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...

@titchy 1st deadline for applications was 14th Jan. Anything after that was classed as a 'late application' and they get processed at a later date, I believe.

For getting into a SEN school I needed a vast list of assessment/reports that my daughter hadn't had yet, they wouldn't even entertain the idea of talking to me without these in place. This is why I've chosen a mainstream school that has 'outstanding' SEN reviews from ofstead, and are also highly rated in my towns 'parents of SEN children forum'.

@WhiteJellycat England, yes.

Noone has given advice or even helped (except the epilepsy nurse, he's been a godsend the last few years!!). I've had to do all the leg work, research and phone calls myself. Health Visitors are a bit shit too. Wanting to know why I wanted an Early Help Assessment, and why wasn't it brought to their attention earlier that my daughter might need additional help and support . (DEFINITELY WAS 🙄 I record phonecalls, and have atleast 4 photocopies in different folders of every letter/document I get sent about my daughter).

@Imitatingdory

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.

I am fairly sure that some schools can refuse to admit pupils on the basis of SEN. For example, the primary school mine went too could not take children in wheelchairs because of the set up of the corridors. The bigger school round the corner could though, so I suspect they could justify not spending the money on alterations because these children could be accommodated round the corner.

@Imitatingdory Ah I see. My borough is known to be unhelpful at best so I didn’t want push too hard in case they lost him and denied they had ever spoken to me.

Back to op really good luck and hope those with children with similar special needs can help. Speaking as a parent who has a child with a disability I know how hard it is particularly the acceptance of a place in a unit but, and can only speak for mine, it has been a turning point for him.

For getting into a SEN school I needed a vast list of assessment/reports that my daughter hadn't had yet, they wouldn't even entertain the idea of talking to me without these in place. This is why I've chosen a mainstream school that has 'outstanding' SEN reviews from ofstead, and are also highly rated in my towns 'parents of SEN children forum'

That's why the process should have been started a year ago... It is entirely possible that the schools you have chosen say her needs are too great. Others are giving you great advice about the process, but I can't see her being successfully integrated into mainstream this autumn

There’s SEN and then there’s SEN. I really think you need to forget about mainstream school and focus on a special school. I’m just not really sure what a primary school teacher is going to do with a child who is so far behind her peers developmentally? She’s surely going to need 121 support all day and I can’t see how she’s going to play with her classmates?

Hi OP

I’m so sorry you haven’t had more support.

As others have said I’d advise ringing IPSEA as soon as possible to get some advice:

www.ipsea.org.uk/.

You can do this even whilst still meeting the admissions for the school you have chosen. From what you have said it does seem that many mainstreams schools may struggle to meet your DDs needs and you would definitely need an EHCP to get the funding to support her.

It’s very hard when you start trying to work out getting support for a SEN child, but IPSEA is a good place to start.

@titchy

I did try beginning of 2021 to get the ball rolling, but was told by many people that 'because of covid' I wouldn't hear anything for a year or more because there will definitely be a back log.

I just hate how that's the excuse for everything these days. I obviously appreciate things were ground to a halt, but ffs life still has to go on.

This route of education is definitely not what I would have gone for, but if its one of the only options available right now, I think I'd rather take my chances and have someone from an educational point of view see what help can be given to my kid, rather then wait for God knows how long.

OP sadly you were misinformed, by 2021 the relaxation of the rules had ended. Apply for an EHCNA ASAP. If you apply now there is still time to get a special school named before September. If you don’t need to appeal the process takes 20 weeks. It is the EHCP that opens the door to special school, you don’t need any additional reports to apply for an EHCNA. You have more than enough evidence to get over the threshold for assessment and further assessments will be part of the EHCNA.

No, don’t EHE, parents often find needs are met quicker when on the roll of a school. It’s too easy to sweep needs under the carpet when parents EHE. The LA will say you are making suitable arrangements and they are relieved of their duties. Then when DD becomes compulsory school aged if you still haven’t gotten an EHCP naming a special school and DD cannot attend mainstream the LA have a statutory duty to provide alternative education.

Blusterylake If a child without an EHCP gets a place at a school via the normal admissions arrangements the school cannot legally refuse to admit a child because of their SEN - see this IPSEA page. Admitting a child and making reasonable adjustments once admitted are different things. Widening corridors as an adjustment is not likely to be considered reasonable if there are other suitable schools nearby.

OP, you might want to ask MNHQ to move this to the SEN board. There are some very knowledgeable people on there.

God, but you sound amazing OP. I imagine your DD will have every chance to reach her full potential and it will be all down to you and your unwavering, relentless efforts for her. You are a hero. That's all.

@ryderr Are you familiar with The Children’s Trust charity? They have a special school specifically for children with severe epilepsy & other brain injuries. It may not be anywhere near you of course but there may be similar in other parts of the country.

With regards to the various reports, they can all be gathered as part of the ehcp needs assessment.

So I take it you have put a application in for mainstream as the deadline was last week.

I dont know the exact figures but if your dd care needs go over ( I think dont quote me ) 10k then you will need a ehcp. If that is full time 1:1 then you will certainly need a ehcp. My dd has just been awarded a ehcp with 12 hours 1:1.

The process takes 20 weeks..so if you start today you should have it in place for June at the earliest.

Without a ehcp your not going to enough care I dont think. Some schools will put provision in place and then apply for the ehcp but this isnt ideal

OP where in the country are you?

You absolutely should be getting support with this and lots of other parts of her life. Sounds like you've slipped through a big gap. Health visitors, GP and nursery should all be offering support with this.

@pinguwings Cambridgeshire area.

I know we've definitely slipped though the gap. I've tried clawing my way back, but without any light at the end of a supposed tunnel, I'm just fumbling around in the dark making my own exits, so to speak.

@WhiteJellycat applications were submitted 2nd week of September, along with me badgering schools over the phone for 3 months for someone to talk to about suitability of the school to my daughters needs. First time I heard back from anyone was last week.

@Decorhate no, but will definitely look into it this week!

@Imitatingdory lots of businesses, NHS jobs, and council related jobs in the area are still very much on the 'we are working from home still, so expect a reply in 1-2 tax years' mentality.

Can I just thank everyone so far for taking the time out of your busy schedules to give me all the information, kind words and advice.
You've all been a massive help today.
And I really appreciate it 🖤
You guys have taught me more than I have learned this last year going through this on my ones 😭

From working in a mainstream school with children with special needs I would highly recommend you look at special schools. In mainstream even with a 1:1 we rarely have the resources/training/support/space to support children with complex needs and once a child is in mainstream it can then take a while to get a move to a special school as the Local Authority aren't so bothered if you've got a current place. Special schools provide so much fabulous support to the children they work with and the families too.

lots of businesses, NHS jobs, and council related jobs in the area are still very much on the 'we are working from home still, so expect a reply in 1-2 tax years' mentality.

That may be the case, but the LA are not above the law, although they may think they are. And there are ways of enforcing DD’s rights if the LA breach the statutory timescales.

I totally agree that covid delays dont trump law and statutory duty. Your LA can say whatever they like but if you was appeal or doing judicial review they would get a reality check pdq

UPDATE.
EHCP has been started.
GDA home visit was done yesterday.
Her speech and development currently sits at between 10 and 18 months with some things.

I don’t have any advice, but good luck!,