So we’ve been quiet for a little while. Mostly because we’ve been busy in a positive way. We’ve had a holiday and we’re planning our wedding so generally we’re doing something or other.
With May being PWS awareness month it seemed fitting to do an update post.
So what has happened since I last wrote a post…. *goes and checks last post*
We now have consistent signs and a good amount of speech. We say please for things we want and we say thank you (a lot) we even have a game that we’ve named thank you. He has some spiderman cards that he likes to put on you one by one and say thank you every time he puts it on you. We’ve mastered the word no. This has a wonderful waggy finger with it to ensure you fully understand the no, it’s highly entertaining.
Seizures are still fully under control (thank god) so that’s becoming less and less of a worry.
In nursery he is slowly moving up to the toddler room. He’s enjoying it so much that he will stand at the door of his current room pointing to get out of the room and into his new room
We have 100% found our willy. He doesnt like wearing clothes and at any given opportunity will strip off and do his best to get out of his nappy and have a play. We aren’t quite at the potty training stage just yet but we are getting there as he will tell me yes or no when I ask if he’s done a poo or not. We’re in no rush to do it, as with everything else we’re waiting for it to happen in Olivers time. I’m yet to work out if the outbursts over certain items of clothing is an issue or not. He could just be working out what boundaries he can push or it could be some kind of other issue…we will see!
We had our final review with portage and compared to how well he has progressed since we started. According to the tick boxes he’s only about 6 months behind cognitively and a little more physically but we knew that. He was a tiny potato that didn’t really move when we first met Roz. He couldn’t sit independently but now (this leads me on perfectly to my video) he is able to do this
Now please don’t see everyone’s lack of reaction as a lack of caring. There was a lot of this little step (physically small but its a huge achievement) on holiday and we discovered that if we pay attention to him he won’t do it but if you ignore him and video him in a stealthy way he will try it.
Now we just need to build up his confidence
Go orange day is Friday 31st so if anyone would like to wear orange and tag us in photos we’d absolutely love that!