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.

Braving Inconvenience

People like being comfortable; “ordinary” doesn’t challenge, it pacifies. Most people like being liked, and actually want to be liked.

An aspect of raising special needs kids, which I am not loving, is the feeling that you are always asking for special favours. Everywhere you go, every club the child joins, every IEP, every assessment; in the spirit of inclusion (and here I mean true inclusion), asking for accommodations, extra understanding and special favours is part of everyday life.  Slowly but surely, you start irritating people and even become an inconvenience to them. You start carrying the perception of being a “difficult mom”, and even perhaps get slapped with the label of being “overprotective”. You start becoming disliked.

Feeling like you are a consistent pain in the butt, is burdensome for parents. The spotlight shines brightly on us as it is, simply by parenting and figuring out these “different” kids of ours.  This is one of the greatest adventures we will ever find ourselves on, but one not without blood, sweat and tears.

No one likes to be an inconvenience to others. Actively parenting deaf or hard of hearing kids, is going to need you to get comfortable with being less than popular.

The soccer coach who you asked to learn sign language to communicate with your child on the field, might find that an inconvenience. Pluck yourself up, walk across that field and offer to teach him a few signs and send him resources to help him learn. Might that feel awkward. Yep, it might, do it anyway.

The teacher in the mainstream school who speaks into her whiteboard as she teaches. Ask her not to. Explain that your child needs to optimize every opportunity to access, so needs to see her lips and not have any sound muffled.  Hey, she might find adapting her teaching style slightly, as an inconvenience. Ask her anyway.

The cinema that never has any films captioned. Ask the ticket salesman to call the manager. That might inconvenience the man behind the counter. Ask him anyway. When the manager arrives, discuss options of having captioned viewings. “Who are you who dares to ask?” I hear you wonder. You are a parent of someone extraordinary, with the task of journeying courageously. Overcome your insecurity, and ask anyway.

School IEPs; some schools do these well, others no so much. Does it feel fun to challenge areas that need improvement, or request learning approaches that best fit your child? Hell, no, it’s uncomfortable, it screams, INCONVENIENCE! Take a deep breath, and ask anyway.

The lecturer who you want to ask to wear an FM system for your child. You find their qualifications and level of education intimidating…you’re just a mom, what gives you the right to ask? Inconvenience, maybe? Swallow your pride, and ask anyway!

The doctor for whom you have a list of burning questions about your child. You don’t want to waste his time? Might taking the time to alleviate some of your fears be an inconvenience? Some may think so. Open up that list of questions, anyway.

The church choir that has started preparing for the Christmas service. Have you considered asking them to learn and prepare one carol in sign? No? What if they see it as an inconvenience and decline the request? Consider Who perceives your child as fearfully and wonderfully made, and ask anyway.

The thing is, advocating for our kids, even in little ways, is not something we should apologize for. Through advocating for them, we show them that we think they are important, that their feelings matter… that they matter. We model viewing inconvenience as part of everyday life, as part of learning and adventuring,  so that when they are independent, they can ask for themselves.

I’m slowly starting to care less about conveniencing everyone else, and more about seeing that my child can be their best and know that they belong. Knowing that they are worth asking for and fighting for, and realizing that they do not need to feel bad for needing any additional accommodations. They are worth my feeling awkward and uncomfortable; they are worth someone else’s inconvenience.

Sometimes a “special favour” or request is received with enthusiasm at the thought of making a difference, to include and embrace diversity. There are people who truly want to help and go the extra mile. Words, cannot express how a parent’s heart dances when moments like these surprise you. You are the angels who we appreciate more than you could possibly know. Thank you for seeing the heart behind the request; the nervous voice or apologetic tone.  Thank you for placing my child’s needs before your own convenience, and deciding to accommodate her, anyway.

When accommodations are made, be thankful, express gratitude sincerely. Share these stories with others, to motivate and inspire them. Support clubs and people who embrace accommodations. Write letters of thanks and recommendation, to community papers and social forums.

The very next time you need to ask for some kind of accommodation, some kind of adjustment to plans, remember the precious person whose voice you represent. Lift that chin up, shoulders back, frown lines straightened, with a smile on your face.  Don’t expect the worst, ask confidently and unapologetically. Graciously receive assistance, and remember that there are other moms and dads also walking across that field, through that classroom, into that office…daring to inconvenience.

Just Keep Swimming

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The girls love going to the movies. I’m not sure which part they find more exciting; watching the actual movie or getting their slush puppy and popcorn combo. Our seating arrangement is key; aisle – child – mom – child – child – dad. This way, there is a child next to a set of hands that can do some explaining, whilst maximizing the ray of light from the wall adjacent to the aisle. Maximal light to enable mom (and dad) to interpret, as not to miss what the un-lipreadable animated characters are saying.

Animated films these days are fabulous, even as an adult, I could thoroughly enjoy being drawn into the plot and quite easily fall in love with one of the cute characters. That’s not an option, currently, as our mission in the cinema, is to see our girls enjoy and understand. There is always a fair amount of post-movie reflection when we are back home, to fill in any gaps or elaborate on some of the “morals of the story.” As they get older, we’ll advocate for captioned showings, and perhaps have access to FM technology too.

Movie time is fun, I love seeing them giggle at parts, that from the evident silence from the surrounding seats, no one else found funny – animation subtleties that produces a funny facial expression or silly gesture. They are also well aware of when they may have missed something, so I’m ready for the enthusiastic arm tapping which is my prompt to “rewind” and explain fast enough, as not to miss future events whilst settling the understanding of the past events.

A few weeks ago, the school holiday treat of Sunday afternoon family movie, had arrived. The girls, torn between the movie posters at the ticket counter and the snack menu across the cinema hall, were debating between a few options. “The blue fish movie, Mom,” pleaded Eden. “Finding Dory,”( or Dor-ree, as we cue it) was the decision.

Prepared to view superficially, and be available to interpret and explain, pass popcorn and clean sticky fingers, I wasn’t expecting that I would connect with the story. Now, if you haven’t watched the movie and intend on doing so, stop reading, watch and come back to this. I’d hate to be a spoiler!

Dory is a fish who has a chronic condition of “short term memory loss”. She’s a special needs child-fish, if you like. She loses her family, and essentially starts a journey of discovering who she is. It reveals how her parents really loved her, how they were so proud of her, and when they lost her, they gave up their little fish-lives, made themselves vulnerable, and devoted themselves to finding her. Not by convectional means of searching and searching, but rather “following” Dory – in essence, a journey of patiently waiting for Dory to find herself.

Their little forgetful daughter had a love of following trails of clam shells. Something her parents had taught her, to help her find her way home, should she forget. Something that they knew, worked for her. Over the years of having lost their little blue and yellow precious, they devoted their lives to laying shell trails in every direction possible, in the hope that, what once worked for Dory, would lead her home.

Yes, this probably seems ridiculous; a grown woman reflecting on a cartoon about a forgetful lost fish!

Whilst engrossed in the home coming scene, a little hand prodded my arm, “Mom what happened now? Mom? Mom why are you…crying?” Mom was captivated by the special-needs-family metaphor.

Special needs parents have two choices. Give up, or give it your all. Those of us who opt to give it our everything, will lay down our lives for our kids, we’ll figure out what works for them, what will “lead them home”. What will help them to find who they are – who they were made to be? Special needs parents get tired, they are worried a LOT of the time, but their hearts burst with love and pride for the little people who have changed their everything. Special needs parents who choose to be committed, are choosing a life of perseverance. A life that requires them to practice patience, a life that often challenges their very weaknesses. It is often uncomfortable, and sometimes really hard. But it can be, and often is, quite beautiful. Special needs parents understand the meaning of…the need to “just keep swimming.”

Finding Hadassah…what will that story tell? What will I need to give up, embrace and fight for, to see Tahlita and Eden discover who they were meant to be and how they will get there? It will require me to surrender my dreams AND fears..and TRUST. Trusting, when everything seems unknown, when there are many barriers and battles still to overcome. Trusting, I think this is one of the hardest things that I find about this journey. But trust I do, not because I have things figured out nor because I feel brave (since most of the time I don’t, really). Trust because I choose to. Trust because I know the One who wrote this story.

My girls, and our journey of discovering how best to parent them, and then being part of their individual journeys of discovering who they were made to be…how they want to “be” deaf, is giving me the space to savour the things about parenting, that I think I may have otherwise overlooked. One of the most interesting aspects of “finding” my three, is that, If I allow it, I get to “find” myself a little more each day too.

Just as you are.

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The thing with raising special needs kids in a time that defines success by the car you drive or the label on your purse, is a constant struggle between the the burn to see the “who” they want to be and the “what” they want to do with their lives, shut the mouths of those who ever doubted…versus living authentically, the life that I truly value, which is one that says, “Who cares what everyone else thinks? Be YOU, be free.”

I’m the girl, who, when I get told, “you can’t”, accept it as a challenge, to prove that indeed, I will. Having three kids who are labeled as “disabled” stirs the same determination to see my three prove the world wrong about deafness, about disability, and about the need to be like everyone else.  This journey has humbled me though, in ways I less anticipated. I’ve scrutinized the labels of ‘beauty’, ‘worth’, ‘wholeness’, ‘ablility’ and many more, and breathed in the very breeze that whispers, “You’ve had it all wrong.”

This journey, this early on, has found me torn between being willing to fight and push and do whatever it takes to see my three be offered opportunities equal to that of their hearing peers. On the other side I err, hoping that I am not tarnishing their sweet unique essence by the culture of conformity and modern day perception of success. Whilst with care, we could move forward navigating what works for one, the real challenge is protecting this delicate balance simultaneously with three very different girls.

When does the struggle to see them have access to subjects like Physical Science (not a subject accessibly to any child in a school for the Deaf in South Africa, and no mainstream school readily accommodates South African Sign Language) compete with one or more of my daughters’ acceptance of the possibility that she was not made to pursue any future that requires Science? For some reason I find myself wrestling my own world view; that to be successful, one needs to pursue a career that epitomizes “success”. Why are these old rags of deception so hard to shrug off?

I want to be the mom that says, “Follow your heart, be what you want, don’t think about money, or even proving anyone wrong.” But especially when everyone is watching (well at times, it sure feels that way) a mom can’t help wanting their child to shine.

But what if their stage is not the same one you have the front row ticket for?

Whilst we struggle to read and spell, yes they are only five (see I struggle not to have to justify this). Whilst we may struggle in areas of literacy development (let’s not pretend that it’s not going to be harder for a profoundly deaf kid) I find myself sometimes feeling the weight of this journey.  Whilst friends with hearing kids say things like, “After a few months, everything clicks and they are just reading and reading.” I’m like, “I’ll dance with joy when we reach that place.” Reach it we will, but with a late identification at the age of three, it will be harder, it IS harder. I teach my kids that they can do anything, not because I want them to prove that they can do anything, but because I don’t want their own thoughts about themselves to be their shackle.

So I take two steps back, and “imagine the worst”. Imagine they don’t get great grades at school. Imagine that their literacy is fine but not brilliant. Imagine that they don’t earn massive salaries or have many letters depicting several degrees behind their name. Oh, Deaf people sure can do all of that, but let’s imagine that mine don’t.

If I am sitting at the edge of my chair in the front row of the story of “success” as defined by this world, I might be disappointed. But if my time and energy is spent on having them see that they are loved beyond measure in the now…the place where they don’t speak eloquently, the place where they get 2 out of ten for a spelling test, the place where they read “purple” as “pink” (10 seconds after I have made the letters P-I-N-K take the shape of a crimson friendly pig to aid memory), the place of not yet having “made it” in the eyes of the world…if in this space of perfect imperfection, they believe that they are complete and more than enough just the way that they are, they will see mom standing in applause, at the core of who they are and not what they do, or how they perform…a place of truth and sincere contentment for all.

I want THAT.

I couldn’t care less about how orally eloquent they become. I want them to know that they are loved. I don’t need them to make us prove to the word that “Deaf people can”. They have nothing to prove, they are enough at this very moment. It doesn’t matter if the “experts” are sizing up the choices that I’ve made for them. What matters is that they are happy and at peace with themselves. It matters that we enjoy each other, that there are no empty spaces deep inside. We complicate life so much by sticking our tacky labels of approval onto things based on the ordinary norms of today.

This certainly does not only apply to deaf children, hearing kids are continuously told that who they are is not enough. The plastic values of society, leave us chasing the things that don’t matter at the expense of cherishing the now. Having being privileged with the task of mothering kids who have shaken everything in me, I have had to reevaluate everything that I thought to be true.

Girls, if you want to study Science, I’m willing to sweat it out with you. May you know though, that nothing you do, nor achieve, not a single word you might say clearly or discriminate precisely, not a single grade you may or may not make, will ever change these 4 facts…

You are worth fighting for.

 You are complete. Spread your wings, but not to impress anyone or prove anyone wrong; do it for you, and the One who moulded each feather.

 You are loved …I celebrate you in exquisite completeness of the “who” you are, NOW.

 You are accepted and crowned with unique magnificent purpose by the One who thought you were worth dying for, long before anything you said, signed or did was “worth” applause.

 

Shut the #*@% up!

Now that I have your attention, hear me out…

This entry is not for those caring friends and family, who share my questions and armor themselves for my battles. It’s not for the sweet inquisitive faces who wonder why there are little intermittent flashing lights behind the girls’ ears. It’s not intended to offend, but rather to challenge; not to point fingers, but rather shed perspective. It’s the voice behind the many thought clouds, silenced by the need to please and concerns about offence, of many fellow parents on similar journeys. It’s the benefit of the doubt, that hopes you might care when my fellow warriors, parents journeying uniquely, think it’s not worth the effort to try to explain.

This blog is a splash of my raw, uncensored thoughts, the product of reckless, unapologetic judgment. Something parents of deaf kids know all too well.

To the lady in blue, who thought it your place to inform me that placing my kids in a school for the deaf would be a “negligent decision,” which would “isolate them from the rest of the world.” Have you considered what my options are? My girls had no language and uncertain access to sound, and you had insisted that I must just persevere in an exclusively oral environment. Have you considered that this may actually be disabling to them? I’m not a bad mom…I’m a mom that will push beyond the voices of disapproval to find the best fit for my children. You disapprove? Oh, shut the #*@% up!

To the Sunday school teacher who humbly volunteered to pray for my girls’ healing. Can you not see beyond their “disability”? Have you missed a few fundamental facts about Grace? The God I know doesn’t see them as defective, He made them extraordinary. Respectfully, shut the #*@% up!

To the colleague who doesn’t even let me complete my sentence explaining my beautiful three, but butts in with a patronizing, “Why haven’t you implanted them all?” and “Phew, what happened with your genetics?” How would you like me to answer you? Would a, “Yes, good point! Your Cognitive Excellence, I hadn’t thought of a CI?” Would you have even though of screening my low risk newborns? Nope! Any idea of what it costs? What was your ENT rotation results? Oh wait, I forgot! The grand total of your ENT experience was a whole 2 weeks in 6 years! And yes, my 2 weeks were also mostly spent removing wax from ears. No, you are not an expert, so just shut the #*@% up!

To the lady at the hat stall at the farmer’s market. Your, “Are ALL your children dumb?” question, nearly brought my husband to tears. In your defense, you are just an ignorant woman, way out of touch of what is, and is not, acceptable. Let’s think…mmm, you might be hearing, but based your not-so-bright choice of words, who’s the dumb one? Maybe next time you see a child with special needs, just shut the #*@% up!

To the hearing aid rep, who knows I collectively have 16 years of experience in raising deaf kids. Your persistent questioning of my choices, as if I am making perpetual mistakes…you may know more than me about hearing aid programs and settings, but have you spent one day with a deaf kid? Based on your expectation of them to lip read you when you ask them questions whilst you have their profound hearing level audiogram before you, I though not! How about learning a little sign language? (Seems bizarre that I need to suggest this since you are an audiologist.) You are an expert of audiograms, not deaf kids. Parents shed blood, sweat and tears over decisions, so really, shut the #*@% up!

To those people who introduce my kids as children with “hearing problems,” please don’t be offended, if I correct you mid-sentence. They don’t have a “problem” they have a “difference,” they are deaf. (You don’t need to stutter over this word). I get that this probably comes merely out of not knowing better, but sincerely, rather than making a statement that emphasizes disability, choose to shut the #*@% up.

To the professional that just cannot fathom why I would be completely contented with bilingualism. Offering me all sorts of solutions to save us from “needing to sign” whilst feeding me false information about the “dangers and consequences of signing.” Now imagine this in sign: “shut the #*@% up!”

To the nurse who I thought was compassionate. When you suggested that my husband and I must have really done something to anger God, to deserve this awful “fate” of producing deaf children. Good thing I didn’t believe you. Scarred hands prove the contrary. Instead of vomiting out lies and judgment, rather shut the #*@% up!

To the Sunday school teachers, colleagues, stall owners, hearing aid reps, audiologists, school teachers, professionals, nurses, friends and family who think before they speak, who take up their shields with us, celebrate with us and share in our struggles, thank you! Please be another voice to those less discerning. Encourage them to simply, shut the #*@% up!

“May your choices reflect your hopes not your fears.” A Cochlear Implant journey.

I sit, slouched on a wrinkled leather chair, seizing this moment to share a new turn in our ever adventurous journey. The chatter of the nurses, and intermittent beep of monitors intrude my thoughts as my mind is on my three precious ones. The friendly tractor print curtains frame a beautiful view of oak trees which set the scene for reflection of both the now and then.

At this very moment, my littlest is probably sitting in her morning ring at school, she probably still has peanut butter smudges across her peachy cheeks from finishing her breakfast en route. One of my twins will likely be very mindful of her sister, whose little empty chair and open desk space tells of yet another adventure.

Upstairs, my eldest daughter (although only by a minute, this is a fact that she’s proud of) is undergoing a cochlear implant. As a well informed mother and medical person myself, I have a fair idea of what is happening in that cold and sterile cubicle. Sometimes, too much information is not comforting, but knowing that she is in good hands and surrounded by love, quietens the list of anesthetic and medical complications that flash through my mind.

Up until recently, although cochlear implantation (CI) had been something that we initially considered and informed ourselves about, we had opted not to pursue this option for a variety of reasons, the primary reason being the cost. A CI is extraordinarily expensive. The initial process for 6 ears would cost in the region of two million rand. Much of this would be covered by a medical aid, but the shortfalls are still massive. There are also significant on going expenses. In saying that, we have also been using hearing aids, which have given some access to sound for all of my girls, and with a recent new trial of aids, significant access has been achieved with my other two.

Traditionally for children, cochlear implants are used to give young children access to sound to enable them to develop speech. The spectrum of outcomes is wide, depending on a number of factors, such as the age of implantation. The current recommendation, says that the earlier the implant, the better the outcome. I’ve met children with very varied outcomes, from children who haven’t developed a single spoken word, to children whose speech sounds exactly like that of a hearing person. The sound that they access is very artificial, which requires significant auditory and speech therapies to maximize benefit. For most deaf children, continued support in school, whether it be through FM systems, smaller classes and an accommodating teacher, is needed, as hearing in a noisy environment is often challenging.

Our family has viewed access to sound as a piece of a larger pie. We view an amplification device, simply as a tool to do this, and up until now have opted for hearing aids. Another piece of the pie is language and communication. This has been something that we have prioritized as this is directly related to brain development, and I’m so grateful that early language intervention has allowed us to catch up and then optimize this. Through both spoken English and South African Sign Language (SASL), our family communicates about anything we like. A blessing that I appreciate more than words could possibly express. Other pieces of our holistic pie include, education (both formally and informally), family relationships, self esteem and emotional well being etc. With understanding, that whilst these can interplay with another, there are different ways of approaching every area, to see each and every one of my girls reach their full potential. I am in full appreciation that no access to sound need not hinder this at all. However, if they are able to, I am willing to assist that process. Because I have been able to separate our amplification choices and communication choices, embarking on this adventure has been far less stressful than what I have witnessed in the lives of fellow parents. If my daughter speaks beautifully, all well and good, if she doesn’t I will not be disappointed. Her ability to access sound, makes her no less whole, in my view.

So why is my baby under several layers of sterile draping as I type this?

She is an exceptionally sporty child, and as parents who have opted to achieve access to sound within our financial means, there have been a few times whilst she’s been out on her bike, where I’ve thought, “Mmmm, some sound access would make me feel a little more comfortable about her safety. If we could find hearing aids that could achieve this, we’d certainly invest in them.” This has been mulling around my thoughts for about 6 months now.

As last year progressed, it became evident that my other two daughters were accessing more and more sound (I put it down to language stimulation facilitating brain development). During the recent school holidays, I heard a cow bellowing in a nearby field. I drew the girls’ attention to it whilst I cued, “Moo!” After poising to listen, Tahlita and Eden said that they could hear the cow, and took great enjoyment in trying to be the first to scream out “Moo!” as soon as they heard the cow mooing. This is a difficult balance as a mom with three deaf girls, as whilst I try to improve their listening skills where they can access sound, I never want them to think that it is a bad thing if they can’t hear. Hadassah listened and listened and admitted that she couldn’t hear the cow, so we all cued ‘Moooooooo’ over and over so that she could ‘see’ the sound. My girls have friends who use CIs, and have often asked me why some of them have CIs and others have hearing aids. I’ve usually explained to them that CIs are like strong hearing aids that need an operation. With this in mind, whilst strolling along a mountain path during the holidays, she stopped me and explained in SASL, “Mama, I think I want to have a cochlear implant. My hearing aids don’t work.” Not expecting this at all, I stood looking at my gorgeous, intelligent and mature 5 year old, beyond grateful for our ability to discuss this without limitations in communication, and thought, phew, this parenting journey has many unexpected turns.

Over ice-cream later that day, I asked Hadassah to share her request with Dad and her sisters. She did so, as they all sat quite surprised. My littlest shuddered in disapproval of the idea of having a “cut” in her head, whilst her twin sister nodded at Hadassah’s desire, she was sure to express that she didn’t want to have a CI (but did want us to change her hearing aid casing to her new favourite colour, gold). We left it at that, whilst I realized that this was a leg of our journey which we were soon to embark on.

One thing that these past few weeks has allowed me to appreciate more, is just how tough decisions can be for parents. Everywhere you turn, you feel like you need to defend a choice that you’ve made. Whether it be about defending SASL to people who still see it as an inferior mode of communication, and in innocence and out of ignorance, ask things like, “So does this mean you won’t have to sign anymore?” From my side, it’s almost an instant reply of, “We WANT to sign too, we are a bilingual family, just like Afrikaans and English families don’t need to make an either or choice, and honestly, I’m letting my kids lead me as to what works for them…” And then there is the strong disapproval about the CI from others. Some people view this as excessive intervention and even equate it to child abuse. I do feel this a strange concept, considering their acceptance to the use of hearing aids; she’s still profoundly deaf when amplification is off. Strong opinions on either side, the parent caught in the middle with the simple intention of wanting to make the best choices for their child. Another day in the life of a parent whose child is deaf. Live and let live, let’s stop being so quick to judge, whether about communication mode or amplification device!

I must admit, that I did not expect that my girls’ active involvement in the choices for their lives would start this young. It has been wonderful to talk her through each and every step, and have her express both her excitement and anxiety.

I have had many questions being asked over the past 2 weeks. The first; “How are you feeling?” She’s been so very excited, and so for her sake, I’ve been feeling excited. And then, although rather uncommon, there are potential complications, and the thought that I could be placing my child at risk for these for an elective procedure, has left me feeling a bit sick at times. Doubt is a familiar foe on this parenting journey of both deaf and hearing children. Between oscillating from one extreme to the other every now and then, I have had a sense of perfect peace. Peace in knowing that this really is her choice, peace in knowing that her language development journey is well on track, and ultimately in knowing that actually, I’m not in control.

Another frequent question has been, “So what is the success rate?” I never know how to answer my lengthy monologue in just a few short sentence. Firstly, the defined success as “speech” is dependent on so many factors, but secondly and more importantly to me is, what is true “success”? If she doesn’t ever speak clearly but accesses sound, does that make her a failed case? So, as you can see there is no simple answer. This question also reminds me of one of my favourite quotes that happens to be proudly South African, “May your choices reflect your hopes, not your fears.”(Nelson Mandela) This choice is one where we hope she will access sound, just like her sisters do with hearing aids. We do not fear for her future, should she never speak.

On this journey, there are many times of making decisions concerning many uncertain outcomes, many meetings for accommodations, many times where we advocate, and many times of hoping that my lead is adequate. There are also times, which will increase as they get a little older, where I follow their lead. What is working for them? What will equip them to be their best? What choices do they want for themselves? This is often difficult, as it sometimes requires letting go of my initial ideas of how things might work out. A journey filled with surprises, scenic twists and turns whilst taking one step at a time. Our hope is centered on trust. Trust in knowing that all things will work together for our good.

It’s going to be a very hands-on next few days, followed by the “switch on” in about a month. Thereafter, a long journey of learning to to interpret the sound as meaningful information. More than ever, am I grateful for language. More than ever, am I mindful of the dynamic nature of this journey.