We had a very successful statement review today and learned that for the next 6 months (until next statement review) the boys will both receive full time 1:1 support. We had a report from a tourettes specialist and Occupational Therapy all of which made some very useful recommendations for school.
New school are requesting notepads to help with the boys writing in literacy lessons and OT are recommending 3 x 15 minute sessions daily to help combat the sensitivities they have. They also have lax ligaments in their fingers which makes it difficult to write and causes pain when writing longer tasks. There will be exercises recommended to help with this.
I would urge anyone with a child who has tourettes and any associated sensitivities to pursue OT. I would also urge you to look at your child to see if there are any ASD 'traits' as we feel the tourettes has masked this over time. We have all put the 'quirkiness' down to the tourettes whilst all along there could have been learning strategies used in teaching children with ASD which would have helped reduce anxiety and therefore in turn reduce the tics. The tics for my two seem to be driven by fear, anxiety, difficulty processing information, sensitivities. If you can tackle some of these then hopefully in turn the tics could reduce.
It is early days for us but I will update the post with how we get on.
We are taking a trip to Torquay this weekend to get the mouthsplints checked out. I am hoping we can do something for Joe as his tics seem to be on the increase at the moment. I think this is all linked with the change of school and the anxiety it is provoking.
Ben is using his a little and feels it helps - only time will tell.
Monday, 11 July 2011
Friday, 8 July 2011
Looking forward to summer holidays !
Well mornings in our house are always like treading on eggshells !!
Desperately hoping the boys dont kick off against each other for anything otherwise its game over.
Very very tired now as end of term, lots of things going on. Despite going to bed at 8 and getting up at 8 they are still very tired.
Ben this morning tried on about 8 polo shirts and couldnt wear any of them. Seems to have become sensitive to the material so I had to dash off to supermarket this morning in the hope they would have some school shirts - thankfully they did. After finding a vest in the bottom of a wardrobe (because he didnt want his belly showing through the shirt) we finally got to school. The things we have to do !!
Had their new school induction day yesterday mixed feelings from both of them I think. As with all the kids at the moment sad about leaving primary but quite excited at the prospect of big school. For the boys though its twice as difficult as they have their tourettes to manage and they have none of their friends from primary going to the new school. I really feel for them but we are convinced its the right school for them.
Joe is so worried that he will lose all his current friends and that they wont want to see him any more. He cried twice while he was there yesterday - poor kid.
Not only does the tourettes affect them directly with the physical side of it, but indirectly too, having to go to a different school, having a specialist talk to the whole of year 7 about their condition which they understand is necessary but it cant be nice knowing someone is telling a whole load of people about your problems, problems you just wish would go away !
To top it all Bens best friend is moving to Australia in the summer, a very emotional time for us all I think :(
Joe asked this morning if his friends could sleep over on the last day of the term in the big tent in the garden. Lets hope the weather is good so they can do that. Would be a nice end to the term, and remind him that his friends live close by and providing he works hard, he will keep those friends.
Desperately hoping the boys dont kick off against each other for anything otherwise its game over.
Very very tired now as end of term, lots of things going on. Despite going to bed at 8 and getting up at 8 they are still very tired.
Ben this morning tried on about 8 polo shirts and couldnt wear any of them. Seems to have become sensitive to the material so I had to dash off to supermarket this morning in the hope they would have some school shirts - thankfully they did. After finding a vest in the bottom of a wardrobe (because he didnt want his belly showing through the shirt) we finally got to school. The things we have to do !!
Had their new school induction day yesterday mixed feelings from both of them I think. As with all the kids at the moment sad about leaving primary but quite excited at the prospect of big school. For the boys though its twice as difficult as they have their tourettes to manage and they have none of their friends from primary going to the new school. I really feel for them but we are convinced its the right school for them.
Joe is so worried that he will lose all his current friends and that they wont want to see him any more. He cried twice while he was there yesterday - poor kid.
Not only does the tourettes affect them directly with the physical side of it, but indirectly too, having to go to a different school, having a specialist talk to the whole of year 7 about their condition which they understand is necessary but it cant be nice knowing someone is telling a whole load of people about your problems, problems you just wish would go away !
To top it all Bens best friend is moving to Australia in the summer, a very emotional time for us all I think :(
Joe asked this morning if his friends could sleep over on the last day of the term in the big tent in the garden. Lets hope the weather is good so they can do that. Would be a nice end to the term, and remind him that his friends live close by and providing he works hard, he will keep those friends.
Monday, 27 June 2011
Still going well
Things are still going well for Joe and Ben at school, despite still having tics daily which take them out of the class at times, they are managing to enjoy school and remain there for the whole day. This is showing in their confidence and their determination in the mornings to get to school, even if they are feeling ticcy. In the past it would have been very difficult to get them there if the day started badly. So nice for them to be involved in daily school life. They have managed a concert at a secondary school walking there and back which would not have been possible a few months ago.
Both boys have received their mouthsplints which is part of a trial but unfortunately they still dont seem to be doing anything. Nothing like the results we saw in the surgery so guess its another trip to Torquay to get them checked out. I am hoping they are not fitting correctly - as then we still have hope that we can get the results we saw a few weeks ago.
Secondary school are being fantastic. We had a short visit after school the other day, boys wandered around with map for 20 mins to get their bearings. They were given blazers to try on which they enjoyed so we know what size to buy now ! I have learned that 4 TAs will attend our primary school for 3 days to shadow the existing TAs and get to know Joe and Ben. This is fantastic news and we are hoping this can happen before their day visit on the 7th as it would help their anxiety to know a couple of faces. Joe was very upset at having to change school choice at the last minute and although he is not ecstatic he is definately coming round and does not comment when the school is mentioned. He is looking forward to joining the cricket and tennis after school clubs. Ben accepted it from the beginning but did comment that it might take them a while to make friends as they have tourettes. When asked why that should be he said he and Joe dont know how to act around people that dont know them. Bless.
The other school that were so rude and offputting are performing a show which the year 6 kids have been invited to. Ben said he didnt want to go, didnt want to set foot in it as he didnt want to see the headteacher who has been so mean. He has a point, dont think I would want to go either. However I explained that the whole year group are going so he will be fine.
Today they are setting up a little stall outside school at 3.30 to sell lemonade, homemade cakes (made by Joe last night) and ice pops. Very enterprising :) Dell boy and Rodney spring to mind !!
Both boys have received their mouthsplints which is part of a trial but unfortunately they still dont seem to be doing anything. Nothing like the results we saw in the surgery so guess its another trip to Torquay to get them checked out. I am hoping they are not fitting correctly - as then we still have hope that we can get the results we saw a few weeks ago.
Secondary school are being fantastic. We had a short visit after school the other day, boys wandered around with map for 20 mins to get their bearings. They were given blazers to try on which they enjoyed so we know what size to buy now ! I have learned that 4 TAs will attend our primary school for 3 days to shadow the existing TAs and get to know Joe and Ben. This is fantastic news and we are hoping this can happen before their day visit on the 7th as it would help their anxiety to know a couple of faces. Joe was very upset at having to change school choice at the last minute and although he is not ecstatic he is definately coming round and does not comment when the school is mentioned. He is looking forward to joining the cricket and tennis after school clubs. Ben accepted it from the beginning but did comment that it might take them a while to make friends as they have tourettes. When asked why that should be he said he and Joe dont know how to act around people that dont know them. Bless.
The other school that were so rude and offputting are performing a show which the year 6 kids have been invited to. Ben said he didnt want to go, didnt want to set foot in it as he didnt want to see the headteacher who has been so mean. He has a point, dont think I would want to go either. However I explained that the whole year group are going so he will be fine.
Today they are setting up a little stall outside school at 3.30 to sell lemonade, homemade cakes (made by Joe last night) and ice pops. Very enterprising :) Dell boy and Rodney spring to mind !!
Thursday, 16 June 2011
time to move on
At last we have a school for the boys, a school that truly believe 'every child matters', a school that have an ethos of caring which comes across in all the staff we have met so far.
Its a short distance away by car, and the boys will have to make some new friends but the contrast between this school and the previous one is huge.
We can at last start to move forward and it is such a relief. Thank god there are some people in the education system that are not just interested in results and their ofsted report, people that are still truly interested in the children. Thank you Edgbarrow, we look forward to our boys attending your school.
Yesterday Joe managed to spend a whole day at the Kwik cricket festival and played in the schools B team. All three teams got into the finals - great day. Sadly Joes team lost by 2 runs but he was only slightly disappointed. For Joe this was a huge achievement - 3 months ago we would not have believed this day was possible his tics were so bad, and confidence so low. He went to school this morning feeling extremely tired and ticcy but very proudly wearing his silver medal. He bowled really well getting several wickets for his team. Couldnt help but write him a little poem.
Its a short distance away by car, and the boys will have to make some new friends but the contrast between this school and the previous one is huge.
We can at last start to move forward and it is such a relief. Thank god there are some people in the education system that are not just interested in results and their ofsted report, people that are still truly interested in the children. Thank you Edgbarrow, we look forward to our boys attending your school.
Yesterday Joe managed to spend a whole day at the Kwik cricket festival and played in the schools B team. All three teams got into the finals - great day. Sadly Joes team lost by 2 runs but he was only slightly disappointed. For Joe this was a huge achievement - 3 months ago we would not have believed this day was possible his tics were so bad, and confidence so low. He went to school this morning feeling extremely tired and ticcy but very proudly wearing his silver medal. He bowled really well getting several wickets for his team. Couldnt help but write him a little poem.
It brought me great joy to see my boy
Representing his school at cricket
He fielded ok and batted ok but
Bowled well taking many a wicket
To the final they went, good wishes we sent
Despite being cold and wet
They did their best and needed a rest
The runs they didn’t quite get
A little bit sad, but still very glad
A silver medal he would get
It would’ve been nice to win he said with a grin
He was so happy - no reason to fret
He was up this morning, so tired and yawning
But off to school he sped
Ticcing away and wanting to stay
Im looking forward to PE he said !
So so nice to post something happy and positive on here. Lets hope this continues.
Wednesday, 8 June 2011
Monday, 6 June 2011
and it gets even better
Requested some follow up from SEN dept today so we can make an informed decision following our meeting at Edgbarrow school tomorrow. They have spoken to the Deputy head of 'said' school and he has said he will come back with his view on the report and what they can do around space issues at the end of the week. I have requested SEN dept go back to him and say that from our point of view as parents this is not acceptable.
Lets do a simple timeline for this shall we?
November 2010 Applied for place - application is sent to school with copy of statement and accompanying reports all of which state the boys need a small comfortable area to retreat to together with all the other issues they face on a daily basis.
Feb 2011 Granted place, statement updated to show secondary school.
March 25th meeting held with head teacher where she voiced her concerns around space issues (among many other concerns !!!
April 20th Meeting with SEN Manager - who stated they would have to do an environmental audit to review their current use of space.
April 27th Annual statement review held at primary school with many professionals including 2 representatives from secondary school. Again it was stated that an environmental audit would have to take place.
May 13th Environmental Audit completed
3 weeks later (all but one day to be fair to them !) report was received.
Deputy head contacted for his views - no response.
Deputy head contacted 6th June for response to the report and what discussions they have had.
Told SEN dept he would get back to them by the end of the week
Acceptable? !! NO NO NO - Not in anyones imagination.
This school, knowing they have given places to my boys have done absolutely nothing between 25th March and 6th June around the space issue and the many other concerns they raised. They have not communicated with us as a family following the meeting where they raised so many concerns. They have clearly not looked into how they will accommodate these boys even though they have places and statement requirements. They are clearly not going to. I think they are playing a strategic game, the longer they hold off the more likely we are to go elsewhere.
If I had not escalated this to get the SEN manager on board working very hard for us what would the school have done? Nothing, Sweet Nothing. I truly believe our boys would have turned up on day one and been a compete inconvenience to them because they dont fall into their strict processes and procedures. I think they would have winged it and hoped for the best. This the supposedly best school in Bracknell ? This from a Christian school which claim to be inclusive? Claim to rise to a challenge? This challenge is
clearly one to difficult for them to rise to. Shame on you.
Lets do a simple timeline for this shall we?
November 2010 Applied for place - application is sent to school with copy of statement and accompanying reports all of which state the boys need a small comfortable area to retreat to together with all the other issues they face on a daily basis.
Feb 2011 Granted place, statement updated to show secondary school.
March 25th meeting held with head teacher where she voiced her concerns around space issues (among many other concerns !!!
April 20th Meeting with SEN Manager - who stated they would have to do an environmental audit to review their current use of space.
April 27th Annual statement review held at primary school with many professionals including 2 representatives from secondary school. Again it was stated that an environmental audit would have to take place.
May 13th Environmental Audit completed
3 weeks later (all but one day to be fair to them !) report was received.
Deputy head contacted for his views - no response.
Deputy head contacted 6th June for response to the report and what discussions they have had.
Told SEN dept he would get back to them by the end of the week
Acceptable? !! NO NO NO - Not in anyones imagination.
This school, knowing they have given places to my boys have done absolutely nothing between 25th March and 6th June around the space issue and the many other concerns they raised. They have not communicated with us as a family following the meeting where they raised so many concerns. They have clearly not looked into how they will accommodate these boys even though they have places and statement requirements. They are clearly not going to. I think they are playing a strategic game, the longer they hold off the more likely we are to go elsewhere.
If I had not escalated this to get the SEN manager on board working very hard for us what would the school have done? Nothing, Sweet Nothing. I truly believe our boys would have turned up on day one and been a compete inconvenience to them because they dont fall into their strict processes and procedures. I think they would have winged it and hoped for the best. This the supposedly best school in Bracknell ? This from a Christian school which claim to be inclusive? Claim to rise to a challenge? This challenge is
clearly one to difficult for them to rise to. Shame on you.
Wednesday, 1 June 2011
Oh it just gets better !!
3 weeks tomorrow and still no Environmental Audit report from SEN. Last we heard was they wanted to 'run it past' the school before sending it out to us. Mmmmmm wonder why? Well its now half term and so nothing is likely to happen. Wonder why the school did not return it the day it was sent or even the day after? Oh I know - lets let them wait longer, more likely to withdraw their places.
This audit was requested by SEN team because the school insisted they had no space to use for the boys as a calming down area. The information is needed by us to make our final decision on whether or not the school is suitable. Well it clearly isnt - I would not send the boys there now if they paid and begged me. So much for the church school being inclusive - what happened to every child matters?. Ours clearly dont matter to them and I dont believe they ever would.
update - received the report today - doesnt say anything we dont already know. Would have expected some kind of input from the SEN department as to their views on what can or cant be done with the resulting information. Guess will have to chase that too. There are a couple of rooms in an old house in the grounds of the school, used to be the headmeasters house. Evidently these rooms are used for small group teaching, exams, and for teachers to quietly plan work in when not teaching. These are the only rooms that they feel would be suitable, but are not suitable if you see what I mean. Whilst I understand the lack of space, if J&B were already at the school and developed this condition they would have to accommodate them - there would be no question - they would not suddenly be able to use the excuse of no space as they would be told in no uncertain terms 'find some' as per the disability act. No doubt the teachers would find somewhere else like the staff room to quietly plan work should J or B need to use one of the rooms. Guess thats too difficult for them to work out for themselves. Shame they are not a bit brighter, shame they cant take their blinkers off. God help any SEN child that needs support above and beyond what this school deems to be 'their way'. Its clearly their way or the highway. I thank god I will not have to deal with these morons on a frequent basis.
This audit was requested by SEN team because the school insisted they had no space to use for the boys as a calming down area. The information is needed by us to make our final decision on whether or not the school is suitable. Well it clearly isnt - I would not send the boys there now if they paid and begged me. So much for the church school being inclusive - what happened to every child matters?. Ours clearly dont matter to them and I dont believe they ever would.
update - received the report today - doesnt say anything we dont already know. Would have expected some kind of input from the SEN department as to their views on what can or cant be done with the resulting information. Guess will have to chase that too. There are a couple of rooms in an old house in the grounds of the school, used to be the headmeasters house. Evidently these rooms are used for small group teaching, exams, and for teachers to quietly plan work in when not teaching. These are the only rooms that they feel would be suitable, but are not suitable if you see what I mean. Whilst I understand the lack of space, if J&B were already at the school and developed this condition they would have to accommodate them - there would be no question - they would not suddenly be able to use the excuse of no space as they would be told in no uncertain terms 'find some' as per the disability act. No doubt the teachers would find somewhere else like the staff room to quietly plan work should J or B need to use one of the rooms. Guess thats too difficult for them to work out for themselves. Shame they are not a bit brighter, shame they cant take their blinkers off. God help any SEN child that needs support above and beyond what this school deems to be 'their way'. Its clearly their way or the highway. I thank god I will not have to deal with these morons on a frequent basis.
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