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Th first word. One of life’s big milestones that we expect to happen in early childhood. As an enlightened parent of a child who has only a few words, and is essentially non-verbal, I look at people in the non-disabled world and realise that they don’t know. They don’t know that if it turns out that your child is not going to be using words to communicate, that there are countless other ways in which they can get their needs met, build relationships and tell you they love you. 

We are conditioned to expect speech. So much so, that I have recently heard the term pre-verbal being used a lot to describe children that are not talking when expected to. If this works for you then that’s brilliant, I imagine in a situation where you may still be expecting a child to use words to communicate, that this would feel right.

For me, the term pre-verbal is heavy with expectation.

. Life has taught me that expecting certain things isn’t always helpful, and working on living in the moment makes for a steadier path. Our little girl did begin to talk, seizures started and her speech slowed, she got more words then regressed and stopped talking completely for 6 months. She slowly regained some words only to lose it all again for a year.

She now has a beautifully curated collection of gorgeous words; some ‘off the shelf’; others, bespoke, artisanal creations of her own. Those who invest the time to get to know her know exactly what they mean. We were devastated both times when her words went, and we will be if they go again. But we have learnt that she is still there, sometimes under clouds of seizure activity, but she’s still there.

Our girl communicates with us uniquely, and beautifully

We know what she wants, we know how she feels. We know when she is excited, and we know when she is frustrated. She’ll bring us her shoes and our car keys to let us know when she wants to go out. Anyone that has received a fierce little hug from our child knows how magic it is. It gives me a high that no words ever could.   

I wish I could reassure any parents who feel devastated after being told that their child will be unlikely to talk, that it will be so much more than ok. The only way to discover this though, is by living it and, like the buds breaking this spring, beauty and magic will appear, often even on the days that feel darkest.  

Firefly Blog

Real life stories, issues and experiences of day to day life by special needs parents and
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Sharon F

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I'm Sharon, I have a daughter with epilepsy and a severe learning disability. I blog about our livewire life.

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