In an upstairs room in a London pub, in front of 80 or so strangers, I’ll be speaking for 10 minutes, without notes.
You can probably guess what my story is about: my unique and lovely daughter.
Some of the speech will refer to things I’ve mentioned on this blog. It will also reveal an uncomfortable truth I’ve never said out loud before.
I hope it goes well. I hope I’ve judged the tone right. I hope I can get through it.
I’m slightly worried that most of my practising has been done as an internal monologue whilst swimming. Although if the dry-land recitation is looking wobbly, a friend has promised to don a pair of red shorts and throw me a life-ring.
At the risk of drowning in swimming analogies, I'm going to be throwing myself in at the deep end. I need to pace myself, and - most importantly of all - I must remember to breath.
I’ll see you in the changing rooms afterwards.
Video is John Williams - Theme From Jaws
Video is Frightened Rabbit - Swim Until You Can't See Land
PICTURE: Some of the Makaton symbols we used with our daughter
It’s hard to believe now - particularly on a day when my daughter tries out the ancient form of torture on me known only as Death By A Thousand Questions - but she had trouble speaking when she was little.
Prader-Willi Syndrome comes with a whole bundle of symptoms, one of which is hypotonia (low muscle tone). This can affect speech, as you need good control of your jaw, tongue, lips and palate to be able to speak clearly. (By the way, if you’d like me to, I can accurately demonstrate how a lack of muscles in this area can affect speech and cause unintelligible slurring - all you have to do is feed me a bottle of red wine).
When my daughter learned to speak, it wasn’t just physical hurdles she had to overcome. With a learning disability, she also needed more stimulation and tricks and techniques to encourage her understanding of language.
So my girl, already quite the social butterfly with her visits to her paediatrician, endochrinologist and physio, had to make room in her diary for speech therapy. And we all had to learn Makaton.
I’d never heard of it. Annoyingly, though, every time someone mentioned this new word, all I could hear in my head was the music from that washing machine ad: “Ariston...and on...and on...”
Makaton turned out to be a kind of simplified sign language for children and adults with learning difficulties. It used hand actions and pictures to encourage speech.
I couldn’t get my head round it at first. How was using a sign to express what you wanted going to help you talk? Surely it would actually replace the need for talking?
I didn’t understand. And for a few months, after learning simple signs and pointing to symbols when we talked to our daughter, it didn’t seem like it was having the desired effect.
But of course the specialists knew what they were doing. They’d drummed it into us: don’t use the symbol without saying the word. So we didn’t. And although we started to feel like we were wasting our time, we persisted, and our daughter quietly took it all in.
Then one day, she uttered her first word. Or rather her first part of a word.
She placed her palms together, and then fanned them open, looking up at me as she did so, saying: “Buh...buh.” She’d mimed the Makaton sign and sounded out loud the first syllable of her first word - book.
