CAMHS know whats up with DS but wont tell me........

[bonkerz]

So rang psych today to find out how meeting with CAHMS went on Friday and he is on leave for 2 weeks. No problem i thought i will still get results and hopefully diagnosis BUT NO>>>>>>>apparently im not allowed to knopw what CAMHS have said about DS until psych gets back off leave! So CAMHS KNOW if they agree about diagnosis for my son BUT wont tell me. Im fuming and upset and scared! HAve been told it will be ATLEAST 2 weeks for report of findings is looked at by psych and then possibly another 2 weeks before psych can see us as he is fully booked til MArch!!
Had to also chase up LEA today as no statement has arrived and case worker is going to hand deliver by Friday, Noone has visited DS at PRU for nearly 4 weeks now and DS is becoming a noghtmare at home and PRU because he still thinks he is going back to MS after half term and when i told him he wasnt he started to scream that noone wants him.

Im at my witts end. I want to know whats wrong with my DS because if CAMHS say he is 'normal' i dont know how i will react because it is obvious I am a terrible parent if he is 'narmal!

Sorry for the rant im just feeling really low right now.

well today has been hard wrok and very emotional. I have a huge stress headache and my eyes are stinging.
DS teacher from PRU rang me this morning and said she felt in no way was DS able to return to mainstream. She said they were trying to break the cycle of behaviour pattern and he could not start reintergration until he showed consistant acceptable behaviour!!!!!!!! In return i told her this was a completely unreasonable request considering DSs issues and that i felt she was trying to fit a circular peg into a square hole!!!!! What followed in this conversation was me detailing examples of why i have lost faith in PRU unit and why i felt DS is being set up to fail.
I attended a support group and talked through everything with some parent carsr council ladies and also Parent partnership and i think we are going to appeal the statement on the basis that DS should attend a spcial school or unit that will meet academic and behavioural needs. If i do this we will have 4 months to gather the evidence we need and that gives us more time to see if MS will be able to meet DSs needs.
Spoke with case wroker at SENA also today
and told her i will be appealing against the mainstream setting being able to meet DSs needs and she was not happy. Said she felt DS would be fine at MS but retracted that statement once i reminded her that head of MS had told her in no uncertain terms that they cannot cope with DS and that 5 adults in the school had expressed their concerncs about DS returning and also reminded her about the parental complaints that had been submitted regarding DS.
Spoke with head at MS who has agreed to sort out Ds going to the MS on a friday morning so he will have contact with them and she has also agreed to put in writing the concerns she has and others have about DS returning and has agreed that if in the next 8 weeks she cannot see a way forward with DS she herself will file for appeal on the basis of mainstream not being suitable setting fer DS. She is also along with the case worker going to ring CAMHS and try to hurry them along. Also managed to talk to someone on the board of CAMHS who is going to a meeting there nect week and has said she will try and get an interim basic report for me.
A few positives but a very emotional day.
I also have someone coming on Friday who may be able to offer some support for ME! Hoorah!!
Am now going to open a bottle of wine and drink myself into oblivion!

god what a day for you. sorry that the PRU teacher has been so negative. hopefully if you and school are similarly minded re:appealing the statement that will make it easier to get him a more appropriate statement.

Sounds like you have earned that drink!!

thanks guys. Still dont know if appealing is the right thing to do but as noone is certain that MS is right for DS and also becasue we are still waiting for CAMHS report i feel it would be silly to agree to a statement and tie ourselves to a MS school. Atleast by appealing it will be easier to change the school titled on the statement if things dont go as planned. IYKWIM.

Oh darling, what a nightmare.

Nothing constructive to add, but have a {{{hug}}} (you know I don't give those out willy-nilly!).

sounds like a nightmare bonkerz, really hope you get that support!

it is that this is the kind of fight you have on your hands to get the right place for your ds.

Hey bonkerz. Makes sense to me! If he'd been ticking along in mainstream and coped at the PRU, fair enough, but, as he hasn't, it's hard to see how the LEA can argue that mainstream can meet his needs.

Great about the CAMHS thing. Who's coming on Friday?

thanks again guys.
Feel really lonely in RL. Although DH is trying to be supportive he has not really got a clue about how it all works and isnt as 'dynamic and pro active' (his words not mine) as i am. When i write down what we have decided to do it all makes perfect logical sense and i dont understand why LEA dont see it like that BUT then thats me being naive isnt it!!!!!!!!!!!
A family support worker from student support is coming to see me on Friday, She works in conjunction with PRU unit and was contacted by PRU teacher. I think possibly the PRU teacher has noticed i am an unstable jibbering wreck!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Next step socail services surely!

thanks again guys.
Feel really lonely in RL. Although DH is trying to be supportive he has not really got a clue about how it all works and isnt as 'dynamic and pro active' (his words not mine) as i am. When i write down what we have decided to do it all makes perfect logical sense and i dont understand why LEA dont see it like that BUT then thats me being naive isnt it!!!!!!!!!!!
A family support worker from student support is coming to see me on Friday, She works in conjunction with PRU unit and was contacted by PRU teacher. I think possibly the PRU teacher has noticed i am an unstable jibbering wreck!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! Next step socail services surely!

I have someone like that. She's OK, but, not having met J, she doesn't really get the reality of what he's like. Still, sometimes talking things through with someone helps to get it clearer in your head!

What you're doing does make sense. One of the behaviour support service teachers who's worked with J recently pointed out that, if he can't cope in mainstream, having time out and then going back would just be making him return to the scene of a failure. And I really understood that. So I think you're right to pursue an appropriate placement - he can always go back to mainstream later, but now wouldn't seem to be the time.

Just be good to know what they're dxing - I think the LEA will cave if he gets the ASD dx. It's hard to argue against that. Even without the dx, he clearly has ASD traits, so they might still accept your choice of school as the closest thing to appropriate.

x

Givemesleep, i dont know what i would do without You!!!!

(EVERYONE HAS BEEN AMAZING ON MUMSNET)

I do think this appeal is the right route to go down. We can cancel at any point BUT this seems like the easier option as opposed to trying to get the school on statement changed in 6 months time when DS is back in MS and being excluded again!!!!
I do feel like DS is being set up to fail and that kills me inside. The head at MS said today she felt DS needed a little bit of MS, a little bit of unit and a little bit of PRU......sounds perfect but we dont live in lala land!

Ahhh cheers! It is nice to have someone understand (and our boys were clearly separated at birth...shame you aren't nearer Manchester - we could put them in a playcentre together to be hyper together/ at a park while we watch and eat chips!)

Hmmmm...the shared placement thing is one worth considering though, actually. It's not that unusual. Our local EBD primary has a shared placement for laods of its children with the local mainstream, and it apparently works well. You could ask the LEA to put on his statement a shared placement between the unit and the mainstream (NOT the PRU - PRUs are not meant to be named on statements really) with a review in April, say.

They are more likely to go for a mix and then you have both schools on the statement. If the unit works, they'd have a job then trying to take it off again as you could prove it was meeting his needs. If they agreed that a shared placement would meet his needs, they should also do the transport.

They might go for this as a way to avoid Tribunal? I'd suggest it while also appealing (once you have the final statement).

On the other hand...I can really see why you don't want him going back to mainstream, cos it went wrong there, so why go back?

The appeal might make everyone a bit more flexible while you wait for the dx and consider your options. You won't let them let him fail (iykwim!) so don't fret pet.

Where's the crystal ball when you need it? (Oh yeah, it's on holiday with your bloody consultant )

would be worth a trip to manchester if i got to eat chips!!!! LOL

Will mention shared placement to case worker. The special autistic unit that i visited before christmas is actually attached to a MS school but you have to have a diagnosis of autism to access it. I think i may ask case worker what would happen if DS transferred to the MS school and if once DS started displaying all the traits of an autistic child (which in reality would be within 3-5 weeks of transfer) whether the MS would actually start using the unit and staff to help DS. So technically he would have what he needs which is MS for academic and social with full time support BUT also the specialist unit with specially trained staff for his more challenging days! That to me sounds like the logical answer but its never that easy!

Am now going to ring cinsultant to get that crystal ball back! LMAO

Good luck Bonkerz. Your thoughts on a split placement sound sensible.
As you may remember I asked for a split placement for ds, as it seemed a logical solution for him - to continue to mix with ms children but get the specialist support of mld/asd. It was turned down but we got ft in the mld school (an itegrated mld/asd junior unit so the asd trates not full dx was not so troublesome!). It was turned down on the basis it would be confusing for him (different uniforms/ towns etc) and that the mld could better meet his needs. (I think a split placement would have been more costly!) I am pleased with the ft shift to mld.
Hope you get good support, and that report soon!

well am feeling bit better today. Support worker came out, lovely lady! Listened to all my concerns and told me that teacher at PRU is very stobborn and apparently they had a meeting about DS on MOnday where everyone else had copme to the conclusion that they actually couldnt take DS any further and that his behaviours were due to a deeper issue (no shit sherlock!) BUT his teacher doesnt like to quit and she wants to keep DS a bit longer to see if she can break him! Talk about stubborn!!! Support worker is going to go back to PRU and mention my concerns and explain to teacher that 2 MS and parents cant break DS and she will get more and more frustrated!!
SW(support worker) also agreed that the MS school with attached unit is a good route to take and is going to contact MS school to see what would happen if DS attended there and then needed the unit but didnt have a diagnosis. So all positives and she told me off for not ringing her sooner!

Got letter from psych today offering appointment for 18th march to discuss results of assessment and he then rang and said if report comes through sooner he will ring me and fit me in.

All good news! Brilliant!

some light at the end of a VERY long tunnel....maybe???
Just been in contact with school that has the unit attached to discuss possibility of DS attending MS or the unit. DS will need to have it recorded medically in the awaited report that he has autistic traits and that these traits are severe enough to demand 1:1 support. Obviously we know DS needs 1:1 so we are simply looking for the word AUTISTIC on his report! If we dont get that label for DS the head thinks he could accomaodate DS in the MS and honour the statement easily. He says he already has 2 children who are based in the mainstream who he has managed to get part time access to the unit based solely on the childs needs BUT after hearing DSs descriptionhe feels DS is HFA and would benefit from unit placement with alot of access to MS which would be better for DS1.Either way he has said he has 5 places becomeing available in August at the unit and is willing to work with me to request placement there from LEA. Thankfully he remembered me from when i visited the unit.

So we now have to wait till 18th march whicch seems like an eternity!! I am going to talk to Case worker and explain that i would like to name this MS on DSs statement and see if she will make me appeal to get this or not.

Havent told DS or his current MS though. Do you think i should?

Its been a long hard struggle for you but this sounds hopeful! My fingers are (still) crossed for you!
Do you think it would be better to wait for more certainty before you talk to ds, or would he prefer to involved from the start?

i just mentioned tonight to DS about another school. I asked him if i could find a school where there some other children who were special like him and found school a tricky place if he would like to visit it and see if he likes it. He seemed ok but you can never tell with DS if he is actually absorbing what you are saying or not IYKWIM.
Rang case worker who said i wont need to appeal if the report says ASD as she will agree to place the school and unit on the statement and she is going to talk to the MS side of the school to see if it would be more suitable than his current MS school if we dont get a label!

going to visit the school and unit tomorrow again to pick the brains of the head. Any questions i should ask about the MS and the children who attend it with diagnosis?????

oh good, that head of the school with the unit sounds keen to make things work with your DS whichever way the report goes. Sounds very positive.

Qs - what sort of systems do they have for stressed pupils in terms of sensory room/quiet area etc - so they can manage their anger etc in a constructive way. Staff training in dealing with/defusing meltdowns??

Will he have the same TA or will there be lots of different ones?

Will there be somewhere he can go to at break and lunch times?

How many other pupils do they have with a similar diagnosis?

Anything to do with food/pe changing times/etc that is relevant to your particular child.

Sounds very positive - glad you've got some better news at last. Let us know how it goes and also how you think it compares to the Priory place you looked round.

All the best.

thanks guys all brill questions. I suppose i need to be quite intense with the questions as this really does have to be the final move my son makes! At 7 this will be his 3rd mainstream!

so the school have cancelled on me! Will have to re arrange when DH can make it!!!