FII?? school reported me to SS they don't believe invisible illness.

[Fossilywend1]

I'm so depressed. I have 2 kids WITH ASD and medical needs. We have EHCPs. They are now 17 and 14. 5 years ago we were happy and active, then I fell chronically and severely ill, and shortly after, my kids did. Initially diagnosed Lyme, then diabetes type 1, now I've been diagnosed with a genetic Condition, my sons likely have it. We have suffered gaslighting and lots of "it's all in your head" despite the boys being so so poorly. I thought school were supportive and on our side..
Found out today they'd reported me to SS for being too anxious and obsessed with illness. . Last year, they told son 1 he wasn't ill, just lazy. They refused to help and he was diagnosed with type 1 diabetes on the verge of a coma! . He didn't manage his GCSEs because no one helped us!
Son 2 complains of daily pain, but the same school are telling him he isn't ill, and making us feel like we have to prove illness. They literally grilled him and said "are you sure you're as ill as they say you are?"

I feel alone, and under threat if I'm honest. I believe my children when they complain of fatigue and pain. I have to help them, but how can I when fearful of getting reported.

I need advocacy, someone on our side. Who can help?

“Not ill, just lazy.” Oh god, I feel your pain, this is my life, except I don’t really have a proper diagnosis other than depression/anxiety and CFS/ME-type thing, and other oddnesses.

It sounds so tough for you, I’m sorry.

Doctors, family, friends, they all think I just need to try harder and get out more.

Oh op- this is awful.

Have SS been in contact yet? I would be very offended and hurt by this too.

I have a ds with ASD and I have fibromyalgia and other health problems. Pain and fatigue is relentless so I feel very sorry for your poor boy.

You say they have EHCP’s so I’m guessing moving schools isn’t really an option if they’re in the “best” provision currently?

Having a chronic illness doesn’t make you obsessed, it makes you knowledgeable about it and it seems the lines have been blurred from their perspective.

I would take a trip to your doctor to explain what has happened and get this noted on your medical records in case of any further referrals. Your doctor will be able to confirm your diagnoses and the boys too.

Take care

Unfortunately, yes, you have to prove illnesses. Get the certificate from thr GP for both, your sons and yourself.
Did your son have Diabetes 1 officially certified? If yes, they should help him with his GSCEs and make some allowances.

Painful to hear I'm so sorry. Yes, this is how we were treated when just DX with ME. I was insisting they were wrong and fought for us to be heard. So many people, esp children are let down in regards to invisible illnesses.

@EerieSilence thanks, not sure I was clear sorry. These accusations happened before official DX and when DS was symptomatic. They didn't believe or support and he suffered as a result now they are doing the same to son 2 who've they've said outright they dont believe. I want to change schools but perhaps that's also damaging as he's in final year. Son 2 has no diagnosis yet besides private Lyme diagnosis and autism.

Contact your local SENDIAS via the council - they should be able to support you. And SS may be able to give you and your boys some assistance. They are there to help. Hope things pick up for you all soon

A diagnosis by a qualified medical professional is a diagnosis, they don’t need to be by an NHS doctor.

I would request all medical records be made to school via and solicitor mainly dealing with education issues.I would also be contacting ofsted or which ever body best represents you with same letter and ask them
tolookinto the continued harrassment towards your family OP.It would be an expense and it would hopefully make someone sit up and listen and be accountable .Go on shock the pants off them and get some help.Someone needs to be answerable to why they think itis ok to treat you and your family so disgracefully.

@CuriousCapricorn thanks for being understanding. That's exactly it, I believe my sons and know what this illness does. I was originally diagnosed ME and fibro but had to fight to be listened to. I did it, I've been diagnosed POTS, MCAS, EDS. That's a 1 in 2 chance my kid has it but that's not for me to decide I guess, all I can do is help him get his voice heard but if they are reporting me then this is terrible. I don't feel like I'm overbearing and I'm always polite. Just trying to help my son. "well he looks fine, he was running about yesterday!" was what we got last week. They have a duty to help him and listen to what he's saying.