One of the most exhilarating and scary things about being a parent is watching your child grow and begin to understand more and more about who they are and how they fit (or don’t) into the world around them.
In the beginning, the concept of ‘who they are’ is largely defined by parental opinion and self-indulgent projections such as ‘oh, she has my eyes’, or ‘she’s strong-willed like her Mum’. She is in the world but she’s not her own person yet.
But at some stage, that child will break the shackles of the prescriptive parental narrator and strike out on their own path, discovering ‘who they really are’ on their own terms.
For us, that process is made even more complex by the fact that aside from personality traits, quirks and individual preferences, our five year old Amelia’s life has had some surprise storylines that she is only starting to uncover for herself.
She is deaf. She is also on the autism spectrum. These are weighty facts about our daughter that have taken us years to deal with and understand. We’re far from reconciled to their impact on her life and ours.
For Amelia, the journey to self-discovery is very much at its genesis. About her deafness, she knows that without her hearing aids she can’t hear music, television or clear voices.
In this, she has made an important connection between her hearing loss and the technology she uses to access sound and the world around her.
Then a few months ago, she referred to a teacher at her school as ‘deaf’ in speech and sign but when I gently pressed her on what the word meant, she was unable to explain.
No doubt at Amelia’s school for the deaf she sees, hears and signs the word deaf quite a lot, but it has understandably remained an abstract concept for her. She uses it as a label for people the way she might say “that man is old”, or “my friend is cheeky”.
I hold my breath a bit during these interactions with her because each time I’m waiting to see if the penny has truly dropped. You know, the day she finally asks me about her deafness, not just some vague, remote concept.
I’m also hyper-conscious about not forcing the realisation onto her, before she is ready. It’s one thing to learn that your daughter is deaf and to try and assimilate that word and its meaning into your own sense of their identity.
But this part of her story is not mine to tell or explain. It’s not my right to telegraph such an important fact about who she is. For once, I have to just shut up, listen and wait until Amelia works it out for herself.
Like yesterday, when she came home from school and spotted a picture of a toddler with hearing aids in a newsletter sitting on the kitchen bench. The conversation went like this:
“Mum, the baby has hearing aids like me…”
“Yes, he does have hearing aids”, I said.
“Mmmm”, Amelia pondered for a second and then said and signed, “I’m deaf”.
As usual, I held my breath for a few seconds and then said in a neutral tone, “Are you deaf? Show me the sign again Amelia?”
She signed ‘deaf’ once more. I softly asked, “And what is deaf, Amelia?” She didn’t say.
Then I asked, “Who else is deaf, Amelia?” to test her understanding and she began to list the names of her classmates, all of whom are deaf.
And then quick as a flash she broke the spell that seemed to hang over our chat for a minute and ran off in pursuit of another game and the brief moment of self-realisation came to an end. I exhaled a long, slow breath and smiled.
I’m not sure how much closer she is to understanding what it means to be deaf but it felt like a big deal to me, the first time my girl said that she was deaf. It is no longer an abstract concept that lives outside of her experience or a random label applied to somebody else.
Amelia has begun to comprehend more about who she is, only part of which is being a deaf child. I am sure that once the penny really drops there will be stages when she has different feelings about what deafness (and ASD) mean to her identity. To her sense of self.
But whether it’s a heads or tails proposition, my only job is to hold her hand as I always have and listen and answer her questions with absolute honesty. Like when she asks me if I’m deaf and I have to say no even though I secretly wish I could lie and pretend we are the same.