Look who’s (not) talking too

I like to talk. A lot. The vast amount of energy I have in my body often transforms into rapid-fire emissions of endless verbalising, extemporising, riffing, and the expression of random and over-analysed thoughts that ping around my busy head. See, I’m doing it already!

Ask anyone who knows me well, and they’ll probably say I remind them of a cross between that manic savant Jordan from Real Genius (classic 80s comedy) and the Sally Weaver character from Seinfeld. The latter does have red hair and a propensity for high-energy conversation so it’s a solid link.

No-one complains when I lose my voice from illness (happens maybe once a year). Indeed non-medical types around me plump for “better not strain your voice, Mel, try being more silent”. Only yesterday, my friendly local coffee provider recommended I try a decaffeinated beverage to help “dial things down”.

Thanks for the suggestion, but I’m either operating at 0 or 11 and there’s no dimming of the interior lights when they’re burning their brightest.

Unless, of course, you are my controlling, hyper-vigilant five-year-old, Amelia, and you have decided to be the Sheriff of Talk Town. In that case, I have little to no agency and when her little hand reaches for the ‘off’ switch, the time for talking is over.

A curious and sometimes frustrating facet of Amelia’s Autism Spectrum Disorder (ASD) is her anxiety about people speaking, particularly sudden or raised voices or laughter. Anything that signals to her that calm has been disturbed, even if the sounds are essentially happy, at least to our ears.

Amelia is often unable to interpret such sounds as positive ones, and so she becomes highly agitated and on the lookout for ways to lock things down to a neutral (and quiet) zone.

I suspect that her hearing loss plays a role here too, where the increased volume of overlapping speech sounds might come across as distorted and unpleasant, received as they are through hearing aids which can never fully replicate the sophisticated noise filtering of an ear without nerve damage.

I’m also aware how frustrating it must be for Amelia to have to work so hard to listen, hear, and speak so that when other people commence an interaction that is, to her, exclusionary, the sounds might be intolerable.

Whatever the cause, some days are filled with nervous tension as soon as Amelia’s Dad and I try to have a quick conversation, share a laugh or shout to each other from one room to the next; all ordinary sounds of life in a communal household, but to Amelia, they’re like alarm bells heralding something disquieting that needs to be warded off.

She used to shout at us to stop talking or put her body between us to cut things off mid-stream. For a long time we would just wait until she went to bed at night to try and resume a story begun many hours before.

We’re often awake in the wee small hours of the morning, whispering our way through a towering stockpile of unfinished chats and exchanges.

On other days when Amelia’s anxieties are really out of control, she will run from room to room shrieking, “Are you ok, are you ok, are you ok?!” at me if she has heard me sing or make any kind of sound that is presumably coming at her like fingernails on a blackboard (and my singing’s not THAT bad).

She’ll yell at us to “stop screaming” even when our voices are low and moderated as we know they need to be so as not to agitate her. But sometimes it’s hard to do that when you’re having a spontaneous response to something you see on the television or read in the paper.

Or, say, you just like to banter with your life partner.

Amelia’s newest strategy has been the most effective and on some level, at least a little amusing, because in our crazy household you gotta laugh. You just have to.

If I come home from somewhere, filled to the brim with anecdotes to be told, funny stories to impart, Amelia is at the ready with her gun hand, poised to take me out of the conversational equation with devastating speed and accuracy.

She will simply climb onto or next to me and place her hand firmly over my mouth. Not in a creepy way like John Huston’s giant hand silencing his ‘granddaughter’ in the final scene of Chinatown, but it’s not exactly a warm or friendly gesture.

Amelia knows that I will keep trying to talk for as long as I can, underwater, in the shower, wherever I can to feel alive in the world. And she’s absolutely jack of it.

Her preference is for me to remain mute until the conversational winds have passed and no-one has the stamina to keep talking anymore. Or that I should only talk to her and answer her relentless questions about where individual characters on the television screen have gone when they’re off screen and when they’re coming back.

So Amelia employs her patented five-fingered hand clamp on my resistant mouth. She leans in close to my face, lifts a finger to her lips and whispers with some menace, “Shhhh. No. More. Talking”.

Yes, my doe-eyed daughter morphs into a ruthless standover merchant and the steel in her eyes and her voice tells me she ‘aint messin’ around. I’m only just realising how much ownership Amelia claims over me and my face – she has her hands on my cheeks or my mouth all of the time, pulling me closer to her so she can read my lips or hear me more clearly.

She evens signs words in Auslan on my body as well as hers to make sure she’s getting her chosen point across. There’s not a lot of scope for free speech or movement in a relationship as full-on as that.

It’s not as extreme as this all of the time and Amelia’s anxieties peak and trough depending on how calm she’s feeling generally, or how under control her senses are on any given day.

I suspect that her irrational response to our talking has a lot to do with just that – control – the need to dominate us and bend us to her will when so much in her life is far beyond her control.

While we are amused by this ‘game’ of ‘no talking’, after a while you realise that your child isn’t learning at all how to live in a household where sometimes there are people talking around instead of to her and that the sky isn’t falling as a result.

If we simply cave in, Amelia will just steam roll over the top of us until no-one is talking, or sleeping, or walking or having showers alone or just getting on with their day without managing the intense needs of the strongest personality to walk the planet since Mohammed Ali.

She has to learn how to compromise and how to WAIT. They’re important life and social skills and we’re doing Amelia no favours by not pushing back and trying to teach her some behavioural limits.

So when she starts in with the shouting and the mouth-clamping, we have to set a visual timer and tell her that Mummy and Daddy are ok, we’re not screaming and that talking is ok. We are going to talk for five minutes and she has to keep playing with her book or game, whatever, until the timer and we are done.

It’s a battle that’s in its early stages and often five minutes of ‘talking’ will be peppered with lots of yelling and physical interventions from Amelia, desperate to rest the floor back from us. But you have to persist, if you want to preserve your marriage, your individuality and the relative sanity of your home.

We’re nowhere near solving this latest parenting challenge to pop up in our family soup. The minute you think you’ve covered off one problem, another one pops up ready to confound and frustrate.

For now we’ll keep setting timers and having interrupted conversations and hope for the restoration of ‘calm’ someday soon.

Because noise – jokes, stories, laughter, tales – are the spice of a happy family life, and the best lesson I can teach Amelia is how to recognise the positive notes when she hears them and one day she’ll realise that’s it’s safe to join in.

Advertisements

What’s love got to do with it?

Where it all started.

Where it all started.

Since becoming a parent over five years ago, I have received lots of asked-for and unsolicited advice on just about any child-rearing topic you can imagine.

Every parent experiences this at one point or another. When you have a child with special needs – my daughter Amelia is deaf and has Autism Spectrum Disorder (ASD) – there are unlimited opportunities for people to weigh in and give it their best shot.

Many observations are like little gems; I hold them between my hands, turning them over to feel their warmth and absorb the good vibes within. These ones are keepers for sure.

Others, however well-intentioned, delivered by experts or drawn from experience, miss their mark, creating only harsh notes as they glance my shoulder and crash to the ground.

However surplus to requirements these opinions are, I still find myself carefully turning a few of them over in my often stressed-out brain.

This isn’t always a negative or masochistic process. It can be incredibly empowering to drag up some old advice handed to you about your life and see with increasing clarity just how misplaced it was and remains still.

One special example of this springs to mind, and it seems to grow in meaning to me the more I think about it.

The gap between my experience and this particular (I guess well-meant) remark has stretched so far apart you could fit the Pacific Ocean between the places we’re coming from.

It happened during a conversation I had with someone soon after Amelia’s ASD diagnosis was formally confirmed. We had spent many weekends going back and forth to a clinical psychologist and the results, which surprised no-one, were in.

Mostly what I hoped for from people was a simple acknowledgement of the news, and perhaps in that a sort of agreement would be forged among those closely connected to Amelia that we shared the same aims. To help her. To make things better.

That’s my personal definition of support. We confront a problem, give it a name and then we portion it out, dissect it and work out the best way to move forward.

I love her to death, but it's not enough.

I love her to death, but it’s not enough.

But not everyone approaches life this way. I’d begun saying to this person that I was feeling sad for Amelia about her diagnosis but that I thought we could now help her through treatment, but they stopped me and said, “oh you don’t need all of these LABELS, you just need to LOVE HER. That’s all she needs”.

Just love her. That’s all. As though love could ever be enough.

I was a bit shocked at the flippancy of it, at how far the words missed the point, but in that moment I didn’t really know what to say. I was trying to stifle tears and I knew that my thoughts wouldn’t come out clearly or kindly. So I gulped and pushed my response down until I was in a position to consider the comment properly.

There’s something so misguided about saying to a person who has recently received (more) tough news about her child in a family already dealing with so much that she only needs to love her and essentially everything will be fine.

Because everything is not fine. It wasn’t fine at the time and it’s not fine today. And just saying it’s fine doesn’t make things better. It just makes me angry, like molten lava could spew out of my eye sockets at the mere mention of the words ‘just love’.

If love was enough then I would not have discovered fertility issues in my late twenties and that we needed to undergo IVF in order to conceive a child.

If love was enough, I wouldn’t have had to be injected with hormones every morning by my husband for months and months until I was bruised inside and out.

If love was enough, I wouldn’t have had to endure the desperate weeks of waiting to discover if the two fertilised eggs placed inside me would make it. One did. That wasn’t a miracle of love – it was a victory of science.

If love was enough, I would have been able to have more children instead of finding out that my ovaries had withered on the vine by my 36th birthday. Early menopause is not a gift of love nor is the wall you have to build between yourself and the endless questions about why you haven’t had more children.

If love was enough, I would have known instinctively that my cherished only daughter was in fact deaf when I first held her, instead of two long, costly years later. That’s not something that can be undone, no matter how hard we might wish for it.

If love was enough, Amelia would not have also been born with what the doctors call a ‘complex array of developmental issues’, including ASD. We don’t yet know all of the problems we are dealing with so we just attack them one at a time.

I don’t list this roll-call of personal setbacks to suggest I’ve had it harder than anyone else, or that I sit around every day feeling sorry for myself. Compared to Amelia, who am I to complain?

What I’m saying is that it has been my experience at the sharper end of life that love really isn’t enough. Interventions, by science and technology, by expert outsiders like audiologists, specialists, psychologists and so on have been unavoidable and necessary realities in the short story of my family.

Love is a fine anchor, a base from which to spring, a strong foundation, an incredible motivator, but on its own I’m afraid it’s pointless.

Over the last few years I have learned the hard way that work is the thing that, well, works. IVF works when your body can’t do the job on its own. Hormone replacement therapy works when you can’t sleep because you’re sweating six times a night like Albert Brooks in that scene from Broadcast News.

Rigorous and frequent exercise works when your mind can’t take the strain of the things happening to you. Regular tests, therapies and lots of practice work to help Amelia to speak, to be calm, to be well.

Without a doubt, I love Amelia more than I ever thought it possible to love another person. And this never stops, even on the most demanding days when she seems to hate me and the world for dragging her into it without asking.

Love (and Amelia’s early-bird body clock) gets us up in the morning for appointment after appointment with speech pathologists, our occupational therapist, a clinical psychologist, paediatrician, GP, even genetics specialists, but it’s sheer stamina that keeps us going, ever on to the next thing.

If you know all of these things about me, my life, my child and you can still look me in the eye and say, ‘don’t worry about all of that stuff, just hug it out when things get tough’ then you have failed to really see us and understand what we need.

To me, love is acknowledging our pain and our struggles as well as celebrating the amazing progress and milestones that follow. Anything less is a massive negation of that struggle, of the reality of our daily lives in the trenches.

I need more than whatever love is supposed to do for me. Along with hugs (which are great) I also need time, space, exercise, information, silence, solidarity, respite, contact, friendship, conversation, laughter, truth and action, to name a few key things.

If I ‘just’ love Amelia, then what else does she miss? It feels like a code for denial to me and I’m not playing that game. No way.

I wake up every day with a limitless base of love for her, but it’s the hard work and resolve that’s gonna get us over the line. We’ll keep our fairy tales for the night-time, when our toil is done and Amelia is happy, safe and well in the strongest arms designed to hold her. Mine.