message to riven........

[linglette]

probably a silly suggestion showing depths of ignorance and all that again but.....just thinking about your efforts to give your daughter as wide an education as possible.

DH came home with a harmonica holder the other day - you know, the thing you hook over your shoulders then put your harmonica on, so that you only have to move your head (and really just lips) to play the harmonica - no hand function required at all. I'm sure you've tried harmonicas in your time and will know there are different types you can get (some chromatic, some fixed in one key) and many play a pleasing chord (or two) even if you just laugh into them.

Anyway, just wondered whether dd might find it interesting....

I would also like to recommend an amazing resource - it is a goldfish bowl with lots of pretend fish, frogs, and lily pads, and comes with different lengths of plastic tubing that you blow through to make bubbles in the water. The shorter the length of tube, the easier to blow. It is so reinforcing as lots of pretty bubbles appear and you can put washing up liquid in - it also makes a cool noise. It isn't directly communication based but in terms of oral motor practise it is brilliant. I will try and find out where it is from

they both sound like great ideas, wish ds would learn to blow as he would find blowing raspberries at people highly amusing!

he's pretty good at sucking on a straw but no blowing skills so far, could dd always blow Riven or is this a new skill?

Oh that's made my day.

I'm no harmonica expert myself I'm afraid and DH can only play a little bit but I'm sure google knows all the answers . Our cheap harmonica is easy to get a sound out of - you get a bit of noise just by breathing out with it next to your mouth - and if you suck in, it changes the chord, so you are making music very quickly. She could almost do "mama mia - here I go again" without changing mouth position.

Blowing must be harder than sucking - dd2 has mastered sucking (but is now nil by mouth unfortunately) but not blowing.

Please please NOT Mamma Mia!!

either blowing or sucking should make a typically responsive harmonica work.

know what you mean about the reflex/movement thing.

every morning when he wakes ds does a big proper full stretch, arms up straight above his head and big full stretch of the legs, sometimes accompanied by a big yawn!

but any other time if you ask him to lift his arms straight above his head he cant do it at all, nor stretch out his legs on command and if you try to do it for him it usually ends in a dystonic spasm

but every morning he seems to have enough control to stretch the way you or i would, must just be a reflex surely?

i think with ds it must be a subconcious reflex but when he tries to do it and takes the time to think about it, the dystonia kicks in and he cant.
the sinemet has helped him a wee bit as you know, we are on 6 tabs (300mg) a day now and can go up to 9 tabs (450mg) if we want altho neuro is pushing for the intrathecal baclofen pump but im avoiding that for the minute!

our old physio/ot never came up with any "improving" ideas either, just more "making him comfortable" stuff.

although ds can shake hands and wave (after a fashion) he can do bugger all else really, had a bit of a breakthrough with the joystick for the powerchair in that he could grip the t-bar one really well...so he did learn something in the 3+ years of conductive education
its still a hit or a miss whether he will really be able to control it himself but i live in eternal hope...and it has parental controls!