How can I response to professionals constantly bringing up child protection issues

[Rumbledore]

Have name changed.

I have previously posted about dd (13,dx AS) who has not attended school for about 6 months. The Clinical Psych has agreed she is not able to attend.

The problem is where she won't engage with any professional. As a result child protection issues keep being raised, as no professional has seen her since last Oct.

She is too anxious and terrified of meeting them, When a home tutor was imposed upon her,she self confined to her room and went nocturnal.

Another professional agreed to suspend the tutor for a while to see how she responds. And she has responded brilliantly, keeping daylight hours, and leaving her room to engage with me.

It's been 2 weeks and now another professionals meeting has been called, and PP have said it will be about child protection and lack of education.

How can I respond?
She was statemented last Dec, which named her current ms school. I disagree and will appeal.

I have no personal experience of this, but i know that friends of mine in a similar situation to yours actually had their GPs sign their children off school sick, which gave a few months of "breathing space" without any thoughts of tutors, learning etc.The GPs cited extreme anxiety depression etc. If she is that anxious and terrified, then she is unwell, and needs some space. Is the GP aware of the situation and would your DD contemplate an appt?

Another possibility is actually contacting SS yourself with regard to child protection and get some advice, also pointing out that these professionals are putting more and more pressure onto a child in a vulnerable state at present.

How stressful for you. Child protection ffsDo you have a school in mind?

My DD was in a similar state this time last year aged 12 and she withdrew from the world totally lost it when we got her favourite teacher to come and give her maths tutoring. She also did the same when the CAMHS psych did a home visit.

I really feel for you because watching your child in this state is appalling.

Although nobody raised child protection concerns I was aware that it was a possibility and I was very active in keeping everyone informed and pushing them to find solutions.

Is there an independent person who she knows well and trusts who could visit you and verify that she is fine? Perhaps your GP, practice nurse, a trusted teacher or someone who runs a club she's attended? If you can get her to agree to it you can then let the professionals know what you've arranged so they know you are being pro-active.

Does your DD have any contact with CAMHS? DD1 wouldn't engage with them for a few months but we eventually persuaded her to see a psychiatrist there who prescribe some medication to take the edge off her anxiety. It worked and after a lot of very hard work and heartache she is back in school with more appropriate provision and is a much happier girl. She's still working with CAMHS.

Your gut feeling is to take the pressure off her and I think you're right to insist that this happens. Pushing her to see professionals and tutors is just going to make her anxiety more unmanageable and destroy her trust in you. In the state she's in she's incapable of leaning anything useful anyway so that needs sorting long before anyone worries about her education.

(((HUGS)))

Madoldbird, brilliant name

The EWO has contacted my GP who thinks we should cooperate and see the professionals. He is unwilling to sign her off with stress. Instead he has recommended I see an educational lawyer .

SS attended the last meeting and will attend the next. The GP has also been invited, but is on holiday.

I think they are building up to taking the next step, whatever it is.

corns1lk, I don't have a school in mind. I however want a specialist ASD school. In the meantime, I have almost decided to homeschool her in the interim.

Jesus what a nightmare. If you home school do they all have to back off and leave you to it?

Al it's a long story, but dd has such disdain for professionals. She used to be compliant and go to camhs, student counsellor, play therapist, etc. And each one did not understand her issues and put all her problems down to bereavement (dad died 7 years ago, prob self-inflicted), brother bullying her (he's 5 years younger, fgs).She says they all know nothing, are stupid, and don't help.

She also suffered 3 traumatic incidents at school, two requiring ambulance attendance and transport to hosp.AND they still want her to go back to that school.

I'm thinking of asking a friend (either teacher or solicitor) to pop in once a week to verify she's ok.

corns in theory they should back off if I HE, but somehow I doubt it!

sounds like you've both had a tough time. Getting someone else to verify that she's okay sounds like a good idea. Do you have a letter from the psych saying that she should not attend school?

CAMHS hold the key to this.

I would be pushing for an in-patient assessment. The ways things stand nothing will improve. She sounds as though she needs intensively therapy that can only be delivered in a CAMHS unit - and where she has no choice in the matter.

Sorry to have been so blunt.

Hi. I think, you are in a very vulnerable position as far as Child Protection is concerned. You know what state your dd is in, but, I get the sense, that Education is playing hard-ball, and have already involved SS. Were you invited to the last meeting or the up-coming one? If not, you are still entitled to a copy of the Minutes-there definitely will be some,even if you are told otherwise.
So, first, request a copy of the minutes, so you can see who said what, and what their plan of action is. If you think anything is incorrect, send your ammendments to whoever wrote the minutes.
Next, can you see a different GP in the Practise?
If, your dds Psych. has agreed your dd is too frail mentally to attend school, or see anyone, the onus is on him/her, to convey this to all other Profess. involved with your dd. He is the Lead Health Person and is responsible for your dds mental well-being-NOT your GP. So, has he been attending these meetings re dd? Has he been invited? Ring him direct, or his Secretary, and ask him to confirm his opinion re dd in WRITING to YOU and to cc ALL other Profess. This gives you a paper trail and shows you are trying to help your dd.
As your dd is over 12yrs, she has a say in her care and what she wants re school. You can ask her to write to the Senco/LEA and say why school is so over-whelming and she can also say if she feels things would be better if she were in an ASD school.(Make sure she dates and signs it). You hand deliver it to Senco, so noone can say, they did not receive it.(Make a copy of it).
Have you told your dd that people are becoming concerned re her well-being, and that if she wont see at least one trusted person, what happens next, may be taken out of your hands.
I know you wont want to add to her anxiety, but she needs to know on one level, that the status quo cannot go on.
Lastly, I think it would be beneficial to see an educational law expert to find out what your rights and the LEAs rights are.(I am in Scotland, and we have a centre for this).
Apologies for the length of post, but you are in a difficult position. Take Care.

wet I have considered this. There is a hospital school locally and it sounds
wonderful. It may be something to consider and I will discusss with the CP when he actually gives me some time (have asked 4 times already - what is it with them, give you a dx and run).

bigpants whenever I see your name, I think of Bridget Jones . Good idea about the minutes, I will ask for them. The problem here is not about attending school, this is accepted as the CP has already said so. It's about her not being seen by a professional. I have already told my dd about how serious all this is, but I don't think she quite takes in how serious it is. I think I will see how the next meeting goes, then consult an educational law expert.

Thank you for all your replies. If anyone has been through anything similar, I would like to hear your experiences.

Really don't know anything about this but:
could a (hidden) video tape be helpful?

Oh, glimmer, do you know I've fantasised about that . She's crazy about cuddly toys,so if I could get one with a cam, that would be grrrreeeeaaat.

She's so paranoid about the webcam on her laptop, she sticks blutak on the lens

is she on any medication for her anxiety?

No medication, she's absolutely fine when left to get on with what she likes doing, perfectly relaxed and chilled. It's only when people start making demands on her that the anxiety goes through the roof.

She also has various allergies so not keen to take drugs unless absolutely necessary.

for you but I have seen cases like this where CP issues were raised for a good reason - not saying that that is the case for you, but that is the culture post Peter Connolly, I guess. I wouldn't think it is personal to your case. I think your idea about getting a friend to drop in and verify is a good one.

I think the key thing is appropriate provison. You have said you will appeal re: naming of school. How far off the time-limit for appeal are you? I would get that in ASAP, as it also shows that you are trying to 'move the situation forward' (as they will say!)

weird one but can you home school her? therefore covering the CP issues they are concerned about?

Rumbledore I think perhaps you should reconsider your feelings that she is absolutely fine when she's allowed to do what she wants to do and that drugs are not absolutely necessary. If she's anything like my DD she is far from ok but is putting a lid on her anxieties to stop her having to confront them. She can keep that lid on until something comes up which makes her more stressed. Then she can't hold the lid on and hide from her anxieties any longer.

DD1 was doing just that this time last year. After 6 months on medication she is loads better but she still hasn't allowed herself to take that lid off completely yet. She'll be working with CAMHS for a long time I think.

Obviously you need to talk to professionals about this but at her age I'd be surprised if she backs down and agrees to engage with people who can help her without medication. It's too easy to hide in her bedroom and not confront her fears. She's been badly let down by professionals in the past and she probably isn't willing or able to take the risk again without help. She can't get the help without taking the risk.

I echo what Al1son says with regard to medication.

Has pathological demand avoidance been ruled out?

FGS do't suggest that. The fewer of that particular dx the better. Rule out other possibilities long before considering PDA.

Why is that then WetAugust? < genuinely curious>

Many reasons < which are my own beliefs although I'll probably get flamed for them anyway>

Seems I have a lot to think about, but must try to catch up on some sleep now. Have spent too many nights doing research and mindless addictive facebook games

Beliefs welcome

I started looking into PDA about 7 years ago, as I heard of more children being disgnosed with it.

I discovered that most of those children, if not all at that time, came from the Nottingham area and had been dx?d by Elizabeth Newson, who practised there.

I tried to find out more about it, such as the diagnostic criteria, support strategies etc, but the EN Centre at that time sold you the literature about the condition. I didn?t like that.

The NAS website at that time reported that some ASD professionals as having sceptical views on the condition as it was described as a pervasive developmental disorder that was not autism, however many of the characteristics could equally apply to autism. These days the NAS appears to accept it and it?s becoming more closely associated with autism.

I understand that attempts have been made to get it included in the DSM IV, but have so far failed. That speaks volumes for me.

To me there is too much overlap between what could be considered ASD-like indicators and those that constitute PDA. It?s almost focusing on some specific ASD behaviours and unnecessarily giving them a separate identity.

What I particularly don?t like is the label itself PDA. I understand the name was chosen in a hurry as a paper was to be published imminently and a name was needed urgently but if you break the label into its constituent parts

Pathological - i.e. caused by or involving a disease / evidencing mentally disturbed condition (e.g. a pathological liar).

Demand Avoidance ? implies deviancy, laziness, irresponsibility

I don?t want to saddle a child with a label like that. It implies willfullness and I particularly dislike the 'disease/ mentally disturbed' connotations. My ASD son has a condition - not a disease.

One of the main criteria is actually manipulation, yet many on this board fail to see that and think the label is just an alternative form of Aspergers / ASD etc ? which it?s not. Manipulation implies intent - that the action is premeditated and self-serving. I dislike that.

Also, why is the child pathologically avoiding demands? Anxiety is one symptom. My Aspergers son also avoids demands as he?s too anxious as a result of sensory overload / insomnia / anxiety caused by Aspergers to follow through demands. Why isn?t that being considered?

I expect that many children who, if they lived in other parts of the UK other than Nottingham and the other outposts that have adopted the diagnosis, they too would be primarily considered to be ASD / Aspergers. Differential diagnosis is a very difficult undertaking.

Tony Attwood is a renowned ASD expert. He states in response to the HFA / Aspergers dx question ? choose the dx label that is most likely to be recognised and therefore deliver the support you need.

How does a dx of PDA deliver the correct support if most of the UK don?t dx it so many support resources don?t even understand it?

Assuming I had the necessary background, I could single out one or some of my son?s very diverse Aspergic responses, decide they were a separate syndrome, write a paper and sell the publication to parents who thought their child may have it, open a centre specialising in it and dx local children with it. I've spent many happy hours thinking of what I?d call the label e.g. Must touch all the furniture in the living room in a certain sequence syndrome.

I could go on.