Well - saw CAHMS today for the first time - you lot might be chucking me out

[hereidrawtheline]

Hiya we saw CAHMS today for the first time. The man was a child psychologist I think. We were there about an hour and a half.

He hasnt said anything concrete yet he said he wants to see DS some more for various sessions before he commits himself BUT he does not think DS has any SN.

He thinks - ready yourselves - he thinks it is all pretty much down to attachment issues. Between me and DS. He agrees there is a lot of anxiety, control, tantrums etc but he thinks it all likely stems from attachment anxiety and birth trauma. Even things like using his fist to feed himself he said could indicate that because it is more like human contact i.e. me. Anxiety etc is stemming from a traumatic birth, such as him absorbing in infancy that he hurt me. And then I had PND. And he suspects it is all anxiety and attachment problems. Also of course because he now just wants to sleep with me in my bed naked. And when he was a baby he would only ever sleep on mine or DH's chest he was never able to lie in a bed he screamed blue murder. And his comfort item is my tshirt that he's had since he was a few weeks old. And so on and so on.

He did say he isnt ruling out definitely anything like Aspergers just yet but he is not that way inclined. It was attachment attachment attachment.

So... I dont know. I feel really strange. Some of it makes sense I mean I know he and I are extremely close to each other and of course I well remember the issues he had as a baby and the birth and how much he wants me now, pretty much exclusively. I said to him I didnt think that would account for all the meltdowns but he said it might but we will look into it more. Of course some part of this reinforces my feeling it is actually my fault.

He wants to see DS several times starting some time in July for sessions where he plays and talks more with him.

So... what do you think.

[daisy5678]

I had to do a parenting course when J first saw the paed aged 2. He was a bit apologetic cos he knew that I actually ran some parenting courses for parents of teenagers, but I totally saw the point that that's a good place to start. He said it would be useful if only for the group support type thing.

It actually wasn't; it was shit stuff like 'spend time with your son' and 'praise your son' which I already knew and did! But I could see why that's what's recommended first in most cases.

He then referred us to CAMHS when J was 3, but CAMHS wouldn't accept the referral till 5 . After many attempts to stab me, they finally saw him at 4, dx'd ADHD and then tried to discharge us as I didn't want to medicate him.

Got re-referred when things had got so bad, at 5, that I wanted to try meds. New psych spent an hour with us, said she was sure he had autism too, did lots of interviews with me about him and then we started the long (well, only 6 months in J's case and I know that's relatively short, but it seemed long!) wait for the ADOS.

This consultant psychiatrist is amazing and has been the best professional involved with us - and we've had an awful lot of them! She's helped with every aspect of our lives - DLA, school reviews, working individually with me on how to manage J's increasingly violent behaviour. I wish she'd been wrong about the autism, but apart from that, I'm so glad we're involved with CAMHS, and I guess that does cloud my view a bit. That's why I think you're being sensible, HIDTL - of course parents must speak out if they're treated badly and if drs aren't being helpful or professional. But assuming that a whole profession are obstructive and incompetent doesn't help anyone,IMO. It just increases the divide between 'us' and 'them', and we have to work together for the children's sake.

IMO!

[hereidrawtheline]

oh I have no intention of burning my bridges with CAHMS and will of course eagerly take DS to his next appointment. At this point I dont have reason to believe that it wont work out for us so it would be contrary to our best interests to not see CAHMS. If anything happens I strongly disagree with I'll address that at the time.

[minxofmancunia]

soory heridrawtheline I don't want this to turn into unhelpful CAMHs bashing/defence either. it's not why you posted but in my defence I have not made "sweeping generalisations" about parents, I am one! God knows I've got my flaws like everyone else!

I've been very careful to state SOME parents in my main 2 posts certainly not all, I've also been at pains to endeavour that we try to look at strengths as wells as difficulties and also that sometimes parents are too harsh on themselves, we often have to try to high-light how WELL they are coping.

In CAMHS you see an unnaturally high percentage of children with problems compared to the general population FACT, it follows therefore that you see an unnaturally high proportion of families with problems compared to the general population, that's just how it is! I'm sorry to put it bluntly but SOMETIMES children's problems stem from their family experiences. To deny that would be deluded.

60% of our district referrals are for problem behaviour. the other 40% is made up of ASD/ADHD, eating disorders, mood disorders, tourettes, deliberate self harm, anxiety disorders such as OCD and very rarely psychosis.

The NICE guidelines (not me) recommend a parenting course as a first line intervention prior to any individual work, it's not a criticism of parents it's supposed to be supportive. About 50% of the parents of children with behaviour probs take up the course, the rest refuse and either disengage or do a variety of other things. The interventions for the other 40% of children (mood disoredrs etc) fequently aren't carried out effectively due to the sheer weight of behavioural referrals. not me whinging or being unprofessional, a fact.

Herei really hoping if you do carry on seeing the psychologist you get some answres soon. If not then please request to see a different clinician and they may be eble to get you and your family what you need.

[hereidrawtheline]

DS is 3 in one month. We flagged up the problems ourselves nearly a year ago but preschool are now reporting them as well, he has attended since February.

[nikos]

Herei- I don't want your thread to get taken over with bashing CAMHS.Can I ask how old your ds is (can't see on thread but apologies if Imissed it)? I ask because our route to diagnosis was: problems picked up at pre school, referral by them for specialist speech and language therapy assessment, shortly after ASD dx by paed. CAMHS only involved in ADOS and initially for behaviour but as so useless we declined any further involvement.
This dx route was very thorough and quite speedy. If your ds is about to start preschool, this mightbea good route to go down i.e. preschool setting start the whole referral process going.

[nikos]

Minx-it might be helpful for you to read back over the posts you have made on this thread and see how many sweeping generalisations you have made about parents. That might help you see why you have rubbed some of us up the wrong way.

[minxofmancunia]

Thank you givememoresleep you've said it so much better than I could and you're so right, I'm afraid too many of the parents who access our service absolve themselves of any responsibility for their childrens behaviour and then bully us into "sorting it".

pipinjo your suggestion that I get clinical sv was rude and unneccessary, so we can never vent or express our concenr and dissatisfaction with the frustrations of our jobs, teachers, sw, gp etc. do ot on mn all the time WITH GOOD REASON, I was trying to out some context round it. I think the overgeneralised sweeping comments on here about an entire service ie CAMHS required a bit of context and maybe some of the posters who've slagged off an entire very hard working service may see what we have to deal with in our roles. Of course I'm going to be defensive when I know myself and my colleagues work so bloody hard, who wouldn't?

What i and other more sensible postres probably would like to do is help the OP with her predicament, it sounds hugely distresisng for her and I think some of the practical suggestions made on here are excellent.

CAMHS workers, teachers, hvs and other child health professionals see the dark side of parenting and family life, that's just how it is. This doesn't apply to the OP, she's a loving concerened parent looking for support.

[hereidrawtheline]

thanks givemesleep, brilliantly written post.

It is such an emotive issue. For us parents it feels as if our very souls are being examined and for the professionals they have perhaps a more ethical question of responsibility for a child's future.

wassup I did do a "I'm the boss" thing last night. He was waking all night feverish and upset but very angry. Waking up hitting us etc and I wanted him to take nuerofen and he didnt want to, he usually quite likes it so I felt he was just being very combative as everything we were attempting he was striking out at us. So I actually gave it to him by force. I gently held his arms and DH put it in his mouth. He swallowed it then started spitting at us as if to spit it out. But then within about 10 seconds he was happy as a clam and then slept. So I was pleased I made that decision.

[daisy5678]

I think people have been a bit harsh on minxofmancunia and I can see why she felt the need to defend her profession - I feel it too when all teachers are labelled as mean/ lazy/ whatever.I think that CAMHS workers, like any profession, are made up of a mixture of good, excellent and bad - but we can't generalise about all of them!

HIDTL, I'm sorry that there wasn't more clarity as a result of the appointment, but it's great that the doctor will see ds more and investigate a little deeper.

I think that people slating the psych in this case is a bit OTT. Why would every child with possible SN have a full multi-disciplinary assessment? That can't be the way it works, or the system would collapse. The way it seems to work is that there's an initial appointment, where some initial impressions will be discussed. The guy didn't say no SN. He said that he thinks there's no SN. That's his first impression, just like J's psych's first impression was that he was autistic, but then had to follow that up with months of interviews/ questionnaires and then the ADOS before drawing a final conclusion.

I think it's right not to rush into a wrong dx or even a right dx unless that dx is being withheld for dodgy reasons e.g. politics or funding.

The problem is that CAMHS see a lot of parents who aren't like us. By that I mean that we obviously care about our kids and think about our parenting and put our children first, or we wouldn't be on here! But there are some parents, who I see in work each day and MOMancunia clearly sees too, who want every excuse not to take responsibility (or let their kids take responsibility) for their kids' behaviour. They want an excuse. It sounds very Daily Mail, I know, and I'm sorry, but it is true.

There are other parents who want a dx for other reasons: financial, social services, to fight an exclusion... I didn't believe it until I met them when I began teaching. I thought it was something made up by people who didn't believe in SN or SEN. But it's true (and very sad).

There are other parents who become convinced that (normal) behaviour that their child shows (which is not something that their niece/ neighbour/ other dc did) must be SN, perhaps because of something they've read or heard even.

And so CAMHS have to be careful. A label sticks. When this is the right label, it's good. If not, it's very wrong, especially for the child. CAMHS have to make sure that they investigate carefully. Who are we to dx HIDTL's son? We haven't met him. Most staff at CAMHS are very well trained and experienced, so I am guessing that this doctor (who'd met him) knows more than we do, even if we are experts in ASD in our own rights.

Sometimes being a parent can cloud our judgement and the internet can make us think that we know more about SN than the doctors. IME, the doctors know more than me. I never ever guessed that J was autistic and the psychiatrist spotted it the first time she met him! So how can I say that parents know more than doctors? Well, we definitely know more about our own kids, and about life with SN. But they have to be trusted until there's a reason not to, I think, and I don't get any alarm bells ringing from the description of this appointment. Sounds like he's got a hunch and is going to investigate cautiously and with an open mind.

Good luck, HIDTL, and yes - make that SALT appointment and OT appointment via a GP referral.

[wasuup3000]

My opinion is that it is possible to have both separation anxiety and ASD.

The think with the nursery rhyme seems to be that your son has taken it literally. That therefore it must relate to him and have happened to him as he cannot grasp other peoples feelings/experiences possibly. Then to be told through the rhyme that miss muffet was scared of the spider, then he assumes that therefore he must be scared of the spider. Therefore the anxious behaviour perhaps because he doesn't completely understand what is said to him, despite being able to use those words (aside from the pronunciation difficulties you mention)?

It would be worth trying a supernanny based routine throughout the day-to have set mealtimes, set playtimes, set going out times. To see if that helps lessen the anxiety. It would need trying for about 6 weeks. Some rules like no TV after 7pm, no drinks after 7pm. If he sleeps well in your bed-can you get a bigger bed? If he feels safer sleeping at first and does it for longer that is more important than where he sleeps. Where he sleeps can be tackled when he sleeps a little better.

With anxiety, small steps are important-make only one tiny change at a time and always tell him this is our routine, this is what we are going to do, these are our house rules. Even if you are not sure if he understands just keep repeating your messages to him. At such a young age a reward chart maybe something to think about.

Pick your battles with him-if he wants a certain cup then thats no big deal for example.

Let him see that you are in control and not him-he may cry, he may scream, he may hit out but he needs to see what you say goes.

Let us know how you get on Monday!

[hereidrawtheline]

thanks for that wasuup I did not know!!! Will do that Monday, that is brilliant. The more opinions the better at this point.

[wasuup3000]

hereidrawtheline

You can self refer your son for a Salt assessment. Goto your PCT website and it should tell you how there. Some areas have drop in clinics-you don't have to go via your GP you can do it.
Think it maybe the same for the OT?

[cory]

I fully take your point, minx, and have a lot of respect for CAMHS

at the same time you need to accept that some of us have had totally unjustified accusations made against us by health professionals after insufficient examination; it can happen

in my case, it was not CAMHS but a paedicatric consultant on the children's ward who suggested that dd had been sexually abused on the sole grounds that she was complaining about severe ankle pains without anything showing up in the X-rays (she has a soft tissue disorder)

his reasoning being: no X-ray evidence=no organic cause for pain=psychosomatic disorder=trauma=sexual abuse

I am sure that as a paediatric consultant he was highly trained; that didn't stop him from disengaging his brain on this occasion

if you once have had something like that happen, then you are going to be very wary of pushing for further treatment

which is why I said to the OP that it is a very good sign that her doctor wants to see her ds over a period of time; so he is not making his mind up on a snapshot like mine did

[nikos]

I'm actually stunned how they get jobs pipinjo. And can take the money at the end of the month with a straight face. The worker I've described did a 50 mile round trip (good mileage claim I know) to give us a photocopied piece of paper she could have sent in the post. I learnt more about autism in our area within a week of ds first being sent for assessment than she could tell us.
Right, need to leave this alone now and get angry about things that matter.

[hereidrawtheline]

minx, no that has not been suggested. Nor SALT although he has a speech problem. He has a huge vocab but quite hard to understand, most letters sound similar to most others, and letter combinations are left out. They have said so far "he'll grow out of that likely" but I am not in agreement on that front. He is not improving or self correcting at all and I think he needs help before it is even more deeply ingrained. Also he constantly talks gibberish, his own language. He communicates like that really very well, using body language etc to help him. He must know more words than the average 5 year old but he speaks gibberesh about 50% of the time.

I'm sorry you were upset by the "highly trained" remark that was made. I can see both sides, in that we (I mean me, and DH) have encountered some really hostile people in this whole process of trying to get help for DS. And some have made really insulting comments to us. Our HV came in and after having only met him 10 mins before said he couldnt possibly be autistic as he was talking to us. So this is where I suppose comments like that come from. But I understand it is not fair to all of the health professionals, and would be insulting to you as an individual who is clued up and trying her hardest to do a hard job.

FWIW I would be very grateful if someone with some knowledge, insight, compassion, and qualifications would come along and be a fly on the wall here for a week. Because I have nothing to hide, I know DS is extremely loved and well looked after. But he is not balanced emotionally at all and it is terrible to suffer through it.

We were referred about a year ago now. The hospital lost our referral 3 times and set up an appointment with the wrong doctor a 4th time. So it has been a long hard struggle where we have had to cope entirely on our own with DS who in many ways has deteriorated.

[minxofmancunia]

heridrawtheline we've just finished the assessment on a little boy who had very similar sensory issues to the ones you describe. The Psychiatrist recommended a sensory profile to be done by an occupational therapist with expertise in this area. The GP can refer him for this directly has this been suggested to you?

[minxofmancunia]

I'm realyy sorry the autism support worker wasn't helpful Nikos and wasn'r armed with knowledge she should have been.

FWIW I DON'T think my most has an air of trying to blame the parents about it, we try to get parents on board and look at the whole system not isolate the child as a separate problem whatever their needs are.

Twice on friday I talked to parents about NOT being so hard on themselves and really reinforcing all the strengths and protective factor they had going for them as they were so self critical. That's what we really want to do help families find their strengths in the midst of all the worry and soul searching because most families have lots of them!

Sometimes a parent will be trying their absolute best but will have been in care themselves and have had no decent parenting experiences of their own to call on so we try to build resilience with them. It's NOT blaming or fault finding, it's NOT their fault they're struggling against adversity.

But sometimes, well only ocassionally I'm afraid children's difficulties can be traced directly back to experiences they've had with being parented in a way that's overtly critical, indulgent or neglectful or actively abusive. Even then we look for strengths.

Some of the abuse I've recieved at work I don't think is ever acceptable no matter how distressed a parent is. I'm a parent too, I don't always agree with GPs Hvs etc. but I try to vocalise it respectfully.

FWIW I do understand the fear that parents feel about being labelled with Munchausens, but IME I've only known this label be (correctly) applied twice. It's not bandies around or brought up unless their are grave concerns as we know how damaging it can be.

Also if I'm unsure about something I'll be hones with families, ASD/neuro developmental is NOT my area of expertise, I will always seek advice/refer to a colleague rather than trying to make out I know exactly what I'm talking about. Likewise my colleagues refer to be re children with suspected OCD/psychosis and depression, because that's what I know lots about and have experience in and hopefully I can help.

We ARE "highly trained professionals" and I'll always stand by that. Do you have any idea of the rigours of becoming a child psychologist for example? Since I qualified 10 years ago I've never stopped studying and educating myself and so for people to mock that I'm afraid I do find it a bit insulting.

[cory]

well, I was supposed to discipline my dd out of having sore joints, so I know how you feel

[hereidrawtheline]

cory you are very right there. That is constantly what I worry about. And although this isnt CAHMS, my GP himself doesnt seem terribly educated about ASD, and he said to me it is all behavioural and discipline related. And I assure you, DS is NOT spoiled. And I fail to see how everything he does can be put down to discipline, I mean... am I supposed to put him in TO when he licks me or cries trying to get the spider off his neck? These are the things that are being included and it just doesnt make sense. And the more I try to explain the more they think "yup, she is determined to get a DX of something serious" when I am not. I just want them to understand what his needs are so we can help him.

[cory]

CAMHS doesn't have to be a destructive force and I for my part have actually found them quite helpful. But I think many parents of children with SN- and that definitely includes me- have had some experience of medical professionals who are either simply poor communicators or who genuinely believe that if they cannot immediately find another diagnosis then the problem must have been caused by the parents. And for parents, it can be incredibly difficult to keep pushing for a second opinion/further investigations with the fear at the back of your mind that you are laying yourself open to Munchausen by proxy allegations.

[hereidrawtheline]

Thanks everyone again for your thoughts and input.

I have calmed down from my attachment disorder panic of that night, you are right googling it was a bloody mistake!

I am doing what I said before, waiting to see what happens. I dont have any examples of my own yet of CAHMS being a destructive force, this was the first CAHMS appointment we have ever had and the appointment itself went ok, I was a little bit sceptical of what the doctor was saying but still open minded, and clearly he is correct that DS's attachment/obsession with me is quite remarkable. DS's thing now, for the last several weeks, is holding on to me and rubbing all over me like a cat and licking me. Which I havent encouraged by any means as I know it is "odd" to lick anyone. But neither does it in any way disgust me, I mean I wouldnt let DH lick me (like that ) but with DS it is just one of his strange little ways and I understand he wants to feel me. He mouths & licks lots of things anyway but I am the only person really. Slight waffle there!

Anyway, Minx, I can imagine it is hard dealing with parents, some of whom may even be part of the problem. I really do sympathise with that. And my husband works for the NHS, I know it is often a hard thankless job. But the thing I have found so frustrating is that anyone who knows me at all, knows I truly have nothing but DS's best interests at heart. I am truly his Mama we are very close and I can read him like a weather vane. I wish doctors didnt treat me as if I was "against" them when I am only FOR DS. And I wish they would trust me. I will never ever misrepresent him. I do worry, yes, but when it gets too much a sharp slap puts in proportion. But I just want him well. And he is not happy or stable. That is what I am trying to achieve. The doctors can come across as aggressive as well.

But this is the thing - doctors, nurses, mothers, children, are really just people. So in all places you will get some good and some bad.