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 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



This July marks two years of my journey of knowingly mothering Deaf children. I say ‘knowingly’, as all the frustration, unanswered questions and deep seated concerns associated with the many months before their identification, were all part of my journey too. I think as each year passes, I will stop and reflect; reflect on what is behind, take a few moments to be very present in the ‘now’ and muse over what this interesting path is hiding around its next corner.

What has the past allowed me to be mindful of in the ‘now’?

I am aware that the ‘little’ things are not little at all. No language, meant minimal bonding with my girls in spite of loving them beyond measure. We now are able to express our love for each other. I can remind them daily that they are precious, beautiful and loved, strong, smart and brave. Every now and then, one of them will look intensively into my eyes and tell me, “Mama, you’re precious.” My relationship with them matters, and had they been hearing, I may not have acknowledged it as a priceless treasure.

We are extraordinarily ordinary. Ironically, being comfortable with this makes us extraordinary. We live in a culture where anything less than perfect, just doesn’t cut it. We are so influenced by this, that exposing our brokenness, hurt, fears and the stuff that doesn’t work out as planned, leaves us feeling so vulnerable, that we’d rather risk normalizing the deep sense of isolation inside, than chance the sting of judgment and rejection. I’ve been broken, my everything seemed shattered, and it seemed like everyone was a spectator at my vulnerability. We now embrace that which is real, we stop and examine our feelings, and appreciate that some of the unpleasant ones are just as important as the more celebrated ones. We appreciate that people are hurting. The glossy airbrushed portrayal of ‘normal’ seems glamorous yet is intimidating. I’m so relieved that we no longer feel the need to live up to that, and in our freedom, able to engage with other people in their brokenness and pain. We are learning to keep things real, and learning that real can be quite perfect.

We are learning to listen. Here I’m referring to listening with our hearts and our eyes. One of the things that I admire most about my girls, is their ability to sense other people’s emotions and well-being.  They know that I am sad before I know that I am sad. They are attentive, and their example is helping me become a more attentive parent. Attentive to their needs, fears, frustrations, joys and dreams. Attentive to what they are truly communicating to me.

We are becoming resilient. We hope, we dream we try. We try harder and never give up. We know what disappointment tastes like, and have experienced the sweetest of hope. We expect people to say that we can’t…but we continue to believe that we can. We ‘can’t hear’, ‘can’t speak’ but we CAN communicate, we can learn we can be our best, and our best will be good enough.

We are becoming good at celebrating. We celebrated keeping the hearing aids in for a whole day, then our first signs, their first day at school, or first 4 word phrase … the first easy session in the sound booth. On this journey there are endless opportunities to celebrate.

We are learning to be humble. This journey is one of trial and error. What works today, may not work next year. What works for one may not be the right fit for the other. Admitting that I don’t have all the answers, is not easy; we want to know what lies around the corner. This journey will see countless decisions, some harder than others, but my hope is in knowing that all will work together for our good. The unknown need not be scary, but rather can be exciting.  Learning to say sorry to my girls has been a frequent lesson in humility. There is no two ways about it, parenting kids without language is tough, when they get language it is much easier, but still often hard. I’ve snapped and shouted and misunderstood, and have had to say sorry, many times.

We are learning to be brave. Making choices that may not be popular is not easy, setting my focus on my children and not the hundreds of other voices out there, has been uncomfortable. This has helped me make changes in other areas; address injustices and challenge the ‘norm’. In this process, I am being strengthened to be brave for others too.

There are so many facets to this journey that we are discovering; gifts so precious, lessons so valuable. This is not a reflection of what I’ve learned, but rather what I am in the midst of learning.  Trials develop character and character, HOPE.

Kintsukuroi. A Japanese art form that I learned about recently. I see this as a metaphor for my journey. A journey from being broken, and having Love pick up the pieces. A journey of being confused and feeling alone, and have Hope whisper that it’s all going to be okay. A journey that we continue, one day at a time, embracing the hills and the valleys. Kintsukuroi means “to repair with gold”, and is described as, “The art of repairing pottery with gold or silver lacquer.” The process takes time and precision. The process embraces that which is unpredictable – broken pieces are different in size and shape, you work with what you have; some vessels may have just a small chip and others may be completely shattered. This art form requires patience, and at times, may even burn fingers. The most significant aspect of all, as so simply explained, is the “understanding that the pottery piece is more beautiful and valuable for having been broken.” (this is the online reference for the photograph as used for this blog).

Cold Risotto

Baklava, Moussaka, olives and gladiator sandals…just some of the wonderful things that I experienced during my recent visit to Greece. Two weeks ago, I was privileged to attend the International Congress on the Education of the Deaf (ICED) in Athens. It was a busy week, full days of lectures and seminars which ranged from topics that I had already thought through to interesting new concepts, some talks that were heavily biased in one way or another, as well as some that were simply way above my understanding.

The actual conference itself, wasn’t the only reason for my excited anticipation during the preceding weeks whilst organizing my visa requirements. I was almost more excited about the people that I would meet, the conversations that I would have and the unlocking of yet another facet of the Deaf world, whilst re connecting with some of the friends that I had made at the FCEI in Austria last year. I won’t pretend that I didn’t look forward to sometime of exploring and shopping! Indeed, that had been budgeted for, and my girls had given me long lists of presents that they were expecting.  The long summer days, made late night shopping and midnight dinners doable in spite of the busy conference schedule.

I hadn’t anticipated that my fourth night in Athens would be my highlight of the conference week. I accompanied my friend to a special dinner hosted at the New Acropolis Museum. If you ever travel to Athens, this is a MUST do experience. History and culture are preserved through original sculptures and artifacts from the legendary Acropolis. An intriguing tour by two Greek archeologists (one in English, the other by a Deaf archeologist in Sign Language), was concluded by the invitation to dine in the museum’s restaurant. The illuminated masterpiece, the Acropolis itself against the sapphire sky, was our back drop.

People were finding their friends, and then choosing a table. As someone who prefers the familiar and struggles with “small talk”, I understood why this was the case. Feeling ever so slightly lonely, we found a table that was empty and chatted about the artifacts that we had just seen. A few minutes later we were joined by six other people. Without hesitation at being seated next to a stranger, they took their places at our table. At this point, my friend whispered over… “These are six of THE world’s most influential Deaf leaders.” She went on to explain that one was the President of the Gallaudet University, and another was the Chairman of the World Federation of the Deaf. My mind was consumed by the juxtaposed emotions of feeling completely honoured and excited to be spending the evening with these people, whilst terrified to communicate in Sign Language and nervous for them to discover that I was no one special in the Deaf World; mothering a bunch of Deaf kids being my only qualification.

My reasons for being intimidated by the Sign Language were multiple. Firstly, I have only been learning it for 20 months. Secondly, I was concerned about the expectations of people; might they think, “How could she possible be mothering her kids effectively when she is not a fluent signer?” Then throw the fact that they were not using SASL but rather mostly American Sign Language, in the mix, and gosh, that made for a stomach full of butterflies! Like losing my breath to the fright of icy sea water on sunburnt skin, I plunged in and introduced myself. Warm smiles and welcoming looks of intrigue slowly eased my tension. I told them where I was from and took great delight in discussing my 3 precious girls. I do however, struggle receptively with fingerspelling. The one thing that unites our languages, but man, as soon as someone starts fingerspelling – it’s as if I get a mental freeze. I can’t remember what the first few letters were, then pick up half way whilst still trying to remember what the letter before was, not knowing whether to spell it out loud or sound it out instead. Simple words end up becoming a finger spelling conundrum.

I admitted my inexperience and embarrassment and was embraced even more, and then for a few minutes I sat back, whilst bowls of steaming risotto were set before us, and observed.  The amazing thing about a visual conversation, is that you can tune into them from across a table without straining to hear. On the flip side, private comments to your neighbor, don’t exist. Everything you say is public, like it or not.

Zoning out to reflect on my own thoughts and feelings, and totally at a loss with most of the conversation at the table, I became very aware that this experience reflected that of a Deaf person at a table of exclusively spoken conversation. Even a Deaf person with access to sound through amplification, would struggle at a table with several conversations occurring simultaneously, whilst the din of background noise competes for the clarity of directed words. Limited access, limited participation, a potentially isolating experience. I enjoyed considering this for a few minutes as I was grateful for the opportunity to step into my girls’ shoes. I did not feel isolated though, as the atmosphere was inclusive. I was tapped on the arm and questioned about how much I was following. I admitted that I wasn’t getting much, but it didn’t matter. This engaging man, invited me to ask him at any point to explain anything that I was missing. I was stunned by the humility and kindness of this world leader. These people did not see me as an outsider, in spite of my difficulties with communication and short history with the Deaf World. My three girls meant that I belonged. As I relaxed, I was able to converse more, whilst having my hands preoccupied in conversation meant that, by the time it came to having a mouthful, my risotto was cold. I’d trade warm food any day for another experience like that.

A marble lane led us back to our hotel shuttle. The air was warm and fragrant. My heart felt full of appreciation. Appreciation for Deaf culture and for experiencing something new. An appreciation for my girls, and the gift that they have given me. The gift of belonging to a brand new world.