I think the thing I find hardest about Oscar’s condition is the communication.
Although Oscar has said odd words he cannot fully talk and we don’t know if he ever will.
There are times when Oscar is upset and obviously frustrated as there is something wrong or something he wants but I am unable to understand what it is.
He is frustrated with me and I am frustrated with myself, as I feel I should know what it is my child wants.
The same happens when he is poorly. The only tell tale signs that he is feeling unwell is that he will be a bit quiet and have a temperature. The rest is then guess work. Does he have stomach ache, earache, headache, something else? I do not know and Oscar cannot tell me. This is the worst situation to be in.
We are working on Oscar’s communication skills and he has become very good at eye pointing.
If we ask Oscar where someone or something is, he will eye point to the person or object, if he knows.
Although, we do not know fully know what Oscar does and doesn’t understand, we think he understands a lot more than we give him credit for.
Over the summer we borrowed a ‘Big Mack’ button from SALT.
This is Oscar’s first step towards communication.
You record a word or sentence into the ‘Big Mack’ and then encourage your child to try and hit the big button and the device will play the word or saying you have recorded into it.
I recorded ‘bubble’ into the device and when Oscar managed to hit the button and the device played the recording I blew some him bubbles, which he loves. I did the same with some of his musical toys. I recorded ‘telephone’ into the device and then when he hit the button I pressed the buttons on his toy telephone so the music would play.
Oscar seemed to really enjoy using the ‘Big Mack’ and uses one in school. We are hopefully going to get one for home, so Oscar is doing the same things at home as he is at school.
We have also downloaded an App called Grid Player.
This is an App where people can choose what they want to say and the tablet will say it. The user can form proper sentences about how they feel, what they want to eat, what they want to do etc.
This App is a little bit advanced for Oscar yet, as we are only just starting on our journey into trying to communicate with each other better.
We have encouraged him to use it though as hopefully this App or similar ones will be of use to him in the future and this may possibly be his main form of communication.
Oscar really seems to enjoy using the tablet and the apps. He especially likes it when we get the App to say ‘I love chocolate’ because he does!
Do you 'baby wear' your disabled child?