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.
Tuesday 26 June 2012
Thursday 9 February 2012
oh dear
Tics getting increasingly bad at the moment. Ben horrible eye tics that trigger off his loud shouts and neck tic. Very distressed this evening. Last night 3 hours of tics keeping him awake. Thank goodness not tonight, about 1/2 hour but he was so exhausted sleep just took over.
Joe's leg kicking tic back with a vengeance - he too very upset and distressed.
Despite the tics getting worse as they always do this time of year, they are still managing some school. Not every day, and not necessarily full days but so much better than the last 4 years at this time.
School are being very flexible and it is really helping.
They have a personalised timetable as they are not getting into many lessons at the moment. They agreed today to add PE daily as this is something Joe in particular enjoys, and it may help him to get in on the more difficult days. Knowing he has something lighthearted to do on a particularly academic day can make all the difference. Ben too likes his 1:1 PE, which is no mean feat as its not his favourite thing. Cooking & gardening will also be introduced periodically to add some interest.
New 'progress' classroom being built so the boys will have a proper classroom environment to work in when not in class. This is just fantastic, other children at the school will benefit from this too. Not just children with TS but other children with different needs. This will make it much more sociable for them all to work together and to understand each other. As time goes on and tics get better the boys will hopefully get back into class more and be able to make some friends.
Friends are being made but it is very slow and difficult as they are not in class. School are also very aware of this and manufacture situations to enable them to be with one or two children they have already started making friendships with.
So, difficult days, but all good on the school front.
This is a very unusual story Im sad to say, as many families with TS children going through the school system are having a lot of difficulties right now. Lack of understanding and willingness to think outside the box, lack of funding for additional support.
I am very very grateful for our situation right now.
Joe's leg kicking tic back with a vengeance - he too very upset and distressed.
Despite the tics getting worse as they always do this time of year, they are still managing some school. Not every day, and not necessarily full days but so much better than the last 4 years at this time.
School are being very flexible and it is really helping.
They have a personalised timetable as they are not getting into many lessons at the moment. They agreed today to add PE daily as this is something Joe in particular enjoys, and it may help him to get in on the more difficult days. Knowing he has something lighthearted to do on a particularly academic day can make all the difference. Ben too likes his 1:1 PE, which is no mean feat as its not his favourite thing. Cooking & gardening will also be introduced periodically to add some interest.
New 'progress' classroom being built so the boys will have a proper classroom environment to work in when not in class. This is just fantastic, other children at the school will benefit from this too. Not just children with TS but other children with different needs. This will make it much more sociable for them all to work together and to understand each other. As time goes on and tics get better the boys will hopefully get back into class more and be able to make some friends.
Friends are being made but it is very slow and difficult as they are not in class. School are also very aware of this and manufacture situations to enable them to be with one or two children they have already started making friendships with.
So, difficult days, but all good on the school front.
This is a very unusual story Im sad to say, as many families with TS children going through the school system are having a lot of difficulties right now. Lack of understanding and willingness to think outside the box, lack of funding for additional support.
I am very very grateful for our situation right now.
Friday 3 February 2012
Curious.....
Today I was made a ware of a peculiar situation in America.
15 Teenagers at one school have gone down with TS like symptoms, on top of that another 2 teenagers of the same age in a town nearby have developed it too. Whilst watching a youtube video of one of the brave teenagers she had written a comment by it to say that a lady in her town has now also developed these symptoms. How odd is that? No one is saying its definately tourettes because its too soon to say, but watching her video it looks to me like TS. Now, she could be unfortunate and have developed it, it happens at that age too. But 15 of them? Unlikely I would say.
Seems from the article that the school is built on a site where there was a large chemical spill back in the 70s and Erin Brokevitch is on the case. Remember the film? She has tested the land for contamination. The other area she is looking into is vaccine as all the teenagers are local and are the same age.
This led me to thinking about the boys, when they had their MRI injection. Ben had a dreadful reaction and within an hour or so started screaming and wouldnt stop. This was very unlike him, he was a placid happy baby. Wthin a couple of hours he had purple spots all over his legs and torso that were exactly like the melangitis spots. He ended up in hospital over the weekend for observation. He was tested for melangitis but it was negative. They told me this could not possibly be a reaction to the vaccine. Oh no? one hell of a blooming co-incidence wouldnt you say ! Over the coming weeks these spots would appear and disappear but there were always a handful of them on his body. Joe also developed these spots too. they had a couple of blood tests. No one knew what they were or why they were coming up. Well Im pretty sure I know why - it was the vaccine - which part of it, who knows. But its too much of a co-incidence that they had the melangitis vaccine at the same time.
Now, another TS mum I speak to said her son, (doesnt have TS incidently) but does have ADHD and OCD had a severe reaction in the doctors surgery to the MRI jab and had to have emergency treatment there and then and was rushed to hospital.
We both feel that whenever we have been to appointments and have had to fill out forms re the boys history, or discussed it, that these events are skirted over. I tried to push the point once with the consultant but it was just ignored.
I absolutely believe there to be a link. the boys were also premature as were a lot of other children with TS and other disorders. Perhaps they are just not developed enough to have these vaccines.
I am going to labour this point when I next see the consultant and ask what research has been done. My gut feeling is none.
I am going to be very interested to see the findings of the teenagers in the states because the other thing I have felt since the boys developed TS was that it could be down to environmental factors. There are so many chemicals used inside the house and outside the home.
Its a fact that some childrens and adults tics get worse when they go swimming due to the chlorine. Another friends little boy could not go near new carpet as the chemicals that the carpet was treated with sent him into having tic attacks.
I am going to do some searching over the coming weeks to see what research if any has been done in these areas.
I am going to see if I can track down Erin Brokevitch's website and send her an email about the vaccine experience.
If I find out anything interesting i will update this post.
15 Teenagers at one school have gone down with TS like symptoms, on top of that another 2 teenagers of the same age in a town nearby have developed it too. Whilst watching a youtube video of one of the brave teenagers she had written a comment by it to say that a lady in her town has now also developed these symptoms. How odd is that? No one is saying its definately tourettes because its too soon to say, but watching her video it looks to me like TS. Now, she could be unfortunate and have developed it, it happens at that age too. But 15 of them? Unlikely I would say.
Seems from the article that the school is built on a site where there was a large chemical spill back in the 70s and Erin Brokevitch is on the case. Remember the film? She has tested the land for contamination. The other area she is looking into is vaccine as all the teenagers are local and are the same age.
This led me to thinking about the boys, when they had their MRI injection. Ben had a dreadful reaction and within an hour or so started screaming and wouldnt stop. This was very unlike him, he was a placid happy baby. Wthin a couple of hours he had purple spots all over his legs and torso that were exactly like the melangitis spots. He ended up in hospital over the weekend for observation. He was tested for melangitis but it was negative. They told me this could not possibly be a reaction to the vaccine. Oh no? one hell of a blooming co-incidence wouldnt you say ! Over the coming weeks these spots would appear and disappear but there were always a handful of them on his body. Joe also developed these spots too. they had a couple of blood tests. No one knew what they were or why they were coming up. Well Im pretty sure I know why - it was the vaccine - which part of it, who knows. But its too much of a co-incidence that they had the melangitis vaccine at the same time.
Now, another TS mum I speak to said her son, (doesnt have TS incidently) but does have ADHD and OCD had a severe reaction in the doctors surgery to the MRI jab and had to have emergency treatment there and then and was rushed to hospital.
We both feel that whenever we have been to appointments and have had to fill out forms re the boys history, or discussed it, that these events are skirted over. I tried to push the point once with the consultant but it was just ignored.
I absolutely believe there to be a link. the boys were also premature as were a lot of other children with TS and other disorders. Perhaps they are just not developed enough to have these vaccines.
I am going to labour this point when I next see the consultant and ask what research has been done. My gut feeling is none.
I am going to be very interested to see the findings of the teenagers in the states because the other thing I have felt since the boys developed TS was that it could be down to environmental factors. There are so many chemicals used inside the house and outside the home.
Its a fact that some childrens and adults tics get worse when they go swimming due to the chlorine. Another friends little boy could not go near new carpet as the chemicals that the carpet was treated with sent him into having tic attacks.
I am going to do some searching over the coming weeks to see what research if any has been done in these areas.
I am going to see if I can track down Erin Brokevitch's website and send her an email about the vaccine experience.
If I find out anything interesting i will update this post.
Thursday 19 January 2012
More positive today
Hi - after feeling in the depths of despair last night, feel a lot better this morning.
Thankfully the boys were ok this morning and got to school on time. Helped by the fact that the canteen have an 'American Fast Food' day - not fast food I might add, but lovely homecooked versions.
Little bit worried at the comfort food provides for the boys at the moment but we will have to tackle that issue in the future. Right now we go with what works.
Hoping they have had a good day, Joe making coleslaw so looking forward to that. :)
Thankfully the boys were ok this morning and got to school on time. Helped by the fact that the canteen have an 'American Fast Food' day - not fast food I might add, but lovely homecooked versions.
Little bit worried at the comfort food provides for the boys at the moment but we will have to tackle that issue in the future. Right now we go with what works.
Hoping they have had a good day, Joe making coleslaw so looking forward to that. :)
Wednesday 18 January 2012
Staying positive
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.
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.
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.
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