To be furious at headteacher?

[paradisecityx]

Hey.
My daughter is in year 4, she is 7 years old and has IBD (ulcerative colitis). This is an autoimmune condition that will be with her for life, unfortunately.
She was diagnosed at 3 years of age and it has recently flared badly and her meds she was previously on aren't controlling it anymore.
She is now taking a medication that's a complete immunosuppressant.
This obviously concerns me with her attending school but we're trying to keep life normal as can be for her.

I spoke to her head this morning and asked if I could send in some hand gel & some hospital grade wipes for her desk and chair, that my daughter can use to wipe down her working area just to try** and minimise her chances of catching illnesses back to back.
Her head teachers response was "well kids touch everything so there's not any point, but if it will psychologically make you both feel better then yes as a lot of it is in the mind'

AIBU to be absolutely pissed at this? I'm trying to decide how to deal with this as in my opinion, it's completely unacceptable and cunty. My daughter is on a medication that's used for chemotherapy to try and save her bowels and that's pretty much explain how little her headteacher understands (or cares for) her condition. I was tempted to email (they have 2 headteachers over the federation) the other and see what they think of this, but don't know how to go about it.

I'm so angry for you and your DD! Would they have said the same thing if it was a child receiving the same treatment as your DD, but for cancer? Doubt it! Even though your daughter will face the exact same problems as anyone receiving the chemo. Why do some conditions receive more sympathy and help than others? It boils my piss.

I actually made a post yesterday to rant about the struggles of being immune suppressed and trying to live a "normal" life with the constant illness coming at me from all angles. It's honestly impossible and your DD's head teacher's attitude towards chronic conditions is one of the reasons why we struggle so much.

Your dd has my sympathies. I too am receiving chemo for my lupus and I'm really struggling with the constant illness and bugs from the supressed immune system. I can't even begin to imagine facing this as a child 💐

Please look here and give the guide to school and involve SEN. Her response was appalling.

https://www.cicra.org/how-we-can-help/schools-and-colleges/resources-for-schools/

Sorry I'm a bit knackwfsd and half reading - which med is she taking?
It's a bit inequitable that she's not given a proper overview of her condition and the drugs she needs to maintain her condition. These drugs can be bit harsh and if they affect her immune system then she needs surroundings that to try to ensure she's ok. Have you asked for an assessment of her needs or an EHCP?

If he meant the "all in the mind" comment as in her illness is all in her mind then I wonder if he's mixing it up with IBS, which can often be triggered by being nervous or worried or whatever. He either needs some education on what IBD is or he needs to word his emails more carefully.

Aside from being rude, I think he has IBD confused with IBS. An attack of Ulcerative Colitis doesn’t come on just because you felt nervous about a test.

I think I’d be more direct with the head.

(Daughter’s full name) is diagnosed with ulcerative colitis and undergoing treatment through x hospital. The treatment involves the use of chemotherapeutic drugs commonly used for cancer patients. As a result, she is immunosuppressed and at heightened risk of infection.

Ulcerative colitis is a serious autoimmune disease. Complications include bowel surgery, loss of bowel function and death.

This is a physical disability covered under the equality act of 2010, not a mental health issue on either my daughter’s or my part. I would ask that the school treat this with the utmost seriousness.

Please inform me of what reasonable adjustments the school is able to make to endeavour to keep my daughter safe.

Y/S

Does your dd have a healthcare plan? She really needs one and that should be disseminated throughout the school.

It doesn't sound like school is the right setting for your daughter at rhe moment, wips and gel won't do enough. Her own desk is easy to keep clean but what about the rest of the school, where she ears and plays? Having her wonder around the school wiping everything before she touches it I agree with the head is damaging.

Schools do have care plans but they will need to also consider the use of chemicals affects on other children along with your own. How will the wipes and gel be stored.

There is a lot more to this than sending your child in with wipes and gel to wipe a desk.

I'd definitely complain and double down too. Since they said the wipes and gel you suggested wouldn't be enough to keep her safe, then they need to sort out a plan with you that will work keeping your daughter safe in school.

Have you considered OP that the head wasn't saying her condition is all in her mind? You've avoided that question despite suggestions.
You could end up over reacting to something that the head didn't actually say.

@paradisecityx my son has had crohns since he was 8. He started on azathiorprine and then went onto infliximab, which he is still on. I just want to reassure you that children manage really well on these meds. My son rarely caught any colds or infections. The only things that kept him off school were the flare ups of his crohns. He has never lost his hair either. He has a really thick head of hair.
He is now 24 and working, and again, rarely catches anything.

It is so hard dealing with this in a young child, and it can be frightening at times. By all means give your child hand wipes to use for things like meal times, but don't make a big issue of it.

The head obviously didn't word this well, and I would put in a complaint about their attitude.

I agree with this too. I have UC as an adult and really sympathise with you and your DD; it is a horrendous disease, especially for a little one. I assume she's on Azathioprine or Mercaptopurine. I was on both for years.

I obviously wasn't at school, but had a primary school child and 2 toddlers at nursery during that time. FWIW, during those years I didn't catch anything from them more serious than a cold and a stomach bug once.

Has your DD had her routine childhood vaccinations, chicken pox, etc, prior to being on the immune suppressant?

How? You can’t stop 30 children from carrying germs.

The first bit is factual and OK but the condescending 'a lot of it is in the mind' is not.

I wouldn't go nuts but would send a 'Due to this comment, I'm not confident you understand the nature of DD's condition so please ensure all staff are aware' email, with a fact sheet attached.

Maybe she didn't insinuate the disease is in her mind, but I don't think cleaning something is in the mind. If you clean something, you clean something.
Her tone was rude and dismissive, regardless.

My friend with IBD has had to home school her kids, initially it was in relation to their autism, but when she had a bad flare up it became really important that she didnt get exposed to anything too. She has periods where things are better than others, but when things flare up she has to be really careful what she's exposed too.

It's likely there's a home schooling community in your area, my friend found other home schoolers through FB. There's a real community to it. They have regular catch ups, she's made some good friends for herself and her kids have made good friends too. A lot of the kids are ND or have other SN or disabilities or illnesses. They're the kids the system fails the most often.

It's so hard juggling all the balls being a carer. Sort of silver lining being sick it's not such an issue when your kids are off school all the time. If I'd been well enough to work I would have lost my job by now because of my kids needs. I sometimes think the only different between home schooling and not when your kids have additional needs is what your school is like. My kids school isn't great, but they're good enough that I haven't had to home school like lots of then other parents I know who's kids have SN. I'm sorry for what you're both going through,
and that school sounds appalling.

I think she meant the benefit from the cleaning is mostly in your mind, not in reality because of the nature of children touching everything else. The desk and her hands being clean won't protect her as much as you think. I think that's what the head was trying to say. Remember you're adding workload to the staff by asking they do this, and the head has that in mind too. If you're adding workload for little actual benefit, the head is right to comment. I agree they could have worded it better.
Her tone may have been dismissive however remember they have to deal with hundreds of different requests every day. They're only human too and can be caught off guard or after a particularly difficult interaction with another parent. Try not to take it to heart.

Head teacher did not suggest that the illness was psychological . She say that using wipes in a limited area might may the mum feel psychologically better.
I’d afraid that she is completely right. The desk area is such a tiny area of the school - that it won’t make a blind bit of difference.

I’m sorry that you see this as her being unkind or not understanding but I think she is just being pragmatic and honest. Let your child have as normal a life as possible. Wiping her desk won’t change anything but will make it obvious to classmates that she is different and will make DD more anxious.

The head is right though- cleaning a hard plastic chair will be of minimal use in reducing infection risk. I wouldn't want alcohol hand gel freely available in a four year olds class - poisonous if drunk which there is a risk of with very young kids.

Asking them to regularly reinforce handwashing after using the toilet and before meals (for all students and staff) would be much more useful.

Have to agree with this.

You want to feel you have tried everything, of course you do. What you’re asking is unreasonable because the protection it offers is negligible. Someone literally just needs to brush past and touch the desk with their unwashed primary school hand.

Sorry.

He’s right, but rude.

sorry your daughters dealing with this, it’s a little understood condition that can be debilitating and I can understand why you’re very anxious

Sounds like the headteacher was rude and abrupt. Have you had a proper meeting with the class teacher about the child's condition? They might be the best one to approach rather than the head as they are the ones with your child each day.

I do get that maybe they were also just thinking that wiping their own area might actually not be worth the effort, kids swap chairs, kids touch all kinds of things (we share pens/pencils in a pot for example, not sure whether you provide your own resources), when it comes to handing out books we often have children do that too so would you want to discuss that with the teacher and having their books separate?
There are so many examples, so maybe they felt having wipes might be an extensive job and also distracting for the child.

This is impossible in a busy primary school. Most viruses are airborne so children transmit their illnesses via coughs and sneezes. What do you suggest they do to stop that - get kids to wear masks?

I interpreted it as the constant wiping down will reduce cross infection as being psychological because in reality it wont reduce it in a bust primary school.

I agree with this. Be very direct and ensure school complete a health care plan. Best wishes to you and your daughter x

She's on immunosuppressant chemotherapy (it's still chemotherapy even if it's used for something other than cancer), and you'd like to see the school's formal plan to keep her safe while she receives the education she is legally entitled to.

Home education is an option for parents and children who want to, but absolutely isn't something you should be forced to resort to because her school are too complacent to meet her medical needs.