I'm new to this - what do I need to know?

[Somuchgoo]

My 3 yo was diagnosed with a low grade brain tumour a few months ago. As it's low grade it probably won't kill her, but they didn't get it all, and it's pretty likely to grow back, she'll need further surgeries, possibly end up on pretty long term chemotherapy etc. There is a chance that the remaining tumour will stay stable and no further 'treatment' will be required. Who knows.

Since her surgery, she's had issues with her balance, ataxia etc - she can walk but tires very easily, so I wouldn't even go to the end of my road without taking a pushchair. She falls frequently (20 times a day maybe) and would fall much much more of I didn't hold her hand as much.

Fatigue is a big issue - we have to pace her activities or she gets totally wiped out. She needs a decent nap in the day and can't manage a busy morning and a busy afternoon, have to build in rest days etc

She has compete meltdowns where she is inconsolable and all we can do is move dangers away from her, sit with her and wait. The longest was 5hrs long. Usually they are much shorter, but it varies.

She's due to start school in a year (though can defer if she needs surgery), and I'm starting to wonder about school support etc and where I start.

I'm hoping that by a years time she will have enough energy to get through a school day, but 5 days in a row seems like quite a stretch at this point.

Does she just start school and then we work out what support she needs, or do we do this in advance? I have no idea at present what steel be able to manage in a years time.

Having a very brief look online, everything seems geared towards either things like Autism, where there may be no physical impairments as well, or where its a physically disability alone.

Sorry I'm just a bit lost. Where do I start?

Thanks

As a parent with a 10yr old with growth delay ,dyslexia, asd, dcd ,add and sensory issues but Sheldon Cooper intelligent my advice when working through the sen system is keep every email and a copy of all reports. If you don't get a letter post appointment with Dr at hospital request it via secretary. Every document is evidence in your fight for your child. You have already had the health battle and now you face the education system. Keep copies of every email you send to to school and request copies of all minutes from any meeting you have with the school. I started with a folder nicknamed ' The book of Moo' ( moobear is my son s nickname). It soon became the trolley of Moo and now we have a whole 20gb one drive file of all documents in folders by school, hospital, diagnostic reports etc. The more organised you are for the fight the more prepared you are.
Get to know the senco at the school and try to keep on friendly terms with headteacher and senco. Ask for copies of everything!!! Ask to check anything that they send to local authority and for copies of all emails regarding your child.

Good luck with your journey. It will hopefully be straightforward given the health issues and I wish you well. My suggestion is to get to know the school team and get them liaising with your support ' health team' before your child starts school so that you have a smooth transition. I would expect your childs nursery to start the ehcp process there and link with the school. Your daughter should by the sounds of it have an EHCP to support them as they go through their early education. I would expect the chosen school to Flag required support early due to your medical evidence . I don't want to be negative but at times the sen system is hard due to it being broken . I wish you well and hope that your chosen school supports you. I hope your daughter continues to make a good recovery ,best wishes to your family

You can apply for an EHCNA now. This can provide support in school and therapies such as OT and physio. If DD can’t attend school full time it can give access to alternative packages of support as well. IPSEA have a model letter you can use. They, and SOSSEN, have lots of information on their websites, too.

An EHCP won’t be in place before the deadline for school applications so even if you make an EHCNA request now you should also apply for a place via the normal admissions process. As part of the normal admissions procedure some schools have a social and medical need admission category, it’s worth looking into this if only one particular school can meet DD’s needs e.g. only one os accessible/on one level/flat playground etc. Speak to the SENCOs of the local schools.

DD will also be entitled to school transport due to her disability.

Some areas have additionally resourced provisions for those with a physical disability. And, many areas have a specialist physical disability support service/specialist teaching team who can advise schools.

Is DD attending nursery?