Louisa

My mum & I used to have to hold my daughter down to get the eye drops in at the hospital (she didn't have any diagnosis then). The nurses used to assure us it was absolutely necessary she had the drops applied. When I think back I feel so cruel. She also used to struggle getting her eye's tested even at the opticians because of the machine she had to put her head/chin in. x

Hi I have just opened a bank account for my daughter's small amount of DLA to go in to, as she turns 16 on Friday. I wasn't sure this was the right thing to do as she isn't very good with money (she loses it, forgets she even had it etc) but I thought it may help her confidence to have her own bank card & be a bit responsible. Hope we don't live to regret it!! x

Hi Tally If Skye's daughter is anything like mine, she will be on to it, as she has such a strong sense of taste!

Hi Skye Sorry to hear about your daughter being so sick. Glad to hear she is a little better. I’m afraid I haven’t really got any helpful advice but I do sympathise with you. My daughter was exactly the same when she was little. Like you we tried everything but there was absolutely no way she would take medicine in any shape or form, and it was a nightmare, but luckily she didn’t get ill very often. When she was about 14 she needed a tablet (can’t remember what for). It took us about 4 hours but eventually she took it with a drink and now has no problems with medication (still wouldn’t have medicine though). I’m not sure how old your daughter is, but would it be possible to give it to her in tablet form so she wouldn’t have to taste it? Good luck. x

Hi My daughter has been on Fluoxetine (Prozac) for just on a year now. Her diagnosis is social phobia, high anxieties & depression but she has lots of Asperger’s traits and is out of mainstream school. She was nearly 13, nearly 14 when a locum Physciatrist at CAMHS suggested that she try Fluoxetine, but I and the rest of the family were not too happy about it, feeling that it was just masking her symptoms (I don’t feel she has real depression anyway). He told us that he had a daughter around the same age, and if it was his daughter with the same problems, he would not hesitate to treat her with it He also told us that suicidal thoughts could be increased whilst on this drug but this is very rare. Anyway I still wasn’t convinced and said I would think about it. CAMHS then got a new Physciatrist who again said he felt it would benefit my daughter (although I am convinced he didn’t read her notes and just agreed with what the last guy said). She has seen him 3 times since & he never remembers her but tries to pretend to and when asked admits he doesn’t have time to read the notes. Anyway L went on Prozac and it took about two months to have any effect. She has not had any significant side effects but she has been sleeping more than she used to and often feels sick (apart from the usual anxiety sickness). Prior to taking this medication she was unable to go into shops but now can. It has also helped her to be able to attend her school (a school for pupils that can’t handle mainstream school but there are only about 6 pupils there at any one time) but she couldn’t do this previously. So in summary, this medication is definitely no miracle cure; our daughter still cannot socialise & sometimes can’t attend even this school but it has helped her a little and family can see the difference in he confidence levels. Whilst she has been on Fluoxetine, she has been having weekly sessions with the psychologist at CAMHS and has done a bit of CBT but this has been unhelpful as she is so rigid in her negativity and thinking. So in summary, I don’t think it is anything to be afraid of, and it may be worth trying for you son. Good luck and let us know how he gets on. xx

Hi Teresa My daughter has been having CBT (supposedly)with CAMHS for 2 years with two different Psychologists and it has done absolutely nothing. I think it is a mixture of them not being very good and my daughter's negative mind & rigid thinking. I also tried to do some on-line with her but she used to say "mum this really isn't helping" so I gave up. I also asked her to consider Hypnotism but she freaked out! One of them did show her some deep breathing exercises which she said helped a little. x

Hi Lisa I sympathise with you. Our daughter is exactly the same. She is 16 in July and I am at my wits end with her and don’t know what to do for the best. The diagnosis CAMHS have given her is depression and chronic anxiety (I think she has AS). She has very limited social skills, eating issues, high anxieties, sleeping disorder, rigid thinking, extremely low self esteem etc. She has been out of mainstream school since year 9 and after being put on prozac, now attends most mornings at a medical school. She is due to take 7 GCSE’s but has very little motivation to study. She avoids everything that she doesn’t want to or can’t face – and at the moment is doing this by sleeping and listening to her ipod (apart from bedtime – she refuses to go to bed at a normal time and has done so for years). I know what you are going through – mornings are a nightmare in our house, trying to get her up and out of the door every day. Her new rota now is to sleep when she comes home after lunch as she says she doesn’t have to think about things whilst she is asleep. Like your daughter, she has very little interests. She is interested in fashion and music though, and would like to join a drama group but hasn’t got the confidence. Like your daughter, when she was younger she did ballet, dance and tap, judo & swimming but got fed up with these. She should be starting college in September but doesn’t know if she will be able to face it, and doesn’t know what course to take either, and has no close friend who she could start with. I wish I could give you some advice. Does you daughter have any idea what she is going to do re further education etc?

Hi Our daughter went to a summer camp when she was 13 – it was a Do it for Real, which are a national organisation owned by the YHA. Her diagnosis by the way is social phobia, anxieties & depression, but at the time she had no diagnosis and had never been seen by CAMHS. She had just started a new high school as she was very unhappy at her first one, and was invited to this camp by one of her new friends to stay a week and do performing arts. She was very flattered that this girl had picked her, and assured us she wanted to go. Anyway, about 4 days in to the week, we got a call from one of the camp leaders who said that our daughter was not eating and seemed to be surviving on dry bread! They asked what she liked to eat and I told them. When L rang home from the camp the next day, I asked her did she want to come home but she said no, she couldn’t let her friend down. Anyway at the end of the week, when our daughter got back she was devastated and cried her heart out. She said that the friend who she had gone with, had tried to swap rooms with another girl, but the girl didn’t want to. She also said that that they didn’t give her any of the food I told them she liked, as the chef was not prepared to cook any different meals. Just thought I would let you know of our experience. I would recommend if your son goes, that he takes a mobile (the camp advised not to take them). I know 8 is a bit young for a phone but at least he will be able to truthfully tell you how he is. L mostly told us she was fine because there were queues of people behind waiting for the phone who could hear what she said and she is very sensitive. I don’t mean to put you off – it may do your son the world of good, but our daughter’s self esteem was very low before she went & rock bottom when she got back. x

Hi My daughter who is 15 has always been, and is still like this. She too has extreme anxiety & asperger's traits but they said she didn't tick enough boxes. When she was a baby if we were out in a restaurant/cafe she would be gagging in her high chair and customers would be staring at us! If for example, her little brother spills a tiny bit of mash potato on the table she starts to gag & has to have it wiped up immediately. She cant stand anything runny or soggy, her foods cant touch each other and she has to analyse the food before she eats it. She has never grown out of it and is an extremely fussy eater. Sorry this isn't much help. Hopefully somebody will have some advice. Louisa

Hi We went through a similar situation with our (then 14) daughter so I know what you are going through. At the time CAMHS thought she had Asperger?s but hadn?t diagnosed it and we had no statement either. Our daughter wasn?t bullied either, but was highly anxious in school and was treated really badly by the SENCO and the Head of Year, who said it was all an act. She eventually stopped attending. Months down the line, the head teachers got to find out what was going on & they offered to help our daughter in school by letting her have a sort of time out card for when she felt stressed, plus other things, but it was too late by this time, the damage was already done and she has not been back since. She was then referred to an Education Medical Service which is a learning place for children of high school age but it is only part time. It is actually a Pupil Reintegration Service to help build their confidence and then get them slowly back to school, but for children who cant/wont go back, they let them stay, like they have with our daughter. It took my daughter nearly twelve months and to be put on medication for anxiety before she was able to attend there everyday but now that she does, she feels safe and is pretty happy there. She is doing 7 GCSE?s in May/June. There is only about 6 children there and the teachers are really patient and try to boost their self belief and try to deal with their issues, as well as educate them. If you son could get in somewhere like that it may be the ideal solution for now, as the staff would still keep in touch with your son?s high school to get the work etc. It was CAMHS who did the referral for us. Good luck

Thanks Kazzen - As my dd has missed so much schooling, she obviously wont do as well in her GCSE's as she would have done, although she has no learning difficulties. Therefore, she will probably end up having to do the lower/vocational courses. They have said she will get some C's but she had to drop some of her subjects due to there not being the staff to teach. I have contacted Connextions by email, who have advised I go down the route of a Section 140, as Bid mentioned. However, when L was filling in some applications forms at her part time sort of school, the Connextions School Link worker told her to tick 'no' for any disabilities! What is that about? xx

Hi Kathryn Thanks for sharing your experience and knowledge. I have decided to take your advice (and others) and not bother applying for the statement. I was also going to try to push for a diagnosis. as I still feel she has Asperger?s, (see previous posts) but I think CAMHS are just stringing us along, until she will be discharged at 16, so I don?t see there being much benefit now. I will start to visit some FE colleges with my daughter and see what they have to offer. However, she has no idea what courses she wants to take. I am quite worried about the travelling though, as she currently gets taxis to her part time school. There is a college in our town but it isn?t one of the best. I do wonder though whether it would be worth her going there, just because it is near, and she would be able to get home easier if need be? Kathryn I have read your previous post (I don?t post much but I do read others a lot) about how well your daughter has done in her BTec Diploma and it brought tears to my eyes. She is doing really well to stick to her course, and is an inspiration! I am off now to take her shopping whilst the shops are quiet! Since going on Prozac, she is able to go in shops if there are not too many teenagers! x

Hi Thanks for all of your replies and sorry for the delay in replying; both kids have been sick. I think that I will have to see if there is a SEN Careers Advisor we could talk with, or somebody at Connections. It seems though, that unless she has a statement, or is on School Action Plus, then she may not get much help. I am quite confused by it all. Her school, when she was attending, eventually said they would put her on School Action Plus, but then we couldn?t get her back in, so she was referred to where she is now, so presumably that means she is not on it. I will also have to try to speak to the psychiatrist at CAMHS again, to see what he thinks. As for what my daughter wants ? well she says that she really wants to go to college and be able to mix and do well, but she is terrified. The part time place she is at now only have 6 pupils, and she struggles with this. If anybody can give any further input, we would very grateful. Thanks again. L xx

Hi wonder if you could please help. Our 15 year old daughter has been out of high school for 1� years and is now attending an Education Medical part time school. She has no diagnosis except for social phobia and depression, but does have lots of the traits of asperger's. They feel she doesn't tick enough boxes. She is now on prozac. Although she was referred to this part time school over a year ago, she has only recently felt able to attend every day. Anyway her psychiatrist at CAMHS told me, last week, to request that the part time school she is at, apply for a statement for her, and that they will fully support it. When I asked the school, the manager said they could not do this because they are not a proper school, they are just a service, and that her old school would have to initiate this. (Her old school were useless by the way). She also wondered why CAMHS said this, as she feels there would be no benefit at all of her having a statement as she is in year 11 and feels it wouldn't be any use at college (if we could ever get her to go!). Academically she doesn't have any problems but often cant work with other children due to her high anxieties. I am not sure therefore whether to apply for this statement myself (although I tried once before and got knocked back because her high school had not put anything into place, i.e. an IEP etc) but obviously would if it was going to help her. Just wondering if anybody knows much about this please? Many thanks. L x

Thank you all for your replies ? they?re interesting. Katherine I agree with your comments about people with AS being unique etc. I?m not sure whether to push them re diagnosis or just concentrate on getting her helped. As she is out of school anyway now, I?m not sure being diagnosed would have much benefit. I am glad your daughter has come through most of her hard times. Thanks again everyone xx