How to get a letter of support of undiagnosed child health problem

[AGenie]

Hi,

My son had obstructive apnoea for years as a baby and toddler, and also food intolerance. He is now much better and is getting stronger all the time, but he still gets viruses a lot.

The school Headmistress has figured out that he gets ill when he is tired and started giving him pre-emptive afternoons off last term so that he could get his energy back before getting ill. It worked a treat and he was well for the whole term and only missed about 6 afternoons.

However this year she cannot continue the scheme unless I get a letter from a Doctor confirming that he has a specific medical condition that is causing the tiredness. We have been to see a Pediatician and she said that while the afternoons off were exactly the right answer, there was not a specific diagnosis that she could give and so my only chance was to advocate really hard for him.

The Headmistress says I should keep trying to get a letter from some from him as the afternoons off were clearly the right answer, but I don't know what to do or where to go to get such a letter.

I wondered if any one might have an idea? I don't know whether a private GP or someone like that would help. It's pretty clear that ds (6) is exhausted and run down from the obstructive apnoea (I know I am) but how do I get that in a letter?

As an aside, my son tells me that he is tired because the school teaches him too much, too fast, and we asked the school if he could be put down a group so he could have easier work. The school says that as far as they can see he can do the work and they won't put him down a group as it will show on their statistics and they will be punished.

Ds also has intermittent glue ear and we are not having surgery for him as it comes and goes.

I despair of the system that has brought this all about but I wondered if anyone might know what to do?

Thanks!

I might ask on the primary education forum too as they might know about the "in his best interests" part of the letter that needs written. Thanks!

Is it possible to meet with the SENCO and ask for a care plan to be put in place? They are much better placed than the head to understand adjustments and support and would be able to talk to you about what signs might indicate he's not well, when to call you, when to get him to rest/avoid playtime etc

noeuf, I think you might be right, but I'm not completely sure TBH. The name SWAN seems to suggest that it's not restricted to patients with learning disability though? I just thought they might have some useful advice.

I was thinking learning difficulties as a catch all. More MLD and SLD if talking school terminology.

noeuf that's right, he just gets run down and needs a couple of afternoons off to regroup. It's not a huge ask, it's just the admin is complicated.

The senco and head both understand him completely and the head has an almost uncanny ability to spot when he's going down. She notices before I do sometimes. Both people absolutely fantastic at their jobs, very caring and sincerely interested in helping ds. They are just stuck on this admin nuance.

I think the home-ed option would work for him as he just needs quiet and I could easily give him a bit of play-based learning. Tbh, the thing that works best is to let him sit in a cardboard box and talk to himself about not much at all for the afternoon while I do a bit of gardening. It seems to reset the system.

It is the headteacher that you need to speak to since they are responsible for attendance. I'd suggest taking the gov policy in and talking through the best interests/letter part to find out if that's what they are looking for. HT can then deal with governors and EWO.
We did this and also talked through flexi school approach. We concluded that flexi approach isn't really right in this sort of situation since time at home is for rest not home ed. Anyway, still worth you reading up (and sorry for out of date links).
I'm in loads of groups including SWAN but found it tricky to get advice on this topic - that's why I am sharing. Good luck!

I think the best interests bit is a red herring here. I think it's really there to say all kids should receive a FT education unless it's harmful - to put the onus on schools and the LA to step up and provide support.

Thanks, that's good to know. :-)

The Govt guidance has been amended to remove (most) references to flexischooling but this is in no way the same thing as flexi-schooling having been banned.

If you can get the school to agree to flexischooling, then you're home and dry.

Yes, children must have a full-time education, but on his afternoon off you'll be supplementing his school education, no ;)? On that afternoon, he will be doing reading practice, maths, etc -sleeping-- or, alternatively you could make up the 'missed' hours at your leisure, e.g., learning for one hour on the weekend. Problem solved.

There's always the option of homeschooling too. No obligation at all to send your child to school, and he could go full- or part-time later.

Sympathies about allergies; DS has some too and it makes him very cranky.

I do wonder whether a sleep study checking for desats would be useful though. I think there are other options for dealing with OSA than CPAP/ mask, e.g., medicines like monteleukast etc?

I'd be tempted to make another appointment with the paed, write a letter in advance for him/her to sign and then at the appointment be very persistent (I'd just sit there until it's signed).

We do something like this with ds2, he has ASD and gets increasingly stressed throughout the term. If we keep him off for a day or two sometime in the middle, he can then cope better, if we don't, he starts to school refuse and becomes more and more distressed.
School won't agree to a formal arrangement, but we keep him off and let his GP (who understands and is very supportive) know so she can update his notes and write a letter to school if necessary.

Would something like that help? An informal arrangement with your GP?

Thanks, these are all great ideas. I'll look into it. I've also written and asked for a private appointment with a sleep apnoea specialist.

If OSA is the main diagnosable thing so far, would it be more helpful to speak to his ENT consultant, as it's more their territory than the paediatrician's?

I think I'm going to try an opstructive apnoea person. The specialist who saw him was just an ENT surgeon as the problem was very obvious.