Lesley
-
Content Count
96 -
Joined
-
Last visited
Posts posted by Lesley
-
-
OOooh that reminded me!
J loves the feel of skin - any skin.
When he was younger (18 months) we had to go to my gran's funeral - not as sad as it sounds - she'd suffered from altzeimer's for 10 years & for many of the family it was a relief for us & her.
Afterwards the wake was at my uncles house & a rare opportunity to meet all the old aunties who were still with us (my dad's aunties)
They were all sat round the sofas in the living room having a cup of tea when my dear little J methodically went round exploring up the old ladies skirts - he had discovered that there was skin at the top of their knee highs!
I was sooooo embarrassed!!!!
L
xxx
-
Yup we get the karate & climbing
Also picking the leaves thing - he also has to pick up sticks constatntly - even if we're in the middle of a road & a car coming he will have to get that stick!
Buttons in lifts - yes -
- & computers - we went to my daughter's open evening in the spring & he managed to systematically go round and crash all the computers in the classroom before turning them off 'cos they didn't work properly' meaning all the computers had to be re-booted manually & checked for problems caused by the crash.....!
I'm not sure he'll grow out of the computer thing as hubby (self-dx AS) is a computer programmer! He hasn't grown out of it yet!
And it's not just computers with him - he has to control the TV remote & 'flick' through the channels - if we watch a whole programme uninterupted its a miracle! (is pushing buttons a stim thing?)
L
xxx
-
Thanks for the support Viper -
I hope you'll soon be able to find a way forward after going to Guys - I know how exhausted you feel our mediation was 4 1/2 hours of LEA interigation!
And we din't have to travel through London to get home -
I was thinking of you all day yesterday and when I saw the news I was really worried for you - even if not involved you must have had a very frightening experience.
It has definitely made me worried about travelling on the 4th it being exactly 2 weeks on again.
Yes I think I'll probably try to take the car....
L
xxx
-
I am definitely looking forward to it - maybe once James is asked to do something he doesn't want to & he bites the teacher THEN THEY WILL LISTEN
Maybe then we'll be understood
Maybe they'll start giving us some support & support for sibling when she has to go to school with huge bite marks on her arm (I actually took a photo for evidence this time)
L
xxx
-
I'm scared to even ask this -
I gave my reassurances to Viper that they should still go to guys....
Our Nuffield appointment is 4 Aug - exactly 2 weeks on again.....
...perhaps we'll drive....
Any advice?
We had our mediation meeting yesterday & the LEA ractically admitted they were there to enforce their own (wrong) policy & still wont assess him.
They agreed for James to be seen by the EP & ASD advisor in Sept & arrange a review in Oct. Cant help thinking they wouldn't have done this without the independent dx which they claim they can give no weight to because it's 'outside of the system'
They are dodging the speech & language issue (the reason why we are going to the nuffield!)
Tribunal date 20 Oct
L
xxx
-
Why is definitely better than what we get -
'what's it made of?'.......
....'nuff said........
L
xxx
-
We asked at a National Trust place about this - apparently you don't need documentation to gain free entry as a carer of an ASD child
L
xxx
-
Glad you posted this Becky - I have never seen timescales on my EP either!
I have become the world's greatest knowledge on what an IEP should involve!
This comes under 'provision' in the CoP IEP guidelines - ie they have to quantify how/when this additional support will be provided
My IEP's are awful - I have never seen any success/exit criteria or outcomes
The LEA sent in IEP's to the tribunal which had outcomes filled in but we have never been sent them.
We have never been involved in target setting as parents
All of these things should be part of the IEP
Our speech & language therapist set targets for the pre-school SEN setting to follow but some of them didn't even appear in the pre-school IEP!
We have a tribunal hearing scheduled for October
Sent our ombudsman complaint last week (failure to administrate proper paperwork in IEP)
Going to global mediation today!!
I think you should ask a searching question like 'what is your school's IEP policy' or something like that.
I'll be asking mediation 'have you read the code of practice? do you know what it looks like & what it's for?'
L
xxx
-
I guess they're supposed to - its part of the extension to KS1.
My daughter had one when she left last year too.
Maybe you should ask your pre-school if they complete one?
The QCA has more info: http://www.qca.org.uk/223.html
L
xxx
-
Maybe we are in a unique position to be able to report this - I just wondered if anyone else had had similar experiences?
Pre-schools now produce a 'stepping stones report' which is sent to school for continuation in reception year.
James has been attending a SEN pre-school aswell as his mainstream for his whole pre-school experience (in fact he started the SEN setting 1st at age of 2). (SEN setting now denying he needs statement & disregarding independent dx of AS, ADD, speech & language disorder).
Guess what - our 2 stepping stones reports are COMPLETELY DIFFERENT!
Mainstream chart him as not even reaching some 3 yr old goals yet.
SEN setting claim he's half way into Y1 standards!!!!!
Classic example of reaching his potential with the right level of support?.........
Tribunal here we come... 
L
xxx
-
Thanx lil me for starting this post!
How long have you got?
He'll grow out of it
Maybe he'll suprise you
All children do that
It's just a delay
Hasn't he come on
He's made such good progress
He's not autistic - we'd have noticed
I'm not in a position to answer that
We just don't see it
He doesn't seem to meet the criteria
His needs are not complex or long term
His needs will be met in school
James' needs are known
L
xxx
-
Our AS son is James
L
xxx
-
We tried boxers too but gave up as it didn't hold the poo in very well - I think the last straw was having to clean out his wellies...
Lesley...
-
wow that's lovely...hold on to the moment...
Did the same with James & he wouldn't take it off.
Next day he wouldn't get dressed cos he wanted to wear uniform.
Then he wouldn't go to playschool cos he wanted to go to real school
Guess the moment wore off a bit quicker for me...
L
xxx
-
little people - pirates / soldiers / train drivers etc.
J has always been fascinated with big sisters dolls house - we find the little people everywhere. (Never in the dolls house!) (And they dont look good after the washing machine either...)
Bought him a lovely brio train set for Xmas one year - he spent the whole time getting the little driver in and out of the train.
Now started to foster this in role play - James is all the superheroes rolled into 1. Has big problems coming out of character.
Went through a huge 'green' phase once too.......
Lesley
-
Hi
We are booked in at the Nuffield Speech and Language Centre on 4th Aug.
It has taken 12 months of battle to get the appointment - there is no way I'm going to miss it
I'll be nervous on the tube but still going.
The terrorists need to know their way of scaring people into submission to their own ideas will not work.
We all have our own lives to lead and if we let them disrupt that then they are winning.
Not going to let that happen!
Lesley
-
We had to soldier on - took 6 months to cotton on (daytime)
Problem seems to be centred around adverse reaction to touching toilet inherited from dad (also AS self-dx)
Going to school in sept
Still soiling in nappy at night
Lesley
-
Yes -
My son (AS dx), husband (self-dx AS), father in law wont use public loos.
Son can't touch the seat - is ok if you put it up for him.
Hubby can't touch bins either
Lesley
-
Hi Tracey
I teach in a special school for students with AS
We are trained to deal with violent rage attacks
It is in our school a recognised part of AS
Lesley
PS My son is 4 (AS) and bites / lashes out at home every day. Pre-school think he's an angel. I think he goes through meltdown when he gets home cos he's been suppressing his frustration all day.
-
-
Would love to join you - always wanted to empower my growing knowledge on the subject...
My husband (self dx AS) has always said he once one statement etched on his gravestone -
'Hater of incompetence'.......
sums us up really
Lesley
-
oops managed to post twice how do I delete it?
-
Yes as far as I'm aware.
All the students at our independent special school for AS (where I teach) are statemented.
I was advised my son wouldn't get a place in the speech and language unit attached to a local primary school unless:
1) He had a statement (we are fighting for assessment)
2) His difficulties included speech and language AND other difficulties that impacted on it (Got that one - Speech & Language disorder, AS, ADHD)
2)The LEA decided that was the best place for him and decided to place him there (we get the hint that parental views don't, and never will, count)
Our son starts reception year in sept in mainstream with no extra support in a class of 28. So far his best report proudly states he can concentrate with adult support for 10 mins.
I'm going to drop him off & run
Lesley
-
We have already sent the independent dx reports, whether they wanted them or not!
Going to tribunal in Oct to make them assess...
...Hassling over statement content seems a dream at the mo!!!
Lesley
Its not over till the fat lady sings
Carers Centre
in Help and Advice
Posted · Edited by nellie · Report reply
You have all GOT to get in touch with these people
http://www.carercentre.com/
They are part of the Princess Royal Trust for Carers
Had my carers assessment this morning:
Our sons SEN Early Years placement should have put us in touch with them the day he started there! (2 years ago)
She couldn't believe the LEA were 'weighting' the AS diagnosis as it is a medical diagnosis that has nothing to do with how the LEA function
She couldn't understand why they wouldn't statement him & her eyes nearly popped out of her head when I told her it was merely ASSESSMENT we were going to tribunal over!!!
She says yes we will get DLA continued (due to finish in FEB 06) & also mobility allowance (lower rate) She has just got mobility for a 3 year old at lower rate!
Not only that she is coming to fill in the forms for me next week!
And she is going to claim for the higher rate until my AS son is 18!
And she says if its only granted every 2 years she will fill in the forms every 2 years for us until they get the message
And she says if they dont get the message & dont award it she'll take them to tribunal!
She'll also do my carers allowance claim, and is sure we can also benefit from higher child tax relief & possibly something off council tax too
There are specialist free play schemes for my son where he can go (youth club type thing) where he can go & not worry about his behaviour cos they are all specialist trained - they offer days out in the holidays & hire play centres & stuff to give parents a break
They will come to tribunal with us and to all school reviews/meetings/assessments etc!
There is a kids carers for carers group where my NT daughter can go that do activities (bit like above, youth club type thing but free & targeted at siblings) that offer specialist support for her
There are training schemes on offer for me to retrain profession when I am ready
as I am about to finish my job to create 'me' time. Teaching is no good for me any more as I haven't got the planning / marking time at home now hubby is self-dx AS too
It is all wonderful wonderful wonderful
All our prayers & problems are answered
If I need a chat & coffee they'll come round immediately
Bit cross that all this was available to me & no-one told me
Fancy having someone offering to fill in all my DLA / carers allowance forms!
Just ring your local carer centre & ask for a carers assessment!
wow wow wow wow wow
L
xxx