vicbee

Hi Kazzen. Thanks for your response. At the swimming lesson, it was just girls in the changing area and it was another girl involved. im not exactly sure of what happened. My daughter is 12 and as she is repeating year 6, she is older than the other kids in her class. one thing i am not very happy about at her school is the fact that both the girls and boys get changed for PE in the same room. When i actually went to look around the school when i was choosing it, i happened to be in the class when the kids came back from their PE lesson and i wasnt even asked to leave the room, the kids just came in and all got changed. i actually felt quite embarrassed. there are only 14 kids in the class with 11 being boys. i am going to discuss this with the head teacher tomorrow. i have actually managed to have quite a mature conversation with my daughter tonight about what has been happening and she has been quite honest with me about the things she has been doing - put it this way, she couldnt deny them because i told her that the headteacher had told me about various incidences. However my heart broke at one point because she just suddenly broke down and said 'but mum, sometimes i just cant help saying these things and i dont realise what i am doing'. it was at this point (and it is something that i have kept hidden from her apart from when we are in front of doctors about the possibility that she may be on the autistic spectrum. I havent wanted to say anything to her about it until we have a diagnosis because she gets very upset and paranoid about anything medical and i didnt want her worrying that something was medically wrong with her when its not. i have tried to say to her in the past that maybe her brain works differently to other people but she doesnt really take me on. However tonight we had quite a good discussion about it and i sort of think she understands but i told her that it wasnt an excuse for her inappropriate behaviour. she seems to understand and listen at the time but then it just happens again and again. aparrantly one of the girls in her class has told her the reason why she doesnt have any friends is because she says not very nice things to the other kids. I dont know if the message is getting through or whether it ever will - i just dont know but every day i worry about how she will cope at high school. Next September just seems to be coming quicker and quicker and there is so much i need to sort in the next 9 months from hopefully getting a diagnosis, applying for statutory assessment, sorting out her severe eating problems and anxiety. so many issues, so little time!

Thanks for your replies, im sure i will have a few more this evening. She is regularly seen by CAMHS and although the incident in the park happened a while ago and CAHMS were told about this, obviously new stuff has come to light now at school. I feel absolutely terrible because when i see parents at school now I wonder if their kids have told them what she is doing/saying and Im becoming paranoid that they may be looking at me thinking what on earth kind of parent am I. At this stage it is difficult for the headteacher to say anything to her class about her to make them understand her behaviour because she has not yet been diagnosed with an ASD. The headteacher firmly believes in making other pupils aware if someone has a disability and gives them information to help deal with that pupil's problems. I have every faith in the headteacher and the school to deal with the situation. the headteacher and her class teacher had an informal discussion with Elizabeth when things came to light last week and i told the headteacher that i will let her deal with what happens at school and i will deal with what happens at home. i dont want my daughter to lose confidence in the teachers if i start reprimanding her for something that happened at school but the school are keeping me aware of any incidences. It is such a serious topic and i dont know how to approach it with my daughter without letting her know that i have discussed it with her teacher. I will speak with CAMHS tomorrow to get their thoughts. Phew..heavy stuff!

My daughter is in the process of being assessed for an ASD. She started a new school (repeating year 6) in September after we returned from living in Spain for a year. Everything 'seemed fine' at school the first few weeks but i knew it wouldnt be long before i started getting told things shes said and done. She's insulting just about everyone every other day and obviously not making any friends. It is a very small school and i have to say that they are being brilliant with her but it is very worrying when she is acting very inappropriately in that she makes other kids feel uncomfortable by showing her private parts in the changing rooms at swimming, she told a girl at school that she had sex with another girl in Spain. she also had an incident in a park a few months back where she as lifting her top up to a group of 15 year old boys trying to get their attention after a 'chicken dance' didnt get the attention desired...the 15 year old boys where then trying to encourage her to pull her pants down. i feel so uncomfortable talking about this but it is becoming a very worrying concern for me and i am absolutely dreading her going to mainstream high school next year because for one, her behaviour towards other kids in general is not good and can see her getting a clout and bullied because of it and she is definitely not in the running for being the most popular kid and also, this inappropriate behaviour worries me in that she may be taken advantage of. Does anybody else, without getting into too much of a detailed discussion about an uncomfortable subject, experience the same problem?

I just want to add my POSITIVE experience with CAMHS so far. My expectations of this agency was not high after hearing so many bad stories. so i have been pleasantly surprised by my experience of them so far. My intitial appointment was about 2 months after referral from GP. We had just returned from living in Spain for a year and i had so much to do to get the ball rolling. i dont know whether it was down to the fact that my daughter has major eating difficulties and her weight has plummeted that they have been on the ball but I have had appointments through really quickly, ALL of the staff have been excellent with me and my daughter, and they dont have the prescribed amount of staff in place either. I do however think I dropped on with the lady who is doing all the assessments for the ASD side of things because she told me she has just moved to our CAMHS and is building up her caseload. She is hoping to complete her assessments and provide diagnosis (or not - whichever way it goes) by Christmas. with regards to the eating side of things - they could not do enough to support us. they insist on weekly weigh ins until she was seen by the paediatrician (last week) and dietician (this week) but they have always been at the end of a phone when ive been at my lowest with regard to my daughter's behaviour which has been more worrying sometimes than her weight. How I will feel about them in a month or so's time if i dont get the outcome i want from this - I dont know but I have to say that so far i am extremely happy with the service i have received. Possibly it has been easier because my daughter is 12 and we cant just be sent away and told to wait till she matures!! I think however that the answer may be that someone up above is just giving me a break for once!!!! But yes, my story positive so far but i really feel for everyone who hasnt had a positive experience in these extremely difficult situations as a parent, when you are crying out for help and not getting it.

I love your quote 'well he'll be quiet later - but you will always be ugly'. I use this one quite a lot for various situations - i remember my history teacher telling us it was a famous Churchill quote when a woman said he was drunk and he replied something like - you my dear are ugly, i can sober up!! (I diverge slightly....) Yes, i have this very problem with my daughter - volume control. I am constantly saying 'volume down, volume down' my head bangs most of the day. i always thought it was down to the hearing problems she used to have related to glue ear but she has grown out of that now that she has had a t-tube grommet fitted and can hear ok now but her voice is so loud some days. The wall between our house and our neighbours house is like paper and Im sure she wakes my neighbours son every morning because she doesnt seem to be able to do anything quietly - morning or not. (Just always seems worse in the morning). She will sometimes laugh out in a real cringeworthy hysterical laugh that drives me potty too. I think i will try the volume 1-5 thing. Julieanne, I have to say that since I realised that my daughter may be on the spectrum (she is currently in the assessment process) my whole attitude to obvious disability and so called 'unruly children in public' has changed dramatically. i try to think to myself if i see someone with a child 'misbehaving' that maybe that child has problems other than just being unruly. I think unless you work with disabled people/children or are a parent/relative of a disabled child you are never going to fully understand as most people just arent aware and are ignorant to disability. Frustrating I know but a very sad fact of life. I understand your frustration with the volume thing. My daughter gets really cross with me when i tell her to turn the volume down and it is sometimes the cause of some of our 'where did that argument all start' arguments (I take it everyone experiences those 'where did that argument all start' arguments?? I had one this morning that escalated, culminated in my daughter now being punished by being sent to bed at 7pm not only tonight, but tomorrow, wednesday and thursday...all over...A YOGHURT!) THE MIND BOGGLES!!

I have just spent 2 hours looking through this website and it gives a fantastic insight into all aspects of ASD. Its the fact that you are actually listening and seeing other people (in the video clips)with the same problems you are experiencing instead of just reading about it. Well worth a look at.

As I am new to this forum - im scouring all the relevant posts on here and have to add to this post! Im at the end of my tether with the toothbrushing story. We have tried every toothpaste on the market and even thought my daughter is 12 she has now resorted to a baby toothpaste (blueberry flavour) with baby toothbrush. The mere thought of me asking her to brush her teeth sends shivers down my spine because i know the eruption that will explode when i tell her to do it. She has got into a routine of doing it now however I am not that sure that she actually does it because she always wants to do it in private and i am not allowed to look. If i dare ask if she has done it or ask to see if she has done it properly - she screams and goes completely mad at me. I can tell by the state of her teeth that she isnt brushing properly and even though i tell her she will end up at the dentist having to have them out - she says she doesnt care and not bothered that she will have to go to the dentist. (She must have a short memory as she is doctor/needle phobic!!) If only she realised!!! I have to say that i have completely given up on it now. I do check her brush in a morning and after bath time and it is wet but i doubt she uses the toothpaste. Im just dreading the day those fatal words come..."Mum, my tooth is sore" because lets face it - NO ONE likes toothache!! any tips out there to get the message across? Its the outburst i cant cope with.

OH - and on a lighter note - ive been trying desparately to change my location on my profile - thinking 'i dont live in flippin norfolk broads!!!' - ive just realised!!!!!!

Hi Daniel's Mum!! Just reading your post and I know that is exactly the position I am going to be in at the end of all this. Its so frustrating when you KNOW how much all this is affecting your child's life and everyone elses but are just left at the professionals' mercy. The way you describe Daniel is exactly how my daughter is - her biggest problem is socially - she acts like a 5 year old most of the time even though she is 12. She even looks only about 8 because she has lost so much weight and not developing well. She has always played with much younger kids because they seem to be more accepting of her immature behaviour. I am absolutely dreading high school - in fact Ive only just realised myself in the past 6 months that she may be on the spectrum - I moved to Spain last year to start a new life and also thinking i was giving her a better schooling - thinking there was something wrong with society here in the UK that she was being treated like she was in primary school - outcasted and no friends and it could only get 10 times worse in high school - only to find out in Spain that the problems continued and it wasnt actually society but that there was something wrong with her. to compound the problem the total change of moving to another country brought about a whole set of other anxiety problems. We had no choice but to return recently because i couldnt get any help over there for her or myself. So now - facing high school is my main worry - if they dont cope so well in primary school - whats it gonna be like in high school where they are expected to act a certain way to fit in - its bad enough for 'normal' kids. My daughter just wants to play with her teddies and dolls and act like a baby - not be pressured into smoking, drinking and having sex like other teenagers of that age. The thing is - its more heartbreaking for us as parents because we see exactly what is happening to our children - I dont know about your son but my daughter is completely oblivious to the way children of her age respond to her. i see the pattern over and over again - she meets someone, they get on for a few days and then immediately the cracks start to show as soon as the other child realises that my daughter isnt actually on their level. And its hard to do anything about it when you dont have a diagnosis - if only we could just tell everyone - she/he is not really a pain in the backside - they have a problem communicating!!! AAARRRGGGHHH its so frustrating and really heartbreaking to see how people respond to YOUR child. everyone wants their child to be popular but Ive just had to accept that mine isnt and that i need to just give her all the love and acceptance she needs myself. Luckily she is being allowed to repeat year six and is in a wonderful primary school with only 49 kids in the whole school - its mainstream but i know the big battle comes next year and i am dreading it and especially if i do not get a diagnosis. Please keep us updated as to how you get on with diagnosis and i guess like i am realising - we are not alone!!! At least we have other parents to understand exactly how we feel. Sod the professionals!!!! Vicbee

Thank you everyone - nice to know Im not alone - although I did suspect many people would be on their own - however everyone I seem to read about seems to be in a couple. I do think a lot of the time it is easier in some senses to be on your own because Ive found even before things got really bad with my daughter - when I had a man in my life (which hasnt been very often) you are more preoccupied appeasing them and cant give your time fully to your child/ren. However its at the really bad moments I wish I had someone to alleviate the pressure. Mainly though - as I have been on my own for the past 5 years I wonder if I will ever meet someone and someone who will understand ASD kids. Think maybe there should be Speed Dating for ASD parent singles !! Its the problem of never going out because i never have anyone mad enough to want to look after my child - and she wont go to anyone except my mum who is now in hospital as we speak having a hip replacement!!! So dont think i will be out for a few months yet!! Will have to continue my sad and lonely life on here I guess!! oh, and i gave up the drink about 2 years ago - and smoking - so I really am a saddo!!! YAWN!!! Mind you i dont think I could ever cope with a hangover and my daughter at the same time ever again!!!

Hi - this is my first post. My daughter has not yet been diagnosed but because she is having mega eating problems surrounding an extreme fear of choking, CAHMS are pushing things forward and we will hopefully be getting the ball rolling shortly although we have two major issues - the spectrum and her eating. She has a BMI of 13 and they are extremely worried about her. But trying to reason with someone who cant reason - and convince her she needs to eat and drink to survive - if I was able to do that then we wouldnt be in this position in the first place! Anyway I just wondered how many guys/gals are having to deal with a child on the autistic spectrum and they are on their own in all of this with no support from a partner. Would be nice to hear from you. Vicbee