Active discussions

Meet the Other Phone. Child-safe in minutes.

Meet the Other Phone.
Child-safe in minutes.

Buy now

Please or to access all these features

Talk
AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

Original poster

AIBU to be gobsmacked that DD2's Headteacher told her to stop pretending to be ill when she has chronic fatigue.

206 replies

go8smacked · 30/09/2011 21:00

DD2 has been suffering from fatigue for nearly 3 years and is under the care of a paediatrician. School know this and that he will be writing to them to discuss how to manage her fatigue.

Today DD2 was very tired, paediatrician has advised that she needs to go to school but we need to moderate her activity, so I send her to school but go in at 11am to check on her. I can see that she is tired as she is self-soothing (she is always tired to some degree) and when she sees me she pleads to come home. Her teacher (also the headteacher) starts to tell her how she has been fine all morning and to stop making me worry ?!?!?!?!? I'm not happy about leaving her but I don't want to undermine her in front of the now assembled crowd of children. I tell my DD2 that I think she should stay for lunch and that I will phone the school after lunch to see how she is. DD2 is not happy but accepts this.

After lunch it takes 30 minutes before anyone even picks up the phone. The secretary goes to check and comes back to say DD2 has not complained again of being unwell. DD1 & DD2 come home. DD2 say's no-one asked her how she felt but that the headteacher spoke to her about how it was important not to pretend to be ill Shock DD1 says that DD2 was tired at lunch and had to sit on a bench.

I cannot believe that the headteacher has basically accused my DD2 of hypochondria - DD2 was laying it on a bit thick when she saw me but I could see that she was tired.

I have had ME for over 20 years and so I am well acquainted with the symptoms and how people just can't 'see' that you are unwell. However the headteacher knows that DD2 has had extensive tests and regular hospital appointments. I also made a point of updating her medical records to show that she is being assessed for chronic fatigue.

I can't believe that the headteacher has taken DD2 aside and told her to stop lying about being ill. I know I need to speak to the headteacher but at the moment all I want to do is remove all my children from this school.

OP posts:
Original poster
go8smacked · 30/09/2011 23:00

peterpan99 I am so sorry you have an unsympathetic Dr - I had originally too. I changed Drs until I found one who would refer me to a specialist who then diagnosed me after 5 years :( ME/CFS is now a recognised disability and covered under the Equality Act (used to be covered by the Disability Discrimination Act) and so I would be very sceptical of any Dr who denied it's existence. I hope you find someone more sympathetic soon!

OP posts:
worraliberty · 30/09/2011 23:01

And I repeat my question...why not lean on the paediatrician to hurry up the discussion with the school?

ILoatheMickeyMouseClubhouse · 30/09/2011 23:02

squeakytoy I don't think that go8smacked is going to enlighten us about the self-soothing I'm afraid

Original poster
go8smacked · 30/09/2011 23:02

I don't want to say exactly what the self-soothing is as it will identify her but it is an action that she used as a baby when tired to soothe herself to sleep. Some kids would suck their thumbs to self soothe.

OP posts:
yousankmybattleship · 30/09/2011 23:03

go8smacked - just a thought, but if you went to bed at a reasonable time instead of arguing with strangers online at 11 o clock at night maybe you'd have a bit more engery. Maybe you'd be a little less hysterical about your DD too.

captainbarnacle · 30/09/2011 23:05

Well I used to rub myself up on infant school desks when I was 5 - that kind of selfsoothing? If so, it's a coping mechanism which is working and doesn't need a massive reaction to it.

Original poster
go8smacked · 30/09/2011 23:05

worraliberty - we saw the consultant last week. I think we might upset him if we pushed him after a week. He is a hospital paediatrician and so will be dealing with children who have life-limiting illnesses etc, I would never ask him to put my daughter before them.

OP posts:
Conundrumish · 30/09/2011 23:06

OP I can't believe the replies you have got. Clearly from people who know nothing about ME. I don't know much about ME either, but I do know that some treatments insist that sufferers regulate their activity and are only allowed a few hours at school a day, gradually building up. Surely the whole point is that you shouldn't push your body until it is near breaking point. I think your head's attitude stinks and I hope you will tell her that.

I have noticed a few people on here talking about a Paed called Esther Crawley, who seems to get good results with ME in children (she is the UK specialist).

cardibach · 30/09/2011 23:07

I really doubt that whatever she is doing os so unusual it will identify her! We all do things that 'feel nice' when we are sressed or tired. It doesn't mean we aren't coping. Make sure that she can say when she can't cope and leave it at that.

Conundrumish · 30/09/2011 23:08

By the way - I would re-post in 'Health' - pretty much everything seems to get jumped on here.

LineRunner · 30/09/2011 23:09

The OP refers to subconscious self-soothing so not thumb sucking I would say.

worraliberty · 30/09/2011 23:09

She's been suffering for 3 years and has only been under a paediatrician for a week? Confused

Has she actually be diagnosed formally with anything?

If she has, then why not get the person who did the diagnosis to contact the school re your DD's care?

Surely that makes more sense than moaning about the Head Teacher handling it all wrong when she's not been spoken to about your child's condition by someone other than you?

cory · 30/09/2011 23:09

It might be an idea to have a chat with the paed's secretary though, go8smacked. Even if he isn't able to come and visit the school he may be able to send them a letter explaining your dd's needs and how they should be tackled. The school has responsibilities to meet your dd's needs but for them to be able to do that they need to know what those needs are and they need to know from a proper qualified professional. That the pacing is done right could affect your dd's whole life so is definitely not something you need to feel guilty about.

And you need to see the Senco to discuss a plan of action anyway.

BerylStreep · 30/09/2011 23:10

OP, I think a lot of people are being very unkind.

Yes, 5 & 6 year olds can play up in terms of illness - I have a DD that age myself, but as a parent, I know when they are playing up / manipulating and when they are not (more often I under-estimate when they are ill Blush).

I would be annoyed if I thought that school weren't looking out for my DC when they were unwell. You know your child best.

captainbarnacle · 30/09/2011 23:11

I do know that some treatments insist that sufferers regulate their activity and are only allowed a few hours at school a day, gradually building up.

That's a good plan - and it should be organised like that. For example, DD2 goes in 9-12 for a couple of weeks. THe school knows where they are, DD2 knows where she is. And she cannot manipulate her way around it.

DS1 (5) had a sorethroat this morning. I didn't go in at 11am to school to check up on him - if he'd seen me, he would have remembered and whinged about it again.

You need to properly manage DD2's fatigue with a proper structure. Your complaint about the HT is just a smokescreen.

Original poster
go8smacked · 30/09/2011 23:12

captainbarnacle how many times do I have to say that this was the FIRST time that I went into school before you get it into your thick shell? Confused BTW it appears that you are the one that needs constant attention with your continual inflammatory posts. Perhaps it is you who are the needy one. This is the last of your comments that I will be responding to.

OP posts:
Whatmeworry · 30/09/2011 23:12

Has she actually be diagnosed formally with anything?

Tuts...

ImperialBlether · 30/09/2011 23:12

She called it 'subconsciously self-soothing.'

I have no idea what that means.

garlicslutty · 30/09/2011 23:14

cardibach, the child will have to be taught how to monitor her condition. 5yo is ridiculously young to have to learn such things. I got my diagnosis 4 years ago and am still struggling with managing it - how tired is "too tired"? Five-year-olds can't tell when they're too tired at the best of times!

The syndrome is a problem of energy creation. It's like running on a worn-out battery. If you wait until you fall down from tiredness, it take ages to 'recharge' which would probably mean the DD missing school altogether. I don't know how you'd teach a child to observe her own status without turning her into a wimp, but am interested to learn - have already decided I should watch out for my own 'self-soothing' tics and treat them as warnings.

squeakytoy · 30/09/2011 23:14

A lot of 5yo's are tired when they first start school.. it must be very difficult for a teacher to be expected to become an expert on checking one particular child.

captainbarnacle · 30/09/2011 23:14

? I am actually being quite polite.

Original poster
go8smacked · 30/09/2011 23:14

worraliberty it was a week ago that the paediatrician told us that he would be writing to the school.

OP posts:
worraliberty · 30/09/2011 23:16

Ok

Has your DD had a formal diagnosis of any kind?

If so, have you given the school a copy in writing?

Have you approached the SENCO?

What action plan is in place?

ImperialBlether · 30/09/2011 23:17

OP, you seem to contradict yourself.

You say, "I also spent years being labelled a hypochondriac despite being bedbound and unable to stay awake for more than 2 hours a day."

Then you say, "I don't get any attention because very few people know I have it and I fight it every day. My children don't even know that I am ill."

Those two statements contradict each other.

Then you say your daughter doesn't know she might have a problem. How could she not know? You've said she has hospital visits. Why does she think she's there?

eaglewings · 30/09/2011 23:21

Go8 I understand that your dd needs to come home before she us too tired but it's hard for those who dont have a friend with ME to get this

I also feel for you when people accuse your dd of copying you. It does sound as if they don't believe she could have ME or know what it involves

As for not being allowed to stay up after 11pm - do we have the ME police out tonight?

I do have ME but I'm also still awake!!!