exactly what we were told by both our audiologist and speech therapist in those early days.

–       To make sure Oli’s hearing aids or cochlear implants were working properly.

–       To be aware of Oli’s daily listening checks and keep track if any of the sounds were difficult for him or that he didn’t even detect.

–       Lastly, to work towards him wearing his cochlear implants for at least 10 hours a day.

Today, we manage all these pretty easily as it has become part of our everyday life. As a result, once Oli goes to bed, it often means Daniel and I don’t talk much. This isn’t every night. I suppose you can say when his ears come off at night my voice and my ears also get to rest a bit. And now that he talks so much, it seems his voice and ears, or rather his brain, get to rest too.

Implantation done, switch on or activation done and now Oli can hear, right?
He hears just like you and me now, so what’s the stress? I can’t tell you how many times we have had to answer these questions!

Getting a cochlear implant is not a cure or a quick fix. It doesn’t mean that Oli immediately understood or could comprehend everything he heard after switch on. Getting cochlear implants or using any hearing technology means working hard to comprehend what is heard.

In one of our first Auditory Verbal Therapy visits with Jenni our speech therapist, she said to us, “we hear with our brains, not our ears”.  Professor Carol Flexor, a very well-known Educational Audiologist and Auditory Verbal Therapist uses the analogy of hearing loss being described as a “doorway issue.”  What does she mean by this? Simply put, the ears are just the doorway to the brain for sound or auditory information.  So, the purpose of using hearing technology such as cochlear implants, hearing aids or bone anchoring devices is to get the auditory information through the doorway and to the brain.  The brain has to do the hard work and perceive what we are hearing.

So how could we help the brain to hear? We attended Auditory Verbal Therapy sessions, where we learned techniques that we could use as parents or caregivers to make sure that Oli is surrounded by a very rich, spoken- language environment. This has and still involves lots of narrating, family centered play, singing and reading aloud. Especially in the beginning, there is really very little quiet times in our house while Oli is awake. As he gets older, he seems to be doing more of the talking, for which we are very grateful.