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The Heartbreaking Frustration of Guessing What Your Child Is Trying to Tell You

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“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. Sometimes I’m clearer and say, “He can’t talk.” It can be an instant conversation stopper. Strangers’ eyes glaze over. Semi sympathetic smiles are offered. I pay for our shopping and make a sharp exit.

brody clapping

Having a nonverbal 4-year-old – and our non-verbal is the completely nonverbal kind –– is tough. As he gets older, Brody makes a lot more noises and a few sounds. We have “mum.” 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” (not always in context) and “please/thank you” (when it suits him, naturally). We’re beyond grateful for these signs, but the lack of communication, understanding and speech can be hard on the heart. Not to mention frustrating for everyone. Silence is not always golden. I should add we high five and fist pump, which is awesome.

Being nonverbal isn’t like “The Little Mermaid.” There isn’t always some magical solution. Take away your child’s verbal voice and you can imagine how much more complicated life gets. You long for things many parents take for granted. 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 her child. Is it his tummy? It must be a 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? It’s usually in the middle of the night too (why is that?).

Sometimes you’re right to be worried; something is amiss. You go to the hospital, explain your child’s story for the umpteenth time, reiterating that they can’t answer the doctor’ questions, and they find nothing is wrong. Then you feel like a
melodramatic parent. Other times, a few hours pass or the morning comes and it’s like nothing ever happened. He’s fine now.

Nonverbal parenting involves a shed load 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. After all, not being able to speak isn’t the same as not having anything to say. You can feel your child’s frustration at not being able to tell you what they want or what is 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 is 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.

The Mighty is asking its readers the following: What’s one secret about you or your loved one’s disability and/or disease that no one talks about? Check out our Submit a Story page for more about our submission guidelines.

Originally published: May 17, 2016
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