Careful she might (not) hear you

I’M NOT sure precisely when I started worrying about the social impact of my daughter Amelia’s deafness. Maybe it was the day I read too much online about how isolating, confusing and downright exhausting social experiences can be for deaf kids, always up against it in the hearing world.

Daunting words in bold-face leapt out at me from the computer screen. Sharp-edged ones like, depression. Anxiety. Paranoia. And anger. That one always seemed to be in italics for maximum impact.

It’s not a doom-sayer’s checklist – ‘nasty things coming your way when you’re raising a deaf child’ – but it is a set of emotional risk factors that can’t be taken lightly.

My aim as a parent is to hopefully reduce their power to hurt my daughter on her path between two contrasting worlds, deaf and hearing.

Amelia is not quite six years old and we have only known about her deafness for a tick under four years. It’s not a long time in the grand scheme of things. But already I see just how easy it is for her as a deaf child to be left out or excluded by virtue of her difference to other people.

Let’s take birthday parties as a classic example. Oh birthday parties, how I hate thee with a passion. It’s unavoidable, but kid’s parties are the worst kind of place for a deaf child to feel a part of the natural order of things.

Because they’re too loud, too chaotic, too MAD for Amelia to make sense of what is going on around her. Sure, she wears hearing aids but they are next to useless in the face of such an intense racket. Those little devices can’t sift the wheat sounds from the cacophonous chaff and so she is mostly lost.

I watch her making her way with excited bewilderment around these parties and I feel like throwing a huge, warm blanket over her. Underneath its soft layers, background noise would be reduced to a gentle hum that would not compete with voices speaking clearly in merry conversation.

In either context Amelia is alone. ‘Alone’ in the noisy crowd, or by herself beneath the blanket I throw over her every day when we come home and I can set things up exactly as she needs them to be.

It is because of this potential for loneliness that I love being able to send her to a school for deaf children. When I visit Amelia there and see her with her classroom comrades, it’s sometimes hard to see where she starts and they finish.

The joy of school etched on her face.

The joy of school etched on her face.

These six classmates have been together for almost two years now and they are incredibly close. Whether they speak or sign to each other there is something almost organic about how they interact.

It’s born of the time they’ve spent bonding as friends but it is also the result of their shared identities as bilingual deaf kids. Communication between these children operates on a plane of mutual instinct and understanding; touching or tapping to gain attention, waving to be seen or heard, using gesture to add meaning: all form the basis of a code that marks them out as members of a club, a culture.

Within this rarefied environment, Amelia and the knowledge required to be with her and make her feel like an insider are known to everyone. I never need to worry about a scary thing like social isolation.

Seeing how crucial communication is to Amelia and her sense of belonging, it is all the more important for us, her hearing family, to be diligent about always involving her in social activities and conversations.

When we have friends over to visit, she becomes highly agitated and manic when there is a lot of conversation happening across her, between adults engaged with each other rather than with her.

Amelia yells at us over and over again to explain, “What are you talking about? What are you talking about?!” She throws her body into the mix too, placing herself in our eye line so we don’t ever forget she’s there waiting to be included.

Of course she needs to learn when to wait her turn (good luck) and it is less than socially optimal for us to have to keep stopping and explaining each story to her, but it is her right to be factored into the cut-and-thrust of social chatter.

It is much harder for Amelia to find her way in larger social situations where competing sounds blend into a baffling wall of confusing sounds and she sort of disappears under the radar, unable to get her bearings without a hearing compass to guide her.

This is where our greatest challenge lies, in reminding other people to take a minute to stop and talk to her, lean down close to her face so she can see their lips when they are speaking, use their hands to make the meaning of their words clearer. To see her and invite her in.

In reality, it doesn’t take much to make a child like Amelia feel involved AND accepted. I see this every time we spend time with our closest friends, GH and NB and their boys. It’s so uncomplicated, the way they ask Amelia how to sign certain words, to share her second language with them.

I watch Amelia’s eyes light up with pleasure as she shows them how to sign ‘turtle’ or ‘hippo’ in Auslan. They sign the words back to her and, hey presto, she’s in their world and they are in hers.

We recently went on holiday together and stayed in the same cottage. At night time as we were getting our kids ready for bed, there was always some story-time happening in the lounge room.

Sign of the times: Amelia and Jem take their friendship to the next level.

Sign of the times: Amelia and Jeremy take their friendship to the next level.

Unprompted on the first night, Amelia grabbed a book and sat next to our friends’ youngest boy. She opened the first page and started telling him the story completely in Auslan, with her voice ‘switched off’. I’ve never seen her do that with anyone outside of her family or deaf friends before.

And he loved it, watching her hands describe the flow of river water or the fire expelled by a scary dragon. Amelia repeated this routine each night, and I could tell she felt proud to be like a big sister to her sweet little friend, able to teach him something new. It is lonely to be an only child too.

Sometimes I think it’s children who know best how to cut through all of this stuff and find some valuable common ground.

Like the other day when Amelia was with her Dad in the park and she ran over to ‘talk’ to some older boys, aged maybe nine or ten.

Her speech wasn’t really up to an in-depth gossip session but she had a mighty crack anyway. In these situations she tends to make a lot of noise, such as loud bird-screeching sounds and flaps her arms around, in her often-strange attempt to say ‘hi’ and make friends.

One boy saw Amelia’s hearing aids and asked her Dad if she was deaf, which he confirmed. “Oh, we thought she was disabled or something but then we saw her hearing aids”.

The boys then welcomed Amelia into their group and hung out with her. They had zero anxiety about approaching her in the ‘wrong’ way. They got the hard questions out of the way early and then all there was left to do was play.

And it wasn’t that they were tolerating her presence, the boys actively shared their games and conversations with Amelia. They let her hold their hands and there was mutual enjoyment of the time spent together in a small park in the suburbs.

I know that this was a special event because of the way my husband told it to me. He spoke about that main boy reverentially, because for about fifteen minutes he took our daughter into his world and any present worries about her just melted away.

Her isolation, and my husband’s, were delayed for an afternoon, halted by the friendliness of those boys and their easy acceptance of Amelia.

And so was mine. Social isolation isn’t just a huge risk factor for deaf children, rather it applies to their parents too. Because for every child or adult who ‘gets it’ there are so many others who don’t and that is an alienating fact indeed.

Thankfully at the moment, Amelia isn’t really cognisant of the people who accidentally ignore her, nor does she seem to feel the exclusionary effects of situations in which she is a natural outsider. The big job for us as she grows is to try and minimise the impact of this kind of isolation on her generous little heart.

All we can hope for is that there are enough loving family members, cool boys in the park and sweet little friends who enjoy their story time in Auslan to protect her from the feelings of loneliness when they come. And try though we might to stop them, they will come.

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Ogres are like onions

Shrek in existenstial crisis mode.

Don’t mention parfait.

IN ONE of my favourite scenes in Shrek, the titular Ogre and his Donkey friend are walking and talking about the vagaries of life. Well, at least Shrek is trying to.

He explains to Donkey, “For your information, there’s a lot more to Ogres than people think…Ogres are like onions”. Not because, as his little hooved compatriot points out, they stink, or make you cry. It’s because they have LAYERS.

Shrek is trying to say that he is more than the sum of his parts, more than the brute strength suggested by his enormous, green frame. He is a complex being, with, well, layers.

Donkey’s jive-talking wisecrack, “You know not everybody like onions,” is followed by a hilarious riff on the deliciousness of parfait more suited to Mary Berry’s love of perfect cake “lairs” than an existential crisis.

I can totally relate to Shrek’s onion-based reflections. When we found out that our daughter Amelia, who was born deaf, was also on the autistic spectrum with some serious developmental delays to boot, my mind reached out for a suitable analogy and came upon the humble onion.

I can remember saying in my flippant-but-painfully-serious manner to our pediatrician, “How many layers does this onion have?” We laughed but neither one of us was taking the news in our stride.

By drawing my own onion parallel with our life, I don’t mean that I view my beautiful daughter’s struggles as something to be bitter about, though I have cried more tears for her than the most gruelling meal-time chopping session could produce.

I’m trying to find a way to explain how it feels to start out as a family where everything feels certain, solid and whole, for at least a year, and then suddenly important layers start flaking off, one after another, revealing big problems in the rawness underneath.

When I think about the many phases of our life-onion in the nearly six years since Amelia was born, it’s hard to believe the number of challenges we’ve been confronted with.

On one level, it can make you feel dreadfully pessimistic and wary of the next bad thing waiting just around the corner. Once the layers start to crumble, it’s difficult not to see trouble in every cloud, every rainstorm, or every Bureau of Meteorology forecast annoyingly recited to me by my weather-nerd husband.

What could be more important than this?

What could be more important than this?

But the funny thing about going through massive life upheavals, one after another in a short period of time, is that you exhaust a lot of the energy that would normally be expended worrying about pointless things.

By the time you’re standing at the centre of that unstable onion, you have little need to be worrying about the next career move, big promotion, or shiny new car. Your perspective undergoes a radical shift and it will never be the same again. For that, I am extremely thankful.

In a weird twist of fate many years ago now, I was made redundant from what I thought at the time was an important job, the best job I’d ever had. In the blink of an eye it was all gone, the company car, the generous salary, the status symbols of a career I had built over ten years.

I was suddenly jobless, but within three months, we found out that Amelia was deaf and nothing mattered more than being with her and helping her recover lost ground. My life had been stripped back to the bare essentials and I found that I didn’t care about anything more than my daughter’s happiness. No job can compete with that.

I didn’t mourn the sudden loss of my career for too long and I’ve had a few false job starts since then; it hasn’t been possible for me to work for longer than a year or so in the middle of all of the real graft of raising an intense little person with very special needs.

I’m hoping the tide will turn in my favour sometime soon, but I have reserves of patience on that score. Life might not be strictly about me right now, but it will be again one day soon.

Over recent years – and forgive the introduction of a new analogy – life has felt akin to being in quicksand. The harder you try to grab onto the optimism of the proffered branch, the further you sink. And yet you do grow used to the uncertainty of it all. The not-knowing-what’s-around-the-corner nature of being in our family.

No caption required.

No caption required.

Maybe we’ve shed all of the onion layers we’re going to and have collected each flaking, brown piece to create a complete picture of our story. I’m not so sure. In fact, I’ll never be sure of that, not as long as I’m alive. None of us is in possession of an infallible crystal ball.

In any case, it’s a genetic trait in my family to expect bad things to happen to us. We’re almost annoyed when things go well because we have to accept that happy outcomes are possible. Good times are not to be trusted. There’s a sick kind of glee that makes us jump up and down and say “See, I told you!!” when life delivers us a body blow.

I don’t know if that’s a Scotch-Irish thing, a German thing, or just a really weird thing we’ve developed all by ourselves. But let me tell you, I think this sort of entrenched, biological masochism has set me up for the long haul. I’m not deriving pleasure from it, but it comforts me all the same.

Ogres are like onions and so is my life sometimes. Amelia’s catalogue of disabilities too. The general uncertainly of being on the planet and not knowing what the next day will bring. Let the layers fall where they may because I have a thick skin of my own and I’m ready for anything.