lorryw

Hi Lil me, I receive direct payment for my sons care. I think they are quite happy to encourage as many people as they can to use it. The ball is then in your court and you have to find your own carer and therefore they dont have to supply services. You will need to have an initial Carers Assessment, if you input that into our search thingy (oh what a technical wizard I am) you will find loads of useful info. Dont worry about the house, my friend who works along side SS has a theory that if I had answered the door in my dressing gown with a bottle of vodka tucked under my arm I would have been given far more support. Good luck and ring them tomorrow to start the ball rolling. It will take forever so start sooner than later. Take care, Loraine

Hi Sharon Dont apply for reconsideration, its a waste of time, very few decisions get overturned Apply for an appeal and in the meantime contact Welfare Rights or your local CAB. I suggest you take alook at this site, www.yourable.com and visit the forum section. Lots of good advice about appeals etc. I went to appeal several years ago and won, a bit daunting at the time but the appeal panel were brilliant. I would do it again without hesitation, so go for it girl!! Let us know how you get on. Loraine

Where do these people come from? I once had the misfortune to have a meeting with my sons former head teacher and an educational psycologist. They were obviously mates, talked about golf etc before getting down to business. School was having probs with sons temper tantrums and didnt believe it wasnt happening at home (it is now!) The suggestion was that if he felt slightly cross he gave the teacher an amber card and if he felt very angry a red card which would enable hime to leave the room. The fact that my son would have absolutely no idea what the wretched cards were for and what they represented completely passed this guy.When I pointed this out he was shocked and gave me a huge speech about how he had worked with autistic children for years bla bla. When I stood my ground and asked where he had worked with these oh so lucky children he became flustered and muttered something about all over the country. Im afraid any faith I had in him had flown out the door when I mentioned a friend whose little lad couldnt bear the windows open, even on the hottest of days and did he have any ideas?. His suggestion..air conditioning... followed by a knowing wink and snort of laughter. Complete idiot!!! Loraine

Hi Suze Try to have a great holiday. I hate all the preparation, so much to remember and keeping everyone happy is a nightmare. Relax and try to have a good time. Love Loraine

Hi Lisa I hate to be deeply cynical but I do sometimes wonder wether these specialists (I use the term loosely!) simply invent titles of conditions. I sometimes imagine them sitting in a room taking bets as to who can get away with the daftest most meaningless condition, I think your guy definately won this week. I am so pleased your lad had a great holiday and enjoyed himself on his terms. Loraine xx

Hello Bid, Gosh that is a tall order. This will sound like a real old cliche but I think the only way is to live each day as it comes. My son will be 20 next week and looking back I think I have been through the whole range of emotions. I have a lovely husband and great friends and they have been a wonderful help. Over the years I have coped and dealt with my son without any help from so called experts because to be quite honest I dont think they exist. My son has been termed profoundly autistic and yes I do get pangs when I watch my sisters kids leading normal lives which my son will never do. We have just got on with things and tried to find our own solutions to problems as they have cropped up. Sometimes it takes someone elses problems to help you take stock. A very good freinds husband died out of the blue last week, he was only 47 and we are all totally shocked. Our problems seem tiny in comparison. It does get easier and its good to know you are not alone, just try and go with the flow and dont be too hard on yourself. I hope this doesnt sound patronising and I completely understand how you are feeling. Take care, Loraine

Ive also joined the group and they seem to be a group of very caring and kind people. Loraine

I totally agree with you ladies. If Eugene is capable of getting onto a national television programme and surviving then good luck to him. I dont watch Big Brother but Im a little uncomfortable with diagnosis via the television.

So pleased to hear you are ok. I can tell my husband the good news. He keeps asking if my internet friend is ok.... Loraine xx

Viper you are in my thoughts. As soon as I heard the news about the disruption in London I thought of you and your appointment. Please let us know you are all ok. Loraine

Good luck Viper, let us know how it goes. Love Loraine

Ive just discovered that motability will pay a grant towards driving lessons. We use my sons motability allowance to lease a car and it is under my name. However, I dont drive, husband does. Sometimes I worry that if for any reason husband could no longer drive we would be completely stuck. To be honest though Im a complete woose and the thought of driving is pretty scarey. I was looking forward to the days of self driving cars (as seen on Tomorrows World may moons ago) where you just programme in where you want to go and off you go!! Anyway just thought Id let anyone else with a mobility vehicle know about the lesson grant scheme. Loraine

Thanks guys. Nellie, I will phych myself up to contact Princess Trust. Witsend, thanks for the hug, you cheered me up!!! Love Loraine xx

Sorry to prattle on about the dreaded SS but here goes.... My son has been accessing services for a few months now. A meeting was held last week to discuss how things were going. All other meetings have been held at my home but this was to be held across town at 10 in the morning. Because of problems getting a carer transport etc I couldnt go. Much to my amazement the meeting went ahead without me. Almost a week later I had heard nothing about the outcome despite phone calls and email. Today I recieved a telephone call with the gist of meeting. Son is doing well bla blah. He has a rebound session (lasting all of 40 minutes) and a swimming session for just under 2 hours. I pointed out that I was worried my son was being socially excluded and she wittered on about extra direct payments (glorified baby sitting) but reading between the lines day care services have decided it is too difficult to care for my lad...end of story. I feel so powerless, I contacted the NAS who suggested I contact a solicitor with disability rights knowledge. I really dont have the energy for that, I am currently dealing with DLA, council tax etc etc Its as though he has stepped off of a space craft, except Im sure if he had we would be killed in the rush to help him!!!! Any ideas gratefully received. cheers (she says miserably)Loraine

What a sad bunch we all are!!!! Love Loraine

Ooohh! Baddad, dont do things like that. I went cold went I read your reply. I spent a few seconds wondering where I would get the money/explaining to aghast husband and possible plans for fleeing the country hotly pursued by BT. Still wont log out though,too scared I wont get back in. Loraine

Roy meadows has been struck off by the GMC

Have a lovely holiday Annie. We took our 19 year old to Florida in feb. I was dreading it but we had a good time despite a few meltdowns. Its good for you and good for him (I sound uncannily like a Two Ronnie sketch!) I watch the video of our holiday and we all look so happy and relaxed it looks like a different family. Bon Voyage Loraine

Hi Mandy If you put smearing in the search engine at the top of this page it will give you a list of previous threads dealing with the subject. Have you thought of removing your daughters door we had the same probs with our son constantly opening and slamming his door and we took the door off. It worked a treat by not letting him know his door was missing until bedtime and distracting him with a new toy to take up to bed. Good luck Loraine

Hi Bid Well done on the award. When did you apply and why did they ring you rather than simply put it in writing? We reapplied at the end of April for my son and havent heard, his current award runs out at the end of the month. I rang to ask how it was progressing and they refused to tell me. It serves me right, the forms arrived in Feb but I just couldnt face filling them in. Ho hum you live and learn. Loraine

Thinking about having a bath and looking forward to watching a dvd later on with a glass of wine (hoping I dont fall asleep before the end) Loraine

Hi, Kaiser Chiefs, love them at the moment. Great lyrics and loud music, great!! Loraine

Hi Emum Sorry havent any answers but just wanted to say hello. Just a thought. Does she have any books of her own? Perhaps you could buy her some books from a charity shop to deflect her from her brothers. Its not an answer only a compromise and youve probably already tried it but worth a try. Loraine

Hi Nic I remember going through the same thing with my son. He suddenly stopped walking at about 4 and would only crawl. We took him to A and E who could find nothing wrong physically. After a couple of weeks he stopped and started walking again, still no idea what it was all about. Just as an aside I fell over when I was 3 and cut my knees. I was cleaned up etc but the following morning I woke and refused to walk. My poor parents had to carry me or I moved in a squatting position. Mum and Dad took me to an assortment of doctors but they coulsd find nothing wrong. This went on for about 6 weeks and eventually they were at breaking point. One day in the park my Dad was in a hurry to get home and I was doing my usual monkey walk. Dad started to speed up and must have dropped my hand. The thought of losing my Dad in the park alarmed me so much that I got to my feet and ran after him, shouting Daddy Daddy I can walk!! Im sure your lad will be back on his feet soon Love Loraine

Hi Denise Glad to see you back. I know what you mean about being autismed out. I never watch any TV programmes or read any of the books anymore. My son was diagnosed 12 years ago and I was always in the library/ Smiths/Waterstones etc. I was looking for the answer and it eventually dawned on me that I wouldnt find a perfect solution to our problems. I now live for the day. The books I read were either all doom and gloom or dippy, feed your child carrots, beetroot only on a Tuesday, type stuff. I now take it all with a huge pinch of salt and realise that these books are written with the aim of making money (Ive yet to see one issued free) and read this site to pick up useful real life tips. Having said all that I am sure there are some people may find them very useful but each to his own. Take care Loraine