DD Not Helping Herself, Leaving Her more I'll

[RockinHippy]

I'm tearing my hair out & feel like giving up with my DD15, who has hEDS, with PA & SPD, CFS, POTS etc as symptoms.

Like most of you I'm sure, I've been battling the system for diagnosis & help for years, much to the detriment of my own health (I have the same conditions & more). We also do a LOT to take the pressure off her as much as possible so she can cope better in school. No chores, DH dropping work for an hour to pick her up & bring her home as she feels so ill & exhausted. She's really struggling with the amount of homework & cries over it often, so again I trying to sort that out for her.

I had to fight for assessment for extra exam time as the SENCO wouldn't believe she needed extra time as she's very bright & after missing 2 years of school due to her health, she more than caught up easily in a few months. She's very ambitious, so needs good grades & we know she could do better if she wasn't handicapped with her hands & processing problems. Her OT agreed, so I pushed & pushed & was "that" mum. They assessed her & apologised as they were shocked at how much she did actually struggle, giving her 25% extra time & rest breaks.

She's also meant to use an iPad in school, otherwise as her OT explained to her the tension in her hands refers up her arm causing neck pain & headaches as well as hand pain & exhausts her more. We actually ended up buying her one just for school with keypad, as she wouldn't ask in class if the teacher forgot to give it to her.

But unless teachers insist, she isn't taking the help. She rushes through tests to meet the normal deadlines, doesn't remind teachers of the extra time if they forget. Leaves her iPad at home most days & hand wrote today's exam, with no extra time, which was a lot of writing, so she now has neck & headache.

I'm just not getting it, we've been through hell & back, I could really do with more help from her myself, but know she struggles so much just to be in school. She barely has any social life as she just sleeps when she's home. Often nodding off as soon as she gets through the door.

She's making me look like "that" mum for no reason. Her disabilities are usually invisible, so it's hard enough getting understanding, but Ive fought for her every step of the way & made people listen & understand. But right now I just feel like giving up & letting her get on with it & making her help more at home, because she is making things worse for herself & I'm paying for it with stress etc.

I don't get it, she's not one to follow the crowd, she's very much the " indie" kid who dresses in her own style rather than follow school trends etc, so she's not afraid of standing out as different.

I've just lost my rag & took her phone/laptop etc off her & told her to make her own tea as if she's well enough not to need the help organised for her at school, she can pull her weight at home as I'm too ill too carry her if she doesn't need help. But if course I feel rotten for that ☹️

Have any of you been through this & have any tips on how to cope/get through(bar jumping on a flight somewhere & buggering off & leaving her too it) She's jeopardising the grades she wants & needs for the sake of I don't even know what. I can't get anything out of her bar dirty looks, eye rolling & tears if I push her to talk.
Help 😐

Update...

Break through in that she's finally opened up as to why she is acting this way & it explains a lot as her not helping herself runs a lot deeper than this.

She doesn't take supplements that she knows either help her or she has to take because of the B12 treatment she is on. She's funny with food, in part due to her SPD, but even though she loves her veg & salads etc, she eats less & less of some food groups We identified that her worsening exhaustion & low immunity was due to her eating very little protein, we sat down with her & googled what she needed to eat for her body weight to show her just how little of that amount she ate, she agreed that she understood, but still doesn't eat anywhere eat enough. It's not a weight thing, she's not unhappy with her body, she happily eats pizza or cake etc, but she likes healthy foods. Lots more examples.

She's just now told me that it's her body, she knows it best & if she's having a good day, then she doesn't need the help at school or anything else, she refuses to understand that these things are in place to stop her crashing afterwards & becoming more ill. She ran herself into the ground a while back, ending up with back to back viruses & a bad flare up. She was so ill the day she took her maths test that she did really badly, she burst into tears when she got her results.

She just doesn't get that if she had paced herself better & used the help in place for her in school more, that all could have been avoided. Her answer to that. I'm not her, she knows her body better, fine to a degree, but I've learnt the hard way that you can't fight this & the condition is what it is, you have to work with it, not fight it to survive. I just can't get through to her ☹️

Any advice gratefully received

Anyone 😐

Sounds like a teenager to me. I don't have any answers OP, but I think it's really difficult for families of children with long term conditions at this stage.

She just doesn't want to be seen as different to her peers.

There will be snide comments at school about how she is 'favoured' by the staff etc. kids that age do not see her being helped, they see her being given an advantage of an easier ride through school.

The crash and burn - she just needs to find it out for herself, it's one of those things that no matter how much you try and guide them, they have to experience it for themselves before they realise they can't do what their peers do. It's a horrible life lesson to have to learn.

It's also the whole coming to terms with the realisation that they can't do things their friends can and feeling so frustrated about it.

It's not a rejection of your efforts when she won't use the ipad or ask for extra time etc. it's just her not - yet - wanting to accept she's different.

Hang in there, don't criticise, just be there to pick up the pieces and support. I know how difficult and frustrating it is, but it's something she has to find out for herself by experience. Been there.

Thanks for the replies. Frustrating as it is, I guess you are right, she's mostly a dream teen in other ways though, so it's really soul destroying to see her risking her health & rebelling in this way, but it makes sense when you put it that way

I'm wondering as it's affecting her schoolwork & means she misses more school too if I should be letting her school know

Chipping in a bit late here but my eldest has Classic EDS (with all the usual extras..POTS CFS etc etc) and it has taken a long time for her to learn her limits.
My DD1 like yours was (is!) bright and academic and a very able pupil and also a bit of an idiot over her own health (not saying yours is..but mine definitely was) She staggered her way through school, partied through 6th form and went to medical school aged 18 , skeletally thin, and passing out way too frequently. She nearly didn't survive her first year as she also became anorexic from the stress, but she did recover with a lot of support and in her second year started to slow down ...also she made good friends who MADE her take care of herself better.
Fast forward a few years..she's just turned 26, is a doctor, but working part time as she simply can't manage full time. Physically she is not great... she's now on a ton of meds to regulate her heart, stomach, blood pressure, etc etc she sees an EDS specialist regularly , most of her is splinted, and she has physio and hydrotherapy. She is DETERMINED to keep going, but is going to train as a GP as she should be able to continue even if (when) she needs a wheelchair.

But if she had paced herself better in her teens , I suspect she wouldn't have deteriorated so fast, EDS is a bastard as the effects sneak up.

I would definitely let school know!

What is PA and SPD?