Procrastination

I am an expert. I have an essay due in on 6th November which is the Tuesday after half term so needs to be completed today - I help in DS2's class tomorrow so today is my last day. I am sitting here unable to proceed though. arrgghh. The solicitor sent me an e-mail this morning and I am focusing on that and making it an excuse not to get on with essay writing. The Defendant's solicitor has asked for more information on causation and the QC has just written it out so the solicitor has to check with me if it's ok to send it. That means, however, that I have to read it all again and to be honest I am trying to forget. On top of that DS's one-to-one teacher had a word with me this morning about his latest thing which unfortunately is taking off his pants when he undresses at school for PE or gym trail - which he had this morning. Apparently, in year 4, this kind of thing is unacceptable. Usually I would not still be focused on this 5 hours after the conversation but to re-read and re-remember the brain damage makes me think...this is how it will always be. Maybe I should get on with the essay and stop making up excuses.

Oh as an update the Trust's solicitors have until 31st January 2013 to respond now not the 13th the solicitor transposed the date. Made me feel better to know they weren't being facetious to request an extension and have a new deadline of a Sunday. 

I posted my EMA on Monday so ED841 is over - well assuming I achieve at least 40%, fingers crossed.

DS had another seizure last night, well about 2am this morning. It was over quickly compared to the others.

DS's solicitor contacted me via e-mail today, she tried to phone but we have been out all day. The Trust have requested an extension on the deadline. It was expected and I am pleased that they acknowledged the deadline of 20th August and asked for an extension before that. The Trust also requested more information on causation. The solicitor is considering, with counsel, whether they need it or not. 

The latest deadline is 13 January 2013.

Less than two weeks now until the deadline. I am wondering what is going to happen. Will they respond, or ask for more time? I shall have to wait and see.

More than 7,000 words done now and near the finish for the EMA.

I took the boys to the Olympics on Friday 3rd August. They loved it. So did I. We went with my Mum and a friend's 8 year old girl. We saw the men's trampolining. It was so visual. Dong Dong from China won gold, he was amazing. Well to be honest they all were.

Less than month now until a response from the Trust is expected...

I have 4,953 words so only 2,047 left which is potentially manageable for the summer hols if I spend a few evenings on it. With the +/- 10%  only 1,347 words remaining is my lower limit, more than manageable. The course (ED841) https://msds.open.ac.uk/students/study/postgraduate/course/ed841.htm  has been great, quite a large majority of those doing it are not liking it but it has suited what I hoped to achieve. TMA 1 for example was something I was very keen to research:

Goldin-Meadow (2007, p. 417) argues that the home signs of hearing-impaired children provide evidence for the existence of a cognitive bias, whereby children ‘structure communication in language-like ways’. She argues that this bias is not derived from engagement with linguistic input, as these children cannot hear spoken language. What is your view on the extent to which other research in the area of language development supports Goldin-Meadow’s (2007) argument? Critically evaluate Goldin-Meadow’s paper ‘The challenge: some properties of language can be learned without linguistic input’, and draw on other material in Block 1 in support of your answer. In doing this, you should present your view on the extent to which other research in the area of language development supports Goldin-Meadow’s argument that linguistic input plays little or no part in language development

TMA5 has been interesting too:

Critically discuss why interventions and treatments for children with specific language impairment (SLI) vary in their effectiveness. You should use the materials from Block 3 of your module studies to support your answer.

Both have revealed some interesting pieces of research to make me think about DS1 and his language - or struggle with language. He is clearer in his speech now and he works with his SALT on questions so he is getting good at posing them. His speech reminds me of BSL, for example this morning he was talking about my sister, her husband and her son visiting us. He said 'who pick them up at the station? my dad pick them up.' From my BSL level 1 I remember that that would be the word order for signing a story like that.

The course has illuminated interesting facts about SLI and language almost as an aside to my real reason for wanting to complete this course. TMA2 sums up what I really wanted to learn all along and have been struggling with and wondering if I am doing the right thing by sending DS1 to a mainstream school - oh I must write my thoughts on this to see if I can find some answers.

Describe and critically evaluate theoretical ideas as to how adults (or more able peers) can support children’s learning, and review some of the empirical research related to these ideas. You must draw on material from Block 2 for your answer.

That is exactly what I wanted to find out. I got 93% for it! 93% is pretty well close to perfect if you ask me. So I should know now right. I should use that knowledge to decide on the appropriate route for DS1's education. But nothing is that simple. I have found out that the more you know the less you actually understand because there is so much more to know. That puts a different spin on that 93% - does that mean I know very little - about 7% if I were to put a figure on it! - about what I hoped to learn. Well I do know that DS1 and my thoughts about his education have been reconsidered a fair bit since starting this course. Mainstream is not ideal but he is happy, he loves his LSA (learning support assistant) and has a Statement for 25 hours with her. I think those 25 hours are my main concern at the moment. He doesn't get 25 hours - she has Friday afternoons in a different classroom, this has always upset me perhaps I need to sort this out for the next school year. Anyway what little I did gather and what I tried to write in TMA2 so I can't be too far off the mark (did I mention I got 93%?) is that children learn. That's it really. DS2 does this. He does it himself. I can't stop him. Nevermind theoretical ideas, he just learns. He seeks and finds in his rich environment everything that he needs. DS1 needs more help with everything but does that mean it is wrong? That I haven't done enough for him? I am starting to think not. I am starting to trust him to learn what he needs to learn. This morning he saw N coming though the house with his scythe and he jumped up to unlock the back door, he knew that was where N was heading - to cut the grass. That is all that matters isn't it?   
 

It's the last day of school tomorrow. I am looking forward to letting the boys sleep in in the morning - well not DS1, he is mostly a sleep refuser but DS2 can not get enough. Hopefully the morning fights will dissipate there have been a few this week because they are both tired I guess. DS1 is engaging in lots of retaliation before the event.

I have a 7,000 word research proposal to complete before they finish school. It is due in via post on 6th September, they are back at school on 4th September so it needs to be done NOW hence this post about nothing. I am procrastinating, I have cleaned the toilet, finished all the chocolate in the house - but kindly left enough chocolate spread for DS2's special treat Friday sandwich - and now I must get back to the proposal. It is mind-numbing I only need 40% to pass and that is the level I am pitching it at. 3,836 words so far only 3,164 left. arrrggghhhh.
   

5 weeks today until the deadline. The Trust must respond to the letter of claim pursuant to section 3.25 of the Pre-Action Protocol  

http://www.justice.gov.uk/courts/procedure-rules/civil/protocol/prot_rcd

The response should provide a reasoned answer to the letter of claim but the solicitor has made it clear from the outset that the Trust are likely to ask for more time to respond and that any additional time will be granted. I thought I would make it to 20th August without thinking about the deadline because it is not a real deadline the Trust don't technically have to respond accepting liability but I hope they will.   

DS had another seizure on the night of Monday 9th July. This one was slightly different in that he appeared to stop and come round then started again. It was at about 9pm and he had been unable to sleep so he was probably tired. He was sick - lots of pasta which made N think it was his teeth falling out. DS2 hardly woke up. The lovely DS and I slept in my bed after the seizure and he hardly stopped moving all night so I have been in need of sleep catch up all week. 

Only 5 weeks and 1 day until 20th August and the four month deadline for the hospital to respond to the letter of claim. I am beginning the count down.

So much has been happening, where to start? Well DS had another seizure, I kinda thought they would stop with the medication I mean I know there is no guarantee and I know it can take time to find the right dose and that no one knows how they work and some meds work for some people while others never find any that work, but you know I just thought there would be no more. DS was fine, he recovered and has not questioned why it happened or indeed why he should still take his medicine to stop his seizures when they have not stopped.

The last seizure was the morning after my graduation! I finished my MA. It was great I loved wearing the different coloured robe from all the BAs how sad is that? I only wanted to do the graduation thing for the kids to see, something for them to remember and for them to see that I finished my degree so they could too if that is what they want to do. But I loved it, it was so much better than my last one. I had tooth ache last time and had a horrid day, this time I enjoyed it. 

So the graduation has made me think. I tend to focus on the crushing and awful, I have been taking time to think about the positives. The MA sums it up, it represents taking the bad thing that happened to DS - those midwives not acting and leaving him starved of oxygen for 90 minutes (idiots!) - and creating a positive.

DS was crying when I met him - not when he was born and dead, not that time I met him I don't really count that, I mean later. When he was 48 hours old we were told he had an 80% chance of a physical and/or intellectual disability, his machines sounded alarms consistently and I assumed the nurses were leaving him because he was damaged. (I later found out it was because he was full term and coping well and the machines were set up for poorly babies born early.) So the crying has always worried me. I read about leaving babies to cry causing damage to their brains because of the increase in cortisol due to stress, so I tried not to let DS cry. I never left him. I thought I should do that for him. After all I damaged him before he was born I couldn't knowingly damage him again by leaving him to cry. I was in possession of the facts this time - no crying...So I have always sat with him at bed time. Always. Firstly I used to go to sleep, then I read trashy novels. My brain was getting mushier and mushier so I signed myself up for an Open University course and have never stopped - except for one 6 month break but...well that in itself is another story not for sharing here...so now I have an MA and because I am addicted to it - the sitting with him while he transitions to sleep, and the studying - I will have an MSc soon too!

So that is a wonderful thing to have done. Also while I am congratulating myself and focusing on the good things I should tell you that I birthed my DS2 at home. I knew the hospital had messed up, I wanted another baby and I didn't trust handing over my care to anyone else. I had moved by the time DS2 was born I had to leave Leeds, too many horrid memories. Here - where we moved to - the midwives were fully supportive of a home birth. It was wonderful. I remember not being able to sleep that night and leaving DS2 and N in bed to go downstairs and sit where I had birthed him - healthily, how it was meant to be. It was healing. I hate what happened to DS1 but some great things have grown from it. Thank you to my beautiful boys. 

enough

I have been trying to help a friend and I can do it no longer. I wonder why. I finally got round to telling her that I can no longer help her just yesterday and I feel so much better today, like a weight has lifted. Both boys biked to school this morning with me running (a long way...) behind. I walked back home, hoovered, made a cake and am currently pretending to complete an essay - I am good at pretending to do that. I feel like I have some time to myself again. So why could I no longer help her? Well it started out as helping to sort through stuff - you know that stuff that just piles up over the years - it was to be one hour a week with the idea of alternating weeks, so one week at her house and one week at mine. Sounds great right? Well this was in September and she has come to my house once! but I was pretending to be ok with that. The thing that pushed me over the edge - ok things - were she stared saying 'come at 1:45' - it used to be 2 - little thing I know but this is my time. Then I was going after dropping the boys at school and she would set the timer for an hour when I had already been there 30 minutes this was beginning to irritate me a little but I probably would have let that go in itself. The last thing and the one that made me think 'hang on a minute' was she was booking me in - we arranged for about 3 or 4 weeks in advance - and she started harassing me because I had an appointment at the hospital for DS, she said 'what about Wednesday, you don't work all day' well f*** me that was too much. I work in a charity shop one morning a week I finish at 1pm, get home have lunch then pick the boys up I am not sorting her stuff on Wednesday. So I have said enough. She was beginning to overwhelm me but I know it was all in my head - why couldn't I just lay down some appropriate boundaries and stick to the hour a week, no more and sometimes at my house please - I have piles of stuff too. Well maybe that is the next stage of my recovery for now I am pleased with myself for saying 'enough' I wish I had stood up for myself in that hospital and not let those midwives injure my baby, my god how I wish that. I hate myself for that more than I could ever allow myself to acknowledge I should have done something then but as I can't go back and make that better I am going to enjoy my small victory and that cake I can smell now.  

I found this http://www.amazon.co.uk/Fetal-Monitoring-Practice-Donald-Gibb/dp/0443100047/ref=sr_1_4?ie=UTF8&qid=1337260574&sr=8-4 wonder if I should send it to the Trust...

I have managed to get DS a repeat prescription without any GP hassle so all's well. We were at the eye clinic on Monday, he has great vision apparently so it is much more visual-perceptual whatever it is that is going on. Wonder what is going on?

Singing lessons have been cancelled the last few weeks. Singing teacher has had a sickness bug then a throat infection. DS, however, has not stopped I can't wait to go again because I would love more than Mamma Mia...funny how he has gone from not talking at all to me wanting him to stop singing ABBA, well I don't really want him to stop, it is great to hear him enjoying himself but a different song please;) Last lesson he wanted to learn Happy Birthday, the teacher asked him who he wanted to sing it to and he said 'the car' so they sang 'happy birthday to the mini car' 'twas wonderful.    

It arrived

Yesterday the Trust confirmed receipt of the letter.

So why am I doing this? I am going to try to explain why I have reached the point of taking legal action against the Trust I will not name but feel sure were recently featured on series 3 of a Channel 4 television show, obviously I am not sure of this claim because I haven't got a television.

I feel so angry. I can't make sense of it sometimes. I have my baby what do I have to be angry about?

Where to start? I am angry about how we were treated. I am angry about the resulting brain damage. I am angry that in all the letters the hospital wrote to me they did not once answer a question without covering their backs.

For example, I asked the hospital

'How often does the manufacturer [of the machine we were attached to] recommend the machine should be serviced and when was this last done?'

The hospital replied

'The manufacturer recommends yearly servicing and the next service is due in 2005.'

When I received my hospital notes I read correspondence between hospital employees that acknowledged the machine had been overdue a service when it was being used as my son was born. The facts are not as upsetting as the underhand answer to the perfectly reasonable question.

So I am angry not just at the way we were treated, the resulting brain damage, the life-long struggle DS will now have because of the resulting brain damage but also the bloody-mindedness of the hospital that caused that damage.

It is comforting to note that amongst the rude letters I have received from the Chief Executive is the claim that 'the quality of the CTG was good and able to be interpreted' I can't wait to hear him explain how the midwives missed the persistent complex variable decelerations and the 6 in 10 minute contractions and decided to increase the Syntocinon.

It has gone...

The letter of claim has been sent. It was posted on Friday 20th April. This is pursuant to paragraph 3.15 of the Pre-Action Protocol for the Resolution of Clinical Disputes (http://www.justice.gov.uk/courts/procedure-rules/civil/protocol/prot_rcd) and now the Trust - I will not name it but I do believe the very hospital was featured in series 3 of a progrramme recently broadcast on Channel 4 - but not having a televsion I am not entirely sure I am correct in that respect...- has 14 days to acknowledge receipt of said letter and 4 months to respond to it. I know it is very likely that the Trust will ask for more time to conduct their investigations but it feels so close to the end.

Oh and I found this http://www.nmc-uk.org/General-public/Reporting-a-nurse-or-midwife-to-the-NMC/ I am going to make this the next step on my road to recovery.

The lovely DS had another seizure during the Easter holidays - early hours of Monday 9th April. N and I have now, after much research and debate, decided to medicate. We believe for now it is the right choice DS was keen ('yes, stop my seizures') and that was a big help in coming to the decision.

So decision made, paediatrican had suggested it in December after EEG confirmed epilepsy, he had written to the GP and told us if or when we wanted to medicate just to get in touch with the GP. But of course nothing is ever that easy. The GPs were only concerned about their budget and wanted to prescribe tablets - for a small boy with LDs and oral dyspraxia - even though the paed had said he would prescribe liquid arghhh. I was in tears shouting and swearing (opps!) before I got a prescription for syrup. If I'm honest I over-reacted I would love to be able to state my demands clearly, I was making a perfectly reasonable request: NICE guidelines on the epilepsies (CG137) state that medication should take account of co-morbidity and the person's or family's preferences; yet I was unable to make my request and respond to her (the GPs) attempts to change my mind. And I wonder why my children have melt downs!  

DS's solicitor has been here for the last two days. She has been taking a statement from me about the birth and the following 8 years. N gave a statement too about what he remembers from the time. The solicitor told me about the TV show, two of the midwives at DS's birth are on it. Arghh. I want to write to Channel 4 to tell them and I really want to write to the midwives too. Maybe I will just have to. I feel a need to get it out there, tell them how we have been affected by their inability to perform their duties adequately.

To the midwives

Last night I googled the names of the three midwives in attendance during DS's birth. I have done this a few times before. I don't know why. Anyhoo, I discovered that one has written a report about monitoring CTGs (!, not sure how she is qualified to do that considering her history) and another is on a tv show about midwives (I am so glad we got rid of the tv although I wish I knew before.) I discovered an e-mail address for one of them and I have written to her I am not ready to send it yet, it is not finished, I will add to it, but I will pop it here in case she wonders by.

At [time] on [date] I gave birth to my darling son. He was blue and unable to breathe. I know why. I understand the mechanics. I was overdosed on Syntocinon infusion and tachysystole became hyperstimulation. In normal circumstances this is not a problem, it is noticed because if a woman is given Syntocinon infusion the baby must have continuous electronic fetal monitoring. In our case the continuous electronic fetal monitoring was neither appropriate nor adequate. My darling son was begging for help. The continuous electronic fetal monitoring was pathological for nearly two hours.

Three midwives reviewed the CTG during this time, you were one of them.

We live with the consequences of ignoring a pathological CTG trace for nearly two hours daily. I want you to know a little bit about how we have been affected. I blame myself. I have had counselling but the panic attacks continue. I dream that I am strapped to a bed trying to get away from an unidentified being trying to hurt me. I can only use my arms and I can never get away. I have so much anger and am not always able to channel it appropriately. My darling son did not walk until he was two and a half years old. He did not talk until he was five. He needs a dedicated learning support assistant for 25 hours of his 25 hours spent at school in order to access the curriculum. I don't know of he will ever be able to write his name.

what the draft letter of claim means to me...

I can feel a ray of kindness creeping into my soul. Last night I felt a lightening, a movement towards opening up to a possibility of not always feeling this anger that has remained with my through my journey towards justice for my son.

I have just received a copy of the draft letter of claim to be sent to the Trust. I feel, well there is always the anger: at myself for not handling labour differently; at the hospital for their inexperience resulting in S's brain damage and the complete denial of any wrong doing; but that aside relief. I feel relief. 8 years and now I have something that tells the Trust what they did wrong - although my letters of complaint do that too but they refused to listen to me so I had to ask a barrister to do it. I feel - and huge thanks to my mum and my brother for their support, without which I would not be feeling this today - that I have achieved something positive. That out of despair there is some hope that things are going to be ok in the end. That is all I could ever ask for.

We had the results of S's sleep deprived EEG. Dr. J called it a sleep deprived EEG yet the letter from the hospital EEG department (?) called it a sleep EEG. Given my dealings with the NHS I am not at all suprised to hear it called any number of things by a vast array of 'experts'. I digress. The results were no suprise - epilepsy. Dr J said it was a pattern that suggests absence seizures - school have mentioned these seizures as a possibility - after the classic tonic clonic ones started of course. The neurophysiologist reporting the EEG claims the patterns are suggestive of cerebral palsy - a classic case of skim read the notes then write everything you learnt about oxygen deprivation at birth at university 30 years ago. Dr J laughed when I suggested that perhaps someone with more knowledge should report on the EEG the neurophysiologist is the only one in East Anglia - more confirmation of my theory that the NHS sends (some...) employees out to pasture over here.