Wow – I haven’t been here in such a long time!

I have been involved with the Queensland parent support group in Australia. There is a lovely little group forming and we are also getting contact with families in the outback as well. That’s the beauty of the internet, although we may not have easy physical access to each other, we can log onto the internet, either via the http://www.fragilex.org.au  website, facebook or through this blog and catch up with news about each other, as well as find out about research that might be going on.

One of the reasons I have not been here is because over the last 12 months I have been quite sick but I am hoping that things are getting better and that there will not be any more surprise trips to hospital.

Geoffrey and Peter continue to do well and over the last six to twelve months we have seen an enormous increase in functional speech from him. He is not repeating sentences as often and is actually initiating conversation and telling us relevant information about the topic.  He isn’t jumping around the place as much now. We looked yesterday at a friends photos of the EKKA which is on in Brisbane and Geoffrey was telling me about all the rides and his experiences on them – all contextually correct.

Peter is also coming along well. He continues to be non-verbal but he is more predictive in his anticipatory skills. He is always wanting to lend a hand, make you a cup of tea or coffee or help dig in the garden.

I am working two days a week at the disability program that Geoffrey and Peter go to and then working 3 days a week in my Nursing. I have only just gone back to Nursing so I am unsure how it is all going to work out, but I am hoping that it will. It is important to me. I want an input into the type of service that the clients receive, mainly to ensure it remains relevant and contextual to their lives and interests. Running group programs has been something that I have done for many years now, so it is something that I can do easily. I try and take the clients conversation and feedback about different things that are happening in Brisbane or even Australia and turn them into learning experiences, using the topics to practice writing, spelling, simple arithmetic and conversational skills. Even if it’s in the context of survival reading, writing that adding, it is important. If I can teach a person who cannot read or write what a form looks like and then teach them not to sign it with their sign or symbol until they have shown it to someone they trust, then my teaching has been beneficial.  That’s the important thing – instilling the sense of choice and independence in the clients I have direct care with, but also encouraging them to seek support especially if they are not sure.

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