I don't think I am, but please be honest

[Hedgehog80]

Have a complicated scenario regarding dd1 (15). I've posted before about dcs health but dd1 has EDS, scoliosis, Pectus excavatum, CFS/ME, Pots and PCOS. Also now suffering from depression and anxiety due to her ongoing poor health.
She was not managing at school. Attendance v low and mornings are a particular struggle. She is dizzy, faints, is exhausted and in pain. Previously (up till December) this was morning routine:

645-7am try to wake dd
Usually either unsuccessful or she felt so unwell could barely do anything or herself-was rushed and she was unable to eat anything due to feeling so unwell
7-740am trying to help her get ready (plus the other 3 dcs with health issues)
745 am dh took dd1 to coach stop where she got the coach at 850am and by this point already exhausted and then could not complete a whole day at school and often had whole days off

Dh would then return and we would take younger 3 dcs to their primary school and dh goes on to work.

We decided to change things. To enable dd1 to have more time to get ready and eat breakfast etc we cancelled the coach for her. Mornings are now as follows
715 am wake dd1
715-8 am she can get ready slowly and not rush.
8 am we leave to take younger dcs to school. Dd1 often then manages to have something to eat and drink and she is dropped to school by dh at around 9-910am depending on traffic. This slower paced morning seems to manage her symptoms are bit better, often she's still very unwell butbweve had a few days where she had stayed all day at school.
The school are not happy and want her in on time or earlier and want us to change the routine that works best.....we would rather sacrifice 10mins at the start of the day for did being less exhausted and able to stay in school longer ?

I don't drive so not an option for us to do separate school runs and public transport would involve either 2 buses and a walk or 1 bus a train and a walk which dd would not manage.
I don't think we are BU? This works for us and all I want is for dd to feel slightly better in the mornings and stay in school longer

[icanteven]

If this is working then the school just has to suck it up. It comes down to making sure she has the maximum number of hours of education per week, and this system seems to be ensuring that.

Other solutions would be (and I realise some aren't necessarily possible right this second):

Home education

Change to closer school

You move closer to her existing school if there's some reason to keep her there

You learn to drive - you say you have four children with health problems? I personally can't drive, but it's fine with our lifestyle. You not driving seems to be incompatible with your family situation, as this situation is demonstrating with your daughter missing school because of it.

[confusedat23]

To all those people asking why 15 mins makes a difference, they may only be getting her up 15 mins later in the morning but this is giving her a lot more getting ready time, her parents leave to drop younger kids at 8am leaving her at home to have breakfast and a drink etc then come and pick her up meaning at a guess she probably has 45 min-1hour extra time in the morning than she did whilst catching the coach!

I understand OP and I think the school can disapprove as much as they like but just carry on as you are until April and see what the doctor says!

[FV45]

I am fortunate to not have children with any health concerns, so don't have much understanding of how schools accommodate these things, but from what I've just read about those conditions (I admit I had to look a few of them up), I am just astounded that the school are unwilling to be more flexible.

Is she just expected to fit right in with the school day?

[FatOldBag]

You are doing a great job OP and seem to have found a real workable routine to help your dd. I have ME and honestly some of the responses on here are irritatingly moronic - although I do appreciate if you've never experienced it, it would be impossible to understand. I think this might be the problem with the school, they think the problem is simply being a bit tired so you're giving her a 15 minute lie-in; they have no fucking idea what the nature and extent of ME-related fatigue is or how to manage it. I would ask her ME specialist to write a letter of support specifically for the routine you have in place now. They will take her medical needs much more seriously if they hear it directly from a medical professional.

[Hedgehog80]

I e been having lessons for a long time and failed my test twice but am still trying

[Hedgehog80]

Her consultant did write about the CFS/ME and we've had various letters about EDS and Pots.
I think they are just conditions that are not well understood so the school need reminding frequently of the impact it has on dd. It's very frustrating

[rainbowdash888]

When you say the school isn't happy who have you spoken to? Can you see her pastoral head of year/house in conjunction with a member of smt with overall responsibility for pastoral care? I would be they would agree to this under the circumstances of her health.

[FatOldBag]

I'm sure they've seen lots of evidence of the medical conditions, they just don't accept that your current routine is medically necessary or helpful to her health. You need the specialist to specify that your dd needs this specific adjustment to manage her ME.

[TENSHI]

You know her best and you and your dh are doing a brilliant job, she sounds like a very intelligent young lady and because she is doing well academically I think you need to concentrate on the positives when you talk to the school.

With every letter/email you send them about your dd, cc it to the Head of Governors, the Education dept at the local authority and her gp/hospital consultant/s.

Not only are you managing very well with your dd's needs you have other dc with special medical needs too and I think you and your dh make an absolutely fantastic team.

Please keep doing what is best for her and don't change a thing if it's working well.

[Justwantcookies]

I e been having lessons for a long time and failed my test twice but am still trying

Try an automatic, much easier! You'll get there!

Until then the school is being unreasonable and you'll have to tell them that unfortunately. if your current setup is working, stick at it

[Hedgehog80]

We have been meeting with the senco/head of pastoral care at they've tried their utmost to make us change this morning routine. I had to tell them firmly that until we have had follow up and treatment started and there's an improvement I won't reassess things

Thankyou for all the kind comments it means a lot. Feels like we are always struggling and the support and advice is appreiciated

[Hedgehog80]

Yes-I changed to automatic ! Getting there but slowly

[Greyponcho]

In reference to the pain she has, I can definitely recommend she doesn't use caffeine, as it decreases pain threshold (feel free to check this in medical appointments).
Also, make sites she's been tested for every allergy going which can make such conditions worse.
Meditation may also help a little with the sleeping/anxiety.
Your poor DD, life must seem really shit for her, seeing her friends being able to do so much, has she tried counselling for the depression?

[Greyponcho]

*sure not sites

[1AnnoyingOrange]

Maybe the school are looking at it from the point of view of the 1st lesson. If she arrives 5 mins late when they are just starting into work, then has to open bag etc it may disrupt the lesson for 29 other children 5 days a week.

I do think your regime is the best for your whole family. Getting ready before setting off to get coach 7:50am is exhausting and school starts a full 1 hr 15 mins later and for her time would be better spent slowing down her morning. I wouldnt be putting her back on coach.

Have you looked into taxis? Does she get mobility payments for DLA? Or Local Authority help? (prob not helpful/just my wishful thinking/ but just incase it was possible).

[Hedgehog80]

We are awaiting CAMHS and health psychology as she's very low

Dd avoids caffeine. She follows a very healthy diet amd pays close attention to everything she eats and drinks as hopes (like that Ella) it will help her symptoms. I e been impressed recently how healthy her diet is she's trying her absolute best

[Hedgehog80]

She had a taxicard but it was taken when she went from higher to lower mobility DLA rate so do not have the use of that anymore unfortunately

[Canadalife]

We have a 15 year old who was diagnosed with CFS at 7 yrs old. she has struggled over the years to attend school. happily now doing v much better and on track for GCSEs etc. I would suggest AYME if you have not been in touch they are an organisation for young people with ME/CFS. They can help young people stay in touch. pacing is totally the way to go with the ME. Our daughter was treated from Bath and I remember things on their web site.

I have learnt over the years to fight for DD. We changed schools at 13 to a more flexible school that would support rest breaks and understand about time off.

Hang in there it is very tough as a parent and for your child as well.

[TheOnlyColditz]

They should just accept this and I guarantee it's about her missing registration. The attendance figures for a school now affect the ofsted result and as such an otherwise good school with poor attendance due to disability can be downgraded significantly.

I have an issue with Ds1's attendance - he gets nervous and vomits (various neuro/anxiety disorders). They send him home. He has to wait 24 hours before returning to school. This happens almost every Monday. His attendance is at about 82%. If they'd just accept that a nervous stomach isn't contagious, and just support his anxiety instead of isolating him in repro with a sick bowl, he'd be better in 20 minutes. As it is, I'm getting letters from the attendance officer

[Hedgehog80]

Thankyou canadalife I will look that organisation up. Glad your dd is doing ok that gives me hope ! I just want dds appts to come through so she can get the help she needs

[1AnnoyingOrange]

PS sorry if my post sounded harsh!

My main thought was how fantastic she is doing by keeping up with work and brilliant that she keeps trying to go in, and trying to be there as many days as she can. I remember being late for school all the time as a teenager with no good reason and I feel guilty now, just reading what she deals with.

[brasty]

YANBU. Your DD has a range of complex health problems. Just one of these conditions, such as POTS, is very difficult to manage. I agree it is better socially to keep her in school. And you are doing everything you can to enable that.

I wouldn't worry in terms of future employment. You need to focus on what helps your DD at the moment, and I can understand how a long relaxed start to the day makes a difference to POTS.

[IamFriedSpam]

I would discuss it with whichever medical professional is seeing her and have them write a letter to the school. If ten minutes late = more total time in school then of course that's what she should do. School need to make allowances for people with medical conditions or special needs.

[SomethingBorrowed]

Of course YANBU, you have a lot on your plate at seem to handle it well.

Maybe the school are looking at it from the point of view of the 1st lesson. If she arrives 5 mins late when they are just starting into work, then has to open bag etc it may disrupt the lesson for 29 other children 5 days a week

This is what I think as well. From their point of view, you just need to leave the house 10min earlier.

What happens between 8am and 9-9:10 when she is dropped off. Could the 10min be spared then? And/or could your DD eat something in the car?
Would this change really be more stressful than the stress your DD must feel when she arrives in the classroom and has to settle in while the lesson has already started / everybody is therefore looking at her, etc.?

[Canadalife]

You are welcome...we know from experience that it is very hard for everyone. Ayme has a useful section on education that might help. My DD is now full time at school, but does not do PE, languages or IT. The idea at this stage was to allow her to get the basics to move on to the next level of education i.e. 5 GCSEs. She has breaks through out the school day. She needs more days off that normal and I have a close relationship with the attendants office! but she is doing well overall.