The other night, Mum even came in to my bedroom, and told me to be quiet! She said I'd wake my littlest sister, who shares a room with me.
Imagine that! Mum telling me to stop talking!
Being unable to say words is hard.
I can't say I'm thirsty... that I am cold, or hot or itchy.
I can't say that an ant or a mosquito just bit me... so, I have to wait until someone finds the lump, before they know.
If I am in pain, I cry. Everyone reacts to that instantly... they know that noise... but, I can't tell them what is wrong.
And so, they have to guess. They have to figure it out.
Is it a headache?
Am I hungry?
Did I hurt myself?
Is it a sore throat?
I can't tell them where I am hurting, or what I want, and that is hard.
I can't tell them what's funny, either... so I always leave them guessing!
They would love to hear me answer back... backchat. They would love to hear me tell a joke and stumble through the words of a song.
We're working on it.
For now, I'm what people call 'non-verbal'. My brain damage doesn't let the words come out properly. So, when we say I have been chatty... we mean... I have been talking, in my own way. Sometimes, I don't really make much noise, all day.
Other days, I have a lot of things to say.
I am usually chatty after preschool. I did so many cool things, and I want everyone to know about them. If I do something fun and exciting, I am always chatty afterwards.
The first time I went surfing, it was pouring rain, and my noisy sister stayed in the car. She was only tiny, back then. When I got back to her, and back in the car, I told her all about my surfing fun. I talked and talked. Mum and Dad didn't know what I was saying, exactly, but they knew I was excited. That made them happy.
I wonder whether my sisters will be able to understand my words?
I think they will... Somehow. That would be cool!
For now, I am working on a few words...
I am trying to say Mum, because I know she loves that. The word Dad is much trickier, because I have to move my tongue up to the top of my mouth!
My aunty Carol helps me say her name... by moving my mouth - over and over again. I haven't said her name in about three years.
We're still working on these words: more (food, tickles, kisses, fun), hung(ry), drink, hi and off (to tell people to get off me). I'm trying to say hurry and it would be good if I could say hot and cold. One day, I'll say hi and love.
The people who are around me a lot, recognise the different shape of my tongue... When I curl it, I want a drink. If it's stuck out and flat, I am hungry. When I move my arms fast, I am saying I want more of whatever is happening... kisses, eating, fun things. When I arch my back and swing my arms, I am trying to get off people, and back to the floor.
These are things the people who spend lots of time with me know.
They understand these actions as easily as they would understand my words.
And that is cool... but, I need words, for when I am with anyone else.
Just because I don't have words, don't think I am not understanding you.
Watch my eyes, as I listen to you. You will see me concentrating.
If you are funny, I might even smile... a cheeky little grin.
And, if I have lots of fun, I will tell everyone all about it, in my own way.
Mum and Dad would love to hear me fighting and arguing with my sisters.
They would love for me to tell them No! They'd love to hear me sing and cheer and count. They'd love to hear me talk.
Until I get my words... they are happy to hear me being chatty... just not too loud, and not when I'm in bed, and should be sleeping!
#raisingawareness #cerebralpalsy #nevergiveup