Mr Bean

From very little, our girls have LOVED Mr Bean –  both the animated and traditional versions. I watched an interview with Rowan Atkinson recently, where he explained that when creating Mr Bean, the intention was to appeal to a global audience and thus breach the complexity of the multi-linguistic needs across the globe. With that in mind, a comical, extremely expressive and rather gestural endearing, Mr Bean, was born. What I’m not sure of however, is whether there was any consideration at the time, of the wide appreciation of this character to people with a hearing loss. With most of the script being exclusively visual, deaf and hard of hearing people are engaged at an equal state as any hearing viewer. Not something that usually happens without subtitles. And for our three, he is the beloved Mr Bean, and a guaranteed first request when offered the opportunity of screen time entertainment.

We’ve now been on our journey as knowingly and intentionally parenting deaf children for five full years (it feels a whole lot longer).  Over the last three years, we have welcomed into the family, 6 cochlear implants. The final one being implanted quite recently. Whilst service providers and professionals spend their energy on the finer technical and operational details of the process and procedure, whilst parents consider the practicalities, risks (which always feel stressful and bigger than the reality – as much for the sixth implant as for the very first), the little person due to be implanted, is often thinking about what their new processor will look like. Well that’s certainly been the case for my three.

“Mom, can I have Mr Bean on my new processor?” she asked, her big blue eyes sincere with this rather unusual request.

Knowing that the choices for covers are generally quite limited, but also appreciating that on this journey, having the buy in from the child and embracing their excitement as half of the win, I agreed that Mom would make a plan!  I wondered where on earth I was going to find Mr Bean stickers. An important part of this journey for us, is learning to make a dream come true by creating that reality ourselves. We find ourselves in that very predicament regarding their education, and with the endless barriers that people with a hearing loss face daily, I want my girls to grow up having an “it can be done” attitude to every “impossible” situation. We have never been all that impressed with the “blend it in” colour coordination of hearing aids or cochlear implants. Each to their own, but our family has chosen to embrace this journey whole heartedly. We are not ashamed of their hearing loss, not ashamed of their equipment, and in actual fact, have found it helpful for people see there is a “difference” so that any accommodations can be made sooner than later.

I was very privileged to be in Geneva mid-year to attend a World Health Organization stakeholders’ meeting. It was a rather humbling experience for me as I spent two days with people who I truly appreciate, have a heart for making the world a better place for those who are deaf. I saw that there was a Med-El representative present, and introduced myself, joking that I had “shares in the company” considering we were about to invest in our 6th implant. The conversation led to me discussing our journey thus far, and how each child was really thriving. As the conversation was rounding off before the next meeting session was about to begin, I commented tongue-in-cheek, that I did have one complaint to relay from a 6 year old. Mr Bean processor covers were not evident in the online catalogue!

Two days later, I received an email to say that Mr Bean skins especially made for my little princess, were going to happen! In that moment I thought about myself as a medical professional as well as the many other professionals out there who have the daily privilege of entering the worlds of so many people who dare to make themselves vulnerable. So often, we overlook the little details. The single most heartwarming thing that has happened on this particular CI journey was not the switch on, but rather having someone appreciate the wish of the little recipient to have her hero, Mr Bean, on her ears every day.

Chatting to a medical friend about this, she shared one of her experiences, managing a patient with a severe brain injury in ICU. Weeks and weeks of intensive management and complex medical care, saw this young man miraculously recover. When he woke up from his coma, he asked for macaroni and cheese.  Again, a small detail that someone made happen, sprinkled the sparkle on an already heartwarming story.

Macaroni and cheese and Mr Bean, likely wouldn’t have made the clinical notes at the bed side. They are not details which would have been presented on a ward round, but they are details that mattered very much to the individuals being managed.

Eden received her Mr Bean processor last week. As she saw her dreamed up design for the first time, she screamed over and over – “Mr Bean! Mr Bean!” and embraced her little red processor tightly, whilst rocking side to side, as if hugging a tiny teddy bear.

Thank you to those who make special things like this happen! Thank you for seeing beyond the cochlea…beyond the science…beyond the intricate intervention…to those engaged blue eyes asking for Mr Bean.

The macaroni and cheeses and Mr Beans of this world matter. Let’s make sure we see them, hear them, and dare to take that first step forward in going the extra mile.  It’s always worth it!





“Mom! Some people think it’s bad to be deaf.”

“Mom! Mom! Mom!” Three voices called for me as hands waved frantically to win my full attention. The girls had arrived home from school with a burning desire to fill me in on something that had evidently caused some distress.

“Hold!” My favourite sign at the time, “I can’t look at six hands and listen to 3 voices at the same time! What’s the matter?”

“Susie told us that some people think it’s bad to be deaf!” Hadassah explained, stunned at this foreign notion.

“Yes! Sometimes people think you’re stupid if you’re deaf,” Tahlita added and Eden stood with her raised questioning eyebrow – one of her iconic facial expressions that gives Mr Bean a run for his money!

Finding myself at a loss for words in that moment, and wondering whether the deaf history at school that day may have been a little serious for little people, all I could come up with was an instant look of horror as I exclaimed, “Really? No!”

I mean what else do you tell your beloved? (Well, Mom cried for weeks when she found out you were deaf, it felt very much like a bad thing to me at the time…?)

So I decided to simplify my own tangled thoughts and seesawing emotions with reciprocating the discussion. “What do you guys think? You’re deaf. Is it bad to be deaf?”

In unison; expressions, voices, hands and bodies agreed. Being deaf was NOT bad.

“That’s crazy! Being deaf is not bad, I can talk with my hands and now with my voice,” one of them explained. “Ja, when it’s noisy or when I’m tired I can take off my cochlear implant and it’s soooo peaceful, aaaah,” interrupted the other as she flicked off her magnet, closed her eyes and smiled at the silence . “And I’m not stupid!” declared Eden, “I think people who say that, are stupid,” the 5-year-old maturity reasoned.

Being deaf feels like the worst thing that could ever happen to anyone when you are being presented that ABR result for the very first time. And because we live in a world that can’t think out of the box, life is often unfair for deaf people – not because they are deaf, but because we are selfish. And not because we intend to be selfish, but because we don’t know better. And then as you get to walk along this unfamiliar path, you wonder whether perhaps, instead of being “bad”, could it simply just be a matter of being “different”? Different enough to freak you out completely as a new deer-caught-in-the-headlights parent of a deaf child, but simply different, none the less.

The cool thing about differences, is the longer you hang out with them, the less different they feel, as you create for yourself a “new normal”. That which scared you is now familiar (and who knew you’d ever admit)even welcomed.

I’ve had reversed opportunities to expand on this with the girls which has really helped their own acceptance and understanding of people who are different to them.

A few months back we were standing in a queue with our week’s groceries. The people in front of us were a mother and adult daughter who had achondroplasia (dwarfism). Sign language is an awesome super power – you get to talk privately because no one understands you.

“Mom, what’s that lady’s problem?” A concerned set of hands enquired. “What problem?” I replied,  “I don’t see anyone who has a problem?” Eyes strained in the direction of this lady, as fingers itched yet resisted the desire to point, “Thaaaat lady mom! Look!”

“You mean the small lady?”

“Yes, her! What’s the problem?”

Golden opportunity.

I looked over my shoulder to the people waiting behind us and spotted a little girl seated in the trolley negotiating a Kinder Egg with her mother. “You see that girl?” as I gestured with my shoulder in her direction. If she asked her Mommy, “Look at those three girls…they talk with their hands and have machines on their ears with flashing lights. What’s their problem?” What do you think the Mommy should say?

“That they don’t have a problem, they’re just different, they’re deaf,” replied Tahlita confidently.

The three of them looked at each other as I could almost see the pennies drop simultaneously.

She’s just different. And that makes her like us. Different.

“That lady who is different, Mom, I like her hair, why is she short?” Much better! I proceeded to explain that she had achondroplasia. (Awesomely, we found a book about a little girl with achondroplasia shortly afterwards which fueled further good discussion and opportunities to grow empathy).

Being different can suck if people treat you like an alien. Let’s teach our kids to be kind, understanding and inclusive in their thinking. There is so much to glean from others’ differences.

And here’s the thing – the best part of all – we’re ALL different!


Deaf, you biscuit!

In celebration of Deaf Awareness month (September) and in celebration of 4 years of committing to this journey, I’m going to share some the fabulous things that, Deaf, has done for me.

Raising kids that don’t fit the “typical” mould, comes with its challenges. (I can’t help a below-my-breath giggle as I type that EXTREME understatement.) But man, being Deaf and raising deaf kids, has its bonuses. So whilst some days, you make me fight my greatest fears, today, Deaf, you four – lettered friend – I salute you!

Here are a few reasons why:

  1. Communication.  What is that? Talking? Before this journey, I had no idea of the complexity of this seemingly simple task.  Families with hearing kids probably think they communicate well, parent-to-child. But just because your auditory pathway is typical, there is no guarantee that meaningful communication will happen. Communication takes work.  Most marriages know this well!  Had Deaf not slapped me right upside the head on this one, I may have missed it. I cannot imagine not getting to the crux of the matter when one of my girls is upset, or not being as intuitive to their body language and expressions, to know when to listen harder. The fact that my girls are three of the best “listeners” I have ever met, I know that communication actually is independent of hearing and talking.  I’ve wrestled my own limitations in communicating with them early on; blood, sweat and many tears involved, but man, it has been worth it. They are still little, and we are communicating well. We know each other intimately and care about each emotion. Deaf, if it weren’t for you, we would have been ordinary, and not every ordinary family truly “gets” communication. You’ve been an absolute biscuit in that regard!
  2. Deaf, you gave my comfort zones the middle finger! I’m an introvert, I do not like attention, let alone doing anything that could even potentially be embarrassing. I’m the person that dreads weddings because of the dance floor, I do not want to make myself vulnerable or give anyone any opportunity to think I look silly…and then Deaf, as you do, you brought along your friend Sign Language. Sign Language is not shy.  She’s dramatic, and in-your-face and well, is not a respecter of privacy. Throw in a mom that contributes to that “94% of parents who haven’t a freaking clue what to do with their deaf baby” statistic, and you’ve got stuttering fingers, deer-caught-in-headlights response to receptive finger spelling, your face is doing things you never dreamed possible, and you know what…for the sake of communicating with my kids and other adults like them, the introvert within me has to step aside. Sign Language, you’re the fun friend, the one that brings out the life in others, the one that laughs with you when you look like a paw paw. You’ve lightened me up, and helped me to care less. Now that’s a true friend!
  3. Deaf, I had no idea, that when you forced me onto this journey, blindfolded and begging you not to, that you were bringing me to a place of all things REAL. In today’s world so much is fake. We are brainwashed into coveting the lives of the Kardashians, and yearn for Facebook-perfect profiles. We die at the thought of anyone truly getting to know us, as we are terrified of not fitting in, and being rejected. Well, yet again you crashed this one in style. I suddenly found myself alongside other wide-eyed folks who also contribute to that “94% of us who haven’t a clue” stat. There’s no question about it…we don’t have Facebook-perfect lives, and it’s glaring obvious that we “don’t fit in”. What an incredible gift to bypass the superficial “what if they reject me when they realize I’m different” bull, and have friends that lead lives equally as imperfect as mine. Beautifully imperfect. Perfect sux, as you have to maintain that plastic façade.  Yet again, the friend who knew better – Deaf, you biscuit!
  4. You made me brave. Whilst this introvert has always been fairly willing to be uncomfortable for the sake of advocating for others, gee, I had no idea what doing that daily would feel like. The first time I asked for an accommodation for one of my girls, I practiced how to say it a good few times in my head first, and then the words came out in a very nervous and apologetic way. Let’s just say that with practice, I am unapologetic about speaking up for my kids, for what is right and fair. It’s like you’ve got my back Deaf, cheering me on…reminding me that more is possible and that these three are worth fighting for.  Life is precious and valuable and made for a purpose, I get that now more than ever.
  5. Deaf, you keep my brain challenged. There was a time when the twins were little where I wondered if my life would ever be more exciting, than keeping a check on the number of wet nappies daily and the number of milliliters of milk each consumed and puked up. Well, you made sure that I’d be challenged intellectually on an ongoing basis.  By the time my kids have kids, I’m sure I’ll deserve a few honorary degrees in audiology, linguistics, education, psychology and heavens knows what else! One thing is for sure, Deaf, you sure are NOT boring!
  6. Deaf, you totally messed up my understanding of human hierarchy. I blame medicine for influencing me negatively. The more letters you have behind your name, the more valuable you are, right? No? Come one…deep down inside you know that is an ugly-but-true core belief of society. Well, guess what…Deaf, introduced me to moms with no formal education who have more expertise than people with the letters behind their name (which are meant to qualify them more).  I’ve thrown aside my admiration for the learned, and embraced a sincere awe for parents deciphering their complex kids on the parent-24/7-shift, with a smile on their face and frankly, making miracles happen. And then, in their spare time, making miracles happen for others who are similar. Whilst you handed me a kaleidoscope of freaking scary views at first, I am so grateful for the perspectives you have given me. Deaf, you biscuit!
  7. Whilst I try my best, flip I stuff up a lot. I get tired, and say things that I shouldn’t which could be hurtful to my special three. The best part is, since fatigue is a huge instigator of these human moments, most of the time I’m at my most fragile just before they go to bed (when all hearing help is safely in its various night store boxes), when I may snap at yet another need to go to the toilet, and all the usual things that kids do to procrastinate bed time. I’m finished, and all I want is silence. Auditory silence… visual silence…brain rest…and as I spurt out a frustration that I instantly regret to a child who is walking off to the toilet yet again, I am relieved to think…she didn’t hear that! Deaf you flipping biscuit! You have saved me and them on many occasions! You’re the giver of the second chance – that can only be a win!
  8. So whilst the lack of incidental learning (a phenomenon true to deaf kids that statistically sees deaf children leaving school with the general knowledge of an eight-year-old) is something that totally freaked me out in the beginning. It has seen me exhaust myself to fill them in if something interesting is being said and done some extreme interpreting at times to make sure they don’t miss anything. It’s the reason our internet is finished long before the end of the month (long live uncapped wifi which we are getting soon) as the YouTube videos of a baby joey crawling up into mommy kangaroo’s pouch, the eruption of volcanoes, what life is like inside an igloo and other weird and wacky cool things, are constantly being searched. I then just have to look around me and see the deterioration of this world, of moral values that I hold dear.  Kids are growing up too fast.  Crazy stuff is being said over the radio, and conversations are had, that at times, I’m like man, that’s inappropriate with kids around. And then I think…dear friend, Deaf, you’ve sorted that one out for me. You’ll help me to keep them as protected as I’d like to for as long as I need to. I’m their mom, and that’s my prerogative, it’s my responsibility frankly, and Deaf, you’ve made it that much easier.
  9. Deaf, at times I think you’re of the caliber of the X-MEN with your superhuman-powers. Conversations across a distance are no challenge to you. As most people get terribly frustrated in a noisy crowded room, I can get my kids’ and husband’s attention… and without elbowing a path towards them to communicate my intention, I can say pretty much anything to them, with full comprehension. Try watching your kid across the karate hall about to walk onto the mats to compete. She glances up at you for reassurance. What would you give to tell her that “she can” and that you are proud of her? Yet again, Deaf, with our hands, there is no distance between us.
  10. And then, there are things that matter less, but are really cool to have. Having full conversations on the back of a safari truck when silence is needed, or even whilst scuba diving (one for the future) is nothing less that super-power cool! Chatting and laughing loudly with my best friend, over the phone, as I sit on the couch in their bedroom as they fall asleep at night (a need of my youngest at the moment) – what a bonus! Investigating why the heck the alarm has gone off in the middle of the night without adding to the worry that it may wake up the kids…need I say more!?

Deaf, you biscuit!

**[“You biscuit” –  a South African slang term for affection meaning similar to “you wonderful”]

Mom to 3 Incredibles. FCEI Africa 2017 talk – bringing things together.

Five years ago…in spite of being part of the medical world, this conference would not have automatically drawn my attention. I didn’t understand the impact of hearing loss on the lives of children and families. Four years ago, I could barely say the word D-E-A-F, my ability to think rationally and consider the possibilities that it could mean for me, were all silenced by the enormity of the unknown, and frankly , impossible seeming task that at that time, I did not want any part of.

I was always a person who had taken care to prepare meticulously for anything that was in my power to do so.  I remember a moment when my twins were ten days old. Having not closed my eyes for over 48 hours, I stared at myself in the mirror, and without much thought, caught myself saying out loud, “This was a test you couldn’t study for…you haven’t a clue, have you?”

I had no idea then, that three years later, I’d feel an even more deeply, that overwhelming feeling, of being so ill prepared for the most important test of my life – that of parenting. What was Deaf, and where did it come from? There was no time to study up, take a class, or prepare in advance, yet there was a very real sense of panic for the need to already know what to do and how to make up for what seemed then, as my ultimate life failure – that of missing that my children couldn’t hear. I needed to be an expert immediately…in actual fact I needed to be an expert 3 years before…

Let me take a moment to add, that in SA pulling a 24 hour plus work shift…carrying the responsibility of life and death daily at your weakest moments, is a very ordinary reality for a young medical doctor. But when it’s you that the pressure relates to, and when there will never ever be a imagined rest or break or moment to catch your breath as perceived in that moment, it is enormously overwhelming. So whilst it’s the easiest thing to advise a family to have those little cute hearing aids in those ears for all waking hours – until that’s your child, you cannot begin to imagine what that task initially means on an emotional level, never mind the often frustrating practicality.

One year after knowingly becoming a parent of deaf children (as they were deaf all along), I was blessed to attend the FCEI conference in Austria. There I met friends – fellow parents who had done so much for others yet were wearing the t-shirt for their own parenting journey – parents like Snigdha, Bridget and Ann who are with us today. I have to just say that the most impacting thing I experienced then, were the presentations made by successful Deaf adults –that exposure literally exploded grief for me. It got me inspired…

What would it look like to start a parent – led support programme here? What would I need to start that? Two months later myself and my colleague Debra, started THRIVE.

Over the last four years, I’ve often thought that my own journey of figuring out how on earth to parent a deaf child, has so many parallels to initiating and leading a movement of support for others. In my case, this specifically refers to the founding of the parents support group THRIVE and now also being a leader in HI HOPES.

Having now met many parents from around the world, and through my own journey, I’ve come to the understanding, that for a number of reasons, it may very well be a parent who initiates both parent peer support but also other interventions or educational support services – or at least pioneer change in these areas. For the kinds of parents sitting here today, the level of desperation that one reaches out of a synergistic mix of love and fear, as a parent – is enough motivation to move one into action. Unfortunately though, our own insecurities, our own diluted perceptions of ourselves, our perceptions of very real power dynamics out there, which blind us to our own worth and potential, sometimes paralyze us from taking that first step. This doesn’t only apply to parents…but to anyone who has sat in any session over the last three days with a burning sense of purpose to action positive change.

As we pull things together, I’d like to share some of these…as for many of our delegates here, the question is about starting something. Something that would possibly help others that may or may not have a direct benefit to yourself. These are things I have observed, not necessarily strengths of mine, but things I too need to be working on.

  • Learning to navigate through the clutter.

As a parent, to start, everything’s messy and confusing!

What brand of hearings aids? Cochlear implant company? Oh CIs are bad? No they aren’t, they are a miracle? She needs to sign? No don’t sign, she might not speak then? Mainstreaming is important… don’t mainstream as her needs are very unique…

You feel like you actually can’t make a right choice. That in itself can be paralyzing. When working with people in the NGO setting I realized that similarly, there really is not one right way of doing things, different models are needed for different environments. Don’t let the fear of making a mistake, stop you from making any decisions. Make the first decision, then the next, and then the next – each one, your best choice in that apparent time.  Navigate through that clutter. Flexibility is your friend whether you are a parent or a leader of a movement or organization…embrace it.

  • Do things purposefully.

Sounds obvious. I can honestly tell you, that there has been speech therapy homework and occupational therapy homework that I’ve rushed through at the eleventh hour so that professionals won’t think that I’m a bad mom. If you are going to do somethings, do it purposefully, or admit when something simply cannot be done right now. Don’t do things just for the sake of doing things. Sometimes unpleasant administrative tasks are a reality, but whatever you do, be purposeful about it.

  • Get comfortable with being uncomfortable.

As a parent You will undoubtedly have to push a little, but most likely a lot, no matter where you are in the world. This really was quite uncomfortable initially, but something you become better at with practice. Ask for help, ask for advice.  Change, for most of us is uncomfortable.  Ok, so that communication methodology isn’t quite doing it…let me try… or…mmm…this school choice no longer seems to fit, I wonder what my other options are?

 On the setting up of support or initiating community support front, it won’t be comfortable looking for funding to start a support group of sorts, there will be lots of little challenges, and a fair number of barriers.  Sometimes, simply working with people is not comfortable.  How many challenges and barriers do we expect our deaf or hard of hearing children to face? Let’s also lead them by example.

  • It’s okay if not everyone likes you.

As a parent, if you chose to do IEP meetings well, I can assure you, that there is a good chance that someone at your child’s school will not like you. What’s more important is that your child is able to reflect of the everything you’ve given to see them be their best, and feels loved it.  When you start a form of support…someone may see you as a rival of some kind, a competition to funding, or may have a politically view different to your own…someone won’t like you, and that’s okay! When you advocate for the needs of your child, the needs of a people group as a whole, or encourage others to advocate for their own family – yep that’s a recipe to not being like by all…don’t let that deter you.

  • Get a vision.

My vision as a mom, is to have children who are happy, who have good self-esteem and close family relationships and special sound friendships. I’d like to see them be able to dream, and then follow their dreams. There’s a goal…now I can work on the road map. That road map, needs me to stay focused when the going gets tough or when I feel like giving up.  Similarly, if initiating EI in your area is the goal – what does that look like? See it…imagine it…think of the details…write them down…have a dream to hold on to because there will be times you feel like giving up. As Snigdha said yesterday – “the dreams of an empowered parent, are those that keep us awake at night.”

  • Don’t wait for someone else to do the thing you need done.

Find people who can encourage you, people who have been there, people who believe in you – there are those people in this audience. Then do it…and do it afraid if you have to. But make that first move. Have limited respect for the word “NO”. You may ask for school accommodations, and may be rejected…don’t settle for that “NO”. You may approach authorities regarding EI strategies. At some point someone may tell you that it is not possible. As Nelson Mandela said, “It is always impossible until it is done.”

  • Be faithful with the little.

Whether its persevering with that darn hearing aid on day two or three, or replying faithfully to emails within the realm of a support structure you have initiated. Reliability and faithfulness is always rewarded.

  • If NOT you then WHO?

As a parent – if I don’t put the hard work in to learn to communicate with my child, who else is going to do it? You may be here over the past three days, thinking how badly change is needed in your setting. Maybe something new is needed, maybe there is nothing at all where you come from. If not you then who? This might mean you need to start something alone, or network and encourage someone who has the means. You are part of a community who can help and support you. Don’t look for excuses; embrace the opportunities…you’re sitting here for a reason!

  • You are more than enough.

And in the same breath please know that you really are more than enough. I’m standing here today, because someone told me that when I was starting out. You may need to rally support, and get advice. You may need to strategize with people who have skill sets different to your own, you may need to network…but with perseverance, and a vision, you are more than enough.

Look back at the journeys which have brought you here…can you see your own resilience? Things don’t have to be perfect before they begin.

So whilst the task at hand may feel impossible for some – the idea of initiating ECI in your setting or building in that area further – you actually already have what it takesyou’ve been in training all this time.

So as I close…I’d like to share this little clip. (thanks to Leeanne Seaver who introduced me to it)

Broken Escalator

Are you waiting for someone to save your situation? Your community? Your family? Do you feel powerless…or can you leave with the encouragement of a time like we have just had… a new membership to a community of FCEI, and walk up the escalator?

It’s an encouragement to take action – in your capacity as a parent, a professional or a pioneer…or a mix. Don’t wait for someone else to do it all for you.  It’s hard not to focus on everything that is not ideal, or everything that is absent.  Lift your eyes and see the opportunities…the possibilities…the way to more.


“I want to be…” Campaign. Saying “Yes” to dreams!

“Mom, when I’m big, I want to be a Vet. I want to help animals,” she signed, eyes gleaming as heart and head agreed on a dream.

In the split seconds between an assuring smile, careful nod and encouraging hug, I couldn’t help debating whether to interject her little dream with a suggestion that yes, she could help animals…she could volunteer at the SPCA, or maybe we could adopt a zoo?  Was it ok for me to affirm her actual dream or even dare encourage it, when as it stands in my country for kids like her, that’s pretty much an impossibility? What do you say to your kid? “Sorry Honey, Deaf kids can’t become Vets, or Doctors, or Scientists, or Engineers or well, anything that needs Physical Science as a school subject?  Maybe think of something else?” Imagine choosing to just pretend for that moment, that becoming a Vet for a Deaf Bilingual child was possible, just to keep that toothless smile bright and excited, and protect that little heart from prematurely discovering the overwhelming reality.

Sure kids dream of being princesses in castles, super heroes, astronauts and other things that only very few might ever be able to experience, and yes, they even have the freedom to change their adventurous minds fifty million times if they want to. The joy of endless possibilities!

And whilst I’m the first person to appreciate that joy, contentment and “success” need not come from any clichéd career, I still think having the freedom to dream, and ultimately choose how to spend your life, is important.

You know what?  Those sensitive hands and heart, would make one hang of a Vet or even a compassionate Psychologist! That enquiring and creative mind would be an exceptional Scientist, Inventor or Leader for that matter. That astute vision and attention to detail – the making of an incredible Designer or world class Architect. The sharp sense of smell and taste – a recipe for a MasterChef!

So, what is limiting our Deaf children? What is snuffing out their dreams for their future?

Early Identification and Early Intervention are critical. Time missed here is critical time lost. This reality is true for most developing nations – that’s the bulk of Deaf children!

Then, the ugly truths of the unequal education opportunities, aren’t often enough declared nor honestly discussed. The fattest elephant is in this room!  Where can my child learn Physical Science? There is not one school where she can access, and I mean truly ACCESS this subject! According to statistics, Deaf children in my country, will leave school with English literacy levels equal to that of a typical primary school child. There’s no chance there of the Psychology degree, nor really anything that will require independent reading for comprehension and study.

It would be so great if more people said that this reality, was not okay. That little Deaf people should have, “I want to become…” dreams too. That moms and dads all over the world wouldn’t need to shatter those dreams early to avoid disappointment later.

Feeling compelled to share the truth and advocate for change, I roped in an incredibly talented friend of mine, Julie Smith-Belton, who helped me created images of a “I am Deaf, and I want to be…” campaign. Why? Because being Deaf shouldn’t mean that you can’t dream. It shouldn’t mean that you are discriminated against through inequity. It shouldn’t mean that broken systems dictate your future. Being Deaf should exclaim, “I’m different and unique, and I CAN!”

Julie, thank you for sharing your talent with us and for us! Deaf kids out there – you’ve been made with special gifts and for a special purpose- let those little lights of yours shine bright! You CAN!   Parents – NEVER settle for 2nd best; comfort zones are overrated!  Government – you are losing out on an incredible resource – the gift of our Deaf people in every arena.




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Architect fashion designer2Managing Director

Happiness is : celebrating the contents of everyone’s basket

I’ve said it before that this journey is not only about the development, advocacy, challenges and uniqueness of each of my girls alone, but there is a parallel journey of “self” for parents themselves.  An Easter egg hunt the other day, helped me to reflect on my “parallel” as a parent.

The girls had enjoyed crafting paper mache Easter baskets for their much anticipated school Easter egg hunt. I had the fun of playing Easter Bunny, as I was tasked with hiding a few decedent treats each, in the untamed garden. Once perched in subtle nooks and crannies, I called the girls, eager to capture a few photos of the fun. There were some ground rules that were explained, but kids being kids…these were soon forgotten, as excited little bodies trotted off clutching their new baskets. Squeals and shouts, furiously waving hands and extreme expressions declared the acquisition of each find. It didn’t take long though, before this fun activity saw excitement turn to disappointment, jealousy and frustration, as eager eyes compared the finds of each other’s baskets. I’d hidden a few marshmallow eggs each, a trio of tin foil-wrapped white eggs (my fave!) and a bigger bunny for each little hunter. In spite of already having a fair collection each, panic struck as the possibility that a friend may have more than themselves, was considered. I gathered the troop and inspected each basket. They were all relieved to see that they pretty much had the same little pile of glistening eggs. We had agreed that they’d have the loot split equally when back at school, anyway.

Well…they were NEARLY equal. A teary Tahlita expressed that she did not have a chocolate bunny. In that instant, my usual sharp memory failed me, as I could not recall the 5 little hiding spots for the 5 bunnies. How hard is it to remember 5 spots?! What started off as an individual hunt for the hidden spoils, became a team search party for the missing bunny! After 10 minutes of me feeling like an idiot for failing a fairly simple task, we heard a hysterically excited Eden declaring her successful rescue. The rebellious vines that shelter the garden path had hidden it well. Everyone cheered and hugged Tahlita, as the golden rabbit was handed over by her sister. There was a calm sense of contentment all round.

Apart from the sugar high that soon followed, we had an amazing opportunity to discuss some of the very real and tricky lessons that were learned and experienced, outside of the chocolatey kind. Again, ever grateful for the language that enables me to get to the heart of the matter, we discussed what had brought the satisfying joy. One by one, they reflected on their feelings of when they thought that someone else was “winning,” and considered how their actions made the other person feel. A great Theory of Mind development opportunity. The resounding conclusion, was that it felt fun and happy when they were all helping Tahlita find her chocolate bunny. The sense of “team” when they were no longer comparing, brought them all joy and contentment.

Whilst being the “adult” in facilitating this life lesson with my three, I couldn’t help feeling somewhat convicted of sometimes where I’ve lost the joy in the hunt for the prize, because of the distractions of everyone else’s journey…and selfishly so.

Every parent is on a journey, whether their child is hearing or deaf, special needs or typically abled. Every single parent will face challenges, feel inapt at times, have victories of various forms, and make mistakes. It becomes a lonely journey when we are comparing our “winnings” with the mom next door, instead of enjoying the moment of something very special…something not an obligatory right, but rather a gracious blessing.

For those of us with deaf kids, there are areas of hyped intensity and times where we feel like everyone is looking to see whether we are doing a good enough job. Erroneously, it’s the no-further-questions-asked outcomes that are observed, that make that judgement call on the effort of the individual parent. Comparisons are made across a range of very different children, rather than vertically along one single meandering journey. “That child speaks so clearly, wow that mom did a great job! Gosh, my daughter doesn’t, does than mean I’m not a good enough mom?…What does that mean for her future?” … and the panic sets in. Or “Phew, he is doing so well at school, what amazing parents he must have!” Every little kiddo that we have been gifted with, has their own story. And sometimes we get so caught up with comparing notes with the family next door, that the joy of the moment, the treasures that we claim along the way, are not even noticed, let alone appreciated.

Our rewards, “wins” and special moments look different on different journeys, how can they not when we are parenting extraordinarily different children? Wouldn’t it also be a sad day, when we felt that we couldn’t share our victories with each other, in an effort to not seem to “boast” about them, or that someone else may feel bad for not having that particular one in their basket? It’s simple human nature to not like the feeling of being left out. When we are struggling along, and other people seem to be winning…their kid is doing well at school, receiving awards in sport that they participate in, or even just being able to participate in a sport, speaking more clearly…or just doing something that feels out of reach for my child in her “now”, phew, it is a struggle to feel contented with my child’s victories…it’s a struggle against that “I have no chocolate bunny in my basket” feeling. It’s a struggle to even see the other 10 shiny spoils that are piled high for my enjoyment.

In leading a parent support group for parents with kids who have a hearing loss, in South Africa, I’ve tasted the joy of community. I’ve experience that exhilaration in sharing with the joys and victories of fellow parents journeying similarly yet very differently. My joys have been multiplied as a result, joys that my journey would never have led me to. I do have to keep myself in check every now and then when panic sets in. My child’s unique journey is precious and priceless, and I really do want to enjoy as much of it as possible, appreciate what I can and celebrate at every opportunity. Choosing to appreciate the simple things, is part of that.

Issues around unequal opportunities, inequity and discrimination are a completely different matters altogether. An established community of people who are able to celebrate in the uniqueness of a fellow family’s child and journey, yet stand united on common challenges and obstacles, is a potent and powerful combination.

Let’s marvel at our fellows as they rejoice over treasured moments and new developments, personal achievements and celebrations, because if we do, we’ll double our joy and contentment and realize, phew, I already have the prize and my basket sure is full!

In Parallel

So often on the journey of raising special needs kids, we get wrapped up in their progress, their process, their needs, their difficulties and their victories.

Much of the time, people only see the sacrifices, the challenges, and the struggles that allow the child to be invested in and loved on. Whilst these are very real, this journey is definitely not a one-sided-only gain. Whilst I appreciate the will of others to understand me, the kindness behind the empathy…there is no need to pity me.

The day of identification, reminds us that we are fragile. Fragility is both beautiful and painful, and allows the barren callus, which we have grown to protect our emotions, to be cracked and broken. It allows for softening and newness.

The times of needing and accepting help, engage moments of uncomfortable vulnerability. I so clearly remember the night when I called my mentor for the first time…that evening changed my life. As I plugged her cell number into my phone, I hesitated.  “She’s a professor, what if I’m judged for missing the fact that they are deaf, for leaving it so late?” I knew I needed help, and dared to be vulnerable. Embracing vulnerability, allowed me to be embraced in return, by Hope.

Being caught in the eye of the communication choice storm howling around me – opinions and voices determined that their opposites were true. I learned discernment as I weighed up the pros and cons, whilst following my girls.

When I said the word D-E-A-F for the first time and met other Deaf people, I looked fear in the eyes. The heaviness inside me eased, as I allowed myself to lift my gaze and see what it actually meant to be Deaf. I was forced to be courageous, and discovered a wonderful brave new world.

As colleagues in medicine immediately asked me about my faulty genetics when I mentioned my girls, as if I carry something very flawed and unfortunate, I learned that not everything I had been taught had been true. I discovered the power of words, the flaws of text books and the strength of empathy.

As first signs emerged, and we communicated for the first time about wet shoes, I discovered myself being able to celebrate the ordinary. There is continuous joy in celebrating the frequency of ordinary.

As I laid down my career dreams, and embraced the privilege of mothering the Deaf, I tasted what it meant to let go for the first time. Not being in control looked a lot like freedom.

When I woke up on days where I didn’t want to crawl out of my comforting bed, I learned that I could hide in a Secret Place, one where the serenity of Hope and Peace has been a soothing balm to any inner hurt.

As I began enjoying the world discovering my girls, I found a joy, unlike anything I’ve tasted before. A joy that says, “It’s okay to be different, hey, it’s even quite beautiful.”

As I sat on the bench, watching her being chosen last for the team amongst hearing peers, I felt pain unlike any other. Pain that reminded me that I was alive, and breathing and feeling.

As I was told to accept the ordinary, as anything more was just too hard to fight for, I discovered that I was strong, tenacious and determined.

As I’ve focused on communicating, I’ve discovered that extracting the inner thoughts of that little person, and understanding what’s in their heart, is something easily missed by the average parent of the average hearing child. Having to listen carefully to those hands, expressions and vocalizations, has been completely enabling.

As I’ve scrutinized education options, studied policies and sought out those that know better, I’ve found so many weaknesses in a system, that I likely would have otherwise trusted.

As I meet barrier after barrier, and brainstorm ways through these, I’m learning to become resilient.

As discrimination and bias fill me with hateful rage, I am reminded that I am flawed, in continuous need of Grace, and challenged to re-mould the anger, into helpful strategy.

Engaging intimately with friends journeying similarly, has allowed me to encounter the life outside of the fakeness of Facebook. One that screams, “This is really hard, but you are not alone!” Instagram smiles and Facebook ‘likes’, cannot compare to the richness of just being real.

Whilst challenges are faced, and joys interject, whilst systems are fought, and quite frankly, people are offended by my persistence in wanting more for my girls, I’m forced to face my insecurities, forced to leap out of the comfort zone, forced to venture into uncharted territories and invited to trust…continuously reminded of my need for Grace and my utter dependence on Faith.

And when that sweet breath warms my cheek as we do butterfly kisses, I know what it is to love unconditionally.

I have received gifts that no money can buy. Gifts that aren’t visible or tangible. Gifts that are immeasurable. So whilst I give and sacrifice and help and serve, I am being blessed beyond measure on a parallel experience curve of my own. To die to one’s preconceptions, meticulous planning, imitation dreams and plastic comparisons…is simply, to gain.