Finally heard from CAHMS is this normal procedure?

[IcedCoffeeQueen]

Well after our long wait and referral from the pead who thinks ds 7 has ADHD and lots of sensory needs, she said ds would have a full assessment and see OT etc I expected an appointment to go along to CAHMS. I've just received a letter to say the community psychiatric nurse is coming to the house next week to 'help you with the problems you discussed' the leaflet says they like to meet the whole family and that ds should know what we are worried about and the person will want to discuss it with them, ds doesn't know he is any different to anyone else! is this normal procedure?

Of course they will want to meet the child too. It's normal procedure. If you want assessment for ADHD it involves assessment of the child, so at some point you are going to need to have a conversation with your DS about it. Best to start with a few simple words with him now about it. How else did you expect them to be able to do it?

Ds never saw CAMHS for dxing, he saw them for anxiety. However I remember our first appointment letter asking to meet the whole family. I was told CAMHS is a 'family service' and their purpose is to help the whole family to cope.

I just told them thanks, but the appointment is for ds, we as a family are coping well with his anxiety, its just ds who isn't coping.

I was told that the psychiatrists etc never make home visits. I had no idea they had psychiatric nurses. Although the dxing procedures might be different.

It seems to be different everywhere. DS2 was referred to CAMHS by his paed but the referral was refused as they don't 'do' ASD/ADHD unless there are mental health issues.

He was then referred to the neurodevelopmental clinic and has been visited at home by the specialist ADHD nurse who will also observe him in school. There was no mention of the whole family. Diagnosis is based on behaviour consistency in two different settings (home and school) and has got bugger all to do with 'family'.

Not really sure what I expected I suppose I thought they would speak to me and then observe ds rather than specifically ask him what he thought was wrong and what we were worried about, I personally don't agree he has adhd I think his sensory seeking behaviours mimic adhd and they he has problems socially, with a few asd traits. We have been trying to get ds assessed since he was 3 its a long time coming and the thought of a psychiatric nurse scares me if im honest.

Snap - I don't think that DS2 has ADHD either for the same reasons

Do you have to go through CAMHS in your area? Noone has attempted to ask Ds2 what he thinks the problem is. What's the point? He does not recognise a problem and doesn't have the ability to formulate a bio/psycho/social explanation being 7 an' all.

When ds received his dx of ASD from the CDC, the whole family wasn't interviewed. Ds wasn't asked his views on anything. He was just assessed, using assessment tools and observations.

School were asked for their views, I was asked for mine.

As far as I know CAHMS is the only way you can go in this area, pead said she would recommend to a CAHMS a full assessment for ADHD and look at the sensory issues, she said she herself works with the team and she is the ADHD specialist she also said the OT with the team specialised in asd, I just don't see why seeing a psychiatric nurse will be helpful, I think I will call them tomorrow and see if ds really needs to be here as he should be at school,. I didn't expect them to come to my home at all tbh im feeling abit unnerved by that like they will be judging us.

Iced, I felt very much judged by CAMHS and as if I had to constantly be on the ball with examples of how I react and deal with ds's behaviours. Like I was being analysed along with ds!

However as i said ds wasnt been seen for dxing, but for anxiety, so i suppose they had to assess whether i was reinforcing his behaviour etc. They proved very helpful in the end.

If paed and OT are part of the CAMHS assessment team, this sounds better. More a multi approach, rather than just CAMHS.

Ds definitely has anxiety too I think because of the sensory issues they sort of fuel each other. He cannot cope at all with being unwell the slightest headache, sore throat etc. you would think he was being slaughtered, he has a bit of a cold just now and has broke down in school twice and i've had to collect him, he's currently rocking on the sofa but will not communicate with me, I don't think he even knows what bothers him half the time, one minute he's telling me its school and its too noisy the next its not that, one minute the world is going to collapse if I make him go to a swimming lesson, the next he wants to try it then back to no he cant possibly I cant keep up! he's 7 and a half why is it so hard he's my son I should be able to understand him :(

Maybe now you have the CAMHS appointment, you could chase up the OT appointment, seeing as it is a multi team approach, the two would be better running concurrently, rather than months apart?

I wouldn't know where to start all I got was a copied in letter from paed to CAHMS saying that she recommended assessment for ADHD and now this letter from CAHMS, do I speak to them or try and get back in touch with paed, im going to phone CAHMS anyway and see if they need to speak to ds next week, if ds lets me go and make a call that is, he keeps begging me not to leave the room and leave him which is MOST unlike him! this is a boy who has never shown any separation anxiety in his life!

What's going on at school? DS2 has had tons of SALT assessment, TA has been trained to deliver provision, he is visited by SALT at least termly. He has been assessed by the OT and is visited at school termly. He has also been seen and assessed by EP. He is on SA+ and currently gets about 12 hours support each week. The school requested all these. SALT referred to paed.

Could be all or any of ADHD or ASD or cognitively gifted/dual exceptionality (98th NVR and 99.3rd VR)

Main presentation at school is that he has 'significant' difficulty with listening and attention - at times zero engagement, doesn't respond to name etc.

Maybe because he is feeling a bit under the weather, its about the only time ds wants attention from me!

If it was paed who said she/he was making referral to OT, I would phone paed and ask firstly that referral has been made (should be a copy of the system and secretary could tell you) and secondly can you have name and number of OT so you can chase it up.

CAMHS will probably say that ds needs to be there, however you could say that you would prefer he wasn't on this occasion so you can talk openly about him, without him having to sit there and listen. Ive done that plenty of times.

Unless she wants to assess or observe him there and then.

No help at school at all they largely don't see any problems and say he is fine there. He had OT at 5 referred from nursery who put wobble cushion etc in place and discharged him, he seen SALT for a stammer for over a year and was discharged a few months ago via letter no meeting with me he is much better but still stammers. He attended nurture for primary 1 and was on an IEP he progressed massively in this time, then was taken off it completely and back to class, p2 he was mostly ok with the OT aids but we still noticed lots of odd behaviour at home. P3 teacher didn't even know he was supposed to have cushion etc says he doesn't need them so has nothing now, she says he has been 100% fine at school but he's broke down every single night at home teacher is confused by this apparently. He has broke down twice in school in the last fortnight yes he's been under the weather but only slightly yet cannot cope with feeling unwell so just sits and sobs school have sent him home as they are unable to communicate with him when he's like that.

I despair at some schools I really do, they are sending him home because they/he cannot cope and then claiming everything is fine and he is happy!

Ds's previous schools were very much like this, apparently ds was running around happily, farting rainbows. In reality, he was anxious, self harming and having suicidal thoughts due to his confusion about the school environment. To many schools 'happy' and 'fine' translate to he is not disruptive and doesn't cause US any problems.

Many kids can hold it together in school or bottle it up, then meltdown at home, its quite common. School are saying fine, you and your ds are saying/demonstrating otherwise and they need to listen to you/ds. They need to take into account both your perceptions and your ds's of school.

I'm not familiar with your background but I am having some trouble working out why ADHD is suspected? In my area the paed sends questionnaires to the home and the school (mine uses SNAP) and will only make a referral for further assessment if they are positive in both settings. Is it suspected ADD without the hyperactivity? DS1 was an internaliser and the school never believed there was a problem (ASD, SPD, APD, ADD, SpLD, anxiety, tics all diagnosed privately and then confirmed by LA assessment on run-up to tribunal). Claw is right, unfortunately, DS2 is good natured but does not give a toss! I think he is a doddle compared to DS1 but he is a monumental pita for staff - hence the masses of assessment. Karmic revenge.

DS1's SNAP forms were positive for home but negative for school hence no referral. DS2's were negative for home but positive for school and so were reissued for me to get right this time. I never completed the home one - I wasn't able to bring myself to lie - but DS2 was referred on the strength of teachers concerns.

Well some history I always had concerns about ds as a toddler I thought he had autism, he didn't point, tip toe walked, needed routine would break down if I didn't say something in the correct order, lined things up, didn't role play lots of sensory issues was slow to talk etc, then when he started talking more he was very echolalic for a long time followed by a stammer SALT said this is because he cant keep calm enough to speak clearly, then upon starting nursery constant fidgeting, facials tics, hand flapping and shouting out he was referred to OT who said sensory issues and trouble crossing midline, he would likely outgrow upon starting school. He has outgrown a lot of behaviours and since starting school still struggled with turn taking, fidgeting and talking, getting in others personal space, occasionally getting upset when something new happened in class open day for example.

Outside the home we found the same problems, cant take ds anywhere he has to run, skip, hop, understands road danger but doesn't put it into practice wanders in a daze, touches everything he sees in shops, re-arranges items etc. Lots of anxiety worries about everything what are we doing now and then, how long is it going to take LOTS of why and how questions, major health anxiety, few interests watches same programme thousands of times although very recently he's started to let up on this a bit. Will role play now but always very samey and IMO much younger than his age, will play shop over and over for example. Very social but doesn't seem to have any friends desperately wants them though copies other kids wants to like what they like, do what they do just to be the same, will be inappropriate with familiar people climbing on them trying to lick them. Lots more but that's the jist of it

Pead thinks all the above is due to ADHD for example she asked if he like to show me affection and give cuddles. I told her since ds2 had been born yes but before that no and if you asked him for a cuddle before he would give you his head or turn his back to you - pead says this is because his ADHD means to doesn't want to waste time cuddles he wants to keep moving

She said its normal for ADHD children to like structure and routine and he fits the profile very well

She couldn't explain why although he likes to hop and skip outside he complains quickly of being tired and sits on the floor refusing to move or cries and tantrums until we take him home where to he also cries because he didn't want to go home that's clearly normal of a 7.6 year old

Schools ASD form was negative too, with all 'typical' and 'no difficulties', as was the OT sensory profile school filled out.

I was lucky enough to already have specialist ASD SALT report, from previous borough, who strongly suggested ASD and recommended further assessment.

I was also lucky that indi OT, had observed ds in school and done some formal assessments and was very critical of school.

For example school claimed on the form visually 'no difficulties' when ds has a dx of an eye disorder and was currently under their visual impairment team for being unable to read from the white board! She also observed and assessed many difficulties in school, which school were just not reporting on the forms.

Which is why I think it important to have multi assessment going on concurrently, rather than months apart.

Iced paeds are just GP's who deal with children really, unless they specialise. Does this paed specialise in anything?

The turning point for us was moving boroughs, prior to this I had encountered developmental paeds who didn't have any idea about ASD, about as much as my GP who is an eyes, nose and throat specialist!

When I moved, I was referred to a paed who specialised in ASD, he was joined to the CDC and part of the multi team, who all specialised in ASD. It made such a huge difference

She said she specialises in ADHD, the letter said she is a community paed, I know we live in an area where support is really really bad we have been told this by others whose children have much more obvious difficulties who have been told there isn't a problem, we are trying desperately to move but its difficult it means giving up LA housing to go private and pay triple the rent and dh securing a job to allow this so its a difficult process

www.anst.uu.se/abduahma/Saxlemxane/Instruments/CAST/CAST.pdf

www.hailepsych.com/CMFiles/Docs/SNAP-IVTeacherParetnRatingScale.pdf

Try these.

Sorry Ice I wasn't suggesting you move borough, just that finding out what the Paed's qualifications actually are might be helpful, as finding a Paed who specialist in ASD made a huge difference to us.

No I know claw its just I know that im banging my head against a brick wall living here and I really do need to move

KeepOnKeeping - thank you had a little go at both of those, found them quite difficult to answer tbh but ds scored roughly 19 on the cast test, not sure if I worked the Connors out corrently but I think he scored 2.0 not sure how they tell the differene between adhd and sensory seeking though

So seen CAHMS finally

Have the Connors questionnaire and so do school now have to send it in, he thinks ADHD with possible ASD traits mixed in. Will be a school observation once the forms have been completed and sent back.

He said ADHD is often co morbid with other conditions and that once they get the ADHD diagnosed and medication started if the other symptoms are still there then an ASD assessment can be done but that will be way down the line apparently....