Still has no stamina for full time school, when do I need to worry?

[ExhaustedChild]

DC is 8, Y4.

Has SN and an EHCP.

Has never done a full week at school, they just get so tired. It’s now in their EHCP that they can leave early.

It tends to be Wednesday onwards that they get so tired. But they’re more likely to be sent home on Thursday than any other day – but they often come out looking exhausted on Wednesday as well.

School have tried letting them miss PE but that made no difference. Shorter weeks make no difference to tiredness levels, and we cut extracurricular activities and that also made no difference. They’ve even tried to make sure trips for the class are on Mondays and Tuesdays because if they’re later in the week theres absolutely no way DC would be able to go.

It’s ruining the weekend as DC is just to tired to do anything until Sunday afternoons. We hardly get invited to parties anymore because I’ve turned down so many Saturday invites knowing DC will be to tired to go.

Pushing through the tiredness and forcing parties/activities/whatever over the weekends is meaning that DC is more likely to miss Monday at school due to tiredness, so that’s not an option.

I am very worried that DC will never have the stamina for a full week at school. School have said they’ve never known it still be like this in Y4 with an SN child, but it’s very common until Y2ish with DCs specific SN so they’re not overly worried and think it’ll change before DC hits secondary age. They also think it’s nothing to do with anything I or they’re doing wrong and it’s purely due to DC having to work that much harder than their peers to get through the week.

GP has given a check of them in June last year and said they’re very healthy, and couldn’t find a medical cause for the exhaustion, they did blood tests and everything was normal range.

They wanted me to reintroduce activities on Sunday afternoon or Monday and/or Tuesday but I’m worried that’ll make it worse even though when DC did activities their tiredness levels neither improved nor detoriated which school say suggests they can cope with it.

Do I need to be worried do you think? And WWYD about the activities?

It might be helpful to know dc's specific diagnosis if you're happy to share, as advice would varÿ hugley dependent on their specific needs

@JJJSchmidt Dyspraxia (both Motor and Verbal types), Dyslexia, and Language Processing Disorder

I voted YANBU as my DC is and always has been exactly the same. They're now nearly a teenager and still no answers or solutions. Our GP has been rubbish, their blood tests came back fine so the GP contacted paediatrics for advice. That was last summer and still we've heard nothing and the GP won't do anything else. Sorry I can't be of any help but I'll be following closely for any advice

Would it not be better to request change of placement to a Special/ist where the week will be better paced than to accept missing part of every week?

My nrly 12 yr old asd, adhd, dyspraxia is the same. She has never put in a full week in at school. She sleeps all weekend. She won't go for a blood test though as she has also has a fear of blood. She suffers anxiety too and ocds.
She is in top set and I honestly have no idea how she gets through a school day, she's always exhausted.
I think she just masks so well at school

@2reefsin30knots Unfortunately the council will not fund Specialist because DCs EHCP doesn't state 1-1 needed so its cheaper to send them to mainstream on the EHCP.

Would the school support a 4 day week, with Wednesday off?

I don’t know how relevant this is as different diagnosis etc.

DD has mild cerebral palsy and was often missing the odd day until y2/3, as you describe. Then in y3/4 she was pretty much full time at school but unable to do much in the way of activities outside school, weekends needed to be resting time especially Saturdays.

However year 5 has been very different and she has had a lot more energy. (Also a lot better behaviour wise as it happens). In case that gives you some hope.

You might find this useful.
https://me-pedia.org/wiki/Spoon_theory
Spoon theory.
I have an adult child with a disability and they have found it useful way to describe and manage their energy.
They have found strategies to manage through education and into the world of work. They have needed reasonable adjustments at each stage but have made their way into a successful adult life.

@minipie Thank you it does actually, it's what school are saying, that by secondary school age (so 11) DC will be doing a full week in school. The Senco/Headteacher has said she'd put money on it happening.

I think in your shoes OP, I would request an Early Review and state that you want to school to make reasonable adjustments to facilitate a full time education. This will mean an altered timetable for your DC where they receive enough down-time and therapy time built in during the day to not become exhausted and require days off.

This will probably mean that they do need 1:1.

@NellietheNumpty That makes perfect sense thank you will use this with DC but possibly alter it slightly

I second this.

And following a review of the EHCP if you want SS and the LA don’t name one you can appeal. Alternatively you could look at part school provision and part provision otherwise than at school.

I have a 14 year old DD with a processing disorder, although it has taken many, many years of pushing for us to get a diagnosis! She has always found school exhausting, and was in bed by 5:30/6pm and slept for 13 hours each night through most of Primary school. When she started High school, she would come home, have a shower and go straight to bed for a couple of hours, get up, have dinner and do some homework then back to bed for another 10 hours or so. It's really only been in the last year or so (Year 9), where she seems to be coping better with the exhaustion, although she still needs around 11 hours a night. I think the processing disorder means they just need to work and focus that much harder, that it leaves them completely wiped out. It definitely got better as she's got older, but in your shoes I would just listen to what he's telling you he can cope with (and I'm sure you're able to tell, anyway).

Did you ask the GP for the actual test figures? If you didn't, it might be worth asking. Our GP is funny vitamin testing, like they don't really believe in deficiency. I had it twice and both times I had to insist on a test to check. My daughter had dizziness and extreme fatigue and had bloods done GP said everything was in the normal range. I asked the exact figures and she was 1 digit from the bottom of the scale of the normal range for iron. The GP refused to accept it could potentially be the cause. I started her on a children's vitamin with iron in and her dizziness and fatigue have now gone away.