Time to fly

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Just in case you were wondering what I’ve been doing since my last post in August, 2016, here is a little preview of my soon-to-be-published book, Amelia & Me. You heard. The job is nearly done and I’m ready to take it to the bank. Or the library. Seriously, I will bring it to your house.

I’m so proud of the final cover design which I think hits all of the right notes for our very personal story. It was really important that the main photo of me and Amelia should convey our closeness, our directness. We look at the camera the way we look at the world – front on and without flinching.

It’s been a wonderful process over the last ten months pulling over three years of writing together into a manuscript and working with awesomely clever self-publishing, editing and creative people to realise my dream. It takes a village, or at least a super cooperative hamlet.

So, watch this space like a hawk. The proof is in the, well, the proofs. I’m about to finish my final edit before I hand my baby over for printing. It’s scary and exhilarating and I can’t wait.

It’s time to fly, my friends. Don’t look down.

 

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In dreams, you’re mine

baby-photographyWE WERE at dinner with friends when I saw the bonny baby at the next table. A new-born covered in a light muslin wrap, protected from the too-cool air inside.

His mother was cuddling him in the warmth of her arms. She rocked him back and forth, swaying rhythmically in her seat.

Her beloved one had just woken without protest, but she was soothing him with the closeness of her body, the soft murmuring on her lips.

I was mesmerised. Trapped in a zone with them I could never truly share.

There were no tears from him, no raucous babble; he simply stared up at her with fixated wonder. His mother.

The yearning inside me was powerful, like I’d been sucker punched without warning. It hurt in a distant part of myself I’ve tried to bury. But it’s always there; it grows stronger with age.

It rears its ugly head sometimes when I pass a pram in the street and glimpse the soft skin of infant feet, bouncing with the movement created by the street. My stomach lurches; I look away.

Or like the day when I was walking behind a man carrying a sleeping child in his arms and I put my hand out as if to touch a silken baby cheek. They moved out of reach and I let my possessed hand fall back by my side.

Every so often I cross the road to save myself the heartache. I don’t always have a choice.

This night, I stopped the conversation at our table mid-stream: “Oh god, look at that beautiful baby. Just there. He’s so sweet! Look how tenderly she’s holding him.”

My companions politely indulged me for a moment. I wanted to go over and hold that baby to my chest with a ferocity of feeling that shocked me.

It took all of my strength to resist the urge, but I wrangled it, pushed that dreadful longing down into the dark where it belongs. There’s no cure for it anyway.

So, I don’t tell anyone that it’s there. It’s a private pain that ebbs and flows.

Instead when I’m asked by strangers for the millionth time why we “only” have one child, I say: “No, I can’t have any more children, but really we were happy to have ‘just’ one.”

Or: “IVF was so very hard that we didn’t have the strength to go through it all again.”

And: “Our daughter has challenges and needs so much extra help and support. It was meant to be this way.”

We are lucky. We live with grief. But we have no regrets.

It’s a small world after all

When I had a baby, one of the things I expected was that my world would contract while our little girl, Amelia, worked out how to live outside of the tightly confined space of my body after nine long months.

Nothing can really prepare you for the intensity of that newly contracted space as the changed dynamic of a family of two adults adjusts to life as three, including one small person who is completely defenceless and totally needy.

But the thing that got me through the life-changing chaos of those early days was the promise of growth, of progress – of the eventual expansion of that changed world we now occupied. Its limits would open out to include old experiences temporarily shelved or new ones we had yet to discover.

Expansion could mean anything, like us being ready to go outside and take a walk with our baby in the pram. Or feeling able to sit down at a café and order a coffee while (fingers crossed) she slept. Just 10 minutes, not long, to feel like moments of the old life could be incorporated into the new.

During the first year, progress included things like visiting people or taking short trips together. Our first holiday was a driving expedition across the state for two fabulous weeks. Amelia was seven months old and apart from the logistical challenges and the cold weather, we created some of our best family memories on the road.

The world of our family grew at about the pace you would expect – just fast enough to adapt to the challenges of each main stage. We imagined that this expansion would just go on and on. And hopefully, it would bring more SLEEP (it didn’t).

Our ambitions for growth extended to things like going to the zoo, the circus, the movies, or that brilliant outdoor production of The Wind in the Willows performed in Melbourne’s Royal Botanic Gardens every summer. Amelia would join other children and follow Toad, Rat and Mole down the River Thames.

Silly things, I guess, but they’re the stuff that parental dreams are made of, at least for us. You picture sharing magical new events with your child and it’s only a matter of time before you get there.

But it’s not. Not for us, anyway. Before Amelia turned three, I thought for sure we were on track to growth and progress but since then (and with the escalation of her autistic behaviours) our world has been steadily contracting again, even where seemingly trivial things are concerned.

It’s not exactly like the first few months of Amelia’s life, that almost suffocating isolation of early parenthood, but some days it’s not far off.

Even ‘easy’ activities like going for walks to the park, or actually being at the park have become fraught with danger and the promise of failure.

Last weekend the sun greeted us upon waking so we thought, ‘why not try for a walk outside and see how we go?’ We jumped into the car and headed to a lake area with a lovely walking track and playgrounds at either end.

But we didn’t get too far. About 100 metres actually, in about 40 minutes of movement in large, frantic semi-circles punctuated with frequent tantrums while fellow families streamed serenely past on bikes, scooters or just on foot, ever moving forward while we stayed in one place.

The ease of their walking and forward progress, this evidence of how different their lives are to ours, made me feel desperately alone.

If I do manage to get Amelia to a playground (usually by car for sanity’s sake), she will invariably become anxious or angry about some indefinable thing and so we have to leave. It’s like she’s suddenly forgotten how to just be at a park, how to play on the swings and slides and enjoy herself.

The zoo (like any busy, public place) is a nightmare venue to take Amelia and I have tried it several times. She doesn’t really understand how she’s meant to behave or what she’s supposed to be looking at. Such a shame for a girl who loves animals so much.

The sights and sounds seem to overwhelm her auditory and visual senses so we cover little ground before another meltdown kicks in and our departure becomes long overdue.

I used to visit my Mum frequently to break up the stress of the days spent at home, and Amelia always enjoyed this time with her beloved Nan. Now she becomes highly fearful and angry at the mere suggestion of going there so I’ve had to cross that safe house off our list for the time being.

If I manage to convince her to go there, Amelia will begin insisting that we leave as soon as we have arrived and repeat this request incessantly into my face or by urgently curling my hand into the Auslan sign for home until I acquiesce. You can see it’s hardly worth the stress.

So, for the most part, the world has contracted once again to the boundaries, nay the limits, of our family home. The walls have closed in and sometimes it’s hard to breathe. Sure, we can enjoy the garden together, the lovely outdoor spaces when the weather allows, but some days that doesn’t feel like enough.

It’s school holidays right now and those weeks are by far the worst. Not for reasons you might expect – I love to have Amelia with me and to slow our routine down to a lazy jog rather than the frenetic sprint it usually feels like to get to kinder and the like. We make our own fun with paint, play dough, cooking and silly games.

No, what makes me feel so bereft at these times of the year is the painful exposure of just how small our world is, how limited the opportunities are for being out and about together.

Lots of other families get to plan things like long trips or day excursions or even just walks to the park. They say they’re going to do it and they just go and do it. Idea becomes reality; the run-of-the-mill activity or the special childhood dream event happens and the photos are added to the scrapbook.

The novelty of this is like a curio I’m peering at through a glass cabinet – I can see it but I can never reach out and touch it for myself. I’m told that things will get better and our world will expand once again but I can’t afford to create more fantasies that are beyond the capabilities of my daughter to fulfil.

It’s not fair on her and it just breaks my heart.

[For TR, who’s in the trench with me and I wouldn’t have it any other way.]

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.

Not drowning, waving

Amelia will go her own way

Amelia will go her own way

Last night I dreamt that Amelia was running ahead of me near a water’s edge I did not recognise. I was sprinting to stop her but she was too quick for me.

She was laughing, her head thrown back in a pose of delight, as she looked back in my direction. Amelia was having the time of her life; the dream version of me did not agree.

I saw it all in hazy point of view shots. My hand as it reached out and missed her as she leapt into the air, pink backpack and all, and jumped into the water feet first.

The surface of the water as I dove right in after her, face forward, frantically searching the murky depths below for a sign of her.

The topmost handle of Amelia’s backpack – the one with the mermaids on – the weight of which had pulled her down fast, so fast she was almost gone.

And there was my hand again, elongated in supernatural elasticity, stretching out to grab that handle and then, ‘Got it!’, I had it in my grasp and I pulled my little girl up with all the strength I could muster.

I pushed her onto the bank and my husband was there to hold her, to roll her over while she coughed unwanted liquid from her lungs. I ripped the backpack off her shoulders; it was over and I woke up with a start.

Sleep was hard to find again after that – the fear and anxiety of my dream was all too familiar.

Amelia is so determined to go her own way in the world that I often feel no more than a powerless onlooker.

As a parent, so much seems (and is) beyond my control. Her deafness, her now-confirmed diagnosis of Autism Spectrum Disorder.

But I was forgetting about the hope that the real world Amelia brings to my daylight hours. In the morning she came to my bedside and reached out for my hand and I pulled her up into the safety of our bed.

I put my head on her shoulder and felt consoled by the sight of her, the feel of her warm body next to me, the smell of her hair.

Amelia saved me this time, from the dark thoughts that visit me at night, that haunt me even when I am asleep. And she reminded me that nothing, no pain or problem, is ever as bad as our nightmares make them out to be.