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.
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