Parent or advocate?

You are the best advocate for your child.

You are the expert on your child.

If I'm going to box, I want to be directed by Scorsese

If I’m going to box, I want to be directed by Scorsese

If I’ve heard these weighted expressions once, I’ve heard them a thousand times over the last two years. Sometimes they are like straitjackets, pinning my arms to my sides, suffocating me. No matter how hard I struggle against the bonds, they will not break.

When I am not so angry and more accepting of my job as an externally appointed parent-advocate-expert (a triple threat, if you will), I find I can walk the line and just cop to the fact that I have to keep my eyes peeled and my sleeves rolled up. You know, all of the time.

Because there’s no choice, between one role and the other, not at my end of the parenting game. I can’t just say “yeah, you know, today I don’t feel like being an advocate for you Amelia, I kind of just want to run away to the movies and hide”.

My responsibilities would find me there anyway, up to my shiny eyeballs in popcorn and lust for Mads Mikkelsen.

Generous people tell me I’m doing an amazing job at it, because I’m tough, because I have fought so hard for my daughter and, I guess, because I’m still standing. This is reassuring to hear because I don’t really know what the hell I’m doing most of the time.

But in all honesty, I didn’t want to have to be a pugilistic parent/advocate. Not at all. It doesn’t really come naturally to me, this so-called toughness. I just wanted to be a simple parent, an ordinary mother.

When I was going through IVF treatment, I didn’t dream of much more than the birth of a healthy child. My hopeful mind dared to stray to thoughts of long, slow walks with the child of my future – I would hold her little hand and whisper secrets about the world into her ear.

Now I want to laugh in the face of that woman, who thought that the realisation of that dream was the one battle she had left to fight. That poor woman who was so deluded she put her boxing gloves away and let her guard down. I do not recognise her in myself anymore.

But resistance is futile when you become the mother of a child who needs so much more than nappies and lunches and lullabies. If you don’t take on the mantle of advocate and close the gap between your child’s challenges and other people’s understanding of them, then they will fall into a crevasse the size of Western Australia.

So get over yourself and get on with it. That’s my personal mantra. It’s not very poetic as mantras go, but it’ll do for what I have to get done.

If you are wondering how advocacy works in my situation, as the mother of a deaf child with additional needs, well here’s a list of some of the essential gap-closing things I tell people who interact with Amelia:

  1. Amelia has a moderate-severe/profound hearing loss which means that without aids she can only hear fragments of words or really loud noises like a vacuum cleaner, a motorbike or a stereo cranked up to 11. Here’s a handout from Australian Hearing which perfectly illustrates this information (I gave this document to lots of people in the early days and still carry a worn copy in my bag),
  2. With hearing aids, in a quiet room, when you are close by, facing her and have her full attention, Amelia can understand you very well,
  3. If you want to get Amelia’s attention, you can touch her on the shoulder, tap the table in front of her or stamp your foot nearby (I also have fact sheets about how to communicate non-verbally with a deaf child which I have distributed when necessary),
  4. Please make sure Amelia can see your face when you are trying to talk to her because she relies on the cues she reads in your expression and lips to follow what you are saying; kneel down at her eye level and make sure you don’t cover your mouth,
  5. If Amelia is not wearing her aids and you are talking to her back or from across the room, SHE CANNOT HEAR YOU,
  6. Well-lit rooms are the best for maximising how much of your facial expression and lip movement Amelia can see when you are speaking to her,
  7. Background noise, like booming televisions or loud music will radically reduce how much Amelia can hear (her hearing aids are powerful but with competing sounds, they will not be able to pick out and make sense of softer conversational tones from the wall of noise). That kind of noisy room is an acoustic mess for Amelia, so please turn the sound down or off,
  8. Amelia is a visual thinker and learner, so even if you don’t know any sign language, lots of gestures to communicate with her are welcome,
  9. Amelia’s hearing loss was diagnosed very late, so her speech and language is delayed. But she can understand a lot of what you are saying, so please don’t stop talking to Amelia just because she can’t necessarily answer your questions or speak like other children her age,
  10. Amelia is highly fearful of certain situations, such as doctor’s examinations or tests, so please be understanding if her behaviour seems manic and a bit naughty – it is only because she is afraid and stressed.
Amelia and her Nan, up close and personal

Amelia and her Nan, up close and personal

I figure if you know these things about what it’s like to be Amelia and cope with a significant hearing loss in environments that are often set up to think of her needs last, then maybe she’ll have a fighting chance to access the world on a more level playing field.

But you have to meet her where she is, not the other way around.

You can never assume that people will know anything about deafness, its complexity and how it affects an individual child, either through experience or instinct. Even if you meet someone who knows a little bit about some of the issues involved, they won’t have any idea what they mean in Amelia’s case.

That’s precisely why it’s my job to pave the way and educate. I’ve had to learn so much myself, about audiograms, hearing loss, hearing aids, sign language, and cochlear implants, not to mention how my daughter’s life is impacted by her challenges and what strategies might serve to help her.

In certain situations or with particular people I find I have to repeat myself many times. I’m sure that can be annoying, but I can’t afford to care.

Other times I grow weary and give up after restating the same message in different ways (gently, incidentally, directly) when it just isn’t being heard and taken on board.

In those moments I feel like I am failing Amelia by not pushing past my own emotions and hammering home these messages more forcefully.

I’m no expert on Amelia – she defies being pinned down or defined – but I know that when we go to have her hearing tested every eight weeks, she will only tolerate soft headphones (not the tube phones inserted into her moulds or the bone conduction ones with their hard edges) and we have to warm up with the marble game first (try it, it’s tremendous fun).

Amelia and me - we're in this together

Amelia and me – we’re in this together

If someone forgets these little details, I’m there to remind them and I always ask to wear my own pair of headphones because I know this makes Amelia feel like we’re in it together. And we are.

We used to have inexperienced graduates assisting our main audiologist with the testing. By the time they had worked out the equipment and how to set up the games, Amelia was half-way out the door.

After a few conversations with the clinic, we now have two senior audiologists with us every time a test is conducted. It’s harder to find a time-slot, but getting regular and accurate hearing test results is too important to settle for anything less than the best.

At the moment, Amelia attends both a mainstream kindergarten (one day per week) and a deaf kindergarten (two days). At the latter, I can for the most part take my advocate’s hat off, because her teachers understand deafness (or are deaf) and so I don’t have to explain anything about the big ticket items on our list.

I know some things get missed at her other kinder, based at a local childcare centre, like hearing aids not turned back on after a nap, music played too loud or conversations held around Amelia rather than with her. But by and large the people there have been amazingly inclusive of my girl and her needs.

More than one child care worker over the last two years has paid their own way through Auslan courses and worked with our Early Intervention service so that Amelia can make the most out of her time with them. The staff took the education process to another level on their own initiative and I truly love them for that.

It is also a nice surprise when I come into contact with a person or organisation, equipped with my advocate’s bag of explanations, and find that they are already primed to meet Amelia where she is.

Exhibit A: I called a local youth theatre the other day to talk about a Drama Play program for three-five year olds. Our paediatrician had told me that they often work with deaf kids so I should see what they might have for my ‘artsy’ Amelia.

I was quickly transferred to their Access Officer (already a promising start) and told her about Amelia and that we wanted to try the program in term three. She was so positive and excited about welcoming Amelia into the program, which she said would be perfect for her.

She said, “Does she use an FM?”

“Um, yes, she does sometimes”.

“Great, bring it with you, we use them all the time. I’ll set up a meeting with our artistic director running the program so you can come and in and tell us all about your little girl. If we need to organise for an interpreter or any extra support we can do that at any time”.

Me, “………………………..

I didn’t need to say anything else because she had closed the gap of understanding before I needed to leap in and unfurl my list of ‘stuff’ about Amelia.

This type of interaction is rare but when it happens you have to sit back and appreciate how liberating it is when someone just ‘gets it’ and you don’t have to endlessly explain. I’m told it’s not my default setting, but I really do like shutting up when others cover the bases ahead of me.

So for a few blissful minutes on the phone, I was just a mother who was neither an advocate nor an expert, and in my experience those moments are worth their weight in gold.

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