I’m not sure precisely when I started worrying about the social impact of Amelia’s deafness. Maybe it was the day I read too much online about how isolating, confusing and downright exhausting social experiences can be for deaf kids, always up against it in the hearing world.
Daunting words in bold-face leapt out at me from the computer screen. Sharp-edged ones like, depression. Anxiety. Paranoia. And anger. That one always seemed to be in italics for maximum impact.
It’s not a doom-sayer’s checklist – ‘nasty things coming your way when you’re raising a deaf child’ – but it is a set of emotional risk factors that can’t be taken lightly.
My aim as a parent is to hopefully reduce their power to hurt my daughter on her path between two contrasting worlds – deaf and hearing.
Melinda Hildebrandt speaks candidly to Mia Freedman about parenting her daughter who has autism and is deaf. (Post continues below.)
Amelia is not quite six years old and we have only known about her deafness for a tick under four years. It’s not a long time in the grand scheme of things. But already I see just how easy it is for her as a deaf child to be left out or excluded by virtue of her difference to other people.
Let’s take birthday parties as a classic example. Oh birthday parties, how I hate thee with a passion. It’s unavoidable, but kid’s parties are the worst kind of place for a deaf child to feel a part of the natural order of things.
Because they’re too loud, too chaotic, too MAD for Amelia to make sense of what is going on around her. Sure, she wears hearing aids but they are next to useless in the face of such an intense racket. Those little devices can sift the wheat sounds from the cacophonous chaff and so she is mostly lost.
I watch her making her way with excited bewilderment around these parties and I feel like throwing a huge, warm blanket over her. Underneath its soft layers, background noise would be reduced to a gentle hum that would not compete with voices speaking clearly in merry conversation.
In either context Amelia is alone. ‘Alone’ in the noisy crowd, or by herself beneath the blanket I throw over her every day when we come home and I can set things up exactly as she needs them to be.
Amelia and her mum, Melinda Hildebrandt. Image: supplied.
It is because of this potential for loneliness that I love being able to send her to a school for deaf children.
When I visit Amelia there and see her with her classroom comrades, it's sometimes hard to see where she starts and they finish.
These six classmates have been together for almost two years now and they are incredibly close. Whether they speak or sign to each other there is something almost organic about how they interact.
It’s born of the time they’ve spent bonding as friends but it is also the result of their shared identities as bilingual deaf kids. Communication between these children operates on a plane of mutual instinct and understanding; touching or tapping to gain attention, waving to be seen or heard, using gesture to add meaning: all form the basis of a code that marks them out as members of a club, a culture.
Within this rarefied environment, Amelia and the knowledge required to be with her and make her feel like an insider are known to everyone. I never need to worry about a scary thing like social isolation.
Seeing how crucial communication is to Amelia and her sense of belonging, it is all the more important for us, her hearing family, to be diligent about always involving her in social activities and conversations.
When we have friends over to visit, she becomes highly agitated and manic when there is a lot of conversation happening across her, between adults engaged with each other rather than with her.
Amelia yells at us over and over again to explain, “What are you talking about? What are you talking about?!” She throws her body into the mix too, placing herself in our eye line so we don’t ever forget she’s there waiting to be included.
Of course she needs to learn when to wait her turn (good luck) and it is less than socially optimal for us to have to keep stopping and explaining each story to her, but it is her right to be factored into the cut-and- thrust of social chatter.
She so desperately wants to be included in social situations. Image: supplied.
It is much harder for Amelia to find her way in larger social situations where competing sounds blend into a baffling wall of confusing sounds and she sort of disappears under the radar, unable to get her bearings without a hearing compass to guide her.
This is where our greatest challenge lies, in reminding other people to take a minute to stop and talk to her, lean down close to her face so she can see their lips when they are speaking, use their hands to make the meaning of their words clearer. To see her and invite her in.
In reality, it doesn’t take much to make a child like Amelia feel involved AND accepted. I see this every time we spend time with our closest friends, GH and NB and their boys. It’s so uncomplicated, the way they ask Amelia how to sign certain words, to share her second language with them.
I watch Amelia’s eyes light up with pleasure as she shows them how to sign ‘turtle’ or ‘hippo’ in Auslan. They sign the words back to her and, hey presto, she’s in their world and they are in hers.
We recently went on holiday together and stayed in the same cottage. At night time as we were getting our kids ready for bed, there was always some story-time happening in the lounge room.
Unprompted on the first night, Amelia grabbed a book and sat next to our friends' youngest boy. She opened the first page and started telling him the story completely in Auslan, with her voice 'switched off'. I've seen her do that with anyone outside of her family or deaf friends before.
And he loved it, watching her hands describe the flow of river water or the fire expelled by a scary dragon. Amelia repeated this routine each night, and I could tell she felt proud to be like a big sister to her sweet little friend, able to teach him something new. It is lonely to be an only child too.
Sometimes I think it’s children who know best how to cut through all of this stuff and find some valuable common ground.
Like the other day when Amelia was with her dad in the park and she ran over to ‘talk’ to some older boys, aged maybe nine or ten.
Her speech wasn’t really up to an in-depth gossip session but she had a mighty crack anyway. In these situations she tends to make a lot of noise, such as loud bird-screeching sounds and flaps her arms around, in her often-strange attempt to say ‘hi’ and make friends.
One boy saw Amelia’s hearing aids and asked his dad if she was deaf, which he confirmed. "Oh, we thought she was disabled or something but then we saw her hearing aids.”
The boys then welcomed Amelia into their group and hung out with her. They had zero anxiety about approaching her in the ‘wrong’ way. They got the hard questions out of the way early and then all there was left to do was play.
And it wasn’t that they were tolerating her presence, the boys actively shared their games and conversations with Amelia. They let her hold their hands and there was mutual enjoyment of the time spent together in a small park in the suburbs.
I know that this was a special event because of the way my husband told it to me. He spoke about that main boy reverentially, because for about fifteen minutes he took our daughter in his world and any present worries about her just melted away.
Her isolation, and my husband’s, were delayed for an afternoon, halted by the friendliness of those boys and their easy acceptance of Amelia.
And so was mine. Social isolation isn’t just a huge risk factor for deaf children, rather it applies to their parents too. Because for every child or adult who ‘gets it’, there are so many others who don’t and that is an alienating fact indeed.
Thankfully at the moment, Amelia isn’t really cognisant of the people who accidentally ignore her, nor does she seem to feel the exclusionary effects of situations in which she is a natural outsider. The big job for us as she grows is to try and minimise the impact of this kind of isolation on her generous little heart.
All we can hope for is that there are enough loving family members, cool boys in the park and sweet little friends who enjoy their story time in Auslan to protect her from the feelings of loneliness when they come. And try though we might to stop them, they will come.
This is an extract from the memoir, Amelia and Me. It is available on Amazon in paperback or ebook, here.
To hear Mia Freedman's fascinating chat with Melinda Hildebrandt, catch the latest episode of No Filter.