Life as a hearing mum raising a deaf child with CHARGE Syndrome
Life as a hearing mum raising a deaf child with CHARGE Syndrome
Three years ago I met a Nigerian lady called Efe. She had sold almost everything she owned, scooped up her 4 daughters and travelled over 3,500 miles (as the crow flies) to Derby to study business. Of course crows don’t actually fly from Nigeria to Britain so it was a considerable journey, and took a huge amount of guts and courage.
A local social worker asked me to invite Efe round for coffee as her daughter, Shalom, had recently been diagnosed as profoundly deaf and was the same age as Smiling flower. Shalom was four yrs old and had no language or communication. I picked up Efe at the Deaf school and she sat in my kitchen looking out at the sheds in the garden and asking; who lived in those? We were from different places…. but I knew from my time volunteering in Uganda that it was perfectly reasonable to expect whole families to live in houses the size of our small garden sheds.
Efe is a remarkable woman. She risked everything to give her daughters the hope of a better future. She completed her business course whilst caring single handedly for her four girls and working as a carer in a nursing home to put food on the table and pay the rent (she shared a two bedroom house with another family). Whilst here, Shalom’s deafness was investigated and she was offered a cochlear implant. Efe, of course, agreed. Who wouldn’t in her situation?
Meanwhile we, as a family, were being hugely impacted by their situation. We saw a lot of Shalom as she quickly became smiling Flower’s first true friend.We gave her lifts to school, she came to play, we supported them in every way we could. Shalom, got under our skin and began to feel like extended family. We all adored her and she slotted into our lives as if she was always meant to be there. She picked up sign language quickly and was starting to learn to speak with her implants.
And then Efe had finished the course, the visa expired and they went back to Nigeria.
That was two years ago. There is barely a day that goes by when Shalom doesn’t come into my mind, when I don’t think about her and her struggles as a deaf child in Nigeria. She is privileged to have an incredible Mum who has defied the stigma of disability in Nigeria and fought for her daughter. In addition with the help of family and friends in Britain we have funded her in a Montessori school who try their best to meet her needs. They are so grateful for this support.
But we are forgetting the crow… I recently saw this image in the National Geographic and was stunned by the way it projected the crows courage, determination and intelligence… In 2015, photographer Phoo Chan captured images of a bald eagle hunting for food in Seabeck, Washington, when a crow approached the flying bald eagle from behind, landed on its back and stayed put for a quick rest. McGowan, a biologist specialising in crow behaviour, says territorial birds don’t normally get too close, but this particular crow probably found itself in the eagle’s draft and settled in for the ride.
A friend of mine used to say that life doesn’t go in straight lines. Neither have I ever seen a crow fly in a particularly straight line… Shalom’s ability to hold onto her hearing certainly doesn’t have a straightforward path at the moment. The cochlear company give a three year warranty on their implants and this expired this month (August ’17). So no more sending broken parts off and hoping to receive a replacement in the post. One implant isn’t working as I write this and if the other becomes temperamental or is lost, Shalom will once again become completely isolated.
I often reflect on the morality of implanting a four year old girl, giving her sound for the first time, and then failing to provide for the maintenance of that technology. But this is the situation. These are the limits of a national, not international, NHS, and company warranties.
In contrast, my heart doesn’t have a limit on it when it comes to Shalom. I cannot but help to continue fighting for this girl who, with her beautiful smile and strong hugs, was the first to give Smiling Flower friendship.
This planet we inhabit is huge and Shalom feels so far away. But I know that people’s hearts can shrink this world into a place where three and a half thousand miles don’t count, where the privilege of being born into affluence can be used to give others freedom and opportunity, where our neighbour can be anyone, anywhere, that we choose to stand alongside. Big planets scare and overwhelm me but small worlds fill me with hope. If you are still reading I wonder whether inside of you there something of the spirit of the bald headed eagle. Shalom and her Mum really need a break, a rest from the stress of their limited resources. If you have £5 or £10 spare this month please click here and help secure Shalom’s hearing:
The summer holidays are with us and we are very much ‘out and about’. This is, at times, challenging and I wanted to share a typical moment with you, following on from the last blog.
Dovedale is an incredibly beautiful river valley in the Peak District. It is a relatively short walk from the car park, alongside the tumbling river to broad stepping stones at the end. We went with a neighbour this week and overall is was a fantastic morning – I got some time with a new friend and the children enjoyed throwing stones, feeding ducks and climbing rocks.
At the end of the walk I thought we’d treat ourselves to a bockwurst sausage and we joined a short queue to buy one. The family in front of us had two slightly older children. As I was helping Climber on with his shoe, Smiling Flower raced up to them and gave each child a forceful shove before bouncing happily on the spot. Before I could intervene the parents were firmly berating Smiling Flower and telling her not to push. Of course, she had no idea anyone was cross with her and so seemed entirely unrepentant. My heart sank. This happens in different ways almost every day whilst we are ‘out and about’.
Sometimes, I am in super mum mode. I can go over, smile, and say something like ‘I’m sorry about that, my daughter is just trying to make friends, she is deaf and doesn’t always know how to be gentle.’ At that point most people immediately smile back, get interested and ask how to say hello in sign. They then usually encourage their children to wave and smile at Smiling Flower. I leave such interactions with my heart swelling with pride for my daughter who, with direction, gets the ‘meet and greet’ right in the end, and for the great British public who, with direction, are invariably generous and kind in their response.
The trouble is, all this rests on the intervenor. At the end of the Dovedale walk this intervenor was tired. We are deep into the summer holidays and I couldn’t summon the energy to break through the negative barrier of the family in front. So, with frustration, I pulled Smiling Flower to one side and signed to her that she had been too hard and it wasn’t OK to push children and if she wanted to say hello she needed to tap people on the shoulder and then wave.
At this point she went over to the family again and stood there waving and grinning. That day, Dovedale was her jungle and she wanted to make friends with everyone in it. Sadly the family weren’t looking the second time and I didn’t have it in me to interrupt their conversation, explain my complex girl, and ask if we could try the whole interaction again…
Smiling Flower was no doubt disappointed and confused as I led her away from them for a second time. Thankfully, the sausage was thoroughly delicious and the excitement of it’s arrival changed the mood in our camp as we got sticky and happy with onion relish and red sauce…
Still, this moment has left me with these thoughts… I direct them to myself as much as the big wide world because I know I get frustrated with kids who aren’t ‘nice’ to my kids… But, I wish there was more awareness. I wish everyone knew that there is always a back story, that even ‘normal’ looking children may have a hidden disability or difficulty. I wish people didn’t talk to the top of children’s heads but got down and read their expressions and emotions more clearly. I wish people knew that if this type of interaction occurs too often it will result in low confidence and low self esteem for the child concerned. I wish disability awareness training was mandatory for everyone, every 5 years. Thankfully, in a few days, I will be back on top and we will also have the back-up of Daddy as we enjoy two weeks of family time. There will continue to be lots of pushing and poking but also some heart warming interactions and new friends made. In the meantime, it’s another early night to recharge for me. Sleep is my jungle juice :o)
This week, I was changing The Climbers nappy when Smiling Flower came through from our bedroom brandishing Pete’s book ‘The heart of Zen; how to foster emotional maturity’. This weighty tomb of knowledge was then precisely dropped on the Climbers head…. By the end of the indignant yelp, forced apology and exasperated sighs, it was clear that the heart of Zen was, for all of us, a work in progress…
Emotions are particularly hard for Smiling Flower; her’s are often exuberant rather than Zen-like. She loves to introduce herself to people with a winning smile and a tactile gesture whether that is a stroke of the head, a poke, or a slap on the shoulder. Normally a little bounce of happiness accompanies these moments. However sometimes it is difficult for her to make friends. Children with CHARGE syndrome don’t always get the rules around personal space and gentleness, or reading others emotions correctly. Her sensation of all that is physical works to different rules. I see the exasperation in the playground at times – especially when the smaller children are enveloped in yet another head hug…
So, I was delighted a few weeks ago to collect Smiling Flower from school and see her sporting a colourful ‘loom’ bracelet. She told me a friend had given it to her and as we walked to the car, her new friend came and walked with us, signing away to Smiling Flower. What followed was a weekend of loom craze as she embraced this latest fad. Not only are they beautifully colourful, but they create great proprioceptive feedback as they fit quite snugly on her arm. She is currently wearing 7…
I suggested we make one for her friend. She was reluctant as she thought she should wear all the ones we made together. Eventually she agreed signing: ‘we just have to give her one, right?’ We made it and took it to school. We then made three more for the girls in her class.
I have never given my best friend a friendship bracelet. Maybe I should send her a luminescent loom band… But in the last 12 months I have laughed with her, cried with her, cuddled her new-born baby and marvelled at her patience with and acceptance of Smiling Flowers boisterous cuddling of the same tiny baby. Friendship, in my opinion, is an awesome, incredible, enriching, fulfilling, and life enhancing experience.
We will need to put a lot of work in to help Smiling Flower develop her friendships; to read others correctly, and to foster a little bit of inner Zen. But I am hopeful. Smiling Flower is one of the most open people I know. She thrives on interaction and expressions of love. Her flamboyant enthusiasm for life will surely draw others in and given the chance she would make friends with everyone in her corner of the Jungle of life…
You can heave your spirit into a mountain and the mountain will keep it, folded, and not throw it back as some creeks will. The creeks are the world with all its stimulus and beauty, I live there. But the mountains are home.
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Last Tuesday started innocuously enough. We decorated cupcakes before breakfast, which inevitably lead to the cupcakes becoming breakfast as sneaky bites were taken and chocolate evidence was smeared around lips…. We were going to meet Aunty Catherine and cousin Zach. There was much excitement afoot…. Read More
Sometimes, something surprises you and knocks you sideways in a ‘that’s so beautiful I missed a breath’ kind of way.
I use facebook. It’s not usually beautiful. Its normally filled with me moaning about early starts, chest infections and how I dote on my kids… But the other day I signed in and this quote and picture popped up:
‘She stood in the storm and when the wind did not blow her away she adjusted her sails’
… Read More
I rather like watching ‘Grand Designs’ with Kevin McCloud. I used to love it. Now, having moved to our ex-council house in Quarndon I just ‘like’ it. Maybe, because our home is being transformed by my clever husband; into our own dream of simple, open, country living. … Read More
I recently discovered a wonderful video about sensory processing disorder (SDP.) Processing and approaching the world, through senses that are either missing or wired differently, may be Smiling Flower’s biggest challenge. So SPD seems like a good thing to learn about. … Read More
In a film I recently watched (Eat, pray, love) Julia Roberts sat in the ancient Augusteum in Italy and reflected – ‘One must always be prepared for riotous and endless waves of transformation.’ The Augusteum was orginally a Mausoleum for Augustus. It fell into ruin and was given many different uses over the centuries; a testimony to endurance and change. The scene and the words struck a chord in me…. Read More