“What’s your name?”
“Oh – he’s not a talker.”
Forced smile. Remind myself – they are just being kind.
That’s usually my standard response.
Sometimes it’s misinterpreted – fair enough really, I doubt they’d want the whole story, nor can I be bothered to tell it – and followed by another question. Until I am clearer and say he can’t talk. Other times it’s an instant conversation stopper. Stranger’s eyes glaze over. Semi sympathetic smile offered as they regret asking. I pay for our shopping as quickly as possible (it’s almost always at a supermarket) and make a sharp exit.
Having a non-verbal 4 year old – and our non-verbal is the completely non-verbal kind – is tough. As he gets older, Brody makes a lot more noises (great for attracting people that like a good old stare when we’re out and about) and a few sounds. We have “mum” (sometimes I do think he may mean me), “ma,” “ba,” “la,” and most recently “da.”
The past year has brought us some wonderful Makaton signing – we wave and sign “more” (funnily enough food was the motivator for that one), “duck,” “bird,” “yes” (unfortunately not always in context) and “please” and “thank you” (when it suits him – naturally). We are beyond grateful for these signs, but the lack of communication, understanding and speech is really hard on the heart. Not to mention frustrating for everyone.
Silence is not always golden.
I should add that we high five and fist pump, which is awesome. Not such a good look though when your child doesn’t understand that his extended fist isn’t automatically recognized as the pump variety to strangers. Yep, that happens.
Being non-verbal isn’t like “The Little Mermaid.” There isn’t always some magical solution. Take away your child’s voice and you can imagine how much more complicated life gets. Lots of things that parents take for granted are longed for. “I love you’s,” birthday and Christmas lists, endless questions and conversations about favorite things.
When your child is unwell, the whole situation is magnified. By a kazillion. Oh man, people have no idea. Your child is moaning and upset and the guess work is suddenly beyond overwhelming. You feel like an instant failure. The. Worst. Mum. Ever. Because who doesn’t know what’s wrong with their child. Is it his tummy? It must be tummy ache. Maybe it’s a sore throat? Can we see any marks? Has he hurt himself?
Then the panic sets in. Do I need to call an ambulance? Should we be packing a hospital bag and calling the Children’s Ward? What if this is something serious? Is a seizure coming? Of course, it’s usually in the middle of the night too (why is that?).
Sometimes, you’re right to be worried and something is amiss. Other times, you go to the hospital – explain for the umpteenth time your child’s story, reiterating that they can’t answer the Doctor’s questions – and they find nothing is wrong. Then you feel like a melodramatic parent. Then there are the times when a few hours pass or the morning comes and it’s like nothing ever happened. He is fine now.
Non-verbal parenting involves a ton of guess work, a whole heap of patience and endless boxes of tissues. You long for that first word, to hear your child’s voice and to have a conversation.
Not being able to speak isn’t the same as not having anything to say after all. You can feel your child’s frustration at not being able to tell you what they want or what’s wrong. It’s heartbreaking.
Like every mum – although it’s not always easy – I try to be positive. Brody speaks in so many silent ways. His actions speak volumes. When he’s happy, he smiles and claps. His laughter is electric and can light up the darkest room.
Silence isn’t always empty. Some say it can be full of answers and speak when words can’t.
Oh what I would give for some words and an answer back though…
I fell into blogging through writing about a nappy (diaper) petition I started in January 2016.
I have two children, Brody (4) and Sydney (1). Brody has no primary diagnosis for his disabilities, despite lots of genetic testing, which means he has a syndrome without a name. He has Global Development Delay, Epilepsy, Hypotonia and Hypermobility Syndrome. He is brilliant.
I am a big believer in campaigning for disabled rights and access for all. It’s unfortunate that we have to shout in order to try and be heard sometimes, but we all have the ability to change things for the better.
Latest posts by Laura Rutherford (see all)
- Being a Helicopter Parent Because You Have No Choice - October 12, 2016
- Comparing My Child to Others Doesn’t Help Anybody - August 18, 2016
- Being Non-Verbal Isn’t Like The Little Mermaid - August 2, 2016