Ella, Special needs parenting

The Deafening Silence of a Non-Vocal Child

There’s so many reasons having a non vocal child is tough…

There’s the unbridled fear that if someone was bullying her at school, she couldn’t tell me.  If the other kids are being mean to her, or if the teachers are overlooking her I may never know.  Being hyper aware of the risks is her only protection.  Statistically, a child like Ella, with mental and physical disabilities are 4.6 times more at risk of abuse.  Just let that sink in.  Our most vulnerable, are among the most at risk.  It’s statistics like this that make me hate the world we live in, make me want to lock Ella away from the world.
I have to put my complete trust in her carers and aids knowing that if she’s mistreated, I only have my intuition to trust.  To trust that I know her well enough to know, through change of behaviour, or some other indicator, if something was going on.
And also the fear that if the worst was to happen, if she was abused in some way and I was 100% sure, there may never be proof.   The fear every time I meet a new carer, a new teacher, a new therapist, is this person going to look after her? Does this person have her best interests at heart?  Will this person treat her as well as they should?

And then there’s the little things.
The utter silence
Never hearing her say the words “I love you mum”
Not knowing what’s on her mind
Not knowing what she even likes
Never really knowing what she’s thinking
Not understanding her frustrations

I’ll never forget when Ella started at mainstream kindergarten, and we walked out with all the other kids and their parents, the excited chatter all around us as kids breathlessly described their first day, noise surrounding us, and consuming me, as I headed to sit in the car and read about Ella’s day, as written by her aid in the communication book.
There was 4 sentences.
It was never as bad as that first week, I got used to it.
Even now walking home from the bus stop, either in complete silence, or with me asking unanswered questions.
What did you do at school today?
Did you do numbers or colours?
Did you have fun?
Do you have friends to play with?
Most of these are the same questions and the same generic nod of the head from Ella every afternoon.

I spend months planning what to get her for Christmas or her birthday because she can’t tell me what she wants.  I have to just guess, and sometimes it’s a miss, and sometimes it’s a hit.  I bought her a little drum kit for her birthday last year, I was really excited thinking she’d love it – She couldn’t care less about it, and yet, her new captain america shirt, best thing ever!  Not to mention the semi awkwardness I feel when other people ask me what she’s ‘into’ – and I don’t want to say I don’t know, like I don’t know my own child.  so I give it my best guess and they get her presents – usually either too advanced or too ‘babyish’ for her.  But I’m so grateful for the effort.
Her birthday cakes used to be dads department, but we’d spend weeks planning what to make, what she’d recognise. Now its up to me and I have no clue.
Last year I made a pig, because she ‘snorts’ when she sees one. This year, my beautiful cousin is making her a lion, because she ‘roars’ when she sees one.  Again, she can’t tell me what her favourite animal is, or if she even has one.
For a while everything she wore, every cup and every plate were all pink because that’s the colour we were encouraging her to vocalise.  Then, it was purple and at the moment its ‘green’.   (which works well for her birthday, lion cake, green decos = jungle theme!)  I can’t tell if she actually likes those colours or those animals, or it’s just because that’s what we’ve been working on.  Her birthday is getting closer and I’m already nervous she wont like it, wont understand or that she’ll freak out.

The awkward, questioning looks I get from strangers after they ask her name, or how old she is, and Ella doesn’t answer.  Waiting for me to answer for her while I wait and at least give Ella a chance, like a weird waiting game.  generally followed by the question
‘what’s wrong with her’
(Or more recently, a straightforward “Autism or cystic fibrosis?” – well, neither but thanks for asking!)
And the advice! oh, the advise we get makes me laugh! What do they expect? That I haven’t tried it all? That I haven’t got an actual, amazing, qualified speech pathologist to help? That their 5 minute supermarket assessment has more bearing than anyone else?
“why thank you random lady at woolies. I never thought to try reading aloud to her to get her to talk! All this time I’d been reading to her in my head!” *insert massive eye-roll here*  [yes, this was actual advice from a complete stranger]

Ella’s silence is made abundantly clear when the neighbours girls come around after school, both Ella’s age.  The noise is just amazing!  The endless chatter of stuff.  A wobbly tooth was at least a 5 minute conversation – we hear all about her sore toe, her day at school, her new shoes, that it’s nearly her birthday, that she wants a pet rabbit, her favourite colour, character, book.  The mindless chatter just goes on and on!
I listen to every word fascinated as the younger one talks at Ella, and to me.
My heart breaking that little bit more to know that Ella doesn’t really care what’s being said.

After they leave the silence is deafening.

I know we’ve come a long way with Ella’s communication.  I generally try to look on the bright side.  Eternal optimism.
Ella knows some signs, can vocalise a couple of words. She can use her speech device to for basic wants and needs (mainly food) But after seeing at least some steady improvement for years, we seem to have hit a wall.
Part of special needs parenting is knowing when to ‘give up’ and re-adjust your expectations.  This week I had 2 of those depressing moments.  We’ve paused toilet training, after 5 months of not wearing nappies during the day, countless bags of poo, endless amounts of washing and several accidents every day it’s just not happening, so to save everyone’s sanity we’re back in nappies full-time

And my second realisation this week, the one that almost broke me, is the realisation that Ella will probably never ‘chat’.
And for me, it’s a hard pill to swallow.

I’d love to be able to have those nonsense conversations with Ella that dad used to have with me.  He had an answer for everything, and most of them were complete fabrications, But I just thought he had all the answers.
To tell dumb jokes, to have her roll her eyes at me, and say ‘Jeeze mum, you’re so lame!’
To be able to give those stupid answers to stupid questions.
To hear inane chatter about her day, for her to tell me about her friends, her hopes, her dreams.  Just for her to tell me how she feels, or what she likes, Her favourite animal, her favourite colour, just something. 

I make jokes about how nice it is that she’s quiet, I laugh about not worrying about her telling Joel if I have a sneaky wine while out for lunch, and joke about not needing to watch my swearing around her.  It’s my way of coping with it, and to curb the pity I so often receive.

But really, it’s the little things I miss, The little things that break my heart.

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