bonbons

Hi all.......My 15 year old has been at a pupil referral unit since coming out of mainstream education last September. She really does not enjoy going even though it is only for 5 hours per week, and less so now that teaching staff have changed and there are other children there now also. The staff freely admit that they find it hard to engage her as she easily gives up and demands a lot of one to one support.She is struggling to interact with the other pupils and I feel that the staff do not fully understand her difficulties. They are also due to move to a new location at the end of the month which again, could cause problems for DD, especially as she has a big move coming up anyway. Thing is, her statement is ready to be finalised and she has a place at an independent specialist school where she hopefully start around Easter so my dilemma is, shall we and can we choose not to send her to the PRU? She has comparatively little time left there anyway, and she is really learning so little, educationally,socially,or emotionally. I did convey my concerns regarding this move to the LEA, and they did understand but didn't want to be drawn into any decisions we may take on whether or not to continue sending her although, did say it would be possible to come to some agreement with PRU? could we get into any trouble if we choose to keep her at home until she can start at her new school?

Hi..... I hope you don't think I'm hijacking your thread kezt, but I have a quick question along the same lines. My proposed statement was equally vague and we were also unhappy with the ASD provision they suggested so I returned the form stating that we were confident that only the specialist out of area school we had asked for, could meet DD's needs and why, and requested a meeting as we felt that the wording of the statement would need to be changed as provision has not been quantified and specified etc..... Didn't go into too much detail as I expected to highlight such points at the meeting, however, within a couple of weeks we got a phone call to say that they had decided to grant the place we had asked for amazingly!! Does anyone know what will happen next? Will we still need to meet with LEA regarding the changes to the statement before the final one is drafted? Does it matter any way since she will be at a specialist school which we already know her needs will be fully met all of the time? Thanks all.... And good luck to you kezT. X

Hi from my iPhone too...... Good isn't it? Sending a smile back!

My daughter was diagnosed last year having been admitted to a young persons psychiatric unit for assessment following many behavioural problems both at home and at school. The senco teacher from her (then) high school attended one of her review meetings during this time at which the paediatric psychiatrist explained that she was being assessed for aspergers. I remember watching this teacher shake her head and make notes, and afterwards she said to me that if she did have aspergers syndrome, she would "expect it to be very mild". I later relayed this to the head of the short stay school who taught my daughter during her time there, and who herself had two daughters with AS, and she was furious! She said there is no such thing as mild aspergers as their is nothing mild about the difficulties faced and the impact they can have in her life! Very true!!!

my 15 year old has had similar problems for months. GP says she thinks it is anxiety related and gave her domperidone which haven't helped. She has now referred her back to cahms as she is advising melatonin to help with her sleep issues, idea being that if she can sleep better then she will feel less anxious which could then help her gastric problems.My daughter says she has no pain or even queasiness but is just sick and sometimes there is blood in it....GP puts that down to retching. It happens pretty much every day but is usually small amounts.

I live in the north west and although we waited a couple of months for our daughter to have the ADOS assessment, it actually only took a couple of weeks for the results to be revealed to us! Not bad hey!? x

just thought I would update you all. Having returned the required form stating our objections to the provision recommended by the LEA and other details contained within the proposed statement, we had a phone call today from them to let us know that following a meeting at which Daisy's case was discussed, they had decided that they agree with our objections and agree to providing a place at the special school we had asked for! No quibbles, no hassle, no tribunal! We are so pleased and so is she! She knew something was afoot when I produced a celebration cake lit with with candles!! It's great to see the LEA put the child's needs above the public purse and I know that this has not been the experience of many of you so we consider ourselves very fortunate! Taking her to visit tomorrow. Just wanted to share our good news! :clap:http://www.wkrs.co.uk/info/dvd.htm

Thanks for your replies and reassurance. When younger, and the ticks were first evident, my dd wasn't an anxious child at all, in fact, often noticed them more when she was relaxed watching tele for instance. Since high school, she has become very anxious and very stressed and although a lot of this subsided since coming out if education , recent changes and this yet to come, seem to be affecting her more than she cares to admit. Some days it is subtle and, as you say, noticeable if you know what you are looking forand other days, it is all too obvious! Have a Camhs app next week anyhow so will see what they say. Thanks again to you both. X

just wanted to thank you sally for all your help and advice. There is a lot of information for me to digest! I do have a guy recommended to me by parent partnerships on Tuesday who can look over the statement and accompany us to tribunal if it has to go that far. I have filled in the yellow sheet and requested a meeting with the LEA.....keep you posted. Beverley

My daughter is 15 and in the process of awaiting finalisation of her SEN and a place at a new school which must be very daunting for her. She has been out of education for nearly a year. she suffers terribly from anxiety and I have recently noticed that ticks, something that she has not had since about the age of 9 or 10, have recently returned, I have not said anything to her as I think she is unaware of it, but I am really concerned.Has anyone else had experience of ticks coming and going, even years apart, and would you say it is anxiety related?

after our initial enthusiasm for suggested provision in letter accompanying proposed statement, have realised that this provision is not suitable for my DD's needs. security was a big issue, both from our point of view and the schools, as she is a runner and it is not a secure building, and ironically, the day we went to view this provision, she absconded from the PRU and was found wandering alongside the dual carriageway by her taxi driver on his way to pick her up!! much of our focus too when highlighting what her needs are, was upon social skills. self esteem, and behaviour modification as opposed to academic success. We have decided to go with our initial request and push for a non maintained special school, out of area. I know that I need to send the yellow form back advising the LEA that we don't agree with their suggested provision and some other changes we would like making to the proposed statement.....do we have to list all of these on this form? Really not sure what to fill in at this point? Do we request a meeting, or is it sufficient to contact them by telephone?

well!....it looks like we all speak the same language!! feeling a bit more together and re-focused now. Thanks for all your kind words and much needed support! Charlotte...the school we are visiting on Tuesday is West kirby residential school which is about an hour away from where we live. It sounds perfect in what it can provide and seems to meet all of my daughters needs so, pending visit, think we will pushing all the way for this provision!http://www.wkrs.co.uk/info/vision.htm

just to say that gp visit went very well. She prescribed zolpidem...just enough for 4 nights, and designed to help her get into a better sleeping pattern, but said also that she would definitely benefit from melatonin and will ring CAMHS on monday to tell them of her recommendations as she cannot prescribe it herself.

my daughter has similar sleep problems which, I'm sure, have an adverse effect on her mood, which is unpredictable at the best of times! I mentioned it to CAMHS ages ago but they said to really work on her routine. We have done this...she is currently out of education and this had an impact on her routine, but despite her compliance, she is still awake for large portions of the night. I have a docs appointment for her tomorrow regarding her ongoing stomach problems, and am considering asking the gp but am not sure if a gp can prescribe melatonin? I work in pharmacy and have only ever seen prescriptions written by consultants, and the paper work needed to be provided in order to order them from a specials lab, used to be very specific, but seems lately, to be easily available without it? Perhaps it's supply has become more relaxed?I can only ask the question! Also, is it safe to buy off the internet? I would be a bit worried giving her something if I couldn't be sure of exactly what was in it!?

proposed statement through and full of weasel words, no mention of 1-1 support advised in my reports by relevant experts, and they are advising ASD provision in local mainstream high school rather than the non maintained specialist school we asked for which is out of area. Ok, so we go through statement in detail, and ask for changes to the way it is written to make it more secure and lawful, and I understand that cost is a consideration to the LEA but tbh, after consideration and knowing that my DD really wanted to back into mainstream, we decided to take a look at the designated provision today. Nice school and very helpful staff but they were very honest in what they feel they can and cannot offer, explaining that , even if they applied for extra funding, they could not guarantee 1-1 support all of the time and that all of the children on the unit attend mainstream for much of the time, indicating that if my daughter couldn't cope, she would be without company. They also raised concerns about her previous episodes of running away and problems during unstructured time....came away with so many doubts. Then just to make matters worse, despite dd expressing a desire for a new start this morning, and seeming quite positive for a change, whilst hubbie and I were on this visit, she went down the road to her old high school,Knowing she shouldn't as she is excluded!), and hurled abuse at the headmaster by all accounts and then later, whilst at the PRU, where she currently receives a limited amount of education, refused to do any work and ran away, out of the building!!! It's been a terrible day with her, and I thought we were finally on the right track but now worry that she may have ruined any opportunity to return to mainstream as she hoped for, or even whether or not it is the correct environment for her at all. We are visiting the special school recommended to us next week to see how that works and hopefully be a bit clearer about what is best for her, and are even considering the possibility of residential, something I hate the thought of, but I'm starting think that more intensive support is necessary if she is ever going to be adequately equipped for the future....So worried and feeling that nobody can help her. She is so rigid in her thoughts, hard to motivate,negative, unpredictable, and can become very angry and aggressive when things don't go her way or she is persuaded, however gently, to do something she doesn't want to do. Had a chat with her tonight to find out why she did what she did,to let her know that how unacceptable this behaviour is the possible consequences of her actions with regards to the new place she wants so much, and gave her a clear warning in advance,of sanctions put in place if she behaved like this again......might as well been talking Hebrew, but did eventually get an apology and a promise not to do this again!? Won't hold my breath! Don't expect any answers to these problems....just wanted to vent!! Finding it hard when I spend my (many) waking hours supporting her, trying to make her feel better, listening, caring, worrying, e-mailing, writing, making phone calls and appointments, and researching, only for her to say.....'You never listen', ' you don't care''nobody does anything'...etc ah well! pick up the pieces again tomorrow, find some energy from somewhere, and do it all again!!!......many of you know how it is!!!

oooh Sally! thanks for reply....now you have got me thinking!! I commented to my husband last night whilst re-reading it that i was sure i'd seen mention on here in the past about the specific wording used in SEN's, and have just double checked again and you are right...a few 'will need to's' will do's', but an awful lot of 'should's'!!!! There is also no mention of which teaching staff will be involved or how many hours 1-1 she will receive but assumed that this will be ok as the unit suggested only caters for 12 pupils and is ASD specific....naturally assume that levels of support will be high with a good ratio of teachers to pupils? Should I ask that they specify even so? will it cause huge delays by asking for these changes? What should I be asking of the unit when we visit? Sorry for all the questions but my initial jubilation has started to turn to suspicion and I feel I need to not get too carried away with the relief of it all, and make sure this statement is solid to avoid problems in the future! Will contact parent partnerships tomorrow....they have been so helpful so far, and thanks for all of your very useful information.....and good wishes!! Also, does anyone know if transport would be provided? The school is about 10 miles away from where we live and getting her there ourselves would be very difficult . She certainly wouldn't be able to manage the 2 buses she would need in order to get there herself....

Hi......Feel like we're at the end of one journey and at the beginning of another at long last!! We finally have the proposed statement for our daughter! We have read through it several times and it all looks good to be honest, and covers everything we raised. The named school isn't the one we asked for though, however, we had concentrated on non maintained special schools and the LEA are recommending an ASD specific unit at a maintained high school, something we hadn't considered as she had so many problems at mainstream and also, we were told originally that all places in my hometown at this unit and one other similar unit, were full. It seems that a child who currently has a place there but does not have a statement, will have to vacate it so that my daughter can take it, which all seems rather unfair and I can't help feeling concern about this amidst happiness and relief for my own child! My daughter is thrilled to have a new school at last though, and is happier in fact, that it is part of mainstream as she says she will feel 'less different'.We will visit the school this coming week hopefully, and intend to have 'parent partnerships' look over the proposed statement to make sure we haven't overlooked anything before we agree to anything....but fingers crossed!

Hi! I have the beginnings of my own little reference section on the subject if I'm honest, but sounds like all I need is this one! Will take a look....thank you.

My 15 yr old had an IQ test but she really didn't want to do it! It took 2 attempts on 2 different appointments to complete it as she has a real fear of failure and very low self esteem. Needless to say, she didn't do too well, but the the report clearly states that the results have no relevance to her aspergers DX.

A bit late replying but thanks for advice! I did , in fact, contact PCT as you advised, and outlined my concerns regarding CAMHS and specifically the lack of support and understanding for those on the spectrum and their families, and amazingly, when I went for a meeting with the psych nurse who has been seeing us, she couldn't be more helpful! told me that they have identified the need for more support in this area and have now set up a board which includes a couple of specialists in ASD who meet to discuss individual cases, and they will now look to pass DD's case on to a particular member of this panel who is a learning disabilities nurse with a background in ASD/Aspergers! The original idea to introduce CBT will not be rushed into as it is felt that it might be too much of a challenge due to her very rigid thinking and if it didn't help then she may see it as another failure and affect her self esteem further, a point which I fully accept and appreciate. All in all, looks like we're finally on the right track and hopefully,the right school placement is not too far away either! what a turn around!!

At 7 or 8, my DD told me that she 'didn't fit in'. I was alarmed by this comment at the time ( pre dx), and I asked her if she meant at home or at school or......and she said ' I don't fit in anywhere. Still brings a lump to my throat! Now at 15, she describes it as ' not understanding herself', of 'not belonging'( especially with regard to her place within the family), And even once asked me if she was adopted, as she sees no resemblance to us or her siblings!! Our family mantra has become 'don't take it personally', as she doesn't mean to hurt our feelings. but it is hard to hear sometimes, and even harder to reassure her that she is very much ours, and very much belongs!...

apologies...I managed to post this in the wrong forum and couldn't figure out to move it to 'help and advice'!!

Hi jeanneA, Haven't commented on your thread before but I have been following your story and wondering often how Glen is getting along! Just wanted to say 'Hi' and wish you luck. x

Hi all, just as a bit of background info, my 15 year old daughter has been under CAMHS since september 2009, referred ( with a battle) following problems both at home and at school with aggressive behaviour, self harming, and anxiety. A year later, their professional opinion was STILL behavioural, which I accepted, but kept asking 'why'? Constantly raised my concerns about her obsessions, social problems etc, as I just felt there was something else going on! After discharge from their care,it wasn't long before a serious incident at school sent her straight back again, and a place quickly found as an inpatient in a young persons unit where, low and behold, atypical aspergers syndrome was diagnosed, and she was later confirmed to be on the autistic spectrum using an ADOS assessment. when we returned to CAMHS following her diagnosis, the specialist psychiatric nurse under whose care she has been,made it quite obvious that she was sceptical about the dx which was a real blow for us as we finally felt we were getting answers that made sense, and could, at last, get the help and support DD needed. Our meetings since then have been less than helpful....eg. I expressed my concern that she was becoming quite isolated ( now out of mainstream ed and awaiting statement to allow her a place at a specialist school), and that on her rare walks to her friends house, she would tend to wear a hat, sunglasses, and headphones in order to avoid seeing people 'looking at her funny'. She was very quick to comment that 'she always says people look at her because of her style of dress' ( emo style...well, her interpretation!), and unwilling to see that it could possibly be her misinterpretation of people's expressions and intentions....as identified by other professionals! That's one incident that springs to mind, but there have been plenty others! It feels almost like she doesn't want to accept that she overlooked this possibility in the first place! Last October, I asked if we could possibly see someone more ASD specific if possible as I didn't feel that this lady fully accepted nor understood my daughters difficulties, and they finally got back to me today with a letter in the post for an appointment with...guess who!? I phoned to cancel and explained why, and this nurse called me back within half an hour. She told me that there are no ASD specialists there, and that we need an appointment with her, as DD is under her care, in order to work out a care plan. She also said that she had been asked to supply a report to the LEA towards her statement, and hinted that she wouldn't be able to if we didn't continue to work with CAHMS! I don't see that they have done a great deal or her tbh, in fact, I sometimes wonder whether, had they made an accurate dx themselves, perhaps support in school would have been provided earlier and she may even still be in high school and coping! Who knows.... Am I right to think also that she could hold back this report until we return? Surely she has all the info she could possibly need! DD is doing well at the moment in many respects now that the anxiety of high school no longer exists, and she is has stoped self harming completely, her anxiety symptoms are much reduced, and is working hard ( as we all are) to deal with potential meltdown triggers...she is a pleasure...most of the time!!! I am guessing however, that they have to decide whether she still needs them, rather than us or her?

Thanks!..pm'd you also.....and good luck!