Hi all
Having a bit of an emotional day today, not feeling very positive.
Boys have had a tricky couple of days and after witnessing Joe wailing like a police siren, shaking himself, jumping and legs kicking out not being able to move I have felt very sad. He was unable to make school and I always find that stressful as I feel, selfishly I know, that I can use that time to recharge my batteries and feel more able to cope in the evenings.
Ben Got to school at 10.30 after a pretty terrible morning, mostly extremely loud vocals but with the two of them going at the same time this morning it was soooo stressful.
Then the guilt kicks in, why am I feeling so sorry for myself when its they who have to live with this condition.
I feel guilty because school are pulling out all the stops for the boys and I feel I should be able to manage them better and get them to school.
I feel totally inadequate today to cope and remain positive for them.
I feel guilty constantly.
I started thinking about their teens, what if this, what if that?. I dont normally do this as I know it makes me feel very worried but today I just couldnt stop myself.
Joe told me at bedtime that I never believe him when he tells me things, that I question him all the time. I know I do this and its because over the last 4 years we have been trying to determine how much is the tourettes and how much is the boys normal 12 year old behaviour.
I feel I would have been a completely different mum if the tourettes was not there.
Certainly calmer and less stressed.
Poor Ben then had a horrible tic attack at bedtime which is the regular occurance now, so bedtime is not even calm.
Phew - I just want today to be over, and tomorrow to be a better day.
I know my boys will survive and have a great future firstly because they are lovely caring souls and also because I dont get too many days like today, I try to remain positive and try not to look too far ahead but you know what, some times its very difficult.
I asked Ben today - ' how would you feel if you had a child with TS?' his answer was 'Happy and sad at the same time, Sad because he/she has tics, but happy because I am experienced and would be able to help'.
I just feel they both deserve a break, they really really deserve a break.
Wednesday, 18 January 2012
Tuesday, 10 January 2012
payback for a good day....
I think this is the way the next couple of months will be for my boys.
Good weekend, but exceptionally tired. 12 year old in bed by 7pm on a Saturday night !
Monday - good day at school, getting to lots of lessons, praise rewards.
Monday evening - couldnt get to sleep very well, asleep by about 9.30 (instead of normal 7.30/8)
One had tics as soon as he opened his eyes spent the day at home
The other went off to school ok but had 3 hours of severe leg tics and couldnt walk. Severe tics in the car on the way home.
Same old pattern, couple of good days, payback time !!
Wonder what tomorrow will bring for them?
Are these the symptoms Ed Balls displays Mr Cameron?, I dont think so.
Good weekend, but exceptionally tired. 12 year old in bed by 7pm on a Saturday night !
Monday - good day at school, getting to lots of lessons, praise rewards.
Monday evening - couldnt get to sleep very well, asleep by about 9.30 (instead of normal 7.30/8)
One had tics as soon as he opened his eyes spent the day at home
The other went off to school ok but had 3 hours of severe leg tics and couldnt walk. Severe tics in the car on the way home.
Same old pattern, couple of good days, payback time !!
Wonder what tomorrow will bring for them?
Are these the symptoms Ed Balls displays Mr Cameron?, I dont think so.
Sunday, 8 January 2012
Angry
The more I think about David Cameron uttering those words the more angry I get.
Some people will probably think I am over reacting but I feel that when people make flippant remarks like that it shows their true colours.
David Cameron is supposedly a well educated person having been educated at Eton I believe. What I also believe is that he does not live in the real world. He has never lived in it and he never will. How can he be the voice of this country when he has and continues to lead a very privilidged life. I dont believe he can relate to the ordinary working families that helped to vote him in.
What he should be able to relate to though is what its like having a child with a disability. No matter what the disability is it affects the whole family.
I would personally like to invite Mr Cameron into the home of a family that has a child with tourette syndrome. To witness the stress, upset it causes on a daily basis. Will they or wont they get to school today? How bad will their tics be? Will he kick his leg so hard today that he cant walk on it? Will the Many children have to take something to help them sleep to stop them being kept awake half the night because of the tics. To witness the effect it has on the childs self confidence when he shouts uncontrollably in public. To witness a school day, not getting into the majority of classes due to tics. Not being able to access the curiculum like most children, to not be able to participate in PE, to miss out on the extra curricular activities that most children and parents take for granted.
For the family to have to think in very fine detail where they are going on a day out, will the child be able to cope with the environment, how long can they cope with the environment.
The BBC debate on the radio last night, inevitably got around to the uncontrollable swearing that some people with TS unfortunately have to bear. But this is not just what TS is about. People are hospitalised with it because their tics are so bad they cannot function. They pull muscles, break bones, burn themselves. We have been to A&E on 3 or 4 occasions due to stress on muscles - often very late at night.
The swearing tic as it is called is properly named Coprolalia. This affects 10% of people with tourettes and it is a very difficult condition to live with. I know of small children that have this, can you imagine what it must be like for a child who knows swearing is wrong to have this uncontrollable urge to swear. It is not something they can control. You Cameron can control what you say - what is your excuse?
If I had a magic wand I would cast a spell to make him and others like Ricky Gervais live with the condition for a week. See if they would mock after that - I dont think so.
Some people will probably think I am over reacting but I feel that when people make flippant remarks like that it shows their true colours.
David Cameron is supposedly a well educated person having been educated at Eton I believe. What I also believe is that he does not live in the real world. He has never lived in it and he never will. How can he be the voice of this country when he has and continues to lead a very privilidged life. I dont believe he can relate to the ordinary working families that helped to vote him in.
What he should be able to relate to though is what its like having a child with a disability. No matter what the disability is it affects the whole family.
I would personally like to invite Mr Cameron into the home of a family that has a child with tourette syndrome. To witness the stress, upset it causes on a daily basis. Will they or wont they get to school today? How bad will their tics be? Will he kick his leg so hard today that he cant walk on it? Will the Many children have to take something to help them sleep to stop them being kept awake half the night because of the tics. To witness the effect it has on the childs self confidence when he shouts uncontrollably in public. To witness a school day, not getting into the majority of classes due to tics. Not being able to access the curiculum like most children, to not be able to participate in PE, to miss out on the extra curricular activities that most children and parents take for granted.
For the family to have to think in very fine detail where they are going on a day out, will the child be able to cope with the environment, how long can they cope with the environment.
The BBC debate on the radio last night, inevitably got around to the uncontrollable swearing that some people with TS unfortunately have to bear. But this is not just what TS is about. People are hospitalised with it because their tics are so bad they cannot function. They pull muscles, break bones, burn themselves. We have been to A&E on 3 or 4 occasions due to stress on muscles - often very late at night.
The swearing tic as it is called is properly named Coprolalia. This affects 10% of people with tourettes and it is a very difficult condition to live with. I know of small children that have this, can you imagine what it must be like for a child who knows swearing is wrong to have this uncontrollable urge to swear. It is not something they can control. You Cameron can control what you say - what is your excuse?
If I had a magic wand I would cast a spell to make him and others like Ricky Gervais live with the condition for a week. See if they would mock after that - I dont think so.
Cameron - ignorant pillock
So David Cameron, sitting opposite Ed Balls is like sitting opposite someone with tourettes is it?
Shows how very little you know, and you know what? I would rather sit opposite someone with Tourettes anyday than sit in a room with any of you lot in parliament !!
How are we ever ever going to educate the public into understanding tourettes and how distressing it is if public figures use it as a term of ridicule at every opportunity.
It absolutely astounds me that with this politically correct society we live in where you are practically unable to breath that disabilities are still often sniggered at. How dare you - and you call yourself educated !
Children with this condition face school every day, wondering if they will be teased, adults go into the work place wondering if they will cope each day without causing too much embarrassment to themselves. And oh yes, TS suffers are often concerned for the people around them too. Unlike you Mr Cameron !
Did you not have a disabled son Mr Cameron? Shame on you.
Shows how very little you know, and you know what? I would rather sit opposite someone with Tourettes anyday than sit in a room with any of you lot in parliament !!
How are we ever ever going to educate the public into understanding tourettes and how distressing it is if public figures use it as a term of ridicule at every opportunity.
It absolutely astounds me that with this politically correct society we live in where you are practically unable to breath that disabilities are still often sniggered at. How dare you - and you call yourself educated !
Children with this condition face school every day, wondering if they will be teased, adults go into the work place wondering if they will cope each day without causing too much embarrassment to themselves. And oh yes, TS suffers are often concerned for the people around them too. Unlike you Mr Cameron !
Did you not have a disabled son Mr Cameron? Shame on you.
Friday, 6 January 2012
long time
I just realised today that I have neglected my blog completely. October being the last post.
First term at secondary went very well, boys are keen to go knowing they are very well supported. School are maintaining the very positive start and its clear from the statement review meeting we had today that this will continue. Boys have had lots of tics and did not manage to get into class much during the second part of the term. However the LSAs have worked very hard as have the teachers as best they can, sending work for the boys to do outside of the class.
A new classroom is to be built primarily for the boys but of course other children will benefit from it too. It will be an area they can learn in if they are unable to attend classes. It will have a 'rest' room within it so the boys can go there if the tics are particularly severe. This will be a soft area.
We have finally got a brilliant OT working with them.
A specialist literacy teacher is going to be sourced to work 1:1 with the boys as they have missed so much and have no confidence at all in this area.
A qualified teacher is being asked for to teach the boys more effectively when they cannot attend the main classes as the LSAs are currently doing far more than their role calls for. This is looking hopeful.
This may seem a lot to some people but the cost of this is a drop in the ocean compared to the cost of a special school (of which there are none in the area ).
All this in 4 months !
We are going into the dreaded time of year again and already we are seeing the tics ramp up. Jan to March being the most difficult time historically. However with the brilliant support they have we are hoping that we can improve on the attendance this year compared to last year which would be great progress.
We have continued with the mouthsplint and we have seen some positive results. Tics do not disappear completely but we firmly believe in the treatment at this stage. The only issue at present is that the boys are still losing teeth and as a consequence their other teeth move around. So the splints very quickly stop working as they dont fit correctly for very long.
I feel I should sign off with NARWAL - being the most recent word the boys shout out. Lets face it - it could be worse.
First term at secondary went very well, boys are keen to go knowing they are very well supported. School are maintaining the very positive start and its clear from the statement review meeting we had today that this will continue. Boys have had lots of tics and did not manage to get into class much during the second part of the term. However the LSAs have worked very hard as have the teachers as best they can, sending work for the boys to do outside of the class.
A new classroom is to be built primarily for the boys but of course other children will benefit from it too. It will be an area they can learn in if they are unable to attend classes. It will have a 'rest' room within it so the boys can go there if the tics are particularly severe. This will be a soft area.
We have finally got a brilliant OT working with them.
A specialist literacy teacher is going to be sourced to work 1:1 with the boys as they have missed so much and have no confidence at all in this area.
A qualified teacher is being asked for to teach the boys more effectively when they cannot attend the main classes as the LSAs are currently doing far more than their role calls for. This is looking hopeful.
This may seem a lot to some people but the cost of this is a drop in the ocean compared to the cost of a special school (of which there are none in the area ).
All this in 4 months !
We are going into the dreaded time of year again and already we are seeing the tics ramp up. Jan to March being the most difficult time historically. However with the brilliant support they have we are hoping that we can improve on the attendance this year compared to last year which would be great progress.
We have continued with the mouthsplint and we have seen some positive results. Tics do not disappear completely but we firmly believe in the treatment at this stage. The only issue at present is that the boys are still losing teeth and as a consequence their other teeth move around. So the splints very quickly stop working as they dont fit correctly for very long.
I feel I should sign off with NARWAL - being the most recent word the boys shout out. Lets face it - it could be worse.
Wednesday, 19 October 2011
as the tics increase
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. :)
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. :)
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 :)
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