Initial assessment with CAMHS, what to expect?

[tooearlymustdache]

Hi there

This is my 1st venture into this section, am a long-time lurker and constant contributor of rubbish on talk boards.

Our 4.4yr old DD is due an initial appt with CAMH after DH and I went to our GP to ask for support/help with some of her behaviour.
She has spectacular meltdowns, (as most DCs do) but also has some rather more unusual traits too, eg she sniffs things repetitively, licks certain objects for up to a half an hour if allowed too and other stuff.

I asked for help, not because I think she has any specific condition, but because her 'behaviours' are becoming all-consuming, and I'm starting to wonder if they are compulsive or learnt. Are we starting to punish her for something she can't help? All the usual parent guilt stuff, but our GP immediately picked up on some things and without question said he would make a referral to CAMHs.

Anyway, what can I expect from this 1st session? The GP made a few notes which I think he might pass on, but can anyone give me any pointers in how to get the most out of this meeting?

TIA

That's a really good idea, thanks cat64

I've just read your post out to DH and we're going to start a diary from tomorrow and take that to the session.

Will they want to see us all together, do you think?
Is there usually opportunity to talk out of ear-shot of the child?
I've been getting quite upset (crying etc) when talking about what's been going on, I don't want her to think this is about me being sad.
Or is that a bit weird of me to think like that?

The first appointments are always the hardest - although none of them are easy. Even if you have suspected something's not quite right, it doesn't make it any easier to make that first step to admitting to anyone else that there may be a problem. The combination of wanting to find out what is going on, combined with not wanting there to be a problem is very hard work.

The first meeting will probably be them taking a history from you, so the diary idea is a good one. Certainly having something written down will help what will probably be quiet an emotional experience. I can only go on what happened with me, but we had a good talk with the paed. She chatted to DS and asked a few questions and then we spoke together alone while DS played. At the end I got my mum to take DS out so I could finish up with the paed.

Yes you can all go together. I found it a huge help the first time with the psych to have DH there. He seemed more able to take over when I got upset about what was being said and some of the things that we discussed beforehand he was good at putting across.

I remember before things got started with DS that DH and I used to have conversations along the lines of "we have to do something about his behaviour". Having a diagnosis of what the problem actually is has been hugely helpful as I've been able to look into other ways of handling what is going on. Understanding is half the problem.

I can really empathise with where you are at the moment. I've cried buckets over the last year. The other piece of advice I can give you is to not make any appointments to do stuff on the day you go or the day after to give yourself chance to digest what is going on.

You know how to contact me. Just let me know if you ever want to chat about this off line again.

Thanks nenevomito

You have hit the nail on the head about the conversations DH and I have been having about 'having to do something'.

I'm swinging between feeling as if we've 'dobbed' DD in and then that there is nothing a-miss and we are shit parents after all. Whichever it is, we need some guidance for sure.

Hi tooearly

Made it here - dh is feeding the dcs so I have escaped for five minutes peace.

I'm not sure how much help I can be though, my ds was referred via a paediatrician, so we've never had any CAMHS involvement.

I would second what others have said about taking some notes with you. We typed up a history of ds1 before our first appointment and in our case the paed read the whole thing (and there were pages of it) before calling us in. He said it really helped and we were referred straight on to the dedicated ASD Assessment Unit from there - although not all areas have this type of set up, so we were very lucky really.

Basically, I started from before he was born, pregnancy complications (he was growth restricted and we had an unexplained episode of high blood pressure). Followed by the birth and then what he was like at each stage of his life and then finished up with details of why were concerned enough to seek help and what our concerns were.

We've since given the updated version of that report to lots of different professionals, who've all found it really useful, so its well worth doing, as it means you aren't constantly having to repeat yourself at every appointment, iyswim.

As for feeling like you've dobbed your dd in and then convincing yourself there's nothing wrong, its all totally normal - we've all been through it, but try not to torture yourself. What you have actually done is just ask the question. Either way, if there is a problem, you have done the right thing and will have helped your dd to access the help and support she needs. If they say they have no concerns, there's no harm done, you did the right thing and asked the question. Either way, you aren't being anything other than good parents, who clearly care a lot about their dd and want the best for her.

thanks moosemama

i would have thanked you last night but DH and i ended up having a huge bust-up over this - he's really struggling with this too, he's really stuck feeling we're being asked to 'lay it on thick' to get any help.

I'm sort of gathering that basically we'll have around an hour to 'put our case' and then they will make an assessment from there - is that correct?

Sorry to hear you and dh are struggling so much.

I wouldn't say you need to lay it on thick, just tell it like it is, but don't hold back on the reality of it and how its affecting your family. They can't make an assessment if they don't know the facts.

From what I've heard, its unlikely they'll be making any assessments at your first appointment, other than to decide whether its something they think they can help with. Don't quote me on that though, others who've been through CAMHS themselves are far better placed than me to advise.

It may be an idea as well to make some film footage of your DD in her home environment to show these people.

Do not attend this appt on your own; you both need to attend this and DH can also ask and answer questions. Both of you need to present a united front; it is NOT either of your faults that DD is like this and it is certainly not down to anything you both did or did not do!.

My guess is as well that a diagnosis if it is forthcoming will take some months to arrive at. Do you at heart think that DD could be somewhere on ths autistic spectrum?.

Make notes too as to what she is like re things like eye contact, eating, sleeping, play, what she is like socially with other family members and friends.

You do to some extent have to develop both a thick skin and the ability to short loudly to get help because it is not readily forthcoming. You have both absolutely not dobbed DD in re a referral to CAMHS; if she is on the autistic spectrum then early intervention is vitally important both for home and at school.

BTW does she attend preschool and if so have they reported any concerns to you?.

Also keep posting here!!!.

Hi Attila

The video footage is an idea I'd not thought of, and is a very good one. I have some of her that could be very useful - thank you for that.

I don't want to make any 'guesses' as to what any DX will be, but she definitely is hypersensitive (undiagnosed allergies, we have epi-pens), obsessive and manic wrt to physical pain. She has recently had a graze on her knee that was the trigger for a 3hr meltdown...

She's just started Reception, her class teacher says she settled down well, in that she doesn't cry or give him any grief, but she doesn't instigate any interaction with other children. She will introduce herself formally (like at an adults dinner party but does this to all children. She then considers them her friend.

I will keep posting, thanks again for the kind words. I know we are doing this for the very best of reasons.

I've finally got the say-so to phone to make the appt for the assessment, I'm doing it right now.

I'm blubbing like a stream and DH is here (taken the morning off work) but I still feel scared , I'm only making the frigging appt for ffs!

Here goes

Hi tooearly,

Re your comment:-
"She's just started Reception, her class teacher says she settled down well, in that she doesn't cry or give him any grief, but she doesn't instigate any interaction with other children"

I would also mention the above to CAMHS as well. I think the teacher is missing something fundamental here (because teachers are not trained fully in the whole gamut of SEN anyway) and the above does not mean she is actually settling in. It sounds like she is going to slip through the net because she is going unnoticed and not having her additional needs there met.

It may be a step too far for you as yet to consider but I would also start looking at the Statementing process with regards to your DD www.ipsea.org.uk is a good place to start. You may also want to now look into applying for DLA as well.

Never forget that you are her best - and only - advocate here.

Keep posting here, do let us know how you get on.

(apologies for name change mid-thread as well)

Some ASD children fit well into school in the sense that they are wellbehaved, because they like the structure (my son did) and relate well to adults. My son's school did not express any concerns until he was in Year 3, because that was when the social problems became apparent.

Sometimes problems get worse as the child gets older so "laying it on thick" is worth it. I found we adapted to a lot of ds2's behaviour and didn't notice quite how odd it was, until it started impacting on his social relationships as he got older.

It can take a while for a picture to emerge. What we saw as imaginative play was in fact a form of stimming. He played nicely with his twin sister so we assumed he had no problem with communication.

You don't need to feel the slightest bit guilty for labelling him, if it helps him or you with any problems you may be experiencing parenting him. Tantrums especially are so much more manageable if you can see the triggers, and avoid them, and learn how to best defuse them once they have started, rather than just feeling it is BAD behaviour.

Hi all

We've managed to get an appt for next week, I'm still in shock a bit, very teary so forgive and indulge me as I ramble a while?

What you said about her slipping under the radar, Atilla, has really hit home and has triggered a lot of other things to mention.
She always seems popular with other children, she had a whole year at pre-school, and has been going to dance lessons for 18mths, there are some children who have also been to all 3 with her at the same time, but she doesn't know their names. I think I said up thread, that she always introduces herself, but aside from this plays alongside children, or as a part of an organised game with adults and children.
And she's never cried when being left - DS2 gave me real grief with seperation anxiety when he was younger, I was releived that DD didn't cry, but on reflection DH and I agree that she never batted an eyelid, and still doesn't.

I'd never looked up 'stimming' before, swanriver and think we've been making a bit of a joke of what is her main 'stim' whenever she's tired, and mostly when she's sniffing her blankies, she makes mouth movements, as if she is sucking a dummy. Considering she's never had a dummy, or sucked her thumb, we thought this was funny! She also has a default set of small toys, that only her and DH can play with, she treats them like old friends.

Thanks for the hand-holding babyheave and everyone else

That all sounds familiar tooearly DS's stim is making mmmm mmmm mmm noises when he eats. He also has tics when he's stressed and will make noises when walking about. We just accepted it as being him and its only when its pointed out that its a sign that you step back and go "oh! So it is." I spent a lot of time at the beginning like this as the penny dropped over and over again.

It is a shock isn't it. Its like peering out with new eyes at all of the things you've just accepted as being part and parcel of your dd and it can be frightening. Will hold your hand all the way.

Well, what a morning!

Our appt went really well, in the fact that the person we saw let us just talk and talk. And then we talked, and then some more!

She made loads of notes, asked us some questions, and even cried along with me. We've left our notes with her, (at her request) we didn't need them at all in the session, as it all came flooding out.

We're going for another session in 2 weeks time, and she's already mentioned the consultant appt as she's wants to get the ball rolling before DD experiences anything else negative in school. But has recommended looking at Tony Attwoods research and books - already she suspects we're looking at high-functioning ASD/Aspergers.

Thanks for all the replies here, i think i'll be around a lot more

Hi tooearly -glad the appt went well and its good that they are taking it seriously and getting the ball rolling.

Do you have a Kindle? You can download the Tony Attwood book and I've read it from cover to cover. Will catch up offboard x