Wet shoes

Once we learned of the twins hearing loss, one of the major considerations that we had to make was by what means we were going to communicate. Initially, my assumption was that amplification with the use of hearing aids would be the answer. “Turn up the volume and they’ll be able to hear what we say,” kind of reasoning. That together with a bit of lip reading here and there would do the trick. Well, so I thought. In the initial stages of grief, I was trying to hold onto my previous perception of “normal”. An attempt of preserving my illusion of still being in control of my life and situation. The idea of teaching them sign language was not a place that I wanted to go. That would make them “deaf” and they weren’t, they just had “hearing issues”. Denial: a normal and very necessary, yet fruitless phase of any grief journey.

Once their hearing aids were fitted, we were all hoping to see a sudden marked improvement in their spoken language. Hadassah did start responding to sound more and did start trying to vocalize a fair amount. She’d try so hard and get so frustrated that in spite of her best effort, she still couldn’t make herself fully understood. I then started to appreciate that they needed to learn to listen and learn what certain sounds actually meant. So at every opportunity, when there was an interesting sound, like a noisy bird, or ambulance siren, we’d stop, draw the attention to the sound and try to help them to listen to and engage with it. There was definitely some improvement, even just after 4 weeks of practicing listening.

Little Tahlita was endlessly frustrated. She’d try to communicate something and fail, end up in tears and often on the floor kicking and inconsolable for a while. Then after literally going through a spectrum of possible causes for this outburst, from being hungry to wanting a dirty patch on her beloved teddy cleaned, we’d know we’d ‘hit the nail on the head’ when whatever we were trying in order to meet her need at the time, resulted in hysterical giggling. An expression of relief that we had finally understood her. The aural –oral approach to communication was not working for Tahlita. Granted, they had only had their hearing aids for a short time, but I finally reasoned that one, I did not want to waste further time in their acquiring language and two, my relationship with Tahlita in particular, was threatened by our inability to communicate and the frustration that followed.

I’d spend hours a day trying to teach them the words for colours, numbers and common nouns like animals. This was a fairly slow process. We just could not get colours right. The only colour that seemed to make an impression was “yellow”, and so we’d start with yellow and then try to move on, but that’s where it always ended. This is probably because their dad’s favourite colour is yellow, and so they have been exposed to the word associated with his clothes and other things of his, since they were very little. Hadassah’s efforts to vocalize, saw her acquiring new words at a faster rate than Tahlita, but most of them were not pronounced very clearly, and she often got the names of things confused. Frequent offenders were the words “moon”, “balloon” and “blue”. In her little world, a “balloon” lit up the night sky and she was so excited to choose a “moon” at a birthday party. I started making up signs to associate them with words to help the process. They were just gestures, not really official sign language signs, which again would guard them from being labeled “deaf” in my own mind. Some of our gestures e.g. that for “ice cream” and “giraffe” incidentally turned out to be the same official signs in South African Sign Language (SASL). And what we were finding, was that the combination of signing and speaking, was working! After ONE word “sandwich” of “ice-cream” (meaning, we’d say the word, then sign it, then repeat it orally) Hadassah cottoned on to a good thing. The first time she said “ice seem” whilst signing it, her efforts were celebrated! The reward – a sweet frozen treat for all 5 of us! No surprises that “ice- seem” became her new favourite word, which was usually accompanied by her two sisters’ excited bright eyes and their signing for ice-cream.

It was really only after Eden’s diagnosis, that my “acceptance” of my lot as a mom of 3 deaf kids took place. Some people may term them “hard of hearing”. These terms, I find, can be confusing, especially to friends and family who are trying to decide if their hearing loss warrants anything out of the ordinary. The bottom line is – their ears don’t work. With hearing aids, their access to sound is better, to what degree, we’re not yet sure. Will this progress to bilateral profound deafness? Maybe, but maybe not. Will they have similar access to and perception of sound? Again, I’m really not sure. So to keep things simple, and as a part of the “acceptance” process, I call them “deaf”, as they each fall within the spectrum of deafness. Another surreal moment involving this initially intimidating word, was when we visited the deaf school for the first time. At the entrance was a big sign that called it a “school for the deaf”.

D-E-A-F

A very much “Welcome to Holland!” moment. This was my new reality. It was only after meeting other deaf people, that this word didn’t seem so scary. My girls are deaf, and it’s okay. With accepting this fact, came my acceptance of embracing a total communication approach which involved embracing SASL. (Total communication is basically a mixed means of communication; spoken language, sign language, gesturing, pictures etc.) Initially, I was extremely daunted by the task of learning something very foreign. After a bit of an emotional wobble, I decided that we’d continue to take one day at a time and one sign at a time. So we started with the sign “flower”, as this had been Eden’s favourite word. Every day we learn a few more. I am still a complete novice, but am now enjoying learning how to sign. I’ve also had to deal with a few pride issues of “looking silly” as obviously I get signs wrong at times, or have to stop and think of what my next word looks like, or sometimes I just suddenly forget one that I thought I knew the night before. Every language takes time to learn, sign language is no different.

After 5 short weeks at the deaf school, they learned their colours!! It’s now become a fun game. Each time we come across a group of things that are various colours, the twins get so excited for me to test their memory. Little fingers jiggle away whilst words are also shouted out. This happens at an incredible speed! Concept colours: ACHIEVED! Their use of numbers purposefully, and their acquisition of common nouns, has accelerated since we have embraced this total communication approach. It’s so cute to see them now teaching Eden her colours, and really, this hasn’t taken very long. It’s also very interesting to find, that the more Tahlita signs, the more she speaks. When either of the twins are feeling shy or uncomfortable, they opt to communicate with signing. Eden loves signing, “thank you,” so often comes across as the most well-mannered toddler on the planet.

A very special moment for me was only 2 weeks after starting to learn to sign. We were in the shopping center, and Tahlita started fussing. Usually this spirals into a mess as I described earlier. I took a deep breath as I felt our family attracting the attention of other shoppers. I looked my daughter in the eyes and signed “What?” With a frown on her face and a look of distaste, she made two sequential signs: “shoes” and “wet”. It had been raining, and the dampness of her closed shoes had finally soaked through to her socks. Her shoes were wet, and she didn’t like it. In an instant, the problem was identified and addressed. Tahlita’s frustration eased, and the realization that she was understood brought a confident smile to her sweet little face, and an even bigger smile to my face. We had just communicated effectively for the first time, even if it was just about a pair of denim shoes.

One of my biggest challenges on this journey, is that of being flexible. This is not something that comes easily to me. I’m a planner. I am an expert list maker, and I’ve even made lists for my lists. Being able to neatly “tick” off a box is something that brings me pleasure. Bizarre, I know! It would be fair then to describe myself as fairly inflexible…well up until this new chapter of my life, anyway. As time goes on, the girls’ hearing may deteriorate further, and signing may be a dominant means of our communication. Their amplification may be very effective, and a mix of spoken and signed language may always be the way our family communicates. Hadassah may excel in oral language and choose not to sign when communicating with me. I just don’t know what each of their individual paths may look like, and I have the task of creating some kind of common ground. I’m going to need to become an expert at being flexible. “As flexible as fluid,” is a motto of an organization that I admire… as flexible and adaptable as fluid!

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9 thoughts on “Wet shoes

  1. It has been so exciting to witness the girls growing in confidence and communication ability. The total communication approach is working really for the girls at this point in their journeys. Well done to all of you! You’ve all leant so much in such a short time.

  2. I can’t for a moment imagine the anguish you and Graeme have been going through. Our prayers are with you as you go down this unfamiliar road. I truly believe that from every bad situation something good will come and you and your beautiful girls will arrive triumphant on the other side.

    • Thank you Noeline, it’s been a rollercoaster ride for sure, but by some miracle, the unfamiliar is feeling less and less terrifying as we trust God to lead us and thank Him for the help that He has provided for us!

  3. Thanks so much for allowing us to share this journey of discovery with your family. I felt so excited for you when Tahlita expressed her discomfort of having wet shoes so perfectly and you understood what exactly she wanted to tell you. It gives me inspiration to keep on assisting other families with children who are deaf. I want all our Hi Hopes parents to read your blog and feel similarly inspired.

  4. Wonderful story about the shoes! Each day I’m sure will bring new triumphs! Is there a website that explains SASL? Like a thesaurus/dictionary/how to learn pointers? I’d like to take a look. Looking forward to the next story!

  5. An amazing journey for you all and we love following it with you, through all your ups and downs. Keep praying for more ups than downs, so sure with a Mommy like you, it will get easier for you all.

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