My Name is Sydney

I’m very pleased. I have been wanting to watch this for ages but had no luck tracking it down in the UK. Yesterday I discovered it was on Vimeo. My Name is Sydney, a short film about Sydney Edmond who uses a letterboard to communicate. Sydney loves to dance.

Castle gone

Not a great photo. My phone camera is rubbish; I was at the beach; Archie was heading off in the opposite direction and the sun was bright (yes really – although it has to be said only momentarily).

This feels like a bit of a first, although I’m not sure why. For once we’d gone to the beach as a family. Louis was trying to fill my bag with stones for his stone collection (don’t ask), Joseph was playing football, Richard was throwing the ball  into the sea for Mad Dog and I was running around after Archie whilst simultaneously trying to persuade Louis that only small stones belong in the stone collection. Anyway, Archie grabbed the talker and said ‘castle gone’. I admit I had absolutely no idea what he meant.  I wondered whether he was talking about Burgh Island hotel, but no, that didn’t seem to fit. He pointed at an empty spot and it dawned on me. Last week at Breaking the Barrier there had been a bouncy castle on the beach. I agreed that yes the bouncy castle had gone. He continued: ‘hamburger cheeseburger hotdog gone’. Yes indeed (last week there had also been a barbeque on the beach, which he’d enjoyed just a little).

It’s definitely a first of some sort. Not a request, not a repetitive phrase. Archie simply wanted to share something that he’d noticed with me. It’s not the first time he’s done that, although I think it’s the first time he’s done that using language I didn’t even know he understood let alone could locate on the talker (‘castle’). And he was very pleased when I understood.

The Little Mute Boy


The Little Mute Boy

The little boy was looking for his voice.
(The king of the crickets had it.)
In a drop of water
the little boy was looking for his voice.

I do not want it for speaking with;
I will make a ring of it
that my silence may wear
on its little finger.

In a drop of water
the little boy was looking for his voice.

(The captive voice, far away,
put on a cricket’s clothes.)

FREDERICO GARCIA LORCA (From the Spanish; trans. W.S. Merwin)


Understanding why

I recently wrote about a day of  challenging behaviours at the beach. One of the difficulties when dealing with behaviours in a child with communication difficulties is understanding why. If you don’t understand why something is happening you can’t deal with it, or help in anyway. But if your child can’t talk, well you have a problem. You learn to analyse behaviours and look for triggers and patterns.

So we went to the beach again. And had exactly the same pattern of behaviours. Archie was relaxed, until we were about a mile away from Bigbury when the shouting and hitting started. Once again Archie was talking/shouting about going to Ireland. The talker helped understand what was being said. “Monday surfing, Thursday Uncle Stephen, Saturday Granny and Grandad Ireland, go ferry”.  Finally the reason for the behaviours dawned on me, it’s almost a year to the day since we travelled to Ireland, and the above is what we did that week. Of course I couldn’t remember which day we’d surfed, or travelled, but luckily amongst the clutter found last year’s diary and yes he had remembered correctly.

Archie’s memory is extraordinary. Using google maps he has shown us he clearly remembers places he last visited when he was 2 (he has, for example, corrected me when I have found the wrong house on google maps). But this memory can cause problems particularly because he can get very stuck in particular thought patterns related to things that have happened in the past that he would like to happen again. This is hard for him to deal with and painful for us to watch. In the case above his memory means that he knows it’s nearly a year since we travelled to Ireland. I barely remember my wedding anniversary each year, let alone what I did when. Archie can’t forget. Add in some teenage hormones, and a dose of obsessive-compulsive thoughts where he can’t stop thinking about Ireland and we get a mini eruption with each beach visit. I’m hoping that once we have had the anniversary of the trip he will calm down. In the meantime, now I understand the reason for the beach-trigger I will talk to him more about trying to think of something else (this has worked before). Understanding why we’re getting the reaction has made me feel more positive about helping him remain calm.

Once Archie had got over thinking about Ireland he had a pretty good surf at Breaking the Barrier with Jon, and again visibly relaxed once he was in the water. Breaking the Barrier had its usual happy atmosphere, even the rain obliged and held off. Archie is getting pretty good at standing.

The swell wasn’t great. The waves were a decent size although weak, but Archie managed to persuade Jon to give him a tandem ride as well.