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

(98 Posts)
Hedgehog80 Tue 07-Mar-17 13:36:05

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

Hedgehog80 Tue 07-Mar-17 13:36:54

*sorry - got the coach at 750am

PurplePen Tue 07-Mar-17 13:38:04


Get her to bed earlier, get her up earlier, she can still have the relaxed morning and get to school on time.

Annesmyth123 Tue 07-Mar-17 13:38:42

What's the official,school start time ?

Hedgehog80 Tue 07-Mar-17 13:39:37

It's not that easy. Her sleep is affected by her conditions and is not restful sleep. She goes to bed as early as she can already and still it makes no difference, I think the most troublesome conditions are the CFS and Pots. No amount of sleep seems to make a difference

Hedgehog80 Tue 07-Mar-17 13:40:18

Registration from 830am
First lesson 905am so she often is there in time for first lesson or sometimes a little late of traffic bad

PurplePen Tue 07-Mar-17 13:40:35

If no amount of sleep makes a difference then get her up earlier anyway.

Annesmyth123 Tue 07-Mar-17 13:41:16

If the sleep makes no difference, then get her up early and get her to school on time.

DoingThisRight Tue 07-Mar-17 13:41:28

Sounds really exhausting for your poor dd. Is the problem the 1hour wait time for the coach? If so, could you leave earlier so she's still on time? What time does school start?

Hedgehog80 Tue 07-Mar-17 13:41:30

But she then faints more if I push her and we are trying to avoid that but having a slower paced morning. With pots even standing up too quick or doing too much causing fainting

harderandharder2breathe Tue 07-Mar-17 13:41:37

purple I highly doubt the issue for this child, who has multiple health issues is as simple as "go to bed earlier". I'm sure OP has thought of such a simple idea by herself.

OP if it's overall improving her time spent at school then do what you have to do

PovertyJetset Tue 07-Mar-17 13:41:40

What does the inclusion officer or senco say? Does she have an EHCP?

I think what you're doing is sensible. Schools can be rigid and annoying. Hope they can see sense.

wildpoppiesanddaisies Tue 07-Mar-17 13:41:52

As long as she's there in time for first lesson I don't think it's unreasonable.

Annesmyth123 Tue 07-Mar-17 13:42:16

But if you get her up early you can do the slower pace, just earlier ?

Hedgehog80 Tue 07-Mar-17 13:43:19

Sorry it was coach at 750 I typed 850 by mistake.
The problem is multiple conditions so we can't just get her up and say "oh you have CFS so will be tired anyway" as that then causes issues with Pots and fainting or if she does too much pain from EDS etc etc

I just felt that wjatbwe are doing Seema the best option and should be considered a 'reasonable adjustment'?

EatTheChocolateTeapot Tue 07-Mar-17 13:45:25

Your poor DD, could she home school or go part time?
I loved school but no point going if you are suffering. Who can learn when they are feeling unwell? It's bloody ridiculous.

ihatethecold Tue 07-Mar-17 13:45:42

Yanbu. I think you are being very sensible.
Posters who say just get up earlier probably need to spend a day in your shoes.

Keep going op. It sounds tough.

Hedgehog80 Tue 07-Mar-17 13:46:32

We are trying to keep her in school as feel socially it's better as we feel if she's just at home she will become very isolated
Academically she's doing really well so that's not a concern. It's just the morning issue

Hedgehog80 Tue 07-Mar-17 13:48:08

Before Xmas she was virtually part time. This new morning routine does seem to have made an improvement as some days she's remained in school, with additional rest breaks but had still been in more than previously

DoingThisRight Tue 07-Mar-17 13:49:56

For the sake of a few minutes I don't see why they are being difficult. If it is in her best interests and helps her cope for the rest of the day, then they shoes be supportive. Poor you op, I see you have other D.C. With health issues flowers

cjt110 Tue 07-Mar-17 13:50:41

I can only imagine how tricky it is for you all. It seems the latter set up is helping - but one thing struck me. School starts at 830. She gets in 40 minutes late. How would an employer look at that when she's older? I'm all for making it easier for her but think perhaps it is setting her up for a fall later in life. Not everyone is so accommodating - I cant see an employer looking kindly on this.

I'm on the fence on this one.

Gileswithachainsaw Tue 07-Mar-17 13:50:47

Yanbu. If that's the way it works better and enables your dd to attend a full day at school then so be it.

She won't be the only child who is on a reduced or altered timetable surely?

I think missing 5 mins of lesson better than losing an afternoon

StrayHairOnMyScreen Tue 07-Mar-17 13:51:18

If your DD has such complex health issues, why is the school being so inflexible about a mere 10 minutes later start to the day? It sounds like they are BU.

Hedgehog80 Tue 07-Mar-17 13:52:29

This isn't what we cannot understand . At worst when she gets there at 910am she misses 5 minutes.
Some days if she is really unwell she still does a half day or is off but generally things have been better. I can see that the school cinsoder registration/assembly etc important but for dd1 we would rather sacrifice that for her actually being in lessons and not completely exhausted when she arrives

Hedgehog80 Tue 07-Mar-17 13:53:50

cjt 110 I completely get your point. We are hoping that once all her follow up appts come through and new treatment starts that things will improve and we can re assess. For now this is working better than the previous system

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