To be raging that my dd is being so utterly failed?

[SocialistSally]

My dd is autistic, she was diagnosed age 6 (which is very rare with girls). She’s now 11 and been out of school since April, burned out from masking and the pressure of school.

Before that she was working well above expected levels. We are at the draft EHCP stage and have names provisions, but everything is full. Every autism unit, every specialist provision (state and independent) that could meet her needs and still provide the education she deserves.

I’m so angry for her. We’ve only got this far because she is out of education. She shouldn’t have had to wait for her to be in crisis. I’ve been fighting for her since she started school and I’m exhausted. I’ve been ill with the stress of it (in hospital).

She has been utterly failed by the system and she’s only 11 and deserves so much more. And I no longer know what to do to help her.

They can get AP without an EHCP, It is nonsense that this is impossible.

I have had 2 who have had it whilst in the process of applying for one.

They might argue that but unless the child has been deregistered it is possible that the school cannot meet needs BEFORE the EHCP is applied for, the application process takes months.

It is inconceivable that a child should be legally denied an education because the EHCP process is so long winded.

My kids were both OK in primary school till about year 5. Then they were not. School could not meet their needs and they couldn't go without severe damage to their health. This is not about parents not wanting their kids to be in school. No one would wish this on their child or themselves.

Just a thought but is homeschooling a possibility? My friend pulled her autistic son out of school and he thrived. Lots of homeschooling Facebook groups and support. No exams to sit. They can still go to college or university.

If DD can’t attend because of her MH/SEN she can’t reasonably attend. Ultimately, it is the court who decides.

I HAVEN’T removed her from school. She is unable to attend due to illness/disability. It’s this sort of comment that particularly grates as if I’ve made a choice for her to be at home.

She is technically in year 7, we applied to EhCP in May. Previous to that she was presenting as ‘fine’ and therefore no assessment for EHCP was granted. It is very common for autistic girls to mask for so long that they burnout. She had a tricky year 5 and then the pressure of year 6 was too m much.

I work from home so I look after her. I know many parents of similar children who have had to give to work, often then relying on UC and carers allowance.

I’m more than aware how difficult it is. I have DC with EHCPs, including one with EOTAS. I have supported thousands of parents to enforce provision. Even though it is difficult it is important to give parents information about the law and how to enforce provision rather than accept unlawfulness otherwise they don’t know what should be provided and how to get it. That’s not blaming parents for the situation, but sadly DC whose parents know the system and advocate get better support. It shouldn’t be like that, but isn’t going to change any time soon.

I didn’t mention it being as simple as finding a small private school?

What is the issue if she is put in school in a separate room /out of class? What happens?

Or is it during breaks and lunch etc.
As at secondary there is at dd school homework club or quiet space or library etc.

Definitely more flexibility for asd students is needed. Ds has to attend music lessons despite sound being an issue.

Are you focusing on secondary provision?

No, because she doesn’t want that and I work full time.

All the secondaries near us are huge, 2000 pupils. It is the noise, the smells, the amount of people in the corridors. The constant transitions from class to class (translations are very difficult for autistic people). It is the pressure of assessments.

She needs low stimulus classroom, fewer pupils in class (her hearing is so sensitive she can hear everyone in classroom and can’t concentrate on work), fewer teachers. She needs a sensory room to help her manage and staff that are fully trained and understand autism, especially in girls.

The senco at the mainstream secondary she has a place at is excellent and very accommodating, but has also agreed that they can’t meet her needs.

I know you know and I know you are just trying to make others aware

I just think it is important to point out that even in the knowledge that it is possible some people choose not to pursue because they can't because they don't have the energy or can't give up work etc.

The point about small private schools wasn't because you've mentioned it, it was directed really at those on this thread and others who seem to think that parents are pushing for better educations than mainstream can provide, which is categorically not the case. No one would willingly choose to put themselves through the rigmarole of trying to fight for appropriate education. The emotional and financial cost of having a child who can't be in school is massive.

edited to state that my post crossed with several of the OPs, making my post mostly redundant

I appreciate that it may be related to the transition to secondary school (I don't know if she's y6 or 7) but if your daughter was diagnosed at 6 and was working well above expected levels, she presumably was ok in school for a while, and the burnout was a more recent thing? Because if she'd but been and to go in for more than the occasional hour throughout, and you aren't able to homeschool, she wouldn't have been able to achieve those levels.

How are things with the school? Are they willing to work with your to determine what changed and if there is anything that can be done about it? If she's year 6, then I guess the biggest priority is getting her a suitable school for September. If she's year 7, and you withdrew her in April, then does that mean she doesn't have a place at secondary school?

She has a draft EHCP. We have named three provisions. But I also know that every special school in the LA and many in the neighbouring one are full.

@Soontobe60 saying she has been fine in primary shows a complete misunderstanding of autism and masking. She was burned out. Social communication and relationships get harder as you get older. Much trickier to understand if you struggle with social cues. Work becomes more pressured. You start doing comprehension in language, which she finds impossible. So many reasons why many autistic children are fine until they aren’t.

@lifeturnsonadime ah, sorry I misunderstood your post. The whole system is broken, and only going to get worse.

All of my dc have autism. One by one as soon as they get to secondary age they can’t cope and we have had to home educate . It’s happened to others we know too-it’s definitely a trigger point for burnout 😞

It is going to get worse because ultimately no one cares about these kids.

Inclusion was really about saving money. They need more specialist provisions not less.

I feel deeply sorry for teachers in mainstream schools who are (largely speaking) trying to do their best.

And it breaks my heart to see posts like those from @SocialistSally, when you've been in this position yourself you know that this child cannot be in school and that there is no choice and you also know what a hard road needs to be walked to resolve this in the child's best interests.

People who haven't been in this position largely just don't get it or think it is weak parenting. They haven't got a clue.

OP I have an ADHD and ASD DD14. I am also a lone parent so homeschool was not an option.

For secondary school I found an independent/private school with really good SEND provision. Class sizes of 12 small school etc. her masking and burn out at year 5/6 were overwhelming her. She is flourishing now.

I don't know your finances so for argument sake I'll assume you can't afford it. However....

I had a call this week with a SEND education consultant called Lorna Woolley. I was consulting with her on post GCSE provision but She specialises exactly on these cases. So please do get in contact if you want but my point is this, she said you need a lot of evidence on the EHCP that basically points towards the schools you are targeting.

And yes I'm afraid that may well be out of the area but I make that work with flexi boarding/week boarding. This has actually been great for my DD.

You probably know most of what I have written, but you may well have to widen your search criteria and get the evidence that supports your choices, and your choices will need to confirm they can accommodate your DD.

It's so bloody complicated. I was lucky I could chuck money at the problem but when you don't it may well be worth investing in working with a specialist consultant like Lorna for example.

I have quite a significant position working with SEN children.

The system is broken. My heart aches for children like yours OP, and others, which are not getting an education.

I don't know why the sea change, but there are so many more children with significant needs than there were 10 years ago. The amount of pre verbal 5 year olds has risen exponentially.

Our SEN service is beyond crisis point. All special schools in our area are taking over PAN and then tribunals are making them take more.

And, as always, it's the ones with money and education who are successful in getting their children places. If you're poor/don't understand the system then you haven't got a hope, and your child is being failed.

I could write so much more, but it's depressing.

Hi op. I wish I could give some advice or words if wisdom but my dd was in exactly the same boat and is still being let down.

My dd was diagnosed aged 8. Burnt out age 11. Only ever managed one day in mainstream. Tried to take her life aged 12. Was out of education for nearly three years. We finally got her a place in alternative provision which is a lovely school and she's very happy there. But, although she's extremely bright the school doesn't concentrate on exam results. So she's just started her GCSE years. She's an amazing artist yet there no art teacher and no art GCSEs. She's taking five GCSEs , English, English lit, math, combined science and R.E. She's not even remotely reaching her potential. And it seems it's the same at all our regions ASD provision schools. It's a shame.

While she was out of education we had tutors through EOTS but she really wanted to be around other children. So I'm grateful that she did get a school place and that it's really helped her anxiety, but it's just a shame that she's just coasting through this stage in her education when she's capable of so much more.

Best of luck op

@SocialistSally if there was a school without ramps and a wheelchair user wanted to attend it would be a simple fix by getting ramps put in so it's not the same at all. If your DD feels anxious so won't attend her school there is nothing LA can physically do to change her school to make her able to attend is there? They could give her some worksheets though until something better is sorted so instead of just playing and drawing she could be getting on with more productive work so she doesn't fall behind her peers. Could she go on to one of those Maths sites people used during Covid. My Maths has some free activities.

If it was my child I'd be doing this.

So you’d give up work and lose your house because you couldn’t pay the mortgage?

We do some stuff, we have conversations about things. Most recently it was about the suffragettes and also the match girls strike (she watched Ebola Holmes).

I suggested they may offer her a special school further afield. Would you be ok with her being a boarder or not? If she goes to a special school, like my Foster Son did, they usually do less academic work and only a few GCSE's. Usually Some kind of Maths either Functional Skills or GCSE but it depends on all of the children's needs but if just 1 or 2 are capable of GCSE but the rest are not it's unlikely they will teach the GCSE. My Foster Son excelled at Sport but most DC didn't so they only offered BTEC level 1 Sport. Some type of English either Functional Skills or GCSE, often Art GCSE and some sort of Science again either Functional Skills or GCSE but often not double award.

My DH earns enough to cover the mortgage and bills. I was a teacher and I offered to give up my job to home school my Foster Son but LA wanted him to attend a Special School. Interestingly he was held back in the Special School only being allowed to sit 3 GCSE's and no 1-1 support and no competitive Sports, only when he left and went to a mainstream college last year did he flourish. Last year he got 5 more GCSE's in a year. Now he is at the same mainstream college where he has a 1-1 TA in every theory lesson doing BTEC LEVEL 3 Sports Extended Diploma. Throughout his time at the Special School where they did nothing at all through Covid I got him a private tutor at home 3 evenings a week. The thing is he loves learning but his special school offered very few opportunities lunch time was 1.25 hours long, break was 1/2 an hour both morning and afternoon and registration was 1/2 hour every day both morning and afternoon. Very little time was spent learning.

I don’t have a DH, so I am the only wage earner.

The three provisions we have asked for on her EHCP are all autism specialist units attached to mainstream schools. They are specifically for children who are able, but cannot manage the social and communication aspects of mainstream. They can actually access some mainstream, as they feel able to.

A generic special school wild be totally unsuitable for her.

Posts saying they would home educate often appear on threads like these. But, people wouldn’t do that if it meant their DC didn’t get the support they need. It isn’t just about academic work, it is about therapeutic and other provision.