Guest post by Amanda, who is coordinator of Scope’s Face 2 Face befriending service in Brighton. Amanda’s daughter Livvy (below) has very complex impairments and does not communicate verbally. Amanda has shared her story as part of our 100 days, 100 stories campaign.
One of the first questions people ask me when they meet my amazing 14-year-old daughter Livvy is, “Does she talk?”
Well, Livvy has no spoken language – she is ‘preverbal’. But, as we have learnt, there’s more to communication than the words we say.
I remember in the early days being so desperate to hear her voice. She babbled on cue at six months, but after an ear infection at eight months, she became eerily silent.
At first, we suspected her lack of communication was down to glue ear and that she couldn’t hear us, but after two grommet operations the words still didn’t come.
Livvy wasn’t playing social communication games such as peekaboo. She didn’t wave or clap. We spent hours with an inspirational speech therapist – she virtually stood on her head to get Livvy to engage, but it was very difficult.
Livvy then went through a stage of saying the word ‘more’ in a low, drawn-out way. You could sense the effort it took to push the word out. She would over-generalise this word, using it for everything.
And then, one day, she stopped, and we haven’t heard any words since.
But so much of our communication is non-verbal. Livvy’s body language is key to us understanding her mood, and she uses it to express choices or even an opinion.
This can be very subtle – a sideways glance, or a brief movement of her arm. She lets us know that she would like to get out of her wheelchair by moving her legs and arms and pushing on the sides.
Livvy can express pleasure by laughing, or annoyance with a low, irritated growl. She lets us know she is upset or doesn’t want to do something by raising the intensity of her vocalisation, or using a deeper tone of voice.
She most definitely recognises voices, and will turn to familiar people. I remember a few years ago rushing up to school as Livvy was not well after a very severe seizure.
Staff had struggled to calm her down and Livvy was pacing round the room, very agitated. I walked in and she immediately calmed down. It was a really memorable moment for me.
Livvy also used PECS (Picture Exchange Communication System) for several years before her epilepsy became so severe that it was too demanding.
We felt the power of this was that she realised she was sending a message to somebody else – she was having a two-way exchange, the very core of a conversation. We’re now looking at eye gaze technology as a way for Livvy to make choices.
Livvy knows she is heard
We chat away to Livvy constantly. We have no sense of how much she understands, so it is important to tell her as much as possible out of respect.
We use intonation to give her a sense of what we are saying. We get close to her, we sit with her, I put my face very close to hers and tell her I love her. She cannot say it back but, very subtly, she will often smile.
Livvy knows that she is loved, that she is valued, that she is heard.
Find out more about 100 days, 100 stories, and read the rest of the stories so far.