is anyone around???

[bonkerz]

need help writing my letter of complaint about why i feel DS deserves a 2nd opinion.
have long list of problems picked up in report from CAMHS of traits i feel point towards autistic spectrum problems. Need help finding evidence on net which back up my claims.can anyone help?

The Priory thing sounds like a really good idea. You could sneak him in under the 'needs assessing' guise, and then make the point (if things go well) that he should stay there because things are going well!

Good thinking - and presumably the class sizes at Priory are 10 or below as advised.

The priory school is amazing and obviously very expensive! The children there have full time one on one support and access to other proffessionals including psychs etc. It i sopen from 8am till 6pm and so after school activities are intergrated and brilliant to help with DSs social skills. the classes at the one near us are currently at 5 pupil per class as they are just starting out. Even at full capacity they never go above 10 chidlren per class. The head told me today he has recently had a child with PDD start and he is funded via LEA so i know it can be done. Also in the last 3 months they have had 2 children with aspergers start and they are part funded by LEA although parents are still fighting to get full funding. Problem is in our area there is a special school that takes children with ASD and MLD/SLD and also severly disabled children BUT this particular school is not suitable for DS and the Priory school is the only one that would meet all DSS needs. Its either priory or the unit at the MS.

well been an interesting and confusing day.
Rang the school with unit attached to ask his thoughts on accepting DS, he said after long consideration he would struggle to meet DSs needs in the MS and is informing LEA of that. So then i rang LEA and caseworker said she is at a loss with finding DS a placement. She says there are some options in coventry and northampton but places are hard to get as they are out of county.
Also rang CAMHS today to find out whats happening re 2nd opinion. Lead clinician agrees that current diagnosis does not explain all DSs problems and has agreed to look at all the evidence himself personnally and is going to contact school and PRU and Ed Psych and then invite me in for cinsultation. He agreed that many of DSs traits are ASD related but felt more evidence was needed before he could comfortably issue and further DX. I pointed out that is what i want too and would love to not have to label my son but situations mean a DX is essential to find placement and support for DS.

sounds like they are definitely taking you seriously at lst - giving you the top man to personally review. Haven't they heard the word "spectrum" - ie your DS might be low on the autistic spectrum in some areas and high on others ?

I think that is the biggest issue with DS TBH that he doesnt really fit comfortably into the triad of impairment that i keep getting told about. DS has OK communication skills really but most of this is learned. He wont say hello or goodbye unless prompted, he wont initiate conversation BUT if on a one to one basis with him he can talk to you but only about things he wants to talk about IYKWIM. Eye contact is something he will do but cannot hold for any length of time without prompting. he DID have to have speach therepy between aged 3 and 4 beacuse he had trouble forming words and even now uses baby talk alot of the time ie 'me do that' and 'all by me own' which surely isnt normal for a boy of nearly 8!

I think your ds's communication sounds so similar to J's. He's incredibly articulate, but communication isn't just about words - it's about how you use words, when you use words, non-verbal communication etc. That was the bit of the triad that I didn't think he met at all, but then he scored almost full marks on that section of the ADOS!

I think that you should push for an ADOS. The subtleties of the scoring/ observation criteria are really interesting and pick up things in complex kids like ours that wouldn't be observed in everyday life.

Hi givemesleep, Yeah i mentioned connors scale and ADOS test today! Ive decided the best way forward is for me to TELL CAHMS what is wrong with DS and then tell them its up to them to prove me wrong!!!!
Am feeling shit again about yet agin having to wait for things to be done! Got a long weekend stuck indoors as DH is working and i just cant go out with DD and DS as cannot ensure their safety!!! Feel trapped!

well now i expect to have DLA stopped whilst i fight them again! Just spent 3 hours filling out the form to ask DLA to be looked at as Ed Psych and PEad reckons DS should get high mobility and care. Fingers crossed!

DLA = eeeeeeeeeeeeeeeeeeevil.

Waiting to hear on J's appeal too. We have also been told should be eligible for high rate for both...only high for care at the mo, so fingers crossed.

I know givemesleep and i really did have to think hard before putting in the forms becasue of everything you have been through and i cant afford to lose money! Heres hoping they actually read the forms! Im not that bothered about going up to higher rate for both TBH but aslong as i still get the med/low we get now its not a problem! Would be good to get high mobility though especially as it looks like DS will need taking to and from school soon and it will eman over 2 hours travelling a day was thinking a car would be handy!

well it looks like the PRU unit has had enough of Ds too as they have just sent hiom home for kicking. Im so cross because that is a behaviour DS has displayed on numerous times but has never been sent home from PRu for it. Im also cross beacuse the head has just sat telling DS that it was down to DS to make the right choices and that Head feels DS has just been allowed to do these things and that DS would cope in MS if MS MADE him make the right choices. head said he didnt care what was wrong with DS that kicking was not acceptable which i agreed with BUT then he went on to say that DS was just spoilt and needed to be taught harsh lessons. Ims o cross

how very shitty of the head of PRU bonkers . sounds like he is clueless about ASD/ASD traits.

He kept saying that DSs problem is when someone says NO....well excuse me but i thought that was what ODD was about!!!! He spoke like ODD was a made up disorder for children who were spoilt!

Im stuck now as to what im supposed to do with DS. He is currently in his room with no TV etc. I have made him write a letter of apology for kicking BUT it doesnt explain why he kicked etc he has literally written sorry alot and just that he was angry and he doesnt know and didnt know that he had kicked her. The head said that DS delibeartely walked across the room to kick this person But DS is adament he didnt. Either way he needs telling BUt i feel like im flogginf a dead horse by insisting on him telling me why he was angry and why he kicked!

I think this is the biggest problem with DS and when the ASD is noticeable because he really has no idea what has happeend and can give me no reason for his anger.

Im gonna leave him in his room, he will be in bed by 6 and no telly in morning but is this enough or am i being to soft on him and spoiling him?
I dont know what to do!

I don't think you're being too soft or too hard - just right! He has got to learn not to behave like that, as has my J, but people have to accept that it IS harder for them.

thanks for the posts, Ive arranged for the home support to come and visit tomorrow. Ive also talked with parent partnership who said it should be logged as an official exclusion as they rang me at 12.20 (before pm registration) to collect him. So now it seems my DS is being excluded from a unit which takes children who have been permanently excluded! Wonderful! Mind oyu it does strentghen the case with CAMHS cos their main argument was DS was coping and functioning fine in the PRU unit!!!! Well thats that theory blown out of the water i just need them to back it up in writing now.
I suppose im back to dreading the phone ringing and not being able to go too far from home again! What joy!!

Bonkerz, you really are having a hard time! ((hugs))
I think parents have more power to 'punish' a child effectively than schools, and thats why they send them home! Ds has kicked before at school - so why did he do it again? If it had been dealt with effectively at school each time the behaviour should diminish not continue. I am not saying it entirely the schools fault (although as a special unit they should have better skill...) but blaiming the parent is not helpful - enlisting the parents help might be.
Parents usually know what will motivate their child - to learn control or better ways,- bed early and no tv works well for our ds too! Rant over!!
Ps do they praise ds when he calms himself, pulls a punch, deals with his anger?

They have very wacky reward systems which means DS has to build up good days to get things like horse riding or bowling. Problem is DS reacts better to reward systems that are immediate ie extra 10 minutes TV on the day he has been good , that sort of thing. The problem with the reward system at the unit is they expect DS to be good for 5 consequtive days before he gets a reward and that is impossible for DS to do even with the best intentions. Also problem is they do rewards on tuesday so if DS good for Wed,thurs,fri but bad on mon he doesnt get to go horse riding etc so DS has no motivation at all to get the reward! He has been ONCE in 4 months because it was his first week there!

It appears not only were they struggling with alot of children yesterday but they also had 2 staff off sick. The biggest thing i got out of DS was that his own support worker was off yesterday and thats why he was working with this other lady....at no point was this mentioned to me and at no point was this taken into consideration for his behaviour.
Im really trying not to make excuses for DS, kicking is wrong and DS is being punished BUT i cant help thinking it was not all his fault and that the unit have dealt with it very badly.
Ds left for unit this morning promising to be good but was very tearful.

Ds also needs immediate rewards for motivation. We have a system with ds home school book. If he has a good day he gets a small reward (shiny coin his present obsession!), if he does certain undesirable things he looses 10 mins tv for each offence. School struggled with the undesirable stuff till we got involved. It has worked well! School also give stickers for good work, and are generous with praise.
Do you think a similar system might help your ds? Could they set up a earn back system - ie help the teacher put things away to say sorry for minor misdemeanors - this might help with his distress as well.
It sounds like the unit did not deal well with ds yesturday!

family liason person from unit has just been, she is lovely and very supportive of things i say and ive discussed DS with her before and how the smallest things can trigger extreme behaviours in DS. She said she will go back to unit and ask head to clarify yesterday but from what she knows it was a very difficult day yesterday at the unit with staff absences and other volatile children and it seemed the best thing for DS because he is the most vulnerable, was for him to come home. She did say she felt it was more about his safety rather than his behaviour. I did ask her if head had some knowledge of ODD that i didnt becasue he seemed to think DS was in complete control of himself and was just spoilt to which she said that head was under alot of pressure yesterday and wouldnt have made me fell like that deliberately BUT that they only really deal with children with ADHD not spectrum disorders.

I can understand sending a vunerable child home when they are shortstaffed and that is causing difficulties for the child. In MS my son was kept at home on the last day of term when children are left to (unstructured) play. It was not counted as exclusion. (But I still felt guilty!)
Its a pity it was not explained that way to you!
I hope Ds had a better day today and you feel happier!

Well im now struggling to get hold of CAMHS again after the lead clinician promised he would ring me back last week! Have rang 4 times today and the last time i was told that the doc didnt currently have an office or any way of conatcting him!!!! IM really p##ssed off about all this. The panel meet on Monday to discuss DS and i need to find out what CAMHS are going to do. What shocks me even more is i thought they would be more helpful consdiering this is a formal complaint!
On a plus side i had a reply from my MP today about the email i sent regarding DS having trouble getting into a specialist school despite having all the 'needs' that it would meet. He is going to make further enquiries and get back to me. Maybe i should email him and point out the obvious comspiricy theory that is happening in Leicestershire ie
LEA/County Council need Child to have diagnosis to access support, CAMHS dont like labelling and diagnosing children, CAMHS work in partnership with County Council!!! Maybe if i throw in a line about blanket policies and descrimination it might get taken seriously what do you all think????????

Good news about the reply from the MP I hope he turns out to be helpful. It sounds like CAMHS are giving you the run around though

yes they certainly are and no phone call and its 5pm so doubt it will happen today now. Am so cross with them. Will ring again at 8.30 in morning and tell them i will be turning up to sit in office at 12pm unless i have had a call. DH home tomorrow so can sit there all afternoon!!!!

ok well we may be getting somewhere although im STILL waiting for the phone to ring!
Rang CAMHS at 8.30 am this morning and demanded i had a phonecall from lead clinician before 12pm OR i would be in the reception by 12.30 with a journalist from the local paper! AT 9.20 am my mobile rang and it was the Lead clinician!!! SHOCK!!!!!

He started by apologising for not ringing and giving me some long winded excuse which i shot down in flames! He then went onto say he had looked at DSs file and talked AGAIN at lentgh with the psych and they had agreed that DS needed to be treated as if he was on the Autsitic Spectrum! He felt this was enough to ewnsure DS gets the help he needs.
I ofcourse put him straight about the LEAs policy of no diagnosis no support and he genuinaly sounded shocked and said he knew it had been an issue in the past but he thought it had been sorted and that now the LEA where better at providing without the label!
He said he was going to contact the SENA case worker and discuss the need for a diagnosis and would contact me again this afternoon! He said if indeed DS did need a diagnosis he would come to my home this evening and collect the mountain of paperwork i have so he can back up a DX for DS.
Well its 6pm and no phone call or starnger on my doorstep yet! I hope he is working late otherwise all hell will break loose tomorrow!!!!

So if DS needs to be treated as if on the Autistic Spectrum does that mean he is autisitc/has autistic traits??????