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.

Why parents of signing children don’t learn sign language: my perspective.

I read an article the other day about why hearing parents of deaf children don’t learn sign language. I’m sure that there is qualitative research out there exploring the “why?”, this may be the case for many families. The statistic that was used in the article suggested this was true for the vast majority of parents.This particular article concluded that the reason is quite simple; that parents just don’t want to communicate with their children. Whilst this opens up some interesting food for thought around quality of communication and loving relationships between parents and children irrespective of their hearing status, I do want to share my thoughts as to why I can imagine that families with deaf children who use sign language as a communication modality, might see the parents not learning sign language fluently enough to communicate adequately with their deaf child.

Statistics globally indicate that over 90% of deaf children are born to hearing parents. For most of them, this would be the first significant interaction that they would have had with a d/Deaf person. This is not the same as meeting someone Deaf socially or informally. A social setting may see curiosity, an appreciation for diversity and a sense of intrigue regarding sign language, spark an interest in sign language. One, that if nurtured, may grow over time, and see the learning of sign language being pursued. This is usually a fun process; there is no real pressure, and your interest and enthusiasm has empowered your own choice to do so.

For many parents, this is not the case. Parents are often still immersed in the overwhelming reality of this new journey, where their grief can last a really long time, if the right support is not received. The grief stage of “denial” can become a prison, seeing a parent not in a place of empowerment to take purposeful steps forward that require effort and acceptance, such as the learning of a sign language. This is not something where you feel the freedom of taking as long as you need to learn, but there is a definite sense of unwelcomed pressure; conflict between wanting to for the sake of your child, and not wanting to because you would rather not have a deaf child in the fist place whilst complicated by a lack of confidence in your own ability to embrace something this foreign. I felt this struggle inside of me when first embracing the learning of sign language. I’d see people communicating in sign, where signs often looked so similar, and yet not, and thought, “Phew, this is just too hard.”

When considering learning sign language as part of embracing a total communication approach as a desperate desire to immerse my children in language, particularly because they were already 3 years behind due to late identification, one of the first things that came to mind, was what a school teacher had once said to me. “Bianca, your strength is in the sciences. Languages are just not your thing.” At that very moment, no algebra or chemistry mattered to me, but my insecurity in learning new languages was a very real battle in my mind that I needed to fight. My academic gifting may not be in languages (well, that’s not to say whether she was right in the first place; I’ve learned that school grades are not necessarily related to ability or enjoyment for that matter) but this time, my “aptitude” tests were not related to what I was now tasked to do. I was going to have to find strength in my weakest areas, and I can assure you that I fought the process, at least initially.

Having reflected on what got me through my mind-war, and allowed me to embrace the learning of a sign language (a journey that I have by no means mastered), I have an appreciation for why the task is often just so daunting for parents, which I feel is a large reason as to why many parents don’t learn to communicate fluently with their signing child.

One of the first factors for me, was flexibility and placing my child’s needs before my own desires. My first communication choice was pure oralism; spoken English. This was all I could deal with initially, as the consideration of South African Sign Language (SASL) was just the cherry on the top, of a situation that seemed too big for me to handle. As time went on (not a lot of time but a few months), I had to swallow a very bitter pill; the realization that my choice was not working…yes, this very same choice had worked for many a child with a hearing loss, but was not working for mine. I realized early on, that the delayed acquisition of language really was comparable to a form of brain damage. Yes, cringe, I used those words! “Cognitive delay”, “speech impediment” all these medically and politically acceptable terms are wrapped so carefully as not to offend. The problem is, that if professionals and parents, do not really “hear” the raw ugly truth beneath this palatable wrapping, the child’s intellectual potential is at stake, not to mention the socio-emotional consequences that affect every area of life. So, having admitted to myself that very slow – inadequately slow, language development would have been the result had I pursued the desires of my heart…I reluctantly pried my eyes open, and realized that my child is needing something that feels too hard, too foreign for me to embrace. Do I turn a blind eye to this, or do I brace myself for the anticipated icy emersion of something that scared me. Remember, grief whispers to most hearing parents, “this is too much for you”, and “having a deaf child is a bad thing.” And of course, with acceptance, phew, I couldn’t be more proud! What a privilege and honour to mother deaf children! But during the time of sadness, it also felt like the embracement of a sign language, kind of made them more “deaf”. I’ve since figured, deaf is deaf, whether you speak, or sign or are amplified in whatever way, you’re d/Deaf…but different people just do being d/Deaf differently. DECIDING to be flexible…this was not a passive process, was my first step in learning SASL.

The next step for me was constant, careful encouragement. My very first SASL “lesson” was in the living area of a B&B the morning after Eden’s ABR. I had decided that sign language was something I wanted to try, so asked for some assistance. Tears rolled down my cheeks, as my mentor taught me my first 4 signs; “mommy”, “daddy”, “bird” and “flower”. The realization, that this process really was going to be, a one-sign-at-a-time journey and not something that needed to be downloaded into my brain in its entirety, was a reassuring discovery. Our family was on a journey together, one that would enable us to get to know each other better, and one that helped me discover that simply, there is nothing sweeter, than the ability to communicate with your child. I have so much still to learn, and desire to grow and grow in fluency, but definitely think that the start was the hardest part. Now we have such fun with our sign language learning together. We are at the stage where I’ll need the sign for something, and not know what it is. I’ll turn to one of my girls who is the sharpest lip reader, and ask, for example, “What’s the sign for ‘prepare’?” and she’ll happily show me the sign..they love teaching me and they know that I love learning more from them, but mostly that I want to communicate with them. My littlest sausage enjoys playing with signs. She will know a particular sign, but change it, just to be funny or test me. One of her more recent games has been with the sign for “chef”. She knows the sign for “chef” quite perfectly, but every time we are discussing a chef for whatever reason, she signs “chef pineapple” and her little eyes light up as she does that, as she finds herself quite hysterical. Something that initially seemed like Mount Everest, has become a fun, unpressured journey of teamwork.

For me, the first SASL resource that I used made a significant difference. I had purchased a wonderful SASL dictionary,had been given a super SASL DVD (voice-off signing with captions), had downloaded a few similar clips and frankly, in spite of how great I view them now, when I was in the space of feeling so overwhelmed at the task at hand, I found these very difficult to learn from. The divide between the familiar and what scared me was just too big. I was given another DVD, this was a DVD conducted using transitional bilingualism. A hearing person, well experienced in SASL, was gently and slowly explaining the signs, saying things like, “the sign for ‘blue’ is this…(then demonstrating) it is kind of implying the blue sky….or for ‘green’…it’s similar to the sign for grass – green grass”. These sessions had intermittent words of encouragement about the process of learning SASL, and just about raising a d/Deaf child on a whole. This was the bridge that I needed. A bridge that allowed me to transition from a place off apprehension and insecurity, into the place a whole lot less familiar to me. Once I crossed that bridge, the conventional voice-off “native-user” SASL instruction, became something that I could embrace as the shackle of fear had been broken.

Most importantly on my journey of learning sign language thus far, has been the role of having a Deaf mentor or friend. Statistics show that the mentorship by a Deaf adult in the lives of families with deaf babies, allows for a faster transition between the grief stages of “denial” and “acceptance”. This is someone who is a glimpse of your child’s future. A glimpse that warms the heart..one that can recognize that, being deaf is not something bad, but rather something different. I’ve so appreciated the times my Deaf friends have afforded me; days on the beach where I’ve had to get over my insecurities and shyness, and choose to swim rather than sink, to many a chat over tea (somewhat cold tea as my novice signing meant for slow hands-otherwise-engaged conversations). These times have been more valuable than I could ever express, and have certainly assisted me, more than any resource, in continuing my SASL learning.

Many parents desire to communicate with their children, so much so, that this plays a significant part of the grief that parents experience when they learn of their child’s hearing loss. The perceived “loss” in not being able to talk to your child just yet, which was even more painful for me, than the “loss” in their not being able to hear. That coupled by the evident enormous frustration experienced due to difficulty in communicating, is further evidence to me that parents WANT to communicate. The challenge is, helping parents make child-directed choices for their children and then actually believe in their own ability in being able to learn to communicate with their kids, be it orally or in sign. Most of us are a little nervous of new things. When it involves your own children and impacts their future, nervous anticipation can be transferred to fear, and fear can be incapacitating. Let’s not only expect parents to be flexible on their journeys with their children, but let’s also embrace our own views, biases and preconceived ideas, and assist parents on their journeys, even if it means trying things that are unconventional.

I’m beyond grateful for what the pursuit of language has taught me. I’ve been challenged in so many ways, and realized, to quote Winnie the Pooh, that, “I am braver than I believe, stronger than I seem, and smarted than I think.” I truly believe that this parenting journey, is one of self discovery, as much as it is about child discovery; parents need significant support in this process. A process that can be wonderful.

3 Lucky Fish

“Mama, me Deaf?” asked my littlest a few weeks ago.

“You are correct,” I answered. I answered her with smiling eyes, as I want her know that I think that her being Deaf is okay.  In the beginning, the burden of arriving in unexpected, unprepared for, un-welcomed “Holland” made everything I said and thought seemed grey, and I certainly didn’t think that my girls being Deaf was okay. I would have done anything to have changed that. Anything. But change that I couldn’t. Despite any efforts to teach them to speak, they’d always be deaf and most importantly to me, is that they know that they are loved and accepted irrespective of their communication mode/s or audiograms. There was one thing that I could change,however, and that was the way we saw “Holland”.

“And Tahlu? She also Deaf?” she continued to question. It was evident that she was trying to make sense of her reality.

“She’s Deaf too.” I smiled back. “She’s Deaf and clever, beautiful and special, just like you!”

The inquisitive face lit up with the affirmation as she nodded to herself, as if to say, “Yes, clever…beautiful, yes.”

“Dassie? Is she Deaf or hearing Mama?”

“She is Deaf. The same as you and Tahlita.” I replied.

Hadassah joined the conversation, “Is Dada hearing or Deaf?”

“What do you think?” I replied with a smile, realizing what a compliment to her dad’s efforts at signing, her question implied.

“Hearing!” Was her confident answer.

“And you, Mama, you’re Deaf or hearing?”

“I’m hearing too, my Little Duck” I answered using one of her gazillion little nick names.

Then with a face filled with compassion, she signed emotively, “Mama, you are hearing, I’m sorry!”

Trying very hard not to laugh, both at the sweet face that evidently thought that being Deaf wasn’t too bad a thing at all, and at how this little conversation had unfolded, I was interrupted by a final summary from the little one who had initially started trying to piece things together.

“You and Dada are hearing; Dassie, Tahlu and Me, Deaf?”

“That is right!” I answered enthusiastically.

The smallest member of the family replied with a satisfied nod, and as her cheeks wobbled, she signed, “I’m a lucky fish!”

“You sure are! Sometimes Mama wishes mama was Deaf too, because then we could sign fast to each other and Mama wouldn’t have to stop and think first. But God made us all different, so please be patient and help me sign. I’m hearing and can help you sometimes, and you are Deaf and you can help me sometimes, okay?”

Holland you crazy place! I kicked and screamed as I set foot on your land, but all the while the little people that I love most like it here. Oh yes, I’ve grown to like it here too, sometime I absolutely love it, and sometimes I wonder what Italy’s like. But they like it, and I want them to like it, I want them to know that I’m not dreaming all day of “Italy”, but rather enjoying exploring “Holland” with them too.

When I introduce myself at seminars, I almost want to prepare the audience with a, “Now before I tell you anything about me, I want you to control your foreheads – do NOT frown!” Because as soon as the words, “three Deaf daughters…” have left my lips, there is an inevitable and painfully predictable synchrony of groans and a sea of furrowed brows. Like a mass assumption that there is something broken, rather than simply, something being different.

I often go on to challenging the medical model of disability, and challenge even further than “differently abled.” On so many levels in several different ways, my girls are truly ENabled.  I showed them a little video clip on my cell phone recently from a friend who had taught her little boy to sign. He had sent the girls a signed message. They giggled and signed “cute” emphatically as they watched on, and as the video came to an end, one of my girls giggled about how sweet and cute this little munchkin was and very flippantly mentioned that my friend’s floor rug was the same as ours. Huh? I hadn’t noticed the rug, or anything else in the somewhat darker and insignificant background of the video. I replayed it and had to strain my eyes in concentration just to spot the mat. Sure enough, we have the same taste in carpets, and noticing this detail, was utterly effortless on her part.

There are many more ways that my girls are extraordinarily enabled, I will share some of these another time. These three pretty much blow me away daily. The point is they are different, they like being different and I want them to know that I celebrate them being different. They also know that I sometimes find this whole journey hard, but not because of their insufficiency, but rather mine. It’s not that they can’t hear or don’t speak intelligibly sometimes, but rather that I don’t sign fluently yet. We’re on this journey together, a journey of living, loving, persevering, hoping, teaching and just being who we were made to be.

They are not flawed, not broken and nothing less than extraordinary. May they know that, love that and truly believe that different is beautiful.

(reference made to the poem “Welcome to Holland” by Emily Perl Kingsley http://www.our-kids.org/archives/Holland.html)