Say What?

Bette has Auditory Neuropathy Spectrum Disorder (ANSD). It's a retro cochlear hearing issue that's probably easiest to describe as a bit like hearing dyslexia. Like most spectrum disorders, it's not simple to 'measure' and thus to cater for.

While we can get some kind of idea what volumes/frequencies she hears at, in many ways that's meaningless, because ANSD is more about the way she processes and receives sound from her nerve to her brain. Add to that, that ANSD is fluid (so she might have good and bad hearing days) and tests are of little real value. Sure, she can hear 'this' today; but it makes no sense at all to her because it's so distorted. Or, while she doesn't seem to be able to hear something because the nerves being monitored aren't behaving in a typical way, she could be hearing it perfectly. Essentially, until she can talk (or not) we wont really know where we stand with it.

Thus far, it's present only in one ear and her other is classed 'normal' - so some of what she hears at least should be making sense. Whether that can and will change isn't clear. It depends a little bit on what caused the problem in the first place. Again, that's almost impossible to determine. I could have had a particular illness during pregnancy, even unknowingly. It could just be sheer luck. Genetics. A brain tumour pushing on the nerve. The antibiotics she was given at birth due to being early - which are known to cause hearing issues. Rarely of course, but then, ANSD is fairly rare too. Only one in 10,000 babies born each year show some sign of it.

Until now, while we've had specialist hearing teachers visit, Hearing Loss Australia in to support us, regular paediatric, speech pathologist and ENT visits at Brisbane's leading children's hospital, and best of all, access to the most amazing special needs playgroup as part of the Early Childhood Development Programme, it's been fairly easy to ignore Betts has hearing loss.

No one expects her to say much as a baby. To really understand what they're saying. To locate the 'ball' or the 'teddy' or the 'book' they encourage her to. But at 11 months, that's beginning to change. While every child is different and she's not especially 'behind' yet, her last speech appointment showed that there are signs that her language development and those precursors to it are not where they would typically be for a child of her age.

And at least part of it is my fault.

Clearly, that's not what the speech pathologist said. But as her mum I know what I'm doing differently with kid two...

I know I'm not asking her, as I change her nappy, where her nose is and pointing to mine; I'm yelling at her brother to get down from the top of the guitar stand before he cracks his head open like some kind of rock Humpty Dumpty.

I know I'm not reading books to her and making the sounds of the animals on the pages as I go; I'm negotiating with Abe about which one of 'his' books (because everything is his; even if it's hers) she's allowed to chew on while I make lunch.

I know I'm not taking her on long walks in the pram talking about the stuff we see as we go (much to Memphis's dismay); I'm wrestling her into a car seat mid nap because we have to get the eldest kid to swimming/a playdate/out the house before I top him.

These are all pretty standard second child problems I know. And ones that I'm starting to see as the eldest child, often make those who come after us so relaxed, adaptable, tolerant and good humoured. But they're ones that for Bette are especially problematic and are hindering her progress almost as much as her dud ear.

Add to that, she rarely gets to hear normal speech in a quiet environment because mother-ing Abe brings out the shouter and the swearer in me and he's always in the background making truck noises louder than an actual truck would be...

And what you get are less than ideal conditions for learning language. Especially for a child with hearing problems.

Still, after more than a decade in classrooms, there's nothing I know better than how to critique myself and overhaul my approach. So, for the last week, all the games I've not played with my daughter have been added into our daily activities and I'm making a conscious effort to really give her a bit more attention and focus.

Instead of spending the alone time I get with Bette (while Abe takes a shit or throws toys around his room in a fit of anger because I've refused to put the telly on) tidying up, scrubbing porridge from the high chair or looking on Gumtree for crates that could house a three year old; I've been actually talking to her. Repeating things, making different sounds, using a bit of Auslan and encouraging her to have a go. In just a week, she's already added in the 'ga' sound to her (very limited) repertoire, started saying dad, following the instruction to 'shake' a rattle and signing for puppy.

Which just goes to show, that one of my children listens to me. In fact, I'm wondering if they've picked up a hearing issue with the right child, because the other one does a waaaay better job of seeming to hear nothing I say than Betts does...

#health #family #ansd #specialneeds