Whoopie - I get my meeting feedback tomorrow - I'm SO excited

[KatyMac]

NOT

I am still unhappy with the whole thing & I am not looking forward to being told what a bad parent I am

Paranoid? Moi? But of course.......

Thanks

I get more & more cynical as this whole thing goes on

Awful for you

Maybe re-read your thread about DD's school report? And bloody well take it to the meeting.

I still think of that from time to time because it was one of the most inspirational and moving posts I have ever read here.

I still have to write my response to the school for that

You are right though - it was amazing; thanks it gives me something to hold on too

Just found this thread. If you've not gone yet good luck. If you have then I hope it's going well. I hope they surprise you by being supportive and sensitive.

You're very welcome KatyMac, let us know how you get on. Thinking of you today x

I went
They are right
I am wrong
all support has been removed incl the CAF & DLA(which is fine but I would have liked to be consulted)

DD has to still see the psychologist despite her 'psychological' condition being over

I still need to see the CBT lady despite her saying she couldn't see why I had been referred

All in all, not a success

Oh shit I am sorry to hear that.

The psych / CBT stuff is bad enough but why remove the support?

SO DH & I have our third regularappointment with the psychologist tomorrow (which the meeting was told is a regular appointment)

I need to say something to get her off my back without lying because they are maintaining DD had a psychological condition which she is completely better from 20 weeks later (and I am kinda under the impression that psychological conditions take longer to 'fix' than that - but of course I know nothing) & still think she had something viral/postviral/post innoculation & I won't b convinced otherwise (even if you all say I'm a pratt)

Dear god I sound deranged

I don't think I am just resigned to the fact that it's all a mess

I don't think anyone should suggest that a child could lose her sight from a psychological condition and then assume that it has just gone away by itself. That just seems irresponsible to me. You don't "know nothing"! You have the instincts of a mother and those instincts are often proved right against all the odds.

Can you resign yourself to the fact that they'll never agree with you and you may never have an answer about what happened?

Perhaps the psychologist could give you some more detailed info tomorrow which gives you some more answers.

You don't sounds deranged by the way, just worried and frustrated and who wouldn't be?

So is her vision completely restored????

I just don't know

I guess I am prepared to accept that we will never agree

I need to get through the meeting tomorrow without looking strident & unreasonable

She is appearing much better wrt her sight

You are her mother, so you get to decide when she stops seeing the psychologist, unless they feel that you are so unable to make decisions about her welfare that they will seek and get a court order otherwise.

You are in control of your health, mental or otherwise, and you are entitled to decide if CBT is useful to you. They can't make you go, unless your mental health is so bad that they will Section you.

The CAF probably wouldn't have given you anything anyway, and you were feeling unsure about what to do about the DLA. So annoying about consultation, but end result the same.

You did the right thing, and you were a good parent, so overall, a great success

Although I like your last sentence Lougle, that was definitely not agreed with by the professionals

TBH I think my mental health is fine, now. I wouldn't have said that a month/6 weeks ago; but now I'm fine

The thing inside me which was sure DD was ill has gone, I don't know what that feeling was but I had it during the time I felt DD was most ill, and it went as she got better

I don't think DD needs to see the psychologist anymore but getting out of it gracefully will be hard

Which inoculation did she have? They will never agree to that being a cause to the point where it's not worth pursuing unless you are feeling very strong, but someone posted the other day (here???? Maybe on FB) about their baby having temporary blindness after an inoculation.

Can she see now? If not they shouldn't have removed DLA.

I was the one posting about my baby losing his sight within a day of his 3 month vaccine. His sight loss also lasted several months (maybe 9? Being a baby it was all really hard to tell)

But KatyMac I didn't realise you felt her blindness was caused by a vaccine. Did she lose her sight within a week of one?

I have also met one other person whose baby lost their sight straight after the 3 month jab - and regained it again.

Very very freaky.

No - not straight after

But she had so many illnesses/viruses in the autumn, then the swine flu vaccine & Hepatitis, then she got pleurisy; I feel it was a bit of everything

Your poor baby

No idea if this will be helpful - but have a look at 'mindfulness' - things are as they are, you cant change past or future just accept things as they are now.

ie what ever caused your dd sight loss, it is now improving, and just go with that. you will not change the medics mind, and they will not change your mind on what caused it.

(and everybody here thinks you are a good parent who was looking after her child.)

Thanks improvingslowly, it's funny I was talking to someone last night who was reminding me how good I usually am about 'letting go' of situations which upset me, and how easily I move on from my 'problem situations'.

And think back (after reading some links about mindfulness) I was realising how right she was.

I don't hold a grudge, I am good friends with people who do things I don't approve of or who have radically different views to myself. I move on from bad situations reasonably easily.

BUT this normally happens after intense thought, 'worrying' a problem until it is dissected to it's smallest component, but most importantly AFTER

I can't move on while things are still happening and I struggle intensely with uncertainty - I think this is my biggest problem.

I think I feel that DD, DH & I have moved on from where we were and that we are now in the 'after'.

Really what 'they' think is no longer relevant, I know how I will always have my views & they will always have theirs. In the same way as I 'didn't sue' post either my or DH's misdiagnosis I won't complain or make any more fuss about her treatment. Because to do that would be to pay attention to something I want to move on from

The difficulty will be getting that across this morning

I wonder if psychologists see people as a series of 'conditions' rather than individuals with coping mechanisms which work for them - as bad habits go, searching the internet for cures, worrying a problem to death, being over-protective of my daughters health and questioning are, I feel, much more reasonable than drinking or smoking or over eating because of 'stress'

But maybe I only feel that because that's the way I deal with stress maybe other people think other ways of coping are better

Blimey an essay - sorry

The biggest problem you have when dealing with health professionals is that you are a mother. Therefore they will see you as irrational.

I watch everything I say around healthcare professionals now, and I present problems/puzzles in a different way than I think. I never offer my opinion, only ever a lay persons suggestion.

I took this tack early on when I found that my arguing that my non-verbal son needed some speech therapy (having been told and argued against 'he's's not capable of anything is he') meant that 2 years later a SALT I had never met, who had never met my son told the school I was 'well known for being in denial'. This was crap - I knew he had major problems which was why I was arguing for therapy in the first place.

But as a mother this is how you will be treated by health care professionals.

Now I never tell them anything - I show them on video. And now I wouldn't argue that he was capable of something I would ask what their criteria for offering therapy was.

If you don't want to go I would just say you have no need for future support. Thank them for their time then go. It doesn't matter if they think you were a mad mother in denial, they'll think that anyway as they think that about every single mother.

I've seen some excellent paeds & neuros this year - really really good, but I still assume they think I'm a mad mother in denial.

I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn
I WILL NOT be drawn

What do you reckon? Floods of tears within minutes?

If you weren't a good parent you wouldn't be on here asking for support and advice. You come across a lovely caring Mum. Some not all "professionals" can lack empathy and understanding of the situation that we are in, that is their problem not yours. You have done all you can for your child have strength and faith in knowing that. Professionals can be wrong and you know yourself that you are OK so if you don't want anymore input from them then don't take it.

I think I've been apologised to.

Apparently if people just got to know me they would understand that my reactions were appropriate.

I think my 'world view' has been complimented.

I was told that if I felt my parenting had been questioned, that I was right, and that the questioning was quite unnecessary.

I am a bit tbh

What a strange outcome, especially not to be sure if it was an apology or not. It's probably the nearest they can get without risking their professional pride.

They are soooo right that your parenting should not have been questioned. What is their plan for moving forward, assuming they have one that is ?