On finding solace in the dark

indexPEOPLE OFTEN ask me what autism is, or what it means to have a young child who is on the spectrum.

It’s not an easy thing to articulate. All I can reach for are the behaviours that seem to spring from that enigmatic well.

If you asked me that question today, I would tell you that parenting a child like my daughter Amelia is still much like being on a rollercoaster.

The carriage holding your family might hover on an up-swing for months and you feel that pleasurable excitement of progress in the pit of your stomach.

You yell into the oncoming wind: ‘We’re making it, we’re really getting somewhere! Upwards and onwards!”

But today, like every day for the past six weeks or so, we’re not getting very far. We’re deep at the bottom of a trough and the wheels aren’t moving anymore.

I think they disintegrated on the way down some invisible ramp and now we’re sliding backwards.

In this trough we are locked in yet another lengthy battle of wills with our daughter. It’s the Hundred Years War all over again. We might have taken Agincourt but that doesn’t mean jack in the long run.

Every day is filled with screaming fits, physical outbursts, nocturnal wanderings and ever more screaming.

We have been here so many times before, but my god it never gets easier. We’re nearly seven years in and some days I wonder how much longer I can hold on.

Last night around dinner time when the screaming began for the fourth time, I walked silently into my room and crawled onto my bed in the dark to escape my own child. In that dark I felt no comfort but at least the space was quiet and it was mine.

The dark is the right place for me in those moments. I can’t see myself (or her) anymore, I can only hear the sound of my breathing.

The dark is heavy and that is what I want. To allow the blackest thoughts in my head to wash over me as I lie there. There’s no use fighting them, pounding as they are to get out. Might as well set them free.

Lying on the bed I curl into a ball and weep. I cry because I am so tired I don’t really know how it is that I can function in the day. And because I feel a momentary yet powerful sense of defeat.

In the shadows I know only that I am losing this battle – not the battle to beat Amelia at this relentless ‘game’. Nobody’s playing around here. 

No, I am failing to help her to handle the frustrations that she cannot yet manage on her own.

I hear taunting voices in that dark room too.

They say: “There’s nothing wrong with Amelia. She’s only like this because you are a bad parent.” (Yes, in my head I italicise for emphasis.)

To those voices I say: “Come into the dark with me and see how long you’d last. You know nothing, cruel, hateful voices. Get away from me and never come back.”

Then suddenly into the dark comes my real, live daughter, the one I’m taking refuge from. She puts a hand onto my back and holds it there. I reach over my shoulder to touch her, to tell her she is welcome there with me.

Amelia lies down next to me and curls her arm around my neck. The dark brings no true comfort, but her affection does. She kisses my cheek softly and presses herself into me. The darkness shifts a little and loses something of its heaviness.

I’m no superhuman and I’m not a machine either. The more confronting behaviours that define Amelia’s autism naturally penetrate beyond the surface of my skin.

My resilience is not bottomless. On such little sleep over so many weeks I can feel myself start to fray at the edges. I forget where I’m supposed to be going. I lose my way.

In this state it’s so hard to know what to do to. Sometimes I want to run so far away that no-one will ever find me. But I only ever get as far as that room, where only the dark will do.

And it is here, where all is finally, blessedly quiet that Amelia reaches out and brings me safely back to myself. With empathy and love we hold each other in the dark and start again, as we must, every time.


L’amour actually

Happiness incarnate (first day of school, 2014)

Happiness incarnate (first day of school, 2014)

MY FIVE-year-old Amelia loves school the way that Pepé Le Pew had a case of deep, un-PC l’amour for Penelope Pussycat in the old Looney Tunes cartoons.

It’s a profound, single-minded passion, and like Pepé, Amelia will brook no barriers (in his case, not even a wrongly identified species) between herself and her love for a paramour called Primary School.

Even on mornings when she has spent an entire vomit-punctuated night on the tiles with her weary head draped over a bucket, Amelia will fight hard for her right to go to school.

As soon as I start to say that we might have to pull the pin on the day’s play, she fixes me with a look of desperation, somewhere between sorrow and defiance, and cries, “No Mum! I WANT TO GO TO SCHOOL!’

I have to sneak into the kitchen and quietly call the office to report her impending absence, all the while aware that my school-obsessed child is in her room struggling manfully into her uniform between bouts of wretching, coughing and sneezing.

I don’t know whether to laugh or cry, which just about sums up my experience of parenting such a wild, enigmatic girl.

Eventually Amelia accepts her lot and melds into the couch as she must, but not before many tears have been shed over her tragic separation from the place that gives her so much happiness, so much purpose. So much confidence.

On its own, it’s not such a terrible problem to have, is it? A child who will get ready for school in the blink of an eye and stand at attention by the door waiting for her bus ride, a full 15 minutes before it is due to arrive.

A child who will rush with you from a morning appointment, never tarrying, to make sure she makes it to school before the end of ‘brain gym’ or to the start of music, dance or Auslan; just a few of the classes that have so inspired her mind this year.

But there is one big drawback to all this school time ardour that has the potential to make life very tricky for me.

Equal to Amelia’s adoration of school is her infinite regard for routine. Clearly these loves go hand-in-hand with each other, as school is the central experience in her life that is founded on a strict timetable and the all important ‘knowing what comes next’.

There’s nothing that freaks my ASD child out more than not knowing what is coming next. In the next minute, next hour, week, or month.

We spend our lives trying to quell Amelia’s anxieties through repeated information about timeframes, plans and some form of schedule, but life beyond school is never as predictable as she would like.

Let me tell you, it is downright exhausting to live with someone who never stops asking, ‘and then what? And then what? AND THEN WHAT?!’

So, imagine you are the parent of this rigid, school-loving little person and you realise you have to INTERRUPT THE MONDAY ROUTINE HALF WAY THROUGH SCHOOL TO GO TO AN OCCUPATIONAL THERAPY APPOINTMENT EVERY TWO WEEKS.

Sorry to shout, but only caps would do to express my fear of interrupting Amelia’s weekly routine – of getting between her and her beloved school – and living to tell the tale.

Amelia has grown used to going to speech therapy sessions and other medical check-ups in the morning and then heading on to school. She doesn’t love it, but she’ll tolerate the anomaly. It has a sequential flow she can understand. Plus the end destination is school.

This new arrangement was going to involve me attending school on a Monday for our regular on-site speech session with the lovely CN, and then altering the usual pattern of things by taking Amelia to see her OT. By the end there’d be little time to go back to school so it would make sense to go straight home.

‘Maybe it’ll be ok…?’, I thought with fake optimism.

But a full week before the first appointment, Amelia turned to me out of the blue and declared, ‘No OT on Monday, Mum. I don’t like it. We do speech then I stay at school. Go home on the bus’.

She could not have been clearer about her feelings. I didn’t say too much in case I upset her even more, but I had a familiar sinking feeling about how day one of this change in routine was going to pan out.

On the morning of the new Monday world order, all was going well until speech wrapped up and I turned to Amelia and said, ‘OK, it’s time to go and see your OT now, Meels’. Yeah, right.

It was like she’d been fired out of a cannon, such was Amelia’s sudden and violent desire to escape me and the dreaded idea of leaving school that day. Sling-shot like, she flung her body out of the room and into the school foyer, screaming loud protestations as she went.

I chased after her and CN was hot on my heels. Amelia had sprinted through the foyer and was close to the hallway that led back to her beloved classroom. I did my best to stop her without being overly physical but she was already yelling the school down.

She was NOT going to go gently into that good car park with me, no matter how much I cajoled her or made rash promises of coinage, chocolate cake or park visits on the way home.

Last year, without the insight into the ASD behaviours that drive my child’s engine, I might have tried to drag her with me, force the issue, make her do what I wanted until we collapsed in a tear-soaked heap in one of the many public spaces across Melbourne to witness our mutual humiliation.

Now, I am much quicker to accept a situation like this on its immediate merits, and back off if backing off is required. I looked at Amelia’s stricken face, her sweaty brow, heard the panic in her screams and summed it all up in a matter of seconds.

Turning to CN, who was a supportive presence by my side (sometimes you want people to flee the scene of a meltdown and leave you, this was not one of those days), I shrugged and said, ‘It’s not going to happen today, is it?’ She could only agree.

The brilliant simplicity of a visual schedule

The brilliant simplicity of a visual schedule

And though my plans had failed for the moment, CN chimed in straight away with an idea that was brilliant in its simplicity. She would create a tailor-made visual schedule (see picture) to use on the Mondays when Amelia was due to see her OT.

CN would create one for us to use at home with cards depicting images or photos of things like, ‘bus’, ‘school’, ‘speech session’, ‘OT appointment’, and so on. She would also keep an identical copy at school and spend time during the week talking it over with Amelia.

Amelia’s amazing teacher, PR, was also involved in the planning and offered to discuss the Monday routine with her in class and normalise it as far as possible.

My contribution was to offer to take Amelia back to school after the OT session, even if it was for just an hour, so that she could finish out the day and come home on the bus, restoring some kind of lost balance to her schedule.

It sounds pretty straightforward, but as soon as these strategies were put in place we saw an immediate improvement. With greater visual explanations of what was happening and some time to process the change, Amelia was far more open to leaving the school with me the next time around.

We finished speech, went along to see her OT for a cooperative and happy session and made it back to school for the last activity of the day. The drop off was a bit fraught, but Rome wasn’t built in a day and changes to Amelia’s routine were not going to be solved overnight.

The next fortnight ticked over and I arrived at Amelia’s class to collect her for speech. Her teacher pulled her in close and re-explained what would be happening next.

She suggested that this time when I brought her back to school, Amelia might like to walk back from the front office to class by herself, like a big girl. Like she does in the mornings with the class roll. Amelia nodded in silent but relaxed agreement.

Every two weeks, CN, PR and I were like a crack squad, making tiny but crucial refinements to ‘Plan: Get Amelia to the OT and Back’ and our efforts were paying off. I can’t thank them enough for their intuition, care and support.

When I at last took Amelia back to school, she skipped inside without stress or fear. I gave her a soft hug and said, ‘OK chicken, it’s time for you to go back to class now. All by yourself, like a big girl’.

She smiled at me and the expression stretched wide across her countenance like the brightest rainbow in the sky. It held all the colours of acceptance and shades of sincere thanks for delivering her back into the warm bosom of school.

Because Amelia loves that place like I love Marlon Brando and potato chips, or indeed like Marlon himself loved potato chips; truly, madly and without regret.

I only see spiders

When I first met my daughter Amelia’s Occupational Therapist, MM, we spent some time mapping Amelia’s sensory challenges such as how she processes certain tactile, auditory and visual stimuli and the impact these have on her behaviour at different times.

Then MM supplied me with a valuable analogy to help me understand what is it like to be on the autism spectrum and have your senses under constant attack from assailants invisible to the untrained eye (or ear).*

For instance, if I detect a sudden movement – something small and black perhaps – out of the corner of my eye, my heart rate might increase suddenly and my body tense as my brain calculates the risk and makes the initial assumption of ‘spider!’

But if I turn to look more closely at the object and see that it is only a piece of dark paper, disturbed by a gust of wind from the window, my body will relax. My heart will return to its normal resting rate.

The panic will have proved to be momentary only and I will quickly discard this memory as inconsequential.

For most people, this minor example of ‘fight or flight’ is one in a series of challenges to our senses that we instinctively meet, manage and shrug off throughout the day.

The process is more-or-less unconscious, so that our responses to harsh sounds, bright lights and sudden contact do not spin us out of control. We may experience spikes of panic or confusion, but once we understand there is no genuine threat to our person, we can usually go about our business.

For a person who lives with autism, this process is no less subterranean but is it far from instinctively navigated. The black paper ‘spider’ could be among a cluster of sensory events with the potential to build to a screaming crescendo on any given day.

Or not. It need not be so obvious a threat as a creepy, crawly insect (or a moth – now that would be BAD). Amelia might detect danger in a sudden piercing noise or too many people talking loudly at once (often already stress-inducing for a deaf child), the scratchy sensation on her skin from a coarse shirt tag or a knock to her elbow from a fall.

I may not even realise that each of these things has happened to her; Amelia doesn’t always show outward signs when something is bothering her. But internally, her ‘fight or flight’ instinct is most certainly in overdrive and her panic-ometer has spiked into the red zone.

The final straw could be something equally trivial, like a prized object moved ‘out of place’ from its important couch space to the coffee table, but the resulting meltdown is about all of the mini-sensory events that led up to it.

MM’s analogy about autism and the senses taught me to appreciate how differently Amelia’s brain functions to other people. I only wish that I knew how to anticipate or identify the trigger points to her more distressing outbursts.

But at age five, with deafness and a speech and language delay thrown into the mix, Amelia is not best placed to tell us a lot about how she sees, hears and feels the world. I barely know if she has ever had a nightmare or if she is afraid of the dark. Barbie dolls freak her out though – that much I know for sure.

So for now all we can do is try to read the signs, on Amelia’s face or in her behaviour, that there is trouble brewing inside her mind and body. We can’t control her environment all the time but we can start to teach her how to find tiny ounces of perspective in amongst the chaos.

Or how to breathe when she feels so scared and anxious that she sees danger in every dark cloud, even when the sun is just overhead.

*While there are commonalities, not all children on the autism spectrum have the same sensory processing profile. This post relates to the individual features of Amelia’s Sensory Modulation disorder as identified by her OT.

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.

In safe hands we trust

"Never trust anyone", says "Popeye" Doyle. Amelia would not disagree.

“Never trust anyone”, says “Popeye” Doyle. Amelia would not disagree.

A few months ago, my four year old Amelia fell over at kindergarten and hurt herself pretty badly.

It appears that she had been playing on a boat-like structure in the playground and tumbled somehow, her face taking the brunt of the collision with whatever hard surface met her fall.

No-one’s really sure, because the fall itself wasn’t witnessed by her carers.

Amelia was found sitting quietly to the side of the play area with her hands covering her face. She wasn’t crying. She wasn’t making a sound.

The first adult to approach her saw a dark red substance pooling under her hands and onto the bridge of her nose. “Amelia, have you got paint on your face?” No, turns out it was blood and a fair bit of it too.

In vain, her lovely carers tried to offer her help, to clean her wound, to see if she had broken her nose, to apply a cold compress – to help their little charge. But Amelia wasn’t having a bar of it.

By the time I reached the centre, she was clutching a dirty, blood-stained tissue to her face and would not remove it. On seeing me, I watched her face change a little, registering some kind of release. Her lips quivered and her eyes filled with tears.

Amelia was obviously relieved to be taken into my care and the momentary warmth of my embrace, but she never lost control. She held onto herself and the pain and let me take her home.

I’ve wondered a lot about this incident since. It’s not that my daughter doesn’t feel pain, not at all. But the cost of showing that she is hurt is that people will come at her with their unwelcome hands and heightened emotions.

So, Amelia would prefer to sit quietly and take the pain than risk the unwanted attention of pesky Good Samaritans.  Imagine the self-possession of someone like that. The will that it takes not to cry despite great pain at four years of age.

It makes me worry for her, because as much as I want to respect her limits – those defensive walls she needs to erect between herself and the world – everyone needs a little nurturing some of the time. Noses need to be checked for breaks and blood has to be washed clean.

But how do we make Amelia feel safe enough to let us parent her? How can we help her to soften her tough-guy “Popeye” Doyle exterior enough to be comforted?

Amelia leaping into a brave new world and the safe arms of her OT.

Amelia leaping into a brave new world and the safe arms of her OT.

I was at a bit of a loss with all of this until September this year when we started working with our Occupational Therapist, MM. Her intuitive, hands-on treatment program has created some space for Amelia to let her guard down a touch and open herself to new guiding hands.

For a child like mine with Autism Spectrum Disorder, Occupational Therapy (OT) sessions serve multiple functions. They are designed to be open and flexible so that she doesn’t feel overwhelmed or pressured.

Through this loose structure, MM is building trust, but there are rules too. If we start a new game or activity, the old one has to be cleaned up and packed away.

If Amelia kicks up a fuss about having to conform to these rules, we do not bend or back away. We just wait until she is calm enough to play again.

The effect is to create a safe environment where Amelia feels a degree of control and a lot security at the same time as her social skills are being tested and developed.

She is being taught how to wait, how to negotiate, how to live in a world governed by rules and the needs of others.

Gradually, I have watched my tough, inflexible girl change from someone who was frequently intolerant of the (not unreasonable) demands MM places upon her in each session, to a mostly willing and enthusiastic participant.

Amelia is beginning to shed a layer of deeply engrained fear and anxiety and is more ready to be guided, touched and taught than ever before.

Some appointments are held entirely in a brilliant sensory room filled with cushions, mats, swings and slides. In this room, we are testing the types of activities and sensations that work best to calm Amelia down, regulate her often haywire senses and give her lots of stimulation without triggering meltdowns.

There’s a large swing in the centre of this space that requires a lot of balance to stand or lie on it. At first, Amelia was reluctant to try it. But very quickly she became keen to jump on board, with me as her initial passenger.Then she graduated to swinging solo, knowing that if she fell there were mats underneath to break her fall.

In essence, that’s what these sessions are all about: providing a safe platform for risk-taking and bravery. For going beyond the limits of Amelia’s slowly expanding comfort zone.

These days she is like a Cirque du Solei trapéziste in training while looking unquestioningly to her coach, MM, for encouragement. Lying on her stomach, Amelia is encouraged to pull herself forward holding ropes or MM’s hands, locking eyes with her in total trust.

I will never tire of seeing her face like that – so alive with the happiness of letting herself go, of flying without fear when there is a safety net ready to catch her no matter how high or fast she might go.

The swing involves tough core work, the kind that would challenge the most avid gym junkie, and it is teaching Amelia to push herself beyond the point of frustration to greater strength and confidence. She is now more aware of her body and what it can do. And it can do so much.

There are of course rewards for this level of commitment. The other day, after the tiring physical activity of the session was complete, MM invited Amelia to lie on the floor as the ‘meat’ in a cushioned ‘hamburger’. One thick mat was placed on the floor and without hesitation my girl lay face down on it, waiting excitedly for the next fun thing.

It was relaxing just to watch Amelia in still repose.

It was relaxing just to watch Amelia in still repose.

The therapist then grabbed a second mat and pressed it onto Amelia’s back, applying deep pressure to her small body.

After the exertion of the physical work, this pressure clearly had an instant soothing effect, bringing her sensory levels down to a calm place where balance was restored.

Then, MM took a small Swiss ball and moved it over Amelia’s body in circular motions, applying more pressure to her prone figure. I have never seen her so still, so content. So relaxed.

Her eyes rolled back in her head and she closed them for a time, simply enjoying the bliss of the deep massage.

In this pose I could see her register, perhaps for the first time, that touch does not have to be feared or rejected and it can offer so much more than mere hands or bodies making incidental contact.

In her OT sessions, Amelia is stretching herself to new physical heights and we are all learning how long it takes to exhaust the seemingly boundless energy that burns inside her. Her social skills are improving and she is beginning to appreciate the benefits of contact tailored to suit her needs.

I am discovering that there are many more ways to reach my daughter than I ever thought possible. MM has helped me to understand and accept that when Amelia hurts herself or is in need of comfort, it is not a rejection of me if she cannot tolerate my arms around her for more than a second.

She may never let me hold her the way I still long to but Amelia does need the security of contact and care, just not in the way most people expect of a child.

So, I will be more than happy to let the cushions, mats and balls we have acquired for our home therapy program be an extension of my mother’s arms – reaching out to be close to her, offering protection, relief and all the love I can give.

Mermaids for merit

MermaidAt the end of one particularly challenging day with our daughter Amelia, in what sometimes feels more like a warzone than family home, my husband turned to me and in true deadpan style said, “they’re going to give us a VC for this”. Not for valour perhaps, but for stamina definitely. Or maybe survival.

Just who might award us the prestigious Victoria Cross for parenting in said domestic warzone, well, I’m not really sure.

And I don’t think the Jacka Boulevard in St. Kilda is in any actual danger of being re-named in our honour, but at that moment a VC seemed like the least “they” could give us.

Decorations, awards or prizes, either real or imagined, are important I think. For me, the reward is being married to someone with a whip-smart sense of humour who can cut through my darkest moods and elicit laughter instead of tears.

For Amelia, coping with deafness and autism in a world that’s not exactly fit for purpose, the opportunities for prizes are slim. Simply making it through the difficult day, the stressful hour, usually takes more than mere gallantry on her part.

Some days I want to pin a medal on her just for making it over new hurdles and managing to be such a wild and wonderful human being into the bargain.

Other days, there are no deeds to be rewarded, no behaviours to be mentioned in dispatches. I close the blinds and wait for the dusk and hope for a better one tomorrow.

But you have to keep a sense of perspective about things like this. I would, for instance, give Amelia a thousand dollars if she would sleep past 7am. Just once. Perspective’s a very individual thing.

I have actually assembled a box of “treasures” (read = toys that cost no more than $2 at K-Mart) that she can dip into if she makes it to 6am each morning without appearing by our bedside. I’m sad to say the box is still filled to the brim with handpicked delights.

Clearly, the lack of treats is not harming our daughter’s psyche too much. One recent morning, when Amelia trotted into our bedroom at her customary wake-up time of 5am, she smiled, stretched like an evil cat and said “Oh well, no present!”. It was the four-year-old’s version of “C’est la vie!”

In our situation, I think there is a need to sometimes reward behaviours that come quite easily to other children. We’re not dealing with an ordinary person who acts in a predictable way most of the time, so there are occasions when special rewards are bestowed with good reason.

Two weeks ago, Amelia and I went to her regular speech therapy appointment. Suffice to say it was an unmitigated disaster. My daughter did her best impression of Linda Blair from The Exorcist as I, Ellen Burstyn, cowered in a corner to avoid the torrent of screams and kicks aimed in my direction.

There was no pea-coloured vomit and I didn’t see her head spin all the way around, but she hit some serious Mercedes McCambridge high notes in her demonic performance.

On Tuesday we returned, and I admit to being nervous about how the session would go. Amelia assured me she would not be angry or scream or try to hurt me, but inside that room I knew she would have little control over these things if the environmental patterns didn’t align the way she needed them to.

Yet align they must have, because for 40 minutes her angelic face matched the serenity of her demeanour and despite tiny ripples in the pool of her mind, Amelia played well and learnt well too. It was fantastic.

Like me, our speech therapist, PP, understood how impressive Amelia’s calm and cooperative effort that morning was so she decided to give her a merit award. It was only a rudimentary certificate with mermaids on it, but my girl was transfixed, her eyes shining with delight.

Mermaids for merit and every one earned

Mermaids for merit and every one earned

PP spoke out loud as she wrote Amelia’s name on the paper and outlined the reasons for her award, namely, for “playing and for being a good girl”.

It doesn’t sound like much, but when PP handed it over, my dear girl accepted that certificate and pressed it to her little chest with pride.

Because it meant something to her to have her good behaviour acknowledged and enshrined on a personalised artefact that was hers to keep.

I could see it on her face, that happiness as her eyes closed for a second to pause on just how good it felt to win something.

And it was a win. Every time Amelia is able to sit for a while longer and learn a little more, not just about speech and language, but also how to observe the tricky rules of play, she is gaining more of the social skills she needs to cope in the world.

For the rest of the day she showed every man, Nan and her dogs that merit award and it made it onto the fridge next to her animal magnets and her cow drawing with the fur appliqué.

I sent a photo of Amelia holding it to her Dad because I needed to share it with him as much as he needed to see it. Small things, tiny rewards, are enormously significant to us all these days.

Although, I still wouldn’t say no to a VC. Or a thousand dollars. Or even just one decent night’s sleep.

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.]