Royal Approval

To: Her Majesty the Queen

Dear Madam

We have the privilege of planning a holiday to your Kingdom in a few months’ time. It’s something we’ve been saving up for years. Our children have collected birthday money for half their lives and sadly realized it amounts to very little with the exchange. However a trip to Hamleys is on the cards and the excitement is extreme! My littlest person, who’s just turned seven is a great fan of your very own Mr Bean. He is the source of much delight in our home.  She was so hoping to meet him, but unfortunately he’s not listed as an Airbnb host.

One of my twins (they will be celebrating their ninth birthday when we are in London) has already packed her hand luggage. She’s thought of all the details. As the little lady that she is at the mature age of eight, has also factored in a travel size perfume (no idea where she got that from, but must have been something she acquired for such a time as this). Her bursting backpack, with a neon pink neck pillow clipped over one strap, lies against the bedroom wall … travel shoes patiently waiting aside. I noticed a little gold ear of material escaping the tensioned zip, and enquired thereafter. With sincere confidence, this little girl declared that it was her chosen outfit for when she gets to meet you.

You see, she thinks you’re completely wonderful – her favourite and cherished golden dress has been set aside just for you. The highest gesture of honour and respect she could possibly come up with. The thing is…the thing I’m most proud of, is that she thinks she’s worth meeting too. And that leaves me questioning worth and worthiness and honestly, I’m not sure what to tell her.  Tahlita, along with her two sisters, is deaf. She doesn’t talk perfectly, school isn’t a breeze, because she was identified late (which is linked to language and brain development) so she has to work harder than most every single day. Being deaf, means she belongs to a minority group that carries a history of discrimination and oppression. It’s still like that in our country. People like her aren’t usually made to feel celebrated in their differences, let alone find themselves worthy of a private meeting of Her Majesty.

So  when I pluck up the courage, I will let her know that we can go past your Royal Residence and spot one of your regal guards, but that her gold dress best be left at home. I’ll explain to her that you’re really busy, and very kind and that you’re so very sorry to miss out on the honour of making her acquaintance.  Because it would be an absolute honour.  Like you, she’s completely wonderful. She might not be famous nor have royal blood, but she is quite extraordinary.

I’ll also remind her that she has a King who wants to talk to her all the time. A King who delights in knowing her name. One who is never too busy. One who traded the streets of gold and gates of pearls for a crown of thorns so that she could encounter royalty every day as she says and signs His name. She can wear her gold dress for Him any time.

Thank you for being the icon little girls dream of meeting. Thank you for the opportunity to discuss earthly and eternal royalty, but most of all thank you for the opportunity to affirm my precious princess, confirming that she indeed is worthy.

We cannot wait to explore your magnificent country!

Warmest wishes, wisdom and good health to you.

Bianca

PS – please send Mr Bean the love and regards of the littlest – she wears him on her cochlear implant every day! (Her name is Eden)

 

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Have we lost sight of the goal?

Living the reality of paediatric deafness, one can’t help feeling the surmounting expectation to fit into a predefined box. There are all sorts of academic articles out there defining what it means to be “little d deaf”, “big D Deaf”, “hard of hearing”, “functionally hard of hearing”, “oral” etc. There’s a certain expectation assigned by others if your child uses sign language, and very clear expectations pinned on you as a parent if your child has a cochlear implant. Whatever choice you’ve opted for, someone, somewhere is expecting a certain something from you and your child.

The problem with the field of child deafness is that on polar ends of the spectrum of choice and outcomes, sits groups of people who believe very strongly in a particular view of deafness. On one side parents are encouraged to only talk to their deaf child ensuring optimal amplification access to spoken language. The idea is to overcome the disability of not being able to hear with learning to listen and learning to speak so that the deaf child slots right into the hearing world. At a glance, I think I’ve seen many people assume this to make sense and be a simple set of choices and expectations. It’s often NOT that simple. The other group of believers holding their own on the extreme opposite end of the spectrum are those who argue that Deafness is cultural entity with its own unique language and way of being, a minority group that shouldn’t be altered with surgical interventions such as cochlear implants. These extremes in opinions are as old as the hills it seems, yet they continue to bring much strain and confusion and even conflict to those desperately trying to navigate their unique journeys. It certainly has to ours. It seems to me that either extreme, completely loses sight of uniqueness and diversity and instead nurtures negative emotions such as guilt and inadequacy in the hearts of well-meaning parents. A confused, overwhelmed parent cannot navigate carefully.

As a mom who has and will give up anything to see her kids have opportunities to be the best versions of themselves, you basically always feel like you can’t win. At any given point in time, you’re failing in the eyes of others and often quite blatantly being told so. I’ve been told twice before that my kids might end up hating me when they’re adults…for opposite reasons. Great! Once was, “If your kids grow up and realize they could have received implants and lead ‘normal’ lives, and you haven’t implanted them, they’ll sue you.” Another time the threat of being hated was linked to depriving them of their ‘God-given right’ to belong to a minority Deaf culture group, insinuating that implanting them was in direct opposition to this. Feeling rather overwhelmed by what I had to lose, dare I make one wrong decision, I took a step back and contemplated what was actually real. If my kids know that they are loved and accepted and celebrated for the unique precious people they were created it be, I find it hard believe that they will hate me. That’s when I started realizing that we actually don’t have to fit anyone’s box. The expectations will always be there though, but I can choose how much I let them bother me. The three most important people on our journey are our three daughters, and it’s actually only their opinions that need to matter.

So when my deaf child thanks me for implanting her because she loves hearing music, hers is the only voice I’m choosing to hear. When her identical twin sister comments later that day that she’s so glad we can all sign, it’s her opinion that drives my decisions. And when the littlest of the three contemplatively says to me, “Mom, you know deaf people know more about people than hearing people? Deaf people know about deafness and about hearing people but hearing people only know about hearing people.” I’m gob-smacked by the wisdom of this six-year-old and can’t help wondering if this field has been made unnecessarily complicated. Surely it’s a matter of each to their own? Live and let live? And here the “each” is referring to the child and not actually the parent…and certainly not the professional. Yep that’s the tough part. When our kids are little, the parent has to start with a set of preferred choices, often guided by professionals, but it doesn’t always mean that those choices best suit the child. The child in turn starts “showing” the parents what works or doesn’t work…an endless game of trial and error. And a parent that follows that child to the best of their ability within their means…that’s the parent who will see a successful well rounded child. Researches declares over and over again that the committed parent is the key to this journey.

 

The problem is that the world still expects kids to fit in prescribed boxes. In South Africa the education opportunities for a deaf child are a perfect example of this. Deaf Education is not offering an equal education no matter what anybody says, it’s not and it’s not rocket science to reach that conclusion. Worst part is, sign language gets a bad rep for this, when the problem is not about the primary language of tuition. If it were we’d see German medium schools and other language minority medium schools also failing as a system and we don’t. It’s the system (inclusive of late identification and late or no intervention) and support and lack of decent literacy tuition that is failing our kids trapped in deaf education. But no one else is meeting the needs for the bilingual deaf child either. NO ONE. There is no place in this country where the education would be considered equal and the literacy instruction of good quality which even allows sign language on the premises. NOT ONE. That’s because they’ve blamed sign language for the failings of the Deaf Education system. We don’t fit anywhere. My kids do best with visual support,but we certainly don’t want them deprived of quality English instruction and a firm literacy foundation as this would mean that they don’t have the same educational opportunities as others. So we don’t fit in either box (along with a whole lot of kids who have been forced into those boxes), what then?

The thing that amazes me is the evident loss of sight of the goal. Surely the goal is happy, healthy deaf kids living their best lives? Best lives including aspects like knowing they are loved, feeling accepted, knowing their lives have purpose, being enabled to dream, having good friends, being kept safe, growing a love of reading and learning and self-discovery of the world, exploring new things, having good self-esteem, having deep loving relationships with their families – surely that’s everyone’s goal for a deaf child? … everyone’s dream? Surely? Because from where I’m sitting it seems to me that many entities and people have taken their eyes off this bigger picture dream and settled for much smaller one dimensional dreams, dreams that look like, “having deaf children talk,” and “that a Deaf child proudly knows their Deaf heritage.” Seriously? Seriously! I see beggars every day at the traffic lights – they can ALL talk. I know of people who haven’t lived their best lives yet have a strong sense of their cultural identities…surely the key to unlocking the futures for deaf children should be as complex and as careful as unlocking the potential of any child? Is “good enough” what we’re settling for? Only partial aspects of a big wonderfully exciting picture is now the goal because the linear spectrum of opinion and belief systems cannot be laid down for a selfless circular system of support and shared expertise? Unless the politics can be put to rest and pouting opinions silenced, there’s one group of people who will continue to lose out…continue to have to settle for second and third best…a smidgen of what everyone else gets to experience and explore…and that’s our deaf children.

We have what we need. We have the wealth of knowledge and experience by d/Deaf and hearing professionals alike. We have incredible technology that can support any choice. We have money in this field – there is a lot of it lining the pockets of many! We have the stories of many a generation of deaf and hard of hearing people who we can learn from. And most importantly, we have the kids. 17 of them being born every day in South Africa alone, according to the research, 17 kids who want to show us what would work best for their unique needs and personalities. 17 kids who if identified and intervened early, have the potential to contribute massively to this world’s economy. They need their parents to embrace and accept this journey first. Being trapped running up and down the choice spectrum terrified to make one wrong choice, certainly doesn’t facilitate that. They need parents and professionals asking them to lead them in the direction of choice options that best fit them, without being scared of any of the choices themselves. They need systems willing to listen, willing to include, willing to serve. They need professionals, willing to get over their own predefined ways of how deaf kids should look and sound and be…and instead watch and listen and give. They need you to care, you to see, you to be willing to speak for truth and hope and purpose. They need all of us to say “good enough” is never “good enough”…each one of us, in our unique way is meant to THRIVE.

Identity

It’s amazing how complex this single word can be. An ever shifting entity with elements of consistency. How would I describe myself if needed? I suppose it would depend on the context. But beneath the layers of life experiences, qualifications, short-comings and accumulated “stuff”… who am I?

There is also the reality that we are identified by others in a particular way based on what they see or have been told. Before I had deaf kids, others may have assigned the most identifying part of me being that I am a “doctor”.  In a group of fellow doctors, that was no longer special, and then being the “mom of twins” became my identifier.  Then the one that trumped them all, and has since stuck, is being the “mom to three deaf kids”. Our actions, our lot in life, any particular differences and our perceived value, all contribute to the way that others assign identity to each one of us. The way we identify ourselves and the ways others identify us, may be quite different, or at least may have emphasis on different things.

I’ve been thinking a lot about identity because the dance between various reflections of this word in my life, often leaves me feeling the need to peel off the layers and examine who I really am, as much for me as for the very process of getting to know my girls and developing in them a constant anchor of identity, so that when the storms come, they are not tossed by the various ways others assign their identity, or even expect them to assign their own identity.

When I’m with a group of parents of kids with disabilities, they identify with me as “having three kids with a disability”, the emphasis being on three. What sets me apart though, is that I’m a “medical professional” who in their view, should be more confident in the medical side of the disability (certainly not the case at the time of identification). When I’m with other medical professionals in the field, I’m soon disrobed of my identity as a medical profession, because the layer that is hard to see past is the fact that my genes managed to create “three deaf kids”.

How can identity be so inconsistent?

When my girls are with other deaf kids, their perceived identity has emphasis on the fact that they are “twins”, “sisters”, “oral deaf”, “kids who sign”, “wear cochlear implants”…it just depends on the kids in the group. But when they are with hearing kids…their being “deaf” is the trump card to their identity in the minds of every single individual. And when it’s just the three of them, all variables as consistent as possible, their identities to each other involve some of the finer details…likes and dislikes, personality traits, who was born first, activities they’re involved with etc. etc. How very bizarre is this thing of identity! It seems it’s often more dependent on the viewer rather than the one being identified.

So who am I?

Beneath everyone else’s defining variables of me, some that are very accurate to how I may define me, some a very skewed angle to what’s real and others merely a side view of the full me…what is consistent? What is the anchor? And how do I help my girls find this for themselves?

When each of my girls were born, they had “achieved” nothing and had “underperformed” in nothing either. They had not yet been identified “deaf”. They were little “girls”, “twins”, “daughters of two doctors” at most. The fewest layers of identifiers that they would ever wear. So who were they when each layer was peeled away? What was beneath the draping of identifier labels? Words and phrases that I think cradled the essence of their identity at the moment of their first breaths include:

…Designed, fearfully and wonderfully made

……Created with purpose

………Loved

…………Cherished

……………Celebrated

………………Precious

…………………Worthy

…………………..Accepted

………………….…..Unique

………………………..Valued

…Before they took their first steps they were celebrated.

…Before they made their first smiles, they were cherished.

…Before they could do anything acknowledged as an “achievement” they were worthy.

…Before anyone even gave thought to their hearing status, they were accepted.

…Before anyone considered differences in their genetics, they were designed, fearfully and wonderfully made.

…Before anyone considered their future having been late identified without any language at age three, they were created with purpose.

That’s identity.

And that’s what I want to try and remind them continuously. The essence of who they are is deep beneath the layers they and others will cloak them with. This is their anchor in the storms that they will face. This is my anchor for them, when I’m distracted by test scores or comparable rankings to their peers.

And as I stand looking up as the trials, tribulations and busyness of this journey howl around me… as I consider my many shortcomings, areas I could have done better… doubting myself at times, overwhelmed by the expectations of myself and others and the needs of my girls – the needs I have to provide for…and then sometimes momentarily comforted by an “achievement”… and then I’m reminded that this too is my anchor for ME.

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.

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