Words: “Units of language that function as principle carriers of meaning.”(Online English dictionary)

Like colours with which a canvas is painted, so words can add light and life, or be equally as effective in casting shadow. For those familiar with the book “Personality Plus,” you’ll probably have answered many related quizzes reflecting the choleric, sanguine, phlegmatic or melancholic temperament traits that you may or may not have. As much as I really don’t like labels or putting people into preconceived boxes, I have to admit, that every time that I took the “personality check quiz” I came out as top student with a temperament reflecting 100% melancholy. Great, not what a melancholic wants to see! Consequently when the reality of deafness became apparent, my world clouded over with negative words. “Disabled”, “limited”, “impairment”, “imperfect”, “broken”, “delayed”, “unfulfilled”, “abnormal”, “tragedy”, were just a few that I used regularly at first, which added strokes of grey to the canvas of my reality. I mostly just thought out these words, but occasionally, when speaking to someone that I felt I could trust, they would flow out of me from a place of hopelessness. The thing is, the more I used these words, the darker the picture became, and the more I wanted to reach out for yet another shade of grey.

It required several key steps in helping me to see what was happening. Firstly, a friend would stop me mid-sentence and swap the negative word for a positive. “Let’s stop using the word ‘normal’ referring to what the girls do not have, but rather use the word ‘typical’ instead,” she’d encourage. Subtleties like these, I discovered, made a difference to the way I started seeing my situation. And then, of course, meeting deaf adults and realizing that the labels that I associated with the word “deaf” had no relation at all, also added a whole spectrum of new colours. I can’t pretend that my personality changed overnight through my own efforts of trying to see things through an alternative lens. A mega dose of grace has helped me to see things so differently in such a short space of time. Speaking and thinking using words laced with life has certainly added the hue of hope.

I have however become somewhat oversensitive to identifying words of grey. Not in a way that I become offended…I generally am not offended, as I recognize that those very words were words that I would have used just less than a year ago, so offence would be hypocritical, but as I hear them spoken, it’s as if they are highlighted in my head and made into a bigger,bolder font. And the kindest, most well-meaning people use these words, without any offence meant in any way at all. It does however make me think, that we probably don’t realize,just how significant every word that we use is – every word adds a brush stroke to the canvas of someone’s reality and future.

Recently, whilst taking notes in a seminar where a group of the nicest professionals on deafness discussed speech and language related to typical deaf kids, I found myself no longer captivated by the content of the seminar, but rather at the back of my note book jotting down all the negative words that I was hearing, all the words that were being used without any intension of being harmful. “Problems”, “worse”, “normal [I kept hearing my friend’s interjection of ‘typical’ every time this word was used]” “performs poorly”, “disordered” and “pathology” were just a few. I needed to arrest these words through recognizing them before they stained my thoughts and heart in any way. And the thing is that most of these words are the words used in literature, academic articles and text books related to child deafness. Their tarnish has become accepted as reasonable and ordinary. So how does one begin to attempt change?

I know this journey is tough, it’s my reality, and I am certainly not in denial of that, but what I have realized is that, the words that we use, are powerful. The words that parents hear can transform a perception of an overwhelming problem into that of an optimistic future; a situation of feeling isolated and short-changed by being dealt something “abnormal” to the discovery that actually you’ve been afforded the opportunity to embark on a journey that is just different to everyone else’s…the privilege of not been offered the ordinary, but rather an invitation to embrace a reality to pursue the extraordinary. Words make that change. Once they are said or thought, they become easier to use next time round, until eventually, they filter into our list of daily vocabulary that regularly add strokes of light and colour to our reality.

If I ,the girl who aced the melancholy check quiz, can change the colours of my thoughts and words, I sure do believe that anyone can! I’ve realized that change starts with me. Let’s start being mindful of our vocabulary, and slowly but surely, we’ll recognize the shaded words and then have the opportunity to trade them for something lighter and brighter. Let’s talk about deaf kids as being “extraordinary”, “exceptional”, “simply different”, “visually astute”, “capable”, “unlimited”, “gifted” and then highlight their individual excellent qualities. Let’s paint boldly with streaks of optimism and eager expectation.

Words, as the definition above states, bring meaning, and their meaning echoes into the future of the situations and people that they are describing. Our words have the power of predicting how the story ends, let’s really be mindful of that.

“In the middle of difficulty lies opportunity.” Albert Einstein

Last week I was very privileged to attend the FCEI (Family-Centered Early Intervention) Congress in, Bad Ischl, Austria. This was a platform for parents, professionals and deaf adults to meet, share and learn from one another. This was quite an experience for me as it marked my first venture off the African continent. There is not much in terms of parent-led support for families of deaf children in South Africa, so my primary intention was to connect with and learn from other parents from across the globe who have “been there and done that” as far as pioneering parent support programmes go.

During the flight on the way back home, I re-lived some of the conversations and experiences in my mind. I jotted down the odd key word or phrase, that reminded me of a particular conversation or person, in one of my several note books in which I had crammed as much info and ideas as possible during the course of the week. The moments that were particularly memorable for me were diverse…from spending an afternoon overlooking the snow-capped mountains and emerald valleys of lush Austria with a special friend and indulging in copious amounts of decadent ice-cream, to sharing thoughts, dreams and challenges with people from all over the world. The seminars and lectures were incredibly informative and satisfied the part of me that appreciates academia.

It was however, the connecting with other parents that felt particularly impacting. I attended a parent preconference session. About 30 – 40 parents from countries ranging between Mauritania in North-West Africa to various states of the USA, came together to share stories that included the very first moments of hearing about their child’s diagnosis to “wow” moments that saw everyone’s eyes light up with hope. We have all experienced different things, have been on this journey for different amounts of time, and endured many challenges that were unique to particular individuals. The differences between us may have been varied, but the overwhelming feeling was that of unity. Unity as parents of children with hearing loss, unity as parents with dreams for their kids and a unity as parents who have all heard the same controversies, grappled with similar decisions and survived with stories of hope. The impact of parent-led support was evident, not only through hearing the information relayed by several active parent leaders from across the globe, but simply through participating in a parent-only session that morning. I had to smile when realizing that there is an untold truth of universal speech therapy and audiology bribery –an after therapy ice-cream!

Lunch times and evenings provided wonderful opportunities to connect with individuals. There was much laughter, as life experiences were shared, and I so cherished every conversation that I was privileged to be part of. A conversation with a new friend has really given me a different angle at which I view my unique and precious family. She expressed how wonderful it is that we are a “deaf family with hearing members.” Our girls out number Graeme and I, which makes us a predominantly deaf family. Just seeing that differently left me with a new sense of belonging to “Holland”.

Another unique experience left me feeling very proud. Up until now, when I am introduced to people as being a parent of the deaf, the assumption is always that I have only one deaf child. That acknowledgement alone, usually sees eyes filled with pity at my “loss”. When I explain that actually all three of my daughters are deaf, the conversation always grows heavier as expressions of sorrow and concern are usually the norm. In the taxi that shuttled us to our hotel, I met a fellow parent from New Zealand. Deafness is part of her family, and the generational perspective has given her the lens of it being anything but a disability. Once introducing myself as the mother of three deaf daughters, her eyes lit up as she acknowledged that as being something wonderful. Now that was a first! It’s amazing how people can look at exactly the same thing and see something completely different. I liked her lens!

Something that I’ll remember forever was a keynote speech presented by a deaf lecturer from Gallaudet University. She is a psychologist and has a PHD and particular interest in Autism. Her lecture was presented in ASL (American Sign Language) and voiced over by an interpreter in English. She was captivating! If there was ever any secret concern still left deep inside of me that my girls were disabled in any way, this woman washed that clean. The confidence and fluency with which she presented her lecture surpassed most of the wonderful lectures that I have ever heard hearing people present. I have since emailed her to thank her for the opportunity to witness such excellence, and she replied with the encouragement to simply set my expectations of my girls high and to lavish them with love. This was just one of several interactions that I had with deaf adults, and left Austria with a heightened appreciation for the role that deaf adults play in the lives of families with deaf children.

I met the most respected professionals in the field of deafness from around the world. Coming from a medical background, and having experienced the often less-than-kind reality of the medical hierarchy, I was struck by the sincere kindness of these people, their interest in me and my girls and their love for families of the deaf. This was a very humbling and unexpected experience.

Through all my conversations, introductions, and moments to muse over Austrian cuisine, my three precious girls were continuously on my mind. As I described each one of them and recalled funny stories and tougher moments, I could see their little wrinkled up noses as they smiled, hear the cute way that they say certain things and picture their precious hands as they flit about expressing what’s inside of them. I certainly have been blessed beyond measure through the gift of my three deaf daughters.

I’ve come back excited to connect with families, one at a time, and explore how family – led support can take root in my diverse and beautiful country.

“Life is about using the whole box of crayons,”…trying something new…

A few weekends ago, I learned a new skill. I learned how to cue. Literacy is one of my top fundamental goals for my girls. In investigating other tools and methods to assist this, I came across “cued speech”. It is used quite widely in the USA and other developed settings, but is very new to South Africa. In fact, there is only one person in SA certified to do the training.

“What is cued speech?” Was a question that I posed to my mentor, our HI HOPES interventionist and ultimately the lady who does the training, whose details I was given on enquiry. I’m not sure that my explanation will do this very interesting system justice, but let me try. One of the facts that I was told that helped me appreciate the place for cued speech, was that about only 30% of the spoken word is accurately accessible through lip reading alone. An American scientist devised a system which uses eight hand shapes in four different position around or near the face, together with the mouth shapes of the spoken word, to make all the possible sounds of a spoken language look distinguishable from each other. These cues, together with the mouth shapes, then allow a 90-100% accuracy in the understanding of lip reading, an impressive difference, I thought. Cued speech, unlike Sign Language, is not a language in itself, but rather a tool that can be used to make a spoken language (English in our case) fully accessible to deaf or hard of hearing people. The more I learn about Sign Language, the more I appreciate that it is a complex language in its own right with its own unique linguistic rules. In embracing a bilingual, bicultural lifestyle for my 3 girls, SASL fulfils the one side of the balance beam, whilst cued speech may possibly serve as a helpful adjunct to the English side. This is an example that our teacher gave us. Stand in front of the mirror and mouth the words, “bat”, “pat” and “mat”. They look frightfully similar. We then learned to cue these three words and appreciated how a few added hand shapes, distinguishing the “b”, “p” and “m” sounds, can make these 3 words visually distinguishable. It kind of enables you to see the sound. Should this system work for us, it could possibly be a tool that could be used whilst reading or doing homework as a means or fine tuning their literacy.

After being briefed on how the system works and why it was worth at least investigating, a small team of us embarked on a weekend-long cued speech workshop. In about 14 hours, we had been taught the system through a series of simple games, stories and lots of practice. I found it really fun and so enjoyed challenging my brain to create a few new synapses whilst learning something very different. Our hosts were also extremely hospitable. I need to emphasize, that we may have learned the system, but were still very slow as fluency comes with practice. There were many moments of laughter as we’d find ourselves trying to cue one simple word and get stuck half way through whilst trying to recall the cue for a particular phoneme. Wwwweeeeeeeee eeeeendid uuuuuuuup speeeeeekkkkkkkki (what’s ‘ng’? oh yes) nnnng liiiiiiiiike thhhhhhhiiiiis. Our teacher was very patient with us as we practiced and forgot, and tried and got it wrong, then forgot again and then finally remembered.

Now the thing is, the girls won’t yet understand that we are using symbols to denote sounds. To them, a short cue, like in the word for “mamma”, will almost become like a new sign. Over time with more exposure and better fluency on our part, they’ll learn what the cues mean. Currently, we’re trying to find a way of ensuring that cueing becomes a part of their every day. We sign and speak and then explain the cue by showing them, “we SIGN ‘sorry’”(using the sign) then sign “we SAY ‘s-o-r-ee’” (and then cue the word). The thing is, that SASL is working for us as far as communicating goes, so introducing something new, when its use isn’t desperately needed at this stage, is quite difficult. In the afternoons, we read stories together. I’ve started introducing one story told using cued speech, and the others are signed (and mimed when my signing reaches its limits). Like signing, I can do preparation beforehand, practice the cues and think of how I would cue certain words. However, I’m still excruciatingly slow. We’ve also started cuing dinner vocabulary in the evenings when Graeme is also home to reinforce things. That’s working quite well.

Last week, during story time, I hadn’t thoroughly prepared the cued story, and tried to ‘wing’ it. Half way through the first paragraph, Hadassah put her hands on her hips, rolled her eyes and let out the biggest sigh! I was being too slow! After an apology to my wide-eyed trio, we continued the story in sign and everyone thoroughly enjoyed it in the end. Like anything on this journey, there’s going to be a lot of trial and error, practice and preparation, new things and mistakes. Some things will work, others won’t, but I reason, that all needs to be explored before knowing what will work best, the “sometimes you win and sometimes you learn” philosophy. I want things to be as fun as possible, so at the moment as far as the cueing goes, our cued stories are short and prepared in advance (but still currently rather slow).

Every now and then in the evenings, Graeme and I will cue to each other as practice. It’s always a laugh as we get stuck on a word and debate how we’d cue it, especially when it involves a word that we actually pronounce differently, which usually spirals into a discussion of who is actually pronouncing it correctly. Yesterday’s debate was over the word ‘usual’, which we eventually worked out after much deliberation. One afternoon recently, I thought I’d use a fun little tea party to practice a little cueing and expose the girls more to this system. We were having rooibos tea and sticky moist chocolate cake. Let me quickly add, that the cues involve touching your face (well at this stage anyway) mostly around your mouth and chin area. Let’s just say, that sticky chocolaty fingers and cueing practice, don’t make a fantastic combination. Our faces were covered in chocolate icing! A similar experience whilst enjoying some language involved with some crafting, left several glue finger prints around our mouths and chins….I’ve realized that I need to choose my activities wisely!

In a year or two, I’ll let you know if I’m any more fluent (it sure does feel as though it may take that long at least). Another example of being flexible, embracing the new and acknowledging that I sure don’t have all the answers. Another leg of this journey of trying to discover what works best for each of my individual girls, and what works best for our family as a whole. We were the first family to be trained to cue in South Africa. Let’s see how it works out…after all, “every accomplishment starts with the decision to try.”