The ice girl cometh

Warrior girl with water weapon

RECENTLY I found myself caught up in the wacky Ice Bucket Challenge sweeping Facebook feeds the world over. You might have seen one of these videos, where some poor, charitable soul stands nervously in a suburban backyard, waiting to be drenched with ice-filled water by delighted relatives enjoying their role a little too much.

Yep, that was me a few weeks ago. I was ‘tagged’ by my good friend CM to take up the challenge and once you’re ‘it’ there’s no such thing as ‘keepings off’ or ‘barley’.

So I stumped up and took my freezing cold medicine. For the good of the cause (motor neurone disease) and because I didn’t want to be called a wuss. I know, I’m not about to win a humanitarian of the year award.

But I do know someone who would have taken that ice bucket challenge by the horns and never let go. She would have relished it, and asked for more and more buckets until she’d beaten the Guinness Book of Records benchmark that might apply to a weird new age phenomenon such as this.

Who is it, you ask? Some hard-skinned ranger type who feels no pain and crushes all opponents in their wake? No, I’m talking about my five-year-old daughter Amelia, who is on the autistic spectrum and is wildly PASSIONATE about the sensation of very cold water on her skin.

I first noticed this strange sensory trait when she was about two and a half. One afternoon during the winter time, I saw her outside with a bucket of cold water she’d filled when I wasn’t looking. She proceeded to fill a smaller bowl with the water and pour it repeatedly over her head and quivering body. It was quivering with the cold no doubt, but also with powerful exhilaration.

For a moment I watched at the window, transfixed by the scene. Amelia’s beautiful round face was a study in elation, in euphoria. She appeared totally unbothered by the frigid temperature of the water. Instead, it was a delight to her and she welcomed it without fear or hesitation.

I was torn between wanting to leave her be for a while longer to enjoy being at one with the water, and the mothering instincts which compelled me to gate-crash this spontaneous garden party and throw a big towel over it. And her.

Other times I found her in our backyard with no clothes on, holding a gushing hose in the air so the icy plumes of water would fall straight down onto her head. Amelia treated the water with reverence, as something deeply special to her that only she could understand.

It’s true that my girl had never enjoyed warm water, especially in the shower. My attempts to add just a little more heat to the stream from above were always instantly detected. I couldn’t get past my child’s incredible sensitivity to the temperature and how it felt on her skin.

For quite a long time this need in her worried me a lot. Every time she’d ask for cold shower water as she sat in a shallow (warm) bath below, we’d wrestle with the taps and I’d think ‘I can’t let her sit in freezing cold water, can I?’ Old sayings about catching one’s death hovered close to my ear and increased my anxiety.

But Amelia doesn’t feel cold water the same way most people do. You only need to see her at the beach out of season when the water is still too chilly for mere mortals to enter; there she is – my little Tommy Hafey child – striding out determinedly, into the deep folds of all that delicious cold.

I think for Amelia, the love of cold water is a combination of the intense feelings she gets from the pressure of the spray and the glacial temperature itself. These elements create a sort of rapturous response in the nerve centre of her body – I can see it in the excited flapping of her arms, the full-body shuddering that makes her squeal likes she’s on the joyride of her life.

After years of watching her relationship with cold water unfold, I now understand that it isn’t bad for her the way it might be for a different child who could not tolerate the icy temperature at all. Or an adult forced to endure a freezing bucket of water tipped over their heads for the sake of charity.

Embracing the challenge of cold, cold water

Embracing the challenge of cold, cold water

Now most nights, after Amelia has agreed to conduct her clean-up in a ‘nice’ warm bath, I give her five minutes (give or take) under the arctic torrent from the shower overhead. I peak behind the curtain to steal a glimpse or two of her big, round face, held up in exaltation to the pure thrill of it.

Bath times have been harrowing for us for many years. The allowance for icy, cold water when my daughter desires it has made things a lot better. Sometimes it even calms her down, as though the (welcome) shock to her body from the shower helps quieten those other feelings that can send her out of control.

And in relaxing the house ‘rules’ around water I can also see a little glint of thanks in Amelia’s dark eyes. ‘Mum is finally working me out’, it says. She is giving me freedom to be myself. To take a million ice bucket challenges if I want to.

But it’s not a challenge for her at all, it’s simply a way of being, a way of life. Trust a child to be so deliberately fearless.

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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 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.

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.