|Posted by Kay Mawson on December 8, 2012 at 8:40 AM||comments (0)|
Hi to everyone and Welcome to the newest members.
Its been a busy time so I apologise as it has most certainly been a while since I updated the site. Andrew is doing well and settled back into the new year of school. His seizures calmed down but the anxiety he suffers from has taken a new direction causing him some chronic symptoms relating to Irrital Bowel Syndrome and with that he also suffers excessive tiredness. He endures colic cramps almost daily and on a various scale but medication is now at hand to help him cope.
We're getting ready for christmas now....how about you? Its a blessing to know that he will have a break. Time to relax and have respite from his anxiety although he does have triggers all around him; not just through school now.
I dreamt the other night that I re-appeared on ITV Daybreak again. They rang me a few months ago asking if I would and this time last year we were getting excited for our trip to London and the ITV studio. Maybe the memories were swimming in my mind, triggering the dream but I really hope that I can get to do something like that again as it seems that the heightened interest in the condition has slipped away. Im sure if we keep this going and everyone stands together, we'll stand tall, proud and loud.
Have a lovely christmas everyone x
|Posted by Kay Mawson on July 12, 2012 at 9:05 AM||comments (0)|
Andrews seizures decreased in numbers to about 100 per day and are now more minimal in appearance than before as he has learned to cope much better with them by responding to the physical warning signs more effectively. My theory for the reduction in numbers is that Andrew is now allowing for levels of anxiety to flow through. Originally, it was suggested that the seizures were a way of protecting Andrew from anxiety as a cut off mechanism; shutting his body down everytime it sensed anxiety building. It seems that Andrew's mind has allowed for some anxiety to flow through and therefore not needing to protect as often as before. Along with growing levels of anxiety is also still the problem of diarrhoae attacks which have now begun to occur outside of school.
Andrew's psychiatrist asked him to take control of a diary. He was asked to record the distruption his condition caused to his daily routine for the 7 days throughout his week. It appeared from the collection of data that Andrew had detailed, that anxiety was at its worst during issues relating to his personal/educational performance. For example, Andrew recorded that he had to leave class to see the nurse after taking quite unwell with levels of extreme anxiety after receiving his Biology Exam Result. A result that was a little below other subject results he had already received. A further example, Andrew had recorded severe diarrhoae and anxiety before leaving home to score for our local cricket team. When Andrew discussed this further, he revealed that one of the adult players had criticised Andrew's writing and lack of tidiness within the score book and had mocked him infront of other cricketers. These are just two examples but the collection all appeared to link to performance.
I have explained to Andrew on a number of occassions that i strongly believe that you are born with that switch on or off !! So... you may be great with computers but dont know how to handle pastels and paint brushes. You may be able to design wedding dresses but won't have a clue how to sing. You either have that area of your brain switched on or you dont. Ive argued that schools should not pressure children to all be in-line with one another because what happens if your maths switch is on but your physics one isn't? Andrew's school makes each child learn a musical instrument. Are we all musical?
Evidence suggests that musicians have a certain enlarged area of the brain, whereas those who can hold no tone have this part of their brain shown as smaller. i.e. switched on Vs switched off .
Should children really be left feeling inferior about their performance due to biological mapping within the brain; something beyond their control?
|Posted by Kay Mawson on May 31, 2012 at 6:35 PM||comments (0)|
I never thought I would see my son in such a bad state again. My anxiety is growing deeper as his gets worse by the day. He's having such sever diarrhoea attacks... yes i call them attacks because he is struck with immediate intense pain which he believes could have him rolling on the floor and he also feels he has very little time to make it to the toilet. How much more is he meant to take?
The school have been great. Andrew is managing to get to school although two days ago, the diarrhoea was so bad, and he was so upset, I took him to school but arranged a hand over with the Head Of House at the school. Andrew had told me after a previous appointment drop-off that he had felt the urge t o run after me. Following his recovery from the first school phobia and i suppose things he learnt psychologically, he was able to control himself. I also think age is a factor too. He is now three years older than when school phobia first made its appearance. However, this time, coupled with the upset, heighted issues, I had some doubts towards him managing and so made these arrangements. He did wonderfully well.
How on earth are you surviving every day Andrew. It cuts me up seeing you this way. Knowing your having 300+ seizures per day in lessons, hitting your head off your desk, buddied everywhere, fear of accidents because of this latest issue. You look so drained and tired. Andrew has what I call his 'Homer Simpson' the un-shaven shadow about his upper - lip and around the mouth. Andrew gets a grey shadow around this area when he's exhausted..... his Homer Simpson. He now has it every night and quite early.
Today I rang the GP - what do i do to help Andrew with these diarrohea attacks? so we have an appointment to see her.
I rang the psychiatrist - He's worse within the two days since we last saw you, plus hes not telling you everything? What do we do now. Please help him? We have an appointment to go back and in the mean time, please read up on the Beta Blocker - Propranolol.
I talked with a dead friend about the diarrohea attacks and the pain. We started to talk about IBS - Irritable Bowl Syndrome. Ive looked up the symptoms and I froze.
Needless to say, the stress and worry got to me today and a tear met with my cheek.
|Posted by Kay Mawson on May 13, 2012 at 8:20 AM||comments (1)|
Not something I ever thought I would say after a pretty stable time with Andrew but on 1st March 2012, I received a call from school to say Andrew had fainted. I collected him from school and chatted with him only for him to explain he hadn't fainted. He was trying to tell me something more but as a typical mother, I told him he was home, got him into bed, tucked him up with TV for the remainder of the day.
The following day, he came home from school only to tell me it nearly happened again! We had an eventful weekend and decided to visit the GP. The GP asked me to contact the school to do some fact finding. After gaining further information, it turned out Andrew had had a seizure.
The number of seizures grew each day. They last just a matter of seconds and would start with a deep stare that Andrew would described as a daydream. When the daydream ended, his whole muscle tone went and he collasped to the floor regardless of standing, sitting, lying etc. He was starting to have falls and hit and hurt himself, although not too severely although this was a worry. The school asked Andrew stay home until he had an appointment with a consultant to find out what was going on. In the meantime, Andrew arrived at A&E 3 times because the number of seizures per day were still climbing.
Eventually we got to the bottom of it. Andrew is suffering from Psychogenic Non Epileptic Seizures. Basically instead of his brain misfiring electrically like in the case of epilespy, he mis-fires psychologically causing the same response only he has a greater number of seizures. The most that were counted using a 'clicker' was 653 in one day.
Andrew condition is related to his underlying Anxieties. As the days and weeks have passed us by, he had managed to get in touch with his feeling and has managed to tell me its all the same feelings as school phobia only he doesn't doing the kicking and screaming. Instead his body cuts out by way of seizures as a protective mechanism. A bit like the Tourette's Syndrome but instead of yelling, its a physical response. He can hold them like a sneeze but eventually they build up and Andrew will have a cluster and can become unmanagable.
Andrew has lost his independence, privacy and is 'buddied' around school all day, for safety reasons. He is seen as an innocent disruption at school although still manages most classes. A meeting is scheduled with CAMHS and the school within the next couple of weeks to discuss a way forward to maintain Andrew at school as his seizures continue in dramatic numbers.
As a mother, I have calmed down with this new condition although worry deeply, but Im not coping which I wasn't at first. We're starting to find our way around coping. Using an inflatable travel pillow around andrew's neck for baths and wearing trunks whilst I sit with him as relaxation bring on seizures; allows them through. We have a sit down tap shower to lessen the risk of falling. We use a wheelchair for long/lengthy shopping trips so he doesnt fall infront of other shoppers and cause a scene every two minutes and feel embarassed. A wheelchair means he's seated already, can have seizures and not have to hold them in and it is discrete - no one stares at him or makes a fuss. He is much more relaxed shopping this way. However, I have been judged by two professionals so far for stating this use of a wheelchair. One professional went as far as to say "why do you want a disabled child so much". She must have read about Muchausen's by Proxy and thought she'd diagnosed me!!! Live a day in our shoes and tell us you wouldn't think it was a great idea!!!
We're plodding on. and Im pushing the website, adverts, business cards, links, twitter etc as hard as I can to give you all a voice. Keep close behind me as it will happen. Dont forget to do your bit..... copy and paste the website, facebook link, twitter link etc. and drop it in forums, chats - push it on.:)
|Posted by Kay Mawson on April 27, 2012 at 12:10 AM||comments (0)|
RE: DOCUMENTARY IDEA ON SCHOOL REFUSAL/SCHOOL PHOBIA
I work for Wild Pictures - www.wildpictures.co.uk - we specialise in high end, sensitively made documentaries for the major broadcasters in the UK.
I am interested in learning more about 'school refusal' and finding stories of children that are currently affected by emotionally-based school refusal/phobia along with their families.
First a bit about who we are and what we do....
We make considered, serious public interest films and all our films from the three prison series - 'Strangeways', 'Wormwood Scrubs', 'Holloway' to 'Fraud Squad' which shadowed Detectives as they investigate one of the biggest share frauds in Britain and Smugglers (ITV1) secured great audiences.
Recently aired series include' Baby Hospital' – about a neo-natal unit in Liverpool’s Women’s Hospital. Most recently we’ve made 'Panorama: Britain’s Secret Alcoholics with Alistair Campbell' on BBC1 and 'Fraud Squad 2' inside the City of London Police and their elite fraud team and ITV1s 'The Real Thumbelina' – about a little girl with a rare form of dwarfism called Russell-Silver Syndrome and the attempts by her family to get answers.
I'd love to hear from you - if you have been affected by school phobia/school refusla then please do get in touch in absolute confidence. Please take a look at our website to get a flavour of the kinds of programming we make.
If you're interested - then please email me direct at [email protected] with a brief history of your experience, the issues you are facing and what is going on currently for you and any plans for treatment etc.
Look forward to hearing from you
Head of Development
|Posted by Kay Mawson on January 5, 2012 at 5:45 PM||comments (0)|
The Interview 3rd January 2012
|Posted by Kay Mawson on December 28, 2011 at 6:45 AM||comments (0)|
A little over a year since writing for Anxious Times with Anxiety UK and I have heard from Terri again with some bigger news. ITV daybreak would like to cover School Phobia as an item on their show and would like to interview Andrew and myself about our experience of the condition. This is an amazing opportunity to raise awareness. Something I have dreamt of for so long. I have felt so compelled for such a long time to do more but so restrained and limited as what i could do. The ball i believe, began to roll after the Anxious Time publication and I hope the ball is now picking up speed.
I hope that this opportunity will give coverage to help support parents, educate educators and give some relief and belief towards those young people who are going through the tormented experience of School Phobia. You have to understand, this is a condition where children cannot come and show you spots on their tummy, or tell you their ears hurt or present with a runny nose. They have nothing to show you or tell you. They dont understand themselves!!
My promise is to keep going and do my best to push this...... fight as hard as i can to raise awareness as far as i can take it. I know that Andrew and myself were subjected to numerous judgements, assumptions and tremendous pressures; like living with School Phobia wasn't bad enough. Hopefully raising awareness will reduce such matters for you ! I will try my best
|Posted by Kay Mawson on December 7, 2010 at 2:36 PM||comments (0)|
Happy New Year 2011
from Kay, Andrew
This Christmas, why not toast the children suffering from school phobia/refusal .... I will !
|Posted by Kay Mawson on December 7, 2010 at 2:30 PM||comments (0)|
Things are difficult with money, life and the kids but we're trying to get excited for Christmas. The Christmas decorations are up :Dand the children are getting more and more excited :D. They're opening their advents everyday and I'm happy that they're happy :).
I'm re-assured for now that I made the right decision for Andrew and for Sarah. My worry is we may have to move house thanks to my ex-husband which may distress them both and then Andrew starts the comprehensive school (another change of school) September 2011. Let's hope 2011 will be great and not let my worries come true x
|Posted by Kay Mawson on December 7, 2010 at 2:25 PM||comments (0)|