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Got Camhs referral - yay!!! Please help with what information to present......

37 replies

youarewinning · 16/06/2013 22:44

I feel I've lost all sense of normality Wink

DS is 8yo, year 4.

I had to fight for the referral, school felt EP not right as even though he's on SA thats for literacy problems and his main ones are social.
They suggested get GP to refer as may be quicker, GP referred to Community Developmental pead, they turned down referral and so GP referred to Camhs. They also refused referral and were just about to refer back to GP for the EP when I spoke to them. (Yes, sadly you do need to fight).
I said I knew EP wasn't the correct service (questioned why and I explained it wasn't a school issue and I work in education so know EP role). I was told to email her (the receptionist) said she'd get clinician to look at it and review.

Get the feeling they were trying to placate me - however the clinician looked at my brief email, accepted referral immediately and have given us an appointment in 10 weeks. Grin

Now, what I'm struggling with is things that many children may struggle with, behaviours other DC's may show etc that do show DS's social anxieties, but that may be developmental. I don't want to go in with an exaggerated looking list that makes them think I'm a loon. Grin

For example:

DS never really had an afternoon nap from a young age - about 15 months. He just could not relax into a nap, especially when there was noise outside/ within nursery etc. He did however sleep well at night. He would sleep during the day if he was still (not much!) and just dropped off. Usually any daytime napping was done in car/pushchair - once asleep he would be for up to 4 hours! During his toddler years I use to describe him as 'tazmanian devil on speed!'

DS would point blank refuse to sit within a group on the carpet, in the hall. He would be quite forceful and argumentative Blush about not coming closer to the group. The more his teacher tried to 'encourage him to sit in the middle' the more he'd misbehave.

DS did not, and still cannot really walk along a road. He has to be a train, car, lorry, make all the noises, be 2 steps ahead or behind you. Just walking, calmly, talking is beyond him. He will now hold my hand for short periods before he's jiggering around and making noises. The same with sitting still - he just cannot sit still in silence. He's never been naughty and won't run off, but constantly needs to be reminded to walk iyswim?

His social difficulties are easy to explain - no empathy, lack of ability to communicate through simple 2 way conversation, very organised in play - cannot just play tag, throw a ball without exhausting all the rules and possible variations of the rules and what to do in that circumstance. Quite often doesn't say anything if he cannot answer a question, cannot start a conversation unless it's about minecraft! and very much imitates his peers behaviour and what they say. Doesn't really get humour and if he finds something funny, or more if someone laughs at something he does he repeats it until its no longer funny - and can't understand why its no longer amusing. Meddles continuosly in what other children are doing in an attempt to make friends/ join in. Doesn't pick up on the fact he's annoying them, they aren't responding to him etc. There's been a few incidents lately where DS has bitten children. Blush Violence is just not like him and because he's struggling so much socially he now has a seperate break with a chosen buddy in the courtyard or library.

So what should I be listing for Camhs? Is it a list of milstones DS reached early/late? (walked early/ spoke late) or is it actually things I think show what his difficulties are?

Will they ask me specific questions based on the information I emailed? I get the feeling I get 1 shot at outlining my case and getting support for DS and as he's getting more and more anxious, tearful and generally not sleeping as well I know I HAVE to get it right.

Any support, advice, information will be most grateful right now. You'd thinking finally getting a referral I'd be releived but I just feel more lost. Sad

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youarewinning · 17/06/2013 19:32

.

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tacal · 17/06/2013 20:12

Well done on fighting for your ds's referral to be accepted! You must be relieved. Sorry, I can not give you any advice or information as my ds is still on the waiting list for his first appointment. I have been focusing more on his current behaviour and difficulties rather than his milestones. But I should probably make a note of the milestones and early behaviour.

I do worry about not being prepared and feeling that I did not do my best to get support for my ds.

I will watch this thread with interest as I am sure you will get some good advice.

Good luck x

youarewinning · 17/06/2013 20:38

Hi tacal We have not had a first appointment yet either. That's in September. I feel pressured to get what I tell them right to paint a picture of DS. They obviously feel he needs to be seen as the email changed their minds.

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youarewinning · 17/06/2013 20:41

I know what you feel about the guilt - but I figure we've accepted our children as they are iyswim?

join me here - there' nothing wrong with sharing advice and a thread as we are both going through the same thing. Smile

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armani · 17/06/2013 21:18

I would keep a diary of his behaviours over a few weeks and take that along, as this alone speaks volumes. Also a list of your concerns, as if you are anything like me your mind will go blank once you are finally in there! Good luck :)

blueeyedmonster · 17/06/2013 21:43

I have our first appointment on monday so can let you know what they have asked about if you like.

I am taking a list of 'concerns' that we have about him/things he does. Also i've been keeping a record of why/what happened before he lashes out at us or himself for the last month or so and i'll take that with me too.

Also the questionaires they sent out we have to take those in too.

youarewinning · 18/06/2013 06:51

blueeyed that would be great.
Good luck for appointment.

The problem I have is that DS doesn't have a lit of behaviours as such - he has bitten children at school and manage a few hours at cub camp before having to come home because he cannot cope socially and did hurt other children. But most of the time its his social awkwardness - he then withdraws more than lashing out - but I guess that is a behaviour....doh!!!!

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AttilaTheMeerkat · 18/06/2013 07:08

I would outline again to CAMHS all the information you have put in your initial post.

His needs are certainly not being met in school are they?.

BTW have you applied for DLA on his behalf?. Worth considering.

Well done for obtaining a referral from CAMHS. Shame on them for refusing to see you initially.

Once CAMHS get involved your DS should be moved up to SA plus. IS DS known to the SENCO in school?. I would be speaking to this person as a matter of course particularly once CAMHS have seen your DS.

Why was the referral to the CDC turned down?. (Probably waiting lists being miles long).

As you have already discovered, you are his best - and only - advocate here.

ThreeBeeOneGee · 18/06/2013 07:10

We went through paediatrician rather than CAMHS, but I took a typed list of our main concerns about DS2. It ended up being a full A4 page (single spaced). It may well have made me look like a loon, but wasn't exaggerated at all, and we got a referral to the centre for complex neurodevelopmental conditions, who gave a diagnosis.

blueeyedmonster · 18/06/2013 11:51

Thanks and i'll update next week for you.

My list for ds (5) is about 4 pages long (single spaced too). I've also got on there the fact he can't seem to sit at a table for a meal and if he does he's always banging something or screeching (another one), No volume control, personal space he seems to have a lack of knowledge about. Having to play his cd player on the loudest setting.Things like that. The way he interacts. It's not all about the violent streak.

Definately add about his social awkwardness!

Ineedmorepatience · 18/06/2013 13:28

Hi blue, my Dd3 was assessed and diagnosed by camhs in my area 2 years ago.

My diary of her unusual behaviours was the main thing that helped us and the camhs staff took it very seriously, unlike other proffs who had seen her.

Aside of the diagnosis we found them very supportive and they helped DP and I to talk openly about her issues.

Good luck Smile

youarewinning · 18/06/2013 17:12

I think the initial refusal by CDC and Camhs was because of what the GP wrote. Maybe I didn't explain it well but I think her referral concentrated mostly on his school anxieties and alo she asked lots of quetions about my personal circumstances. (LP, DS doesn't see his dad, no real contact as abroad etc)

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youarewinning · 18/06/2013 17:18

blueeyed is your DS my DS? Grin

He also cannot relax in silence - he starts making silly noises etc - he's 8yo now so learning to control it for a few minutes - but even on the loo he does it!!!

Yes, DS should go onto SA+ but the system is changing so they won't be SA and SA+ (Early intervention has already gone!). I have asked about seeing SENCO, he does have an IEP etc but the teacher drags her heals over EVERYTHING - prefering to report things to me and say DS is refusing to tell the truth. This, my DS, who will give a second by second account of anything that happens, including timings and will admit his involvement - he's just so matter of fact!

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youarewinning · 18/06/2013 17:19

Loony list may well be llooooooooooooooonnnnnnnnnnnnggggggggg Grin

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tacal · 18/06/2013 18:02

My list is going to be very long too!! I keep writing a list then doing another one. I have about 3 or 4 lists and need to try get one final list done. Then just add anything important that occurs between now and the appointment. I wish I was more organised about it.

youarewinning · 18/06/2013 20:07

Maybe we should copy and pate our lists here? Grin

Then we can add to it! I'm sure they'll be similar!

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blueeyedmonster · 18/06/2013 20:13

Thank you Ineed I'm hoping we have a similar experience to you Smile

They sure sound similar youare!! My list is long. I only got to go through 2 thirds of a page with the docs when she said it was enough for the referral too!! She then too the whole lot to write the referral. Whatever she picked did good as they accepted us first time and I know a lot of people get turned away here first time!

FriskyHenderson · 18/06/2013 20:17

CAMHS also wanted to know dates re speech and language, so when DC started walking/talking and how.

youarewinning · 18/06/2013 21:02

Oh frisky that should be fun....... my list re walking/talking

DS was an early baby physically - preferring to be upright and watching everything from 3 months. Sat at 5 months. Walked at 10 months.
Just always wandering/ running in circles/ running full stop!
However - still really cannot negotiate a knife and fork correctly!

DS first word at 18 months - light!! Pretty much said light only for 2 months and then added there!!! Around 2 began to speak in 2-3 word sentences but mostly informative. "look, light"

Began talking in sentences just before he turned 3. Wasn't particulary interested in having a conversation - would talk to himself and toys more than other people!

Still very much talks at people, has no awareness of volume control, sounds very aggressive when he talks, can appear quite rude as often is unresponsive to people but ask the right question and he doesn't shut up! Can talk and talk without realising people aren't listening/ have switched off. Talks about his favourite things above all else and doesn't get others don't actually care or share the same feelings about these things!
Uses some very grown up words in his speaking. Very echolaic to his peers in social situations - eg if they say something that gets a laugh he'll keep using it as his response of choice.

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blueeyedmonster · 24/06/2013 19:57

As promised I am updating you on our CAMHS visit today.

Well for an initial choice appointment it left me feeling really rather rubbish. She asked no background, nothing I thought she'd need to.

In fact all she asked that seemed slightly relevant was, "so where do you want to begin", "how does he sleep" and "does he have any issues with food". Also have you done any parenting courses and have you kept a behaviour diary. She never looked at the paperwork I gave her and just spoke to me like I didn't know what I was talking about. I'm not impressed! I can't see they'll help on the back of that.

youarewinning · 24/06/2013 20:07

Oh no Sad Have they given you a next appointment? Sorry it was so shit. If your not happy email them and explain your reasons why.

I was told they would ask about parenting courses - I'm a county trainer for a behavioural programme so I'm hoping they accept that's why I haven't!

Better start a behavioural diary then? I wish they'd tell you this stuff before the appointment. Thanks for the update and info - although I know that doesn't help you, Sad

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blueeyedmonster · 24/06/2013 20:10

I have no idea. She said she'd call me when she'd spoken to his teacher, salt and our early intervention lady. Also her colleague. Then she'd call and tell me what will happen.

She said to expect to be sent on a parenting course. Didn't seem phased that I am trained in behaviour management from work (SLD school) or seem to feel that is relevant.

youarewinning · 24/06/2013 20:14

Ha - are you TT trained? I'm a trainer! Also work in SLD ed and think thats why I thought some of DS obvious quirks were quite normal Blush

Grin
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blueeyedmonster · 24/06/2013 20:19

Lol snap that's why I thought my Ds' were too!

Yep and the one that was before TT (can't for the life of me remember what it was called now but it was a few days training!)

blueeyedmonster · 24/06/2013 20:26

Skip trained (I pretty sure I've spelt that wrong) that was it!