loulou

Hi, Ikea do home delivery on some of their products. We have a bed by Flexa, which is very sturdy. It has had my son (who weighs at least 12 stone) throwing himself on it regularly and i can't believe it hasn't broken. It has lasted for 11 years and is still going strong. They are pretty pricey, but i have managed to buy 2 more of them on e-bay for about £30 each for my younger children. Loulou x

Hi, Yes i am on medication. I had weaned myself off it earlier this year when things were stable, but have been slowly slipping back down again ever since. I've been on anti-depressants on and off for the last 8 years due to the difficulties with my son. I have been unable to work for nearly 2 years now too. You are so right about just struggling on. I have done it so many times but somehow managed to continue as us parents do. Now i'm at a stage where i can't physically or emotionally meet my son's needs anymore. Not because of my depression, but because he is too complex for one person alone to cope with. He needs professional help. I'll be making more calls tomorrow. Loulou x

Thanks Sally44, I was thinking about hospital too. There is an adolescent inpatient provision in our county and i've also found a Priory one that sounds really good. I think the referral has to come from CAMHS, so hopefully we'll get our appointment moved forward. I have also felt like dropping my son off with SS or CAMHS before too. On really bad days it takes every ounce of my strength to keep going. I have been doing this for the past 10 years or so though, and now i'm really struggling. Loulou xx

Hi, Thank you for your reply. You have summed it up exactly. I've been trying to get through to IPSEA but the line is always busy. I'll keep trying. His school have said they can't physically force him to go back, so that's not an option (i so wish it was). I have told my son that any alternative might be worse and all he can say is "oh well". He really hasn't taken any of this on board. He has been at his school for 3 years. His behaviour has been very up and down over this time. Sometimes he is fine and gets on with his work and joins in with the others. Other times he completely withdraws or becomes very disruptive, abusive, destructive and violent (to staff). I have to seriously consider what is best for the whole family. It's very difficult, as i feel so sorry for him. I can't carry on like this much longer though. We have a CAMHS appointment, but not for another month. Hopefully the ed psych will be able to pull some strings and get it brought forward. I dread to think what sort of state he will be in if another month goes by. On a positive note, he did have a shower today and even let me wash his hair (a miracle!). Then he came to pick up my little one from school. This is the first time he has got dressed and left the house for over a month. It was lovely. Loulou x

Hi Sally, Thanks for your reply, it's really helpful. My son has not been is mainstream since he was 5. He didn't cope at all and was at home with me for 18 months, then he went to an EBD school from the age of 7 to 10. I had to fight to get him out of the EBD school and to a specialist residential AS school as he was so stressed with the disruptive behaviour and wasn't coping with the transition from school to home. This is why i find it so ridiculous for the LEA to think he is suddenly going to cope with going to this PRU and back home again everyday. Also, he is unmanageable most of the time at home, so i really don't see it working. My poor 5 year old has suffered from the constant emotional abuse my 14 year old has inflicted on him. Not to mention my deteriorating mental health (i'm doing all of this on my own). Two care staff from his school came today and talked to him for 1 1/2 hours. They got nowhere, he is adamant he is not going back. I have decided to get some legal advice, as i think the LEA are going to be extremely difficult about this. I'm sure they have decided that he will go to the PRU. I have even asked for S Services to make an assessment with the regards to the risk he poses to my little ones. I'm still undecided about visiting the PRU. I know i should be seen to be working with them, but on the other hand, if i visit, it's like saying my son doesn't need residential care anymore. I just feel so awful :crying: Loulou x

Hi, Thanks for your replies . I'm just finding this whole thing so confusing. I really don't know what's best for him. Justine1, the boys at his current school are all high functioning, but my son will pick out any "odd" behaviours that they display. He does say he can't stand being in class when they're all kicking off (although he does it too sometimes). I really think he is struggling to accept he has AS and he doesn't want to talk about it either. Hopefully we'll get a CAMHS appointment soon and he can get some medication. Staying in his room 24/7 is not helping him at all. I have found another AS residential school (even further than away than his current one though), but the LEA wouldn't even discuss it at the meeting. They just kept plugging the PRU, which is what made me very suspicious about their motives. I have just told him that 2 care workers from his school are coming to visit him tomorrow and pick up his school work (of which he hasn't done any!). This is their last attempt to try and see if they can get him to go back. Fingers crossed, Loulou.

Hi, His special school really want him back, but they can't force him so we are stuck. The Head is sending a couple of care workers to our house any day now, as a last attempt to get him to go back (they are 2 workers who he really likes, so they're just coming to "visit" him, not to put any pressure on him). He has been on Concerta for his ADHD since he was 6, but he stopped taking it back in May. To be honest, his ADHD has calmed down quite a bit and he seems to manage without the meds. The school Psych wanted to put him on anti-depressants for his anxiety back in July, but he wouldn't agree to it as he thought it was a conspiracy to make him like the school and want to be there . He seems to have a big problem with some of the other boy's "oddities" and he gets fixated on their strange behaviours, saying they are "weird" and "retarded". I think he is struggling to accept his diagnosis and he says "You may as well kill yourself when you get diagnosed with autism" . It's just so sad seeing him like this. The therapy team (at his school) have been trying to work with him on this, but they are having trouble engaging him. We are currently waiting for a local CAMHS appointment. I just feel so distrustful of the LA, as i know they are trying to get all of the "out of county" children back, to save money. Loulou x

Hi Kazzen, Good questions, thank you. The school he is at is AS specific. The LA told me that the PRU has 60 to 70% of pupils with ASDs, but didn't mention staff training. Apparently they try to engage the kids in learning through their interests. Apart from xbox, my son has none! Being at the PRU will not help with the problems at home and if he doesn't like it there, he'll just refuse to go. It sounds to me that the PRU is just a dumping ground and a way for the LA to save money. I'm so stressed about this! Loulou x

Hi everyone, I have been a member on this forum for many years, but don't post often as i never get time. My household is so busy! I would really appreciate some advice at the moment. My son is now 14 (he has AS/ADHD). He's been in a residential school for 3 years now. It's been a bit of a rollercoaster (to say the least). He goes through periods of doing well and getting on ok, but other times he's non-compliant, aggressive and refuses to do any work. We've been having problems getting him back to school following weekends home and holidays for some time now. He's been out of lessons since May and has been doing school work in his house-base. However, he has refused to go back to school this term and is at home with me and my 2 little ones. He is clearly depressed and spends nearly all day (and night) on his xbox. It is extremely difficult to get him out of his room, and when he does come out, he torments my 5 year old (to the extent my 5 year old is now significantly suffering at school and home). We have had a multi-agency meeting today, and the LEA are proposing a PRU (pupil referral unit). Apparently they specialise in ASDs. I have HUGE reservations about allowing this, mainly as i feel it's just a "cop out" on their part, ie just putting him there as they don't know what else to do with him. He is very high functioning, but his anxiety and social difficulties really hamper his learning. I don't think a lot of academic learning goes on at the PRU. Also, it means he will be home every day and weekend. I am struggling with his behaviour at the moment, so i can't see how this option is going to help. The other reservation i have, is if I allow him to go to the PRU, his out of County placement will be withdrawn. It was a massive battle getting him a place there in the first place. It would be admitting that he doesn't need the 24 hour curriculum residential schools provide. If the PRU doesn't work out, we'll be back to square one. My head is in such a scramble, i really don't know what to do. I would really appreciate other's views on this please. Loulou.

Thanks everyone, i will try sibs. My little one's school are going to make a referral to CAMHS, although i'm not very optimisic as the waiting list is about 2 years! His teacher said he's a very "needy" little boy. When i told her what he endures from his AS brother she cried. Hopefully she now has a better understanding of him and that he's not just naughty. I feel so sorry for him, he's such a little sweetie. Loulou xx

Hi, I haven't been on the forum for a while, so hello to everyone again! My AS/ADHD son is now 13 and has started being very verbally and sometimes physically aggressive to his 5 year old brother. He has done this in the past, and it stopped for a while. Now he says he hates him as he is "normal" and gets to go to a "normal" school and do "normal" things. He calls him a "f***ing little retard" and kicks him, shoves him and recently has tried to strangle him. I am very worried about the affect this is having on my 5 year old. He is playing up at school and seems to be trying to get into trouble on purpose. Maybe for attention? My 5 year old's school are also concerned about him and have suggested I contact my GP and ask for a CAMHS referral. Our Social worker just suggested "keeping them apart " which is almost impossible when I have 3 children to look after my myself! I do everything i possibly can to keep my little ones safe, but i can't always keep them apart. Does anyone know if there is any kind of help/support out there for siblings of ASD children? I really don't know what to do about this and i'm so worried about my 5 year old getting seriously hurt by his brother (who is now the size of an adult) Loulou xx

Hi, I am also thinking about re-training, so I have been looking at Uni courses too. You can get financial assistance through the OU if you are on a low income. You can also get help through normal Universities too. Loulou.

Hi, Thank for all your replies. He volunteers in the charity shop. Yes, i agree that using a till isn't the same as budgeting your own money, but i think he has the potential to be taught. His mum seems to have avoided doing that. BD, he really has no idea that he has a bank account, or that he has any benefit being paid into it. He just accepts his "pocket money" from his Mum. Whilst i do agree that some of his money should go towards household bills, his mum shouldn't decide on what to do with the rest. It puts me in a difficult situation, as I would be rocking a very big boat if i said anything to her or her son. He doesn't have anyone else, it's just him and his mum which makes it all the more difficult. Loulou

Hi, I am posting this out of concern for a young lad i know. He is in his early 20's and has MLD and ASD. To give you an indication of his level of Learning Disability, he volunteers in a charity shop and seems to be managing fairly well with that. He lives at home with his mum, who seems to have total control of his money. She has his bank card and gives him an "allowance" every week (about £20.00). The rest of his money (from DLA etc) she spends herself. He does not seem to be aware of this and also doesn't seem to be aware that he even has a bank account. To me, this seems totally immoral and also possibly illegal. She is stealing his money! When the mother was questioned about it, she said that her son has no concept of money and would not be able to cope if she gave him freedom over his money. I don't agree with this at all, he has managed to use the till in the charity shop and is more high functioning than she says. He doesn't have anyone to be an advocate for him, so i don't know how things can be put right. Any advice would be appreciated, Loulou.

Hi, Just wanted to send you some <'> >< (i'm not very good with words!). I also felt very down once i received a formal diagnosis for my son, even though i'd known for ages he had AS. Lots of other parents on this forum have also felt this way. That feeling does ease, it just takes a while to come to terms with the reality of it. I hope this is of some comfort to you. Take care, Loulou

Hi, I'm still here! Just very very busy with my 3 monkies. Will have to catch up soon, Take care everyone, Loulou xx

Hi J's Mum, So glad to hear J is not in care. At least you have some time now to get back on your feet. I know what it feels like to be completely burnt out, which I'm sure you are after what you've just been through. You have given me lots of advice and support through hard times. Sending you lots of these <'> <'> <'> <'> <'> Loulou xx

Hi, Thank you for your replies. I have already asked SS and they told me it was down to the SEN team. The SEN team said it's down to SS! I can understand that they don't want to pay as they're already paying for him to be there, but I'm sure they can't deny a child the right to see their family. They are so hypocritical . I know they don't have infinite amounts of money, but they certainly have alot more than me! I also find it strange how they give parents 28p per mile, but they get 40p per mile (plus "expenses" no doubt)!!!! I think i will write to the Head of children's SS and the Head of the SEN department. Thanks again, Loulou.

Hello everyone, My son (12) is at a residential school for boys with AS. It's 115 miles away from our home. The school is 38 week provision, which is funded by our LEA and Social Services. There are no schools in our county that can meet his needs, that's why he is so far away. Anyway, our LEA will pay for transport (Taxi or petrol money) for half terms, end of terms and 2 "emergency" trips per year. Any other trips home have to be paid for by myself. The school can keep boys there at weekends during term-time, but the majority of the boys go home alternate weekends. For my son, weekends home are a reward for good behaviour (he is very challenging), and so far this has been working well. I recently lost my job due to ill-health and i can no longer afford the petrol to go and collect him every other weekend. I was struggling to pay for it when i WAS working, but now there is no way i can. A round trip is over 450 miles, which costs about £70 in petrol . I have spoken to the LEA about this, and their blunt reply was, "We are paying for him to be at school 38 weeks a year, so we will not pay you to bring him home every other weekend." It wasn't so long ago they branded me "uncaring" for wanting to send my child to a residential school. "Children should be at home with their families!" they used to say to me . So now, when it suits them, it's ok to leave a child away from his family for 7 weeks at a time? I know that other boys at my son's school get picked up by taxis at weekends, or their parents get petrol money, so why won't our LEA do that? I really don't know where I stand on this one, or what to do. I am very worried about having to tell my son he can't come home anymore. I am positive it will result in MAJOR problems at school . Any advice would be greatly appreciated. Loulou xx

Hello UtterDoclector, I don't know if this will be of any help to you, but i would like to try. My son is 12 years old (he has AS too) and he has no friends outside of school. He goes to a residential school over 100 miles away from home so none of the boys live near us. He plays on his PS3 online most of the time when he's home and he has lots of "friends" online. He also gets upset/frustrated when these "friends" aren't talking to him, or disappear. What i say to him, is not to take it personally. They don't know that they are the only people he "talks" to and they don't realise that he's upset if they don't talk to him regularly. Some of them may be busy working or doing other things. PS3 is my son's main interest and it's very difficult to get him to do anything else. Some of the people you chat to online are probably also busy doing other things, it's not that they don't like you or don't want to talk to you. Chatting online to other gamers isn't that important to them. From what i've seen watching my son playing Call Of Duty, some of the other gamers can be pretty rude and send offensive messages. I have told him to block anyone who does this, as they are NOT the sort of people you want to talk to anyway. The other thing i wanted to say, is that people who don't like someone if they're not cool/talented/beautiful are not the sort of people you want as friends. Genuine friends like someone for their personality/kindness etc, and as you said you are a good person. That's what counts. As for finding you some genuine friends, i don't think you are going to find them on xbox live. This is not the place for "real" friendships, just casual chit-chat. I am always telling my son that he needs to find other interests, but he finds socialising outside of school very difficult. Do you have a part-time job? This may be a way to meet some new people. Do you have any other interests? I hope this has been helpful, Loulou

Hi Kirstie, Long time no see! I hope you and your little ones are ok <'> . My children are now 12, 3 and 1. I have just checked the Direct.gov website, and it seems as if you can only get cold weather payments if you receive JSA,Income Support or ESA (and only if you fit certain criteria too). It's £25 a week for every week where the temperature is freezing or below for 3 consecutive days. Take care, Loulou xxx

Hi everyone, I have been away from the forum for so long. Time really flies. I just don't seem to get time anymore, but now i've made a conscious descision to MAKE time! My son Kai (AS/ADHD) is now 12. He's been at his residential school for nearly 2 years now. Things have been pretty tough, but i think most of that is due to his age (dreaded hormones!). I always remember back to posts I have read about teenage AS boys, so i have some insight . He is pretty aggressive and defiant at the moment and is trying very hard to control every aspect of his life (and everyone else's). Some of the things he has done at school have really shocked me, but the school say they have seen it all before and feel confident things will get better . My other little ones are now nearly 2 and 4. The 3 year old has been quite badly affected by Kai's behaviour (Kai has been awful to him), so i'm looking for ways to help him cope with that. I'm not sure where to look for help for siblings of ASD children? I am still struggling with my depression and i also have OCD (which i had before but managed to keep it under control). I have subsequently been dismissed from my job on ill-health grounds, so now i have no job . There is no way i could work at the moment anyway, so i'm going to try to concentrate on my children. Stuff the NHS!!! I hope everyone is well. I am going to try to catch up and read as many posts as i can. Take care, Loulou xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Hi Joy, I haven't been on the forum for AGES. It's nice to see you're still here . I am having similar problems with Kai at the moment. He's 12 now and has started getting pretty smelly. He point blank refuses to wash or shower and i have to nag and nag him to brush his teeth. If i manage to persuade him to shower, he just stands under the water for a few seconds and doesn't use any soap or shampoo. Up until he was about 10 he used to let me bath him, so he knows what to do. I think for him, he just doesn't care if he is clean or not, or if he smells. He doesn't see the point in "wasting time" washing. He has no interest in what anyone thinks of him. He's at residential school, so the staff are constantly battling with him to shower, but they have more success than i do as they can impose tougher sanctions. At the moment, the only way i can get him to shower is to bribe him, which is not something I am proud of. If i threaten sanctions, he kicks off, which is not something i want when i am on my own with a 1 and a 3 year old . Sorry i don't have any solutions, but it's definately good to know we are not alone. Loulou xx

Hi, I have the same problems with my son too (he's 12 now). He would only use Milkteeth toothpaste until he was about 8. I finally (and it took a LONG time) managed to swap him onto a toothpaste for older kids. We tried so many different ones and he hated the taste (too minty), colour, texture etc. The one he uses is Tesco Steps (it says age 6+). It's a blue gel, smooth with no crystals (although it is "sparkly") and not too minty. It's pretty cheap too. I have tried him with "grown up" toothpastes recently, but he hates them all! I hope you find something suitable, Loulou.

Hi, I don't know if i've done the link properly, but try this website. It calculates everything you may be entitled to. It takes a while to fill out all the details, but it's worth it. try this Loulou xx