Still wearing the mouthsplints almost constantly, mornings seeeeem slighly calmer but difficult to say. Jury is out until we have consistently worn it for a few more weeks. Jan - March will be the time when we can really see if it is helping as this is when the tics are at their worst.
Boys have missed a couple of days of school due to severe persistent tics. Joe has had a couple of very difficult mornings but we have baked cakes and cookies as a calmer and he has got to school later in the morning taking in some goodies with him. I think the LSAs are enjoying the homemade produce.
One day we had 5 trips to school ! A bit more time consuming than at primary which was just across the road !
Poor Ben strained his back last week having tics at school and the last two nights bedtime tic attacks have taken their toll. We ended up at A&E last night with him because he was very distressed and the tics 'attack' the area that is strained. We have seen this with Joes calf and ankle tic. Such a cruel disorder, its so awful to watch and there is absolutely nothing you can do except try to distract, try calming measures. The doctor said he had strained some muscles which he needs to rest. No lasting damage but he has been prescribed a stronger pain killer to use alongside Calpol in an attempt to control the pain and get the tics to LEAVE HIM ALONE !!!!
Only admiration for school, constant regular communication from tutors, LSAs, head of year. As a result of this the boys remain feeling safe and secure and have triumphed. They are managing to keep on top of homework which we though could be an issue. Ben had a high grade in a science assessment and Joe top of his class in maths. This despite having missed so much school in the last 4 years. Proof that these boys are determined and want to learn despite so many difficulties.
I would like to give a mention to Jamie a TS friend of Joe and Ben who has had an extremely difficult time over the last few months. He has been in a wheelchair and now the tics are affecting his bladder. He is another bright, friendly positive smiley boy - well done Jamie keep smiling. Lots of admiration to Rachel his mum whos time is taken up phoning all the professional services that somehow dont talk to each other and co-ordinate things. Such a stressful time, but admiration for Jamies school who are being extremely supportive.
We have examples here of two schools who are going the extra mile for these children. Thank you, thank you, thank you. :)
Wednesday 19 October 2011
Thursday 6 October 2011
Mornings in the ticcy household :)
Ok, boys tics increasing mornings beginning to be veeerrrry stressful !
Not every day is the same which makes it worse because you never know what is coming ! We are treading on eggshells until we get to school.
Ben currently has problems lying his head down at night. He cannot stand the feel of his sheet on his head, we tried a velvet pillow ok for a while, not any more. Covered the pillow with a towel, nope. Fleecy blanket ? Nope. Dressing gown, yep ok thatll do then until his tics get used to it and wont allow him to put his head on it. Triggers severe vocal tics.
He is waking up in the morning shouting, yes shouting. Tics as soon as the poor kid opens his eyes. Shouts are so loud Im seriously considering wearing his ear defenders.
Joes tics also on the increase, yesterday couldnt wear his school shirt tucked in, couldnt do the top button up and couldnt wear his tie. This really distressed him as he wants so much to fit in and be 'good'. He is frightened he will get into trouble despite being told its ok. As a consequence of this in the mornings, his tics are setting off. Again very vocal, shouts, rada rada.
Breakfast in our house is not a calm affair as you can imagine - or can you?
Im not sure anyone can imagine or begin to understand it if they havent lived it.
We then attempt to get in the car - can I drive with two ticcing children shouting their heads off ? I have to - there is no option. All this before 8am.
This is what our mornings are like at the moment, welcome to our world.
I see all the kids walking to school laughing, jostling each other, having a really nice time. It makes me very sad for them, they are missing out on so much. Yet despite this they continue to smile, continue to join in lessons and remain positive.
I was told today that Joe was really ticcy in maths and the LSA really felt he should have a break but he refused to leave because he loves it so much. Well done Joe - very proud.
Ben had a note written in his home school book that despite the difficult week he had last week, he remained smiley, positive and polite. Well done Ben - very proud.
Mouthsplints? Well we are still seeing a little difference. Bens severe vocal tics are normally accompanied by severe body tics, thrashing around. This doesnt seem to be happening, its just mainly vocal.
Joe cannot wear his at the moment due to it rubbing so he has gone on a whistlestop tour of Torquay today to get it sorted. Evidently he couldnt walk at all without kicking his calf severely on the way and his dad had to give him a shoulder carry. However, wearing the splint on the way out, he has walked to the station. He is kicking his leg but not as hard or severe. So maybe just maybe ......... Im not religious but I might have to start praying :)
Not every day is the same which makes it worse because you never know what is coming ! We are treading on eggshells until we get to school.
Ben currently has problems lying his head down at night. He cannot stand the feel of his sheet on his head, we tried a velvet pillow ok for a while, not any more. Covered the pillow with a towel, nope. Fleecy blanket ? Nope. Dressing gown, yep ok thatll do then until his tics get used to it and wont allow him to put his head on it. Triggers severe vocal tics.
He is waking up in the morning shouting, yes shouting. Tics as soon as the poor kid opens his eyes. Shouts are so loud Im seriously considering wearing his ear defenders.
Joes tics also on the increase, yesterday couldnt wear his school shirt tucked in, couldnt do the top button up and couldnt wear his tie. This really distressed him as he wants so much to fit in and be 'good'. He is frightened he will get into trouble despite being told its ok. As a consequence of this in the mornings, his tics are setting off. Again very vocal, shouts, rada rada.
Breakfast in our house is not a calm affair as you can imagine - or can you?
Im not sure anyone can imagine or begin to understand it if they havent lived it.
We then attempt to get in the car - can I drive with two ticcing children shouting their heads off ? I have to - there is no option. All this before 8am.
This is what our mornings are like at the moment, welcome to our world.
I see all the kids walking to school laughing, jostling each other, having a really nice time. It makes me very sad for them, they are missing out on so much. Yet despite this they continue to smile, continue to join in lessons and remain positive.
I was told today that Joe was really ticcy in maths and the LSA really felt he should have a break but he refused to leave because he loves it so much. Well done Joe - very proud.
Ben had a note written in his home school book that despite the difficult week he had last week, he remained smiley, positive and polite. Well done Ben - very proud.
Mouthsplints? Well we are still seeing a little difference. Bens severe vocal tics are normally accompanied by severe body tics, thrashing around. This doesnt seem to be happening, its just mainly vocal.
Joe cannot wear his at the moment due to it rubbing so he has gone on a whistlestop tour of Torquay today to get it sorted. Evidently he couldnt walk at all without kicking his calf severely on the way and his dad had to give him a shoulder carry. However, wearing the splint on the way out, he has walked to the station. He is kicking his leg but not as hard or severe. So maybe just maybe ......... Im not religious but I might have to start praying :)
Monday 26 September 2011
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.
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.
Thursday 22 September 2011
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
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
Tuesday 13 September 2011
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 !!
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 !!
Thursday 8 September 2011
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.
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.
Monday 5 September 2011
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.
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.
Saturday 27 August 2011
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 ......
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 ......
Tuesday 26 July 2011
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.
Saturday 23 July 2011
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.
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.
Monday 11 July 2011
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.
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.
Friday 8 July 2011
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.
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.
Monday 27 June 2011
Still going well
Things are still going well for Joe and Ben at school, despite still having tics daily which take them out of the class at times, they are managing to enjoy school and remain there for the whole day. This is showing in their confidence and their determination in the mornings to get to school, even if they are feeling ticcy. In the past it would have been very difficult to get them there if the day started badly. So nice for them to be involved in daily school life. They have managed a concert at a secondary school walking there and back which would not have been possible a few months ago.
Both boys have received their mouthsplints which is part of a trial but unfortunately they still dont seem to be doing anything. Nothing like the results we saw in the surgery so guess its another trip to Torquay to get them checked out. I am hoping they are not fitting correctly - as then we still have hope that we can get the results we saw a few weeks ago.
Secondary school are being fantastic. We had a short visit after school the other day, boys wandered around with map for 20 mins to get their bearings. They were given blazers to try on which they enjoyed so we know what size to buy now ! I have learned that 4 TAs will attend our primary school for 3 days to shadow the existing TAs and get to know Joe and Ben. This is fantastic news and we are hoping this can happen before their day visit on the 7th as it would help their anxiety to know a couple of faces. Joe was very upset at having to change school choice at the last minute and although he is not ecstatic he is definately coming round and does not comment when the school is mentioned. He is looking forward to joining the cricket and tennis after school clubs. Ben accepted it from the beginning but did comment that it might take them a while to make friends as they have tourettes. When asked why that should be he said he and Joe dont know how to act around people that dont know them. Bless.
The other school that were so rude and offputting are performing a show which the year 6 kids have been invited to. Ben said he didnt want to go, didnt want to set foot in it as he didnt want to see the headteacher who has been so mean. He has a point, dont think I would want to go either. However I explained that the whole year group are going so he will be fine.
Today they are setting up a little stall outside school at 3.30 to sell lemonade, homemade cakes (made by Joe last night) and ice pops. Very enterprising :) Dell boy and Rodney spring to mind !!
Both boys have received their mouthsplints which is part of a trial but unfortunately they still dont seem to be doing anything. Nothing like the results we saw in the surgery so guess its another trip to Torquay to get them checked out. I am hoping they are not fitting correctly - as then we still have hope that we can get the results we saw a few weeks ago.
Secondary school are being fantastic. We had a short visit after school the other day, boys wandered around with map for 20 mins to get their bearings. They were given blazers to try on which they enjoyed so we know what size to buy now ! I have learned that 4 TAs will attend our primary school for 3 days to shadow the existing TAs and get to know Joe and Ben. This is fantastic news and we are hoping this can happen before their day visit on the 7th as it would help their anxiety to know a couple of faces. Joe was very upset at having to change school choice at the last minute and although he is not ecstatic he is definately coming round and does not comment when the school is mentioned. He is looking forward to joining the cricket and tennis after school clubs. Ben accepted it from the beginning but did comment that it might take them a while to make friends as they have tourettes. When asked why that should be he said he and Joe dont know how to act around people that dont know them. Bless.
The other school that were so rude and offputting are performing a show which the year 6 kids have been invited to. Ben said he didnt want to go, didnt want to set foot in it as he didnt want to see the headteacher who has been so mean. He has a point, dont think I would want to go either. However I explained that the whole year group are going so he will be fine.
Today they are setting up a little stall outside school at 3.30 to sell lemonade, homemade cakes (made by Joe last night) and ice pops. Very enterprising :) Dell boy and Rodney spring to mind !!
Thursday 16 June 2011
time to move on
At last we have a school for the boys, a school that truly believe 'every child matters', a school that have an ethos of caring which comes across in all the staff we have met so far.
Its a short distance away by car, and the boys will have to make some new friends but the contrast between this school and the previous one is huge.
We can at last start to move forward and it is such a relief. Thank god there are some people in the education system that are not just interested in results and their ofsted report, people that are still truly interested in the children. Thank you Edgbarrow, we look forward to our boys attending your school.
Yesterday Joe managed to spend a whole day at the Kwik cricket festival and played in the schools B team. All three teams got into the finals - great day. Sadly Joes team lost by 2 runs but he was only slightly disappointed. For Joe this was a huge achievement - 3 months ago we would not have believed this day was possible his tics were so bad, and confidence so low. He went to school this morning feeling extremely tired and ticcy but very proudly wearing his silver medal. He bowled really well getting several wickets for his team. Couldnt help but write him a little poem.
Its a short distance away by car, and the boys will have to make some new friends but the contrast between this school and the previous one is huge.
We can at last start to move forward and it is such a relief. Thank god there are some people in the education system that are not just interested in results and their ofsted report, people that are still truly interested in the children. Thank you Edgbarrow, we look forward to our boys attending your school.
Yesterday Joe managed to spend a whole day at the Kwik cricket festival and played in the schools B team. All three teams got into the finals - great day. Sadly Joes team lost by 2 runs but he was only slightly disappointed. For Joe this was a huge achievement - 3 months ago we would not have believed this day was possible his tics were so bad, and confidence so low. He went to school this morning feeling extremely tired and ticcy but very proudly wearing his silver medal. He bowled really well getting several wickets for his team. Couldnt help but write him a little poem.
It brought me great joy to see my boy
Representing his school at cricket
He fielded ok and batted ok but
Bowled well taking many a wicket
To the final they went, good wishes we sent
Despite being cold and wet
They did their best and needed a rest
The runs they didn’t quite get
A little bit sad, but still very glad
A silver medal he would get
It would’ve been nice to win he said with a grin
He was so happy - no reason to fret
He was up this morning, so tired and yawning
But off to school he sped
Ticcing away and wanting to stay
Im looking forward to PE he said !
So so nice to post something happy and positive on here. Lets hope this continues.
Wednesday 8 June 2011
Monday 6 June 2011
and it gets even better
Requested some follow up from SEN dept today so we can make an informed decision following our meeting at Edgbarrow school tomorrow. They have spoken to the Deputy head of 'said' school and he has said he will come back with his view on the report and what they can do around space issues at the end of the week. I have requested SEN dept go back to him and say that from our point of view as parents this is not acceptable.
Lets do a simple timeline for this shall we?
November 2010 Applied for place - application is sent to school with copy of statement and accompanying reports all of which state the boys need a small comfortable area to retreat to together with all the other issues they face on a daily basis.
Feb 2011 Granted place, statement updated to show secondary school.
March 25th meeting held with head teacher where she voiced her concerns around space issues (among many other concerns !!!
April 20th Meeting with SEN Manager - who stated they would have to do an environmental audit to review their current use of space.
April 27th Annual statement review held at primary school with many professionals including 2 representatives from secondary school. Again it was stated that an environmental audit would have to take place.
May 13th Environmental Audit completed
3 weeks later (all but one day to be fair to them !) report was received.
Deputy head contacted for his views - no response.
Deputy head contacted 6th June for response to the report and what discussions they have had.
Told SEN dept he would get back to them by the end of the week
Acceptable? !! NO NO NO - Not in anyones imagination.
This school, knowing they have given places to my boys have done absolutely nothing between 25th March and 6th June around the space issue and the many other concerns they raised. They have not communicated with us as a family following the meeting where they raised so many concerns. They have clearly not looked into how they will accommodate these boys even though they have places and statement requirements. They are clearly not going to. I think they are playing a strategic game, the longer they hold off the more likely we are to go elsewhere.
If I had not escalated this to get the SEN manager on board working very hard for us what would the school have done? Nothing, Sweet Nothing. I truly believe our boys would have turned up on day one and been a compete inconvenience to them because they dont fall into their strict processes and procedures. I think they would have winged it and hoped for the best. This the supposedly best school in Bracknell ? This from a Christian school which claim to be inclusive? Claim to rise to a challenge? This challenge is
clearly one to difficult for them to rise to. Shame on you.
Lets do a simple timeline for this shall we?
November 2010 Applied for place - application is sent to school with copy of statement and accompanying reports all of which state the boys need a small comfortable area to retreat to together with all the other issues they face on a daily basis.
Feb 2011 Granted place, statement updated to show secondary school.
March 25th meeting held with head teacher where she voiced her concerns around space issues (among many other concerns !!!
April 20th Meeting with SEN Manager - who stated they would have to do an environmental audit to review their current use of space.
April 27th Annual statement review held at primary school with many professionals including 2 representatives from secondary school. Again it was stated that an environmental audit would have to take place.
May 13th Environmental Audit completed
3 weeks later (all but one day to be fair to them !) report was received.
Deputy head contacted for his views - no response.
Deputy head contacted 6th June for response to the report and what discussions they have had.
Told SEN dept he would get back to them by the end of the week
Acceptable? !! NO NO NO - Not in anyones imagination.
This school, knowing they have given places to my boys have done absolutely nothing between 25th March and 6th June around the space issue and the many other concerns they raised. They have not communicated with us as a family following the meeting where they raised so many concerns. They have clearly not looked into how they will accommodate these boys even though they have places and statement requirements. They are clearly not going to. I think they are playing a strategic game, the longer they hold off the more likely we are to go elsewhere.
If I had not escalated this to get the SEN manager on board working very hard for us what would the school have done? Nothing, Sweet Nothing. I truly believe our boys would have turned up on day one and been a compete inconvenience to them because they dont fall into their strict processes and procedures. I think they would have winged it and hoped for the best. This the supposedly best school in Bracknell ? This from a Christian school which claim to be inclusive? Claim to rise to a challenge? This challenge is
clearly one to difficult for them to rise to. Shame on you.
Wednesday 1 June 2011
Oh it just gets better !!
3 weeks tomorrow and still no Environmental Audit report from SEN. Last we heard was they wanted to 'run it past' the school before sending it out to us. Mmmmmm wonder why? Well its now half term and so nothing is likely to happen. Wonder why the school did not return it the day it was sent or even the day after? Oh I know - lets let them wait longer, more likely to withdraw their places.
This audit was requested by SEN team because the school insisted they had no space to use for the boys as a calming down area. The information is needed by us to make our final decision on whether or not the school is suitable. Well it clearly isnt - I would not send the boys there now if they paid and begged me. So much for the church school being inclusive - what happened to every child matters?. Ours clearly dont matter to them and I dont believe they ever would.
update - received the report today - doesnt say anything we dont already know. Would have expected some kind of input from the SEN department as to their views on what can or cant be done with the resulting information. Guess will have to chase that too. There are a couple of rooms in an old house in the grounds of the school, used to be the headmeasters house. Evidently these rooms are used for small group teaching, exams, and for teachers to quietly plan work in when not teaching. These are the only rooms that they feel would be suitable, but are not suitable if you see what I mean. Whilst I understand the lack of space, if J&B were already at the school and developed this condition they would have to accommodate them - there would be no question - they would not suddenly be able to use the excuse of no space as they would be told in no uncertain terms 'find some' as per the disability act. No doubt the teachers would find somewhere else like the staff room to quietly plan work should J or B need to use one of the rooms. Guess thats too difficult for them to work out for themselves. Shame they are not a bit brighter, shame they cant take their blinkers off. God help any SEN child that needs support above and beyond what this school deems to be 'their way'. Its clearly their way or the highway. I thank god I will not have to deal with these morons on a frequent basis.
This audit was requested by SEN team because the school insisted they had no space to use for the boys as a calming down area. The information is needed by us to make our final decision on whether or not the school is suitable. Well it clearly isnt - I would not send the boys there now if they paid and begged me. So much for the church school being inclusive - what happened to every child matters?. Ours clearly dont matter to them and I dont believe they ever would.
update - received the report today - doesnt say anything we dont already know. Would have expected some kind of input from the SEN department as to their views on what can or cant be done with the resulting information. Guess will have to chase that too. There are a couple of rooms in an old house in the grounds of the school, used to be the headmeasters house. Evidently these rooms are used for small group teaching, exams, and for teachers to quietly plan work in when not teaching. These are the only rooms that they feel would be suitable, but are not suitable if you see what I mean. Whilst I understand the lack of space, if J&B were already at the school and developed this condition they would have to accommodate them - there would be no question - they would not suddenly be able to use the excuse of no space as they would be told in no uncertain terms 'find some' as per the disability act. No doubt the teachers would find somewhere else like the staff room to quietly plan work should J or B need to use one of the rooms. Guess thats too difficult for them to work out for themselves. Shame they are not a bit brighter, shame they cant take their blinkers off. God help any SEN child that needs support above and beyond what this school deems to be 'their way'. Its clearly their way or the highway. I thank god I will not have to deal with these morons on a frequent basis.
Tuesday 31 May 2011
for those who think Tourettes is the swearing disease !!
You should have been in our house this evening. Joe fine all day, tiredness kicked in once or twice, minor tics until I happened to make a scratching noise on some material. Whoa, nearly an hour of leg tics, shouts, hitting his head, thumping his calf and thigh, writhing on the floor and not able to stand or walk because one leg was tensing so much he couldnt bear it.
I had to piggy back my 11 year old, 6 stone boy upstairs to bed.
Swearing? from me maybe under my breath. From Joe? No
Remember only 10% of people with tourettes have coprolalia - yes it has a proper name.
Some people find Tourettes amusing - it is not - it is extremely distressing for those concerned and for friends and family watching on as there is nothing we can do to help.
So next time a comedian makes fun of tourettes, dont laugh - spare all the touretters out there a thought !!
I had to piggy back my 11 year old, 6 stone boy upstairs to bed.
Swearing? from me maybe under my breath. From Joe? No
Remember only 10% of people with tourettes have coprolalia - yes it has a proper name.
Some people find Tourettes amusing - it is not - it is extremely distressing for those concerned and for friends and family watching on as there is nothing we can do to help.
So next time a comedian makes fun of tourettes, dont laugh - spare all the touretters out there a thought !!
Monday 30 May 2011
Something in it?
Boys waiting patiently for their mouthsplints to arrive - hopefully Wednesday. Will be an interesting few days. Surprisingly Ben has had a week virtually tic free until Saturday night/sunday morning when they seemed to come back with a vengeance. Thankfully they didnt last long. Lots of little facial tics. Joe on the other hand is still struggling on and off all day. Not stopping them going out and about with their friends though, lots of cricket being played down the park :)
A mum contacted me via the Tourettes Action Website and said her little girl puts her fingers in the back of her mouth when she is having bad tics and she says it makes her feel better and helps. Very interesting as this provides the same function as the mouthsplint would.
Another mum contacted me also, her little boy has recently seen the same dentist and they saw really positive results the same as we did. Looking forward to seeing how it goes in the next few days.
A mum contacted me via the Tourettes Action Website and said her little girl puts her fingers in the back of her mouth when she is having bad tics and she says it makes her feel better and helps. Very interesting as this provides the same function as the mouthsplint would.
Another mum contacted me also, her little boy has recently seen the same dentist and they saw really positive results the same as we did. Looking forward to seeing how it goes in the next few days.
Tuesday 24 May 2011
God I am so mad arrghhhhhhhh
My two little lads are the only children in year six at their school that are not definate about the secondary school they are going to.
This all because we chose what we thought was the best school, lots of people telling us that they would be very well cared for once they were in the school despite the cold outward appearance and 'closed shop' nature of said school.
Following a meeting with the headteacher, being left bewildered and shocked at her dickensian attitude we were assured that the SEN department could work with her and sort things out. The meeting was held on the 25th March. To date we have had no further communication from the school despite having a place there. There was great concern over space to provide an area for the boys to retreat to for calming down periods - this we understood. SEN department told the school they would do an environmental audit - this was carried out on the 12th May. I was assured I would receive a copy of this report. Tail end of last week I phoned asking where it was, to be told that the person conducting the audit had done so but was then not in the office for all of last week as she works on a contract basis. I was very annoyed given that this is crucial to our final decision. I was assured I would get it today - I phoned to see if I could collect it and was told said person had phoned in sick. I questioned why this person could not have typed up the report and emailed it into the office, why does she have to be in the office to do the report in this wonderful age of technology?
I have two vulnerable children waiting to find out what secondary school they will go to. One of them has had a couple of meltdowns over it crying and getting very upset because he is unsure what is happening. They are both diagnosed with anxiety as well as TS and they are adding to anxiety as each day passes. We were told in February we had a place and due to the stinking attitude of the arrogant school we chose we are left in this position.
How dare we be treated like this, I thought this whole process was to help protect us from exactly what is happening.
How can this be acceptable in anyones imagination?
Why did the SEN department get this particular person to do the audit knowing she was not going to be able to provide the report for a further week? Local to the school they should have got another member of the team to carry it out.
If this was a business offering a service to paying customers this would not be acceptable. Why is it acceptable in local government?
Once we have a place at a school and transition starts I will be taking this further, I am not going to let this go - i am so mad I am shaking
This all because we chose what we thought was the best school, lots of people telling us that they would be very well cared for once they were in the school despite the cold outward appearance and 'closed shop' nature of said school.
Following a meeting with the headteacher, being left bewildered and shocked at her dickensian attitude we were assured that the SEN department could work with her and sort things out. The meeting was held on the 25th March. To date we have had no further communication from the school despite having a place there. There was great concern over space to provide an area for the boys to retreat to for calming down periods - this we understood. SEN department told the school they would do an environmental audit - this was carried out on the 12th May. I was assured I would receive a copy of this report. Tail end of last week I phoned asking where it was, to be told that the person conducting the audit had done so but was then not in the office for all of last week as she works on a contract basis. I was very annoyed given that this is crucial to our final decision. I was assured I would get it today - I phoned to see if I could collect it and was told said person had phoned in sick. I questioned why this person could not have typed up the report and emailed it into the office, why does she have to be in the office to do the report in this wonderful age of technology?
I have two vulnerable children waiting to find out what secondary school they will go to. One of them has had a couple of meltdowns over it crying and getting very upset because he is unsure what is happening. They are both diagnosed with anxiety as well as TS and they are adding to anxiety as each day passes. We were told in February we had a place and due to the stinking attitude of the arrogant school we chose we are left in this position.
How dare we be treated like this, I thought this whole process was to help protect us from exactly what is happening.
How can this be acceptable in anyones imagination?
Why did the SEN department get this particular person to do the audit knowing she was not going to be able to provide the report for a further week? Local to the school they should have got another member of the team to carry it out.
If this was a business offering a service to paying customers this would not be acceptable. Why is it acceptable in local government?
Once we have a place at a school and transition starts I will be taking this further, I am not going to let this go - i am so mad I am shaking
Monday 23 May 2011
Another poem - by me :)
Our 12 week scan was such a surprise
‘Two heartbeats’ she said a smile in her eyes
Husband was shocked he went quite grey
We were having twins we learned on that day
A trip to the supermarket would take us a while
People stopped to show the boys a smile
With huge blue eyes and a mass of dark hair
Identical they were people stopped to stare
At four and three quarters from nursery they parted
Whitegrove Primary School journey they started
With photos taken, and some anticipation
They entered their class in reception
Seven years on they are about to up sticks
They are in their final weeks of enjoying year 6
There have been many ups and downs throughout the years
Their TS has caused us all lots of tears
But that’s just a small part of our wonderful sons
They are happy and funny and we love them tons
Its time to move on and start a new era
Secondary school time is getting nearer
Placement received we were happy with our choice
A meeting with the head, the deputy had no voice !
She was negative and unhelpful we left there reeling
We left unhappy and with a horrible feeling
She had so many concerns but no positives to feedback
Inclusiveness and compassion there was considerable lack
We could not put our boys in that environment
Where the voice at the top had so little sentiment
We are in June now and looking further away
At a school where flexibility may extend their day
They were welcoming and warm and showed no concern
At the support the boys would need, they are willing to learn
The boys are unsettled as none of their friends will attend
But I have assured them it will all come right in the end.
Friendships will be formed during the first day
Old friendships that are true are likely to stay
Scratch the surface of the first school and see
Not all is what it appears to be
Most children will do very well there but then,
Unlike my boys they are not SEN
for any of you that know me reading this poem, schools are not definate yet and the boys think they are going to the school of our choice. Pete and I are certain though, that unless anything major happens in the next two weeks its unlikely we will change our minds. We then have to sell it in a positive way to the boys. :(
Saturday 21 May 2011
For Kate
An uneventful but very positive week, boys managed school full time Ben the best day for months on Friday. Poor Joe struggled most of the week but battled through. He has been picked for the cricket training squad and unfortunately his leg and ankle tics are back. He could only do half of the PE lesson on Friday and was pretty disappointed. Dont know if its the extra activity creating the tics, or if the tics are just relentless and cruel as they can be. Attacking the part of the body you less want it to. Praying it doesnt affect him enough to stop him from doing it :(
Once we know we have a place at a secondary school I will post about our negative experience at the hands of the headteacher of the so called best school in the borough. Look beneath the surface people, things are not always what they seem to be !!!
Watching the boys today with their friends I can see how the tiredness affects their lives. After cycling round this morning their friends were still raring to go. Boys were exhausted.
Praying the mouthsplint will come soon and if we see good results perhaps we can reduce the meds a little to help combat the tiredness.
Not long until end of year and era for the boys, wondering if the emotions will make the tics worse. We will see.
Once we know we have a place at a secondary school I will post about our negative experience at the hands of the headteacher of the so called best school in the borough. Look beneath the surface people, things are not always what they seem to be !!!
Watching the boys today with their friends I can see how the tiredness affects their lives. After cycling round this morning their friends were still raring to go. Boys were exhausted.
Praying the mouthsplint will come soon and if we see good results perhaps we can reduce the meds a little to help combat the tiredness.
Not long until end of year and era for the boys, wondering if the emotions will make the tics worse. We will see.
Sunday 15 May 2011
Mouth Splint
We spent a very long weekend in Torquay at a Dentist as part of a trial researching the TMD mouthsplint to see if it can help tics.
The boys were extremely good sitting in the dentists for 3 hours on Saturday and nearly 6 hours on Sunday.
Xrays and impressions were made Saturday, from this a device was made which enabled him to build up and alter parts of the mould to alter the 'bite'. Wont go into technicalities (because I cant remember to be honest !) but the upshot was as he got closer to the 'optimum' bite we clearly saw the tics reduce. It was amazing. At one point he wanted to go a bit further on one of the adjustments and it bought the tics back on.
I am probably not explaining my self very well but you can check out this procedure by looking at a webiste of Dr Simms or Dr Stacks in the USA. There are some Youtube videos too. This shows the tics stopping as soon as the mouth splint was put in. This may make you sceptical as you watch it, however we witnessed that today ourselves.
The boys were recorded on video yesterday with very bad tics. Today they were recorded again with tics, then the temporary device was put in the mouth and the tics died down. As soon as the device was taken out the tics started up again. To be recorded they were sitting on my husbands lap, he said he could feel how tense they were without the device and how their bodies relaxed when it was put back in.
Should receive the mouthsplint in about a weeks time, then we will see if this effect lasts over time.
Watch this space, very interesting or 'freaky' as Ben put it !!
The boys were extremely good sitting in the dentists for 3 hours on Saturday and nearly 6 hours on Sunday.
Xrays and impressions were made Saturday, from this a device was made which enabled him to build up and alter parts of the mould to alter the 'bite'. Wont go into technicalities (because I cant remember to be honest !) but the upshot was as he got closer to the 'optimum' bite we clearly saw the tics reduce. It was amazing. At one point he wanted to go a bit further on one of the adjustments and it bought the tics back on.
I am probably not explaining my self very well but you can check out this procedure by looking at a webiste of Dr Simms or Dr Stacks in the USA. There are some Youtube videos too. This shows the tics stopping as soon as the mouth splint was put in. This may make you sceptical as you watch it, however we witnessed that today ourselves.
The boys were recorded on video yesterday with very bad tics. Today they were recorded again with tics, then the temporary device was put in the mouth and the tics died down. As soon as the device was taken out the tics started up again. To be recorded they were sitting on my husbands lap, he said he could feel how tense they were without the device and how their bodies relaxed when it was put back in.
Should receive the mouthsplint in about a weeks time, then we will see if this effect lasts over time.
Watch this space, very interesting or 'freaky' as Ben put it !!
Tuesday 10 May 2011
My Poem
Life was going wonderfully for my lovely boys
Then one day Ben was sitting playing with his toys
I heard a shout and went to see, wondering what on earth it could be
I watched him playing, sitting on the floor
Unaware I was standing silently by the door
The shouts continued every now and then
He was only six my lovely little Ben.
From shouts to twirling and tripping himself over
Huge problems with shoes, trousers and pullover
This was all very scarey and very new to us, yet I knew in my heart I was sure what it was
Toe tapping and foot stuttering hampered his walking
Stuttering also interrupted his talking
The shouts continued every now and then
He was only six my lovely little Ben
His dad and I knew as an identical twin
Joe was very likely to follow his kin
Sure enough a few months after, Joes tics started and stopped the laughter
Writhing on the floor shouting and crying
Where do we go from here? we said sighing
This is just dreadful, what a blow
He was only six my lovely little Joe
With waxing and waning we thought it had gone
Our lives lit up again the sun once again shone
Then Joe and Ben peaked just after Christmas, we really struggled, didn’t know what had hit us
We didn’t know what to do or where we could turn
It felt our family was about to crash and burn
There was so much emotion within our home
Is this what it is like, living with Tourette Syndrome?
A few years on there are good days and bad
At times we can still get really sad
In the beginning you think you will never cope, but love and understanding gives you hope
The more informed and knowledgeable you become
The more understanding you can be as a mum
Bringing up boys is difficult at best
To live with TS as well is the ultimate test
Hope you like it :)
Friday 6 May 2011
Even better
slippers on after tea, solved, no piggy backs required.
Even better than that, both boys on a sleepover, have fun today boys, lets hope you dont pay for it tomorrow :(
Even better than that, both boys on a sleepover, have fun today boys, lets hope you dont pay for it tomorrow :(
Wednesday 4 May 2011
Ben 1 - Tics 0
Ben has been having night time tics recently which seem to be triggered as he walks past the sofa by the lounge door. He identified tonight that it is his heel tic that triggers off the really bad tics when he walks on the carpet. so I piggy backed him upstairs (all 6 stone of him !) and managed to dump him onto his bed where he got changed into his pj's. He then wrapped his foot in his dressing gown so it didnt rub on his quilt because the feel and the sound also triggers his tics. Complicated? yes, Tic Fee YESSSSSSS........ result.
Gives you an idea just how complex this condition is at times and an insight into what we have to do to trick the tics. Ben 1 tics 0
Gives you an idea just how complex this condition is at times and an insight into what we have to do to trick the tics. Ben 1 tics 0
Lets hope the week continues as well as it started.
After school putting in place some very creative activities for the boys to access we have had a very successful couple of days.
Ben had a tutor this morning for maths and despite never having met him before managed a full 1/2 hour of full on concentration. Then went to school with a few tics which on other days he may have shown some reluctance to do. All down to looking forward to what he is doing today and knowing he isnt just expected to try to 'slot' back into class, going into something half way through and feeling out of his depth.
If only school could have been more flexible and creative in the past we may not have missed quite so much. However time to move forwards and not look back - we have transition to think of and it will be interesting to see how flexible and creative secondary will be able to be. mmmmmm........
Ben had a tutor this morning for maths and despite never having met him before managed a full 1/2 hour of full on concentration. Then went to school with a few tics which on other days he may have shown some reluctance to do. All down to looking forward to what he is doing today and knowing he isnt just expected to try to 'slot' back into class, going into something half way through and feeling out of his depth.
If only school could have been more flexible and creative in the past we may not have missed quite so much. However time to move forwards and not look back - we have transition to think of and it will be interesting to see how flexible and creative secondary will be able to be. mmmmmm........
Thursday 28 April 2011
Full day at school
Having agreed yesterday that school would do their best to keep the boys in school and get them through their tics we set off this morning, rucksacks full of lunch, snacks, drinks, sunglasses.
yes sunglasses - part of the agreement is that the boys can work outside in the new gardens and environmental areas that are being created. We got to school and the teachers had kindly purchased some gardening stuff for the boys, watering cans, gloves, trowel, seeds, new pots etc. Some laminated cards with details of daily jobs for the boys to pick out what they could do first thing in the mornings. Slug hunting was a favourite with Ben !
I went off and purchased some picnic blankets so if they work outside or have lunch they have something nice to sit on.
Success! Joe had a pretty good day. Ben had 2 bad tic attacks but got through them, bit tricky but teacher and TA looked after him between them. well done everyone - lets hope we can carry this on so the boys have a really enjoyable last term at primary.
yes sunglasses - part of the agreement is that the boys can work outside in the new gardens and environmental areas that are being created. We got to school and the teachers had kindly purchased some gardening stuff for the boys, watering cans, gloves, trowel, seeds, new pots etc. Some laminated cards with details of daily jobs for the boys to pick out what they could do first thing in the mornings. Slug hunting was a favourite with Ben !
I went off and purchased some picnic blankets so if they work outside or have lunch they have something nice to sit on.
Success! Joe had a pretty good day. Ben had 2 bad tic attacks but got through them, bit tricky but teacher and TA looked after him between them. well done everyone - lets hope we can carry this on so the boys have a really enjoyable last term at primary.
Wednesday 27 April 2011
How proud were we !!
Annual statement review meeting today at school, Ben came in for a few minutes and answered a few questions, surrounded by about 12 adults some of which he had never met before. Lots of tics during the morning (no he didnt know he was going to do this). Spoke to him about it and he agreed to come, tics all the way over to school and waiting in reception, during the meeting? none, how scary must that have been? in yet he did it tic free.
Joe came into the meeting too, having been at school his lovely TA talked him through it and came in with him. He was nervous so had a few tics but remained smiley and answered some questions quite confidently.
Our fantastic boys never cease to amaze us, coping with this cruel, unpredictable condition, suffering often with very severe full body tics, they bounce back time and time again.
Where do they get this resilience from? Another lovely mum said her daughter often copes with it better than she does. I would agree, often I am at breaking point, but the boys bounce back time and time again.
Well done Joe and Ben you are truly amazing.
Joe came into the meeting too, having been at school his lovely TA talked him through it and came in with him. He was nervous so had a few tics but remained smiley and answered some questions quite confidently.
Our fantastic boys never cease to amaze us, coping with this cruel, unpredictable condition, suffering often with very severe full body tics, they bounce back time and time again.
Where do they get this resilience from? Another lovely mum said her daughter often copes with it better than she does. I would agree, often I am at breaking point, but the boys bounce back time and time again.
Well done Joe and Ben you are truly amazing.
Tuesday 26 April 2011
Poor Joe
Self esteem, confidence building horse riding session today. Ben did very well despite a few tics. Poor Joe had major tics after the grooming and was unable to ride at all. Very upset and disappointed. Luckily Teresa the girl that runs the sessions is very astute and has suggested riding first next week and grooming last.
Life can be so disappointing for people with Tourettes as the tics can come on at any time and stop the most wonderful of activities. Its not just school it gets in the way of - its life itself some days. :(
Tutor this afternoon, Joe worked through a lot of tics - well done Joe. Ben had really bad tics for about 20 mins and then managed to calm down enough to do a good 40 minutes - well done Ben. We would not have had the same outcome with school unfortunately.
Life can be so disappointing for people with Tourettes as the tics can come on at any time and stop the most wonderful of activities. Its not just school it gets in the way of - its life itself some days. :(
Tutor this afternoon, Joe worked through a lot of tics - well done Joe. Ben had really bad tics for about 20 mins and then managed to calm down enough to do a good 40 minutes - well done Ben. We would not have had the same outcome with school unfortunately.
Monday 25 April 2011
another good day
Easter Sunday yesterday, well what can I say, chocolate for breakfast - isnt that what its all about?
A good day for the boys, lots of playing with friends, out and about in the sun. no pressure, no school, no tics. (well just very minor ones)
Up this morning and Ben however is having lots of head and vocal tics, no idea what has triggered it but hoping it will calm down quickly. Another sunny day, anyone for tennis maybe? spot of Geocaching with dad? (probably not :) ) Bikes and water guns on the agenda again today I think. Lots of garden badminton and a bit of car washing too ! very active.
Another funny outburst just before tea, extremely loud vocal shouting, so so loud ! thankfully didnt last too long, no apparant trigger other than just finished writing his diary for his tutor.
As I watch them now calmly watching tv, Ben lots of facial grimacing and Joe a persistent right arm tic. Not good for writing either !
A good day for the boys, lots of playing with friends, out and about in the sun. no pressure, no school, no tics. (well just very minor ones)
Up this morning and Ben however is having lots of head and vocal tics, no idea what has triggered it but hoping it will calm down quickly. Another sunny day, anyone for tennis maybe? spot of Geocaching with dad? (probably not :) ) Bikes and water guns on the agenda again today I think. Lots of garden badminton and a bit of car washing too ! very active.
Another funny outburst just before tea, extremely loud vocal shouting, so so loud ! thankfully didnt last too long, no apparant trigger other than just finished writing his diary for his tutor.
As I watch them now calmly watching tv, Ben lots of facial grimacing and Joe a persistent right arm tic. Not good for writing either !
Saturday 23 April 2011
good day today
Lovely weather, minimal tics, lots of friends to play with, Joe a bit grumpy on and off due to tiredness I think, but a bit concerned it might be the meds as beginning to see it more and more. Must keep a watch on that.
Cant escape school issues, email today about the summer term. Might join a trial for TMJ treatment along the lines of what we have tried before but without having to use the sticks. Looking into it seriously, boys seem to be up for it.
Happy Easter everyone :)
Cant escape school issues, email today about the summer term. Might join a trial for TMJ treatment along the lines of what we have tried before but without having to use the sticks. Looking into it seriously, boys seem to be up for it.
Happy Easter everyone :)
Friday 22 April 2011
oh dear
why is it that after a good day the boys generally pay for it the next?
Joe has a particularly distressing tic today which is making him thump his thigh really hard because he feels like he needs to break the bone. He feels he needs to click it to stop some discomfort and of course he cant. Very distressing, bruises only just gone from his calf muscle where he had a similar distressing tic for about 2 weeks !!
Joe has a particularly distressing tic today which is making him thump his thigh really hard because he feels like he needs to break the bone. He feels he needs to click it to stop some discomfort and of course he cant. Very distressing, bruises only just gone from his calf muscle where he had a similar distressing tic for about 2 weeks !!
Thursday 21 April 2011
what difference a day makes :)
No tutors, no school, no pressure, boys out and about on bikes pretty much all day, fishing down the local lake with a friend, cycling off to supermarket. No major tics,lots of little manageable ones which didnt get in the way of their day. So lovely to see. Even a calm night (hope Im not speaking too soon).
So nice to have a postitive day
So nice to have a postitive day
Wednesday 20 April 2011
Phew what a day. Tutor in - tics off the scale for Ben. 2 1/2 hours of full on tics shouting so loud I dont know where it comes from !! He wasnt able to do anything with the tutor at all, Joe on the other hand managed to work through a lot of his tics and managed some work. Once this was done, had about an hour before heading off to SEN pow wow. 2 hours of full on meeting, got a bit emotional, stress is really taking its toll now. Found out a few things that made us feel really angry towards the potential new school, I hope some bridges can be built in the next few weeks as we all need to be able to talk to each other. Its maddening that there is a process in place for vulnerable SEN children with the statement and getting priority choice of school, but we are still sitting here in the middle of April with a question mark over whether the boys will go to our choice of school or not. We should be able to feel as confident and secure as other parents do right now. The boys should be safe in the knowledge that the decision made was the right one and that the school will do their best for them. However they know that something is going on and that we are still looking at schools to make sure we get the right environment. This all adds to their anxiety, I would love to know how many other SEN parents have gone through the same kind of thing around transition from primary to secondary.
Tuesday 19 April 2011
Blood tests this morning as the boys have been on Aripiprizole for a year now. Very brave, worst thing was they couldnt have anything to eat after their tea last night. They were starving !!!
Went to Thorpe Park for a couple of hours afterwards, turned out to be very warm and very noisy. Ben was quite ticcy whilst we were there and was unable to go on one or two of the big rides due to the noise and the waiting in the queue in the sun. Made a decision to apply for a diability fast pass. Why not? never applied before, felt uncomfortable about it because I dont really think of tourettes as a disability but it is disabling in many ways. If Ben had a fast pass today he would have managed a couple of the rides he really wanted to go on without struggling with the tics. People always seem to glare at the people using the exit passes and you can feel them asking why what is wrong with them?? Its only fair the boys get to enjoy days out as much as any other child would. Another letter to write then.
Went to Thorpe Park for a couple of hours afterwards, turned out to be very warm and very noisy. Ben was quite ticcy whilst we were there and was unable to go on one or two of the big rides due to the noise and the waiting in the queue in the sun. Made a decision to apply for a diability fast pass. Why not? never applied before, felt uncomfortable about it because I dont really think of tourettes as a disability but it is disabling in many ways. If Ben had a fast pass today he would have managed a couple of the rides he really wanted to go on without struggling with the tics. People always seem to glare at the people using the exit passes and you can feel them asking why what is wrong with them?? Its only fair the boys get to enjoy days out as much as any other child would. Another letter to write then.
Monday 18 April 2011
Tutor arrived at 2.30 tics slowly increased as day wore on. Didnt help boys had no one to play with today so they were a bit bored, no distractions. Severe tics during start of tutoring, but hats off to Mrs Leake who persevered without batting an eyelid. Patient, calm and caring but determined to make progress at the same time. If that had happened at school today they would have ended up coming home and achieved nothing but a feeling of failure. Creative teaching and understanding the capabilities of the boys during tics helps enormously. Just goes to show they can work through them and achieve something. Well done Mrs Leake and more importantly well done Joe and Ben for keeping at it.
Now, report writing here I come (again !!).
finally finished reports at midnight - sat here wondering if I will ever have a life again outside of education issues.
Now, report writing here I come (again !!).
finally finished reports at midnight - sat here wondering if I will ever have a life again outside of education issues.
Sunday 17 April 2011
Good day, minimal tics for the boys
For us? couple of hours writing reports this afternoon, more to do this evening for the up and coming statement review !! Not happy with schools report - lots of exaggeration and reference to strategies used just in the last couple of weeks. No way a true account of the last 6 months. No reference to managing core weaknesses due to past absences and lack of support during times of absence. More of our weekend time taken up reviewing and communicating our areas of concern.
Tomorrow - tutor in da house, therefore tics in da house :(
3 more hours on review report - thats only the first report - have another one to do yet. Will start that one tomorrow. I often wonder what I did with my time before I got involved in the world of SEN. Need to sleep zzzzzzzzz
For us? couple of hours writing reports this afternoon, more to do this evening for the up and coming statement review !! Not happy with schools report - lots of exaggeration and reference to strategies used just in the last couple of weeks. No way a true account of the last 6 months. No reference to managing core weaknesses due to past absences and lack of support during times of absence. More of our weekend time taken up reviewing and communicating our areas of concern.
Tomorrow - tutor in da house, therefore tics in da house :(
3 more hours on review report - thats only the first report - have another one to do yet. Will start that one tomorrow. I often wonder what I did with my time before I got involved in the world of SEN. Need to sleep zzzzzzzzz
Saturday 16 April 2011
Introduction
As a mum of twin boys aged 11 with Tourettes I thought I would start a blog to record some of the ups and downs in the lives of a family living with Tourettes Syndrome.It is extremely difficult for the boys living with the condition and it puts a lot of stress and strain on the family.
The boys are in year 6 and will be making transition into secondary school in September one area we are already having difficulties with and I would like to record our experiences.
Both boys already find school a very difficult anxiety provoking environment and have missed a considerable amount of school.
My boys are wonderful, happy, funny, sensitive caring children and tourettes can be a cruel condition to live with.
I hope over the coming weeks I can give others an insight into our world.
The boys are in year 6 and will be making transition into secondary school in September one area we are already having difficulties with and I would like to record our experiences.
Both boys already find school a very difficult anxiety provoking environment and have missed a considerable amount of school.
My boys are wonderful, happy, funny, sensitive caring children and tourettes can be a cruel condition to live with.
I hope over the coming weeks I can give others an insight into our world.
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