To feel sad that it’s always my daughter ( but aware she is not the only child in the school )

[Alwaystheway2012]

My daughter is in year 6 and I’m just gutted for her again.
swimming apart of the school curriculum but they choose specific years to do it each year due to funding. Last year was only the year 6 class. Daughter did school swimming in year 4 and not last year. Due to the curriculum stating that by the end of year 6 they should be able to swim 25 meters the school are again focusing on year 6 this year and those who can not yet swim 25 meters.
my daughter I medically complex and requires a iv central line ( Hickman line )
which goes in to the main vein of the heart/ blood stream.
we got the all clear to do swim lessons in year 4 and on holidays etc with a protocol of

swimming - shower - dressing change of Hickman line and changed to the end connector with in 30 minutes of leaving the pool. This was all good swimming was at the end of the day and I met them there showered her and did her dressing.

Dressings should ideally only be done once a week so swimming day became her dressing day.

however for short periods like for example a holidays more than once a week is allowed just her for extended period of time.
The school are aware of this as at the time I had to get medical clearance
so anyway with really short notice the school have announced year 6 will do swimming differently and instead of going to the swimming pools once a week. They have hired a swimming pool for the playground for a few weeks and instead of doing week sessions through term they will do daily lessons for these weeks. The pool is chlorine treated so as protocol she would need to shower.
there is no showers at school. They are getting changed in tents in the playground, then will have showers at home after school. Her dressing would need to be changed after but then again after I showered her at home so 2 x a day dressing changes which really isn’t feasible.

the only way I can think is that he does every other day and the last lesson of the day so I can collect run her to shower and change dressing at home making it just once and every other day ( which is fine ) but I can’t dictate the timetable as again she is just one child so the timetable can’t be based around her.

so I’m guessing yet again I will have to tell her that she don’t go in the swimming pool with her class 🥹🥹

no point in this post apart from a rant because it’s always something 🙈

Have you spoken to the school yet? I would fully expect in this situation that the y6 were timetabled at the end of each school day to enable your daughter to participate. Is there any reason you think they won't?!

I work in a school and suggest putting this in writing to the Y6 teacher, SENDco and HT. You are even providing a potential compromise/solution. I would be amazed if they don’t agree to it.
if you don’t mention it, it is unlikely they will think of it and your daughter will miss out.

Sorry OP. This must be hard. I have nothing to say that can offer anything practical to help, but I do empathise and I am sorry for you and your child's disappointment.

Definitely something they should try to accommodate - you've come up with him a workable compromise. She is just one child but most children won't have complex needs that means swimming is feasible in one part of the day and not another. All the best to you in advocating for her.

I agree. It seems like a simple fix.

More and more schools are tackling swimming lessons like this now. Putting up a pool on the premises.

Is it possible for the school to hire a shower for the weeks that they will have a pool. Is it possible that your DD can learn to change her Hickman line herself?

I have emailed, but I know it would unreasonable to force it ( not blaming the school in anyway )

Not allowed to learn, most parents are not allowed to change the dressings etc usually it’s community nurses that do for example oncology Hickman lines.

Have you seen Cath Dry dressings? It's expensive (£82 for 12 ex. vat) but it would get around your issue for the week.

https://www.patientchoicedirect.com/shop/cdss001-xl-cath-dry-xl-hd-pack-of-12-dressings-9326?srsltid=AfmBOopS15HMAbS_GbauPpsGqLBoNBG7OlIJ10RmZ_IJZF84nTMfmZJt#attr=

I'm absolutely fascinated by this! I teach and generally have quite a good ear to the ground as to what's going on but this is completely new to me. Is it not hideously expensive? How big are the pools generally? Are the lessons just taught by the school staff?

Your poor DD. It sounds like a bit of a nightmare all around.

Week blocks are a much more effective way of teaching children to swim. It didn't work well for my DS either and the school got annoyed when he got ill and was well enough for school, but not for swimming.

I don't know if they would be possible to use for your daughter but have you looked at Cathdry or the independence products shower protection pouch? The independence one was designed for hemodialysis patients but I know that lots of people with hickman lines have used them successfully for swimming.

I hope you can get something sorted.

My child has SEN, albeit not medically complex ones. I know it’s uncomfortable being “that parent” that’s always asking for things, but actually it is really reasonable to expect school to make reasonable adjustments for your child to enable them to fully participate in the curriculum, including swimming. Asking for her to have the last lesson of the day is absolutely something I’d expect school to accommodate and timetable around her unless there’s a good reason why not.

I'd gently suggest you can be a bit more assertive with this OP. It's not an unreasonable thing to ask. You can be firm that they work with you to find a solution, whether it's the one you suggest or another like PP suggested, they hire a shower.

I’d definitely be a bit more assertive. They (presumably) know her medical needs, but are choosing to ignore them? Even if she only went swimming on the last session or something - there must be a way if including her for part if not all?

Paediatric nurse here. I'm amazed the hospital are allowing swimming with a line in. Showers and shallow baths are fine but I've never heard of anyone going swimming with one!

And isn’t it just really cold?

There was an old pool in my primary school which had been filled in (in the 80s) because it was so cold nobody wanted to use it.

It depends on the patients, so a lot of patients can’t access their own lines or change the dressings. We wasn’t allowed to swim for 6 years but they changed the protocol for a certain bunch of children with specific illness because they have them for life and we as parents are trained to access the lines every day and do the dressings so then they changed the protocol for quality of life. As long as we change the dressings. Oncology patients etc who have the likes for specific treatment still are not allowed.

I'm assuming the pool is something like this initiative - https://www.bbc.co.uk/news/articles/c1w3zl16e2go

Hopefully they can arrange her classes swim session at the end of the day OP. It might depend on the availability of the swim coaches though and when they are at school to run the sessions.

School lessons are generally pretty useless in tsrms of being able to swim the distance properly as it takes about a year of weekly lessons with kids on the same stage..

My dc did crash courses over school holidays to improve more quickly

Get a camping shower…take it along and get her rinsed off with that maybe? You could fill it with warm water and take it to school for her if they can do the last lesson. You can buy a pop up shower tent too …

The school can, and should, arrange the timetable to include your daughter. I hope they do x

Can you take a look at Face Everything and Rise- FEAR?

They are a charity focussing on providing dry suits to children with complex needs and central lines. I think they are only small but it sounds like exactly what they are trying to do- provide access to children to more activities with their peer group rather than being excluded because their medical needs are too complex.

My son has a hickman like OP's daughter due to needing TPN and was able to go to the hydrotherapy pool to do physio once a week. Like OP, it just became line dressing day.

He's unable to at the moment because he's on treatment but latest scan says he is cancer free so after his last round, when he's off treatment and just needs his line for TPN, he will be able to go back to the pool again.

Yeh I mean I don’t mind the line dressing being more often. But trying to work out about the not showering before line change but still having chlorine ?

so like I would need to shower her when she gets home ? But then change the dressing again ?
or shower her and not change the dressing 🙈