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. 

Our holiday

Hi all -
been a while since I posted anything.
We have just been away to France for 2 weeks, really nice break but back to reality with washing and ironing etc.

On the tourettes front fairly uneventful thankfully.  First week spent on a small campsite in a caravan which was a bit on the small side - we realise now that the boys need a bit of space so they can get away from each other. The week was very low key activity wise and we were very easy and went with the flow mostly on what the boys wanted to do.Which was back and forth to the pool/bar area and caravan. We went out for the day to a lovely Chateux. Extensive grounds which they have made interesting for children by putting 20 puzzles dotted around.  Hard enough that the adults get involved too. Enough interest for the boys for us all to get a nice walk in lovely grounds without them realising they are doing it !

We managed to drag them out for a cycle ride which was a bit of challenge. Joe ticced most of the time, which is slightly dodgy when riding a bike ! He has had a persistent arm flicking tic for weeks now which just doesnt want to go away. He persevered (didnt have much choice really) and we managed a 13K ride and all had numb bums at the end of it.  Once we were on the way back Joes tics died down a bit. Joes calf thumping tic has been persistent too. Not much respite for him while away unfortunately.
Bens tics on the other hand have been fairly minimal kept to a few face grimacing tics and toe tapping but all very manageable.

We had one incident with Ben whilst cycling where he spotted a sign ahead that had flashing lights on. Luckily we were on a safe cycle path rather than the road because he had to look at the floor coming up to and passing the sign because he was afraid the flickering lights would trigger his tics.  I shouted to him when it was ok to look up again ! Tourettes affects every thing we do in some way or another.

Second week was spent in a house with a pool.  It was all lovely and the lounge was nice and cool so the boys retreated there to watch music videos when not outside or in the pool.  This gave us some chill down time to sit and read in the garden.  Friends came to visit for 3 nights so the boys had some friends to play with.

The house was near a very large forest which had an old fashioned fun park in it with lots of old metal playground equipment which if you are as old as me (50) you will remember from your childhood, along with numerous other random things.  you would never get this park in England, it would give the health and safety squad a heart attack !!
The forest also had a 'go ape' area with runs of different heights.  Ben managed well until he hurt his elbow getting off a very long zipwire which hurled him into a net.  Joe (much to Petes disappointment as he hates heights) managed to do all the runs including the red one which ended up very high, zipwiring down on a snowboard. By this time Pete had had enough, when Joe asked to do the black run the answer was a resounding NO ! 2 1/2 hours up in the trees was enough for him, he was petrified for a lot of the time - thats what I call a dedicated dad !!  I meanwhile supervised from ground level :)

So after a days travelling we are home safe and well, all pretty tired. I have noticed the boys tics are pretty constant today, down to tiredness I think. 

We have this week to prepare our final bits for secondary next week. Then the appointments start again. OT, Hearing assessment for the hyper sensitivity to noise.  Mouthsplint dentist to start again from scratch as they are still not working as we had all hoped.  And so it all begins ......

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.