edith simon

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

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

Sorry I was on antidepressant and I am a parent. i did not understand it well. edith

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

That is a very good idea only I have to give all helpers a mobile . I think i will try. thanks a lot Edith

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

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

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

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

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

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

Lactose free yes but isn`t it kasein that causes the problem?? Please answer Edith

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

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

Thanks Sesley best Edith

I 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 <'>

Just 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

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 <'> <'> <'>

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

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!!!!!