ellisisamazing
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Posts posted by ellisisamazing
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Witsend, That sounds like such a nice birthday!
So glad you all came through happy and relaxed!
We are seriously considering getting a dog for Ellis........will have to research lurchers now!
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My Husband initially saw his GP, but had to go private to find out he has ASPIE TRAITS!
I could have told him that and saved him a small fortune!
It's not really made any difference to him, but books and reference articles have!
Good Luck!
The Autism File is a good place to start, lots of Adult written articles and some advice on how to go about it! (WHSmiths stock the mag!)
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Thanks JsMum, I will read that in a minute!
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Thanks Sue and Mel!
With regard to the cracker thing, that's his staple diet....I think the paper is another food group in his head!
We have thought about the rice paper, but agreed with El's consultant it would probably just accellerate the issue...because off GDD and SMI, he has short term memory and the mental age 18 months so he wouldn't make the connection with the rice paper....Plus once he goes to bed, I can't stay there all night to watch him, we need a closure on this issue, hopefully we will sort something out! Thanks for the thought, though! <'> -
Well Done!
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Good to hear from you, Amanda
Best Wishes to you and your family
<'> Lisa x
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Thanks for your replies!
<'> Ellis came home from school yesterday with a note from his teacher, he apparently also tried eating a book yesterday and had to be stopped which resulted in a meltdown and him banging his eye!
He was in a foul mood last night, rolling around grunting and screeching, kicking out and biting his jumper (he never bites people luckily but his clothes always take the brunt!)
After almost two hours he finally calmed down and then wanted to cling to me on the sofa and just cuddle, which was lovely!....Then bed time came and for once he fell asleep!.....But by 11pm was awake again and eating another lining paper panel!
I told him off, but seconds later he was off again!He also kicked off this morning having his bath, so has gone into school with a note explaining all the at home stuff so teacher is well prepared!
His sleep or lack off is shicking to me! It has been basically six months on, six months off with him, well seven this time!
So glad to have people who understand, Thanks again!Lisa xx
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Thanks Donna
<'> The irony is he is seriously iron deficient
<'> , has foody issues but will happily eat all non edibles! -
Thanks!
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Thanks Pearl!
<'> Just realised what a nutjob I sound recalling my double decker driving!
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El has always been a licker and in the past we have had obsessions with mouthing sand, metal, plastic, soil, glass, shoes, car wheels, dusty bits of exterior wall when out etc
It has been paper for months now, initially from the printer, so we stopped leaving paper in it, then moved onto newspapers/magazines, so we stopped buying them....nothing worse than reading a page and then finding you can't finish the article! Then it moved onto thick as a wall cardboard childrens book's, so they are now banished....then regular books, so they are relegated too....and last weeks discovery was around 20 CD's with mouth shaped holes in the inlay covers......Hubby is very unhappy......I had the foresight to already move and hide my part of the CD collection in our bedroom...he refused, claiming "that we might as well not live normally then"....I wasn't aware we did!
Now half a panel of wallpaper by his bed, last night when he slept a grand total of around 40 mins all night!
I ended up hallucinating due to my lack of sleep earlier this morning....I was driving a double decker bus from the upper level, up and down our local high street that had just been re-tarred in chocolate fudge cake to the theme of BANANA SPLITS!!!
Weird...I know!
Wish I could stop this obsession of his.........
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Totally agreed Karen....
I think that we all made our sympathies to Amanda and her family known in her original thread and I feel that once was enough, until if and when Amanda decides to come back here...RL will be raw and hard enough to deal with right now, without her having to deal with FM's and their outpourings also....It's touching to have empathy, but also very important to have some respect and boundaries for the grieving family and not add any extra pressure to an already difficult situation.
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After Thomas was repeated at 4pm today, anybody watch?
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Amanda and Family, I have not been on here for several weeks.......your thread was the first one I saw....and I am so very sorry and saddened to hear of your darling boy's passing. I think you are exceptional and a very strong woman to be able to try and make a christmas for your daughter. I can only say I wish you well and sincerely hope that you are able to find some comfort in your wonderful memories.
I will be watching Dr Who and thinking of you all.
Take Care, Lisa x
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Thanks Shortcake and Lya!
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Thanks Annie and Kathryn!
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Thank You Flora, It's nice to have somebody who understands!
<'> Very glad you are well!
Lisa xx
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Thank You Claire and Pearl!
<'> <'> Joy, that is really making me laugh.......thanks!
Are you Deluxe Multispeed or Standard?!
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Thank You, Joybed!
Fingers Crossed!
Interesting name, btw!......is it a naughty reference?!
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Hi all,
I have been off line for nearly a fortnight......my hard drive croaked......felt like I was lost!
Then a lovely old school friend was murdered, so very sad and shocked and appalled about that......then I discovered a breast lump in my left breasticle, which I was quite calm about until my Mum who I hadn't yet told revealed to me that her best friend who was given the all clear from BC after a lumpectomy only four weeks ago, had been given the dreadful news that she needs a mastectomy as it had returned so quickly and agressively!
I have seen my GP and after an examination with the doc I have been reffered to the Breast Clinic at my local Hospital for a mammogram....I am just 34, and astonished that us ladies are not eligible for a routine mammogram until we reach 50!!!
Please Ladies and Gentlemen, make sure you all check your breasts and manboobies every few weeks....
El is doing great at school and loving the horse riding still.....methinks I have a showjumper in the family....he looks so pompous in his riding hat!
Anyway, t'is great to be back with friends!
<'> Hope you are all well?! -
Di, You're welcome!
<'> I think that by having James' view, plus yours will give you a fighting chance of success, the more info the better. Make sure you detail EVERYTHING, no matter how insignificant it may feel, you need to 'paint' them a picture of your day to day existence. I think that part of my past problem was underplaying how difficult and stressful things can be in the DLA forms and expecting the "professionals" to understand.....so detail is very important. I even mentioned how at most times I have to take El into the loo with me cause I can't leave him at the moment because he is liable to try and climb windowledges/lick anything inedible/poke electricals with his tongue! Basically emphasising the complete lack of Social life/Me Time/ Personal Space!!
And also how out and about I have to keep him away from cleaning ladies.....last time we were out without his buggy, he ran off from me and when I caught up with him he was licking water off his hands from a stray bucket filled with bleach water in the local market!!! I was so mad that the cleaner had just waltzed off and left that standing by a stall!
Keep at it
, you know your family deserves a break! <'> <'> <'> <'> Lisa xx
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Hi Di!
We didn't have to go to a hearing, basically El's claim was renewed after his first award ended in Aug 2007 (the first was for two years at MRC only), I sent the forms in on 29 June and we recieved a letter three weeks later to advise El's claim has been reawarded at MRC and LRM also, and that would come into force from Aug this year. At El's paediatrician appointment in July, she asked me what rates El was on and I told her, she was shocked and stated that in her opinion El should be in receipt of HRC and HRM as she was aware I was basically sleepless cause of El's nocturnal activities and also his lack of danger/fear/road sense when outside, so that's how I came to appeal!
I contacted them and was put through to a lovely lady in Reconsiderations dept, and it was her who said the DLA forms were pretty much up to date and so to add the additional submissions only and the consultant's support letter. She also was very understanding in that ASD can be very changeable and that sleep patterns do change from time to time!!
El's consultant had to make a confirmation of him having Severe Mental Impairment in her support letter, which I think is a strong feature in him having been successful with the renewal, It's not so nice seeing this confirmed in writing but you have to put it aside and remember it's for the right reasons....
I think that getting your Elder son to write his view is a great way of "humanising" your family situation, he sounds like a considerate son and it can't do any harm, I'm sure that will help you greatly!
It seems that you now have a great amount of support in appealing this now and I really do wish you the very best.....and that Doctor sounds like an arrogant, ignorant numpty! Stuff him!
Please keep us all updated!
Oh, and it took about seven weeks from start to finish from appealing to recieving HRM and HRC in the bank, it was backdated to June this year!
Lisa xx
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Thank you again Lisa.Just looking through now and realised I had left the main letter about this in the envelope lol
They have given until the 29th of this month.
So do they compare this with the tribunals decision as the original one as the dla decision was made by these people at the hearing ?
And you are right with all you have said about sleep, and yes my older son does need his space for studying and this can also be difficult if Dan the man is keeping us awake.
You know what thats like and with me I suffer high blood pressure.
I cannot believe the tribunals wrote on the statement of reasons that they do not accept that Daniel still attends school 90% of the time with little sleep, like I said earlier this makes me out to be a liar in their eyes.
They obviously do not understand what ASD is like.
My adviser from disability advice project is helping with these forms next week, so now I will also get in touch with all the specialists Daniel is under to ask them to support this.
What I was mean't to ask you was 'Do I have to fill all of the forms, as these are all separate now'?, as Daniel has both lrc and lrm I want to mainly fight the care rate ? Thanks.
I expect the adviser will know too, but just want to be prepared on a diary form, which is a great idea, thanks hun.
Look forward to hearing from you again soon.
Di. xxx
Hi Di!
<'> I personally did not fill the forms in again, I just typed up a six page letter voicing my concerns, issues and every day worries regarding El also telling of various scenarios/altercations/risks we have had whilst out and about, I also enclosed a 4 page A4 "diary" to show a true reflection of what our days and nights entail....I believe the DWP used my original DLA forms as a referral.
El has a 95% attendance at school and nobody has questioned me....having said that El's consultant is very supportive and is fully aware of his sleep issues, so I know she would be quite forthright if they had opposed the appeal!
Take Care
Lisa xx
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Thank you again Lisa.Just looking through now and realised I had left the main letter about this in the envelope lol
They have given until the 29th of this month.
So do they compare this with the tribunals decision as the original one as the dla decision was made by these people at the hearing ?
And you are right with all you have said about sleep, and yes my older son does need his space for studying and this can also be difficult if Dan the man is keeping us awake.
You know what thats like and with me I suffer high blood pressure.
I cannot believe the tribunals wrote on the statement of reasons that they do not accept that Daniel still attends school 90% of the time with little sleep, like I said earlier this makes me out to be a liar in their eyes.
They obviously do not understand what ASD is like.
My adviser from disability advice project is helping with these forms next week, so now I will also get in touch with all the specialists Daniel is under to ask them to support this.
What I was mean't to ask you was 'Do I have to fill all of the forms, as these are all separate now'?, as Daniel has both lrc and lrm I want to mainly fight the care rate ? Thanks.
I expect the adviser will know too, but just want to be prepared on a diary form, which is a great idea, thanks hun.
Look forward to hearing from you again soon.
Di. xxx
Hi Di!
<'> I personally did not fill the forms in again, I just typed up a six page letter voicing my concerns, issues and every day worries regarding El also telling of various scenarios/altercations/risks we have had whilst out and about, I also enclosed a 4 page A4 "diary" to show a true reflection of what our days and nights entail....I believe the DWP used my original DLA forms as a referral.
El has a 95% attendance at school and nobody has questioned me....having said that El's consultant is very supportive and is fully aware of his sleep issues, so I know she would be quite forthright if they had opposed the appeal!
Take Care
Lisa xx
Goodbye
in General Discussion
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Amanda
<'>
I admire your strength
Take Care