At the time of diagnosis, Bright Eyes' language was mostly confined to 'scripts'. He learned phrases from books, TV shows and CDs and repeated them over and over and over and over and over and over and...
That would have been irritating enough, except that most of the time he wanted a response from me, again and again and again and again and...
So a typical conversation would go like this.
Him: Thomas the Tank Engine, mum. Thomas the Tank Engine mum. Thomas, mum. Thomas the Tank Engine mum. Thomas the Tank Engine mum. Thomas the...
Me (in a resigned voice): Yes, Thomas. Thomas is a train.
Him: Thomas has six small wheels mum. Thomas has six small wheels mum. Thomas has six small wheels. Six small wheels mum.
Me (in a slightly more irritated resigned voice): Yes he does. He's got wheels! Wow! Six of them.
Him: Thomas the Tank Engine mum. Thomas the Tank Engine Mum. Thomas the Tank Engine mum.....
And so it went on, for most of the day.
I was in a dilemma about it. On one level, he was communicating with me, even if it was a scripted phrase, and even if he was trying to control my communication. (I'll talk more about control in a future post.) So I didn't want to just ignore him. Anyway, I couldn't ignore him. He rose in volume every minute that I didn't answer!
Two things helped - both suggestions from our RDI consultant.
Firstly, she prescribed I-pod therapy. Not for him - for me. As my tension levels were rising with all the scripting, she suggested I get some music and play it all day. I would be able to ignore some of the scripting and keep myself happier, thus making it easier to communcate more effectively with him when I wanted and needed to.
I tried this - and it worked. I felt happier, and surprisingly it reduced Bright Eyes' demands on me a fair bit.
The second solution was to start chanting. I used Bright Eyes' scripted words and took control of them myself by turning them into a song.
This was amazing. Our conversations started to go like this.
Him: "Thomas the tank Engine mum. Thomas the Tank Engine."
Me: (in a rhythmic kind of way) "Thomas, the Tank Engine, Thomas the Tank. Thomas the Tank Engine. Thomas - Yeah! Thomas is a train, Thomas is a train, Thomas is a train. A cute little train - yeah!"
I found that he would start to look at my face and process what I was doing. He would smile and look expectant, and actually enjoy it. Sometimes as time went on, he started to join in.
I'd change the chant too, so that he would not make the chant into a new script. Maybe change the words, or the rhythm or the pitch or the speed... it made him sit up and notice and start to interact with me.
Progress report: Six months later: he still has scripts. But he doesn't repeat and repeat and repeat like he used to. Because his brain is processing so much better, he is able to use his own speech and think for himself. And as he does that, I notice a huge reduction in his scripting and repetition. I hardly ever have to chant any more. And I don't use the ipod much at all.