This is for Sarah …

….. who, along with her mother, is always the first to complain that we don’t write enough entries, but above all don’t put enough pictures on the website. We met Sarah’s little brother on PICU at St George’s Hospital in the summer of 2003 and the families have kept in touch ever since. Sarah is currently studying medicine at St George’s Hospital and, having worked very hard during the summer, has taken a well-earned break and is enjoying herself in Australia. She has, however, found the time to send the boys a postcard including a request for more news! So, Sarah, this is for you!

Unfortunately we don’t have many photos at the moment but here are some that we do have. As you can see they were really taken at three sittings but they are cute nonetheless!

In the last four weeks Max has developed and grown in amazing ways. One morning we were in his bedroom and he was wondering around on the floor, as he does, and he found his monkey which he had thrown out of bed the previous night. He picked it up and bum-shuffled over to the door which was shut. He dropped the monkey, turned around and came back towards me. I said “Max, where’s your monkey?”; he turned round and looked at his monkey, so I said again, “yes Max where’s your monkey?”; so he went over to the monkey, picked it up and brought it over to me. Jemma and I were stunned. We’ve always believed that he understands a lot of what is said to him, but this was the first completely clear demonstration of understanding. Later on that morning, Jackie was coming for a Portage session, so we took the monkey downstairs to see if we could get him to ‘perform’ for her. He sort of did, but he went one step further and when we said monkey he did the makaton sign for monkey. Now Max has also added “please” to his repertoire, what a polite little boy!

On the school front, Max’s amended Statement of Special Educational Needs (SEN) has now been sent to three schools: Bedelsford, Paddock and Greenmead. Bedelsford was our choice, it is out of the borough of Wandsworth as it is in Kingston. The other two have not been mentioned by us at all but are the choice of the Special Needs Assessment team of Wandsworth Council. The lady who is dealing with Max’s case sent me an email to update us on the situation and also telling me that we should visit Greenmead School if we haven’t done so already. This has fired my (Italian) temper like nothing else. We visited Greenmead School back in May and I wrote at the time (here) “Greenmead School caters mainly for children whose physical disabilities are so severe that their cognitive ability is difficult to determine”. This was exactly how the then head teacher described the school. Anyone who has met Max can see that this does not describe him at all and on receiving the email I was very upset that anyone would actually consider it as a school for Max. Luckily both Jackie (Portage) and Amanda, his school psychologist, are doing an update for the SEN and we hope that this will clarify the situation. In the meantime, J and I are planning to visit Paddock School and Bedelsford School again to reassess them in light of Max’s continual development. As I have said before, until a school is chosen, then the school itself cannot try to recruit a one-to-one carer for Max, so the likelihood of Max starting school any time soon is minimal. It doesn’t help that I hear that carers are hard to find, mainly because they are badly paid and have no job security because if the child they are looking after goes to hospital for more than 3 months they lose their job!