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?

[MrsjREwing]

So so many parents with or with children that have this condition are treated like shit by professionals, it is chronic, at the recent EDS conference the explosion of false accusations of FII was shocking. They are a rare condition and FII is rare, it is going to be increadiblt rare that so many HMS EDS people are inventing dislocations etc. FII mhbp was invented by Roy Meadow and his nonsence is taught in child protection.

[amy175]

how much is a private appointment? struggling to fill in dla forms at the moment as i'm finding it overwhelming. I also have an autistic teen who recently got run over and damamged her leg babdly and i broke my spine in jan in an accident too. so things are quite bed here to be honest. aND MY OH IS A SELFISH TWAT MOST OF THE TIME

[amy175]

just realised that was in caps but lol i do need to shout that !

[amy175]

what is FII?

[saintlyjimjams]

God, the nurses sound dreadful.

I think you do need a professional on your daughter's side here to ensure that people understand the physical issues she is facing. Do you have a good paediatrician already, if not it would be worth trying to see someone.

[MrsjREwing]

Go make an app with prof G for you too, private £300 each, though as you are over 13 Prof G will see you on NHS.

[youarewinning]

Amy How is your DD's communication? Is she also able to talk freely and confidently about her condition without embarassment for her?

I am wondering if she should attend these meetings too. They are about her and at 8yo she should and is entitled to an input in her care. There is a document somewhere - and I'm sure is governmental and not LEA specific about children aged from 8yo being responsible and managing their own medications etc in schools, or at least being encouraged too. Therefore I'm wondering that if she had the responsibilty for going to them and asking for pain meds if/when she needs it instead of a regular dose? they would see that she notices it. She can also explain herself that she see's no value in complaining about something she cannot change, but she is asking for support from GP's/ nurses to help her manage it. My DS is year 4 and I would feel happy for him to speak out for himself if needs be. ATM he is just starting to ask for meds for his allergies when he needs them and I think having some of that 'control' is empowering him a little.

With regards to the HT, perhaps a short but sweet email.

Dear HT,

I was a little disappointed to discover that you felt the need to present DD's lunchbox to the meeting when I had already answered the request of it's content aurally.
That lunch is DD's and should be treated as so, and treated the way you would all the other children's lunches.
There is so much information we need to discuss at these meetings that I am sure you'll agree 'showing' proof of what I was saying was correct only serves to waste precious time and therefore it won't happen again.
If you need any further information re DD's condition and how this affects I will be more than happy to provide it.

Yours.....

Basically says - Fuck you twat - I was telling the truth - your stunt proved nothing - and you'd be better off discussing how to support my DD than trying to prove me wrong.

[amy175]

no crap pead too

[MrsjREwing]

I gave my dentist my Prof G letter, the bastard ignored the advice and ignored me crying with pain and accused me of being silly and anxious, he only took anxiety from the letter and ignored the bit about anesthetic not working the same with EDS people. Don't hold faith in a diagnosis OP.

FII is munchousens by proxy thing.

[OhThisIsJustGrape]

You sound like you desperately need someone to act as advocate for you in these meetings.

Contact your local Parent Partnership (each area has one, google should give you the details), they will support any parent who has a child with SN. They will also come to meetings with you to support you.

Also, is there a support group you can join for parents whose children have the same SN as your DD? Often groups such as these will have someone who can attend meetings with you and they can be quite assertive as they know so much about the specific SN. I am speaking from experience with ASD support but I'm sure it works the same with other groups.

You don't have to do it alone, take someone who will help you stand up for yourself. The HT was out of order and the nurses were equally unprofessional IMO. Good luck.

[MrsjREwing]

Do not go near GOSH with a HMS or EDS child at present.

[amy175]

thats a great email, thanks. i was afraid i would be too angry or cry if i tried to talk to her about it.

my dd feels for whatever reason that she can't say she is in pain. i real problem as they just assume she is not in pain. she tries to play and do stuff like everyone else but they take this as proof of no pain when i thionk she just thinks fuck it im in pain so i might as well have fun at lunchtime playing with my friends even if im going to pay for it with pain.

she really can't commnuivcate her feeling well. i have to ask her if shes in pain to get an answer she wont say it out right

[amy175]

why not gosh?

[amy175]

i must apologise for my typing but my finger joints are playing up too!

[youarewinning]

Amy IMO your doing the right thing. Why do they think a 9yo would 'want' to wear a pad? They have a duty of care to test her and find out what is happening/ why she has no feeling etc.

I can't remember the name (want to say ACE?) but that is a tube put into tummy that allows urine and stools to be released from. I don't know much about it but do know of a few children who have had it done and said it's life changing. But whatever is done to help your DD they should be doing something other than trying to humiliate her.

[Serendipity30]

OP can i suggest next time you take someone in with you for moral support, even if they just sit there with you. I think they sound very unprofessional. Dealing with professionals can be very intimidating.; Are any of them approachable? Also i was thinking if there issues you want to raise in the meeting. You could write the main points down before each meeting and let them know at the beginning that there are issues you would like to raise. I think you were right to be upset as if they don't respect you with smaller issues when there are bigger issues they wont either.

[amy175]

the reason they aren't doing anything is that they don't believe her as children lie they said!

[edam]

poor sausage. I hope this thread is helping - the parents on the SN board here are hugely supportive and a great source of information and advice. It sounds as if you've been battered by ignorant and unsupportive 'professionals' and need some help standing up for yourself and dd. Many health professionals are bad at deal with pain, tbh - they under-rate it or ignore it. Which is wrong, but does happen. You need to challenge them, firmly but politely, and I'm sure you'll get the help here to do that.

Take the warning about Great Ormond Street seriously, there have been a number of questionable things happening there. Just because it has a 'name' doesn't mean it's perfect.

[MrsjREwing]

That is common behaviour for HMS EDS kids.

Not sure what I can say, other than, I think I can say about one case. Court apparently dammed a consultant there for false FII accusation on one EDS family, GOSH withdrew care from a child for a very long time, the child's health deteriorated. The child is now being cared for under Dr Ninnis and Prof Graham.

[amy175]

i asked the school parent support lady to come which she did, and she did say a few times that she was in pain and that she didn't show pain like other kids do so not to judge her by that but no=one was listening. i felt they had already decided what they wanted to put on the care plan beforehand and nothing i said was going to change that.

[bochead]

There's a phrase we coined over on the SN boards derived from my own reception experience for a certain type of professional *"The caring carrot"

(I also had a child being supervised by a clinical dietician, yet was forced to endure egotistical point scoring nonsense from school staff when my lad started reception).

The caring carrot is a professional who works with SN children who would rather patronise a parent than admit there is even the slightest gap in their own knowledge of ANYTHING relating to children. It's often an ego thing, which frankly has no place when dealing with SN kids, or their families, who have a hard enough time of it already. It's easier to make you feel like crap than to acknowledge even to themselves any knowledge gaps.

They are also known as a rather dangerous breed as sadly their arrogance all too frequently acts as an effective barrier preventing access to the specialist knowledge required to help and support many children.

I'm sorry that this has happened to you, but don't be suprised if this HT subjects you to further nonsense as the years go on. Develop a hide like a rhino and learn to rise above it for your own sake, or you'll go nuts.

Come over to the SN boards when you need to scream with others who understand. Also try to remember that for every caring carrot there's an absolute gem of a professional who is both knowledgeable and kind out there.

[youarewinning]

Can I ask what HMS and EDS means?

Also what have they said about the seizures? Surely they've provided something to help with the breathing?

[CailinDana]

Amy my heart goes out to you. I've taught in a few special schools and I could see that in order to get even basic help for a child with disabilities the parents had to fight and fight and fight. How they kept going I don't know -I can see how you would just feel totally defeated by it all.

One girl I taught had quite severe CP and could only say "yes" and "no." It was blatantly obvious to me that she could easily be taught to use a communication device so I asked the SALT why, at the age of 12, she still didn't have one. The SALT (who was new) said she'd asked exactly the same question when she met the child, to which the response was "she doesn't need it." So in their view, a person didn't need to communicate. How do you argue against idiocy like that?? Thankfully the SALT wasn't taking that sort of bollocks and in the few months I was there she made great progress on a simple communication device. The thing is, I know if that SALT ever left then that device would be dropped because the girl had no parents fighting for her (she was in residential care) and without that fight she would only ever get the basics.

[amy175]

so is dr ninnis the one i should get her too? my local clinic is at norwich who i see is from th hms newsletter is doing a trail of multidisplinary care. but of course wehave nevr been sent there. why i don't know.

[MrsjREwing]

HMS and EDS are dangerous conditions to have during the current witch hunt culture, be very carefull. Go see Dr Ninnis or Prof Graham.