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

[wannabestressfree]

Can you apply for a ehcp? Or at least get the ball rolling....

[mirime]

The school is being unreasonable. I had CFS/PVFS/ME (depending on who you ask!) and was often late as my parents would be unable to wake me up in the morning. That extra bit of time can make a big difference.

My school didn't seem to mind, but they might have just given up by that point (they were never very supportive).

[NoFanJoe]

Wow, that's a tough gig you have there. I think you should do what's right for your family - which I'd say is what you're doing. The school's position is understandable but that doesn't mean you have to go along with it.

[notangelinajolie]

I think you are doing your best and it sounds perfectly reasonable to me. Calm and relaxed morning approach sounds much better. Would the school consider a reduced timetable for her and let her attend fewer days?
I know you want her to be with other people her age but it sounds like she is really struggling - I would seriously consider taking her out of school and getting home tutors for her GCSE's. Poor thing. I hope you can sort something out to help her .

[shovetheholly]

Can she save time by skipping breakfast, or have something very light, and then eat at break time and again at lunch? I found this helped when I had glandular fever - not the same as CFS, though.

[SilenceOfThePrams]

Knock up a letter showing how her overall time at school has increased dramatically now that she misses those ten minutes in the morning.

You know this is working. If she has an ehcp, make sure it's on it. If she doesn't, make a formal request for one.

Apart from anything else, coming in for the start of the first lesson probably helps reduce the sensory overload that is otherwise the experience of arriving at secondary school first thing in the morning. That in itself is likely to be a source of stress and fatigue. In fact that may be a good angle to come at this from, that by missing the first 20 minutes she is avoiding the overload, and saving her energy for the learning.

You've found something which works. Don't let them take it away. If they end up referring you to the EWO over it, explain to them - they may be more accommodating. Especially when you show them how her overall attendance has improved as a result.

[Catrina1234]

I haven't read every page but can I say how calm and resilient you seem in the fact of having to care for your DD with so many health problems in addition to 3 other children. I think the school are being utterly unreasonable - it must be a Special School and they should understand that children are going to have a variety of needs and they should be considering (with you) the solutions. Why on earth does it matter if DD misses part of the first lesson. Have you had a meeting with the school to discuss this issue and hopefully come up with a suitable compromise but your DD's needs MUST take priority surely.

[MatildaTheCat]

This may be far too simplistic a suggestion but would it be possible to give dd her breakfast sitting in bed before she gets going? Having some food and drink inside her could possibly enable her to get going more quickly with less fainting etc. It would also ensure her blood pressure gradually adjusts as she moves from lying to sitting and finally standing.

I would also look at trying to get her washed and dressed whilst still resting on her bed then, when dressed and fed, getting up very slowly from there.

Worth a try? I think your adjustments do sound reasonable but school clearly aren't happy and more importantly, your dd is made to feel different if she arrives late every day and misses the morning social interactions.

[5moreminutes]

ctj with the combination of medical conditions Hedgehog 's DD has I doubt she'll be interested in doing shift work... With plenty of office jobs there is flexibility about start times in so far as you can agree to work 9:30-5:30 or 8-4 instead of 9-5...

I think it's more a case of Hedgehog 's DD needing to choose a career type likely to lend itself to flexible working / being able to work from home when she needs to, given that getting to school on time is only one part of the equation - she can't always manage a full day.

School is very likely to be being rigid because of automated registration meaning her arriving late is beurocratically awkward than for any human reason - employers in fields of work where as long as the work is done you are not micromanaged can indeed be more flexible. Hopefully as the DD is doing well academically she can choose a career she'll be able to have the flexibility she needs in.

[SootSprite]

I highly recommend you contact AYME (association for young people with ME) as they're very good.
You should also consider getting her seen by Dr Esther Crawley. She's the national specialist in adolescent CFS.

[Sunnysky2016]

No advice except to say I would stick with what you are doing. Could you get support from any CF etc organisations that could help you build your case?

[Greyponcho]

The school is being very short- sighted, trying to 'gain' an extra 40 minutes of attendance, which would actually likely result in more absent days - what's the benefit of that to their stats?
P.s. Good for her for looking after her diet and really really trying to get on with things

[minipie]

Fair enough brasty, apologies I was focusing on the physical issues and missed the MH issues. It's a difficult equation.

[brasty]

If she is already depressed. taking a year out of school away from friends will not help her. She needs to stay socially engaged, and school will make a big difference with that. It is why many terminally ill children still go to school.

[minipie]

I can't understand why the school are being so difficult either. I think you need to talk to the school more to find out why it's such an issue for them, and to explain why/how it makes such a difference to your DD. I am hoping more talking will help reach a solution that works for both.

I had a friend with ME growing up, she repeated an entire year at about age 14 (so left at 19 rather than 18). I have to say I'd be wondering about that in your shoes - so your DD takes a year out to focus on her health, sleep, exercise, any treatments the medical team suggest and then comes back and redoes the year. But I can understand reluctance to do that especially if she is settled with friends in her year. And I don't know how the school would react (my friend was at a private school so possibly more flexible).

[Hedgehog80]

8 am we leave the house and drive to dcs school. It takes 10 mins with no traffic but obviously schooldays there's a lot we get there usually 825 am and they can go in at 830am. Dh then takes dd immediately to school and again traffic is bad so she gets there 9 ish
She eats breakfast in the car

[LadyPW]

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 agree with this ^^. I can't see there being an issue (other than H&S from knowing DD is on premises) about her missing registration but disrupting lessons is unfair on everyone. If you can get her there on time for first lesson I can't say how they can really complain given her circumstances.

[Canadalife]

www.ayme.org.uk/

Found it!

[Stormtreader]

On an unrelated-to-this-specific-thing note, I have a number of friends with EDS and they have found that Pilates is massively helpful with their general joint pain/stability. Theyve also been medically advised that pacing themselves is THE most important thing they can do as trying to do too much will affect them badly for a few days afterwards. If your DD finds that the current routine is helping her feel generally better then its definately worth trying to keep to it.

[DeadGood]

YANBU OP. The school is being extremely myopic if they can't see that 5 minutes = higher likelihood of staying the whole day.

Learning to drive isn't that easy, either, is it? Good for you for changing to automatic. I was bloody-minded about "needing" to learn manual first, and I miraculously passed but it would have been a much easier process if I'd simply learned on an automatic. Then picked up gears later on if needed.

Anyway - that was a tangent. I would say "sorry, but this is what is working. You need to understand that if we go back to the way we were doing it, things will go back to the way they were, and that will be your fault."

Maybe suggest some statistics. Keep doing what you are doing for a while so they can see what the results are. If her attendance drops, tell them you will discuss other options. If her attendance is proven to have improved, well they can eat humble pie, can't they.

[RB68]

Would it be worth looking at whether the LA would fund a taxi for your DD on grounds of disability then DH isn't torn between two school deliveries and could be that bit earlier that traffic isn't an issue

[NotMyPenguin]

Is this something to do with how the school tracks absence? (e.g. do they count how many children are present in the morning, rather than for the whole day?) I just wonder if something bureaucratic is making them inflexible about this, as clearly your daughter is able to actually attend more classes this way so you would have thought they would see the benefit...

[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.

[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.?

[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.