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 !!
Tuesday 31 May 2011
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........
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