Log in

No account? Create an account

Previous Entry | Next Entry

This Monday BK had her first controlled assessment in her English Lang GCSE - after just 6 weeks at college, only 3 in proper classes due to the disorgnaisation, and with the assessemnt for the dyslexia only the Friday before. she had to write an arguemntative peice, rhetoric if you will, and her topic that she chose was, "Only Women, Actors and Gay Men Wear Makeup ", which I guess has many of you grinning, when you think of her major conribution to our Lewis AU :) She got to write it, preapre it, and was allowed to take 50 words of prompts and spellings - guess what, she just took spellings, although she is not allowed to lose more than 5% of the mark due to the dyslexia. She was stressed all weekend, I was stressed all weekened, as she did nothing but procrastonate and no revision or prep or anything, Baring in mind the meltdowns if she had to write anything by hand even three or four years ago, you undderstand my apprehension at her not writing it out over and over again. However, she treated it like a script she had to learn, learnt it on the bus, reproduced it verbatum in half the time and had 45 minutes to check her punctuation, etc and tidy it up. I am so proud of her, really. if she lets me, I might post her arguemnt too, as it was very good :)

I'm struggling on, still no where near as many base spoons as before the flu. My target is still a healthy meal, two more healthy snacks, our meds on time, Bk on the right buses and in class clean(ish) and with the right paperwork. Slowly getting there. Only managed to write anything three times since I last posted, but one was a bit of Poisoned Minds in long hand in Magic Cafe, while eating yummy food :)

Henrietta has a bucket list (did I say that I've been told she is obsolete and the wheelchair maintenence people have told the Nuffield she needs to be replaced, but we bent the rules last time as BK was 7 and needed me, and with cut backs, lets call in my bucket list too :) (actually I'm crying inside, too many changes and I love my powered wheelchair, thank you flowerpotgirl for immortalising her in a crack fic!).

Anyway, the first week of college, when it was chaos and there were days off, we went to Stonehenge at last. owlbsurfinbird you were so right, it was so easy :) Becasue of the lack of lifts at the moment we went to Sailsbury via Bath so we could be on platform 1, which has the ramp and not a lift, and came back via Basingstoke and Reading so we arrived on platform one :) There was a Tour bus that stopped just outside the station who tried to sell us an all inclusive ticket which he claimed would be cheaper but BK wouldn't have it, which was just as well as she got in for free as my 'carer' (and free tickets she can always be my carer!).  the centre was amazing and had the most divine lentil and tomato soup that was gluten free, dairy free, nut free, coconut free and BK wants me to try to recreate it (oregano I think). I had always worreid ti would be a disappointment, too touristy, too fenced off, and although it is both, as the bus from the cnetre to the stones approached them I could feel the power and spirituality and age of them (and no, it isn't anyway psychosesmatic, I go backwards, have a look at a wheelchair bay on a bus). We spent about an hour there, just sitting and soaking it in. there were some art students taking shots of a friend in various historical costumes. BK took loads of pictures and I tried to get them off her facebook page to show you some, but it wouldn't work.

Not on her list, but connected, that September we also went to Avebury the next week, and parked BK in the museum and I walked around with my crutches for the first time since BK was two. I was in agony and bed bound for a week but it was worth it. and this is funny, for years we've talked about talkign the crutches but didn't know how, so we spent ages trying to tie them on the back and then suddenly I looked at the mysterious bar behind the seat back that I could never figure out why it was there, and the crutches posted through and we're secure. *faceplam 'oh, that's what it's for! then the week after that was my birhtday and Mum drove us to Uffington to White Horse Hill and we had a picnic and enjoyed the last of the late summer/early autumn sun and warmth

Next on Hen's bucket list is the other place - yes, tomorrow when BK breaks up for half term we are off to Cambridge on the coach for a couple of nights in Premier Inn. I booked so far in advance I got a good deal. and on Monday we're off to Bath for the Pump House, Assembly Rooms and baths and at some point, with our combined birthday monies, we are going to go to the London Eye.

treats to stop me going crazy, as day to day, my mind is failing me more and more - twice today on the way to the laundrette and once last week in East Oxford on the way to Magic Cafe I completely did not know where I was, or even when or was, or sort of not even who I was (in time and space, I knew  who I was, just not when in my timeline or why I was in a wheelchair) it was terrifying. is this normal too for perimenopause, stress and ME/CFS brain fogginess? Because it is truly far more scary than forgetting appointment. or to phone the doctor, or where important docuuments are or what day it is... BK has the transfer from her Statement to the new system and a PIP claim to replace her DLA and I am flunking out on all of it, every time I rememeber I must phone our GP I'm out and forget when I get back (no credit on phone at mo, just free text bolt-ons). It's worryng and frustrating and scary but not as much as really not knowing where you are, as if you've just beamed in form another universe...

Talking of which I am loving Phillip Hathaway - no spoilers, but as BK predicated, it might make finishing the AU case fics and back ground bits hard, as he is pusing Joe out of my head :( And I am loving River on BBC1 (watching Lewis on plus 1!)

And I am not loving new series of DW. I hate Stephen Moffat. Doctor Who has defined me since I was about three or four, the Doctor kept me safe, I took his example, and I went through a lot of shit in the family and with school, and I didn't activily believe in God til I was 9 and have a religion of any kind til I was 15 so there was always Dcotor Who to cliing to in the abuse and bullying. If I'm not a Doctor Who fan, who am I? Sorry, exestential flu.

And the spellcheck has vanished, so apologies for that.

Finally, majordaiko thank you so much for all your lovely messages, I will reply as soon as I have spoons. Enjoy your summer sun xxx

AM xxx


( 17 comments — Leave a comment )
Oct. 20th, 2015 10:46 pm (UTC)
Wow, you have been busy!
I got as far (couple of miles) as the garden centre today, but it is so nice to get out while the weather stays nice and they did a lovely breakfast.
BK's relaxed attitude to her assessment is great and typically teenage. I am so glad it is working out for her.
I have a clip for a stick/crutch to go on my wheelchair, but it apparently doesn't fit, even though it is a basic NHS one. Do I need a new clip, a new 'workman' or a new wheelchair (very heavy)?!
Given all that you have been doing on top of keeping day to day life on track I am not surprised you have felt foggy. I find it is too easy to underestimate the time lag on symptoms after exertion and end up feeling surprised when things catch up with me, but physical symptoms are easier to allow for than mental ones, which can be scary as you feel you are losing control.
I try to start forms quickly as it is easier to continue than to initiate a task and once I know the questions I can think about answers before picking up the pen again. And I tend to ignore the ones I am worried about.
A list is the only way to keep track of jobs, but you have to remember to add it to the list!
Enjoying Lewis, but I do miss Innocent, she was a great foil for the double act.
Can't believe it is half term already, especially as this is A's last year.
I would say be good but that's no fun!
Oct. 30th, 2015 08:12 pm (UTC)
Yes, but with lots and lots and lots of bed rest in-between :)

Garden centres are always nice, my Mum always takes me to get me out when I've been unable to get out. I'm expecting with the onset of winter I will be far more housebound :(

The fogginess seems to be almost permanent these days, but as Lewis said in a new ep - what is life but a series of moments? So I'm trying to enjoy the moments more and stress less, until I remember something very important that I forgot and then freak. and with transfers for BK from the statement of need to the new thing and from DLA to PIP is is all paperwork and stress and fear, so it is nice to forget it all, that we might, any day, drop of a financial cliff and she won't be able to get to college, see her tutor and therapist...

I'm enjoying Lewis much better, especially the writing :)

We've been more busy, we've been in Bath. I like it more than Cambridge (where we went last week!) The bucket list is on going.

Hope you have sufficient spoons to give you an okay time right now. the change of season and weather is always hard, I find.
Oct. 21st, 2015 08:49 am (UTC)
Congratulations re the paper about make-up - and I'd love to read it if she lets you post!! You must be very proud. J has meltdowns about writing with a pen or pencil. He says it hurts his hands and some research suggests that this is actually one reason why autistic kids have problems with fine motor skills. However, the school are reluctant to let him use a tablet or computer so we perservere.

Your outings sound good. And the weather has been quite kind. The autumn colours here are glorious so I hope you've enjoyed the journeys as well as the destinations.

The memory stuff sounds like stress. You have an enormous amount going on, even if some of it is good, and I would think your brain is just refusing to process it all. Try to relax about the memory and it should settle down! Also, make sure you have enough to drink on journeys - water, preferably - as dehydration can cause memory problems, too.

We're watching Dr Who. We (husband and I) both like Peter Capaldi. I hated the story with the ghosts but I've quite enjoyed the Vikings and am looking forward to more of 'Arya Stark'.
Oct. 30th, 2015 08:03 pm (UTC)
I asked a few times but she didn't seem to be paying attention and didn't give me a yes or no, but I probably will get a yes when she's in the mood to focus. We've been having a relaxed break away from home, and all she's done is read, write, watch TV when not looking at new places and things, which is a bit stressful if enjoyable to someone on the spectrum.

BK was exactly the same until about 2-3 years ago. I could never get her to write more than a paragraph. her tutor was fantastic and patient with her and got her not to care so much about neatness, but once I was home educating I just let her write everything on her laptop - she has several epic stories she is always working on, and one day, we were out, and she asked for a notebook, and writing just what she wanted, for her herself, so gave her confidence. she still does struggle and has to be in the mood, but considering that when she was J's age, I thought she would never write, she is just amazing me! This is one of the problems with schools, they want to fit square pegs into round holes and have targets for attainments. However, have you had him assessed for dysagrophoria? it is similar to dyslexia, and recently recognised, but it does mean that the way the brain is wired up makes writing an actual painful experience, either with the hand an/or arm or gives headaches. I may not have spelt it right, the woman who runs the health food shop at the bottom of Cowley Road who home eds her autistic boy told me about it. It is a shame the school won't let J have that tablet or laptop, as i feel it might move him back to pen and paper eventually, but in the meantime, will build confidence and stop him falling behind due to handwriting issues. Why are schools so stubborn?

I do hope it is just stress and ME, I really do! For someone who always had a photographic memory, this is a big shock, I can tell you, as well as being scary! I always carry water with me, and try to keep hydrated, as it affects all kinds of other symptoms if I get dehydrated.

If you just watch without really thinking then some of the new Stephen Moffat who can be fun - however, I'm a die hard DW fan from early childhood, I remember seeing so many meanings from the age of 8! I finally watched a Christmas present, the DVD of the Happiness Patrol, and it comes with two fine documentaries, and both really highlight the paucity of new Who's writing (but all TV is really dumbed down these days, so...)
Nov. 2nd, 2015 07:43 pm (UTC)
I hope by now your memory problem is improving!

I couldn't find any links to any words like dysagrophoria even with different spellings so the reseach clearly hasn't reached Google yet. However, I don't think it sounds like J - he doesn't have pains in his arm, or headaches. The pain is in his fingers and they think that anxiety is making him grip the pen or pencil too tightly. Still - all research on the subject is worth doing and I will tell my daughter about it.

My daughter, like you, is a die-hard old Who fan whereas my husband, who is a film maker, loves new Who. I just watch whatever is on as it's merely entertainment and not a 'fandom' for me! So yes, I just find it 'fun'!!
Nov. 6th, 2015 04:01 am (UTC)
Perhaps it's dysgraphia: http://ldaamerica.org/types-of-learning-disabilities/dysgraphia/

If you are interested in a list of things you can do to help with hand strength, hand pain, letter formation, etc.--PM me on LJ. It's a long list from the days when we did Handwriting Without Tears, but it worked. :-)
Nov. 12th, 2015 05:44 pm (UTC)
Thanks - and sorry about the delayed reply. I've had a look at the dysgraphia site (and thank you for sorting out what it might be!!) but the only one of those symptoms he shows is the pain in the hand, which we suspect is from anxiety and gripping too tight. His writing is fine when he does it - better than some of his peer group though not as good as the perfectionists! He isn't keen on any art activity that involves fine motor skills and yet has shown himself to be more than capable. The anxiety seems to be linked to a desire to do really well, and the grip stems from the anxiety. He also 'ticks all the boxes' on the PDA syndrome, so will resist all efforts to help.

Dec. 2nd, 2015 08:31 pm (UTC)
It maybe just a case fo time, as it was with my daughter - maybe you need to try to find out what he likes/is prepared to write about or draw or colour in, and arrange for electronica to lose battery for a day, so he gets bored.

And Lego building and all sorts of construction toys too will build up fine motor skills and confidence without seeming like it is educational or he is being forced into it.

% years ago I despaired of Bk ever writing more than a sentence, two if we were lucky, but now she is coping with note taking at college and has notebooks full or her fic ideas. If you told me then, at 11, that at 16 she would be writing fluently with no anxiety, stress or pain I would not have believed you! Hindsight is a wonderful thing, isn't it, but the best I can do is say be patient and try not to let him see that it bothers you and your daughter, even if it does the school.
Dec. 2nd, 2015 08:46 pm (UTC)
I think possibly we're part of the problem because we do all our communicating online, which he sees, and daughter would be more than happy for him to write sentences online. They have just said he can do half his sentences online - huge relief all round. He composes the sentences beautifully - absolutely to the point, no typos or spelling errors - wants to correct the teachers' English (his is better) - and so on.

He has lots of construction toys but is less than enthusiastic. If the electrics failed him he'd be outdoors on the trampoline regardless of the weather (has been known to grab every towel in the house to dry it off) or begging to go either swimming or to the park on his bike. Daughter gets exhausted as it is.

You may well be right about the writing improving with age - we can only wait and see!! Although I suspect that by the time he's 16 all the kids will be using a kind of cross between a mobile phone and miniature keyboard. Pens and pencils will be relegated to the art class and museums. ;)

He's not well this week (cough and cold) and is doing a lot of spinning and being aggressive as a result - it makes you realise just how much control he's exerting when he's well.
Dec. 2nd, 2015 09:01 pm (UTC)
This new E H and C plan seems to give more power to the parents and child, is it possible to get provision for a laptop or tablet to be used in class, and exams later on, written into it. BK's tutor wanted this right from the start, but I found out in the transition this was never put into the statement because the school claimed they would provide one, and never did. I understand this can't happen in the new system (fingers crossed). If he can do all his writing now on a laptop he might decide he loves expressing himself so much and will one day chose to move to paper. or not. In which case, if he has the right assessments, can use the laptop with spell check turned of in any future exams.

We had the same problem with Bk at primary school, but this was correcting spoken grammar of her TA and teachers as well as all her classmates.

The problem, in my experience, is the curriculum tries to fit children into developmental boxes, ad there is a spectrum across the NT children, before we get to the autistic one. Plus they want to force ASD kids into behaving and fitting it not NT boxes. Relaxing around him and praising him if he writes even a word on paper and letting him write with a keyboard would be my answer, but then i had the luxury of being able to chose to take BK out of the school system, and not everyone can. Plus Oxfordshire is probably the worst provision in the country, so it is worth asking for him to just be allowed to type in class.

Trampolines in the rain are fine :) or at least I think. Pre vertigo, it was Bk's chill out zone and meltdown prevention.

That might be the case :0 or we might go back to old fashioned pen and paper to save money, or if there are even more research papers about screens and children's IQ. Japan has taken it so seriously it has removed most computers and tablets from their primary schools, I was reading.

he probably feels awful and can't express it. Does he have a punch bag or a safe soft space he can go to hide from his feelings, as it were? Listen to me, if it were only that easy... but he is probably feeling awfully ill, but it doesn't make it way for your daughter! I hope he recovers soon

Dec. 2nd, 2015 09:16 pm (UTC)
He could have a laptop or tablet - there is funding or his parents would provide one. But school insists he should be practising his handwriting and also that they don't like allowing one child to have something the other 29 can't have. Daughter says if she had even 1p for every time the other 29 have been mentioned she'd be rich. The LRA (Manchester)are reasonably helpful but they give a lot of discretion to schools. And we do hear about schools that are much worse so we don't want to 'rock the boat' too far.

At home he has cushions and a space under his 'captain's bed' - at school they have finally decided to be magnanimous and use a small meeting room for him to chill out - but there is nothing in there other than normal tables and chairs.

I have just finished reading NeuroTribes by Steve Silberman - a fascinating account of the history of autism research. It actually made me feel we were quite lucky to be living today. But there is a long way to go!
Dec. 2nd, 2015 09:27 pm (UTC)
This is so typical and makes me so cross. As a friend of mine said years ago (before BK was diagnosed) about the lack of support her own son was getting - 'they wouldn't make the blind child paint because the other 29 were, they would get a TA do do a textured collage in art instead. Would they get the physically disabled child to get out their wheelchair to run the three-legged race on sports day? No! but autism is invisible so they don't feel obliged to recognise its needs!'

How strong do you and your daughter and son in law feel? Could you take on the school? if the LEA and EP is behind you, you could threaten disability discrimination? What about his right to access the curriculum and not fall behind? Is that not equal to the other 29? Because rocking the boat is the only way to go, other than home ed. My daughter, who I just told what you'd said (I hope you don't mind) says 'rock the boat and keep rocking the boat! it's the only way to get anything like the support he -or anyone- needs!'

At least your daughter has a partner (I assume, or at least a dad who is around) so is less likely to go through what I did trying to get what my daughter needed.

Getting schools to understand sensory overload and the need to chill and be quiet and have a comfort item is another battle. Don't get me started. I don't know why it is so hard. Colleges get it. many work places get it!

I've read a review of that book and so want to read it. My daughter is exceedingly lucky to be living today, although with girls, the recognition and diagnosis and support has only begun in her life time!

And there is a long, long way to go. Especially in schools.
Dec. 2nd, 2015 11:39 pm (UTC)
My daughter has a very supportive partner (Jamie's dad) but he finds it almost impossible to get time off work to accompany her to school meetings.

The fear, if we keep rocking the boat, is that the school will dig their heels in and push for Jamie to go to special school which at the moment none of us want. We have said exactly the same as your friend. Teachers make incredibly stupid and insensitive comments - like telling G (my daughter) she should teach him not to have meltdowns in dangerous places such as corridors or doorways. They wouldn't dare, I suggest, say this about a child with epileptic fits. G fights hard, and things have improved out of all recognition in the three years and a bit that he's been there. All due, I think, to her insistence and her impeccable research.

We saw that book reviewed in New Scientist. It was a terrific read on so many levels. Try to get your library to order it for you - it's something your neighbourhood should have!
Dec. 2nd, 2015 08:34 pm (UTC)
Yes! Exactly that! I should have known you would know, you are a genius for special needs and autism support. thank you :)
Dec. 2nd, 2015 08:42 pm (UTC)
I have good days and bad days with the memory, but I'm now waiting for an ECG and an MRI so we might get to the bottom of it, if it is more than stress and exhaustion and the change :) For me, only 6 or 7 years ago, I still had the almost photographic recall I'd had since early childhood (with the one deliberate subconscious deletion!) so it is very hard for me, as I never ever had to get used to writing notes or use diaries or anything and now if I write myself a note i lose it :)

The lovely owlbsurfinbird has helped with that now :)

I'm trying not to get snarly and angry at how it is prgressing. i shall watch this Saturday with interest and bated breath, with an open mind, and see if it goes the way I'm expecting.
Dec. 2nd, 2015 08:56 pm (UTC)
I don't know if you're up to date on Who, and don't want to give spoilers just in case, but I hated the last episode (Sat 28th).

And yes, owlsurfinbird told me all about dysgraphia - aren't people on f'lists and in comms wonderful? But we don't think it applies to him. It's his fingers that hurt and we suspect it's anxiety making him grip too tightly.
Dec. 2nd, 2015 09:07 pm (UTC)
Yes! I sort of thought the idea might have worked with a different writer but, um... and don't get me started on Clara's exit! Magical Realism, I can't think of another single episode in 52 years! I did like the fact, that written by a woman, Clara was allowed genuine feelings and emotion, including grief though.

They are - I've had such wonderful support since I've been on here :) and anxiety is a killer with anyone on the spectrum, and that's what it was with Bk, but the schools put her under so much pressure which in turn stressed me out so I put her under pressure and the anxiety grew and so on... But she wrote a controlled assessment last term, and another next week, and she is fine about it :)
( 17 comments — Leave a comment )



Latest Month

August 2019


Powered by LiveJournal.com