Last day of school - another one of my very amateur poems !

The time has come and now they have left

Some of them clearly quite bereft

Sad little faces smiling through the tears

Sad to be leaving friends of the last few years

When you reflect back oh they have grown

Looking at the photos the years have just flown

But a lot has happened throughout this era

Time has to move on and secondary looms nearer

Lots of freedom and time to play

Over  the next few weeks of the holiday

Over time some friendships will stay strong

But inevitably others will move on

Whatever happens in their next chapter

They will have many memories they can re-capture

As their primary years have come to an end

They will have very fond memories of their wonderful friends.

offensive programme

It has been bought to my attention via a fellow Touretter that there is a documentary soon to be shown called the Undateables. Firstly the title of the programme should make you realise that this is insensitive. I need to find out more but the gist of it is that it will feature young adults with TS, Aspergers and narcolepsy and try to fix them up through a dating agency.  The programme makers claim that it will be a sensitive look at how difficult it is for people with these conditions to find love.  I fear that this will be another cheap laugh at vulnerable peoples expense. If it wasnt the title of the programme would be very different. I will find out more and post but I do know that other Touretters are not in favour of this kind of programme to bring awareness. There are much better ways of doing this other than sensationalism.  No doubt it will include the stereotypical Touretter that swears uncontrollably making the public believe once again that this is what TS is about. This is very very wrong.  TS is a much more complex condition and only 10% of TS sufferers also have coprolalia which is the proper name for the swearing condition.
I would say, if you want to make yourself aware and educate others around you please do not watch this kind of programme but go to the official websites such as Tourettes Action where there is a wealth of information and video clips by people that have great knowledge and experience, with no angle other than to educate.

Statement Review

We had a very successful statement review today and learned that for the next 6 months (until next statement review) the boys will both receive full time 1:1 support.  We had a report from a tourettes specialist and Occupational Therapy all of which made some very useful recommendations for school.

New school are requesting notepads to help with the boys writing in literacy lessons and OT are recommending 3 x 15 minute sessions daily to help combat the sensitivities they have. They also have lax ligaments in their fingers which makes it difficult to write and causes pain when writing longer tasks. There will be exercises recommended to help with this.

I would urge anyone with a child who has tourettes and any associated sensitivities to pursue OT. I would also urge you to look at your child to see if there are any ASD 'traits' as we feel the tourettes has masked this over time.  We have all put the 'quirkiness' down to the tourettes whilst all along there could have been learning strategies used in teaching children with ASD which would have helped reduce anxiety and therefore in turn reduce the tics.  The tics for my two seem to be driven by fear, anxiety, difficulty processing information, sensitivities.  If you can tackle some of these then hopefully in turn the tics could reduce.

It is early days for us but I will update the post with how we get on.

We are taking a trip to Torquay this weekend to get the mouthsplints checked out.  I am hoping we can do something for Joe as his tics seem to be on the increase at the moment. I think this is all linked with the change of school and the anxiety it is provoking.
Ben is using his a little and feels it helps - only time will tell.

Looking forward to summer holidays !

Well mornings in our house are always like treading on eggshells !!
Desperately hoping the boys dont kick off against each other for anything otherwise its game over.

Very very tired now as end of term, lots of things going on. Despite going to bed at 8 and getting up at 8 they are still very tired. 

Ben this morning tried on about 8 polo shirts and couldnt wear any of them. Seems to have become sensitive to the material so I had to dash off to supermarket this morning in the hope they would have some school shirts - thankfully they did.  After finding a vest in the bottom of a wardrobe (because he didnt want his belly showing through the shirt) we finally got to school.  The things we have to do !!

Had their new school induction day yesterday mixed feelings from both of them I think. As with all the kids at the moment sad about leaving primary but quite excited at the prospect of big school. For the boys though its twice as difficult as they have their tourettes to manage and they have none of their friends from primary going to the new school.  I really feel for them but we are convinced its the right school for them.

Joe is so worried that he will lose all his current friends and that they wont want to see him any more. He cried twice while he was there yesterday - poor kid. 
Not only does the tourettes affect them directly with the physical side of it, but indirectly too, having to go to a different school, having a specialist talk to the whole of year 7 about their condition which they understand is necessary but it cant be nice knowing someone is telling a whole load of people about your problems, problems you just wish would go away !

To top it all Bens best friend is moving to Australia in the summer, a very emotional time for us all I think :(

Joe asked this morning if his friends could sleep over on the last day of the term in the big tent in the garden. Lets hope the weather is good so they can do that. Would be a nice end to the term, and remind him that his friends live close by and providing he works hard, he will keep those friends.