Wednesday evening and I’m boarding a bus carrying a child sized Ernie doll. I get surprisingly few weird looks. I did try to stuff him in my bag but he didn’t fit. I’m not sure what’s a worse look… openly carrying around an orange limpy doll or a head emerging from a bag looking like he’s close to suffocation.
I’m doing part of a university lecture tomorrow. I approached my colleague who who will be doing most of the lecture, carrying Ernie under my arm.
‘Is it ok, if I bring him?’ She of course said yes but gave me that strange look.
It’s all a bit crazy really. I’m going to lecture a bunch of Speech Pathology Masters Students with a woman who has over 35 years of experience and a PhD and I have no qualification relevant to my working life and a stuffed toy.
For the doll I must give credit to a former colleague. She gifted him to me when she left. ‘Use him for training’ she said. It’s all her fault.
Of course staring at the back of his head on the way home I realised that Ernie has an issue. He doesn’t have a hearing aid or a Cochlear Implant. Unlike some of the other ‘props’ at work, Ernie is unaided. The bus turns the corner into Marrickville and I’m silently cursing my former colleague for Ernie’s poor device compliance. Maybe I can craft one up? Someone at work made a Baha (a type of hearing aid if you like), using an egg carton and some velcro. Then again… maybe not.
Tomorrow I’m going to talk about what I know about LENA devices (the thing in Ernie’s lap). This device I once heard described as a language pedometer. They can be used with children to capture a ‘language sample’ over the period of a day or so and then, once plugged in to some whizz bang software, have that language sample analysed to give indications of how much meaningful speech the child may have heard (speech that was loud enough and without significant background noise); how much distant speech, how much noise and how much electronic sound (such as TV). It tells you how many adult words were said and how many times there were conversations between Ernie and his carer. The technology still does my head in. It’s a tool which has the capacity to show parents of children who have a hearing loss that their child how many words each day their child is hearing and saying and how they – the parents – have the capacity to grow their child’s listening, language and speech by increasing how much they speak to their child during everyday activities and how much of that is in close proximity so the child can access the sound.
It got me thinking about my childhood. The device counts ‘adult words’. I’m not sure how it does it – some mathmatical algorithm I expect. I wonder what it would have made of some of the books my mum and dad liked to read me. Books with words such as ‘scroobious pip’, ‘moppisikin floppsikin bears’, ‘pobbles’ and ‘jabberwockies’. No wonder as a grown up I do slightly offbeat presentations inclusive of ridiculous props. Let’s hope the uni students have a sense of humour. Wish me luck.
This week Bruce turned 80.
I’ve never met Bruce yet I believe I have a strong sense of him. Bruce is a man who I see as – in the Australian vernacular – as a bloody determined man. Bruce and his wife Annette in the late 60s started their family. To their shock, both children were born deaf. Surveying what services were available in Australia to help children with a hearing loss communicate, Bruce wasn’t happy!
He wanted children who were deaf or hearing impaired to learn to speak, enter mainstream schools and take up mainstream jobs. As he believed there were no suitable programs in Australia for this, he started his own based on the John Tracy Clinic in Los Angeles.
Over 40 years later, I have the pleasure of working for The Shepherd Centre, the Organisation he and his late wife Annette founded. While they may have started using the John Tracy Clinic as a base, I suspect The Shepherd Centre has grown organically into a place founded on those principles but with a distinctly Australian bent.
My road to the Shepherd Centre has been a little odd. Unlike many colleagues who knew they wanted to work with children who have a hearing loss, my only career specification was to remain with the not for profit sector. When I first started there and people talked about the cochlea, auditory nerves and sensory neural losses, I used to say I’ve been working for 10 years with eyes, not ears!
Despite my initial bamboozlement – should that be a word – it wasn’t long before I found my feet and I must say a fascination and deep respect for what many of my colleagues do. Last week I got to join a group of masters students (soon to be speech pathologists) in observing an Auditory Verbal Therapy sessions with a 2 1/2 year old girl and her mum. While I know that both mum and Shepherd Centre staff member were working very hard trying to teach the little girl, at times, it was hysterical and just looked like loads of fun – not to mention mess! (My brave colleague thinks nothing of giving 2 1/2 year old children a tub of yoghurt or a bottle of food colouring). At one point I laughed so hard, I had tears running down my face.
My encounters with the children are brief – usually in the lobby, outside, or in the kitchen. (Although, the other day I was having a discussion with my boss when a little boy walked in unexpectedly asking for his pirate hat to be repaired!)
It was in the kitchen one day that I had a funny little encounters. I walked in to make myself a cup of tea to discover that a ‘therapy session’ was taking place in the kitchen. There was mum, two kids – a boy and a girl – and one of my colleagues. ‘We’re baking!’ the little girl excitedly announced as I walked into the room. Baking mini cupcakes actually. At this point I wasn’t sure if it was the boy or girl who had a hearing loss. About half an hour later, a host of other kids had arrived for a weekly group session. We were a bit short on staff, so I went outside to help ‘supervise’. (Yes, I know – me with children. I still feel more at ease with the furry variety!) There was the little girl and my colleague Jen icing the cupcakes. Spotting the aids this time, I knew it was the girl who had a hearing loss. (Many of the kids speak so well, that it’s hard to tell!)
‘Can I have a cupcake?’
She was engrossed in icing them, so Jen prompted her:
‘Are you going to make one for Lysh?’
And with that I was given a mini iced cupcake. I looked at the little girl’s hands. She had icing all over them.
Jen said to her ‘what do we do when our hands get dirty?’
Her response: ‘LICK THEM!’
Over the years The Shepherd Centre has helped more than 1,000 children develop spoken language. (Yes, you can see who the database person is! Unlike the pictures, I didn’t steal the number from their website.)
I have no doubt that Bruce ticked more than a few people off over the years in his dogged determination to establish a program which taught only speech, not sign. As for the people he annoyed, I daresay he wouldn’t care! Bruce and his late wife Annette, added another choice of service for parents and that can only be a good thing.
This week on facebook there have been a collection of stories about some of the children the Shepherd Centre has helped in celebration of Bruce’s birthday. There have also been a number of comments from Bruce’s family as well as past and current parents. I thought I’d finish this blog post with just one of them from a mum. (See The Shepherd Centre’s facebook page for more).
Happy Birthday Bruce 🙂 The Shepherd Centre is amazing. We wouldn’t be where we are today if we didnt have it….everytime i get a comment like “wow you would never know she is deaf” and my daughters latest public speaking award, we owe it all to you and the staff. Without you none of this would be possible.
Disclaimer: The above blog post contains my personal views and opinions and should not be attributed in any way to my employer. (It’s sad that we have to write such disclaimers in social media… but that’s a whole other blog post!)
I remind Andrew that when Pickle was little, he told me frequently how he couldn’t wait for him to grow up so he’d settle down! How quickly he forgets that we adopted Gesso, in part, to wear Pickle out. It has evidently worked. Pickle either sleeps far more than he did before, or we just needed a kitten to make us realise Pickle had lost some of his kittenhood. Now that Pickle has matured to ‘sleeping ornament’ status, he has the pleasure of added cat hair to numerous surfaces in the house. Previously, he didn’t sit still long enough to leave a ginger carpet trail wherever he went.
At the moment he is the only ornament adorning the house. We have no tree or decorations and I have managed to keep them out of my office (unlike last year when I was working at a different Organisation and they had compulsory desk decorating… oh yes, I remember I had to make ‘crocodile’ eyeballs from table tennis balls for the ‘aussie’ Christmas theme). This year there has been no ‘slowing’ in the Christmas lead up. Rather, we are all running for the end of the week, at which point we will all collapse and not from drinking too much Christmas brandy.
Just today there was a flurry of activity in the office with a news crew filming a cochlear implant ‘switch-on’. It was something to do with media activity aimed at increasing the awareness of pregnant women about CMV. Like toxoplasmosis, this is one of those conditions which have little effect on mum – perhaps a slight ‘cold’. Yet CMV can have a lasting impact on the child including, hearing loss, vision loss or development delay. A link was sent around the office this afternoon with one woman’s story. She makes a very good point. Most pregnant women these days are aware of risks associated with soft cheeses and some meats. Iron levels, alcohol intake and diet – all frequently discussed topics – but how often do you hear people talk about CMV? My bet would be not often enough. Hats off to her for trying to raise awareness. If I had 1 year old twins, a 3 year old and a 5 year old I think I’d be too exhausted to do anything!
Here’s a video which aired on this week about Jack, a little boy who loves guinea pigs, lady gaga, ballet and talking. When people think about children who are deaf, I doubt dancing and talking as passions are high on their lists of possibilities. Jack shows that it is very possible. By way of a disclaimer – I do work for The Shepherd Centre, however this is my personal blog and any views expressed here are my own. Please check out this gorgeous video and if you enjoy it share it among your friends.