Hayley’s come a long way

Proud Tiger Mother reflects on how far moderately deaf 14-year-old Hayley, who has autistic spectrum disorder (ASD), has come and her bright future ahead.

Firing up the car engine, I sit for a moment to watch the little figure in a black cocktail dress quickly cross the car park to the hall entrance, slightly wobbly on high heels.

A man in a dinner jacket greets her at the door. Hayley turns briefly to me – a swift wave, a nervous smile, but nevertheless a look that hisses ‘Mum, go now, I’m fine on my own’.

That’s my little girl. Except I’m just realising that she’s somehow become something of a grown up. As I drive away, I reflect on just what a long way she’s come, and almost every step of it a battle.

Ever since Hayley was born prematurely, a 4lbs 3ozs scrap, she’s been fighting.

In special care she battled with infections and other problems to be well enough to come home.

“Before her hearing loss was discovered, she fought to keep up”

At school, before her hearing loss was discovered, she fought to keep up. Learning instinctively to lipread, she’d watch her peers closely to see what she should be doing next – eyes like a hawk to compensate for her deafness.

Diagnosed with autistic spectrum disorder (ASD), she struggled to understand the complexities of the social swim. But she fought fiercely to stay afloat, to avoid sinking into the lonely depths of isolation.

She fought back to full recovery after every operation on her ears, from repeated grommets to three mastoidectomies, including procedures to rebuild her middle ear and ear drums.

From the off, Hayley has been battling. And NDCS has helped her, arming us with information to help her, providing her with weekends away and activity holidays where she’s flourished, understanding she’s not alone with deafness and helping her grow in confidence.

And here she is tonight, attending the annual dinner of her Air Training Corps (ATC) squadron where she’s been a cadet for 18 months.

The formal occasion is a far cry from the usual night exercises in which, head to toe in camouflage, they crawl about in the mud in the dark; or evenings spent in a hut learning about aeroplanes and how to clean a rifle; or dressed in formal ‘blues’ uniform for parade.

Hayley recently spent a week in snow-tipped north Wales, in the freezing temperatures of the coldest spring that we’ve just endured, mountain climbing, white water rafting, abseiling and more.

She impressed others with her determination to keep going, hour after hour of fairly relentless activities, climbing as far as the snow line, zip-wiring from the 70ft-high ledge of a slate quarry into the bone-chillingly cold water of a lake. That’s my girl (rather her than me!).

“What she lacks in height she makes up for in toughness”

When I see a photo of her marching with the other cadets, she’s half their size, looks more like a mascot, but what she lacks in height she makes up for in toughness and sheer do-or-die determination. Despite her difficulties, she’s game, up for everything.

Tonight will be a different kind of challenge. She’ll have to look and act like a lady, talk and dine like a lady – she may struggle more with this than the gruelling outdoor survival challenges…!

When Hayley joined the ATC I wondered in this blog how deaf-friendly it would be, voiced my concerns over how she’d cope away from family, school or NDCS activities, where her deafness and her autism are, to different degrees, understood and supported.

It was the first step into a more grown up world, a taste of how life would be for Hayley without a supportive presence to back her up.

Back then, a blog reader posted in response to say how brilliant cadets had been for her two children, one with severe glue ear, the other with moderate learning difficulties. It’d been supportive and accepting and helped both her children to be confident and sociable. And there was a comment posted by an ATC training officer, saying how it fostered independence.

I have to say I wholeheartedly agree. They’ve been great, not made a fuss or an exception for her but just quietly looked out for her, made sure her needs are catered for, been inclusive. If only every organisation was the same.

Hayley’s gained so much – skills, independence, confidence – and has gone from strength to strength.

And now as she starts to cross that threshold into adulthood, I’ve just had a glimpse of the future that once seemed possibly quite bleak and uncertain, filled me with fear for her – now it looks full of hope.

Advertisements