When tourettes reared its ugly head for my two beautiful boys
Little did I know it would take away many of the childhood joys
I feel cheated and hurt and feel I have missed out
Yes this is all about me today – I feel the need to shout !
I have changed into someone I hardly recognise
I am a grumpy stress monster under this disguise
Oh I can put on a brave face, that can be done with ease
A smile, a bit of make up, Im willing to please
But only I know in private the tears that are shed
The frustration and screaming that goes on in my head
Every day is a struggle one way or another
Its hard with teenagers as a mother
But with anxiety, stress and tics in the pot
Every day –‘ will they get to school or not?’
It seems to get harder and harder each day, and Im finding it a struggle I have to say
Friday, 28 February 2014
Friday, 14 February 2014
Year 9 update
A few remembered words from a specialist when the boys started year 7
'Things normally pick up by year 9'
So..... a lot of hope was pinned on year 9 - sadly not to be.
Voices breaking, manly hair sprouting, spots erupting, growing taller by the day the anxiety started to increase and with it the tics.
School felt year 9 was pivotal for making friendships etc and were heavily 'encouraging' the boys to go to class, stay in class longer etc. Unfortunately this took its toll and by half term they were exhausted. Things went from bad to worse after October half term, getting into school later and later, not making it into any classes. Anxiety at a level we had never witnessed before. Depression creeping in. Things got to crisis point very quickly.
Over the summer holidays we were assessed by early intervention social worker, who turned out to be an invaluable contact for me, advising and supporting and taking some of the pressure off liaising with school. Ed Welfare became involved and she too was and still is extremely supportive.
E.W. came out to the house over the course of a couple of weeks in the mornings and saw how difficult it was for the boys getting ready for school and she witnessed several bouts of severe anxiety and depression. Over the course of these mornings we both spoke to the boys and found out that they were feeling so pressured at school to remain in class and unfortunately some of the LSAs were forcing them to despite them being anxious and ticcy. The goal posts were being moved just so they could say - well done you stayed an extra 5 mins. What they didn't realise was the damage they were doing. School and us as parents were constantly saying, well done you managed a full 30 minutes in class, what we didn't realise was the boys saw this as a failure. They didn't manage to stay the whole time. No one had thought of it from this angle. So they were effectively 'failing' 5 times a day - 7 if you count tutor registration in the morning and after lunch.
School meant well we fully understand that, however their self esteem and confidence hit rock bottom and the sad thing was that school didn't really pick up on this and see the effect it was having.
So about 2 weeks before Christmas we got them back in full time - being taught cautiously in a classroom by themselves.
After Christmas we thought they would be able to return fairly well, they knew they would have no pressure to go into class. Unfortunately the anxiety got the better of them and we did a gradual return to school, on the advice of the psychiatrist.
We managed to build up to full time over the course of 2 weeks and this approach worked well. They have been at school for the rest of this half term pretty much full time and are still being taught mainly outside of the mainstream classroom.
So here we are having made it to half term. We seem to roller coaster from one holiday to the next.
I think the reason Im posting this is for parents to see that schools can be flexible if they are prepared to be. Don't be afraid to get Childrens Social Care involved if you are struggling. There is no stigma to this, they are helpful and supportive.
If you are having trouble with getting your school to understand the difficulties around attendance and homework - contact Ed Welfare and talk to them.
The major issue is awareness and getting schools to understand the very complex issues around Tourettes and the anxiety it causes. We are lucky - our school have always 'got it'. I understand from some other parents that they are having major battles with their school because they just don't understand it.
I would genuinely like to go into schools one day and help to raise awareness and maybe support other parents who have been in the same situation as I have.
One for the future :)
A very positive note is that we started to see a chiropractor during the summer holidays as the boys posture had got really bad. Partly due to tics affecting parts of the body, whiplash damage from neck tics !! and also due to walking with head down due to lack of self confidence.
This has proved very positive. The chiropractor is a young guy - severely dyslexic, a great role model. The boys enjoy going. We started 3 times a week, down to 2 and now down to once. Their posture is better and we are now starting to talk to them about diet. Yes TALK - its not really getting much further than talking ha ha - but hopefully the messages are going in.
'Things normally pick up by year 9'
So..... a lot of hope was pinned on year 9 - sadly not to be.
Voices breaking, manly hair sprouting, spots erupting, growing taller by the day the anxiety started to increase and with it the tics.
School felt year 9 was pivotal for making friendships etc and were heavily 'encouraging' the boys to go to class, stay in class longer etc. Unfortunately this took its toll and by half term they were exhausted. Things went from bad to worse after October half term, getting into school later and later, not making it into any classes. Anxiety at a level we had never witnessed before. Depression creeping in. Things got to crisis point very quickly.
Over the summer holidays we were assessed by early intervention social worker, who turned out to be an invaluable contact for me, advising and supporting and taking some of the pressure off liaising with school. Ed Welfare became involved and she too was and still is extremely supportive.
E.W. came out to the house over the course of a couple of weeks in the mornings and saw how difficult it was for the boys getting ready for school and she witnessed several bouts of severe anxiety and depression. Over the course of these mornings we both spoke to the boys and found out that they were feeling so pressured at school to remain in class and unfortunately some of the LSAs were forcing them to despite them being anxious and ticcy. The goal posts were being moved just so they could say - well done you stayed an extra 5 mins. What they didn't realise was the damage they were doing. School and us as parents were constantly saying, well done you managed a full 30 minutes in class, what we didn't realise was the boys saw this as a failure. They didn't manage to stay the whole time. No one had thought of it from this angle. So they were effectively 'failing' 5 times a day - 7 if you count tutor registration in the morning and after lunch.
School meant well we fully understand that, however their self esteem and confidence hit rock bottom and the sad thing was that school didn't really pick up on this and see the effect it was having.
So about 2 weeks before Christmas we got them back in full time - being taught cautiously in a classroom by themselves.
After Christmas we thought they would be able to return fairly well, they knew they would have no pressure to go into class. Unfortunately the anxiety got the better of them and we did a gradual return to school, on the advice of the psychiatrist.
We managed to build up to full time over the course of 2 weeks and this approach worked well. They have been at school for the rest of this half term pretty much full time and are still being taught mainly outside of the mainstream classroom.
So here we are having made it to half term. We seem to roller coaster from one holiday to the next.
I think the reason Im posting this is for parents to see that schools can be flexible if they are prepared to be. Don't be afraid to get Childrens Social Care involved if you are struggling. There is no stigma to this, they are helpful and supportive.
If you are having trouble with getting your school to understand the difficulties around attendance and homework - contact Ed Welfare and talk to them.
The major issue is awareness and getting schools to understand the very complex issues around Tourettes and the anxiety it causes. We are lucky - our school have always 'got it'. I understand from some other parents that they are having major battles with their school because they just don't understand it.
I would genuinely like to go into schools one day and help to raise awareness and maybe support other parents who have been in the same situation as I have.
One for the future :)
A very positive note is that we started to see a chiropractor during the summer holidays as the boys posture had got really bad. Partly due to tics affecting parts of the body, whiplash damage from neck tics !! and also due to walking with head down due to lack of self confidence.
This has proved very positive. The chiropractor is a young guy - severely dyslexic, a great role model. The boys enjoy going. We started 3 times a week, down to 2 and now down to once. Their posture is better and we are now starting to talk to them about diet. Yes TALK - its not really getting much further than talking ha ha - but hopefully the messages are going in.
Thursday, 27 June 2013
another little poem by me
The teenage years
As they grow from toddler to teen
From fresh little faces to the great unclean
You realise how the years have flown
Your cute little child has suddenly grown.
From sitting in the bath and playing with toys
You have to nag them to shower – is that just boys?
You can’t understand them when they speak
You ask them to repeat it and get a lot of cheek
With fluffy hair on the upper lip, you daren’t enter their
bedroom
It’s a tip !!!!
With clothes strewn around and plates on the floor, I’m no
longer allowed in unless I knock on the door.
On the computer for hour upon hour
Don’t you have homework to do ? I say, ignoring the glower.
I would give anything to go back in time
To spend a day with those boys of mine,
As babies, as toddlers as sweet little boys
I would spend more time with them playing with toys.
I would forget the cleaning the washing of clothes and play
this little piggy with their cute little toes.
I would ignore the tedious chores to be done,
I would simply sit down with them and have some fun.
Monday, 17 June 2013
3 months on - yes it was the start of a new wave of tics :(
So here we are 17th June, 5 weeks left of year 8.
School are still being as supportive, flexible, creative as they can be.
Unfortunately due to this recent wax in tics the boys have missed a lot of school. Even when they have been there they have not been able to achieve very much.
This condition is so cruel in so many ways. Not only do they have to deal with being very different outwardly to their peers but they also have to deal with the roller coaster of the tics. When they are in a waning period they start to build confidence by doing more at school, getting into some lessons with their tutor groups, joining in more with friends at home and just simply being more active. Then the tics kick in again and its 1 step forward 3 steps back continuously. I worry now that as young teenagers this is going to affect their self esteem more and more. They simply cannot do what a lot of the other kids are doing. They don't have the stamina or fitness levels to keep up with them. The medication and constant ticcing makes them exceptionally tired. They get quite insecure and emotional during these periods. They rely heavily on me to remind them of simple tasks because although they are bright boys when the tics are heightened they seem to lose the ability to process information as they would do normally. They have the memory of a goldfish.
We are also dealing with puberty and simply being teenagers trying to make their mark but I worry they are going to be left behind by their local friends very soon. Im not sure where that is going to leave them. They have a couple of friends from school but don't show much interest in meeting up with them outside of school. They rely heavily on their local primary school friends.
For us as parents its very very difficult, watching your child struggle daily. Lying awake until gone midnight because the tics keep them awake. Realising that the next morning to stand half a chance of coping at school they need to sleep in which takes away half the morning.
We have to balance helping them cope with pushing in certain situations because we have to prepare them for the future and they have to realise they cant opt out of everything because of their tics. This is the most difficult thing.
Unfortunately they have become to rely heavily on their computers for their entertainment. It doesn't help that one of their main friends is also obsessed with computer games and so getting them outside is a nightmare. The summer holidays is going to be difficult because I know I am going to have to put my foot down on how long they can be on their computers each day but I wonder just what else they can do at this age given they are not sporty, they are not the kind of kids to hang around town (and I wouldn't let them anyway !) they don't have the confidence to go to clubs.
For me personally Im finding the last 7 years of stress really taking its toll. My tolerance levels are zero - I go from calm to raging in seconds. I feel sometimes on the verge of panic attack and on the verge of tears at the drop of a hat. There is no help out there for us mums and dads with children of tourettes. I had two professionals over the last few years promising to put me in touch with an agency that can give me some stress counselling but they never came up with it.
There are the support groups with Tourettes action but to be honest I am sick and tired of talking about it and don't really want to do that. The boys don't show any interest in meeting other kids with TS either. I feel it is already all consuming that I don't want my social life taken up with it as well.
Next year we have options to consider. I feel we will need to review this early in the year and be sensible about the remaining school year. I don't see the point in them continuing to struggle with subjects they have no intention of taking when they are behind in the ones they do want to take. I feel they will need to have extra tuition in the subjects they want to do and drop the others early. Otherwise they may lose out when applying for their options due to not being up to date with the work etc.
We have two wonderful caring, handsome boys who are developing a very good understanding of other peoples differences and are tolerant to others. For that we should be very grateful. So many kids of their age think of nothing but themselves. They are polite and friendly. I would just like whoever or whatever it is out there to give them a break. They really, really deserve a break. They deserve to be able to go to bed and go to sleep without the tics. They deserve to be able to get up in the morning and not take 3 hours to get sorted and get to school. They deserve to not be stressed at by me !! Joe deserves to be able to go to cricket club more than twice and to be able to play in the team he was heading for. They deserve so much more than what is constantly coming their way and knocking them back time and time again.
School are still being as supportive, flexible, creative as they can be.
Unfortunately due to this recent wax in tics the boys have missed a lot of school. Even when they have been there they have not been able to achieve very much.
This condition is so cruel in so many ways. Not only do they have to deal with being very different outwardly to their peers but they also have to deal with the roller coaster of the tics. When they are in a waning period they start to build confidence by doing more at school, getting into some lessons with their tutor groups, joining in more with friends at home and just simply being more active. Then the tics kick in again and its 1 step forward 3 steps back continuously. I worry now that as young teenagers this is going to affect their self esteem more and more. They simply cannot do what a lot of the other kids are doing. They don't have the stamina or fitness levels to keep up with them. The medication and constant ticcing makes them exceptionally tired. They get quite insecure and emotional during these periods. They rely heavily on me to remind them of simple tasks because although they are bright boys when the tics are heightened they seem to lose the ability to process information as they would do normally. They have the memory of a goldfish.
We are also dealing with puberty and simply being teenagers trying to make their mark but I worry they are going to be left behind by their local friends very soon. Im not sure where that is going to leave them. They have a couple of friends from school but don't show much interest in meeting up with them outside of school. They rely heavily on their local primary school friends.
For us as parents its very very difficult, watching your child struggle daily. Lying awake until gone midnight because the tics keep them awake. Realising that the next morning to stand half a chance of coping at school they need to sleep in which takes away half the morning.
We have to balance helping them cope with pushing in certain situations because we have to prepare them for the future and they have to realise they cant opt out of everything because of their tics. This is the most difficult thing.
Unfortunately they have become to rely heavily on their computers for their entertainment. It doesn't help that one of their main friends is also obsessed with computer games and so getting them outside is a nightmare. The summer holidays is going to be difficult because I know I am going to have to put my foot down on how long they can be on their computers each day but I wonder just what else they can do at this age given they are not sporty, they are not the kind of kids to hang around town (and I wouldn't let them anyway !) they don't have the confidence to go to clubs.
For me personally Im finding the last 7 years of stress really taking its toll. My tolerance levels are zero - I go from calm to raging in seconds. I feel sometimes on the verge of panic attack and on the verge of tears at the drop of a hat. There is no help out there for us mums and dads with children of tourettes. I had two professionals over the last few years promising to put me in touch with an agency that can give me some stress counselling but they never came up with it.
There are the support groups with Tourettes action but to be honest I am sick and tired of talking about it and don't really want to do that. The boys don't show any interest in meeting other kids with TS either. I feel it is already all consuming that I don't want my social life taken up with it as well.
Next year we have options to consider. I feel we will need to review this early in the year and be sensible about the remaining school year. I don't see the point in them continuing to struggle with subjects they have no intention of taking when they are behind in the ones they do want to take. I feel they will need to have extra tuition in the subjects they want to do and drop the others early. Otherwise they may lose out when applying for their options due to not being up to date with the work etc.
We have two wonderful caring, handsome boys who are developing a very good understanding of other peoples differences and are tolerant to others. For that we should be very grateful. So many kids of their age think of nothing but themselves. They are polite and friendly. I would just like whoever or whatever it is out there to give them a break. They really, really deserve a break. They deserve to be able to go to bed and go to sleep without the tics. They deserve to be able to get up in the morning and not take 3 hours to get sorted and get to school. They deserve to not be stressed at by me !! Joe deserves to be able to go to cricket club more than twice and to be able to play in the team he was heading for. They deserve so much more than what is constantly coming their way and knocking them back time and time again.
Monday, 18 March 2013
Hope this is not the start of tic increase or is it something else??.......
A short post as I am desperately hoping this is not a new wave of tics on the way.
Or could it be a reaction to something they have not had in a while ..... aspartame !?!?!?
We went out to tea yesterday and the boys had refill pepsi. Now normal pepsi does not have aspartame. But the drinks the boys had were the ones you pour yourself and they are the ones that are mixed with the syrup and fizzy water(or whatever it is). I have to wonder now if the right stuff was in the one labeled Pepsi? Had the diet crap been put in by mistake?
Joe woke at around midnight with a nose bleed, and unfortunately his tics started up due to irritation from a sore lip. So he took a while getting back to sleep. Random nose bleeds is one of the suggested side effects of aspartame.
Ben then woke up at 4am with tics and was still ticcing at 7.30 having had no further sleep. This has never happened before. After drinking his first glass of fizzy crap he flet distinctly unwell and was unable to eat his food.
Very intrigued now ...................
Or could it be a reaction to something they have not had in a while ..... aspartame !?!?!?
We went out to tea yesterday and the boys had refill pepsi. Now normal pepsi does not have aspartame. But the drinks the boys had were the ones you pour yourself and they are the ones that are mixed with the syrup and fizzy water(or whatever it is). I have to wonder now if the right stuff was in the one labeled Pepsi? Had the diet crap been put in by mistake?
Joe woke at around midnight with a nose bleed, and unfortunately his tics started up due to irritation from a sore lip. So he took a while getting back to sleep. Random nose bleeds is one of the suggested side effects of aspartame.
Ben then woke up at 4am with tics and was still ticcing at 7.30 having had no further sleep. This has never happened before. After drinking his first glass of fizzy crap he flet distinctly unwell and was unable to eat his food.
Very intrigued now ...................
Thursday, 7 February 2013
2013 update
Hi to anyone that cares to read this.
I havent been on for sometime, completely forgot about my blogging to be honest.
Today I was talking to a lovely research nurse at Nottingham University about some research the boys would like to be involved in and it reminded me of the blog.
So here I am.
Well the boys still have TS of course, it waxes and wanes of course, but they do seem to be managing fairly well. Their attendance at school is up in the high 70 to 80% which is incredible progress. Even if they have a bad day, or a difficult start to the day they always want to go in which says such a lot for the support they are receiving.
They have the classroom built and complete - called 'the learning room', where they can have lessons if they are particularly ticcy. They have reward schemes for trying to stay in mainstream lessons longer and for getting in to morning and lunchtime registration. Just a week ago they had a reward of cooking in the school canteen which they love, and they were allowed to create their own panini which was put on sale !! They have a lovely SEN teacher 4 days a week who will be doing some 1:1 lessons on the core subjects to help them catch up. She is my main point of contact now and we normally liaise with each other on a daily basis.
This time of year is always nervy for us as it is generally when the tics increase. As I type this I am very aware that I have collected Ben from school 3 times this week early, due to not feeling too well and tics being off the scale. So a tad worried this might be the start of a difficult period for him.
His eye tics are back with a vengeance and I was just reading last years post around the same time and there they were !! Bizarre I know. We have the eye tics triggering bigger body tics. He is going to sleep ticcing and waking up ticcing which makes the start to the day very difficult as he is exhausted.
We have little chats about having tics going into adulthood which is highly likely. I like to reassure both boys that it doesnt have to get in the way of what they want to achieve. We have to continue to help to raise awareness so other people understand.
When I picked Ben up he was being quite vocal and physical with his tics and there were children outside the school. I asked him if he felt uncomfortable with people seeing him and he said no not really. He said there was a lad in the medical room who was trying to distract him and making him laugh. In general we find people are very understanding if they know what the problem is. Generally its ignorance that is the issue. People react agressively when they dont understand things.
Joe seems to be coping quite well at the moment and Im keeping everything crossed as I write this when I say that his tics seem quite settled.
We have cut out aspartame from the boys diet as there is some suggestion that it can exacerbate tics and I would say a couple of Joes tics have died right down but they could just be in a waning period. Time will tell.
Clearly its not helping Ben too much right now !!! But we will continue with it as there are lots of downsides to consuming aspartame and other artificial sweetners.
Not much to say other than things are going pretty well, school continue to be extrememly supportive and flexible. Couldnt ask for more. So if any of you out there are having trouble with schools then contact me as I believe our school would be happy to talk through their strategies and approach.
I will be back on in a few weeks when we have been to Nottingham for our first little reasearch session. Ben is apprehensive but we will see. I believe its important to do this and hopefully will be able to alleviate his worries.
I havent been on for sometime, completely forgot about my blogging to be honest.
Today I was talking to a lovely research nurse at Nottingham University about some research the boys would like to be involved in and it reminded me of the blog.
So here I am.
Well the boys still have TS of course, it waxes and wanes of course, but they do seem to be managing fairly well. Their attendance at school is up in the high 70 to 80% which is incredible progress. Even if they have a bad day, or a difficult start to the day they always want to go in which says such a lot for the support they are receiving.
They have the classroom built and complete - called 'the learning room', where they can have lessons if they are particularly ticcy. They have reward schemes for trying to stay in mainstream lessons longer and for getting in to morning and lunchtime registration. Just a week ago they had a reward of cooking in the school canteen which they love, and they were allowed to create their own panini which was put on sale !! They have a lovely SEN teacher 4 days a week who will be doing some 1:1 lessons on the core subjects to help them catch up. She is my main point of contact now and we normally liaise with each other on a daily basis.
This time of year is always nervy for us as it is generally when the tics increase. As I type this I am very aware that I have collected Ben from school 3 times this week early, due to not feeling too well and tics being off the scale. So a tad worried this might be the start of a difficult period for him.
His eye tics are back with a vengeance and I was just reading last years post around the same time and there they were !! Bizarre I know. We have the eye tics triggering bigger body tics. He is going to sleep ticcing and waking up ticcing which makes the start to the day very difficult as he is exhausted.
We have little chats about having tics going into adulthood which is highly likely. I like to reassure both boys that it doesnt have to get in the way of what they want to achieve. We have to continue to help to raise awareness so other people understand.
When I picked Ben up he was being quite vocal and physical with his tics and there were children outside the school. I asked him if he felt uncomfortable with people seeing him and he said no not really. He said there was a lad in the medical room who was trying to distract him and making him laugh. In general we find people are very understanding if they know what the problem is. Generally its ignorance that is the issue. People react agressively when they dont understand things.
Joe seems to be coping quite well at the moment and Im keeping everything crossed as I write this when I say that his tics seem quite settled.
We have cut out aspartame from the boys diet as there is some suggestion that it can exacerbate tics and I would say a couple of Joes tics have died right down but they could just be in a waning period. Time will tell.
Clearly its not helping Ben too much right now !!! But we will continue with it as there are lots of downsides to consuming aspartame and other artificial sweetners.
Not much to say other than things are going pretty well, school continue to be extrememly supportive and flexible. Couldnt ask for more. So if any of you out there are having trouble with schools then contact me as I believe our school would be happy to talk through their strategies and approach.
I will be back on in a few weeks when we have been to Nottingham for our first little reasearch session. Ben is apprehensive but we will see. I believe its important to do this and hopefully will be able to alleviate his worries.
Tuesday, 26 June 2012
Year 7 update
I havent been on here for some time, so thought I should update as to how year 7 has been particularly as there will be a lot of nervous parents and children out there right now.
The school were warmly embracing of Joe and Ben and continue to be so. The support is second to none and we have only had a handful of situations where things could have gone better. One was an enterprise day where all of year 7 were in the hall for a fun business day. Unfortunately this was not an ideal environment for the boys, and having not got to classes very much they are not involved with their year as much as we would like. They were encouraged to go but it was an upsetting experience for them and resulted in them having a very difficult day. The other time was when a fire alarm went off and Joe was left by himself to find his way to the lunch hall and get lunch. Usually he is accompanied, he managed it but was extremely stressed by it. So both of these situations were out of the norm and we have discussed with school and they understand how and why it affected the boys as it did, and we understand how and why it happened. Our lines of communication are very good.
Other times were minor where an LSA thought one of the boys could perhaps remain in class a bit longer. As parents we are happy for school to push the boundaries a bit but its a fine line between pushing and helping and causing anxiety. So far this has all been managed extrememly well.
So much so that attendance this year has increased from approximately 57% attendance to around 75% for Joe and a fair bit higher for Ben (not received the figure yet).
School are extremely flexible - for example Ben gets very stressed with changing for PE , so they allow him to do it as he is, shoes and all if necessary. He is happy, they are happy.
We take them to school just after registration to avoid any rush of kids and chaos and noise. We drop them off at the back of the school where they go directly into the progress department. If they are late due to morning tics we drop them off the same place. This is working very well for both sides. Of course it would be ideal if they could get into registration but the noise and unstructured environment proves too much for them. School understand better to get them in calm and get a good start than to force the issue and end up having a morning of unproductive tics.
The sad thing is that they havent made friends in the same way as their peers so they are missing out on that. Their constant exhaustion mentally and physically means they havent felt able to join any after school clubs. Another area where children make friends and socialise.
It bought it home to me today, when a friend posted a photo of a sporting event her child is at today. Lovely experience and will create happy memories. At the same time Joe was struggling phsyically to get out of the car at school. This has a terrible psychological effect on him as he thinks all eyes are on him and he got very distressed about going into school. It just made me realise quite sharply just how different the boys experiences of school are compared to the norm. Whilst they enjoy it when they are there its often a miserable experience in the mornings, very stressful for them and for us as parents.
I worry about how this will affect them as time goes on. Will they become angry rebelious teenagers. I hope not. They are lovely sensitive kids but facing this day in day out takes its toll, and we have already started to see the odd sign of depression.
We usually find at this time of the year that their tics settle down, allowing them to do more and not feel so tired. But it has not been the case this year unfortunately. There has been no let up since November. Of course some days are much better than others but just when you think you are on a roll and things are improving BANG they are back again. Or we get a school holiday and have to go through the anxiety of returning to school after the break.
I would say to all the parents out there that are feeling frustrated with their school - it can be done. Our school is proof. They are understanding, warm and loving. When they say every child matters they absolutely mean it. So please dont let a school tell you they cant be flexible because they can and they should. Tourettes is a disability and allowances need to be made.
We must all continue with our efforts to raise awareness because the more this condition is understood the easier our kids (and adult ticcers too) lives will be.
Year 7 for us has gone way beyond our expectations. The boys had a dreadful experience with our first choice of school being rudely discriminating and cold. A late decision to see their existing school unsettled the boys and they had to cope with leaving the security of their existing friends, who know them and understand them, to a school where they knew no one at all. Thats a very hard thing for anyone to do let alone two sensitive lads with anxiety and TS.
All I can say is WELL DONE JOE AND BEN - YOU EXCEEDED WHAT WAS EXPECTED OF YOU AND YOU SHOULD BE VERY VERY VERY PROUD OF YOURSELVES. WE CERTAINLY ARE.
The school were warmly embracing of Joe and Ben and continue to be so. The support is second to none and we have only had a handful of situations where things could have gone better. One was an enterprise day where all of year 7 were in the hall for a fun business day. Unfortunately this was not an ideal environment for the boys, and having not got to classes very much they are not involved with their year as much as we would like. They were encouraged to go but it was an upsetting experience for them and resulted in them having a very difficult day. The other time was when a fire alarm went off and Joe was left by himself to find his way to the lunch hall and get lunch. Usually he is accompanied, he managed it but was extremely stressed by it. So both of these situations were out of the norm and we have discussed with school and they understand how and why it affected the boys as it did, and we understand how and why it happened. Our lines of communication are very good.
Other times were minor where an LSA thought one of the boys could perhaps remain in class a bit longer. As parents we are happy for school to push the boundaries a bit but its a fine line between pushing and helping and causing anxiety. So far this has all been managed extrememly well.
So much so that attendance this year has increased from approximately 57% attendance to around 75% for Joe and a fair bit higher for Ben (not received the figure yet).
School are extremely flexible - for example Ben gets very stressed with changing for PE , so they allow him to do it as he is, shoes and all if necessary. He is happy, they are happy.
We take them to school just after registration to avoid any rush of kids and chaos and noise. We drop them off at the back of the school where they go directly into the progress department. If they are late due to morning tics we drop them off the same place. This is working very well for both sides. Of course it would be ideal if they could get into registration but the noise and unstructured environment proves too much for them. School understand better to get them in calm and get a good start than to force the issue and end up having a morning of unproductive tics.
The sad thing is that they havent made friends in the same way as their peers so they are missing out on that. Their constant exhaustion mentally and physically means they havent felt able to join any after school clubs. Another area where children make friends and socialise.
It bought it home to me today, when a friend posted a photo of a sporting event her child is at today. Lovely experience and will create happy memories. At the same time Joe was struggling phsyically to get out of the car at school. This has a terrible psychological effect on him as he thinks all eyes are on him and he got very distressed about going into school. It just made me realise quite sharply just how different the boys experiences of school are compared to the norm. Whilst they enjoy it when they are there its often a miserable experience in the mornings, very stressful for them and for us as parents.
I worry about how this will affect them as time goes on. Will they become angry rebelious teenagers. I hope not. They are lovely sensitive kids but facing this day in day out takes its toll, and we have already started to see the odd sign of depression.
We usually find at this time of the year that their tics settle down, allowing them to do more and not feel so tired. But it has not been the case this year unfortunately. There has been no let up since November. Of course some days are much better than others but just when you think you are on a roll and things are improving BANG they are back again. Or we get a school holiday and have to go through the anxiety of returning to school after the break.
I would say to all the parents out there that are feeling frustrated with their school - it can be done. Our school is proof. They are understanding, warm and loving. When they say every child matters they absolutely mean it. So please dont let a school tell you they cant be flexible because they can and they should. Tourettes is a disability and allowances need to be made.
We must all continue with our efforts to raise awareness because the more this condition is understood the easier our kids (and adult ticcers too) lives will be.
Year 7 for us has gone way beyond our expectations. The boys had a dreadful experience with our first choice of school being rudely discriminating and cold. A late decision to see their existing school unsettled the boys and they had to cope with leaving the security of their existing friends, who know them and understand them, to a school where they knew no one at all. Thats a very hard thing for anyone to do let alone two sensitive lads with anxiety and TS.
All I can say is WELL DONE JOE AND BEN - YOU EXCEEDED WHAT WAS EXPECTED OF YOU AND YOU SHOULD BE VERY VERY VERY PROUD OF YOURSELVES. WE CERTAINLY ARE.
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