Reception- Struggling and crashing out.

[Orchid887]

Looking for some honest advice from parents who have been through the wringer with Reception transition, particularly with neurodivergent / highly sensitive girls.

My 5yo DD started Reception three weeks ago. Prior to this, she was at a nursery and while she had high sensory needs and emotional dysregulation at home (that she calls her big feelings), she generally appeared settled, bright, and happy there.

Since starting primary, everything has completely disintegrated. I'll try and just give the highlights:

Restraint collapse - She "masks" heavily at school and is described by teachers as quiet, shy, and compliant. (My child has NEVER EVER been described as quiet...!) But the second she gets home, her nervous system completely explodes. We are talking 2 to 4 hour meltdowns involving self harm (head banging, hair pulling, biting herself) and physical aggression toward me. She tells me she's terrified of having "big feelings" at school. This can happen multiple times a day. When not in a meltdown, she's withdrawn and quiet and honestly just world's away from my little girl.

Situation mutism - She becomes completely non verbal when overwhelmed at school. She is too frightened to ask for basic needs. Recently she left her bottle somewhere and didn't drink all day because she had no access to water and couldn't ask. She's now on her second infection in three weeks likely due to dehydration.

Skills - Worksheets from early on show detailed, creative drawings, whereas now under stress she just scribbles erratically across the page. Which is further upsetting her as she's always wanted to do well.

Sleep - Her sleep has totally collapsed to just a few broken hours a night. She wakes in a state of total, frantic hyperactivity.

We are currently awaiting Autism/ADHD assessments, but as you all know, the waitlists are long.

School tried to implement some accommodations (like access to a sensory corner), but with supply teachers and busy TAs, it fell apart on day one and she seems to have lost trust. The teacher emailed me yesterday saying DD had said she was "struggling" and attached a scribbled worksheet, the classroom environment itself is driving her into total sensory overload and panic.

I am at breaking point and strongly considering deregistering for home education to let her nervous system recover from burnout, while we wait for clinical assessments and look down the line at what we can do.

My questions for the Mumsnet hivemind:

Did anyone else have a child collapse this fast in Reception? Did it ever "settle," or was taking them out the best thing you ever did?

If you deregistered early on, did it impact your NHS assessment pathway or EHCP application? Particularly looking at EOTAS. (I'm terrified Local Authority / NHS will say "she's fine at school, it's just a parenting issue")

How on earth do you handle the guilt when your child says on one hand they "wants to try to be good at school" but their body is physically breaking down from the stress? How do I know what the right call is?

On one hand I don't want to force her to keep going until she fully breaks. On the other I don't want to jump the gun.

Please be kind. I'm running on empty, coping with my own health issues, and just want my happy, creative little girl back.

Hello, didn’t want to read and run. Have you looked into Right To Choose for assessment? It means weeks or months rather than years of waiting.

Do you have an EHCP in place or in the progress of getting one? What plans were in place with school prior to DD starting? Did SENCo set anything up with you beforehand?
What's the school like overall for SEN support? Is the teacher coming up with solutions or is it you asking for support for her?
What's your routine like outside of school? Whats the going home routine? Is it always the same, does she go to any wrap around care?

@Orchid887 this sounds really stressful.
coulD you afford to pay for a private assessment? The wait times for all
these things all seem to be huge and I’m thinking this could be the way forward Initially?

re school I think be really honest with them, tell them EVERYTHING and hide nothing. Try to work with them. Home ed is a big decision but maybe with the right intervention and support, school could put some things in place before this becomes a consideration. If you take her out and then need/want to get her back in this could be really difficult.

@EmmaOvary- Thank you, she is on right to choose, we had to wait until she turned 5 to get the ADHD one in, but they should both be 8-9 weeks out now, so not too long of a wait!

This website maybe helpful.

https://barrierstoeducation.co.uk/

@OneBiccieTwoBiccie
No EHCP in place. I had a meeting with the SENCO and it will be going forward.
I emailed all of my concerns over, and the nursery senco met with school. They said they'd send her a social story but this didn't happen. They told me about their various programmes of support but during our meetings over the past couple weeks, have said they like kids to settle in first.

It's supposedly one of the very best for SEN, and certainly the best I found in the reasonable vicinity. The teacher is the SENCO and came up with things like the sensory room being used as my DD has spent a lot of time hiding (often with her book! DD says to me that it's hurting her to keep it all in, so she hides for a break).

At home, she has a sensory blackout tent, spinner, trampoline etc. She uses all of these. She has a visual timetable and some calming choices PECS for when she loses her words. Oftentimes though, she's started working herself up in the car. Tells me it has to come out and she can't hold it.

It is always the same, we've kept it as such to help, no nipping to tesco etc.

She has breakfast club as a buffer (often I cannot get her in the car, so this gives us time to not worry about being late, or have somewhere to be if she's early.) She likes breakfast club so that helps. No after school club.

@Besidemyselfwithworry- We are on the right to choose pathway, the current wait time is 8 weeks for the ADHD assessment and 9 weeks for Autism assessment. So thankfully not too long! Sadly the £££'s is out of my range. I have, however, booked her a private OT assessment for sensory integration.

I've had two meetings now and I've given every gory detail, which feels tough. I've also sent it all in slightly less emotional emails..! Hopefully we can work together to figure something out. It's just so awful watching her disappear.

Thank you @Grumblegrumblegrumble

Trust your instincts and if you can home Ed it’s worth a try. Alternatively You don’t need a diagnosis to ask for reasonable adjustments at the school and as she’s in reception it’s worth asking for a reduced timetable like mornings only to see if it would help reduce the demands on her. Getting EOTAS is very hard and with the changes coming in send legislation it will be even harder if not near impossible to get. We have it but I have a teenager so we will age out to post 16 before the legal guidance changes. If it hadn’t been useful to pay for exams I wouldnt have bothered and just stayed as home Ed as dealing with the LA is horribly stressful.

It’s hard going I’ve found more home Ed communities are on face book. Locally we have lots more for the U10s it’s harder in the teen years. I would look up your local groups and try to make connections locally.

@AutumnHope- Thank you, to be honest while home ed would have been so far off my radar 4 weeks ago, it is definitely something we could figure out now. Interesting to hear about EOTAS, technically we wouldn't need it, certainly without any exams etc. I'd rather not add extra pressure to the situation!

We've got a few things in place, but even on reduced it's having a huge impact. And she turned 5 already, so it's got to be built up again soon. Which is tricky as it's getting worse and worse for her. I'll take a look on Facebook, thank you!

No EHCP in place. I had a meeting with the SENCO and it will be going forward.

What exactly do you mean by this? Do you mean the school is going to request an EHCNA? It isn’t in the SENCO’s gift to say an EHCP will be in place going forward. The school isn’t the one who decide to issue an EHCP.

Personally, I wouldn’t deregister and EHE. It is often easier to get support when you remain in the system. Crudely, at the moment, you are someone’s problem. If you EHE it is easier for professionals to sweep DC’s needs under the carpet.

It isn’t lawful but LAs sometimes refuse to assess/issue an EHCP because they will take the gamble that a proportion of families who are EHEing will continue to EHE rather than appeal.

If you get an EHCP, the benefit of not EHEing is that an EHCP can fund far more than the vast majority of parents can afford to fund themselves, including therapeutic provision.

EOTAS/EOTIS via EHCPs is only legally possible if it is inappropriate for the provision to be made in a school (or college or early years setting). You would need evidence of that. It isn’t the easy option. Many have to appeal for a proper package.

Apologies @roaringdragon, that was my bad typing, not my bad understanding! The sentence was meant to read "I had a meeting with the senco and it will be requested going forward".

I think this is the difficulty I am facing. Wrongly or rightly, there may be more help while we are in the system and someone's "problem". Equally, is that supposed support worth the potential of my daughter burning out completely? She's a hyperverbal, bright and curious girl who loves learning. Or rather, she was 4 weeks ago. She's a barely verbal, shaking wreck who spends most her day screaming and hurting herself and me.

That is not sustainable long term. I have said to the school that I cannot (and will not) physically force her into the car. They agreed it's dangerous for the both of us. Which means getting her there is getting difficult. Is this a battle I keep fighting and at what point to a recognise that it's doing her some serious damage.

Remaining in the system and not deregistering to EHE doesn’t mean you have to force DD to attend the school if she isn’t able to. You don’t. You can inform the school she is too unwell to attend just like you would if she has a physical illness that meant she was too unwell to attend.

Then, if DD is still unable to attend once she is compulsory school age, which will be after Christmas if DD turned 5 since the start of this academic year, the LA will have a duty under section 19 of the Children and Families Act 1996 to ensure she still receives a suitable full-time education. While LAs have to power to make alternative provision for DC below CSA, they don’t have the same duty to, so they mostly don’t.

I would ask the SENCO what requested going forward means. If it means anything other than an EHCNA request will be submitted to the LA within the next week, I would do it yourself. On their website, IPSEA has a model letter you can use.

I would also ask the SENCO what outside agencies they are going to bring in/ask for advice from in the meantime.

Follow up all verbal conversations with emails so you have a paper trail.

DD was friends with a girl like this in nursery. I think she managed until the end of year 1 until it went wrong. She had a year or more out of school, eventually some home tutoring provided by the LA, but is now happy ( I think and hope) in a special school.

Bless you - you sound an amazing mummy @Orchid887 and I hope things get better for you and your little girl.

Hello

The thing that made a big change for us was melatonin. Way less meltdowns after school. When we initially started school it was awful- screaming, slamming doors, crying, unable to sleep. We were lucky that we referred for assessment age 4 so got a diagnosis by age 6. I believe children over 7 (that’s a guess but ballpark age) go through different referral process and it takes much longer.

But yes- melatonin has meant she can fall asleep in 20 minutes which means she can deal with the day more. She still has a lot of demand avoidance and wants to spend most of her non school time in the home but we are working on that.

Other than that- having meetings with school and telling them that she wasn’t coping meant we could get sensory breaks in her day- and that helped massively too.

@roaringdragon- this is what we've been following so far. I'm interested in what the alternative provision may look like so I'll look into that. I'll clarify with the senco tomorrow and if it isn't an immediate plan, I'll submit myself by the end of the week.

All meetings have been minuted and sent through so that's helpful.

@ExplosiveSneezes- Oh bless her, glad to hear things have improved for her!

Thank you @Besidemyselfwithworry😊

@Snowcanwait- Yes I think getting the poor girl some sleep would help her massively. It shouldn't be this much of a battle for a 5 year old who can be awake for 24 hours, be slurring her words and falling over everywhere..!!

What alternative provision (AP) is provided depends on the child’s individual needs. It must be suitable. Sometimes LAs like to think they can limit AP to whatever they want to provide, but it isn’t the case.

There’s a huge range of possibilities for AP from tutoring (at home, online (including online schooling), in the community or at a centre/unit/provision the LA has. Group or 1:1. Live or pre-recorded. Traditional formal tuition or not. Academically focused or not.) to formal AP settings (e.g. care farms, forest schools, tuition centres, gaming APs…) to mentoring (online or F2F) to a tutor/LSA/HLTA taking DC out to places in the community to so much more including things like music/sports/arts/cooking/therapeutic provision. Even if DC cannot access direct provision, there is provision that can be provided, e.g. Spectrum Space boxes, LCB Education provision.

Really feel for you. Sounds so tough for your little girl and for you to witness it. I am a teacher and lots of our Reception children are struggling. It's a big change. However, it does sound like your child will receive a asd and/or adhd diagnosis and I feel many (most?) Mainstream schools are just not the best places for many send kids. I worry that the kids have to work so hard to conform and they will receive lots of negative reactions even from kind, patient staff because there are certain behaviours that are expected at school. She will receive more / better support going forward in school once they get to know her and when writing ehcp etc, however she might not need much support if you home schooled. I think I would if I could if I had a child with additional needs. I know that's a big decision. How do you feel about home schooling? There are lots of support groups out there nowadays.

Would it be possible to flexi school her, rather than totally remove her? Perhaps attending just mornings which is when reception usually do most of the learning of phonics etc. If she could get home after lunch the hours of meltdown would end earlier in the day, so maybe she'd be calmer by bedtime and more able to settle.
Would you consider trying to break the exhaustion cycle by letting her go to sleep in the car for a few nights then transferring in? I've had to do this sometimes when DS is just totally overwrought and can't sleep. Apart from getting him to sleep, I find knowing I have a backup plan immensely reassuring which probably comes across in my emotions to him and feeds into me creating a calmer atmosphere.
What do you do after school?
My sensitive and highly emotional son whom I strongly suspect is autistic/ADHD has just started reception too. We're waiting for the teacher to give her opinion on the social struggles before asking for right to choose referral, so not as far down the path as you yet.
Meltdowns are bad on the one day he has to go to after school club, obviously tiredness plays a part there too. But other days where it's me or DH collecting, we always go to the park immediately. He spins on the spinny thing, a lot. He shouts. I do my best to keep him away from other children. Luckily it's a bit out of the way park.
I take snacks and we stay there until it's time to go in for me to prepare tea. Then DS is a couch potato until tea time. Sometimes he wears ear defenders if little sibling is being noisy or he wants to. I try to have something organised for after tea like colouring or a game because free play seems to end in tears every time. Then bedtime which is chaos but has been slightly improved by having calming music playing.