So, CAMHS won't help us. What can we DO about an 8yo who wants to die?

[TheCountessofFitzdotterel]

Yesterday ds1 had an assessment with CAMHS and they said they couldn't offer us any help, because what we were already doing as parents was fine.

Today a lucky young person on their driving test got to demonstrate their emergency stop for real when ds pulled away from dh and stepped out in front of a car (our school is round the corner from the driving test centre).

I'm at my wit's end. All I came away with was a reading list of books about helping children with low self-esteem. Which of course I have ordered and will read, but I kind of hoped someone with actual experience and knowledge would be able to help, y'know?

I have hunted high and low for private counselling which we would happily pay for but it's hard to find anyone who will work with children this young (the ones that say they do children mostly seem to start at 10).

He's a lovely kid, has friends, hobbies, empathy, is very bright, but massively oversensitive and emotionally much younger than his actual age.

I can't believe that actual repeated attempts to self-harm, plus impossible behaviour at school (it was them who referred him to CAMHS) - oh, plus episodes where he thinks I am someone else/a monster in disguise and am trying to hurt him - are not considered enough to actually help us. What do we do? Other than what we are doing now, trying to parent him well and keep him safe?

[TheCountessofFitzdotterel]

Goldmandra, what other neurodevelopmental disorders are there that they might consider?

Coming back to the asd suggestions, what tends to happen with everyone we talk to who has any experience of it (not just at school but also friends with ASD kids, and gp) is that they all pick up on the similarities but also the differences, rather than some people saying he is and others disagreeing, iyswim. The suggestion of looking carefully at descriptions of girls with ASD is a good one - I will when I get a chance.

[peacoat]

You need to go back to your GP and clearly and firmly explain that you feel your child is at risk and that you would like a full assessment, including ASD. Insist on it.

[TheCountessofFitzdotterel]

I actually don't need a second referral as CAMHS said now we're in the system we can refer ourselves - it's just a case of not knowing what to push for.

[IsItMeOr]

Oh Countess, sorry you are all having such a hard time.

You've already had all the practical advice I could think of. The consultant paediatrician told us DS did not have autism about 8 months before he got a multi-disciplinary assessment which confirmed that he did indeed have autism - a very clear-cut case for those who know what they're looking for apparently.

DS did not present typically. No obvious sensitivities, repetitive behaviour, etc. His language is excellent - until it comes to talking about feelings. His eye contact is great - until you tell him off. He's very good natured - and can be extremely rigid. He loves being with other people - and doesn't really know how to interact successfully.

It's a very broad spectrum. A diagnosis is also not something to be terrified about - it doesn't change who your wonderful DS is. It might help you and others change how you interact with him so that he and everybody else has a much happier time.

Since diagnosis not quite 9 months ago, things have already got a lot better. DS still has lots of challenges, as do we and school. We have seen our joking, smiling, laughing DS regularly again at last, and he is as likely to surprise us by sailing through a challenge as by (seemingly) randomly having a meltdown.

[Selks]

Goldmandra, I can only speak from my experience from my service. If you have experience of services working in other ways then fair play to you. And yes, a neuro assessment does not only look at ASD...

And according to the OP school has merely said 'they are not entirely sure' re ASD.

Anyway I'm just trying to help from the information I know. As I've written above, I am actually encouraging the OP to ask for more support. I've said my two-pennorth' so I will leave you to it.

[Goldmandra]

what other neurodevelopmental disorders are there that they might consider?

They don't generally start the process looking for one particular disorder. They try to keep an open mind and come to an agreement, once they have all the evidence, as professionals and with the parents.

They carry out observations in their educational settings looking at their speech and language, social interaction, ability to manage change, theory of mind, sensory processing, etc, get parents to complete questionnaires, take a full developmental history in depth going right back to pregnancy, observe their motor skills, ability to play, imagination, talk about how they respond to behaviour management strategies, quality of sleep, their academic levels, etc. There are probably any number of disorders they could identify like foetal alcohol syndrome, speech and language disorders, ADHD and thousands of others, I'm sure.

I wouldn't push for a particular diagnosis as sometimes that can be perceived negatively. I would however try out different strategies recommended for children with ASD and anything else you think may fit and make sure you mention if they are particularly successful.

What you need is answers as to why he is getting so distressed in school and perhaps why you feel you wouldn't have been able to keep him safe if you'd taken him out today and recommendations for how best to support him.

[TheCountessofFitzdotterel]

I wouldn't dream of pushing for a particular diagnosis. But since it's becoming abundantly clear to me that just trusting the professionals without taking the initiative myself and making sure I am armed with all possible information, isn't going to result in the best outcome for my ds, it seems like it would be really helpful to have some kind of a starting point for what else might be going on.

We spent half an hour filling in some very long and detailed questionnaires at the start of the CAMHS assessment but they didn't look at them before saying they couldn't offer any help....

[Goldmandra]

I think that's the right approach.

Read lots, write a diary of the behaviours you find concerning with records of how they have been managed by adults and how effective it was, don't be embarrassed to ask difficult questions and clarify what will happen next with timescales and remember that as his parent, you are your child's best advocate.

[IsItMeOr]

OP, has anybody recommended the Explosive Child to you? We had it recommended to us by the consultant who was part of the multidisciplinary assessment, and by loads of MNers.

It isn't specifically for children with autism - and I honestly think the techniques would probably work with any child.

[drudgetrudy]

Go back to your GP and write to CAMHS requesting further assessment including a formal ASD assessment as you remain very concerned about your son.
It is very,very unusual for a child of this age to have genuine delusions or to be truly suicidal. That does not mean it never happens.
You may have had an initial screening assessment by a nurse, CAMHS social worker or clinical psychologist-you have no idea how experienced they are.

[TheCountessofFitzdotterel]

Should I go back to CAMHS, though, or should I try to find an educational psychologist, either privately or through the school?
School are talking about putting him on a partial timetable (mornings only). I was expecting a proper reintegration meeting this morning as we had last time but all I got was a quick chat with the new deputy head before he dashed off on a school trip - and in the light of last week (both the CAMHS thing and his subsequent exclusion) I really need to know what school are going to do. It wouldn't be out of order to request another meeting, would it?
In the autumn term he was top in his class for behaviour and now they are talking about him not being able to cope with a whole day in school...

[TheCountessofFitzdotterel]

BTW I have been reading about subtle presentations of asd as Goldmandra suggested and it still isn't sounding anything like ds1 - you would have to try very hard to make him fit, I think. It honestly isn't that I have anything against an asd diagnosis, I just don't think it works for him.

[smellyfishead]

was the exclusion official? ie have you had official exclusion paperwork give to you? - if no, they are not allowed to unofficially exclude, I had this problem with my son, they kept asking me to take him home/keep him home without any official exclusion. This is not helpful for anyone as without the official exclusions on his file, how will anyone know hes having a hard time!?

Id think carefully about them suggesting half days, are they planning on sending work home?
My son got used as an errand boy for his last year at infants, they had no idea how to control him so used to send him class to class to run imaginary errands, to get him out their hair.

you should of had a proper re-integration meeting, if thats not what you got id ask for one.

Id ask school about getting ed pysch in. Camhs are notoriously crap im afraid, we had a identical meeting, "yes your managing his behaviours well, go away" basically. I was told by a professional that unless they are literally holding others at knifepoint or similar ds doesn't stand a chance at getting seen again.

Im also in the same boat, weve been going through the motions since he was 4, camhs, paeds, continence nurse etc... hes now 12 and we are no further forward.....its only in the last year since we changed consultants that we feel like were moving forward, hearing tested, observations done at school etc etc

Its a long ol slog

[smellyfishead]

Ps I have no clear thought on what could or couldn't be wrong with ds, but I do think ODD and PDA come very close to describing his behaviours. I still feel he should be tested for hfa/Asperger's but he does give eye contact so am made to feel by the professionals that it cant be that.

[Almahart]

Oh FFS! How can there still be professionals who think you can't have aspergers if you make eye contact. It really beggars belief. Two DX of autism in my family, both chatty people who make eye contact. We lost a year for one of them after an Ed Psych came out with that line and before we knew better

[ThumbWitchesAbroad]

Have you tried this link, Countess?
find.childpsychotherapy.org.uk/therapists/

I used to work with an amazing child psych, but she was in the SW London area, so not much use to you. She did take very young children though, youngest I saw her with was 3!

Have you looked at PDA (pathological demand avoidance) - very high stress/anxiety responses are quite common (I have a friend whose DD is currently going through the initial stages of referral for diagnosis for this - she fits the bill almost perfectly :( )

My niece has Asperger's. She has no problem making eye contact at all. I agree with Alma, it's madness that some of these so-called professionals are still so backwards in their thinking with regard to some of these conditions!

[Goldmandra]

If the school feel that they can't meet your son's needs for full days, they need to apply for an EHC assessment so that they can get him the support he needs to be in school full time.

It isn't acceptable to put children on part time timetables.

An EHC assessment would trigger observations and reports by different professionals who can help identify his needs and make recommendations for how they should be met.

If the school don't want to apply for one, you can do it. There's a model letter on the IPSEA website.

Alternatively the school can bring in professionals like ed psych, learning support, etc to assess him and help them work out how to support him.

[TheCountessofFitzdotterel]

I am glad you don't think half days are the answer Goldmandra - that's my feeling. Mainly because it would feed his belief that school hates him and wants to get rid of him.
I phoned school and spoke to one of the staff who is working with him in the special unit and made it clear that if the problem is him getting overwhelmed by the noise etc at school, it would be a better solution to have him in a quiet room at school than sending him home. We talked about putting things in process to apply for a statement (is this what the EHC assessment is for?)
They are waiting for a call back from a clinical psychologist. So things are happening.
I have a question - child psychologist, clinical psychologist, educational psychologist - do I need to know the difference?

[Goldmandra]

child psychologist, clinical psychologist, educational psychologist - do I need to know the difference?

Educational psychologists usually have a qualification in teaching and one in psychology although I've been told that, in some areas, they can just have the psychology qualification. They are often employed by local authorities and schools buy in their services to support their pupils. There are also independent educational psychologists and some parents pay them to give private reports making recommendations that help them with battles for educational provision.

I don't know what the requirements/qualifications are to call yourself a clinical or child psychologist but I'm sure there will be another MNer who can help with that.

An EHC Plan is the document that has recently replaced statements of SEN and the assessment used to be called a statutory assessment. It is the process of collating reports from various professionals to establish a child's needs, how they should be met and what level of funding they need. If the level of need is beyond that which a school could be expected to support from within it's usual resources, a plan is issued and the parents are asked to name the school where they would like their child's needs to be met.

The school should be looking at how to prevent your DS from getting into such a distressed state in the first place and also how he can still access the full curriculum in a way that meets his needs. That means that, if they put him in a quiet room to calm down, it needs to be for a specific purpose i.e. to help him calm down, and they also need to show that he is getting the same opportunities to learn as his peers.

[Delnkids]

Don't give up, I was referred to CAHMS for my son at the end of 2012, took 3 months to get an appointment, they got him, (aged 12 then) to do a 100 page test with multiple choice answers, he past! Well, in their eye's he did as his score was not sufficient to warrant help! He continued to get worse, depression, missing school, spending whole days in bed, BUT all the time asking me to get him help. I took him to the doctors numerous more times and at the end of 2013 got referred to CAHMs again, 3 months wait, but this time they saw him. But 5 weeks later told he needs more specialist help, 8 month wait for next appointment! NOT wanting to scare anyone here, but my son has now missed 2 years schooling, spent 8 months of that in his bedroom not leaving the house and has since been sectioned to get him into a hospital for help. He is home now and we still have a long way to go!
What I want to get across is please do not give up, resources are limited, but good help is there, PLEASE, PLEASE KEEP PUSHING TO GET IT!!!
I had been very ill myself and cursed myself for not being stronger to push more from the start, but I am a single mum of 3 and have been in poor health for quite a time and only recently have my own health issues resolving. But if you can find private and can afford it get some! CAHMs may even be able to direct you to someone in your area!

[peacoat]

A clinical psychologist follows a similar education path as an Ed Psych (which is an Applied Doctorate these days) but they tend to work in clinical settings and across a different type of issues - are able to screen for things such as Tourette's, ADHD, ASD, cognitive ability etc (some of these they can assess for, others require teams for assessment). There is some cross over but they emphasise different areas of psychology.

[peacoat]

I don't think an EP needs a teaching qualification - certainly not in England. They do need experience in a school (which could be a year as a TA). An EP looks at issues which affect education and gives strategies to use in school, a clinical focuses more on diagnoses of a wider range of issues that aren't limited to having an impact in a school setting.

[Goldmandra]

I don't think an EP needs a teaching qualification - certainly not in England.

Maybe that was just our county, not that I think it applies here any more or that we even have many now. They are very thin on the ground.

[ChaiseLounger]

Wishing you every success. Camhs didn't help us when ds1 wanted to die at a similar age.
School have failed in their duty of care to my son. Hope they don't to yours.

[TheCountessofFitzdotterel]

Sorry I haven't acknowledged everyone 's comments - am on phone rather than laptop.
Just had the report back from CAMHS and it's full to the brim of minor errors and random stuff we never said, eg that he was difficult to soothe as a baby.