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.

[HotelChocolat]

That is rotten bonkrz (Aero here btw). The waiting is the worst thing and this won't help for sure. I haven't read about your ds. May I ask what you're thinking he'll be dx'd with? Dd has an initial appt next week and I'm getting nervous too, esp if they say she's perfectly normal!

Also, what is CAMHS? (keep seeing it, but have no idea what it is).

[bonkerz]

Child and Mental Health Service.
Everyone who has been involved with DS in the last 2 years all feel DS falls into the autistic group. Pead reckons it is ADHD but Psych said he felt issues were deeper than just ADHD. I think DS has PDD or similar (lots of other things with initials and are all very similar!)
What makes it worse is that LEA were holding out to finalise 32 hour statement to include diagnosis BUT they cant hold out that long and are finalising naming DS MS school. Problem we have is without knowing what is wrong with DS we cannot decide if MS will be good for him or if he will need a place at the local autistic unit!

[macwoozy]

What a dilemma! Even though my ds had a statement I still couldn't decide if MS or autistic unit(none that local though)was right for ds. I went for MS but fortunately he's now in their language unit. I might have got this wrong but I think we were both looking into the same school.

I'm not surprised you're feeling low right now. You've already waited too long for a diagnosis and now having to wait till March...well I'd be pretty bloody annoyed

[HotelChocolat]

I see. No wonder you're at your wits end. He needs a dx pdq! Our local autistic unit is difficult to get a place in as there is a high demand for them in this area.

I'm thinking dd is displaying ad/hd symptoms (without hyperactivity), but as she's doing okish (ie just about gaining the lowest NC approved grade), I'm afraid they might not see things how I do. Having said that, things have been seen at school without me saying anything and I had a letter recently to say they wanted to put her on a 'social use of language' programme. That tells me she says inappropriate things at school too, so I'm not imagining it or seeing something which isn't there. Our SENCO has kindly agreed to come to the appt with us, in case I miss anything, or forgt to mention something of relative importance.

[bonkerz]

I think its harder at the moment becasue the MS DS should be going to is not hiding the fact that they are apprehensive about DS going back EVEN with 32 hours support. APparently the governers and some teachers are concerned about having DS back! The PRU unit that DS has been at since DEC are now having the same problems with DS as the MS school has. The MS school has had no contact with DS for 4 weeks now which is a long time in his life and im scared for DS when he finally goes back there. If we have a dignosis i have to decide if we attempt MS with Ds even though the chances are preatty high that it wont help or do we go straight into a unit which can offer specialist help for DS.
Am just fed up with the whole thing and im tired of it all. Am finding it really hard to connect with DS at the moment becasue he is SO loud and in your face IYKWIM.

[magso]

I can only guess how frustrating this must be for you all!I can half understand why they can't give you results over the phone - or by the wrong person, but some rules seem so daft when time is of the essence.
If the statement has to be issued before you get the written reports can it be rewritten in the light of 'new evidence?' once it is availble? I remember asking this question and I think the answer was yes but I may be confusing with the draft statement! My sons' statement was reissued after 4 weeks to allow a change of school, after some other (allocation?) panel had to approve it. He had to have a statement in place to go to this panel I think. Prior to the change I insisted on a revue at 6 months which was written into the first statement (incase the school change was turned down at the first attempt). Hope this gives you some hope! Hang in there!

[HotelChocolat]

I wish I had words of wisdom for you, but it's all so new to me too, but if autism is the correct dx, and MS school is dragging it's heels about having him there, then I'd be worrying that they feel unable or worse, unwilling to give him the help he needs/deserves and he might well do better at a specialised unit.

[magso]

Sorry crossed post- I'm slow tonight! Are you expecting the statement to be finalised and come into force for after half term? Do you think the asd unit would suit your ds and do they have a place? It would seem silly (and very disruptive to a child who has been through enough already) to change ds back to ms then change again! I remember having to make decisions very quickly on the school change and it was just as well I had visited all the units in advance and knew what would suit ds best.
On a positive note life for us all is much calmer 6 months down the line from all that battling!

[TotalChaos]

Sorry that CAMHS are being so awkward about the diagnosis, is there any chance the LEA could put some pressure on for them to disclose the info. I agree with magso - that it would be bad for both of you if DS went briefly back to MS, then moved out again, rather than going straight to a specialist unit.

[bonkerz]

LEA case worker has agreed to ring CAMHS to see if a diagnosis is on the cards and has said she will ring me back tomorrow. We already know that CAMHS were thinking of writing in there 'support needed' section that they feel DS would benefit from a smaller setting than MS BUT this can only be provided in a unit and here we cant access the unit without a formal diagnosis!! Have been on phone loads today and there may be a chance another psych will talk to me tomorrow or Friday but no guarentees.
The PRU unit has in principal agreed for DS to stay on till Easter BUT this in itself causes problems as if he is going to a new school/unit then this will work but if he is going back to MS then this will not help at all! Just hate feeling that someone knows more about DS than i do!

[magso]

Keeping fingers crossed for you!

[bonkerz]

thanks guys. Im feeling so low at the minute about the whole thing.

[Aero]

How are you today Bonkerz? Any news?

Dd had her initial appt yestrday and ASD/Aspergers is suspected. I am devastated.
We won't get a dx for ages though, so I'll just have to trust them and sit it out and let school help her best way they can.

I really hope you get this sorted out soon though and get ds into whatever school/unit which will suit him best. It's awful that you have to do all this chasing up and waiting when getting his school place sorted is so crucial.

[partsky]

I took my Son to CAHMS for cognitive therapy recently. Not diagnosed but long history since 4, now 12, of School contact re "cannot make friends easily" "doesnt like being in close physical proximity with others" "not aware of others personal space" etc. Various folks involved. Community Health Doctor says "we both know there is something there", OT said to school thinks on ASD, referred for possible OCD and more confused than ever. No specific DX but told variously "may have autistic tendencies", possible OCD or flapping of hands and running up and down possible stress related. I felt as if I was creating the problem. Is it always like this. I am now a bit worried of seeking help in case I am thought of as "Munchausens". Does every parent feel this. I am trying to help my son socialise. NOw responding to long term bullying over school career by his fists, so problems there. Great at home but becoming socially isolated. Please give advice

[bonkerz]

no phone calls from anyone today and i dont feel strong enough to ring them right now cos i know i will lose the plot. got letter from PRU unit DS is at today telling me he isnt at school tomorrow which is GREAT>>>>no warning!! Am gonna leave it now tll after half term unless they phone me tomorrow.
Sorry you were gutted with DX Aero. Its so hard to come to terms with isnt it.

[bonkerz]

well i left this for 2 weeks and today had enough and rang psychiatrist to find out whatis happening.
Have now been told that it could be yet ANOTHER 4 weeks before CAMHS finalise report becasue the assessing psych is on annual leave!!! I really could sob.
I obviously got quite irate on phone as CAMHS receptionist eventually said to me....well mrs bonkerz that is the NHS for you ....and promptly put the phone down!!!!
Im so angry. Ds has had no contact from his MS school now for 4 weeks and i want to know if we have a diagnosis as im seriously considering placing him in a unit attched to a school BUT he can only access that unit with a diagnosis. The case wroker after saying she will talk weith MSschool back on 4th Feb has not bothered to contact me so she will be getting an ear bashing tomorrow, may even take a drive down there and see what she is playing at!

Sorry am feeling emotional and fed up.

[TotalChaos]

sorry the CAMHS are being so utterly unhelpful.

[bonkerz]

Its just really annoying and upsetting that they know what is wrong (if anything) with DS and they have all the answers as to what would be better for DS needs wise and they wont tell ME....Im him MUM fgs and they wont tell me!

[daisy5678]

They are being really really unhelpful aren't they. Assessing psych can sod off - when we got our 'headline' ADOS results, we only happened to get them when we did cos we'd had a regular medication review scheduled anyway with our regualr consultant, and she had the scores so of course I wanted to know the scores. The 'real' feedback was scheduled for 10 days later, with one of the other CAMHS people who was one of the official ADOS scorers. As it happened, our usual consultant was supposed to be at that, but couldn't attend as she had an emergency, so we got the feedback from a CAMHS nurse, who doesn't know me or J at all. But we just wanted to get the feedback.

It's shitty that they're making you wait. Someone else could do the feedback and then the usual psych could pick you up again when they deign to return from their long holiday!

I'm assuming you've told the CAMHS person about the need for a dx if he needs to go to a unit probably being stupid - I know you're very thorough!

Don't usually do the hugs thing, but I will make an exception as you clearly need one! rare hug

[bonkerz]

thanks givemesleep. Im still upset and really angry they wont tell me the results of assessment. this thing about assessing psych being away is bull shit becasue DS was assessed by 12 proffessionals and ALL of those professionals were at the meeting and made decision together so SURELY one of those poeple could feedback to me. Im sure its just delay tactics but i cant think why.

[daisy5678]

Yes. Of course they could, one of the 12. I don't know why they would delay; I can only think that they genuinely want your 'case manager' to feed back to you. Worth ringing and asking to speak to clinial director or equivalent - person with overall responsibility for CAMHS?

It's not like you're just being awkward. Isn't time important because you're at final stages of consultation over statement? Or have you already sent your comments off? Remind CAMHS that you will be unable to ask for change of school on the statement for 12 months after it is finalised, so it really is important that they get the time thing sorted or you will be forced to name a possibly inappropriate school.

for you. Not extra stress that you need!

[edam]

second what givemesleep said about escalating this to the big shots. Terrible way to treat you.

And if you still get no response, contact your MP - they are very helpful in terms of knocking heads together. Officials who treat the public like shit tend to jump to attention when an MP starts chasing.

[bonkerz]

I explained today as best i could about urgency for diagnosis.
I think im struggling becasue where i live in Leicestershire you cannot access ANY help for children like DS WITHOUT a diagnosis BUT in Leicester City which is where all the services such as CAMHS and Psychs are you dont need the diagnosis just recognition of the needs IYKWIM. NO ONE at CAMHS seems to fully understand that issue and i keep getting told that as long as DSs needs are noted they should be met....YES THIS IS HOW IT SHOULD BE BUT IT IS NOT LIKE THIS IN LEICESTRESHIRE and then i start again on the circle of explaining!

[daisy5678]

Yes - I think CAMHS psychiatrists try to stay out of the politics as much as possible, which is lovely, but not when it comes up against reality!

Go back to your MP, Bonkerz, because I'm right about the statement timing, aren't I, and you don't want to be locked into mainstream for the full year it will take until you can officially ask for a change in placement.

Wouldn't it be lovely if as long as their needs were noted, they should be met ...did you say Lala Land or Leicester City???

How was Ds's first day back?

[bonkerz]

well no phone calls at all today from osych or case worker! SURPIRSE SURPRISE!!
I have actually left a message for the case wroker stating that UNLESS i get some answers about DS being reintergrated ASAP i am going to push her to find a specialist school and will apply for an appeal with regards the statement! The Psych was YET AGAIN unavailable!!!!!!!
I did actually bite the bullet and rang the MS school though. Head was unavailable so i had a long chat with the receptionist who does all funding and arrangements for DS. I told her very bluntly that i felt school was letting DS down and that i wanted him OUT of the PRU by Easter and back in MS and that if this was not possible i would appreciate it if they could express to case wroker that MS is NOT the setting DS needs. I told her that DS had been abandoned by the school and asked her whos responsibility it was (MS or PRU) to ensure contact and continuity for DS. She had no answers and was very sypathetic but thats not what i want! Have asked her to get head to ring CAMHS to find out whats going on and also asked case wroker to ring them again too. I feel helpless. Am now at a point where i know everyone is fed up of me and is avoiding my call BUT i dont feel i can sit back and wait for them.