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BK Update: health, families, school

It's been a long time since I posted. I've been really struggling with my ME - a knock on effect of nursing BK through what turned out to be labrynitis. Now, when my Mum and my friend had this they were givne meds to stop the dizziness and sickness and signed off work, but BK? The GP, apart from again acting if it was in my head told the school she was fine to be in school after they had sorted out the fact she could stay in Learning Support and go home if she fell over to much. thanks stupid GP, who wrongly diagnosed side effects of metformin and took away the support with a fell swoop. We have had enough. At the beginning of July I registered both with a new GP who is - weirdly, scarily, psychically? - identical to Hathaway's GP in Cold Summer and White!

Well, the first few weeks of the school hols were BK lying around, recovering. then we chilled out for a bit, swimming in Hinksey when nice and hanging around Starbucks when not watching students. Now, Oxford in August is normally crowded, but for the two weeks of the Olympics - I've never seen the like!!! BK went to the Olympics with my brother. She saw Hockey and spent the whole day there in the complex, going up the Orbital and listening to live music. It has had the most benefical effect of finally helping her overcome her phobia of trains :) also, she stayed for the longest time ever at my Mum's and I got to stay with ilovewales and see Laurence Fox at the Bedford :) They stay ended with the biggest row ever in my family history, too, but that is another story. I was the calm, rational one, my step dad drunk and my Mum hysterical and lying but recruited my brother and of course, I'm labelled the unstable one... This really was confusing and distressing for BK amd we still haven't recovered yet, as a family - the little support I got has sort of disintergrated, but oh well...

Families, eh? BK's paternal grandmother passed away the 3rd September, with a message from her father as we were packing up and cleaning the caravan before going home by trains from our holiday. Funeral - not invited. Fair enough, wasn't expecting it. Bk got texts like 'I feel broken' which I shouldn't have been surprised about. Because, of course, you tell your 12 years old daughter who you've barely seen since she was 3 and you abused her how you feel about your mother dying, don't you? Well, you do if you're BK's father! Everything topped by last Saturday, when we had a lovely day out in Reading with ilovewales we get home and find her missing phone to find 3 voicemails and 4 texts from her Uncle demanding I call urgently. BK conviced her father has committed suicide, been committed or arrested for inappropriate, drug related behaviour. Just brother-in-law demanding to see us and what the 'dick' (ie his brother, my 'husband') had been doing. But we were waiting for the out of hours GP as BK got sick in Reading. Everyone worried she was hyperglycemic thinking the insulin resistence had tipped to Type 2 diabetes but it turned out she was hypoglycemic - blood sugar low but sugar in urine. Metformin working too hard? We are seeing the new GP this afternoon.

School All summer I've been thinking fresh start, the SENCO expert in autism now in control but...

Maths Despite being told by the Y7 maths teacher she wanted her in the top maths group, and had talked to the teacher about how to support her autism in class and her vaious weaknesses due to her auditory processes dysfunction; despite having had her doing GSCE papers since the first week of Y7; despite her tutor feeling that she should be in the top-middle rather than top to alleviate possible anxiety at benig at the top BK is in the remedial maths class!!! This leads to
Key Worker/TAs None. Despite being told despite the new headteacher's restructuring of the TA support for this year would not effect BK she has no named Key Worker for her, despite being guaranteed this last year until Y11 and there are no TAs to support her in any class apart from Art(?) and registration. The solution is obviously to put her in the clases with the EFL, behavioural problems and simply low IQ girls. She is High Functioning Autistic with asperations to universtiy and career. We are lucky, as i hope she can hang on to them.

There are various other problems too, in just four days back at school, but I can't go on. I've decided to leave it until I can get appropriate help from Parent Partnership and keep a log of all the lack of support that is actually outrlined in the Satement of need and only have minuted meeting with outside expert support, else they deny all conversations and invent sudden support - going on the two previous primary schools and the first half of last year. I really don't want to, it's a struggle, but if can't get her into an autism base I shall have to consider home schooling her again as I want her to excel academically like she is capable of and not dismissed as 'thick' and left to rot on benefits with no asperations.

She went back to school on her birthday too, which was a kick in the teeth. We have had no behaviours since erly July and her ill health and lack of school/GP support. So far, she's been doing well, but I am using all my energy (spoons, see previous post) for her. So, despite being desperate to write and have a little escape and me time, I'm not. so guys, if anyone is waiting for the rest of The Lower Depths and the last chapter of White - sorry again :(

Comments

( 6 comments — Leave a comment )
ilovewales
Sep. 12th, 2012 11:23 am (UTC)
*many hugs* School are clearly idiots. If at any point you want a hand tutoring BK with anything, let me know :)
dare_dreamer
Sep. 12th, 2012 11:36 am (UTC)
I second the tutoring, I was home schooled for a while i know some tricks. :-) XXXX
asparagusmama
Sep. 12th, 2012 12:50 pm (UTC)
Thank you both of you for the supportive offer. I may yet take you up on it :) I'm making no decisions until I get the lay of the land at the TAC meeting in two weeks and then seeing how the annual Statment review goes mid October.

Hopefully the TAC will be closed and I can make decisions based on what is best for my family and my daughter without having this shadow of social services and their inaccurate (to put it kindly) files on my so called mental ill health and 'controlling parenting'. The best outcome would be for the County Council special needs rep at the review to agree BK should be moved to the autism base. Fingers crossed.

Thanks for being their for us, and for all your prayers xxxx
dare_dreamer
Sep. 12th, 2012 11:28 am (UTC)
*Hugs, hands hot chocolate and starts knitting*

It sucks to go back on your B-Day, I'm lucky mine was occasionally the last day of the year.

I was hoping you could enjoy your self, if not only for a day, in the holidays. As i've said to many 'holidays weren't made to make you feel better they were made to make you feel worse and realise school is good.'

I'm sure that Jehovah is looking at you, knowing that all your hard work and pain will lead to something worth while and happy.

I'm back at college (look out for post near end of week or later today) now, I've got to do Maths this year as it will be my last year in college. I've not had my first maths lesson and I'm hating it already.

I agree with above, all schools are mostly made up of 'idiots'. If they don't know whats wrong for you, they try to make you think what you know is wrong, if there not listening to you their getting agressive because you haven't done what they've informed you is best. I've always said to my self 'my family know what is best for me as a human'. Keep on at them, they should listen. (if not thow big words at them)

*Turns on TV, Lets watch LEWIS*



Edited at 2012-09-12 11:33 am (UTC)
flowerpotgirl
Sep. 12th, 2012 01:06 pm (UTC)
Sending you hugs and the idiots at the school glares.
Makes no sense to put her in a class were she will be bored and more likely to get stress and be disruptive.
I would try writing a very factual letter to the school stating the main issues and keep a copy. Possibly copy in the Chair of governors and the governor responsible for SEN (addressed usually via school so do not need their name). If you get no reply then that implies they accept your concerns and suggested approach and any reply will have to be written. If they suggest meeting in person then use ME and BK's illness as a reason to refuse this time, but in a positive way - following her illness you are hoping for a better year and in order to achieve that you need some recovery time so that you can be at your best to support her and work with the school so that she fulfils her academic potential. If one of the governors
contacts you and you were happy, they could come to you.
There was more to this, but when I tried posting it I got a blank screen and backspace got the above portion, so the iPad obviously didn't like the end! Censored by an electronic device.



contacts you and you were happy, they could come to you.

I would also ask for a breakdown of where she sits in relation to her peers in each subject so that you have a picture of her strengths and weaknesses. Hopefully, this will also get them to look at her from an
academic perspective rather than focussing on other issues.
Probably teaching my grandmother to suck eggs, but I wish I could help. Feel free to ignore any idea that would not work for you, but have you considered approaching private schools about scholarships? I would say it only takes a letter, but we both know 'only' doesn't count when you're running out of spoons.
On that note, one of the few useful things I got from the ME service ( new referral sent May, but not sure how much good it'll do) was likening our energy levels to run down batteries which don't recharge properly. Mine seem to be getting nearer to the point of extinction, but Tesco don't stock people batteries - yet.
Another daft idea - make a list of all the good things that happened over the summer and/ or get BK to do the same, then put it somewhere you see often to remind you on bad days.
Hugs.
flowerpotgirl
Sep. 12th, 2012 01:08 pm (UTC)
OK, so it was just being stroppy! Is that more or less scary?
Or, more likely it was my fault, so Apologies for the stutter mid- post.
( 6 comments — Leave a comment )

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