When your baby is 1 week old, and she has her 1st MRI and the results aren’t what you thought you would ever hear, let alone something you never want to hear……Veronika has an injury to her brain from the bleed she had before she was born, and we believe that it will affect her movement down the left side of her body, and she will most likely never walk….
I guess at that point in you make a decision, one of two possible options i guess. You either think ‘oh well, if that’s how its gonna be, why bother,’ OR ‘Yes she will walk, and we will come back in when she does and say I TOLD YOU SO’.
Monday, July 9, 2012
Hoping to find Veronika the right voice.....
well our appointment went really well....what we were basically trying to find was a suitable way using technology that Veronika can use to communicate. Veronika only says a few words consistently(Mum, up, more and no), we have been teaching Veronika Auslan sign language(I started when she was around 6 months old, but it took well over a year before we got one back from her) and now Veronika would have 80 + signs she uses often putting 2 together (eg more + chocolate).
But because Veronika has Down Syndrome and Cerebral Palsy left side hemiplegia, her signs have been modified by her to accommodate her left hand, and thus there are less than a handful of people who can actually tell what she is signing.
At the same time, Veronika is very good at answering questions with a yes or no answer, by either nodding or shaking her head, or if it's a really definite no, she will say no, likewise if it's a definite yes, she will say yea.
So the aim of today was to find an app for Veronika's iPad that she can use to communicate with when she is in kinder next year, and we want to make sure there is enough time teach her how to use it. The communication specialist we saw specializes in communication with technology, using various devices as well as iPad. We decided that the iPad would probably be the best for Veronika considering she already has one. He was also very impressed with how well Veronika can navigate her iPad, and how accurate she is with her fine motor skills at touching the right part of the screen, even when the button is quite small.
We looked at quite a few apps, and how complex they could become...and decided that the one touch = one word would be most suitable for Veronika and the level she should be capable of. We are thinking about a minimum of 50 icons, but possibly 70 on the page with core words, then an option for 'fringe' words that she can use to expand on. There was one particular app that looked really good Touch Chat HD
The aim is that at the moment as an example is that Veronika can sign 'more' then 'bubbles'....but with the use using her iPad as a communication device, we can start to teach her sequence patterns, so instead of signing 'more' + "bubbles', we can teach her to use the iPad to say 'I want more' and then hopefully 'I want more bubbles please'. Teaching her some sentence structure.
So the next step is to borrow an iPad off the communication specialist for a few days, to see how well it does suit Veronika, before we go and spend that kind of money on an app that might not be suitable. Its great that there is the option to do this, as communication apps aren't cheap and we need to make sure it's the right one.
I know that Veronika has a lot to say, and I belive that she will talk at some point. But in the mean time this should hopefully reduce some of the frustration that she is experiencing when we don't know what she is trying to 'sign' to us.