Epilepsy, Non-Verbal, Nappies, Developmental Delay - How else can I prepare my 4y/o for starting Reception.

[Ryderr]

Hello All :).
I'm trying my best to have this all make sense, but there's just so much information to spew out.

To cut a heartbreaking and long story short, (believe me this is the short version).
Im looking for other ideas for how to prepare my (currently 3, but will be) 4 year old, for starting Reception in Sept 2022.

She has Epilepsy (seizures started day after 1st birthday.)
They come in clusters (status epilepticus), and she has been intubated and sedated more times then I want to count - due to severity of seizures and her body not responding to rescue meds.
When these episodes occur, and when she does wake from her induced state, she is like a 6month old again, this can last for anything up to months after.
She can't sit, stand or hold her head up. can't hold cutlery. Or her drinking bottle. Has vague looks on her face at everything. Doesn't talk, or make noises. Has no interest in other children.
She doesn't have an interest in anything (learning shapes, colours, numbers, animals) and spends most of her time sitting in the corner of the room or behind the sofa.. Just sitting there. No toys or anything.. I've have tried to be consistent with helping her learn new things, and get somewhere with her development. But she just moves away, or shows no interest.
She never makes eye contact, and when she does its like shes looking right through me...

Have you applied for an EHCNA for her? From what you’ve outlined, I’m wondering if mainstream education is what your daughter needs? Have you spoken to the school (that you have applied to) SENCo?

Not to sound out of the loop, but what is an EHCNA? 😬

I'm hoping this f2f with the school admissions team will give me more insight as to what type of school, or what type of next-steps care will best suit my daughters needs.

When is her birthday? Just wondering as if she’s summer born, it’s possible delaying her school start may benefit her?

An EHCNA is an Education, Health and Care Needs assessment, the assessment phase prior to getting an EHCP or not. IPSEA is a charity that supports parents with SEND matter and they have a model letter you can use on their website.

Although some LAs have assessment places at special schools for Early Years, you more than likely need an EHCP in order to get a special school place, especially longer term.

I would start being pro active now. Involve the nursery. You want head of education and head of special needs with the council. You need a statement and that can can take a year! If she has a second parent involve them. You need to ring the council personally and keep ringing until you get answers. The short version is my child is due to start school but she has additional needs and I would like to request ECHP assessment before start as she will not be able to access mainstream education without support.

MrsPear unless OP is in NI she doesn’t want, and won’t get, a statement of SEN. And, unless she has to appeal it doesn’t take a year either.

You also need to ask yourselves questions - what education do you want? What support does she need? Start researching schools and see how they can help - there is only one in my borough that I can think of that would be suitable: the children are given transport. My child has hearing loss and he is at the only school with adaptions. You get use to lack of choice as they are best support and more likely to get an education:

@Imitatingdory I’m confused - why not?

My sons ECHP took a full school year - no appeals and me pushing. But that is a London borough so they are busy.

I have a child with complex and v destructive epilepsy so I get what you're saying about the catastrophic effect of seizures. .My son only has the development if a v young child and uses a wheelchair etc so more severe but to be honest from what you are saying your little one may be better off in a special school. They will have a wealth of knowledge of seizures and will be trained to give rescue meds etc and they are fantastic at presenting learning in a way that is sensory based and most likely to be absorbed by your child. You may find it hard to find a mainstream school that will accept her as not many can provide the level of support it sounds like she needs.

If your NI I doubt I can really offer much help. But if you was looking for schools in England the SEN schools are grouped by primary need. So Lan, coin, high coin, sld etc etc.

Paeds would point you to the primary needs and you would look at those types of schools. If its mainstream your after then an outstanding school might not be your best bet. Some schools with units attached might be better even if dont want to unit part.

Sorry I dont think that's much help teally

MrsPear statements of SEN no longer exist in England, everyone should now have an EHCP. In Wales statements are being transitioned to IDPs and I do think you can apply for a new statement of SEN now.

EHCPs are governed by statutory timescales. If the LA fails to stick to them you can begin Judicial Review proceedings, usually the mere threat of JR makes them pull their finger out. Being busy is not an acceptable excuse to breach the statutory timescales.

Sorry I have lost the plot with the NI comment 🤔

Ehcps I'm afraid to say can take months or years even if you dont appeal ( I have a child with SLD so bloody glaring needs it still took 10 months without a wiff of a fight)

I have also appealed many times for my other children. I'm a governor at a SEN school and have three children with a ehcp

flapjack as it sounds like OP’s DD does not have an EHCP mainstream schools can not refuse to admit her on the basis of her SEN.

Whitejellycat if the 10 months did not include an appeal the LA were in breach of the statutory timescales and you could have threaten JR. From EHCNA request to finalising the EHCP should take a maximum of 20 weeks.

When you’ve won your battle and got your dd a place at her school, don’t assume that all the information you have provided will automatically filter down to the people who will actually be looking after your dd. On her transition visits, ask for some extra time with the staff that will be in your dds classroom and tell them what they need to know yourself, so that you (and they!) can be reassured that they know everything they need to.

OP it wouldn't matter if your child was summer born or not, with this level of additional need you would be able to defer. Tell admissions everything you have told us. Take along what evidence you have. Ask them the procedure for deferment. They will keep you right.

Ask for help from your lea, she has complex needs so will need constant 1:1. Initially they may place her in mainstream whilst she is assessed but I suspect she will need a special school with a medical team on site plus support staff to maximise her development. Dp's dd has a different form of epilepsy and sen, she's an adult now in supported living but he tells me his exw had to advocate for their dd a lot, fought for specific epilepsy college as a teenager but prior was at a day school. Keep copies of everything, ask for help and get your gp and practice manager on side plus her specialist ms

@Imitatingdory
oh ok didnt know that. thanks

@DistrictCommissioner. February born.

@MrsPear, @Imitatingdory.
She has a care plan at her current nursery, they needed that in order for all staff to be trained on administration of her rescue medication. She's also had one done through her epilepsy team in 2020 (due for an updated one in May 2022).

I've been quite pro active since September, researching schools in the area, what they have to offer etc, as well as looking further afield (few counties over, I don't drive either, so that was a factor in my decision).

Currently, I'd be happy for her to just recognise shapes, colours etc. To be out of nappies. To be able to have some sort of independence for herself. Stuff like;, actively choosing toys for herself and playing with them. To be able to say some words. And eventually, to be able to ask questions about the world around her..
(fully aware there are plenty of people who have functioned fine and Iive perfectly 'normal' lives without ever talking.)
(I'm still praying for a day when she says mum/mummy, but realistically, I haven't had my hopes up for a few years if I'm honest).

An EHCP is different to an individual healthcare plan. It sounds like DD has the latter, but will also need the former so you should apply for an EHCNA.

You will be eligible for school transport. Without an EHCP it will be to the nearest suitable school, with an EHCP if it is named in section I the LA should provide transport.

In England, everyone can defer until the term after their child’s 5th birthday but only summer borns can defer in the sense of starting reception in the September after their 5th birthday. (Caveat being if being out of chronological is in the EHCP.)

The deadline for applying for this September is imminent. With an EHCP you choose the school, but the process can take a year so start now and delay her admission by a year, or home school for a year.

Why mainstream though, that doesn't sound at all suitable? A special school (transport would be provided) sounds much more appropriate . Nothing to stop you moving to mainstream in the future if she improves.

@Imitatingdory

Whitejellycat if the 10 months did not include an appeal the LA were in breach of the statutory timescales and you could have threaten JR. From EHCNA request to finalising the EHCP should take a maximum of 20 weeks.

Yes I know, I'm just doing my second judicial review as we speak unfortunately. This was a ehcp requested by a sen nursery so all of the pupils was over the 20 week deadline. It was all done for reception and I got compensation from the LGO.

@Ryderr you really need to get the ehcp process started. Are you in England? In my county SEN nursery would have started the process in October before reception.

If the nursery hasnt you can apply yourself and you can find the model letter on the ipsea website. You need to do that asap and get clued up on EHCPs as fast as you can.

My son who has severe needs had his ehcp input via Portage, paediatrician, speech therapy so I didnt need to apply myself.

It sounds like your dd has complex needs. Has no one been talking to you about school or EHCPs?

Our son was referred by his Epilepsy Nurse to Portage because of the expectation of learning difficulties (which he does have). Portage organised our son's placement at a specialist nursery. And the nursery organised his EHCP ahead of primary school applications.

It sounds as though you've had NONE of that continuous support, and I feel really sorry for you having to find your way through this unsupported. Please take a look at the IPSEA and the SOS SEN websites for information about how to request a EHC Needs Assessment, your child will definitely quality for an EHCP and that is your route into appropriate education for her.

Oh, and don't worry about toileting. Her personal care needs will form part of the EHCP. Our son is at a specialist school and, age 12, he's still in pads.