GCSEs & Parallel Universes

Somewhere in a parallel universe it is GCSE results day.  In this parallel universe my son had to be woken up to check his results - because no matter what universe, sleep is more important than anything.  He passes almost everything, because in both universes he is bright and academic.  He scrapes through maths, his most hated subject and flies through history and science.  We have a celebratory breakfast and start texting friends and family to let them know.  We are relieved because it was always going to be a tough year with him doing GCSEs and his sister doing A Level exams - the stress levels in this house were going to be high.  But we made it through.  He messages his friends and arranges to meet up later to celebrate and then he wants to go back to bed, but we go to visit his Nan and Grandad.  There's a family tradition of doing this ever since I was a kid - everyone goes and we have cake and coffee and celebrate together, congratulations cards are given out and no doubt Nan has got him a packet of Jelly Babies, his favourite.  We talk about plans for college and laugh that it's only two more years before he goes to Uni and he'll have to start thinking about it soon.  Later we order pizza, pizza is his chosen meal for any celebration and we let him have a large one covered in as many topping as he wants!  We open a bottle of champagne together and take photos and laugh.  We are relieved he did it and we are on to the next stage.  

Today my head is full of what ifs and this parallel universe.  I feel equally ridiculous and upset.  My son is here, he is alive nothing else really matters - there are certainly those who are not so lucky and those who would give anything for the life we do have.  But this is my pain, my guilt. 

It's two years since he came out of adolescent psychiatric hospital.  Eighteen months since his special school said they could no longer meet his needs and he had to leave.  Eighteen months of trying to juggle a tutor for English, a tutor for maths and science, teaching him GCSE history myself, occupational therapists, psychiatrists, respite...but mostly, for him, eighteen months of isolation. He has one friend who he has seen a handful of time over the year and a half, but the gap between them grows and he is lonely.  He was supposed to take his English and History GCSEs this year but the school we asked to register him didn't...they didn't tell us until it was too late, so even though he could have got predicted grades like everyone else this year he didn't.  And we tell him it doesn't matter, that he can try in November, but it does matter.  And I'm not convinced November exams will happen.  We know he cant go anywhere to take exams, it's too much, he's too overwhelmed by anything different or by people (his absolute fear of being killed at school is why he ended up in hospital).  Last month we found out that he can take exams at home, as long as he is registered and the place that registers him sends two invigilators to our house he can do it.  It felt like a life-line, but no school will register him, not even when the Local Authority ask them and we're not studying the right exam board for the homeschool exam centres.  So we are floating along, hoping for some sort of miracle, when the reality is that he probably wont be able to take his exams.  I tell myself exams don't matter, there are other things and other ways.  But today they matter.  Today he knows it should have been his turn, he feels like even more of a failure that ever.  He doesn't plan for his future anymore, he wants to die young so the pain goes away - that's his plan.  

So in our universe I let him sleep (he doesn't sleep at night anymore), and later we will go for a walk and I'll ask him how he is and I'll reassure him.  He'll chat to his little sister (with her own mental health problems) and we will be distracted.  His older sister, who passed her A Levels, will carry on packing for Uni and will take the first step into her future.  And tomorrow it will feel better, there will be no reminder of the parallel universe.

3 Years Ago Today!

This time exactly three years ago today I was a nervous wreck!

I had split up from my husband of 11 years six months previously and had dived head first into internet dating.  I felt I had wasted too many years in an unhappy and abusive marriage and I wasn't going to waste another second.  I had been on a few dates and had even dated someone for a few weeks - all tentatively and a great way of discovering there was a world outside of the miserable existence I had been in for so many years.

But three years and one week ago I had got in contact with someone I'd seen online.  I just had this feeling about him.  It was as if I knew him, although we had never met.  We emailed and texted non-stop for a week - he was more keen than me to meet.  I worried that once we met he wouldn't feel the same about me and that would be the end of something that was already wonderful. We became Facebook friends which was a great way to suss out his family and friends and see the kind of person he was.  After this I gave in and agreed to meet.  However, I had no child care available and I did something that I can't believe I did now...I agreed to let him come to the house.  We had a standing joke about him being an axe murderer with enough room in his boot for a body...in hindsight it was crazy and irresponsible...but at the time I had no doubts at all.  We agreed to have a safe word - 'flamingo', and if either of us said it, it would mean we were definitely interested in the other person.  If we didn't, then there were to be no hard feelings but we obviously did not fancy each other.

I let the kids have a sleepover together and told them I was watching Dr Who - the eldest was so scared of that she definitely wouldn't leave the room and come downstairs.  I told one friend what was happening and agreed to text her if everything was fine.

  And then I waited - well showered, bathed, lotioned, shaved up to my knees (there was no need to shave the rest of my legs, it wasn't going to be that kind of date!).

 At 8.30 - once the kids were asleep I saw a car pull up outside and I almost passed out with nerves.  He texted me so he didn't have to ring the doorbell and disturb the kids - all very furtive and secret.  I let him in - was delighted at how gorgeous he was and scurried off to make a cup of tea in the kitchen while he took his shoes off (a good sign of a house-trained male!).

  I was literally shaking and trying to make polite conversation and we went and sat on the sofa and he made me laugh and we relaxed into a happy conversation about our day.  After about 10 minutes he said he had something for me and got a photo of a flamingo out of his pocket (this is not a euphemism .  And then he kissed me and it was perfect...suffice to say I should have shaved the top half of my legs!
 We chatted and snuggled on the sofa together until nearly 1am and then he left.  At this point I had a slight nervous breakdown that perhaps it was a one-off and we wouldn't meet again...but he texted me when he got home and asked to take me on a proper date two nights later.


  I knew when I saw his photo, I knew when I opened the door and I knew it was forever as soon as he kissed me.

  Three years and one wedding, one baby, one house move later I still know.  He is my soul mate and my best friend and I know he will be forever.

Holidays in term time!

This year we are taking our family (along with my parents) for a weeks holiday during term time.  I know a lot of people disagree with taking children out of school - and to a great extent I agree.  However, because of middlest Autism, ADHD & Anxiety he cannot cope with busy, noisy places.  So for the last two years we have taken him and the eldest out of school to go at a quieter time.  This was after a few awful holidays where he could not cope at all.

Our life is spent planning visits anywhere when it is quiet and less noisy.  A trip to park is early in the morning before its busy, or on a cold damp day when most people stay away. Most of our trips to the beach are in the autumn and winter, when all wise people are at home in the warm.  A 'bank holiday' special event is avoided like the plague!  We will be avoiding Easter Egg hunts this weekend. Even visits to friends or family (which are kept to a minimum) have to involve a plan for middlest - with somewhere quiet to go to, with his things to play with, his food packed, his easy to put on shoes at the ready for when its time to leave.  Life is a constant focus of finding and doing quiet things.

 This is why we've taken our holidays in term time - so we can find a quiet place to stay, visit the museums and attractions at a quieter time.  We always leave it almost to the end of the  year - when I know schools begin to wind down and tie it in with a Training Day at the school so they only miss 4 days.  We take my parent with us to help manage the middlest.  His obsessions mean he doesn't like doing things the eldest does - so we can split up and do different things or, if he begins to meltdown when we are out one of us can take him away and find somewhere calm for him.  Holidays are not relaxing or much fun as middlest struggles to adjust and cope with new surroundings and by the time he does, its time to go home again!

  Today I had a phonecall from the kids school.  They told me that because both of the kids have slightly below the 95% attendance they would normally not allow them to take holidays in term time and because of this, they are willing to allow the midlest's problems to be used as extenuating circumstances and permit them the time off this time.  However, next year they will not allow it.

I understand the 95% attendance limit, and I know both of mine have missed a few days this year due to some really nasty viruses for the eldest and problems with the middlest drugs which have made him ill.  What has annoyed me is that apart from on 2 occasions I have sent them both to school, only to be called and asked to collect them - because they felt 'unwell' - when they got home, they've been well enough to stay at school in my opinion. I also know, that like most kids, they get poorly during the winter months and by the spring they rarely have a day off and their attendance shoots right back up.  Its funny that the school send the middlest home every friday afternoon, as they cant cope with him and they dont have the provision to cater for his needs and yet that's not an issue for attendance.

So next year we have been told they wont permit his time off - so next year we either face a fine if we take them out of school without permission or we dont have a holiday at all.  A lack of understanding about Autism and the impact on the family?  Just a bit!  If it was just a fun holiday that we preferred to take out of term time to save a bit of money fair enough, but there are serious reasons for us needing to do this.  Suffice to say we will be fighting this every step of the way

Another wasted teacher!

I saw my sister today, she is a teacher in a Secondary School, teaching Science to 11-16 year olds.  She is good at her job, really good!  Im not just saying that, the progress her students make is the best in the school in science - and she only works 3 days a week.  She's been asked many time to be Head of her Department, but having three children of her own has always stopped her from committing to that and going full time - she would be amazing though and has acted as Head of Science many times.

 However, after twenty years of teaching next week she has a job interview, which is not a teaching job.  She has finally had enough.  Over the last few years she has been repeatedly bullied by management for daring to speak out against some of the decisions she disagreed with - she set up a staff forum so others could have the chance to express their concerns without fear of reprisals from the senior managers.  She was offered the role of Head of Science but asked if it could possibly be done on 4 days a week, (until her youngest is at Secondary school), so she could still have time for her children, she was told absolutely not  - and instead no-one was appointed.  She works every single evening until at least midnight, marking and planning.  Her two days off are spent compiling lessons plans and more marking.  Her weekends are the same.  Recently she added up how many hours she works and compared it with her friend, who is a GP and works full time.  She did far more hours than him, for far less pay.
 
  A new Headteacher has recently been appointed at her school.  She is a Governor and helped interview him  and was really pleased he got the job, he seemed like the fresh start they all needed.  As expected he wanted to observe with his management team and they did.  The science department didn't do too well - with the exception of my sister who had excellent observations.  So the management team came back and observed them all again and again.  This is fair enough - they want to school to be at its best.  For the last observation my sister had planned a lesson which was outstanding, she was so pleased with it and how the children made progress.  However, the senior manager who should have been observing forgot.  When my sister approached her and asked what had happened, the senior manager immediately became aggressive and rude and told my sister that 'all lessons should be outstanding, you shouldn't be putting on special lessons just for an observation.  If you dont like it then you should get out of teaching altogether.'  This to my sister - who works 7 days a week, who works every night until the early hours, who is one of the few who actually cares about the children she teaches and is determined to give them the best education possible, who has the best achievement record for her pupils in science in the school.  This is also my sister who can no longer sleep, who is making herself ill by working so hard, who is constantly worried and stressed and miserable because of the pressure on her.  She didn't put on a 'special' lesson, just one she was proud of, and one in which she had been told would be observed, but that didn't matter to the management.

The trouble is the good teachers are leaving the profession in drones - my sister knows of ten more at her school who are actively looking to get out.  The good teachers care about the kids and take pride in their work, they dont want to let anyone down and so work themselves so hard, until they break and can't do it anymore.  The mediocre teachers who will never be inspiring or outstanding chug along, not caring enough to make a real difference or get stressed by the workload.

So next week she has an interview - for a full time job, which isnt teaching.  I hope she gets it, she needs to escape the stress and pressure.  Teaching has the highest mortality rate out of all of the professions?  For those that survive to retirement age they are the most likely to die within a year of retiring (according to a Unison meeting my sister attended last week) - something to look forward to then!
  I was good at teaching - an 'outstanding' teacher according to Ofsted - like my sister, but I wont return to it.  The Government puts the pressure on Ofsted, which put pressure on the Headteachers which put pressure on the Managers, which put pressure on the teachers...its a ridiculous system, with no-one at the top really understanding the reality of life in a school.

Today my children's school have Ofsted.  My eldest was lectured by her teachers to be exceptionally well behaved or be in trouble with the Headteacher and that if an Ofsted Inspector asks her about the work she has to say 'it's challenging and really interesting', when in fact she says it's often too easy and boring.  The whole Ofsted inspection is flawed - even with only 24 hours notice it doesn't give a real picture of a school.  In my previous job our Headteacher bamboozled Ofsted with paperwork and talked at them, with an excuse for everything, until our school - which should only ever  have been satisfactory got given a 'good' rating.  It was fake, but everyone was happy, but there was a real sense of unease amongst the teachers.  I have told my daughter to tell the truth, so Ofsted can judge for themselves and so future pupils can have the opportunity for it to be a better school.

Someone, somewhere needs to realise that this system cannot carry on.  The people at the top are crushing the people at the bottom, they deserve better and our children deserve better.  We need to look at other countries and see how they do it.  Finland has the highest academic achievement in the world and yet there are not inspections, no Ofsted, no private schools, teachers are well-paid and respected...its a million miles away from our failing system.

 So, I hope my sister escapes and gets her life back.  But the children in her school will miss her, the parents will miss her and eventually the bullying management who have driven her out will miss her, but by then it will be far too late.

D-Day!

Today was D Day!
This morning we met with the middlest's school.  After all of the grief and veiled threats the Headteacher and SENCo weren't even there.  To say we were annoyed is an understatement.  We passed on our concerns about what the Headteacher had said - lied about - and the other teacher and teaching assistants were visibly shocked and had obviously never said anything about not wanting to complete our forms.

 The meeting was quite hard to sit through as they focused on the bad things middlest does.  They have real concerns about him too and his behaviour has changed a great deal recently - with increasing refusal and some defiance about completing the work he is given.  They agreed about not believing he has ADHD and were able to agree with many features of Paediatric Bipolar.  We left feeling very glad we had met and even more grateful for everything they do for him.

  Middlest was then sent home 'ill' at lunchtime - another feature of the ongoing worries we have about him not being 'right' currently.  After a lay down and some medicine he was much improved and ready for the meeting at CAMHS.

  His Dr is amazing!  I always write a report of how things have gone and highlight questions or concerns we have - it helps me keep a clear mind as otherwise I would forget what I wanted to say.  His Dr read through this and addressed every issue carefully.

Paediatric Bipolar was not ruled in or out.  He is displaying some of the symptoms, but at his age it is hard to be certain.  If he did have it, the anti-psychotics he already takes would be prescribed, so not much would change.  We will continue to monitor him as he becomes an adolescent.

We are to take him off of his ADHD drugs immediately in case they are causing some of his physical and mental problems.  If this doesn't help we will increase and maybe change his anti-psychotic drug as he will remain on this long term now.

 If this still makes no difference he will be referred to a Paediatrician for further physical tests.  He is also going to have therapy to try and help him over come his fear of insects and bees as it has such an impact on his life.

His Doctor was most concerned about his depression and increased anxiety - which don't seem to have a reason for increasing.   Possibly it is because he now spends more time at school and is finding it hard to cope with - it's hard to say.  Apparently a lot of ASD kids stop making progress as school becomes harder and concepts more abstract.  I can't bear the thought of this, so Im hoping middlest will be different - he has such potential.

 It was a great meeting and I'm glad we have a plan - I always need a plan!  However, once we were home and dinner was cooked and the kids were settled, I cried and cried and cried.  It was just another day to highlight how hard things are for middlest and suddenly I was overwhelmed by how hard his life is.  It was more grieving for the life he could have had if he didn't have these problems.  He's a clever, funny boy and he could be top of his class and popular and happy.  Everything felt so unfair and my heart broke a little bit more for him.

Of course tomorrow we will get on with things, try different drugs and strategies, but tonight I need to be sad.  Although I love him so fiercely, I miss the child he could have been and I worry about his future so much.  Today just reinforced that it wont ever be easy for him, and we are still at the very beginning of a lifetime of battles.

Mental Health Genetic Links

A really interesting article in the NY Times from the Lancet Medical Journal about the new findings on autism and other mental health issues genetic links


http://vitals.nbcnews.com/_news/2013/02/27/17121643-mental-illnesses-share-common-dna-roots-study-finds?lite

Hell Hath No Fury Like A Mother Scorned

So far I havent talked much about my son  - the middlest!  He is 8 and has Aspergers, ADHD, anxiety, hyper-mobility and a few other things which are under investigation.  The last 18 months have been extremely hard and he now has a Statement of Need and gets 15 hours a week 1:1 in a mainstream school.
  On monday we finally have a long-awaited CAMHS appointment and are seeing his Psychiatrist and mental health nurse together.  This meeting has come about due to Charlie's 'behaviour' worsening - for want of a better word.
 He doesnt, I think, display enough of the symptoms of ADHD, although he is on drugs for this.  So i want to present the evidence and see what they say!  However he does (when not on an anti-psychotic drug), display a worrying number of symptoms for Paediatric Bipolar Disorder (PBD) - all but one!

  Now the problem is, PBD is not really recognised over here in the UK and his Drs dont really want to discuss it.  So far they have attributed everything to Aspergers.  They might be right, I hope they are, but Im not willing to ignore the fact that it is a possibility.  He biological father has it, so the chances are higher.  After  a particularly bad time (when we trialled stopping his anti-psychotics last autumn) they finally listened to me and agreed to discuss it at the meeting on monday - we've waited 6 months for it!

  Over the last 6 weeks the middlest has not been himself.  He has a list of physical symptoms, including extreme tiredness, pale skin, dark eyes, loss of appetite, irregular bowel movements, zoning out, confusion, difficulty co-ordinating his arms and legs at times...the list goes on.  And we are worried!  The school have noticed, his swimming instructor has and we have been to his GP, who was also concerned.  All blood tests and GP tests have so far come back clear and we are not waiting for 4 weeks to see if he improves.  Im also hoping CAMHS might be able to shed some light on what is happening - whether it could be a mental thing or a reaction to his drugs.

 However, in order to be fully prepared I sent a short questionnaire into his school, asking if his Teaching Assistants could spend a few minutes ticking symptoms he was showing in school and commenting where they felt they had something to add.  No big deal I thought...I was wrong!

The Headteacher at his school is my old boss - Ive known her for 14 years and in that time we had a few disagreements, but overall got on ok.  However she is extremely manipulative in everything she does.  Not a word comes from her mouth without an agenda.  There were occasions she made my life hell, but when she got the job at my children's school I thought it could be a good thing.  And I was certainly not going to bring up old disagreements.  Over the last 2 years it has been fine, even had some advantages...until this week.

 Two weeks ago she contacted me and said that she thought a meeting to complete the questionnaire would be easier, that way everyone involved could be there and I could ask whatever I felt was needed.  This seemed fine and I happily agreed, although i was surprised as his teacher and TAs had all contacted me and said they were very happy to fill in the questionnaire.

Then this week, as my husband and I were about to go and see the teachers for parents evening, she said that that some of the teachers had been to see her and were 'unhappy with filling in the form as they felt I might use it to try and get a diagnosis' for my son.  But that she had 'reassured them that I was a former experienced SENCo and I would never do that.'  Whilst I nodded and assured her that was never my thought and walked away I was left with a strange feeling.  It reminded me of times past at work, where she would say something, without ever actually saying it.  But initially I couldnt quite work out why I felt that way.

 It wasnt until I got home, I realised she had just warned me off.  She had very subtly told me not to try and get the school to diagnose my son.  And that they definitely would not give me any written evidence.  The more I thought about it, the crosser I became, as I realised what she had done.

  Yesterday morning the middlest decided he did not want to go to school.  He hid, he begged, he clung to the door frame and in the end I had to drag him the entire way.  Yesterday was different - it was wear red for Comic Relief day - he doesn't cope well with change.  As is typical he was initially really excited and happy, but a last minute panic happened - as it often does.  Once I'd finally handed him over to his sympathetic TA, I saw his Headteacher standing at the gates.  As I walked past I said he had been really hard work and she snappily replied 'just put his different clothes in a bag and then he can change at school if he wants to and if he doesn't its our problem to deal with, not yours.'  Now this could easily been seen as a sensible suggestion, but there was a dismissive tone to it, one which said, you're making a fuss about nothing, he just needs handling correctly.  I'd heard this tone many times when she felt I hadnt done something well enough at work.  It was unmistakable.  I wish it was so simple that I could just do that!  It certainly highlighted her ignorance in how to handle my son.  Yet, I smiled and agreed with her, even said it was a good idea.  I went straight back into work mode, where you dont disagree with the boss, unless you want your life turned into hell.

 For the rest of the morning I felt unhappy about what had been said, and I was determined to find out more!  So when I went to collect middlest at lunchtime for his afternoon at home school I spoke to his TA.  I said what the Headteacher had said about filling in the questionnaire and expressed my concern.  She told me that none of them had said anything like that.  That it was the Headteacher who had told them none of them were allowed to fill it in and that she was going to be at the meeting.  She said she didn't understand what was the matter with her or why she was behaving like this.

So, there it was, my proof, that I am in fact not going mad, the Head did lie and blame it on the people I have come to know and trust.   But there is nothing I can do without landing the lovely TA in trouble - and I'm not willing to do that.  However, the meeting with the school is on monday and at this my husband and I are planning on questioning (in front of the Head) why everyone was so worried they went to her, especially after telling me they were happy to  complete it.  And that there now feels like there is an element of distrust between us and the school.  That they seem to be implying that we are trying to push for a diagnosis for our son, when in fact all we ever wanted to do was just get a list of symptoms he displays at school which we can take to CAMHS and ask what it might mean.

 This woman (the Head) has bullied me and many other over the years.  Her devious ways have reduced many people to tears or even leaving teaching altogether.  I put up with it then because I had no choice.  Luckily I no longer work for her and finally I do not have to accept what she does.  I never spoke out before against her, but this time, for my son I fully intend to confront her at this meeting and find out what she is trying to do.  As they say, hell have no fury like a woman scorned, especially a mother!