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