Going the distance

Whatever you do, don't drop the baton

Whatever you do, don’t drop the baton

Parenting sometimes feels to me like an extended relay race with multiple batons – let’s call them challenges, diagnoses, worries, crises, whatever fits. You think you can hand one off as you grab for the next one but it just doesn’t work like that.

No, you end up carrying them all in a messy jumble and hope like hell they don’t come crashing to the floor.

Over the last four years, every time my husband and I have thought we could genuinely release one of our worries, we have gained a new one. The load lightens for a minute and then our hands are full again. We never know what hurdle is waiting for us around the next corner.

I am a keen recreational runner in my spare time, but this parenting race I’m running feels like a gruelling marathon that I’ve barely trained for. There’s only so many times you can ‘hit the wall’ before you feel like stopping.

It’s not always lonely – there are other people on the same track – but ultimately it’s your legs and willpower that must carry you over the line (if you can find it). Sharing your burdens might halve them in size, but you still feel the weight of them on your back, in your chest and on your mind.

To re-cap, our experience as Amelia’s parents has so far included a minor kidney defect identified in utero, developmental delays (gross motor, speech and language), deafness and the newly identified Autism Spectrum Disorder.

And I used to think running up Anderson Street next to the Melbourne Botanical Gardens was hard.

From birth to her second birthday, doctors and nurses planted seeds of worry in my mind about Amelia’s achingly slow progress to crawl (13 months) and then walk (21 months). Though more than fashionably late, she found her feet eventually and I let out a long, slow breath of relief. I remember the thought, ‘Now they’ll leave us alone to get on with living’.

When Amelia was two, we went to see her paediatrician for a final kidney check-up. I distinctly recall how great it felt when he gave her the all-clear – her kidneys had grown to their proper size and the minor defect had corrected itself naturally.

So, no more ultrasounds or trying (and failing) to get urine samples when she had a high temperature. Consider that baton passed.

In the same appointment, the paediatrician asked Amelia to come over and talk to him at his desk. He was holding a rabbit toy and he wanted her to tell him where the eyes, ears and mouth were.

At first she was happy to stand and look at the rabbit but she became confused by his questions and quickly ran away to the safety of the play corner.

That’s when he said to us, “Well, I don’t think she’s autistic, but there is something wrong with her”.

At the time, the suggestion of autism seemed absurd; this was a happy, engaged child who made eye contact and seemed to have great empathy for others. It was a part of our child’s future we were not at all ready to face.

But despite his sledgehammer approach, I knew the paediatrician was right. There was something wrong – Amelia was two and she could hardly speak – but I had no earthly idea what it might be.

I feared yet another developmental delay but he referred us to a speech pathologist and flagged the need to test her hearing (routine for speech and language assessments).

We’d handed off one baton and gained another, all in the space of five minutes. I think we deserved a rest stop or at least a drinks break or something.

After talking to a GP, I was convinced that Amelia had too much fluid in her ears from infections and would only need grommet surgery to free up her middle ear and allow the clear passage of sound.

This type of temporary hearing loss (conductive) can be as catastrophic for speech and language acquisition in infants as the more permanent kind. I grasped onto the idea a little too tightly and put all my hopes in it.

I thought we would go to the hospital and our problems would all be sorted out in a matter of months. Then, my family would be back on track.

Sadly this is not what was proven by the Ear, Nose and Throat Surgeon or the audiologists who tested Amelia. She had no fluid. Her hearing loss was discovered to be permanent and irreversible.

I’ve covered in detail how this diagnosis affected us and the decisions we made as a result of it. It’s just the hand she was dealt. We can help Amelia to carry this baton for as long as she needs, but in the end it’s her race to run.

But sometimes batons aren’t thrust upon you when are looking the other way. There are occasions when you run after them, chasing down the truth with hands outstretched.

For about a year I have been the one pushing us headlong towards the unveiling of another challenge – one more problem below the surface as yet unnamed.

You're gonna need a bigger boat

You’re gonna need a bigger boat

In this, I’ve been like Chief Brody in Jaws: I knew there was something else in the water even if sceptical Mayor-types kept telling me the beaches were safe. No really, send the children in with the shark because everything’s fine.

I had watched Amelia for a long time and I knew that deafness, even with her lack of speech, was not the reason behind her rage, social isolation, meltdowns, obsessiveness and curious anxieties.

We needed urgent help if we were going to get through the next stage of the race without the wear-and-tear of life’s pressures taking its toll.

It took us more than six months to get in to see the only paediatrician I thought might have the answers. She has vast professional experience working with both deaf and autistic children, so she seemed uniquely placed to guide us.

Her expertise and popularity made her nearly impossible to see, but our Early Intervention service wrote a letter on our behalf and we were fast-tracked to the top of the waiting-list for exceptional cases.

It was a killer letter but the picture it painted of Amelia’s struggles (and ours) was not easy to read, even if it was true.

I sat in the paediatrician’s office the first day and said, ‘Are we right to be here, do we need your help?’

I asked this because I still have this peculiar feeling – maybe it’s just plain old hope – that one day a doctor will look at me and say ‘What are you doing here, your child is fine’. It’s hard to explain how I can still think this way after the catalogue of trials we have faced, but I do.

But our new specialist just smiled at my question and said, ‘Oh yes, absolutely’.

We handed her our concerns and she took them from us and turned them into something useful, a diagnosis we can work with. The race isn’t over but at least now we know which way to go. Even if it’s towards more appointments and steep learning curves, we are closer to understanding Amelia now than ever before.

So we keep on running, from checkpoint to checkpoint, trying to refuel when we can and stay fit for the long haul. It’s not about the fastest time per kilometre and it’s never been about winning. It’s about stamina. And getting up to a decent pace each time you are passed another baton and making it. Just making it.

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4 thoughts on “Going the distance

  1. Wow Melinda, thanks for sharing. I came to your blog through Sarah Stow. My son Josh has spina bifida, and, in a fashion, there is a “manual” for that. Of course, all kids with sb present differently, but at least we knew from the beginning, what MAY come our way. Apart from the initial diagnosis at birth – no surprises. Your journey sounds so exhausting, and as a parent, it’s all exhausting anyway, but it’s extra hard to be extra vigilant, and have FUN in amongst all the therapies, appointments, chasing things up for your child. Hopefully your “motherguilt” has not increased! Good luck. Sue

    • Hi Sue, thanks so much for visiting and for your lovely comments. Thanks also for sharing a little bit about Josh here too. I know exactly what you mean about having a ‘manual’ – I feel that way about Amelia’s deafness these days; it’s like our safe zone where I now know what to expect. It’s the other stuff – the ASD – that contains so many surprises. I’m sure you can relate to that feeling of exhaustion but somehow you do manage to have fun and relax in the middle of all of the tests, otherwise how on earth would you cope?? I think I have my motherguilt under control at the moment! Best wishes to you too, Mel xx

  2. Melinda, I love your blog, you write beautifully & I find myself nodding in agreement when I read it. I have a beautiful 7 year old high functioning autistic girl but it has been a hell of a ride, and I like to run recreationally too. Thank you for your blog Gay

    Sent from my iPad

    • Gay, I love your comment so much! I’m always scared before I post a new story and when I saw your words I was really happy that it had found its mark with you. A runner and a mother who knows about the long race – so glad to have you here. Your thoughts are always welcome xx

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