Friday, 23 July 2010

Everything's on the up and up

which kind of worries me. I don't want to relax too much because from past experience just when you think things are going to be okay Seth starts fitting. But at the same time I don't want to be looking for trouble! Apart from one small 'blip' Seth hasn't fitted for a couple of months - in fact I've now stopped counting the weeks. & he's sitting. Properly sitting on the floor by himself with a much straighter back. He can sit and move a ball with his fingers and tonight he did it and started giggling. Fantastic!
It's a good job too because I don't want to have to rely on a floor sitter - it's exactly what it sounds like and this week the company sales rep came to demo one with our physio. The appointment was made a couple of months ago but when she turned up she announced that she didn't carry that item in her demo stock. What a waste of time! These companies do whatever they like - they set ridiculous lead times for new equipment and repairs and then charge the earth. & some of the build quality is really shabby. But there seems to be little competition, they're dealing with busy community workers and they get away with it. I don't think we're going to need the floor sitter anyway, but I have no idea when Seth will get his new wheelchair whilst the brakes of his current one keep seizing up. Maybe it's time to start naming and shaming these companies....

Saturday, 10 July 2010

We were given a development diary some time ago by one of my many 'professionals'. It hasn't any ages associated with it and simply allows you to tick when Seth shows new physical, social, cognitive etc abilities. It's very large and detailed. As Seth always seems to be doing something new every couple of months I get all hopeful and open this diary with pen ready to tick off new boxes. & yet I'm lucky if I can find one thing that he's done. I think I've finally realised that this diary is for development which is delayed but should still follow the right route. Seth is developing but it's never going to be 'normal' so I think it's time to stop trying to tick boxes.

Tuesday, 6 July 2010

Finding support

I started this blog because I didn't know of any online groups to share my experiences with. But then looking for ways to get my blog 'out there' has led to finding some groups. So I have gained another benefit from doing this. I've mentioned Nutmums before but I've now discovered their discussion forum which is great. In addition, there is a Facebook group called 'Bristol is able' which has expanded from Bristol only members such is the nationwide need for online support/discussion groups. Certainly being able to connect with people in a similar position to me is great relief!

I have finished my project and it has been duly stuck on the wall around Seth' bed. He seems to like having them there which is a good start! Today Seth was amazing in swimming class; he held onto the rail and even slid his hands along it. Plus he vocalised in response to the teacher saying hello. In addition to all, this I finally made it to the toy library so I've got some new toys for the next month for the princely price of less than a quid.