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

[CremeEggThief]

I think the school are being unreasonable. Could you get something in writing from GP and/or specialists and ask the SENCO for a meeting?

Very unsympathetic posts from PurplePen.

[Areyoufree]

So, what you are basically saying is that despite a horrendous combination of chronic health conditions, which could potentially stop your daughter from attending school at all if she exhausts herself too much, you have come up with a workable routine. However, that routine means she gets in a little late, and the school are not happy. Your daughter should be commended for putting in the effort - I have known people with CFS, and if she is making school every day that is incredible. I can't believe how unsupportive the school are being.

[AshesandDust]

Your poor DD, I sympathise, I have CFS/ME too.
It's an awful condition for a young person to have.
Does your DD take D-Ribose, OP. I take this 3 or 4
times a day in coffee - half spoon of decaff half non decaff
mix.
I couldn't function without it - not that it makes the
the world of difference - just enough difference that I can
cope at home without being a bed bound case.
Your DD is doing well to cope with going to school at all,
I think the school is being very unreasonable. Can you get
your GP by asking him to write to the school?

[nbee84]

Could you drop the younger children to school earlier? Is there a breakfast club at their school? Maybe a friend that could help with the primary school run a couple of mornings a week. Then dd gets a sower start to the morning and dh can leave for her school a bit earlier.

[DoingThisRight]

What are their reasons for not agreeing op? Surely they are aware of her issues? Over 5 minutes it's ridiculous.

[PageStillNotFound404]

YANBU. I know from my experience as a carer for my disabled DH that conditions which are worse in the morning aren't easily rectified by something as simple as setting the alarm for 15 minutes earlier. IME all that happens is the feeling crap/no energy phase extends by the same account of time, and if the person is forced to get going before they've reached the point where they feel able to, it sets them up for a bad day.

Do you or could you get some medical evidence to satisfy the school that a slightly later start is in the best interests of your DD's health, OP?

On a purely practical level, does your DD have a daylight simulation/gradual wakening bedside light? My friend with CFS/ME swears by hers for making that part of the morning more bearable/manageable.

[SheRaaarghPrincessOfPower]

YANBU at all. Well done to your DD for managing to get to school as much as she is. It's obvious that this slower routine in the morning is helping her a lot. Is there any way that you can assure the school that she will always be there for her first lesson, can you'd DH take her just a little earlier or would that rush her too much?

I think the school should be more accommodating to allow her to attend as much school as she is able.

[ChicRock]

I have to say, I don't understand.

You were waking her up at 7am, now you're waking her at 7.15am.

You say this extra 15 minutes sleep makes all the difference, then you say no amount of sleep makes a difference?

[Hedgehog80]

Can't drop the younger ones earlier. There is a breakfast club but dd2 has type 1 Diabetes and other conditions and her 1:1 wouldn't be there. They can go in at 830am so we found it easier to do this way round it also is better for dh as younger dcs school furthest point them he goes to dd1 school which is on his way to work. He has had to change his working hours for this as well

[Laiste]

Can you have a word with Senco? Surely if you have a meeting and explained all this then they will be less rigid?

[Hedgehog80]

It's not the sleep that really makes the difference it's the pacing of the morning.
If she faints or is dizzy she can lie down again. She then sits in the car and can manage food and drink and the slower pace is less exhausting for her

[Floggingmolly]

Do they understand that there's a direct correlation between a late start and being able to get through the full day? And yet they're happy to send her home early every day, rather than agree to the late start?
Is it something to do with registration and attendance figures?

[Hedgehog80]

Unfortunately not, the meeting we had was with senco and they are very rigid about the mornings

[harderandharder2breathe]

For most employers a later than usual start would be a reasonable adjustment for her disability.

[ymmv]

The school are being unreasonable. I think her coming in later is a reasonable adjustment.

If she is so exhausted tho I would seriously consider reducing her timetable. I did less subjects than my peers to enable me to more consistently attend. - this meant some lessons in school I had free so would rest in the library or the SEN area if it was quiet (somewhere prearranged and approved with the school). I didn't go to assemblies. It was fine if I missed registration. I was allowed to find my head of year at any time to seek permission to leave early etc.

I had (still have) CFS. My parents took the view that education could be caught up at any time coping and Pacing was more important.

[Hedgehog80]

Thankyou for CFS recommendations I will look into the lights and treatments mentioned.

We have medical letters, the problem is we are still awaiting follow ups so till we get them little is going to change. First appts are April unless they get cancellations

[EmeraldScorn]

Stick with what you're doing, you're the parent(s) and you know best that her health comes first.

[ChicRock]

It's not the sleep that really makes the difference it's the pacing of the morning.

But then I don't understand why you can't just get her up earlier then? It's still a slow paced morning, surely it's all just happening 15 minutes earlier, allowing her to get to school in time?

[gamerchick]

Posters who say just get up earlier probably need to spend a day in your shoes

Bloody right, I think the OP is amazing me with everything she deals with.

[ymmv]

ChicRock You don't need to understand. First part of PageStillNotFound404's post might help tho.

[Gileswithachainsaw]

Yy definitely carry on. Their stats aren't your problem your responsibility lies with your dd. She has enough to deal with without having to worry about school and attendance numbers.

Either they want people in or they don't. If they do then sometimes exceptions are going to have to be made. Like leaving or arriving earlier/later or not wearing part of the uniform because its not possible etc

[Hedgehog80]

Dd1 is fatigued and in pain no matter how much sleep she does or doesn't get that is true, pacing seems to help. But I still am of the opinion that i would rather not start waking her earlier when this system seems to work. I feel like, and this may be the wrong attitude but why should we keep experimenting when we've already found something g that works and her health is so fragile already.
I feel like the school should just accept it as a reasonable adjustment and then once the appts and treatments start we can reassess then

[pinkish]

I'm really never going to complain about my mornings again. You sound awesome, and so reasonable - actually find it sad that the school are being so inflexible. I hope you find a solution - mainly a way of getting them to stop being so stupid!

[Justwantcookies]

Can you learn to drive? That way she gets her slow paced mornings without rushing for the bus and you could take her to school on time. Not an immediate solution but is it worth considering for a few months down the line. Maybe putting that to the school will allow her to start late until you can do this.

[Pooka]

Would it help if you were able to drive as well? That way your dd could be dropped off by your dh on the way to work and you could drop the others off in time for their school.