<sigh> DD's first day back at school

[KatyMac]

Poor DD, no 121, her little friend that used to help has been moved to another class

So she is wandering around lost, late for lessons, doing no work when she gets there

She won't go to Student Services, "Can't you sort it out mummy?"

Did you choose the lead professional and do you have faith in him/her? If so would it be worth bringing up some of your concerns before the meeting and asking them the raise them on your behalf? I think it's very reasonable to ask for reassurance that there is some theory behind any approaches taken.

I'm perpelexed by the idea that CP issues could be raised by you questioning your DD's support being withdrawn. Have I got that right? It smacks of a bullying approach.

Do you have someone independent to support you at the CAF meeting? I think you seriously need it.

TBH I feel betrayed by the LP

She & my independent from the charity were at the professionals meeting & I felt ganged up on

Gosh, Kate! You must really feel like a voice in the wilderness.

Have you asked Parent Partnership to come to the CAF with you? I think you need someone new to come in and look at this with a fresh pair of eyes.

I can really see the attraction of HE but would that increase these vague CP concerns? I think you're right to wait for the CAF and see if you can get any more information before you do that.

Gosh, Kate! You must really feel like a voice in the wilderness.

Have you asked Parent Partnership to come to the CAF with you? I think you need someone new to come in and look at this with a fresh pair of eyes.

I can really see the attraction of HE but would that increase these vague CP concerns? I think you're right to wait for the CAF and see if you can get any more information before you do that.

I would guess the vague CP concerns are about whether her functional visual loss is down to you ie do you help or hinder recovery. If this was said openly, oddly enough I think you'd feel less undermined. Now this next bit is about some hypothetical situations so please don't take them personally.

For example, a mum constantly at the doctors with her well child... but having convinced the kid they are ill. Now if someone was doing that on purpose it wd be muchausen's by proxy and the child might need to live elsewhere & they'd both need therapy.

If the mum with the well kid was just overanxious / depressed/ 'issues': solution would also be therapy for both of them & not to get overexcited about the symptoms themselves.

If it was mostly coming from the kid, the mum wd probably get sucked in to some extent. Coaching by the psychologist in how to downplay the problem would help & the kid wd need to learn to express their problems in words and not in physical symptoms.

The next step for your DD might be... a proper diagnosis and an opinion on the cause and best method to solve it, by an expert in somatisation / conversion / functional disorders. Plus some therapy for your dd and some input for you. Which seems to be pretty much what you've been asking for!

It was stated at the Professionals meeting that DH & I had attended regular sessions at the psychologists - we had had 2

It was stated at the Professionals meeting that I had been advised to have CBT which I had by the GP, but the lady doing it felt it wasn't necessary, that I obviously needed support but that CBT wasn't appropriate

& I may be being completely unrealistic but 1 session with a psychologist every 2 weeks or so is not going to solve anything quickly

Plus in the 6 months before it DD was very poorly off & on with lots of minor illnesses (chest infection x2, tonsillitis, D&V x2, non-specific viruses (with neurological symptoms)x2, then finally Pleurisy) which all lead to an abysmal school attendance record

Sorry katy I wasn't trying to imply that the minimal and poorly integrated scraps of therapy you've been offerred are the solution. I meant that the type of help you and your family have been chasing sounds appropriate . And that by the time a situation gets complex, many people (not necessarily you) are emotionally affected, and it's important that the secondary effects dont make a difficult situation worse. Nor misintepreted as being the cause.

I'm a bit oversensitive on this one as I suspect the school and ed psych think I'm mostly imagining ds' problems cos I'm anxious. I'd say I'm anxious due to the very real problems not being addressed! but help with the anxiety has helped me to strategise better with ds. I'm hoping at some point i might look less stressed when dealing with ed psych, so she stops thinking I've lost the plot .

I'm so disappointed I honestly thought doing the CAF would help us as a family

I have recommended them to other families I work with; but it has turned out to be pointless, time-wasting and detrimental ta all our mental health. I will never suggest one to a family again.

I feel isolated far more so than when I started, let down by people I had relationships with and actually victimised and bullied.

But that won't help DD; she has been told 3 times in 3 days that student services will "phone mummy", she has been told she will be "given a role in class" to "improve her self esteem" and she has run out of a classroom crying because of "the boys"

I agree I need help to manage my anxiety but not, I think, CBT

"I suspect the school and ed psych think I'm mostly imagining ds' problems cos I'm anxious. I'd say I'm anxious due to the very real problems not being addressed!" I so agree with that

& hospital approaching for DH (14 days admission) I can't see life getting easier for DD

Apparently supporting DD with "re-enforce the problem"

Because it's psychological

So presumably supporting an anorexic or a self harmer would be a bad thing too......can see how that one would end up

I think you need to speak to an expert yourself. You clearly don't feel that the strategies being recommended are helpful and that isn't a recipe for success whether they are the correct ones or not. You either need to have enough information to understand what you're being asked to do or you need an expert to give you advice on what needs changing.

This is not a common condition and I think you still need to reassure yourself that your DD is getting the right treatment. I know I know very little about it but what is being advised sounds like it could do more harm than good.

As you've pointed out, just because a condition is pyschological it is not best treated by being dismissed.

I know - I guess I need to draft an email (in between everything else) to send to those people

Do I offer to pay privately for advise do you think?

I would only do that if you can definitely afford it. I wouldn't be in that position so would just ask for advice and be prepared to pay if I was offered a private appointment.

I have been specifically told not to look for any more help/advise wrt DD......so what!!

That speaks volumes! If they are convinced that they are doing the right thing they'd be happy for you to be told this by other experts. I guess they're not that sure of themselves after all.

I would never agree to my child being treated in this way unless I was convinced that the person recommended it was competent. In asking for further advice your a simply living up to your responsibility as a parent.

I hope you manage to get some answers which reassure you.

I am busy doing OU work and it has led me to think I am doing this all wrong. All I am doing is getting peoples backs up and I really don't want to do that I want to protect DD and keep her safe. I want her to learn effectively and enjoy school; I can't see how their methods will do this but maybe I should be more open to them.

I should be thinking about why they think this will work

I should be finding out about treatments in other countries as well as in the UK

I actually started to plan a systems map and a multiple cause diagram about the situation

Maybe I should pay to see a psychologist myself so that I can understand how they think they are helping her

If a child with ASD ran out of school all the time they would put up gates and fences (hopefully) to protect the child. They would create methods whereby this child could be taught. Why is DD different?

Oh I agree - but in trying to find validation I am not being open to trusting them which is bad (I think?). Maybe I need to say to them "OK - I am being as open and trusting as I can. Please explain this so I can understand it."

I think I need to say "When she had the support her sight was visibly coming back, what happened to change that? Because as an observer the only thing that changed over the holidays was a lack of support which seemed to me to cause a regression with her sight"

But at the same time if she falls/is pushed at school & is hurt I will be beyond cross....I have seen her hurt herself at home with all the support we give her, at school in the corridors - it's beyond thought what might happen

The sad thing is I am normally accused of being too trusting, I always give people the benefit of the doubt.

But the NHS are different somehow; possibly because they have nearly killed me once & DH twice oh & half a dozen other people in the family. When they do it well they are fab; but when they don't it's scary.

Whether my relationship with DD's school will survive this next few weeks I don't know but we are slowly coming round to the idea of HE with significant OOS activities - currently we have singing/piano/guitar, dancing, Guides & drumming but we would have to 'up' that for her peer interaction & I would have to go part-time.

DD was told again today that they would phone me. I don't mind them lying to me, but it is unfair to lie to her

I think that "they have nearly killed me" thing is the key. They do make mistakes, they do have staff who make sweeping judgements. I once had to have a stand up row because A&E wanted to send my six year old home when she was clearly (to me) very ill. It turned out she had a perforated appendix and I dread to think what would have happened if I'd meekly done what they wanted.

You need to find a way to have faith in the treatment your DD is getting. I can't imagine any responsible clinician having a problem with that. Do what you need to do because if you don't and it goes wrong in some way you'll never forgive yourself.

I guess so & in at least 2 of the causes it was straight forward negligence

The fact that it is sight & psychological makes it all the more vital - they are both systems people need working well imo; learning about VI & blindness has been horrific

DD told my mum last night about bullying at school

In lots of ways it's a relief because everyone has been so insistent that everything at school is fine

Was this going on before the symptoms began?

We don't have that much information yet - but I will be telling the psychologist

That could put a very different perspective on it all if they're willing to listen. It could put the cat among the pigeons at the CAF meeting.