Raising Kids With Special Needs: I Speak On Her Behalf

Sarah Meyers by Sarah Meyers Additional Needs

Sarah Meyers

Sarah Meyers

I'm the mum of two beautiful, vibrant, opinionated girls, one of whom has a complex, life-limiting condition. Living in Australia (a place I'd neve...

Despite our hopes that she would be a tomboy, she declared very early on that she only wanted to wear pink – skirts and dresses only, thank you very much – and prefers ballet to playing sport.

Expectations that she’d be a bookworm have been worn away by the fact she prefers drawing to curling up with a book.

All of these opinions and preferences are part of who she is, and remind us that although we gave her life, she is very much her own person.

And it has been a (somewhat unexpected) joy to watch her grow and develop into that person.

My younger daughter, Miss Z, also has strong opinions and is not shy about sharing them.

However, because she is non-verbal, her opinions are, by necessity, translated by others.

Although we are working on communication, at the moment she is really only able to tell us if she likes something (by being happy, smiling or singing) or she dislikes it (by becoming grumpy, crying, and

scratching her ears).

Unfortunately, it isn’t always clear what she likes or dislikes.

Is she smiling because she likes the music or because she’s happy to be home from school?

Is she crying because she’s bored or because she is in pain or is it that she just doesn’t like what’s on television?

Even her father and I – the two people who know her best – often disagree about what is making her unhappy.

For example, Miss Z hates the hospital. She gets cranky the moment we set foot in the building – even if we’re only there to pick up supplies or a prescription.

Logically, I assume that she hates the hospital because she is reminded of all the times she has had painful procedures there, or been unwell, or been poked and prodded by doctors.

But does that mean that she is scared of the hospital? Or is she angry that I’ve taken her there?

Or perhaps it has nothing at all to do with memories – maybe she thinks the air conditioning is set too high or she doesn’t like the noise or gets bored and frustrated with all the waiting.

I often hear parents of non-verbal children say things like, “I am her voice,” or, “I know what she’s thinking”. These statements make me uneasy.

While I am Miss Z’s voice, in that I am her mother and her advocate, I can’t speak for her, only on her behalf.

And this is because, quite honestly, I don’t know what she is thinking.

I can guess what she is thinking, and sometimes she shows me very clearly what she is thinking, but I don’t have a psychic connection to her.

But oh, how I wish we were psychically linked.

I really want to understand how she views her life.

I wish I could know how much she comprehends of the world around her.

I wish I could find out the reason she seems grumpy so much of the time – is it frustration, boredom or pain? – and what I can do to help.

And I even wish I could understand why she likes some cartoons and not others or why she loves music by ABBA as much as she does (she really, really loves them).

I’ve always read with interest things written by people who have some of the same issues as Miss Z, such as online posts about “how it feels to have a seizure” or blogs written by people with disabilities.

It helps me to understand some of what she might be feeling.

But at the end of the day, no one knows how it feels to be Miss Z or what goes on in her head - except her.

During a recent communication workshop, a speech therapist told the story of a non-verbal young man. For years, his mother had taken him to a riding for the disabled programme.

She was convinced that he enjoyed and benefitted from the experience, so turned her schedule upside down to make sure he attended every week. Years went by.

Then, one day the young man was given access to a communication device.

What were his first words?

“I hate horses, they stink!”

I will keep working to communicate with and better understand Miss Z.

It is something that I will never stop doing.

I just hope that I don’t someday learn that she actually hates ABBA!


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