Taking the lead

In this photo, Amelia is doing her regular hearing test in the familiar sound booth at Australian Hearing. Normally, she’d have company at the little table with her; her audiologist, IS, helping to prompt her through the listening drills and me, her eternal cheerleader, wearing headphones and an encouraging smile, a poker face, whatever it takes to keep her focused.

But this week, IS decided that Amelia was ready to sit at that table on her own, to take the next step in the lifelong process of checking her hearing levels for change. As she gets older and more engaged with the tests, the need for hardworking mascots and helpers is receding. Amelia is not a baby anymore and it is time for her to rely on me less and less.

So here she is, my big girl all by herself at her little table. Without much explanation about this new set of expectations, IS kicked things off with me consigned to the back seat next to my Mum. Forever my supporter, she was as much a third wheel as anyone in that booth but I still held her hand like I always do.

Amelia simply took control and set about completing her ‘job’, looking up to IS for affirmation, but not behind her. She knew we were there but she really was ready for greater independence. I couldn’t have been more proud as I watched her back, her hands, her head – the calm language of her body – as she drove that test on home.

Next time, Amelia will sit with IS in her office at a much bigger, adult table and they’ll work on the test together. Like equals. Eventually, I won’t be in the room with her at all but I’ll be more than happy just to wait in the background while she takes the lead.

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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.

‘F’-sharp major

Amelia needs a helping hand to form certain sounds with her mouth, tongue and teeth. Here, my daughter’s wonderful speech pathologist gently guides her to the motor movements that will help her to say her first clear ‘F’ sound.

We’re ending the year on high notes it seems, with unhoped-for progress and the promise of new sounds we’ve been longing to hear.