to feel humilated in a school meeting?

[amy175]

My daughter many many special needs caused by a genetic disorder. We were having a care plan meeting with some community nurses and the head teacher. She has weight issues which they are due to the disorder. During this meeting i was asked what was in her lunch box, and i told them all, but the head went and got her packed lunch and opened it and showed everyone. I just felt humilated, as i had told them truthfully what was in it, so why did they need to look? Everything in there was as suggested by the dietician and they did eventally admit it was a good lunch, no crisps, choc or sweet things. But why did they need to get it out? The head was going on about how much more food my dd has than everyone else and how she sometimes has pasta instead of a sandwich, but she doesn't it just takes her longer to eat it. And what my DD has for lunch is nothing to do with anyone else but me surely? I just felt so small and humilated. Am i wrong to feel like this? or am i being too sensitive?

[amy175]

hms = hypermobility syndrome

[amy175]

do i just phone up and ask to see them privately oir do i go via gp?

[amy175]

i feel the nurses think that anyway and have told the paed that too.

[Chopstheduck]

I think when children are constantly suffering with pain, it becomes a normal situation and it is hard for them to recognise it and deal with it. She sounds a bit like my ds. He has DCD and hypermobility, and will push through it to the point where he collapses. I admire his tenacity but I do wish he would know when to stop sometimes!

Then, we as parents just get shrugged off as being over protective, because the kids seem to be coping with it fine. It sounds like you really, really need some back up. Do you have anyone to back you up at all? Does she see an occupational therapist?

DS will now ask for ibuprofen when he needs it, but still pushes too far, but the school won't intervene with that, unfortunately. They let him get on with it, and he and i have to deal with the fall out.

[MrsjREwing]

GP, Dr Ninnis see's those outside Westminister privately, no idea of her charges, just know from Ehlers Danlos Syndrome EDS conference she is good.

Prof G see's over 13's on NHS and anyine private.

Keep away from GOSH at the present time with a HMS child.

[amy175]

i'm was going to ask to be sent to childrens clinic at gosh but wont now. think my xmas pressie will be a private consult. will ask all my family for money now

[MrsjREwing]

If you join EDS support uk, there is a fragile links out soon with the latest EDS research from the conference.

[amy175]

i have joined the hypermobility support group but now will do eds too

[MrsjREwing]

GOSH will probably be ok in a year or so once the GMC has concluded their investigations into the goings on there.

[amy175]

i need help now. im so grateful to you xx

[BlueSkySinking]

I think I would write to the head and explain that his behviour (getting lunch box out after you had listed the contents) was humiliating and unessessary. Explain you are already working with a diatician who is obviously much more knowledgeable then he is about the matters.

I do however believe that they are allowed to raise the subject of lunch box contents and food amounts though. It is n the child's best interest health wise and that takes priority.

[FolkGhoul]

I find it very sad, and somewhat incredulous, that in many cases the professionals assigned to support families in these situations have such little understanding, compassion or regard for the people they are working with.

Good luck amy I really hope you get the support you and your daughter need.

[amy175]

chops that is how she is too. she is so brave but will not pace herself and then they use that as proof of no pain

[amy175]

and what is worse folkghoul is that believe they know everything and wont listen to anyone else

[MrsjREwing]

It is not there, sorry, we are in the middle of the rolling eyes, doubts that we are telling the truth, not believed, put down too. It is important to stay away from that place, you will end up with damage being done to your child physically at least with weights, care removed and loss of custody of your child, in the present climate.

[amy175]

thats awful

[amy175]

is norwich ok ?

[MrsjREwing]

It is not just that place, at the EDS conference, it was revealed HV, Schools, GP's etc are gone nuts reporting parents for FII.

[amy175]

omg how awful. it scares me that anyone would do that.

[MrsjREwing]

No idea about Norwich. Just go to selected Dr's for now. Keep your head low for now. It is going to take a few years to get this mess sorted. GMC are on the case, along with Prof G and many others.

[DorisIsWaiting]

With regard to the not feeling the wee before it happens this can be completely normal in constipated children. Has she been seen by a continence specialist? DD had urinary incontinece as a result of faecal incontinence it took a while after clearing her out for her continence to return to what it was before the blockage if you haven't already have a look at Eric they hel[p with continece issues.

I really feel for you.

[amy175]

why though? its not like you cant prove they have it?

[MrsjREwing]

They relied on the fear and shame and it worked it kept people quiet, until two brave parents went public, then the extent of how widespread this was became clear as others then got the guts to say those two were not alone.

[amy175]

go whiuch showed the blockage had shifted, so now they think shes putting in on and no only a nurse from an enusis clinic no dr

[MrsjREwing]

I know.

As has been said arrogant professionals and some child protection changes.