JenRose

Mandapanda im so sorry you are going through this and for your DS it must be very worrying. we went through this for 2 years with our DS,he totally refused to go to school for 2 years,we were threatened with court,told it was our parenting you name it,he was eventually dx,d with AS. is your son statemented, also you dont say what his diagnosis is? with regards to CAMHS well, erm hmm, we havent had a very good experience with them for either of our children,but i know there are parents who have. have you written to the LEA and asked for him to be assessed,we had to do this and it was refused but we got there in the end and he was statemented and is now in an independent special school and thriving. Dont give up hope,you are your sons best advocate,there are a few of us on here who have been through what you are and if i can help you in any way just shout!!! jen x

im so sorry you are going through this clarypuff. i dont know much about child in need meetings but didnt want your post to go unanswered jen xx

thats really good,well done you dooday for taking it all the way!!! this is what i dont understand, we had EXACTLY the same situation/scenario with DS, put in a complaint,asked for the video of the ADOS/notes hey presto he gets diagnosed. so why are they doing the same with DD? shes already had a CDC assessment which said triad of impairment there and shes been privately dx,d as well. its almost as if they are testing us,and this psych who we have complained about is fresh out of uni and only just qualified,shes very young and not experienced enough. the mind boggles!!!

ah didnt think of it like that. ive no wish to do a formal complaint,we just want her referring to an OT and to get confirmation that she is still being assessed for an ASD as we were led to believe,we do want an explanation though as to why they have ignored her sensory difficulties and focused on our parenting skills,but then i guess thats CAMHS for you!!!

thanks cmuir and js mum. i too dont have much faith in CAMHS not especially after they messed up DS,s dx 3 years ago, we got there in the end but only after much pressure from us and a refusal to attend a parenting course telling them that when they run a course for parents of children with an asd we would attend. i have drafted a letter asking for clarification of whether they have or are about to refer DD to an OT for help with her sensory difficulties and if she is still being assessed for an ASD as we have been led to believe. i dont understand why a senior psych is now involved, we have certainly never met her nor has she met DD. perhaps this psych we saw first (who is very young an hasnt been there long) needs someone to hold her hand. i have said that when we received clarification on these matters then we will be in a position to arrange a mutually convenient date/time to meet. cant beleive they are doing this to ANOTHER one of my children after all the mayhem last time. it really makes me want to

Heard back from CAMHS today re our complaint at the way our parenting skills were said to be causing our daughters reluctance to toilet train. DD has hemiparesis and a private dx of PDD-NOS, CAMHS are "supposedly" assessing her for an ASD. anyway they are "sorry" that we felt downhearted at our last appointment and due to the issues raised the psych has "invited" the Consultant psych to a meeting they would like us to attend. Definate case of ###### covering me thinks. now im not sure about attending this meeing because a, We have never met this consultant psych before,nor has she met DD and i presume shes the original psychs boss b, they will try and "spin" it that we misunderstood,communication error etc etc c, Nothing has been said about them referring DD to an OT or that they are still assessing DD for ASD. so im unsure of what to do really. just wondering if anyone has some advice for me. im sick of falling out with doctors and CAMHS and LEA,s over my children,thats all i ever seem to do-write complaint letters about lack of service/bad treatment etc and im starting to think its me with the problem.

Thanks karen. I would refer her to the NHS OT but i know from DS still being on the waiting list 12 months after being referred and also there is an 18 month wait!! i think we will have to get a private OT to come to our house and see DD. thanks for your advice it reminds me that im not a neurotic over anxious mother who has caused her child to not want to toilet train. Where do they dig these professionals up from???????

Re the private OT,ive had a look on the web but cant see anything,does anyone have a link to a site for private OT,s? Thanks jen

thanks for that info jsmum ill definately have a look at that. This is the confusing thing,DD is under the Consulatnt Psychiatrist who is asessing her to see if she has an ASD, she is very experienced and "eventually" gave DS his dx of PDD, she has referred DD to clinical psychology to see if they can help us with DDs toileting. This clinical psych is very very young,and i think only just qualified cos she wasnt there 2 years ago when we were at CAMHS for DS. I cannot believe she can simply disregard all the medical reports,CDC asessment and our private dx and what we are telling her. We have written a strong worded letter telling her we are NOT happy that she has disregarded what we are saying and we have asked to go through DD,s medical files at the next appointment,i know that wont go down well but i dont care. DD is quite bright so all the professionals are telling us and is able to mask her difficulties at school so the clinical psych has visited school they have said they dont see any socialising problems and shes now said its out parenting skills. We wont stand for that,we fought for DS and we will fight for DD to have the correct diagnosis,i just cant beleive we are having to go through it all again, if we dont get any joy from this psych then we shall ask to see the consultant psychiatrist again who is very experienced.

Thanks for the hug sooze. i dont think its her hemi thats stopping her from toileting,shes been on the toilet last week for a couple of days,we bribed her with a dora sticker chart and a new dvd,sh got her dvd and stopped,shes a clever one that one!!! we think its sensory difficulties,when shes been on the loo before we have to tuck her in with a cover/towel, she likes things being tucked around her and deep pressure. but the clinical psych wont refer her to an OT cos we "dont know" if she has sensory difficulties or not which does not make sense as surely an OT is the one who will dx it?

Hello, ive not posted on here for a while but have been lurking!!! We had a visit to CAMHS the other day regarding DD. Some of you may remember my DD who has a dx of PDD-NOS (private dx) after the CDC dx,d her with ASD and then changed their mind following a discussion with the Ed Psych. DD is still in nappies and is nearly 5, she has been seen by the Consultant Psychiatrist a number of times over the last year who felt that she was presenting with some symptoms of an ASD but that she was too "sociable" for a dx. SIGH. She said she wasnt saying definately no to an ASD but wanted us to have some help from a clnical psych with regards to her toileting difficulties. DD also has hemiparesis in her left side and is only daily medication for a sluggish bowel,she has been on this for 3 years now and understandable has not wanted to toilet train. The clinical psych went into school to observe her a couple of weeks ago and we were at CAMHS the other day. Basically she has said DD does NOT have the same difficulties as her brother who has AS and that shes a very bright lovely girl with lots of positive attributes and if we can just get her toileting difficulties sorted the future is looking good. She queried why we use visual timetables for her, we replied thats because she likes to know things in advance,she said yes but she is very socialble and we said her being very bright means she is able to mask her difficulties at school but that we get the meltdowns over trivial things such as a child looking at her a certain way,or she doesnt like a certain girls hair or because she is trying to get the other children to stop talking when the teacher is and they are ignoring her. Anyway her advice is to play with her more,to give her special time and let her direct the play,to which we replied we DO play a lot with her she isnt ignored at all,she said yes well i have to ask myself what she is getting from the attention over her toileting difficulties. we were understandably not impressed and we have written a letter to her saying how disappointed we are that after all the assessments DD has had and that the jury is still out from the Head of CAMHS as to whether she has an ASD or not she can just blame it on us not giving her enough attention. feeling a bit downhearted really,although i know its a load of codswollop because after everything we went through with DS who spent 2 years out of school and us fighting 3 tribunals and CAMHS to dx him (which they did in the end) they are again treating us this way. Sorry for the long message just needed to offload and i know people on here understand,feeling a bit about it. thanks for reading x

oh and the dx of hemi is wrong as well apparantly cos "she can walk and climb you know"

last week R,s school informed us that her nursery hadnt been in touch to tell them about her. a meeting has now hastily been arranged for this friday. R,s SEN are hemiplegia,bowel and bladder incontinence,and currently undergoing assessment for ASD with CAMHS. Nursery do not accept that she displays any symptoms of an ASD neither does their Ed Psych, we lost the tribunal in May where we were hoping to get her some support for school. so the SENCO is going and maybe the head of the nursery and i just know they are going to contradict everything that we say about R, and i will have to keep my cool. but i want to get my point across about R and her difficulties, i was thinking of making a book for them in september of her likes and dislikes etc,but ill probably be made out to be an over anxious parent. god its so hard this, the nursery are like the cat that got the cream since we lost the tribunal, i have purposely not been going to pick her up or drop her off thus avoiding the senco who delights in picking at the slightest thing to cause disagreements. has anyone got any tips for me on friday. thanks

thanks flora we did at first ignore her and the fly but her screams got louder and louder and the ignoring wasnt working, but i will try it again if thats what worked for you. thanks jen x

DD has a phobia of flys which seems to be getting worse,she screams the place down when she sees one, outside or inside, there was one on the outside of the car window the other day and she screamed so much we had to pull over and i had to get it off the window. today there was one in the house, DH got the spray out but couldnt catch it!!!! she screamed and screamed, eventually we calmed her down by wrapping her up in a large towel with her hands and arms/legs underneath and lying next to me, but then she wouldnt take her arms out of the towel to eat her dinner and i had to give it to her like a baby. CAMHS consultant is coming in 3 weeks to see her but in the meantime i was wondering if anyone has any suggestions on what we can do, i cant wrap her up in a towel for hours on end each day!!!! TIA

Hello to everyone, been having a few weeks rest, and recovering from the flu which im convinced was brought on by the stresses of the last few months. Well today we received a letter from the SEN Assessment Manager, she sent us the copy of the report that the Ed Psych carried out on DS last month-she went in to do a cognitive assessment on him at the independent schools request as the ed psych who assessed him for his statement couldnt do it cos he was too anxious. Under Background info it states that DS was dx,d with an ASD by an independent psych and that the consultant psych said he scored too low for a dx of an ASD. well this is tosh cos the independent psych dx,d him as having AS and the consultant psych dx,d him with PDD. Then she says she will be using the cognitive assessment to amend and update his statement. so ive written a letter asking her to amend the background info to the correct dx,s and also told her we consider it inappropriate to amend DS statement at this time as that should be done at the annual statement review. they have also asked us to meet with the sen manager and the ed psych to discuss the report-(my complaint letter must have worked then !!!) totally totally know what they are up to, they are looking for ANY excuse to pull DS out of that school and back into mainstream, his school know it as well and told me they will fight tooth and nail for him to stay. but an IQ doesnt mean he would cope ok in a mainstream setting they have to take everything else into consideration, his high anxiety etc. oh well here we go again, at least this time im ready for them and know most of their tricks,!!!!!!!!

hello i have M who is 11 and has AS and R who is 4 and has hemiplegia,PDD-NOS and emotional/behavioural difficutlies. they go from hugging each other, to R crying for M cos she,s missing him then it swings the complete other way. R will kick and hit M, she can make him cry very easily, she will shout at him if he tries to talk to me or DH she,s extremely possesive over me and DH and doesnt like him having any attention. M understandbly gets upset but then he also provokes R. M imitates a lot of R,s behaviour when you would think it the other way round. its extremely hard work and we are going to ask the CAMHS psych for advice next time we see her.

im not sure if she,s even on school action/plus cos at the tribunal the panel asked the senco did she think dd was on school action/plus and she said yes cos theres been outside involvement, he said shes got broader medical needs. at some point am going to have to get together with lea/school to discuss her, there is an evening in a couple of weeks for parents and we are invited to make an appointment for children with extra needs then, so ill have a chat with the school. i know exactly whats going to happen in september, its going to be a nightmare to get her in, she hasnt gone in this morning, she refused to eat and was biting her hands saying no nursery i hate nursery, shes having an operation on thursday grommits in and tonsils/adenoids out. she has to stay off for 2 weeks and then that means theres only a month left, part of me thinks just let her stay at home and have an early summer and prepare her for school. it hasnt helped that my next door neighbour told me yesterday that she walked past the nursery last week, there were a group of children standing around a child who was lay on the floor crying, my neighbour said she went over and stared at the teachrs who were all stood there talking and doing nothing, one of them saw her and went over to the child and said get up now come on and play. we have complained before that dd has come home crying saying a boy was picking on her but our concerns have been rubbished.

thanks for all your supportive messages. i feel so much more positive today, i was crying most of yesterday. i read your post jsmum to dave and he agreed, at least we have shown we are a force to be reckoned with and that any hint of dd not coping at school we will be on their backs asking for an asessment. the school she,s going to is a very good school, i got really good vibes from it, the headteacher was happy to speak to me (i just walked in and asked for him) and spent half an hour talking about dd, (he told me to push for a statement) and then he told us to bring her in for a look round, that was before xmas, she spent the whole time with her coat over her head refusing to look at or interact with her teacher. there are other children with ASD,s there, i know someone who is an lSA there and she said they will be really good with her. what upsets me most of all is she,s so tiny (only just gone into age 2-3 clothes) and vulnerable and still in nappies, i worry that she,s going to get bullied and she wont say anything. i need to get on to the school this week and ask for a meeting to see what they are prepared to offer if anything.

im absolutely gutted. i think i knew when the tribunal started that they had already made their mind up. the lea played a very good/dirty game. since last tuesday we have written to the head of the lea asking for the ed psych to be removed from working with both our children as we feel the respect and confidence that we should have is no longer there, she has gone into nursery on 4 seperate occasions and not attempted to speak to us and has poo-poohed all our concerns. she turned up at the tribunal and gave a verbal report,she had gone into nursery the previous thursday and observed/asessed dd and not spoke to us or explained her findings. we feel we need a new fresh start. the panel say in their report that : "it is clear from the parents evidence that many of their concerns arise from a lack of understanding of the professional reports and that improved communication,particularly with regard to the significance of dd,s test results would be likely to assist them" perhaps had we not been dismissed and ignored in the first place there would not have been a need for a hearing. they also mention the CDC,s asessment in 2006 and our independent psychs concerns that dd is on the spectrum, that has been denied and ignored by school and the ed psych and we have been continually told that we are over anxious, but we know we are not. im hoping that there will be a meeting now with us and the school and the lea to see what will happen, dd is still incontinent and has emotional difficulties. we proved that the lea/school had lied on many counts in the tribunal but that has been ignored.

we knew we had on the day. the LEA were able to lie/convince the panel that dd has no significant SEN that cannot be met from their resources. feeling very and not sure where to go from here.

when i was a teenager at school, i couldnt have cared less about how i looked, fitting in with the crowd just did not bother me. im not as bad now, but i do care how i look when i go out apart from if im in a depressed stage then i couldnt give a monkeys. im not a follower of fashion,never have been, it doesnt interest me one bit, growing up i was very confused as to why all the girls needed to look like madonna or cyndi lauper (showing my age here!) and i didnt care less about the latest pop groups. i wouldnt agree that you cant be AS if you care about your appearance cos i could be that a girl with AS does care about her appearance but not to the same level as say a girl who is NT.

yes totally agree. the ed psych hasnt contacted us by phone or letter (i know its only 2 days) and i left a message with the school who said they would tell her to contact us. apparantly her report goes straight to the lea and we have to wait for them to give us a copy. have already put in a complaint about her boss the principal ed psych who on numerous occasions observed/asessed dd at nursrey, didnt speak to us and sent the report (unsigned) into nursery before we had a chance to look at it. we have asked for her to be removed from working with dd as we have no confidence or respect for her as she has repeatedly ignored us and not let us have any imput into her observations/asessment. would appear that this one is doing the same. im banging my head against the wall with the lea ed psychs and not sure what i can do about it, ive taken it to the highest person, the chief exec.

LEA Ed psych visited ds in school on weds to do a full cognitive asessment as they hadnt managed to do one when they asessed him for his statement as he was too anxious. Head teacher of independent school asked for it as DS is a bright boy and they wanted to check they were teaching him properly. he is on target for level 5,s in his sats despite being out for 2 years. Today his key worker phoned me and during the conversation mentioned that they may be looking towards a mainstream place. i said WHAT! he said dont worry it wont happen, and if they do make noises we will call a meeting, they will only be looking at his academic ability and they have to take into consideration his high anxiety,emotional vulnerability and sensory difficulties, what are they doing to do make him have another 2 years out of school because he wont make it into mainstream secondary. so i said well i know that but this is the LEA we are talking about. he said lets just wait and see. oh no i sincerely hope not.

hmm i was very confused the other day at the sendist tribunal. the chair said they could only consider a stat asess for a child that had not been making progress on SA+ and some children do very well and stay on SA+. id always thought if a child had been on SA+ for a while and even if things stayed the same then a statement was necessary. dd has been on SA+ since Jan 2006 and still was up til last october when we put the request for stat assess in and then suddenly she lost her place with ICAN and was no longer on SA+ or SA. i sincerely hope the panel see what has happened but got the feeling they were more for the LEA cos as one of them put, its not as if she,s been ignored she,s had help for a long time.