To infinity and beyond

Stage rocket, sending data back to earth

What’s that famous tagline from Ridley Scott’s movie, Alien? ‘In space no-one can hear you scream’.

It somehow came to mind last week in the lead up to the music concert, ‘A Trip to Space’, staged by my daughter Amelia’s school for the deaf.

I hadn’t been paying proper attention to the school newsletter updates about the concert.

I sort of knew it was happening and my husband and I had sold wads of raffle tickets to raise money for the music program, but I had assumed it was only for the older kids at the school.

Phew, I thought. No need to get all stressed out about a new social event with its terror-inducing unknowns for a family that really hates, well, unknowns.

Then it dawned on me a few days from the big rocket launch. Amelia, along with all the other kids from the school’s Early Learning Centre, was expected to attend. And participate. And perform. And we, her fellow rookie astronauts, were to accompany her and watch either a spectacular lunar lift-off or a fiery re-entry to earth.

Regardless, it was to be our maiden voyage into the unchartered world of child pageantry and by Monday I was reaching for my inner sick-bag. I’ve seen Gravity, so I know that space is not for the faint-hearted. There’s a lot of debris out there. And occasionally Sandra Bullock. Who knew if we would make it out alive?

Little notes and pictures started arriving home in Amelia’s kinder bag with instructions about her costume for the night – black clothes from head to toe. Although I was still undecided about whether I would even let her go, I dutifully went out and found the garments she would need. The Right Stuff, as it were.

Then her space training went into over-drive. There was a mid-week rehearsal at the concert venue, a local school hall, and Amelia came home to me pumped to the eyeballs with the mysteries of the world beyond the earth’s atmosphere.

She began humming odd tunes around the house that I’d never heard before. New signs to describe the upcoming event suddenly appeared in her Auslan vocabulary. Her imagination was captured by the importance of her special voyage ahead.

Who was I to stand in her way? When I discovered that all but two of her fellow classmates would be on stage with her, I had to take the plunge. Into that black hole where new experiences lurk with the promise of success and the portent of failure.

I talked it over on the morning of the concert with our family psychologist, JM, who supports us with Amelia’s autism. I confessed my nervousness about the night and she simply asked me: What’s the worst that could happen?

I guess I had visions of my girl struggling to cope and turning on a mighty meltdown within the first two minutes and we – her Dad and I – would tread those familiar boards of embarrassment as we beat a hasty retreat to our car with a screaming banshee in our arms.

People would look at us and judge us to be bad parents of an uncontrollable child. JM reassured me that these negative thoughts were far from the reality of what those families – all with special needs children – would think.

The most important thing was to offer Amelia the chance to be a part of something nurturing and above all, fun.

I am ashamed of my pessimism, of how far I underestimated my daughter, but it is a cold, hard fact of my time as a parent that many family missions are aborted shortly after take-off and there’s no amount of planning you can implement to avoid metaphorical meteor showers.

Pessimism is terribly corrosive because it holds me back from being open to the possibility of change and growth but it is also my friend, ready and on guard to protect me from the risk of heart-break.

But negative feelings are there to be conquered and, like all good colonialists, my husband and I took a collective breath and made the journey anyway. Win or lose, we had to try and we had to hope which is far better than hiding from your own life. Or, far more deplorably, denying your only child a wondrous space adventure.

And it is no exaggeration to say that the concert was close to the best night of our lives. From the moment we stepped out of the car and Amelia ran to join her friends and run with them on the school oval, the planets that had scattered within our orbit suddenly aligned.

The kinder group was scooped up and marshalled expertly by one of their incredible teachers, RS, and before we knew it, our girl was led away from us to get ready and we were free to sit. Just sit. And watch the wonderful performance unfold before us.

We did not need to mitigate or negotiate. I kept waiting for the BAD THING to happen but it never did.

The school had Amelia in its care and, as it has so often this year, it enveloped her in its safe embrace and she was happy to be separate from us. To belong to another group of trusted adults and children. To belong to herself.

Of the 18 numbers performed in Auslan, voice, instrument and dance on the night, Amelia appeared in four magical moments. As debuts go, I put it in the class of say, Barbra Streisand’s captivating introduction to film goers in Funny Girl. Although there’s an outside chance I could be displaying some parental bias.

In any case, my little one took it up to Babs in the show-off stakes and no mistake.

She was a shocking lair up on stage. Whether she was hamming it up with her space walk, her scene-stealing turn on the bongos, or vividly signing the ‘I’ve Got a Grumpy Face’ song, Amelia was lit from within by one sight – her audience. And we couldn’t tear our eyes from her.

After the opening act set to Strauss’s Also sprach Zarathustra (what else?), she bowed deeply, repeated it with her patented Pimpernel hand flourish, then strutted along the stage line and did a few jazzy hand wiggles at her face before standing at the top of the stairs and offering a sombre salute. A salute.

The spotlight was hers to own and she was loving every second of it.

My husband and I have never laughed so hard or been so proud of a single person or event in our lives. Our hearts were fit to burst from the sight of Amelia’s confidence, her presence in the moment. For a deaf girl with autism that is no mean feat, in space or otherwise.

I’d always watched sappy American sitcom renditions of school concerts with a mixture of cynicism and scorn. But that was before our own journey into that world, where our daughter showed us that she is already light years ahead of where we sometimes imagine she is, emotionally and socially.

Amelia spent an hour and half going on stage and off and staying patiently with her merry band of space cadets. There was no crying or screaming or running away. She knew where we were and felt secure enough not to keep seeking us out.

And when she returned to us she looked different to my eyes and it wasn’t just the addition of the silver jetpack to her shoulders or the bright star now stuck to her chest.

Because when I looked at her this time I saw only possibilities. The dark matter that often weighs heavily on my mind turned to moon dust for an evening and was replaced by a feeling so radiant it would have outshone the sun.

And that was all before Amelia won the raffle prize – a chocolate hamper fit for an overacting astronaut on her first flight into the beyond. (To be strictly accurate, my husband’s name was on the ticket, but who could deny Amelia another victory on such a glorious occasion?)

At night’s end, we walked to the car with the other families calmly exiting the building. Just plain old walking with laughter and excitement as our soundtrack. Our feet were on the ground but for the next few hours my heart remained in space, and my eyes stayed firmly on the stars.

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Accentuate the visual

“I need to see something to learn it, because spoken words are like steam to me; they evaporate in an instant, before I have a chance to make sense of them.

Without [visuals], I live the constant frustration of knowing that I’m missing big blocks of information and expectations, and am helpless to do anything about it”. (Ellen Notbohm, Ten Things Every Child with Autism Wishes You Knew)

A watched clock never boils, or something...

A watched clock never boils, or something…

It sounds pretty simple, doesn’t it? When I first read these words about the visual orientation of children with Autism Spectrum Disorders (ASD), it made perfect sense. But until it was pointed out so clearly, so definitively in print, I was exhaling a lot of steam in my daughter Amelia’s direction.

Useless, evaporating steam, disappearing over her head along with my parental confidence.

It’s a revelation to discover that you have been using the ‘wrong’ language to reach your child – that mere words weighted with serious intent were never going to do. It doesn’t matter how much you want to be heard, if your choice of communication is off-target you might as well shout into the wind.

Of course, an inadequate method of communication is nothing new to our household. When we found out that Amelia was deaf, it was painfully clear that our spoken words had fallen on ears ill-equipped to decipher our meaning. So, we had to learn sign language – Auslan – to finally get through to her.

We also learned to accentuate the visual as much as possible, to provide images as shorthand for directions, rules, new frontiers, but we were still using lots and lots of words. Enough steam to power Puffing Billy I suspect.

It is a hard habit to break because we rely so much on words and unconsciously expect others, even our own child, to do the same.

With the diagnosis of Amelia’s ASD has come an increased focus on just how important visuals are to her understanding of the world. We are also realising that it’s not really enough to introduce non-verbal cues without a concrete strategy; a clear purpose for using them.

What are we trying to teach Amelia? How will these pictures tell her a story she will grasp and absorb? Will they help her to learn?

For us, they have to be embedded within the routines we are trying to create for her, where life is safe and there are few unplanned surprises. Visuals are becoming like tiny building blocks within a larger structure – the fabric of our daily lives.

Thankfully we have lots of help and support to make this happen. Our Occupational Therapist, Clinical Psychologist and Speech Pathologist (it takes a small village) provide lots of practical ideas and coach us through trial runs at home.

One great recent example of how we are using visuals to guide Amelia through a typical day is an iPhone application called a Visual Timer (pictured above) that we use to smooth out daily transitions. Honestly it is the simplest and most successful idea (courtesy of our OT) that we have tried to date.

One of Amelia’s biggest struggles has always been transitioning from one activity or place to the next. Our days would grind to a (literally) screaming halt over and over again, each time she was told that it was time to shift focus or location.

No matter how much verbal preparation I used to give her beforehand, saying “Five minutes until it’s time to go” was like a red rag to a determined blonde bull.

Now I only need to take out my phone and open the bright clock face on which I can set any length of time I want from a single minute to multiple hours. Instead of telling Amelia how much time is left I can show her. And it’s visual information that can stay in front of her for as long as she needs it.

The proof is in Amelia’s total acceptance of the timer into her day. When it is close to bed time and we are talking or signing about what’s coming, she now says “Show me timer” and will check it from minute to minute to see how much time is left before she dutifully heads under the covers.

If she becomes anxious about when her Dad will be home from work, even if it is hours away, I can calm her down by showing her the pie wedge of time on my phone and leave it in front of her like a visual anchor. It keeps her feet on the ground so she can focus on other things.

Her favourite thing about the clock is the colours. It has a blue shade for timeframes over an hour and pink for anything under that mark. But when it nears the end (less than one minute) it switches to bright green and Amelia waits excitedly as the timer clicks down to zero.

On the clock face, green means that time is up but it also signals something else to me about moving on and forward. The time passes and Amelia understands what is expected of her. She is happier and more willing to bend with the world instead of fighting against its demands.

Beyond the confusion of words there is very real comfort for Amelia in visual cues, and something approaching certainty, in minutes and hours, for us too.