“You can’t stop the waves, but you can learn to surf,”~ dark time communication

Before the twins were born, I literally studied a variety of books about helping babies sleep and be content. I studied them and would’ve aced any written exam. Then they arrived. Enough said. I distinctly remember staring at the dark grey smudges that sleep deprivation had sadistically smeared under my eyes, realizing that for the first time in my life, ‘preparation’ had actually set me back for reality. Instead of guiding my every step, in my situation, the books that I had read, only left me feeling more inadequate, as they made sleep techniques etc. seem easy, which wasn’t what I was experiencing. The one piece of advice that I persisted with and took seriously was that of keeping their bedroom pitch dark. I persisted with this and after practicing military-like routine, and night time total darkness, we had sleepers from 5 months old. They slept through until the age of 2 when Hadassah suddenly started waking frequently at night. Eden has her moments, and since our move to the ‘city’, has needed reassurance most nights. The three of them insist on sharing a bedroom. Thankfully they’re deaf, as the night time fussing doesn’t wake each other.

Having trained my girls to associate darkness with sleep, I soon realized my challenge. When they wake at night and need me to reassure or question what the problem is, I’m now dealing with deaf-blind children. Their sleep is very sensitive to light, so I can’t just switch on the light as it will wake the others escalating the chaos. Even my cell phone light or torch light often cause the others to stir. I do use my cell phone none the less, and have to continuously remind myself to shine the light onto me, so that they can see my hands and face, rather than the automatic action of illuminating the one doing the fussing.

A little while ago, I realised that I could sign on their bodies or move their hands passively to communicate when they are unable to see. My mentor also demonstrated to me how I could improve this. Hand in hand, total darkness, I can sign most of my current signing vocab through movement and touch. I needed to train them a little, so that in the pitch dark at unearthly hours, they don’t suddenly freak out when I grab both of their hands, but rather understand that I’m going to “talk” to them. Tahlita loves this so much that it has become a fun part of our bed time routine. After kisses and snuggles, “I love you’s” and tickles, she rushes me to switch off the lights. In a moment, there is darkness apart from the few glow-in-the-dark stars that cling to the ceiling. I feel my way back to the side of her bed, and we have our “dark time whispers”. Hand in hand, we say good night, she’s reminded that she’s loved, beautiful and precious and then we may chat about the odd random event. She giggles, squeals and moves my hands as she signs back responses. This is always finished off by her throwing her arms around my neck and plastering a long kiss on my cheek (or nose if we miss judge our positions in the dark). This is a special time for Tahlita that makes her feel loved.

Had I known when they were born that they were deaf, I would have trained them to sleep in a lighter environment, as I’m sure that waking up without the sense of sight when you’re already deaf must be quite scary. Eden woke up the other night and signed to me that she needed the toilet. After a quick trip to the loo, she was soon asleep again. Previously this would have become one chaotic night of recurrent awakenings and frustration. For now, our “dark time communication” is doing the trick, and the three of them are starting to sleep a little better. Trying new things and being willing to adapt –  for now, I’m experiencing that these things, are key to the enjoyment of the parenting journey of deaf children.

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THRIVE – the start of something new

Thrive (1)

 

 

 

 

Over the past year, I’ve crossed paths with families that are on similar journeys to mine. Our paths have literally just crossed for merely a few moments in audiology waiting rooms, ENT waiting rooms and school car parks. Although strangers, the little C-shaped gadget draped over their child’s ear, results in an instant connection, even if only for a few moments. That mom knows what I’ve been through, she’s felt the same feelings of anguish initially. She’s spent many hours coaxing her child to wear their hearing aids or implants, and shared those feelings of desperation when the technological side of things is not going so well. The sound proof booth is a familiar place, and her Thursday afternoons are also spent in speech therapy whilst her friends’ kids attend ballet and karate. That dad can identify with, the gazillion opinions from professionals, and sometimes even friends and family, as well as the time spent on the mental lists of pros and cons and costs of the many decisions that we need to make for our children with hearing loss. Sure family and friends will rejoice over victories like communication, new words or signs. But my heart will truly rejoice with yours, fellow parent, as I feel your relief, since those milestones reached, were my concerns also. You’re a parent of a child with  hearing loss and so am I – that is enough to connect us. You need not feel alone on this journey.

After returning from the Austrian FCEI Congress in June this year, I was so much more appreciative of the value of parent-parent support. Confident parents are powerful initiators of change. Sharing the journey of having children with hearing loss is a very real source of support, comfort and encouragement. In Austria I witnessed that this can be true for families irrespective of the mode of communication or amplification devices…what’s more important is what such parents have in common…the grief, the decisions, the biased opinions, the appreciation of communication and the desire to see their child reach their full potential, in spite of a situation, that can often see them being marginalized in society. After asking lots of questions and listening to many stories from parent leaders from all over the globe, I was inspired to get something similar started in the area where I am living.

THRIVE is that start.

“thrive – a verb, describing the vigorous growth of something; to prosper; to flourish; to succeed; to bloom; to make steady progress.” A word that to me, encompassed an abundance and fullness of life that overflows into every aspect of the family unit.

Our first official “THRIVE” meeting took place last week. It was mostly a social time that involved us all briefly sharing our stories as well as aspects of our deaf or hoh children that we absolutely celebrate. It was a wonderful afternoon, and I so look forward to the next meeting.

This was also a time where we discussed some core characteristics of THRIVE. I feel that the primary characteristic is that of being unbiased. Whether you speak, cue, sign or a combination of that, THRIVE welcomes you. Whether your precious one adorns hearing aids, cochlear implants or you’ve chosen not to use amplification, THRIVE welcomes you. Whether you’re opting for a mainstream education, or they are placed at a school for the deaf, or even trying something in between, you are welcome to be part of THRIVE. Our desire is to provide support to the whole family unit through supporting the parents on their journey together with paying attention to the individual perspective of the hearing siblings.

We currently have a closed Facebook group for parents only. Should you be a South African family that would like to make use of this forum for a means of support, please contact me by leaving your email address here as a comment, and I will be in touch with you. A webpage and Facebook page will also be available soon. A quote by Helen Keller best summarizes the vision of such a support network, “Alone we can do so little, together we can do so much.”

When considering the outcomes that I desire for my girls, it’s simple…I don’t want them to just check all the boxes of what the average person considers to be “normal”. I feel that that misses out much of the big picture. How are they emotionally? Relationally with each other and with Graeme and I as their parents? Do they like themselves? Have they been given the wings to show, the rest of us who think that we know what we want for them, that they can soar in ways we never imagined? My dream is to see my family and other families like mine raise the bar on expectations. Just surviving is not good enough, I want to us thrive!

Just taking time to enjoy the ride…

She sits behind, Nikki, gently bending her joint-less arms as Nikki becomes part of our conversation. Nikki loves me apparently, and wants to have some sweeties for dinner! Nikki is Tahlita’s special teddy bear, she got her when she was just a few weeks old, and since then, they’ve been inseparable. Well, we’ve had to set some restrictions. Nikki is generally not allowed to leave our house, and if she does, she has to wait in the car, as losing Nikki would be a loss suffered by all of us! She is now rather tatty, and her hip has needed repair several times by me (as the doctor!) whilst the little bear’s mother looks on in agony. Nikki is cuddled and loved beyond description, and is tenderly signed to. Signed phrases like “Mamma Tahlita loves you,” and “You are beautiful,“ are just a few that this beloved bear is very familiar with. I remember playing with my dolls and teddies. I’d have long conversations with them and play games, and often they’d need to share their thoughts through me to other family members and friends. They were part of the family, so needed to communicate with the family. The dolls in the Birdsey household are no different. They babble and chatter, and have been doing this for the past three or so years now, and are much loved members of our family. But Nikki, as well as a few other particularly loved creatures, has started to sign. Little rounded digit-less paws are no limitation. No-no, my girls are becoming experts at expressing the subtlest of details with a relatively stiff, stuffed arm. The facial expressions involved, especially to indicate intensity, are reflected on the faces of whoever is playing with them at the time. Full conversations are happening between Tahlita’s Nikki and Hadassah’s Benjamin, and just the other day, Nikki was telling off Benjamin for something or other whilst enthusiastically hitting behind her oversized fluffy ears to sign that he was being very ‘naughty’.

Its’ wonderful to see them play as typical four year olds and incredible to see the play, as I’ve experienced it as a child, be adapted to meet their needs. It’s also quite a strange experience in some ways, to see my children model something as fundamental as play, quite differently to what I know as familiar.

Tahlita in particular is also starting to ‘play’ with her language itself. She gets great pleasure in overly exaggerating a particular sign to uniquely put her point across and engage with her own quirky sense of humour. She had us all in stitches the other day when she was relaying back a story of a sick looking fish that we had noticed in the tank at a local shop. We know the sign for “sick” to be shown by using one middle finger to touch your forehead whilst the other hand’s middle finger touches your abdominal area simultaneously. Tahlita was relaying the story of this floating fish with such enthusiasm, that she knocked herself over from the intensity of her signing. Well, Eden thought that this was hysterical, and since I now have a little video clip of this story on my cell phone, I use it to brighten up the mood of my toddler who has now hit the “terrible-twos”, whenever I’m feeling desperate.

I guess these little developments are the very things that ‘enjoying the ride’ of this journey is all about. It’s so easy to get swept up into focusing on the future goals and mull over some of the bigger decisions that we face. These little details almost seemed too minor to share, but these are the things that colour each day. These are the little fragrant ‘roses’ planted along my journey for me to enjoy. For me to notice, pause and breathe in slowly. Reminders that my girls are different, yes, AND extraordinary, funny and unique!