another little poem by me

The teenage years

As they grow from toddler to teen

From fresh little faces to the great unclean

You realise how the years have flown

Your cute little child has suddenly grown.

From sitting in the bath and playing with toys

You have to nag them to shower – is that just boys?

You can’t understand them when they speak

You ask them to repeat it and get a lot of cheek

With fluffy hair on the upper lip, you daren’t enter their bedroom

It’s a tip !!!!

With clothes strewn around and plates on the floor, I’m no longer allowed in unless I knock on the door.

On the computer for hour upon hour

Don’t you have homework to do ? I say, ignoring the glower.

I would give anything to go back in time

To spend a day with those boys of mine,

As babies, as toddlers as sweet little boys

I would spend more time with them playing with toys.

I would forget the cleaning the washing of clothes and play this little piggy with their cute little toes.

I would ignore the tedious chores to be done,

I would simply sit down with them and have some fun.

3 months on - yes it was the start of a new wave of tics :(

So here we are 17th June, 5 weeks left of year 8.
School are still being as supportive, flexible, creative as they can be.
Unfortunately due to this recent wax in tics the boys have missed a lot of school. Even when they have been there they have not been able to achieve very much.

This condition is so cruel in so many ways.  Not only do they have to deal with being very different outwardly to their peers but they also have to deal with the roller coaster of the tics.  When they are in a waning period they start to build confidence by doing more at school, getting into some lessons with their tutor groups, joining in more with friends at home and just simply being more active.  Then the tics kick in again and its 1 step forward 3 steps back continuously.  I worry now that as young teenagers this is going to affect their self esteem more and more.  They simply cannot do what a lot of the other kids are doing.  They don't have the stamina or fitness levels to keep up with them.  The medication and constant ticcing makes them exceptionally tired.  They get quite insecure and emotional during these periods.  They rely heavily on me to remind them of simple tasks because although they are bright boys when the tics are heightened they seem to lose the ability to process information as they would do normally.  They have the memory of a goldfish. 

We are also dealing with puberty and simply being teenagers trying to make their mark but I worry they are going to be left behind by their local friends very soon.  Im not sure where that is going to leave them.  They have a couple of friends from school but don't show much interest in meeting up with them outside of school. They rely heavily on their local primary school friends.

For us as parents its very very difficult, watching your child struggle daily.  Lying awake until gone midnight because the tics keep them awake.  Realising that the next morning to stand half a chance of coping at school they need to sleep in which takes away half the morning.
We have to balance helping them cope with pushing in certain situations because we have to prepare them for the future and they have to realise they cant opt out of everything because of their tics. This is the most difficult thing.

Unfortunately they have become to rely heavily on their computers for their entertainment. It doesn't help that one of their main friends is also obsessed with computer games and so getting them outside is a nightmare.  The summer holidays is going to be difficult because I know I am going to have to put my foot down on how long they can be on their computers each day but I wonder just what else they can do at this age given they are not sporty, they are not the kind of kids to hang around town (and I wouldn't let them anyway !) they don't have the confidence to go to clubs.

For me personally Im finding the last 7 years of stress really taking its toll. My tolerance levels are zero - I go from calm to raging in seconds.  I feel sometimes on the verge of panic attack and on the verge of tears at the drop of a hat. There is no help out there for us mums and dads with children of tourettes. I had two professionals over the last few years promising to put me in touch with an agency that can give me some stress counselling but they never came up with it. 

There are the support groups with Tourettes action but to be honest I am sick and tired of talking about it and don't really want to do that.  The boys don't show any interest in meeting other kids with TS either.  I feel it is already all consuming that I don't want my social life taken up with it as well.
Next year we have options to consider. I feel we will need to review this early in the year and be sensible about the remaining school year. I don't see the point in them continuing to struggle with subjects they have no intention of taking when they are behind in the ones they do want to take. I feel they will need to have extra tuition in the subjects they want to do and drop the others early.  Otherwise they may lose out when applying for their options due to not being up to date with the work etc. 

We have two wonderful caring, handsome boys who are developing a very good understanding of other peoples differences and are tolerant to others. For that we should be very grateful. So many kids of their age think of nothing but themselves.  They are polite and friendly. I would just like whoever or whatever it is out there to give them a break. They really, really deserve a break. They deserve to be able to go to bed and go to sleep without the tics. They deserve to be able to get up in the morning and not take 3 hours to get sorted and get to school. They deserve to not be stressed at by me !! Joe deserves to be able to go to cricket club more than twice and to be able to play in the team he was heading for.   They deserve so much more than what is constantly coming their way and knocking them back time and time again.

Hope this is not the start of tic increase or is it something else??.......

A short post as I am desperately hoping this is not a new wave of tics on the way.

Or could it be a reaction to something they have not had in a while ..... aspartame !?!?!?

We went out to tea yesterday and the boys had refill pepsi. Now normal pepsi does not have aspartame. But the drinks the boys had were the ones you pour yourself and they are the ones that are mixed with the syrup and fizzy water(or whatever it is). I have to wonder now if the right stuff was in the one labeled Pepsi? Had the diet crap been put in by mistake?

Joe woke at around midnight with a nose bleed, and unfortunately his tics started up due to irritation from a sore lip. So he took a while getting back to sleep. Random nose bleeds is one of the suggested side effects of aspartame.

Ben then woke up at 4am with tics and was still ticcing at 7.30 having had no further sleep. This has never happened before. After drinking his first glass of fizzy crap he flet distinctly unwell and was unable to eat his food.

Very intrigued now ...................

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.