edith simon
-
Content Count
89 -
Joined
-
Last visited
Posts posted by edith simon
-
-
Interesting my answer was not going through.
shortly i repeat.
We went her resigned from her job.
But we lost and suffered for 3 years.
through hell as soc.service and a headteacher made flasa allegations against us as parents.
3 years of fight chi8ldren we nearly taken away.
a 10 tyear old autistic ,a 4 year old and a 15 year old.
solicitor,court,parents against injustice org ...etc
social worker was dismissed ,manager of CDT had a breakdown,headteacher resigned.
but nobody can give us baxck the 3 years and the fear in us an in our children eve3n afterwards ans innocent.
i fully symphatise who went trhough sg like that.
all the best Edith
-
I'm on a combination apparently known among psychiatrists as California Rocket Fuel - Duloxetine and Mirtazapine. As far as I understand, a study in California a few years ago found that one of them had the effect of 'turbocharging' the effect of the other, hence the nickname!Also sleepers (Zopiclone) and sedatives (Diazepam) but not every day.
Adam
Edit: sorry, I didn't read the survey question properly. I'm someone with AS (plus depression and acute anxiety disorder), not a relative.
Sorry I was on antidepressant and I am a parent.
i did not understand it well.
edith
-
My daughter has been under the care of the clinical psychologist at the local children's development centre for the past 18 months. The psychologist is leaving and has been told to 'wrap up her cases'. She offered me a diagnosis for my daughter of "high functioning autism". I accepted the diagnosis but then thought about it for a few days, phoned the psychologist and said I didn't want her diagnosed yet and that I wanted to see how she got on at school - which was the original plan suggested to me. I don't know if I've done right. I DO anticipate problems at school but do I need a diagnosis to get help for my daughter? My daughter only has a mild spectrum disorder and there are family and friends that refuse she has any problems. Any thoughts appreciated.I think definitely yes as if thre is problem at school you will not get help otherwise.
I think if she turned out to be not on ASD then later you can remove it.
Edith
-
Could you get a cheap pay as you go mobile and give that number to the people taking your son out to call you on, then you can ignore the other phone / let an answer phone pick it up.That is a very good idea only I have to give all helpers a mobile . I think i will try.
thanks a lot
Edith
-
we are on caller preference scheme, its free and means the company can be fined £1000 for cold calling younot a lot you can do about other calls, except invest in caller ID (which we also have) and ignore the calls you don't recognise the numbers from
what is this callers preference scheme? how it is available,please?
Thanks:
Edith
-
I am wondering how NASA could help us in that matter.My son is 24 and whenever the telephone rings I have to pick it up as it maybe about him even when he is out with a helper.
That would be my resting time.
however almost every day I receive 1-2 business,marketing research etc phonecallas in spite of the fact that we are out of directory.
I become very anxious when telephone rings as it could mean something bad happened to my son.So it disturbs my very limited resting time as I can not settle down again as fear stresses me up.
Any parents have this problem?
What could we do.
all the best
Edith
-
Dear baddad,please read my reply to Caroline.
Well I am just thinking what would be the more creative,the best for ASD adults.
all the best,
Edith
just to add that my son is 24 lives in the community and we experience lots of lots of problems that I would have never thought.
MY nephew is 30 and works and lives in the "normal" community" with lots of problems and needs continuous help in spite of higly functioning and having A levels.
So I am just searching what would be the best.
Thanks for your answers I really appreciate it.
Edith
-
Sadly, these kinds of 'models' have historically always turned out to be disempowering and isolating rather than enabling and life-enriching. It is far easier to ignore a small island than it is to ignore a percentage of a larger population (and the wider networks they reach as part of that population), and other potential hazards (abuse/patronisation/manipulation/control) also arise as a consequence.Many scandinavian countries had (still have?) 'disabled villages' like these, and it was always a case of warehousing rather than greenhousing. Same applies to British models (there used to be a number of 'CARE' villages in the UK, but they - and the ideology they promoted - seems to have dsappeared now), which effictively, despite the best intentions of all concerned in their establishment, were little more than 'ethical' instituitions.
I think providing all disabled people with sheltered/supported living opportunities should be a huge priority, and I think that 'disablity specific' (i.e. 'autism') environments could/should be part of that, but I don't think they should be isolated communities or that they should provide 'artificial' environments beyond the individual adaptations that a client/service user (whatever the PC term of the moment is!) may need to maximise their independence.
Trying to think of an analogy, the best I can come up with (and it's admittedly a poor one) is an Amish community. The difficulty is that an Amish community has one overriding shared religious ideology to 'unite' them, and the principles of that belief apply to all. Other than a shared dx, an autistic community has no 'collective identity'. That's not to say, of course, that in an Amish (or any other religious or ideologically united) community there won't be little cliques etc, 'cos there will be - but they will be 'secondary' considerations compared to the primary agenda of the collective.
L&P
BD
Dear baddad,
please read my reply to Caroline.
Well I am just thinking what would be the more creative,the best for ASD adults.
all the best,
Edith
-
HiI can see why those type of communities could be appealing – in the outside world people on the spectrum are expected to conform and fit in (and not necessarily be themselves). Also, neurotypical people, particularly those who know little or nothing about ASDs, can be incredibly judgemental. Certainly my ex-neighbours made my life a misery, showing no understanding or compassion for my son. We moved house. My overall opinion is that living in a community like the one you're suggesting isn't necessarily a good thing. To illustrate, my son is in a mainstream school. He has AS and is regarded as being mild (though there's nothing mild about his difficulties, etc!) in contrast to a non-verbal autistic child. I do think there's some value in being with neurotypicals as he wants to be like them and is learning from their behaviour (that can go both ways - learning good and bad behaviours). That's not to say this doesn't have it's difficulties, etc. But, I don't think it's good to lose contact with the outside world.
Caroline.
Dear Caroline,
I really do not think about isolation with outside world.If you want to be self supportive you have to go otside and keep contact continuosly with outside world on everyday basis as all other people in business.
What I mean is to live and work as a group in one place and with freedom naturally provided to go anywhere anytime and wherever yo wish.
To live and work together in my opinion would provide security,selfconfidence ,acceptence and opportunity to create new things and not to take up your energy with struggling with everyday non acceptance.
thanks for answer anyway,
all the best
edith
-
I would like to know your opinions.
If there was a chance would you like to live in a village or farm or area where all the people would be on the ASD spectrum.
The village/farm/ should be self supportive /so everybody would work something according their capabilities and educations/ if they can/ .I have in my mind like kibuczes in Israel or Emmaus in uk.
In Hungary there is something like that unfortunately only till age 21.
In France I also saw self supporting small groups 120-150 people for ex alcoholics and ex drog adicts.
there are all sorts of industries and jobs in these places as they run,manage their own places and produce their own foods , and not to get bored and being multisided they change the jobs /what is changeable/ on a weekly,monthly basis.
obviously married couples live together and others live in sigle or two bedroom rooms.
waiting for your responses.
all the best,
Edith Simon
-
We saw a 3D film today was around £30 pound that was for 2 ticket's, 2 pair's glasses and 2 drink's. Think i will send off for a card.Teresa
-
Dear all,
I am just thinking and thinking and thought maybe better to ask other people that having an autistic child how affects your friendships ,official parties from workplace etc.
Our son is 23 autism+sld and two other sons.
At the time he was diagnosied the "friends" acquantances just slowly but surely started to disappear.
I am just wondering whether it is just our fault ....maybe we are not very sociable or have no time or other people are not really want to get involved with a family like us.
I feel our family very lonely and the other 2 sons too as they have not had the usual opportunities for sleepovers,parties etc as even at younger age schoolmates discoverde that their brother has got problems with speech,behaviour etc.
My husband just lost his job after 25 years with one firm and I just realized that we have no circle of friends or "network" life who would try to help or be interested in us at all.
Can you please write how,parties,going out together with other families where there is no diability or how you have time for friends or how you have common interests with your friends.
Answer,please.
thanks
Edith
-
i thought it was just my son who this happened to!!
i cant remember him ever being invited a birthday party or even to a friends house to play.
No dear Emma,
it has happened to us as well.greg has never been invited to one party also beavers did not accept him.he has very good begavior.
it is sad very sad but unfortunetely it just happens.
best wishes,
edith
-
we recently changed supermarkets, and i've discovered lactose free cheese, cream cheese and milk (actually i knew about the milk aready, but had only had it once) all of them taste like the normal stuff, which is great! i'm happily munching my way through cream cheese sandwiches for lunch each dayLactose free yes but isn`t it kasein that causes the problem??
Please answer
Edith
-
can anyone give me some advice on lactose free foods (cream, milk, yogurt) that don't taste strange.i can't get the hang of soya milk. to me it tastes like someones mixed flour and water together. i will just about tolerate a soya yogurt, but only on a good day. admittedly i've only tried the brand beginning with Al. are there better out there or am i doomed to not being able to eat puddings?
i made fajitas last night and had some soured cream in it (the only way to have them), but the following digestive pyrotechnics have renewed my mission to sort out better alternatives.
You are right it tastes like that.....the only thing that if you use custarrd powder /made without milk/ and you make it yourself in the micro adding sugar and vanilla sugar to it I do not feel the difference that it was made with soya milk.
If you add chocolate or coco powder you have then choclote pudding made with custard powder ,soyamilk,sugar,vanilla sugar + coco.
That is all I can say.
Best Edith
-
Hi there,I read about L-Glutamin and L-Glutathion. They are supposed to help the brain.
Does anyone have experience with them ?
Please tell me if they really work? Which one is better to use?
dana
My son takes L glutamin which is reducing the "leaky gut" syndrome.It has helped or healed him to such extent that maybe he does not have to stay on glutenfreee diet.
It is still early as I try to give him gradually small amount of food containing gluten.
He has been taking for about 4 months and I think 500mg/day.I was also reading in a book that helps some and doesnot help others so we tried as it is a natural foodsupplement and cannot hopefully cause harm.
All the best Edith
-
Cinema Exhibitors` Association Card
www.ceacard.co.uk
if you accompany a person with DLA you pay one and one /who accomponies/ go free.
Very useful card if you go to cinema.Even London IMAX accepts the card.
Go on this website and apply for your son or daughter or friend.
Hope it is useful.
Edith
-
hi 2 years ago my son had a overnight stay on a childrens ward and during his stay he was aware of a distressed baby and when it cried in its distress,he giggled. he does that now to if something serious is happening he giggles and i think its because he does not understand the stress and how he should react,so giggling like some people do at funerals rather than cry is a emotional release ,maybe not what other people are feeling,but its still his way of understanding and not understanding concepts that are confusing and muddled in his mind.Thanks Sesley
best Edith
-
Hi can i ask if any of your children become animals literally, my daughter is 6 and half and for the past couple of months she as started becoming an animal, on way to school, she is either a galloping horse or a bird and flaps her coat sleeves for wings, she also becomes a dog, tiger or a dinosaur. When she is a dog, she goes on all fours obviously we get some looks, she licks things, sniffs things and even cocks her legs up for weeing. We go to a local club on a Friday and i regretted it as soon as we walked in there were a group of men that obviously came for the party that was in the other room, well Melissa became a dog and went mental running on all fours until the men went into the other room and she calmed down so i am now thinking it is her way of coping or letting me know when she is stressed, then later on she was jumping all over a lad of 19yrs old he kept saying he had had enough, but Melissa being Melissa totally ignored him and then sunk her teeth into him and ripped his t shirt
, so i went mad and i asked why she had done it she said she was a tiger and that is what tigers do, i had to pay for the t shirt as it was an expensive one, i took her xmas money �15 and then added to it at first she carried on about me taking the money after a while she said grandad will give me some money in her defiant tone . It can be embarrasing she even tried biting my mums dog, and she bit her little sister, i am at the end of my tether, her behaviour as gotten worse and i think it is since i moved the furniture around, she hasn't been diagnosed but i do suspect she is on the spectrum, she is also struggling at school. Sharon xI fully agree with pookie`s answer so I cannot write sg new.
My son was biting like mad and was actually bitten back /a big one/ and he stopped it at once.Supernanny ideas are good /it is on TV sometimes on the freeview channels/ and be very firm ,stick to what you said.Difficult first could be a few hours screaming but then it is reduced /the time/ and you will see results.
Best wishes,
Edith
<'> -
bjk, let these people know how you have had to rearrange your life to see them!! A friend of mine says, you HAVE to make professionals realise what it is like to be you, to live your life, ( she always gets them listening btw) wish i was like this, getting better though. Keep your chin up girl, and have a drink, xJust to add.
How suprised my son`s consultant was when he told me that "My time is very precious you know" I sai My time is exactly as precious as yours.But there is one big difference you know what ?he says no
I sai you are very well paid while I have to live on the �50/week carers akllowance.He hust wanted to send me to see my GP.It is easy to diagnose parents too if they say their feelings but I think he must.
About his remark to see my GP I sai.You are a bit confused here as I am not your patient but my son is.
Well we left that one behind and waiting for the new one.
The problem is I should have filled in a complain form but had no more energy to do that......
Yes they definitly do not want to know about our family life and how to rearrange for their sake...But if we miss an appointment........
Edith
-
Ive spent the day in tears to be blunt ive fealt like ending it all....................I cant take anymore i realy cant.My son is 15 hes got moderate learning difficulties and aspergers syndrome..............the bulk of his care and all his personal needs are met by myself...........his dad works full time and his sister shoes 17 wishes hed just dissapear................to be honest theres a part of me wishes he would too.
All day long ive walked on eggshells,all day long ive jumped to his tune for fear hed loose it.Hes over six foot tall and im powerelss physically against him.Hes been nasty,insulting hes sat all day in his dressing gown ...............
I cant stand anymore.
No one knows what its like liveing with it day after day after day year after year..............it grinds you down..........theres no end to it.
yes sometimes you fool yourself and think .............its not that bad it could be worse..............and you plod on you get on with it.
I know he cant help it.............i do honestly.............i know hes got all the teenage hormones whizzing round because of his age................and yet i just want to scream.
I feal like letting rip at him letting it all out takeing it all out on him the years and years of care,of wipeing his bottom,of dressing him,of constantly haveing to make all my decisions based upon his needs and yet haveing lets be utterly honest here nothing in return.
He looked at me and it was like he didnt see me.............as i sat there in tears sobbing away it doesnt register............i guess it never will never has.
Yes im haveing a bad day.........hes been off school for over a week and today was an extra day off.............its dragged me down.He hates to leave the house and although he can be left for short periods you cant relax ..............you can never relax.............
I guess ill dust myself off carry on and pretend all is fine.
I guess you cant let the inner fealing surface not even a tiny bit coz when they do the floodgates open.
How ive not screamed and yelled at him today ill never know.............
Im his mum i love him.................i wish he were normal.
How many of us has felt the same way.especially after a halfterm with the "teachers training on top as a bonus for us.
Any help maybe from social services??They should give you sg like a few hours total break when you can sleep or go for a walk etc.
I would not be able to cope without the carers who come to our house and stay with my son or take him out for a few hours.
Soc sevice should give you a break!!!
It is difficult to get help but if you try and try it might bring some releif for you.
I am just sending you my big hugs and tpotal sympathy.
best wishes
Edith
<'> <'> <'> -
Said the consultant 2 weeks agoThankyou I replied, youve really cheared me up!
I didn't really I just said "oh" went a bit quiet and took his Melatonin Prescription and for an added bonus Concerta prescription and said thank you!
Sorry, just wanted to write it down - I feel quite sad. Her voice saying those words keep coming into my head. I was hopeful that he would grow out of it or eventually learn to stop some of the things he does through being consitant but now she has said that I haven't got the "If we try this he may just........................" to cling onto anymore.
Trouble is, he's fine in many ways so I thought she was being a bit harsh really. His freinds think he's great there are just some little quirks and foibles which we handle but a lot of them are quite endearing and some are hard to manage. Perhaps I have a family with a lot of quirks and foibles and most people would find them odd but I think they are fairly normal. We/they are just very individual in their thinking shall we say!
Dear Sooze2,
It is awful what he or she said and it is not true!!!!!!
I have received that kind of response from proffessional all the way /my son is 23/ since early childhood.If I had beleiveved them........No I did not believe and look at my son he is in his flat although with help,he is very helpful with cooking,shopping,gardening ,cleaning etc.
He has asd and severe learning difficulties but have a quality of life.
A lots of my aquantances with asd have listened to these ackward people and the kids were given up and they are in different "live in" homes and stayed where they were as the parents listened to professionals and lost faith.
So please do not!!!!!!!!!!!
My greatest enemeies have been all the time the professionals and they are still.Just had a big row with a consultanta and we are going to change him.Hopefully the next one will be better.
My attitude has become towards them actually I have a T shirt for these occasion on which it is written:"if you cannot help at least do not cause any harm,please.Thank you"
Not that I had the courage to wear it,.........but now I shake them of if they are not helpful.
On the way there were a few helpful too.maybe one out of ten........
Wish you a lots of strengh and wisdom hoew toget what you want from these proffessinals and forget them what they say as soon as you can.
Best wishes,
Edith
-
Dear All,
I am back again as I really need your tips and advice on the topic of repetition.My son 23 ASD + severe learning difficulties but communicates in 4-5 word sentences.
He is reapeating the same topic /I do not know how many times!! - I have no strengh or courage to count!/ .
eg.In summer we will go on holiday. You cannot go to the Skoda garage because they can call the police.or I am not getting old.......
or It is not very expensive /nowdays credit crunch etc/ and If I stop him he does not chandge the topic but might cry if I send him upstairs after explaining the same topic PAAATTIIOOONTTTLYYYY 7 times minimum and I have no more strengh but then he starts the next repetitive topic.
Interestingly enough if I take him to London or to the seaside then there is no repetion.So when he is well entertained he does not repaet but I have no eneregy to keep him busy 16 hours a day.
Any tips??Any strategies???
Thanks a lot for help.
Best wishes
Edith
-
Yeah I would definately agree with that. One day after a particularly unpleasant incident at schoopl I burst into tears , saying to my son "why do you do these things - can't you see how much it upsets people" (obviously this was before we knew he had ASD). In response he too seemed to start crying and I took this to be remorse, but then within a few seconds, his crying turned to hysterical laughter. It seemed very strange at the time, but now I recognise it as a kind of 'crossed wire' in his emotional make-up.Also I think we sometimes assume that they are laughing at others' discomfort when they're not -eg. the other day I stubbed my toe which brought tears to my eyes and made me hop up and down on the spot. My son started laughing hysterically, and when I said that it was rude to laugh at people because they've hurt themself he said, "I'm not laughing because you've hurt yourself: I'm laughing because you're jumping up and down like they did in the old days!".(By this we worked out that he meant like an old silent comedy! Its just that the sight of me jumping up and down like a loony figured more strongly on his perceptual radar than the fact that I was in pain (if that makes sense) After I told him I was in pain he came and gave me a big kiss!
Thanks a lot.
Certainly I have got a different "attitude" towards my son`s laughing and I also made aware friends,careres etc in order not to think it is badwill.
Thanks to you all.
Have a nice day everybody
Best wishes,
Edith
IT HAS BEEN A VERY GREAT HELP ALL THAT HAVE ANSWERED THIS TOPIC SO FAR!!!!!!
THANKS!!!!!
Disability Living Allowance reform – public consultation (link)
in General Discussion
Posted · Report reply
This is really unfair.
this is really disregarding a person`s disability.Disability is disability.This term is not understood by lots of people in the society but if it is going to be "personal living" or something then everybody will think that they have got no problems at all,and they do not deserve at all a penny.
Nobody knows at the moment about the extrem stressful life of disabled people,confusion,stress that often leads to financial loss too.
personal items are lost regulary and needs to be repleced.
We often need a taxi as the disabled person just cannot cope in the middle of a shopping or in the surgery.
the list is endless .wallpaper is stripped,or carpet is damaged etc.
The stress and humiliation of the disabled person and their relatives when being "assessed" /I would call interogation/ and how to make notes of each item where money is spent.
who and how will we cope with that kind of more paperwork????????
Yes and the media .......why they do not deal ,address this topic....I wonder.....
Best for the next year for everybody.
Edith