2013 update

Hi to anyone that cares to read this.
I havent been on for sometime, completely forgot about my blogging to be honest.
Today I was talking to a lovely research nurse at Nottingham University about some research the boys would like to be involved in and it reminded me of the blog.
So here I am.
Well the boys still have TS of course, it waxes and wanes of course, but they do seem to be managing fairly well.  Their attendance at school is up in the high 70 to 80% which is incredible progress. Even if they have  a bad day, or a difficult start to the day they always want to go in which says such a lot for the support they are receiving. 
They have the classroom built and complete - called 'the learning room', where they can have lessons if they are particularly ticcy. They have reward schemes for trying to stay in mainstream lessons longer and for getting in to morning and lunchtime registration.  Just a week ago they had a reward of cooking in the school canteen which they love, and they were allowed to create their own panini which was put on sale !! They have a lovely SEN teacher 4 days a week who will be doing some 1:1 lessons on the core subjects to help them catch up. She is my main point of contact now and we normally liaise with each other on a daily basis.
This time of year is always nervy for us as it is generally when the tics increase. As I type this I am very aware that I have collected Ben from school 3 times this week early, due to not feeling too well and tics being off the scale. So a tad worried this might be the start of a difficult period for him.
His eye tics are back with a vengeance and I was just reading last years post around the same time and there they were !! Bizarre I know.  We have the eye tics triggering bigger body tics.  He is going to sleep ticcing and waking up ticcing which makes the start to the day very difficult as he is exhausted.
We have little chats about having tics going into adulthood which is highly likely. I like to reassure both boys that it doesnt have to get in the way of what they want to achieve.  We have to continue to help to raise awareness so other people understand.
When I picked Ben up he was being quite vocal and physical with his tics and there were children outside the school. I asked him if he felt uncomfortable with people seeing him and he said no not really.  He said there was a lad in the medical room who was trying to distract him and making him laugh. In general we find people are very understanding if they know what the problem is. Generally its ignorance that is the issue. People react agressively when they dont understand things.
Joe seems to be coping quite well at the moment and Im keeping everything crossed as I write this when I say that his tics seem quite settled.
We have cut out aspartame from the boys diet as there is some suggestion that it can exacerbate tics and I would say a couple of Joes tics have died right down but they could just be in a waning period. Time will tell.
Clearly its not helping Ben too much right now !!! But we will continue with it as there are lots of downsides to consuming aspartame and other artificial sweetners. 
Not much to say other than things are going pretty well, school continue to be extrememly supportive and flexible. Couldnt ask for more. So if any of you out there are having trouble with schools then contact me as I believe our school would be happy to talk through their strategies and approach.
I will be back on in a few weeks when we have been to Nottingham for our first little reasearch session. Ben is apprehensive but we will see.  I believe its important to do this and hopefully will be able to alleviate his worries.