BuntyB

Oh dear, off-load time. Lucy has been told to go in non-uniform today. Do other parents have this problem? Most children love it, she hates it. mostly she has gone in uniform anyway, but today she was too worried she would 'get in trouble', so went in her 'Saturday stuff', but it certainly set her off on the wrong foot. She also had a presentation to do. 2 minutes on China. She had me help her make fortune cookies last night. Help! But then she got mad because they weren't perfect and stormed off to her room, leaving me and her sisters to finish the job. This morning she refused to get out of bed. I was anticpating this, and i was tough on her. I told her if she didn't get up, her sisters would also be late for school. We're due to go on our holidays tomorrow, but i threatened we'd all stay at home and practice getting up in the morning, so she did eventually go. She cried all the way that she wasn't organised, but she does have tick charts to help her, it's just she gets up so late she doesn't use them. And night time is impossible, she just says 'go away' if you try to help her. I sympathise so much with the anxiety thing, but don't want her to learn that staying in bed is an answer. I asked her to go and speak to her supporting teacher about the difficulty with the presentation as I think it's really important she learns how to ask for help. She yelled at me and asked why I am so mean to her. I got her out the car and drove off (round the block to make sure she went inside) It was awful, I know it's hard for her. I cried all the way home.

They get on with what they need to do, with difficulty. An informal carer is one who does it for love, not money. The label might, alledgedly, bring recognition, but largely it doesn't. You care for your family whether they have a disability or not, hence why a lot of people don't see themselves as 'carers'. And no, there isn't a lot of support. As long as you do it, nobody is interested!

Hi, I'm sorry to hear you are going through all this stress. I used to work in mental health and it was not uncommon for people to be judged capable of work even though health professionals said otherwise. Firstly, let me say it's a few years since I have done this so I cannot vouch if the system is exactly the same, but the first thing you need to do is lodge an appeal. It used to be you could claim 80% of your benefits if you didn't want to sign on while an appeal is in progress, so check if this is still the case. To make a case for incapacity you need to request your papers. There is a 'point' system which doesn't relate well to mental health or AS (did you get a form to fill in asking you if you can walk, stand, pick things up etc?) This is why even if health professionals say you can't work, they won't be interested. You get different points for 'mental health' which includes anxiety, depression and inability to cope, but if it 'mental health' isn't flagged up, which it probably won't, you won't get any points for that. I thoroughly recommend that you speak to either a CAB, welfare rights, or disability centre and ask if someone will represent you. Arrange to meet and take all your paperwork, as they will need to see your points to be able to make a case. Different centres work in different ways, but i did home visits for those too anxious to come to the centre and could accompany people to tribunal if necessary. If you have middle rate DLA or above, this would also help your case. If you are not likely to succeed, they will tell you, it will save a lot of stress. Phone your Jobcentre and ask to speak to the person who deals with disabilities and explain the problem. What do you do in the daytime? You can obviously use a computer. Would you be able to do a bit of work from home, data entry for example? You would be surprised how much you can gain financially if you are able to do 16 hours. Your welfare rep would be able to calculate it for you. Many of my clients were gobsmacked at how much tax credit they got on top of their earnings if they claimed DLA and were able to do some form of work from home. Good luck, I hope you get sorted!

Hi, I saw a documentary made by a 14 year old boy with AS which explains what his life is like, on channel 4 and regretted that I didn't realise it was on and taped it. Aplogies if this is old hat to everyone, but i discovered that Channel 4 on Demand allows you to download anything that's been on tele in the past 30 days. I have downloaded a copy to show to my daughters and they found it very good. If anyone is interested, the series is called 'My crazy life' and it is episode 2. You need Media player 10 or above to view it. Shona x

Hi all, We know in our house what causes meltdowns- lost things! School have tried to be really helpful by providing a checklist for my daughters as they often leave stuff at home (nice, but it's not like I haven't tried all this before) and I get little mesages saying can I help them put their things together? It isn't quite so simple though. They don't allow me in their room to find things, and trying to insist I help them put things in bags causes a meltdown all of it's own. On a night time they always insist they've already done all the prep, but this is soon forgotten in the morning when something is missing. Often the books never make it home. Has anyone got any other suggestions to help (apart from sending their sleeping bags to school!)

Hi, I got a mattress and bedding for my son, but because he was a bedwetter. Is the problem wear and tear or anything to do with his difficulties eg, does he break it and do you need something stronger? if you're on a low income, have you looked at Community care grants (income support). I've had a lot of success with 'freecycle'. Lots of people have stuff they don't want anymore and are happy to pass on for free. Shona x

Hi all, Just off-loading since I expect a lot of you will understand how I feel. Two of my daughters were stressing all yesterday evening over their homework. I stayed calm throughout trying to interpret instructions, trying to build their confidence, but in the end it never got done. That's a sign today would be bad since I knew they wouldn't want to go to school. I got up extra early but all the coaxing, bribes, threats and after resorting to shouting, my son who normally gets off to school just fine, broke down in tears telling me he thinks he's mental. He's describing self-harming, aggressive thoughts, talking to himself, and hearing voices. I told him not to worry, lots of people have problems with emotional thoughts at his age (15) but inside I am stunned by what he's told me. For the past couple of years he seemed to be doing well, but he says it's gone on for years. instead of reassurring him until we can talk further, he thinks I am belittling what he is feeling. I've been offered a job starting in a couple of weeks and thought things were looking up, now I wonder if I'll ever be able to with all these problems going on. My youngest was late for school and the others never got out of bed. I just feel like giving up.

Thanks for the link showing a summary of what the programme's about, but not sure how this helps- did I miss something?

Hi all, I came in this morning and by chance caught the end of a channel 4 programme about a 14 year old boy called Reuben who has AS. He made the film himself and I thought what I saw was excellent. It's part of a series I think was called 'My crazy life' I would have liked to have taped it for my son to see if I'd known it was on. I wonder if anybody else saw it, taped it, or know when it might be repeated.

Hi Paula, I've had a look at the website but can't find the pj's. Did you seem them on there and have you got a link? Shona

Hi all, I desperately need to get new clothes for Lucy, but it's really difficult! She won't pick out clothes or go into town, so I have to bring things from shops that allow you to take them back. Everything has to be plain and brown, green or blue. I used to get away with buying boys clothes but at nearly 12 she's very concious of having girls clothes, but they musn't look girlie! New look have just started doing organic cotton stuff in plain colours so hoped she might like them, but they don't have them on their website so I can show her. If I bring clothes she never wants to try them on, and keeps saying she'll do it soon. I generally find them stuffed in a corner several months later, still unworn! I bought her new school uniform for the start of term and had to smile to myself that she is wearing her sister's old jumper with very chewed and frayed sleeves instead. I can't find winter pyjamas- anyone know where I can get some that don't have pink, flowers or cute pictures on? Anyone had any success with getting new clothes (I won't even start on school shoes!!!)

I am sorry to hear that you aren't getting the help and support you need. Who is this sw? Can you speak to a manager, because even though they are there for your child's protection, you are entitled to a carers assessment and if you are not coping with the situation, they need to intervene. Do try to speak to someone while the situation is calm so you are prepared if things get out of hand again. <'> <'> <'>

Hi, My daughter has just gone into year 7 and I've been really impressed with the way she has handled all the changes, but homework causes a major problem. Firstly she isn't always sure what she's supposed to be doing. Tonight she has been told that she is to draw an object with cross hatching. She hit a stumbling block because she hadn't heard the term before. I have explained, printed off examples and produced a book with a demonstration, but this doesn't help. she just flies into a rage asking how she is supposed to do something she hasn't heard of. Eventually she watched me draw an egg, but then said her teacher would expect more than that and put 5 eggs in a bowl. She tried to draw the basic shapes and got cross with that since it wasn't quite right. I tried to get her to practice the shading, as the 'eggs' might be something else round, eg oranges. I might have guessed this wouldn't do. She has now spent an hour sreaming and bawling that she is going to get a sanction because she hasn't completed it. She doesn't understand the concept of 'trying your best' being good enough. She thinks it has to be perfect. It's so hard to help her as she is convinced she is 'rubbish at everything' and 'everyone else is perfect'. The school are very good with her but because she is in a very small mainstream private school on a tight budget, they have said they would only accept her if she could cope with the level of support they can give her. the last thing i want is for them to say they can't cope with her needs since she's generally been much, much happier at this school. Has anyone had any success with helping in this type of situation?

Hi, You can't be discriminated against because you have a disability. If you want the children with you, they shouldn't be removed. Do you get DLA yourself? Have you considered having a carer for you? Ask about Direct Payments and see whether you could employ someone to help you. You should't have to put up with this. There are lots of parents with disabilities bringing up children. See if you can find some support groups that deal specifically with this and also see CAB about getting some benefit in your own right. Are you connected to a church? Try and rally round as much support apart from your husband. He might have AS, but you don't have to put up with being treated so badly. If you are frightened of him, see if there is support from a domestic volence group or a refuge you can go to together. lots of people would help you, you just need to make sure that they know you need the support.

Hi, We've had a number of difficulties with Lucy lately but she seems to be settling back into school. While she was out we decided to decorate the kitchen. We painted it a soft green, green being her favourite colour we thought she'd be okay about it. My eldest came in and said it was 'quality', the second said it was 'cool' and when Lucy came in she stood for a while looking at it. We asked her what she thought of it, and she walked over to the wall, stuck her nose right up next to it ,drew in a deep breath to smell it and then announced, Yes, it's great!' Made me smile!

Have you tried dunkers? My son always ate them.

I think at the same time, we can all appreciate that parents need to offload their own frustrations. Perhaps I can get an insight into what I came on here to offload. L loves the Sims, but her computer had the wrong drive. I bought her it (expensive!), hoping she'd be happy but next thing there's this constant screaming. What's the matter? It doesn't work What doesn't work? The computer. It never works. Would you like me to look? No. I didn't want to play the game anyway. I'm too hot. Why don't you wear your T-shirt instead of your jumper? (has two fave t-shirts) No Why not? I can't wear them. Why not? I've worn them too many days. Do they need washing? No. I just can't wear them. Anyway I'm thirsty. Shall I get you a drink? No. Go away I expect it all makes sense from her side, but when you are a loving parent and you want your child to be happy and comfortable, it is really frustrating!

Hi, My daughter is 13 now and always ate with her fingers, and just as you describe, preferring 'the lollipop', nibbling off the end of her fork. She also disects cakes and sandwiches, tearing them into little pieces before putting them in her mouth. If we had company, I had to have pizza or chicken dippers and chips. She likes ketchup and chocolate spread, unfortuntely! To give you some hope, she has improved considerably over the past couple of years. We progressed from fast food places to italian restaurants and chinese too. She like to eat out so has to try. She still holds her cutlery in the opposite hands to you expect and looks very awkward, especially when cutting stuff. She holds the food still with the knife and tries to pull it apart by dragging her fork in the opposite direction, frequently resorting to 'the lollipop' when it doesn't work, but she's much less embarrasing than she used to be!

Lol Gail, My L will only eat soup a lot of the time. Her favourite is chinese chicken and sweetcorn- until a fly fell in it! <'> <'>

Hi, Like many of you school hols have been just as bad as trying to get L to school! L has been like a recluse since the beginning of the holidays refusing to go anywhere or do anything, at the same time she flops about complainig how bored she is. On a few occassions with coaxing, bribing, threats and tempers frayed we have managed to get her out with us. Whilst out she laughs and jokes but suggest she' having a good time and she goes into a rage. For the past couple of weeks L has been sleeping on the floor in her sister's room because she say's there are spiders in hers. Hubby offers to remove them but they 'disappear' when he's there only to reappear one he's gone. Food has been an obsession, now it's dirt. Okay, the house isn't great. but she's spent this lunchtime firstly screaming and bawling at a fly, then throwing up because her spoon had 'something dirty on it.' A lot of the time I think she's depressed. Her sisters meet friends and she just flops about. Sometimes her behaviour is dsturbing, but we've had no input since her diagnosis 3 years ago. How do you decide whether this is just what to expect or whether to involve professional help?

Hi, I was hoping now we don't have the problem of getting L to school, things would be better. However, unless I let her play sims on my pc constantly (which I can't always do due to work) she just howls continually in her bedroom. I've bought her her own pc, but it just isn't right, cos it's not like mine and it makes too many wires in her room. I just feel there's no pleasing her. We've tried repeatedly to get her outside without success. I think she's turning into a recluse. She looks very tired and pale and her brother and sisters are fed up with her screaming 'go away' at them every time they try to include her. Any suggestions?

I'm really sorry to hear what you are going through. I've had my kids kick off when they don't want to go to school and it's awful, but their problems are not as bad as yours. From what you've said, your son's perceptions of school, are pretty apalling. I wouldn't want to co-operate with anyone who 'banged my head' or kept me in a confined space, restrained me, or tried to make me eat something I didn't want to either! Are there any alternatives if this isn't the right environment for him? I'm lucky that one of mine has improved greatly since going to an independent school. It's a very small and mainstream Christian school. It costs us all her DLA but well worth it as she largely enjoys going there and she's treated like everyone else.

many thanks for the reply about help in exams, but this is with written work. Is any allowance made so they don't have to stand up in front of an audience to speak if they have communication problems?

Hi, I wonder if those with experience of kids with a diagnosis can let me know what sort of help they are getting at mainstream school? Here's the situation: T's younger sister is diagnosed with AS. I suspect T is the same and from what I have read have recognised traits too long to mention, but you know the stuff. Anyway, took T over a year ago to be assessed. From my comments, consultant psych said it was likely, but on the school's report changed their minds. Personally I think T does a good job of acting 'normal' to fit in but comes under a lot of stress doing so. I think I have a reputation as an over-fussy mum! the girls now go to an independent school and are making good progress, but T has been at this school 3 years and thinks he'd rather stay put. However, I do get concerned when he gets detentions for not reading in front of the class, and other social nightmares which he frets himself silly over. I hear tomorrow he has to do a presentation as part of his GCSE English coursework. He's a very bright lad and there's no doubt he has the ability (Graded as a 7) but he says he'd rather fail than have to do it. School say there's nothing they can do, but I wonder if he had got the diagnosis whether they would make any allowances? Is it worth kicking up a fuss?

Believe me I have tried the lot! I gave them a flow chart for each item to pick up asking is it: clothes? yes? dirty- in the basket, clean in the drawer etc. They loved it for about ten minutes then gave up. I've tried to make it simple- Cati has a midi bed with storage boxes under. I've told them anything but clothes can go under there. I don't care which boxes they go in because if they're mixed up it only inconveniences them and not me, but I do want their clothes in the drawer and not on the floor so I can get them to school in time. There really isn't space to put the drawers elsewhere since there is only two rooms downstairs and 7 of us. The music thing is a non-starter. Cati dances instead of working and Lucy has an aversion to her music and yells at her to switch it off! Tonight their little neice fell over some stuff and cut her head. Cati was hysterical and I told her this is why stuff shouldn't be on the floor. She's also been on crutches herself after falling, but she doesn't seem to learn. Every morning something is lost. I've just found out that her new PE kit is lost. That's two sets in 3 weeks. I despair!