Signing Santa

Best. Santa. Ever.

Best. Santa. Ever.

IT’S THAT time of year again. Christmas is just around the corner and you can feel the urgency (panic) in the air and on the roads.

I’m steadfastly avoiding the chaos of shopping malls, except in the virtual world where you can shop at ease (and in your underwear) without being elbowed or causing a public scandal.

It was on one of my online voyages that I came across a magical initiative offered by a shopping centre in the UK called the intu Metrocentre.

Naturally, Santa was going to be dropping in to make a lot of generous promises for parents to try and keep.

And on two special Sundays, Santa would be signing to deaf children clutching their own dreams of bikes, superheroes and so much more.

I flipped over the sheer coolness of the idea, so unique in my experience as the parent of a deaf nearly seven-year-old who has reached peak Christmas excitement in 2015. I shouted my approval to the company from the rooftops of social media and to my delight, I received a wonderful surprise message in return.

How would we like their signing Santa to make a video message for our daughter Amelia?

Is the Pope a Catholic? You bet your life we would LOVE that, I replied. I was really bowled over by the unexpected generosity of their offer to us. There are so few deaf characters or stories in the mass media, but having the big guy from the North Pole fluent in sign language* seemed like a radical start to our festive season.

And about a week later, Amelia’s video arrived in my inbox. The proof of its worth is in the stunning, personalised Christmas pudding, provided by Santa and Mrs Claus:

Christmas morning will be full of lovingly chosen revelations for Amelia. But she has received an early gift this year, and its unique contents made her face shine with joy and unbridled excitement.

Amelia’s mouth dropped open when Mrs Claus mentioned her passion for Spider-Man (how did she know?). She followed the message closely and copied the signs she recognised about the reindeer and snacks for Santa and his helpers.

When it had finished, she pressed replay over and over, endlessly enchanted by it all. It’s simply a gorgeous video; we absolutely love it. Especially the bit where Santa tells Amelia to be a good girl and go to sleep on Christmas Eve.

If he could write that message in the night sky and hang some lights off it, that’d be awesome too.

*Although the message is in British Sign Language and Amelia uses Auslan, many of the signs were familiar to her so she followed it well.

 

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It’s a blackboard jungle out there

Nobody ever thinks that you’re going to send your child to a special school. You know, you don’t wake up and think to yourself, I really hope my child gets into a special school. That’s just not how we are is it? I think I’ve changed.
— Sara James (‘A Place for Us’, Australian Story, 12 August, 2013)

The road to school is paved with good intentions (and a lot of hope)

The road to school is paved with good intentions (and a lot of hope)

I recently watched this episode of Australian Story and the above quote from Sara James, mother of a young daughter with a disability, stopped me dead in my viewing tracks.

Because a variation on her words could so easily have been spoken by me about my own little girl, Amelia, who will begin her primary school years at a school for deaf children.

We certainly didn’t think we would end up sending her to anything other than a mainstream school. Going to any other kind of school wasn’t on the list of hopes we had for her before she was born, but like Sara James, I have changed my mind about how I feel about this too.

You see, Amelia’s deafness and autism (and their impact on her development) make it impossible for us to plan her school years more than 6-12 months ahead. Right now, we know where she’ll be next year but after that, it’s hard to be more definite.

The pre-birth notion of mapping out an arrow-straight educational course for her, from attendance at the small local kindergarten in the church hall a few streets away, to the nearby primary school we liked because of its bright, new buildings and wide open spaces is now just a fanciful set of ideas turned to dust.

Thankfully, we didn’t have enough time to really take those places to heart before we understood that for us, and for Amelia, the path of life would never be so clear-cut or sure. We have also worked out that institutional structures won’t always be central to our truest, deepest wishes for her.

What do we care about brand new buildings now, or the ‘best’ scholastic reputations or keeping up with the expectations of others? Not a goddamn thing, because when the goal posts move to the margins you have to start playing a different game – the long game.

It’s funny how far my attitude to this situation of uncertainty has evolved in a period of just two years, as we have adapted to two life-altering diagnoses before Amelia is five years old.

I will never forget the first question that popped into my head when the audiologist at the Royal Children’s Hospital opened the floor to me after we found out that Amelia was deaf: “Will she be able to go to a normal school?”

Normal. I would cringe at that word now, but back then, I seized on it without thinking twice. But in that room, ‘normal’ was just a code for the life I had imagined for Amelia while it slipped through my hands in a matter of minutes.

What I really wanted to know was, “Will she be able to live the life I expected her to have, just like everyone else? Do I dare to hope that despite her deafness (her difference) that her life will be easy enough to navigate? Please, will she be okay?”

I admit it was a desperate grab for a slice of optimism about the future. I’m sure my questions, both articulated and unsaid, are not uncommon to those parents who have found themselves in a similarly dramatic position.

My panicked mind flew years ahead to school because it was an obvious point on our family timeline where I imagined the normality of our lives would truly be tested. Before then, the outcomes for pre-school aged children are much more private and far less scrutinised.

If school age represented a big fork in the road, I didn’t want us to take a hard left while everyone else got to turn right. We’re most of us pack animals at heart, and never more so when trying to slot our children into the ‘safety’ of the herd.

The audiologist reassured me, “Yes, with lots of work on her speech and language, Amelia will catch up by the time she is six or seven. She will be able to go to a mainstream school.” At the time, there was no reason to think otherwise.

So, I clung to that small promise for the next two years. I had to believe that if we just did the tough yards of early intervention and speech therapy and everything else, we would emerge from this temporary blackout and resume normal programming.

But something happens to you over the years of taking your child to appointments and tests and scary places you never thought you’d be. You grow into it, you stop resisting and you begin to accept this life as the real one, the one you were meant to have.

It started in no small way with Amelia’s time at her three-year-old bilingual (Auslan and English) kindergarten run by the Aurora School’s early intervention service. It gave me a chance to see first-hand the benefits of a bilingual learning environment tailored for deaf kids.

Far from emphasising difference, this program offered its charges the security of shared experience. It gave them multiple ways to communicate (sign, speech, gesture), exposure to a wonderful Deaf role model and the freedom to develop at their own pace.

I watched Amelia embrace the visual communication that helped connect her to people, places and things. That kinder year laid some important foundations for her when she needed it most.

By the time she was four, it was clear that Amelia still needed a lot of support to develop her speech, language and social skills. There seemed little point throwing her into the deep end of a mainstream kindergarten three days a week just so I could walk her there and console myself about ‘normality’.

We chose the bilingual deaf kindergarten on our side of the city because it is a 20 minute drive away, and is part of a primary school for the deaf so there’s lots of expertise and support available.

Three of Amelia’s classmates from Aurora joined her there this year, so she’s been able to follow a group of friends through the early stages of school life. In this, we count ourselves very lucky indeed.

Hand up who's ready for school next year?

Hand up who’s ready for school next year?

Seeing my daughter’s growth in stature and self in this class has filled me with a happiness I did not dare wish for at the start of the year. It is so clear to me that she has found a soft, enriching place to land while being challenged to learn and play in novel and stimulating ways.

At this school, deafness is the baseline, the common denominator. It defines what is the same about her peers, not what is different. It requires no explanation; it is simply understood and catered for in every possible way.

Amelia is talking and signing so much more every day and is fast outstripping her mother’s knowledge of Auslan. She’s even started correcting me when I try to copy a new sign she brings home with her at night. Cheeky little blighter.

My girl will turn five in January next year and I did not think that she would be ready for school, any school, by this age. The recent diagnosis of autism didn’t knock us off a straight line because we’ve never known one. It merely confirmed to us that there is still much work to be done.

I thought perhaps Amelia would repeat another year of kinder, play it safe for a bit and see what the following year might bring. Being a January baby I could have reassured myself that she was entitled to an extra twelve months of development under her belt.

But her marvellous kinder teachers were having none of this overly cautious, pessimistic stuff. It is their strong belief, and I do have faith in their opinion, that Amelia is ready to make the leap to the big kids’ part of school.

It helps that our paediatrician and child psychologist support this assessment and agree that a bilingual school for deaf children is the best place to ‘super-charge’ her progress.

Although this decision made me a little nervous, I couldn’t feel more supported by all of the people who count. I soon realised how low risk our choice was while paving the way for so many benefits and rewards.

I took a tour of the primary school and current Prep class last week and discovered it has four children with the teaching shared by two people (one deaf, one hearing). Not fourteen kids or ten. FOUR.

I had heard that the numbers were small but I had no idea just how optimally low they would be. The numbers are capped at eight, but five is usually the highest number. Now that’s a teacher-pupil ratio we can all live with.

The school already has a number of children who are both deaf and autistic so there is plenty of built-in specialist support on the spot and ready to go.

The primary school children have weekly speech therapy sessions and start to learn more formally about deafness and Deaf Culture among the other programs like art and sport and music that make up the curriculum.

What this unique context means for Amelia is that despite her less-than-perfect start to life, at five she will be able to go to school with a handful of friends, one of whom she has known since she was three. They are a tightly bonded group and it’s thrilling to see them advance together.

Money can’t buy the kind of confidence and self-esteem that comes from progressing with your peers from one milestone to the next, no matter what your individual challenges might be.

In a specialised setting like this, every child gets a chance to grow and move on and up.

If the next 12 months are principally about taking stress off Amelia’s shoulders and helping her to realise her potential, then I couldn’t really think of a more suitable place for her to be.

No mainstream school with all the best intentions, good will and deaf-friendly technology can give her the same guarantees of security and personalised support, particularly at this most crucial time.

I do not see this choice of a school for the deaf as a compromise or as something below par, as I might have two years ago. We are choosing the right school at the right time for our daughter and her needs. Our family feels incredibly fortunate to be able send Amelia there.

If you’d asked me back in 2011 if Amelia would be starting school in 2014 and where she would be going, I would have answered, “I just don’t know.” But here we are, with our collective bags packed with books and excitement, ready for school next year. Prep is a happening thing.

So, I’ve opened my mind and my heart a little bit more, just a touch, to let in the dreams that Amelia’s ascension will bring. She will stand on our porch in her red and blue school uniform and have her photo taken and maybe I’ll surprise myself and be one of those mums who cries on her first day.

Or maybe not. But who even cares? Because my beautiful girl’s going to school, and baby that is a wonderful thing.

Further reading:
The brilliant Aussie Deaf Kids website has an informative overview of the types of schools available to families of deaf children. The general section on primary school is also a valuable one for parents with children entering into this stage of learning.

Choose your own experience

David signs his crucial moment in Four Weddings and a Funeral (1994)

David signs his crucial moment in Four Weddings and a Funeral (1994)

It’s not often my daughter Amelia will see her specific life experience as a deaf child reflected sensitively in the media, in books, on television or in movies. She could count the instances to date on one small hand.

Of course there is more to my girl than her deafness and I hope like me she will one day fall in love with wonderful real and imaginary hearing characters like Elizabeth Bennett, T.E. Lawrence, Sam Spade and Angel (the vampire with a soul) regardless of how far their lives diverge from her own.

It’s called having an imagination, and we think Amelia has a vivid one.

But let’s face it, there is a dearth of representation in popular culture of deaf people and their experiences, from the historical to the contemporary or the entirely fictional. If you take Helen Keller and Marlee Matlin out of the mix, it’s slim pickings indeed.

I never realised how ‘cutting-edge’ Four Weddings and a Funeral was to feature a young signing deaf man called David (played by deaf actor David Bower), who is more than incidental to the plot, until I grasped how rarely this happens in mainstream cinema.

Ever on the search for positive examples like this one to show Amelia, I was excited to come across a company called Experience Books which sells texts for deaf children and children with autism.

But they’re not just selling books, ready-made in the hope that they might mirror something about your child’s journey, they are (and the clue’s in the title) offering a rewarding experience that is both interactive and tailored to tell their unique story through words and pictures.

So, a few weeks ago Amelia and I sat down to personalise a book about her deafness and what it means in her life right now. It’s a three-step process: you build the main character (hint: she’s a rambunctious, blonde four-year-old), choose the text and create the book. Too easy.

First we selected the book’s theme, which for us was deafness (rather than autism or say, a book for siblings). Then Amelia was able to choose how she wanted her ‘avatar’ to appear, so that in the finished product she would recognise herself in the blonde hair, pale skin, dark eyes and most importantly, silver hearing aids of the main character ‘Amelia’.

Then, the website provided us with an opportunity to drill down into greater detail about the kind of hearing loss Amelia has and the type of equipment she uses to access the world of sound.

A free-text section prompted us to talk about what she wanted to say about herself – who her family is, who her friends are and the activities she loves. The nature of Amelia’s ‘self’ is somewhat enigmatic so I welcomed the chance to test how far she could talk about small things that make up her identity.

Amelia was so excited by my questions and our enterprise that she kept throwing names at me for inclusion, like all of her cousins and almost all of the kids from her deaf kindergarten class (which, in most cases, I had no idea how to spell). It was intoxicating.

We ran out of text space, but we filled in more than a few gaps about what is important to her, about what ticks the workings of her innermost clock.

Another key section of the book is on communication, and it’s great for parents who want to share some crucial aspects about what makes things difficult for their deaf child (loud noise, people talking at the same time), or how people can help (use sign language, get their attention first before speaking).

And finally, the website asked us to enter more detail about Amelia’s favourite things. So, it’s not simply about her deafness and describing what that’s like for her, it’s also about Amelia the girl who likes painting and dancing and signing with her friends.

After we finished entering all of Amelia’s characteristics and clicked ‘send’, it occurred to me that I didn’t really care what the book ending up looking like.

The experience of sitting with my daughter, jostling for space in front of the laptop as we chatted loudly about the big ticket items in her life (“we can’t fit any more names, Amelia!”), is one of my favourite moments as a parent.

Because I’m still working out the best way to be with her or how to reach her, and the opportunity to sit and talk and learn together in a relaxed way does not present itself that often.

Happily, for the purposes of this story, Amelia’s enjoyment and my bank account, the book is a winner. It’s not long and there is a typo where I managed to misspell Grandpa (Granpa is still phonetically correct, right?) but it does everything I hoped it would and more.

Amelia with the book created just for her

Amelia with the book created just for her

It offers that rare thing, a child character with a hearing loss who also wears hearing aids and does kooky, fun things like most four year olds. She lives hard and she plays hard. And has four million friends.

But it’s not just any child’s story, or an approximation of Amelia’s, it is precisely HERS, with the right language to define her hearing loss, the colour of her aids worn in both ears and some of the things that I want people to understand about her deafness before she can grasp them herself.

I don’t expect this degree of looking-glass reflection every time Amelia opens a book or switches on the television. If you constantly search for yourself in the stories chosen by a media beyond your control you will inevitably be disappointed.

Deafness and the lives of deaf people are a marginal interest in that mainstream world, so you have to grab every representation you can find and shine a big light on it.

Like this book called ‘All About Amelia’ which for other families is just a mouse-click away from telling the story of their deaf child in bold colours and important words to cherish for a lifetime.

Parent or advocate?

You are the best advocate for your child.

You are the expert on your child.

If I'm going to box, I want to be directed by Scorsese

If I’m going to box, I want to be directed by Scorsese

If I’ve heard these weighted expressions once, I’ve heard them a thousand times over the last two years. Sometimes they are like straitjackets, pinning my arms to my sides, suffocating me. No matter how hard I struggle against the bonds, they will not break.

When I am not so angry and more accepting of my job as an externally appointed parent-advocate-expert (a triple threat, if you will), I find I can walk the line and just cop to the fact that I have to keep my eyes peeled and my sleeves rolled up. You know, all of the time.

Because there’s no choice, between one role and the other, not at my end of the parenting game. I can’t just say “yeah, you know, today I don’t feel like being an advocate for you Amelia, I kind of just want to run away to the movies and hide”.

My responsibilities would find me there anyway, up to my shiny eyeballs in popcorn and lust for Mads Mikkelsen.

Generous people tell me I’m doing an amazing job at it, because I’m tough, because I have fought so hard for my daughter and, I guess, because I’m still standing. This is reassuring to hear because I don’t really know what the hell I’m doing most of the time.

But in all honesty, I didn’t want to have to be a pugilistic parent/advocate. Not at all. It doesn’t really come naturally to me, this so-called toughness. I just wanted to be a simple parent, an ordinary mother.

When I was going through IVF treatment, I didn’t dream of much more than the birth of a healthy child. My hopeful mind dared to stray to thoughts of long, slow walks with the child of my future – I would hold her little hand and whisper secrets about the world into her ear.

Now I want to laugh in the face of that woman, who thought that the realisation of that dream was the one battle she had left to fight. That poor woman who was so deluded she put her boxing gloves away and let her guard down. I do not recognise her in myself anymore.

But resistance is futile when you become the mother of a child who needs so much more than nappies and lunches and lullabies. If you don’t take on the mantle of advocate and close the gap between your child’s challenges and other people’s understanding of them, then they will fall into a crevasse the size of Western Australia.

So get over yourself and get on with it. That’s my personal mantra. It’s not very poetic as mantras go, but it’ll do for what I have to get done.

If you are wondering how advocacy works in my situation, as the mother of a deaf child with additional needs, well here’s a list of some of the essential gap-closing things I tell people who interact with Amelia:

  1. Amelia has a moderate-severe/profound hearing loss which means that without aids she can only hear fragments of words or really loud noises like a vacuum cleaner, a motorbike or a stereo cranked up to 11. Here’s a handout from Australian Hearing which perfectly illustrates this information (I gave this document to lots of people in the early days and still carry a worn copy in my bag),
  2. With hearing aids, in a quiet room, when you are close by, facing her and have her full attention, Amelia can understand you very well,
  3. If you want to get Amelia’s attention, you can touch her on the shoulder, tap the table in front of her or stamp your foot nearby (I also have fact sheets about how to communicate non-verbally with a deaf child which I have distributed when necessary),
  4. Please make sure Amelia can see your face when you are trying to talk to her because she relies on the cues she reads in your expression and lips to follow what you are saying; kneel down at her eye level and make sure you don’t cover your mouth,
  5. If Amelia is not wearing her aids and you are talking to her back or from across the room, SHE CANNOT HEAR YOU,
  6. Well-lit rooms are the best for maximising how much of your facial expression and lip movement Amelia can see when you are speaking to her,
  7. Background noise, like booming televisions or loud music will radically reduce how much Amelia can hear (her hearing aids are powerful but with competing sounds, they will not be able to pick out and make sense of softer conversational tones from the wall of noise). That kind of noisy room is an acoustic mess for Amelia, so please turn the sound down or off,
  8. Amelia is a visual thinker and learner, so even if you don’t know any sign language, lots of gestures to communicate with her are welcome,
  9. Amelia’s hearing loss was diagnosed very late, so her speech and language is delayed. But she can understand a lot of what you are saying, so please don’t stop talking to Amelia just because she can’t necessarily answer your questions or speak like other children her age,
  10. Amelia is highly fearful of certain situations, such as doctor’s examinations or tests, so please be understanding if her behaviour seems manic and a bit naughty – it is only because she is afraid and stressed.
Amelia and her Nan, up close and personal

Amelia and her Nan, up close and personal

I figure if you know these things about what it’s like to be Amelia and cope with a significant hearing loss in environments that are often set up to think of her needs last, then maybe she’ll have a fighting chance to access the world on a more level playing field.

But you have to meet her where she is, not the other way around.

You can never assume that people will know anything about deafness, its complexity and how it affects an individual child, either through experience or instinct. Even if you meet someone who knows a little bit about some of the issues involved, they won’t have any idea what they mean in Amelia’s case.

That’s precisely why it’s my job to pave the way and educate. I’ve had to learn so much myself, about audiograms, hearing loss, hearing aids, sign language, and cochlear implants, not to mention how my daughter’s life is impacted by her challenges and what strategies might serve to help her.

In certain situations or with particular people I find I have to repeat myself many times. I’m sure that can be annoying, but I can’t afford to care.

Other times I grow weary and give up after restating the same message in different ways (gently, incidentally, directly) when it just isn’t being heard and taken on board.

In those moments I feel like I am failing Amelia by not pushing past my own emotions and hammering home these messages more forcefully.

I’m no expert on Amelia – she defies being pinned down or defined – but I know that when we go to have her hearing tested every eight weeks, she will only tolerate soft headphones (not the tube phones inserted into her moulds or the bone conduction ones with their hard edges) and we have to warm up with the marble game first (try it, it’s tremendous fun).

Amelia and me - we're in this together

Amelia and me – we’re in this together

If someone forgets these little details, I’m there to remind them and I always ask to wear my own pair of headphones because I know this makes Amelia feel like we’re in it together. And we are.

We used to have inexperienced graduates assisting our main audiologist with the testing. By the time they had worked out the equipment and how to set up the games, Amelia was half-way out the door.

After a few conversations with the clinic, we now have two senior audiologists with us every time a test is conducted. It’s harder to find a time-slot, but getting regular and accurate hearing test results is too important to settle for anything less than the best.

At the moment, Amelia attends both a mainstream kindergarten (one day per week) and a deaf kindergarten (two days). At the latter, I can for the most part take my advocate’s hat off, because her teachers understand deafness (or are deaf) and so I don’t have to explain anything about the big ticket items on our list.

I know some things get missed at her other kinder, based at a local childcare centre, like hearing aids not turned back on after a nap, music played too loud or conversations held around Amelia rather than with her. But by and large the people there have been amazingly inclusive of my girl and her needs.

More than one child care worker over the last two years has paid their own way through Auslan courses and worked with our Early Intervention service so that Amelia can make the most out of her time with them. The staff took the education process to another level on their own initiative and I truly love them for that.

It is also a nice surprise when I come into contact with a person or organisation, equipped with my advocate’s bag of explanations, and find that they are already primed to meet Amelia where she is.

Exhibit A: I called a local youth theatre the other day to talk about a Drama Play program for three-five year olds. Our paediatrician had told me that they often work with deaf kids so I should see what they might have for my ‘artsy’ Amelia.

I was quickly transferred to their Access Officer (already a promising start) and told her about Amelia and that we wanted to try the program in term three. She was so positive and excited about welcoming Amelia into the program, which she said would be perfect for her.

She said, “Does she use an FM?”

“Um, yes, she does sometimes”.

“Great, bring it with you, we use them all the time. I’ll set up a meeting with our artistic director running the program so you can come and in and tell us all about your little girl. If we need to organise for an interpreter or any extra support we can do that at any time”.

Me, “………………………..

I didn’t need to say anything else because she had closed the gap of understanding before I needed to leap in and unfurl my list of ‘stuff’ about Amelia.

This type of interaction is rare but when it happens you have to sit back and appreciate how liberating it is when someone just ‘gets it’ and you don’t have to endlessly explain. I’m told it’s not my default setting, but I really do like shutting up when others cover the bases ahead of me.

So for a few blissful minutes on the phone, I was just a mother who was neither an advocate nor an expert, and in my experience those moments are worth their weight in gold.