Mouthsplint - looking promising

Following a couple of attempts at the mouthsplint we made another visit to Dr Varga in Torquay for new diagnostics and a new lower splint.  Once the splint was fitted yesterday the boys were anxious to leave. Pete and I were chatting to Dr Varga and the hanging around would normally have triggered tics, or they would start to irritate each other which would in turn set off the tics. This didnt happen they were very calm, in fact the whole room felt calm, something we dont experience very often.
Joe had been experiencing really nasty ankle twisting tics and leg tics for a good couple of weeks. yesterday morning he had to come back early from a walk with a friend and their dog due to the tics being so bad. Walking back to the car with his mouthsplint in he did not show any signs of tics. 
In the car on the way to Torquay he experienced leg tics due to being cramped up in the car. This resulted in him punching his calf muscle very hard on numerous occasions.  Apart from doing this 3 times when he first got in the car to come home- it did not occur again during the 3.5 hour journey. 
Ben has not been able to touch a rucksack for months due to the sound of the material. He picked up his dads rucksack without thinking and was astonished when we pointed it out to him. He scratched at the material and it didnt trigger the tics. On the way back in the car despite being exhausted, Ben showed only minor head nodding tics and small arm tics.
At school today both boys were very tired following the late nights of the weekend. Last week we all noticed their tics increasing, so much so that on a couple of days the boys didnt get into their main classes at all.  Ben actually had Wednesday off school due to having physical and vocal tics non stop for 8 hours. Normally being so tired, with tics appearing to increase (and it being a Monday !) we would have expected a very ticcy day at school. This was not the case. Ben had a few minor tics and was very tired but no major shouty thrashing tics at all. His LSA said compared to last week it was not bad at all.
Joe had one or two leg tics throughout the whole day - last week he couldnt walk two steps without the leg tic. His arm flicking tic was hardly noticeable. When he took the splint out to go to bed the tics began to increase. His leg kicking tic came on, his arm flicking and his whole body was jerking.
I know this is just two days and i will record our observations over the next two weeks as the research shows that the tics can reduce over time. I will keep you updated.
Take a look at the videos of Joe and Ben on their very first visit to DrVarga.
His new website is tourette-syndrome.co.uk.
Trust me it is real, they are my kids and we witnessed the difference.

tics increasing

After a fantastic start to school the tics seem to be on the increase. This does not appear to be anxiety related as the boys are happy and confident at schoo.  School still being really good, organised and pro-active. Very difficult couple of days for both boys and Ben is right now being kept awake by his nightly tic attack
School are coping and are keen to ensure the boys stay in school and remain safe and secure whilst still trying to do something if tics are present. They have new laptops arrived in the last couple of days so this should help the LSAs with learning and distraction.
So horrible to see when the tics start to get the better of them. They are exhausted and end up in a vicious circle as tiredness lets the tics take hold and so it goes on.
They remain happy despite the difficult time they have, I dont know where they get their strength, an inner strength that Im not sure I would have if in their shoes. Touretters you truly are special people

What a difference a statement makes

Talking to another mum this evening whos son has TS but unfortunately no statement.
Having a really horrible time, not getting any support even in lessons where he could potentially hurt himself. Has increasingly bad anxiety and feels sick a lot of the time. Banned from going to the medical room but not given another option of a 'retreat' area. 
Comments by teachers about lack of concentration, eye rolling and not listening (hello this is a tic !!)
Handwriting a big problem (despite this being well documented as an issue with TS) but no laptop.
Unfortunately mum not aware of parent partnership and the support and advice that can provide - she is now !!!
Thank god the boys have their statement and the hours that provides.
So much depends on funding, schools are stretched to the limit and with further budget cuts from government vulnerable children without a statement will suffer as schools cannot afford to provide extra support without the money. What will happen to these poor children? What happens to their poor stressed out parents?

this mum cannot go to a meeting at school without ending up in floods of tears. It should not get this bad before someone gets the right help. I know exactly how she feels, I have been there in her shoes, godforbid we end up there again.

Young boys like this will become teenagers. Teenagers that hate school and believe that no one cares what happens to them or does anything to help them. They will become angry and get themselves into trouble.  If they are supported and helped at the right time this will not happen. Someone needs to wake up !!

Phew what a relief

Well after a bumpy start on Tuesday it was a successful day - few tics and breaks from class but managed very well by school - everything went to plan - fantastic
Headteacher spoke to the boys after school saying how proud he was to see them and see them in assembly.
Wednesday - up early raring to go, even a little excitement !
Thursday, rucksack on back, PE kit, didnt need me - off to reception to meet LSA by themselves.
Minimal tics, each completed a science test (in their little room).
Ben even did PE today and managed to change with everyone else despite feeling a bit uncomfortable with it.
They both said they are enjoying it more than primary school because moving from one class to another is actually helping them. They dont feel so cramped up as they did having to stay in the same room all the time.
During yesterday and today they have struck up the odd little conversation with other kids.
Joe has Food Tech this term so he is well chuffed.
Couldnt have got off to a better start.
Peer Awareness training tomorrow - Head teacher also going to talk to the other years during their assemblies.Catch up with TS specialist tomorrow following the training and her chat with the boys/teachers.
Looking forward to the feedback.

Big day tomorrow

Hi everyone
Boys start secondary tomorrow and the school could not be more prepared.
After our disastrous start to the secondary process and the discrimination we recevied from our first school of choice, the school we decided on have been incredible.
They have had a TS specialist in for an inset day for whole school / borough training
Risk assement in place - put together with me at the meeting
Tic management plan - put together with me at meeting
Planned learning breaks
Retreat room which the boys decorated with posters today with a small desk and beanbags/cushions.
Peer awareness planned for this coming friday by TS specialist - meeting arranged with me later in the afternoon for an update. She will also see the boys to see how they are settling in during their first few days.
Distraction techniques
OT due to go into school to introduce sensory diet 3 times a day
'Catch up'  planned following so much school missed over last 3 years
5 TAs to rotate between the boys for different lessons. One of them overseeing the others and an extra pair of hands should someone be off.
Application for funding for purpose built area
I have since found out they have 2 other children at school with TS so the specialist advice we have been able to introduce to our borough following advice from Tourettes Action will be invaluable for the other children too. Thanks to the helpline.
If it wasnt for our horrible experience with the first school we would never have found out about this one. They did us a great big favour without realising it - they should hang their heads in shame.

I just pray the boys make friends quickly as they are concerned about not having their existing supportive friends with them.