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.

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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.

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.]

Senses working overtime

Defence against the senses (and my one chance to reference XTC)

Defence against the senses (and my one chance to reference XTC)

Finding out that your child has an autism spectrum disorder (ASD) is a bit like reading the last page first in an Agatha Christie murder-mystery.

Through the big reveal, you might learn ‘who dunnit’ from Hercule Poirot or Miss Marple, but you can only guess at the what, how or why of the events leading up to that moment.

By this, I’m not referring to the missing pages of cause and effect that remain hidden behind my daughter Amelia’s latest diagnosis.

To me, the pursuit of causation seems like a completely fruitless and time-wasting preoccupation when emotional and intellectual energies need to be spent in much more constructive (and urgent) ways.

Searching for some random reason to explain what caused Amelia to be born with a disorder that some refer to as ‘atypical’ neurology, is about as helpful as locating a needle in a haystack only to find that the eye has rusted over and you have no cotton to thread anyway. And you really hate sewing.

What I mean is that we have an answer to one big question (is it autism?), but we are no closer to understanding the associated behaviours, to knowing why our daughter finds aspects of her life so difficult, or how we can help to ease her passage through life.

The bigger mystery than autism, which was not really an unexpected narrative twist for us (though no less painful), is the triggers for the autistic behaviours, like her meltdowns and hyperactivity.

But there are clues. You don’t have to be as clever as Poirot (or have such an impressive moustache) to read signs of significance in the way Amelia acts in certain situations and not in others to begin to draw some amateur sleuth conclusions.

Take, for example, her almost textbook behaviour as the ‘compliant child’ when she attends kindergarten across three days of the week. She is able to follow routines, generally does what is asked of her without complaint, actively participates in activities set up for her and does not act out at all.

Amelia the kinder-goer is the very model of a cooperative, well-behaved and calm child. That is not to say that her personality is subsumed by this conformist way of being. She’s not a robot; her independent spirit is detectable beneath the surface, but it seldom comes out to disrupt play.

It is simply that she is working very hard to observe and puzzle out the rules of the kinder game. I think there is security for her in knowing what to expect of this environment and what kind of behaviours are expected of her. Following an explicit routine and the lead of others provides her with a perfect map for fitting in.

Sometimes Amelia’s teachers spot her in a corner, silently acting out play she has seen performed by other children, or she signs conversations to herself. It’s like a dress rehearsal before she decides to step onto the real life stage of social interaction.

This mostly compliant version of Amelia is not, however, the child that I take charge of at the end of her kinder days. The moment I pick her up she switches gear into full-throttle girl, almost like the sight of me or the touch of my hand releases a pressure-valve inside of her.

She throws off her cloak of flexibility, of quiet observance and obedience and lets her wild hair down in the carpark.

It’s a battle to get her to notice, let alone watch out for, the buses, cars and people as she dashes ahead of me, heading for the two giant volcanic rocks that reside in the garden near the carpark. Her hometime ritual – and it is the same everytime – sees her scale each one and leap to the ground before we make it to the car.

More than half the time, our journey home will be punctuated by an epic screaming fit in the back of the car. On the surface, the spark that lights these fiery outbursts is my failing to ‘get right’ something that Amelia wants to tell or ask me, like naming an object for her that she can see (but I can’t), interpreting a hard-to-understand question or retrieving a toy that has fallen beyond her reach (I prefer a ‘two-hands-on-the-wheel’ approach to driving as I don’t want us to die).

It’s a miracle we haven’t crashed many times over, but I’ve become quite skilled at blocking out the resultant shouting and flailing from the backseat and dodging the toy missiles aimed at me in the front. Amelia is a Jonty Rhodes in the making, you know, if the wicket is my head.

Sometimes the afternoon will continue in this upsetting vein, as her rage spills from the car and into the house until we’re both emotionally spent.

But what’s really going on here? I used to think the X-factor was all me, the ‘bad’ mother. I knew how well-behaved and engaged Amelia could be when I was absent, so naturally I associated her meltdowns with my way of parenting her.

Now, I’m beginning to see things differently. Ellen Notbohm (mother of sons with autism and ADHD) writes that for many children on the autism spectrum, sensory perceptions are disordered and can become overstimulated in certain situations.

These children can be deeply sensitive to the ordinary sights, sounds and sensations of daily life and feel under siege in environments where their senses are likely to become overloaded.

Bright lights, loud music, pungent smells, certain textures on the skin, all can combine to push the autistic child over the edge; it’s just too much sensory stimulation for their brains to sort and filter.

Imagine the impact of this often stressful way of receiving signals from the world, and then picture Amelia at kinder, a setting filled with competing stimuli and demands, where she spends between six-eight hours at a stretch.

It is remarkable to me that she is able to cope so well with these days, to try and understand what the rules are, figure out how to behave and to remain composed while her senses are working overtime.

Amelia’s paediatrician, KS, offered further insights into just how great a feat it is for her not to unravel during the kinder day. Because she is deaf, Amelia’s brain is already highly taxed by the effort to listen, hear and translate the sounds coming at her through her hearing aids.

Despite her deafness, she seems peculiarly, but not uncommonly sensitive to certain loud sounds. Amelia has started to say “too loud” and hold her hands over her ears when music blasts out of the PA at kinder.

Our one disastrous attempt to take her to a cinema had to be abandoned quickly. The music was so intensely loud and she couldn’t stand it, tearing her hearing aids out to find some relief. That’ll teach me.

It pays not to assume that a deaf child cannot be hypersensitive to sounds of a certain pitch or frequency, especially if autism is in the neurological mix.

With these new ways of understanding just how difficult everyday life can be for Amelia, it is no wonder that when she is released from her kinder day and the pressure to comply and cope with the situation, that a meltdown is so often the result.

It’s like that feeling you get when you come home from work and you close the door behind you, kick your shoes off and expel the effort of the day from your lungs. Home is a sanctuary, and you don’t have to pretend to be polite or obliging or anything other than your true self.

Again, our paediatrician gave us some reassuring advice on this score. She told us that it is precisely because Amelia feels so safe with us, so loved and protected, that she can exhibit her most challenging behaviours without fear of the consequences.

We provide the sanctuary for her to kick her heavy shoes off, and hopefully duck at the right moment should they fly towards our heads.

Now we understand a little bit more about the potential impact of specific situations on Amelia’s behaviour, it is important to be mindful about just how intensely she’s working to defend herself – either through detachment or anger – against a sensory chaos that is beyond her control.

The mystery might be incomplete, but we take this emerging knowledge about our daughter as a reminder to be ever-compassionate for her struggles, even on the toughest day in the hardest week.

Because the tiniest hint or evidence of Amelia’s need and love for us, even when her hands and voice seem to push us away, is greater than any big reveal delivered to us on the final page.