In a garden state

Happiness is a warm trampoline

Happiness is a warm trampoline

If I think back on the last six months, I can honestly say that the turbulence that characterised our family life for close to three years has been replaced by a new and unhoped for sense of calm.

Things are suddenly more smooth-edged than exhaustingly jagged and uneven.

The colours that surround us are bright and pleasant; flashes of fiery red appear in the corners but they don’t seep into the centre.

We are happy.

Since our daughter Amelia was diagnosed with autism spectrum disorder (ASD) last year, we have taken great steps towards understanding who she is and what she needs to feel less at sea.

We now know she needs lots of intensive, physical activity at frequent intervals throughout the day to reduce the stress on her overloaded senses. Our house can double as a fully-equipped play centre at any given hour for just this purpose.

Physical therapy opens Amelia up to communication, to learning new things or changing long-entrenched, negative behaviours.

An ASD child under siege is not capable of weighing up the pros and cons of toilet-training or staying in bed – they will dig deeper into a hole of defiance unless you find the right way to tunnel through to the clear air.

It is still early in the journey of course, and each day brings with it challenging variables in behaviour, in mood. What worked yesterday might need a tweak tomorrow but the basic set of strategies is usually the same.

It may sound like an overstatement but it has been revolutionary to find a few really good ideas that work after throwing thousands at the wall with most missing their intended mark.

The proof is not just in how much calmer Amelia is than the child who used to scream for hours on end, or how much easier it is to help her when she is anxious, angry or scared.

It’s also in how much better prepared we are when the delicate balance we try to maintain everyday goes awry. We are reminded that control is never a sure thing; no child (especially Amelia) is predictable and we are in a much better place to weather a sudden, isolated storm.

A garden watched by David Hemmings never boils

A garden watched by David Hemmings never boils

Take last month for example, when we ventured out to meet family at the Royal Botanical Gardens for an early morning walk. We’ve enjoyed the best of times and worst of times with Amelia in these gardens but we always love taking her there.

It was a beautiful summer’s morning but the café area where we parked ourselves was surprisingly quiet.

We were sitting enjoying some coffee and scones and Amelia had grown bored of the adult conversation and was skipping happily around the concrete space close to the lake.

Then, as luck would have it, she ran too fast for her feet to keep up with and came crashing down, tearing her pants and skinning her knee.

While Amelia hates being helped or touched when she hurts herself but she has been getting better at letting us near her without flying off the handle.

Sadly, this was not one of those days. Her Dad jumped up and moved slowly towards her. He knows not to be too forceful or crowd Amelia with lots of talking or touching if she is hurt. His voice was gentle as he sat beside her, “Are you okay?”

But it didn’t make any difference. She was about to disappear into the red haze of a full-blown public meltdown and no amount of sensitivity would bring her back.

It’s a bit like watching a seesaw hovering on it axis for a moment and waiting to see which way it will fall. On one side, Amelia might not react to the sudden shock of pain at all. Tilted the other way, the seesaw can fall heavily on the side of panic, anxiety and rage.

Today was an angry seesaw kind of day. I saw her start to wind-up and I instantly went into battle mode. Coffees, plates, scones, swans, company – it all ceased to exist to me as I made my way over to Amelia who had moved rapidly from fight (screaming, crying) to flight (running for the lake’s edge).

She was inconsolable. I could see that her knee was very badly grazed and bleeding but I knew she wouldn’t let me look at it, let alone tend to it. My first job was to physically restrain her as she tried to escape by jumping into the water

Our daughter had become a mini tornado and she was chewing up the garden scenery as her meltdown spun further out of control.

Of course people stared, I’m sure I would have. Amelia was quite a sight (and sound) to behold. But as opposed to previous years where my primary worry was what strangers were thinking about me and my child, I discovered in this moment that I didn’t care about them or their thoughts at all.

My husband and I were like a united swat team of two. We didn’t turn on each other (another thing common to the past) but we were blunt and to the point. In the maelstrom there’s no time or place for politeness.

I barked, “We have to get her away from the water and to a quiet place so we can help her”. Amelia was not happy when her Dad lifted her then so she started pummelling him, scratching and tearing at him as we pushed our way to the safe haven we sought, nestled on a hill with hedges for cover.

Once we made it to that space we were stuck there for the next 30 minutes while our poor, distressed child screamed and wailed and tried to gather herself. Our role was just to sit with her, talk calmly, and wait. Just wait. There’s really nothing else you can do.

Amelia desperately wanted a band aid to cover the sight of the wound on her knee. She’s had this visual aversion to physical injuries since she was very small. A bad toe cut was covered by her with a sock that had to be worn in the bath every night for over a week.

But I had chosen this day to be unprepared with the most basic of first aid remedies. So instead we practiced taking deep breaths together. I would show her a big inhalation and ask her to try and copy what I was doing.

I watched Amelia valiantly draw a lungful of air into her little chest and then another as her lips quivered from crying and I have never loved her more. For a moment these breathing exercises seemed to work their magic on her and her expression would relax, soften just a little.

Then her face would crumble again and the distress would return. We sat there for ages just taking deep breaths, holding Amelia’s hand, comforting her as far as she would allow, and protecting her from the harm she might do to herself (and us).

In that secluded section of the gardens we had managed to throw a blanket over us, underneath which nothing else mattered except making sure our girl felt safe while the storm passed. No stares from strangers can penetrate that.

Sometimes, being in a family like ours, you can feel like you exist in some alternate, surreal reality to other people and this day was no exception. Would enlarged photos of the park that day even show we were there at all, like in Antonioni’s Blow-Up?

It’s hard to say, though I suspect an audio recording would have picked up our presence pretty well.

On the shoulders of a parental giant

On the shoulders of a parental giant

After what seemed like an eternity, Amelia regained enough composure to leave the gardens, but only if she could ride on her Dad’s shoulders.

It was a long trek back to the car and that poor man’s back was close to breaking point by the end. I valued every step they took together knowing we were closer to making it out and home.

Yes, our outing was most definitely ruined, cut off before it had really begun. We have spent many days like this one and they used to crush me and fill me with despair.

But on this occasion I felt curiously content. Maybe it’s because we understand more about what tips the scales for Amelia and sends her into an epic meltdown like this one.

We appreciate better than ever before that she can’t help it. She is not being naughty or deliberately wilful or trying to hurt us.

And she is suffering, so our job is to be there to do whatever she needs us to do. If that’s sit in a park for 30 minutes practicing deep breathing until the panic and distress subsides, then that is what we will do.

As my knowledge about Amelia’s ASD has grown, so my compassion for her has deepened. When I was sitting on the grass holding her hand I wasn’t feeling sorry for myself because it had all gone wrong. I only felt sorry for my little girl and the weight of what she has to endure.

I didn’t indulge in self-pity, because even though we sounded and looked like a mess of a family, with all of the screaming and scratching and weird breathing, we were a total boss of a team out there.

Nobody sold anybody out on the green and no-one was left behind. We arrived together and sure, we left as a much less merry band of three and my husband was temporarily crippled, but we made it home together and that’s all that counts in the end.

Advertisements

Good vibrations

Great composer, terrible movie.

Parenting and privacy are about as compatible as warring armies facing off in the heat of battle. Or Russell Crowe ‘singing’ show tunes in the film adaptation of Les Misérables.

Doors blissfully closed, toilet breaks taken in peace, showers enjoyed in quiet solitude: all these taken-for-granted ‘you’ spaces are rapidly and irrevocably invaded by ‘them’.

The boundaryless child, whose chief aim as they grow and increase their gross and fine motor abilities is to keep you in full view and on tap at all times, cares nothing for the selfishness of time spent alone.

This process took a while to take root in our home. For her first few years of life, our daughter Amelia was very slow to crawl, to walk, to really care that much where her parents were at any given time.

She was born deaf and no-one knew this until she was two, so I guess Amelia was learning to live inside an impenetrable private space of her own. Our words could not puncture it until her hearing aids switched her on to the sounds of life and her parents reaching in to grab her.

Since this momentous time, our girl has taken great strides to bridge the gaps that existed between us. It’s hard to recollect a time before she was forever at my shoulder, by my side or in my bathroom – my constant, wonderful, infuriating companion.

Sometimes I long to just shut the door behind me as I hastily jump into the shower and not hear Amelia calling me, crashing the door open and dragging all of her ‘stuff’ in to camp out on the floor and harass me with endless questions. So many questions.

But at the same time, those questions are a daily gift, a reminder, of just how far she has come in learning to speak, to need and tell us her mind and her heart. To find her way out from dark rooms shaped by deafness and autism.

So the other day when Amelia came to me once more, in our tiny bathroom not fit for swinging cats or wide towels, and asked to join her Mum in the shower, I could hardly deny her.

I nodded my head and in a flash she ripped out her hearing aids and placed them buzzing on the vanity before piling in with me behind the shower curtain with its brightly coloured spots.

Occasionally she likes to sit at the opposite end of the bath to me, letting the water fall onto our legs as we play boats or some silly game. We like to hold our hands under the warm stream from the tap above and enjoy the sensation.

This day, Amelia came and sat in my lap – so close – and lay her small back against my front.

It is truthfully the most happy you will ever find me, with my daughter who dislikes being held, volunteering to lie on me and enjoying the pressure of our skin-on-skin.

She held my hands and pressed her fingers into my face and my legs. And then I started singing, this crazy, high pitched, mock-soprano warbling I have a tendency to unleash in the shower (and all around the house).

I sent a big high note out into the room and the vibration in my chest went through Amelia’s back and she paused for a moment before suddenly responding in kind. A big, atonal set of notes flew from her mouth and into the air, soaring high to meet mine as they fell.

And we didn’t stop for anything. My beautiful girl, who without aids cannot hear more than fragments of the sound produced from my mouth, was feeling it now through my body and we were locked in a double act for the ages.

My singing was echoed in hers, as was my joy reflected in her beaming expression. Not until my husband was roused from another part of the house and came to see what his mad women of the shower were up to did we break from our performance.

I may not have any privacy to speak of and there are no doors that stay closed for long in my house, but happily other obstacles continue to shift and open just a little. Just enough to let me hold my sweetheart for five full minutes and reach her through my body and the power of song.

Piano palmistry

At the end of last year, my daughter Amelia graduated from her kindergarten class. As seems to be the custom these days, even for children so young, her school fashioned junior mortarboards out of black cardboard and printed special certificates to mark the occasion.

The mini graduands even had a small stage upon which to stand as they received their laminated diplomas.

The use of academic paraphernalia to honour pre-school achievements had seemed a little over the top to me.

That was until I saw Amelia and her friends take it in turns to leap from the stage-end with unrestrained glee.

I watched them clutching their flowers and personalised documents with raw delight. Check your cynicism at the door, woman, because it is not welcome here.

This group, which had become so close during the year, really seemed to cherish their final minutes together. They hugged each other tightly and we, the parents, held onto the sight of them gathered for the last time.

To cap off this momentous day, the school’s art teacher came to collect some children to be part of a special project.

The school had been chosen to decorate one of the small street pianos to appear in the Melbourne arts precinct over the summer as part of the ‘Play Me, I’m Yours’ community art installation.

Did we want Amelia to come and put her handprint on the piano in black paint? You bet your sweet Steinways we did.

The teacher led our girl into the art room where a small upright piano stood front and centre. It had been painted with bright, vertical stripes of red, blue, green, yellow and orange. To complete the design, little hand prints were gradually being placed across the surface of the instrument.

Amelia’s palm was dipped in paint and she knelt down under the keys to carefully press it onto a section of blue stripe. I looked in fear at that black hand and her clean, yellow dress, but the teacher was like a magician. Now you see a paint-spattered hand, now you don’t.

The generous teacher then mentioned something to us about where the piano would be located in January but we were too caught up in the events of the morning to commit it to memory. It was enough that Amelia, who had come so far in a year, would be moving on from kindergarten to the big leagues of school.

Leaving her mark in indelible black paint seemed like the most apt way to end things.

Almost a month later, Amelia’s Dad and I were walking near the back of Melbourne’s Arts Centre. We had tickets to see a famous (and as it turns out not very funny) British comedian, so we were killing time in one of our favourite parts of the city. Yeah, that Jimmy Carr is a must see for anyone with a love of finely-crafted one-liners about disabilities and kids with special needs.

As we rounded a bend on the terrace I saw it: the stripy piano with its distinctive hand prints made by the students of the Furlong Park School for Deaf Children.

I couldn’t help myself, I jumped into the air and exclaimed loudly, giving my husband a start. It was the unmistakable sound of happiness. Of joy.

Because I’d forgotten all about that piano and Amelia’s palm print so carefully planted there. But seeing it out in public, seeing people playing it for the free enjoyment of others, I felt an overwhelming sense of pride.

The piano was decorated as a gift to the community and finding it by accident on that warm, summer evening felt like a gift to us too. No-one needed to know the identity of the little artist who’d given her right hand print for the sake of art.

But we did. The secret was ours to share and we couldn’t stop smiling. Well, at least until the ‘comedy’ show started.