To be so fucking angry

[Crystallizedring]

DS had another settle at school today which was storytime with teacher. DH had to carry him in to school (frankly I'd have given up then as it was never going to go well with that start).
DS cried when DH left and stood by the door for the whole session which was 30 minutes long and DH picked up early. During his session DH talked to the head, who admitted they wouldn't be able to cope with DS very well. That he would need short sessions and long transition period.
None of this is a surprise, none of this is unexpected but I'm so angry, not with the school, but with the LA who refused to assess him for EHCP.
We are obviously challenging this but I'm just so angry. Every single professional who sees DS knows he has additional needs, every single professional has said he's going to need extra support or a special school place. How can they refuse to even assess him with so much evidence? What if they still refuse? Even if they agree to assess and put a plan in place it takes 20 weeks.
What is supposed to happen to DS in that time? How can they refuse to assess a non verbal 4 year old who is in nappies and has the emotional, social and intellectual age of a child half his age?
What are the school supposed to do when they have 29 other children to teach? We're supposed to have a meeting with school before the end of term to work out how to help DS but I don't know what they can do.
I am just so sad that DS is going to start school and be lost because the LA are too stupid to assess him.
The amount of anger I have is unhealthy. Am I being unreasonable to be so angry?

My wife & I have two autistic children one with an EHCP one without.

The one with an EHCP has one that basically says 'look after this child'

The one without hasnt been at school, for over a year and will almost certainly need a specialist place at £100K PA. When we went to Mediation the County rep could not understand why the application from the school had been turned down but they turned it down again.

The inference is obvious you wont get an EHCP that costs the LEA money

It's not the LAs fault - they have been underfunded by the Tory government at the same time as the internet reduced use of carparks and shopping centres so many are on the verge of bankruptcy. Best thing you can do is vote on Thursday to get rid of the Tories. Things will likely take a while to improve as it's such a mess at the moment

I don’t have any advice but wanted to say I am so sorry that you and your child have to go through this. The lack of support for children in this country is a joke particularly those with SEN or disabilities. It makes me so angry too!! Wishing you all the best!!

As a previous poster said, contact your MP and local councillor, we did this with our ds who was 9 at the time, Primary school admitted there was no more they could do for him, which did help.

We emailed our MP and local councillor and they were fantastic and really helpful in securing a placement for our ds at a complex needs school of our choice.

Our ds is 24 now and while it had been a battle, it was well worth the fight, he absolutely loved the school, as we kept telling them, we wanted what was best for our ds not what was best for us as his parents.

Good luck!

I may be wrong but I'm sure If he is deferred a year you don't pay for nursery as he's funded 30 hours .

"The inference is obvious you wont get an EHCP that costs the LEA money"
This was exactly how it was 40 years ago, 30 years ago and 20 years ago. I don't think it has ever got better or changed. Parents were struggling to pay for private schools with small classes and extra help back then too. IME of at least two head teachers, they didn't "believe in" dyslexia, dyspraxia or ASD. Even going to appeal was a shocking experience because of the lies and incompetence of the LEA. It is an absolute disgrace OP and I am so sorry it is happening to your child.

Hi OP, can you describe how your DS has regressed since being at preschool? Is there any possibility that this would continue even if he was in school?

Some children with additional needs really struggle in busy mainstream environments, even with the support of an EHCP.

It is easier to get an EHCP when your child is attending an educational setting, even if it's just nursery. They have access to specialist services such as Ed Psych and Speech/Language Therapy, even if these resources are stretched and hard to access.

Do you actually think the school is going to be the right environment for him? If he's still not verbal and in nappies, does he actually need more support ie/a special school? As @twilightermummy accurately describes above, it's an absolute FUCKER trying to get a specialist setting when your child has started in mainstream. In my (bitter) experience, it's better to aim for the special setting from the start if you think it's going to be needed.

If your DS was settled in nursery I'd defer him for a year and let nursery help you fight for the EHCP. It doesn't sound like he's ready for school yet. I very much doubt school will have the resources to support him in the way that he needs, and he sounds as if he's a very long way from where the other children will be.

I'm sorry this is such a shitshow. It is. And it won't be any consolation at all to know that you're walking a very well-trodden path. You have to fucking FIGHT and FIGHT for everything. Even things that you think will be obvious. I know the LA is short on funding but it always seems to be our SEN kids who suffer the most. The system is utterly woeful. If people haven't experienced it, it's hard to comprehend just how inadequate it really is.

For context, I have two autistic DC (and I'm autistic/ADHD myself). DS has high needs and was diagnosed just before he turned 4. My DS sounds very similar to yours at age 4, and our LA also initially refused to assess (just before he started reception class). Thankfully I managed to get them to reverse their decision by kicking up a huge fuss, and DS got an EHCP with the maximum amount of 1:1 support - which shows how ridiculous their initial refusal decision was. He later moved to special school and that was another huge bastard fight. I won't even begin to describe the fights we had for DD who wasn't diagnosed until she was 10.

I honestly sympathise, but this is how it is. Get all your evidence and fight. And be prepared to keep on fighting every time you need something else for your child. It's awful, but this is how it is. I was also the SEN school governor for 5 years, so I've seen it also from the school's side and their frustrations with the LA too.

I don't disagree with you about the Tories, but I have to say the lack of competence, efficiency, and care demonstrated by the LA also contributes to the absolute shitshow going on.

They do have limited funds but there is a complete lack of logic, empathy, and understanding in their processes and administration.

Our case worker in the LA just ignored a complaint we sent in.

They also took three weeks to tell us the reason we had been refused a change of setting. Eventually when I phoned I managed to speak to someone different and they literally read the note on a post-it on the top of the file!!! Three weeks I'd been waiting and the information was right there.

Utter lack of care and incompetence. It's not just funding.

I'm so sorry to read this. Your anger is completely understandable and I'm sending hugs.

the LA are too stupid

Not stupid, no money.

Vote wisely on Thursday.

Nursery seem unwilling to keep DS for another year, even though he is a summer baby. They think nursery is no longer really the place for him. I'm not sure why. He's not violent but is in his own little world.
When he left toddlers he was saying more words and was starting to play with other children but that has all gone now. He also finds the room overwhelming with 45 children sometimes it's actually busier than school (although obviously more staff too).
I really don't care how overstretched the LA are or if they are short of money. All I really care about is my son.
I will write to my MP on the weekend and see if that helps.

Keep him in nursery for another year while they get the EHCP. Will much less traumatic for him and you.

Sorry just seen update. It’s not up to them it’s up to you.

I have 6 children 3 have asd. None of them got a diagnosis until age 7+. We had very similar the eldest children suffered going to school for a couple of years - biting herself and incontinent with anxiety and basically no extra support . In the end after my eldest told me she didnt want to be alive anymore i picked them all up walked away and never went back.

We home ed for the rest of their school careers the youngest 3 are still home ed (youngest two have never set foot inside a school). My 8 year old just got her diagnosis of asd a few weeks ago and i am glad theres been no school battles.

Eldest started college for a levels with extra support from college for exams (no echp needed at all) and is about to do biomedical science at uni. Next child is training as a bricklayer and third has just finished sitting gcses as a private candidate.

not everyone wants to home ed which is fine but for us it turned what seemed like a nightmare around.

I have every sympathy OP, it’s just not good enough, kids are being failed by the system. Definitely get your local MP involved, once the election is over.

If your child has regressive autism the changes that you observed will have had nothing to do with the setting. While a big room may well be overwhelming for him, in regressive autism the changes would have occurred anyway.

Just mentioning it as it may allay concerns about keeping him in a nursery setting for longer. It’s unlikely to be the setting if he’s experienced true regression rather than just temporary overwhelm.

Every SEN parent would say the same as you re fighting for their child - the comments re LA funding and shortages are really just to underline the fact that it’s a big fight, not that you shouldn’t do it. It’s helpful to understand what you’re up against.

As I said earlier, unfortunately it’s an experience that many, many SEN parents are forced to endure repeatedly throughout the entire school years to get what their child needs. And in many cases, its parents fighting to get what their child has been legally awarded but isn’t being delivered because of shortages.

It’s neverending because the system is broken. Be prepared because it’s not just one fight at the start, the same issues crop up again and again and again. It may sound disheartening but it’s important to appreciate that even when a provision gets agreed, sometimes it an even bigger fight to get it delivered.

The system is a nightmare to negotiate and everything is a battle. It can be really helpful to have the mainstream school on side to push for EHCP and a more appropriate placement, you could consider keeping him on role next year and him attending with a significantly reduced timetable of whatever he can manage. I went through this with my son and he now has an EHCP and attends a lovely special school. I also work for the LA and it's heartbreaking to see the system in such a mess, their hands are tied by central government underfunding and unrealistic expectations. Good luck, you will get there.

THIS!

I had similar
My ds was diagnosed with autism age 3
I couldn't actually get a school to take him,quite a few just said they couldn't meet need
Which In hindsight I was grateful for their honesty
Because when one did take him ,I was so pathetically grateful ,I didn't remove him quick enough when they labelled him a naughty boy said he didn't need an ehcp ..then they expelled him
Most of his schooling was me home educating him and a few useless tutors the LEA threw in occasionally.
It was a nightmare,even after getting the ehcp , nothing improved untill around age 18 where I fought to get him in a private college with one to one tutoring
He now has very good GCSEs and science and maths A levels at BBC grades .
My enjoyment of having him ,was ruined ,not by his autism
But by the education system,that didn't care and was neglectful from teachers through to the top of the LEA ,it's rotten right through.
The 20 years of dealing with these people has left us both traumatized.
As my son is now 25 ,I had hoped things had improved
But the more I read and see and hear ...it's actually getting worse
And I don't recall one politician having talked about this ,and how they will improve it ,come Thursday

A slightly different thing, but when I worked for the Benefits Agency years ago, if someone was not getting what they thought they should they would threated to go straight to the Secretary of State. As soon as one of those letters arrived everyone started jumping around and things happened.

I'm not saying this will help you, but I don't think it would hurt.

The council refuses automatically, at every step. It’s not personal, just process. Heartbreaking but you have to kick down a door at each step to get anywhere. Find a charity locally to guide you and don’t take no for an answer.

Every council is similar but Labour councils doing this feels like a betrayal. Heartless.

My eldest was like this and we struggled with school for a year and now we home educate and it's been transformative for him. Not saying you should or that it's even possible for you but it is something we had never considered previously.

Children with SEN are let down time and time again - it makes my piss boil too @Crystallizedring so YANBU

As I understand it, you have to push water up a mountain to get the assessment done which for working parents is impossible. IDK if there are charities that specialise in providing this support, but its worth a look. The school should also support you.

It made me laugh when parents were critical of education during covid, so many complained to me until I said welcome to the workd of parents with kids with disabilities - almost all of whom do not achieve what they could becayse of how they are educated or not as the case mainly is.

Sending a hug xxx

@Crystallizedring

Yes you have every right to be angry. The whole system is woefully underesourced and underfunded - with schools barely able to keep their head above water.

Just a different angle - my son was awarded an EHCP this time last year, which meant a different application process for reception (his mainstream application was null and void after being granted an EHCP.)

One school outright rejected, another school attempted the same. I thought he would have no school place at all - hadn't even started considering a specialist school (which have long waiting lists, long travel time, few and far between in our area).

After a week of fighting and crying he got a mainstream place.

In retrospect, I’d have made sure he had a school place before getting an EHCP. In my experience, schools can use them to exclude children.

You must appeal. Do that today.

Have a meeting with school. Find out how they plan to care for your son whilst he is there....

I'm in a similar position. My 10year old is in y5 and to be honest his entire primary education has been a shit show. He is still doing Y1 reading and phonics. He is autistic with specific learning difficulties. He can barely write. He has an EHCP and I am gearing up to have the biggest fight of our lives next year to get him in to a specialist secondary school. Case worker is already playing silly buggers with the Senco over when we can have his transition review. I'm resigned to the fact I'll be going to tribunal and we are saving up for this eventuality.

I'll be writing to my MP about it all (this helped when we applied for his EHCP too-we got seen by an EP two weeks after I complained to MP).

Fight for the EHCP and, I don't want to be a negative Nelly, start working on accepting that once you have the EHCP you will have to keep fighting...I thought once we got an EHCP that all would be rosy but actually it isn't....I'm sad to say there's a new issue most of the time.