Inspire - Advocate - Educate

Thursday, July 30, 2015, 15:25 | No Comments »
The transition from sound to acquiring language isn't an easy exercise. It takes time, patience and hard work.
When we started our journey, Kaylin had no language and would grunt or make unintelligible sounds to get our attention.She has made good progress (albeit slow) since then and her vocabulary is expanding all the time. Parents are encouraged to be a part of this transition and during therapy and parent guidance sessions are taught techniques on how to facilitate and support this. Like Jenny , Barbara Kellett has been Kaylin's speech therapist since the beginning and in part has been my therapist too. She has been a great source of encouragement to me and her compassion for the the children and families she supports is evident in their progress and development.

Q. Where and when did you qualify
A. I qualified at the University of Stellenbosch in 1992 with a Bachelor in Speech Pathology and Audiology.

Q. What is your current position
A. I am currently employed by the Cape Town/Tygerberg Cochlear Implant Programme which is the oldest implant programme in SA. I am based at the CHAT centre but funded through Stellenbosch University.

Q. You have been Kaylin's speech therapist for most of her hearing journey, on average how many families do you see
A. It is difficult to say how many families I see as I am employed on a contract basis and am only employed for 20 hours a week... within those hours I see about 4 families a day: either directly in clinic, via telepractice or prearranged home visits.

Q. What do you enjoy most about your job and why
A. I love my work and the uniqueness of every family and every child. I love that no one recipe can be applied but that I have to use my expertise and skill to observe and work out the interplay of so many variables in piecing together each family and each child's own skills so that I can support them in reaching their own unique potential.... no matter what that potential is. It is a cliché but I feel that I grow as much with each interaction as they may.... I truly feel blessed by this work.

Wednesday, July 29, 2015, 16:31 | No Comments »
The month of July is a significant month in our lives. My husband, son and I each celebrated our birthdays; as well as my mom, who turned 80 years old - a blessing! The 29th July 2010 marks the day when Kaylin was 'switched on'.

To appreciate the magnitude of this milestone for Kaylin, allow me to give you some context. A 'switch on' is when the cochlear implant (CI) is activated and the recipient is able to hear, this process is called 'mapping'.First the electrode array and magnet -the internal device of the CI -are implanted into the patient's cochlear (inner ear). A few weeks later, the audiologist fits the speech processor, which is the external device worn on the outer ear.The processor selects sounds picked up by the microphone; and a transmitter or receiver that picks up the signals from the speech processor converts them into electrical impulses. The processor is connected to a software programme in a computer, which is used to adjust the settings and sound levels on the device.Through a series of sounds or beeps, the audiologist can determines the recipient's response to each one, and then sets the thresholds accordingly on each electrode on the electrode array inside the inner ear. The array contains 22 electrodes which stimulates the auditory nerve and sends impulses to the brain which then interprets it as sound. Kaylin however, only has 16 'active' electrodes in her left cochlear – the rest of the electrodes are situated just outside her cochlear. By the time she received her implant, the ossification of her cochleae had progressed at such a rapid rate that not all the electrodes could be inserted. Her right cochlear was completely ossified and could not be implanted. Meningitis as a cause of deafness is really a medical emergency so that implantation occurs as soon as possible in order to try and avoid this.The softest level at which a child can hear is called the 'T level' or 'threshold level', and the upper most level is the 'C level' or 'comfort level'. The T and C levels are different for each child. The audiologist sets these levels and the way that a particular speech processor is set is called a "MAP".

(There are several video clips online of activations and recipients' reactions to hearing for the first time. They're worth a look)

The days leading up to Kaylin's implant and subsequent switch on were stressful, not just emotionally, but financially too. A cochlear implant is very expensive, somewhere in the region of R250 000... EACH! I might be out by a few rands, but I think you get the idea of the cost involved! Even though I'd already been retrenched at that stage, I still had about 3 months of medical cover and we only had to raise about R100 000, still a big sum, but not nearly as frightening as R250 000!

We immediately went into work mode and started putting our heads together for fundraising ideas. The clock was ticking, as we had a short period of time to raise funds. We made as much 'noise' as we could - newspaper articles, a Facebook page, radio, events, whatever we could think of - to raise enough awareness and get as much support as we could. It took a while, but we managed to raise the funds, thanks to generous donations and support from friends and family.
Fast-forward five years and you have an energetic, funny six-year-old, who generously hands out hugs and toothless smiles and who does not allow her impairment to define her. She's just like any other little girl who loves wearing her mom's high heels (I'm always frantic that she'll twist an ankle!), putting on makeup, and watching Taylor Swift music videos! She loves puzzles, plays with her Micky Mouse doll and helps me bake chocolate muffins. Kaylin especially likes to lick the baking bowl and spoons. Who doesn't, right? She loves school, adores her teacher and goes to ballet class once a week with her class mates. I have come to learn that her impairment only limits her hearing, NOT her potential.

Happy five-year hearing anniversary, my love! Don't just reach for the stars, seize it.

Tuesday, July 28, 2015, 19:36 | No Comments »
The journey to sound does not end when the CI or hearing aid is switched on. The road to language and speech acquisition is a long one and it takes a team of dedicated professionals to assist and support the recipient and the family.Since we started our journey 5 years ago we have been blessed and privileged to have an incredible team who have walked this road with us.
One of the members of this passionate team is Tygerberg audiologist Jenny Perold. Jenny has been Kaylin's audiologist since her diagnosis in March 2010 and has been witness to Kaylin's continued progress. Jenny shared some of her thoughts with me and allowed me to share them with you..

Q. What is your current position/title at the Cochlear Implant unit?
A. Coordinator and audiologist

Q.What do you enjoy most about your job
A.Being in a position to be part of making a positive difference in someone's life

Q. What is the one aspect of your job you would like to change (if any)
A. Funding limitations and the challenges poverty brings to families who have hearing loss. Access to funding for more audiology and speech therapy posts and for Tygerberg Hospital's entrance to look better!

Q. What advice would you give to a parent/s who suspects their child/ren may have a hearing loss
A.Don't delay in getting access to the best technology and intervention by skilled professionals which will provide enough access to sound so that the auditory areas of the brain can develop and provide the foundations for the development of spoken language

Wednesday, July 22, 2015, 19:21 | 3 Comments »
TodayI would like to dedicate this post to my son, Daniel. He's not hearing impaired, so you're probably wondering why I'm doing so. Well, he's the one person who I feel got the 'short end of the stick' during this wild 5-year journey we've been on.

I remember the day I found out I was having a baby. I had suspected that I was pregnant for a few days and couldn't wait to get to a doctor, so I decided to take a home pregnancy test in the office bathrooms. A colleague walked in and I told her what I was up to. She waited with me while the minutes ticked by. Two pink stripes later, it was positive! I wept with joy as we hugged, giggled and cried together like two high school girls in a locker room. I was overjoyed. A few hours later I was in the pathologist rooms waiting nervously for my blood test results. It was confirmed, I was pregnant. I surprised my husband with the news by sealing the test results in a brown envelope, pretending I'd just collected the mail. I can still see the big grin on his face, as he smiled with pride when I told him he was going to be a dad.

Daniel entered our lives on the 24th July 2004 at 10:49am, weighing 2.97kg.

The first few weeks were difficult, adjusting to being a first time mom and trying to cope with post-baby blues. No amount of reading could've prepared me for the reality of having a newborn baby. I was overwhelmed at times by the inevitable demands and fatigue. Daniel battled with colic at first. Othherwise, he was a happy and healthy baby and I soon adjusted as we settled into a routine.

When I returned to work, my mom looked after him until he turned three; thereafter he went to a daycare facility. He still talks about his time at St Luke's, and the friends he made there.

For four years Daniel was an only child, lapping up all our love and attention.He'd settled into a safe little bubble with just Mom and Dad. So, when we told him that he was going to be a big brother, he wasn't too happy. Understandably, his perfect little bubble was about to be disrupted. He made it very clear that if he was to be a big brother, the baby had better be a boy!

                                                              Daniel age 4

A few short months later he received an unwelcome surprise when he found out he was going to have a little sister, instead. "I don't want a sister, why do I have to have a sister? I want a brother!"

Once Kaylin was born, he soon got used to the new arrival and was intrigued by this tiny human being who'd entered our lives.And that's when our son's journey began. He was no longer the centre of attention. Not only did he have to share his mom and dad, he also had to make room in his bubble for one more 'occupant'.

Four months later, I'd just returned to work from maternity leave, when our little world was shattered (for Daniel, a second time; only, this was truly bad news). My husband and I can't remember whether it was a Wednesday or Thursday afternoon, but we both agree that it was in June 2009, when I called my mom (who took care of Kaylin while I was at work) to ask her if she could work 'overtime' as I needed to run an errand after hours. She told me that I should come home straight away, that Kaylin had a high temperature and wasn't feeding.

I arrived at my mom's place to find Kaylin lethargic, and feverish. I immediately called my husband and told him what was happening and that I was taking her to the hospital emergency room. A few days later, after she'd been admitted to hospital, we were landed with a chilling diagnosis.We now had to explain to Daniel that his baby sister was very ill and needed to stay in hospital for a few days, so the "clever" doctors could take care of her.I'm not really sure whether he understood. Besides, I was too frantic for Kaylin's wellbeing to have noticed. From that moment on the hospital ward became my 'home'. The kind nursing staff would sneak me in and allow me sleep in the spare hospital bed in her room. Of course, this wasn't allowed and I had to be careful not to get caught by the senior nursing staff. I bought food at the cafeteria and watched TV in the waiting room. I did countless crossword puzzles while sitting in the lazy-boy chair alongside her bed. When I felt fearful and alone, I cried. When I needed comfort and strength, I prayed. I witnessed eight of her nine seizures and watched as the nursing staff stuck needles into her arms. It was terrifying. All the while I had a little boy at home who also needed his mom to take care of him, and tuck him in at night.

The hospital policy dictates that no children are allowed in the ward during visiting hours.So,Daniel would sit in the waiting room, my husband and I taking turns to stay with him. Of course, this meant that he couldn't visit his sister and had very little time with me. As soon as visiting time was over, he'd leaveto go home with my husband, while I stayed behind to spend yet another night in the hospital ward. I can only imagine how confused he must have been.

After Kaylin was discharged we tried our best to get back to our life, picking up where we'd left off. My husband and I returned to work and Daniel returned to the daycare facility. We were a family again.

Nine months later, my mother alerted us to the fact that Kaylin wasn't responding to sound, again Daniel had to 'step aside' while his sister received the attention. In the midst of all the hearing tests, scans, implant, therapy sessions and fundraising, there was my little boy, 'lost' in all the mayhem. I tried my best to find a balance between taking care of two kids, and taking care of the home. In the chaos of my emotional state, the bond I'd had with my son became strained. He started 'acting out' - one minute he was this loveable, respectful little boy, the next I was the worst thing that could have happened to him.

It took me a great deal of reflection before the 'penny dropped'.And when it did, I was devastated. I realised that, even though I attended all his karate classes, cheered at his swimming galas, comforted him when he had a bad day and helped him with his homework, it wasn't enough to make him feel that he too mattered. He tried to get my attention, even if it was negative attention, as long as he felt that I cared enough to notice.

In September last year I showed him a newspaper article that had been written about Kaylin. He asked me if her hearing loss was "forever", whether he ears would "get better". I then realised that I never explained to him how his sister lost her hearing and what a cochlear implant was. All this time it hadn't occurred to me to include him on our journey. He'd always been a spectator, standing on the sidelines.

I've come to realise how important it is to include all members of the family on a life-changing journey like this. A family is a unit, and if one 'suffers', everyone is affected. I never realised that Kaylin's illness and hearing loss diagnoses would have such a profound effect on my son. I'm grateful that I made this discovery while I am still able to do something about it.

Though poignant and personal, I felt I would share this letter with you that I gave to my son.

A letter to my son

Dear Daniel, on the eve of your eleventh birthday, I want to say, I'm sorry. I'm sorry for all the nights I spent away from you, when you needed me to tuck you in. I'm sorry I didn't give you a hug when I was so caught up with my own emotions. I apologise to you formaking you feel that you didn't matter, or that you were not loved. You are my heart.
I want you to know that I see you. I see the soft-spoken, shy, gentle and funny young man you are becoming. I see how proud you are each time you do well in school. And even though you complain that your sister annoys you - and you get angryeach time she takes your favourite toys - I see the love you have for her and the concern and compassion you show each time she gets hurt, or cries.
I see you when you smile. I see you each time you feel sad. I see you when you are engrossed in your favourite book, or playing your favourite game. I see you even when we have disagreements -,and we have lots! I do SEEyou.
I want you to know that mommy loves you and that YOU DO MATTER.

With all my love,

Thursday, June 4, 2015, 16:21 | 1 Comment »
With just a few seconds before the evening programme was due to start, I whispered to my husband, "I can't do this, let's go home". I surveyed the room for familiar faces and spotted a few amongst the crowd of about 70 guests. I panicked, butterflies were doing back flips in my stomach and I was ready to kick off my high-heeled boots and escape into the dark of night, to the safety of our car. But there was no getting away from it, after all, I had committed to doing this, my name was clearly typed in bold white lettering at the top of the event programme, 'Programme Director : Jonene Johnson', that's me and I had to step up (pun intended).
May the 21st was Diversity Day. A United Nations-sanctioned day, celebrated worldwide as an opportunity for communities to engage around issues of cultural difference and acceptance.
To commemorate this day, two non-profit organisations, The National Council for Persons with Physical Disabilities in SA (NCPPDSA) and the Association for Hearing Loss Accessibility and Development (AHLAD),teamed up to raise awareness of the diversity within the group of persons with hearing loss. These two groups are working together to lobby government to implement legislation that will ensure that the rights of persons with disabilities are upheld and are striving to make public places like theatres, restaurants and educational institutions more accessible for persons with hearing impairments, by urging them to install loop systems.

Guest speakers on the programme included, Therina Wentzel, director of the NCPPDSA; Michele Tonks, chairperson of AHLAD and Western Cape chairperson of the South African Association of Audiologists, Tersia de Kock. The audience was spoilt with a musical treat by long time friend and supporter, Jannie du Toit, who was accompanied by principle cellist with the Johannesburg Philharmonic Orchestra, Susan Mouton. Alwena van der Vyver, owner of the Metronome Theatre, where the event was held, joined her friend, fellow artist and performer, Marie du Toit on stage for a magical evening of music and song.

Sitting on the edge of my bed one April evening, I was scanning my text and e-mail messages on my phone and opened an e-mail from Sandra Maritz, Public Education and Awareness Officer from the NCPPDSA. While reading her e-mail, I was suddenly overcome with laughter. She had messaged me with details of an event for May 21st and asked whether I would consider being the host. There was nothing funny about the e-mail, of course, but my sudden outburst was fuelled by the shock at having been considered for a task that I've never done before and something I never imagined I would ever do. My reaction got the attention of my husband who was just as surprised as I was! "Do it", he said. "Are you insane?" was my instinctive reply.

So there I was, up on stage, doing my best not to stumble over my words and make a fool of myself, whilst trying to do a fairly descent job. From the moment I opened my mouth, I went completely off script, which of course sent me into a complete panic, rattling off words that I hadn't rehearsed. Then, there were a few last minute changes to the programme, which didn't help my already shattered nerves! But once my nerves settled and there were no more butterflies, I managed to get on with it.

Photo : Sandra Maritz
                                              Photo - Sandra Maritz

I was so proud to be part of this event and being up on that stage reminded me of how far I'd come in my healing. I took a risk – my directing of the programme could've been a complete failure, that could've led to me never being considered for an opportunity like this again. But it was so worth it! Our children are the adults of the future and who else is going to support and advocate for them, if not their parents? Everything I'd done up until that point had been for and because of Kaylin. And I will continue to support her, even if it means stepping out of my comfort zone.

An Induction Loop System allows users with a telecoil function on their hearing device or a user wearing an induction loop receiver, access to sound transmitted through a magnetic field, without the interference of background noise. Imagine, just for a moment, that you have a hearing impairment and you'resitting in a noisy restaurant with family and friends, celebrating a special occasion, but you're unable to join in the conversation because you can't hear what is being said above all the background noise. The experience will leave you feeling completely isolated. There are only a handful of venues, in SA, including the Metronome Theatre, have these systems installed!

Examples of other services which are absent from work place environments and institutions are sign language and lip speaker interpreters; assistive devices like visual alarms; adequate access to information like sub-titles during business presentations or lectures; and workshops for educators on how to make a classroom or lecture hall more "user friendly" for learners with hearing loss.
As a parent of a child with a hearing impairment, I understand the importance of inclusion and acceptance within our society, not just for persons with hearing loss, but for all disabilities. As a testament to that, the programme at the event that I was directing was available in Braille and sign language, and lip speaker interpreters were at hand to ensure that all guests felt part of the proceedings.Over the last few years I have come to appreciatethe immense value of education, awareness and family support. I'm passionate about supporting families, which is why I am so grateful to be volunteering at Kaylin's school.

We've all heard the old adage, "when life gives you lemons, make lemonade". Well,that's exactly what I'm trying to do -giving back and being grateful for all the support we've received, and continuing with my healing by making sweet lemonade!
I've been asked to tell our story at a function later this month, and I will most likely feel the urge to run a mileagain, but hey, anything worth fighting for, is worth the risk!

Click here for the media article.

Thank you for taking the time to read this post.

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