Struggling to cope with how delayed my son is

[Coco9319]

My son is 4 and just started Reception at school. It's going okay, given the circumstances but it's just made it even more obvious the gap between him and his peers at school and I feel so alone.

I think my husband it's also dealing with the same feelings but I just don't think I can talk to him about it because he will usually say something along the lines of "but we'll never even remember when he goes to university, gets married, gets his first job", whilst I feel like all of those milestones are slipping away because I'm worrying about him even being able to live independently.

He is non verbal (a few words that come and go) and understands some single words and phrases. Most of his understanding comes from routine or situation. He can't sit down for the lesson, or at lunch time as he doesn't understand that there is an expectation to. Obviously he has very little understanding of toileting. He lashes out when he feels like he is not understood, but he's not mean or malicious - he can be really kind to the other children in his class.

I wish I could say that I'm fighting for an EHCP for him but the Local Authority are apathetic at best - I applied in September 2024 and have since discovered that there is a 90 week wait in my area for EHCP assessments. School are just putting 1:1 in place for him but we've been asked to meet on Wednesday to review how he is getting on and I just don't even want to go. He's been under paediatrician, SLT since birth because of his health conditions and has been diagnosed with GDD

He's always been delayed and had other health and medical problems since birth. He is happy, healthy, gorgeous and honestly takes everything in his stride. But this is the absolute worst that I've felt, I feel like I'm at rock bottom and have no idea what to do. I just want to cry and stay in bed all day.

I had a child with GDD and was told he was likely to be unable to walk or talk properly. I quit my job (didn’t return after Mat leave) and spent the next four years devoted to doggedly chasing down every possible bit of help that was available. The key to this was the community paediatrician who was able to refer to a wealth of services : I just kept asking and asking and phoning. We had Portage (at home play therapy look it up it’s amazing), weekly NHS SALT, private SALT, physio, OT. Then through the local children’s centre we unlocked weekly sessions where dc literally was taught how to play, follow instructions and be classroom ready.

of all the above the Portage made the most difference to playing and school readiness, weekly SALT meant he was able to talk as well as his peers by 5.

aside from some ongoing medical issues, no developmental delays now aged 10.

wishing you the best OP I can remember feeling how you’re feeling

Oh OP it’s just soul destroying isn’t it. My absolute pet hate is when every meeting starts with asking me what my hopes are for my son. I get why they ask, but I have no idea. How can I know what I want for him, except for him to be happy, when I feel like I have no idea what his future could look like. Will he learn to speak properly, will he catch up with his peers, will he fall further behind, will he be able to live independently?

The process is horrendous. I must admit to flinching every time I hear “they have to complete the EHCP in 20 weeks” because people just don’t understand how certain LAs totally ignore the law and DNGAF. We’ve been “lucky”, having just received our draft at 9 months.

Have you got anyone who has similar experience you can talk to in real life? It does help, even if they’re not someone who can fight your corner. Facebook groups are a decent place to start, they often have local meet ups (I must admit I have not taken my own advice here).

Sorry, you say the LA has agreed to assess. Do you have that in writing? They absolutely cant drag their heels on the timescales. I still suggest you contact SOS!SEN to see how to get the LA to act.

A family member of mine who is 6 is non verbal autistic and got an echp. Her school did a lot of the fighting for a special school proved to the local authority they couldn’t meet their needs and they got a move to a special school in time to begin year two after being in the school since nursery. We are already seeing the difference in her and that will continue so keep fighting and you will get the education he needs and I also witnessed it in a different situation same age same condition they were set to go court but got a call to say they’d been offered a space at the local special school so it can happen you just have to fight and keep talking to the school and getting them to push and help as much as they can.

I feel your pain as when you have a child with SEN everything us a slog. Two years ago I was worried wether my child would ever talk, be contenant, go to school or have friends. I was told by his nursery that he had no understanding.

I am please to say that he now talks (suddenly started came out with a sentence one day when he was 3, but was still very ‘transactional’ with his language e.g. can I have drink, until Easter after he started at school when he started talking about past events and thinks he would like to do or go in the future) . My son does have understanding and potentially seems to be quite bright. He still can’t hold a pencil correctly (he holds it in a palmer grip) but can write his name and some words. My son loves to read.

My son didn’t sit himself on the potty until 2 weeks before he started school. It took himself until Easter to recognise that he needed to ‘go’ and take himself to the toilet at school. It took me over two years to toilet train him but we got there and I am hopefully that we can night train him in the next few months.

Basically in the past year my son has made a massive amount of progress and I hope your son does too.

Your LA sound crap. Your said they have agreed to assess, have they agreed to issue yet or are you still waiting for an Ed Psych assessment?

This sounds dire - he is clearly not mainstream fit. Not your fault at all OP. I hope you get some answers soon.

I know there's not much I can say to reassure you.

But the child you've written about could easily be about my son.

GDD, significant speech delay, no where near toilet trained. He's 6, 7 in April, and he's resitting reception for the third year.

It sucks. At home I see this happy little boy, but then you stick him in a group of other kids and you see just how wide the gap is, and all I can think about is how disadvantaged he is going to be all of his life.

I don't for one second regret sending him to school though, even though it's mainstream, even though he's made no academic progress, even though they can't meet his needs.

We're 3 years in, we've just got it agreed he needs a specialist placement. It's been a slog, but I couldn't have got here without sending him in to school. He doesn't make it every day, some days he has school avoidance. Lots of days actually. But his speech has come along. Reception have had more resources than nursery ever did in terms of how they have built up evidence and we're in a much better standing for advocacy.

I can totally feel you wanting to scream through the phone.

Please if I can give you some advice for this meeting, please please please bring up AAC. I wish I'd pushed harder for my son. The school, the Ed Pscy, and the SALT all piled on me to say it would have an adverse effect on his language development but all evidence that we have says that is not true it actually aids language development, and above all your child deserves to have a voice to say I want this, I need that, I need space, I want to play. He deserves all of that and if they refuse they're denying him a voice. It provides functional languages, it's portable so he doesn't have to rely on a teacher to be present with pecs symbols, he can have autonomy which is a privilege every other child has through their acquired language.

Don't let them dissuade you by saying things like he needs to get the basics down first. This is the basics. He doesn't need to transition from low tech to high tech.

The what are your hopes questions are such a pain in the arse because it's worded to evoke an emotional response when really it's the prime opportunity to lay out your practical expectations.

I want my child to be properly supported in specialist provision. I want my child to have access to resources and provisions that cater to their social, mental health, communication needs, I want my child to have access to a provision where he is included by virtue of the facility and it's purpose and not included by proxy with limited access to provision etc. I hope my child gets into x school as their curriculum focuses heavily on life skills, I want my child to grow up to have equitable opportunities and in order to get there will rely on support from a trusted adult in a 1:1 provision so they can learn that they too have boundaries and deserve safeguarding by way of not having multiple adults involved in their intimate care thus learning their bodies aren't for everybody to be touching, etc.

I really hate the wishy washyness of the way LEAs word those questions, but it's an intentional design to make you incorrectly express your expectations.

We didn't need to have a private SALT fortunately, but we did cycle through 3 SAL therapists until we got one that could actually implement strategies that helped and got the school to understand that expecting him to follow adult led instructions wouldn't work and their repeated attempts to will set him up for failure and cause trauma and distrust.

They put in so many strategies, play based interactions and therapies into his school time table. The first was the curiosity approach, then attention autism, and then jump around music therapy, broke down workable intensive interaction as this hadn't actually helped in nursery. I wish this SALT had been his primary reporter for his EHCP because she was also clued up on AAC.

If you do go private they can provide reports that you can submit as evidence for his needs assessment which really bolsters what the LEA will fund. It skips the queue for NHS waiting, and they're able to be more creative in their approaches instead of sticking to NHS tick box exercises.

Where I'm a governor I'm sure that almost no child in reception has an EHCP, you're a head of the game having applied, I'm not sure if changing setting will slow the process or even stop it, I'd ask again we try to get them in very early in reception as the school won't see funding until it's all sorted.
On the parental side, I have an 18 year old nephew who had quite severe special needs, about 4 years ago his dad said he'd never drive, he passed his test, he's looking for and capable of some work, he's never going to be a Goldman Sachs banker (not all would see that as desirable anyway). All I'm saying is that things can turn around later, you may well be right about independent living, but don't give up hope, particularly if you get the right support early on.

Thank you all for your responses.

Just on a few points - I am not going to home school or defer him. We have worked so hard for the transition to school to go well, and it has gone as well as expected. I earn £55k and my husband earns £95k in careers we have worked years in and in jobs where we have a large amount of flexibility so whilst we absolutely would reduce our hours if forced to, it is hard to justify one of us leaving work to home school.

My son is under a community paediatrician who sees him regularly about his development. Portage in my area is for children with GDD under the age of 3, or not in education. I wasn't aware of the service before he was 3, so I think he's missed out, but I'll contact them to see what they can do.

"They have 20 weeks to act on EHCP". Honestly, no they don't. There are no real consequences to them not meeting the deadline. He has not yet seen an EP - a senior ECCHO told me to go and get a private EP assessment as it could speed up the process. No private EPs in Buckinghamshire worth their salt have any space. SOSSEN have written to the local authority on my behalf threatening legal action. The LA just don't care - i said above that its not even like a fight because they aren't doing anything.

I also live in a Local Authority who just don't care and don't stick to timescales. No amount of SOSSEN or solicitor letters make any difference; the LA face no consequences.

I am sorry. It is a constant battle to advocate for your child and there are times when you just want to be able to be a 'normal parent' for a bit.

I have a child who needs extra time, attention and support. They have lost out on huge chunks of that from me because of how much time and effort it takes to secure the wider services and support. I have times where I feel incredibly guilty because of that.

I also have times where the reality that my child will always need support- and that I will likely have to continue to fight for that - drags me down and exhausts both my body and mind.

No amount of helpful suggestions from others (or the perennial, 'you must take some time for yourself ') can change the reality of the daily grind.

All I can say is that there are times when your child will do something, make some small step of progress maybe, that reinvigorates you and you carry on.

Sometimes you just need other people to acknowledge it's hard, really hard.

You are doing an amazing job in very difficult circumstances.

Hi OP,

I do understand the frustration and you have every right to be angry and upset about it.

You can try and contact people to speed up the LA or you can wait, it’s your choice.

We live in the North and found an educational psychologist in London when there was a delay here. We didn’t end up going in the end as the council then suddenly could find an EP to see our son.

There are options out there but I know it’s not right having to pay privately to get to the support you need. It’s the only way we managed to get support in time.

You don’t have to sit back and accept the LA breaching the statutory timescales. Have you sent a pre-action letter? If not, you should do that. If you have and the LA has ignored it, JR proceedings themselves will resolve the situation. As LAs have been shown time and again, lack of staffing/resources is not a lawful excuse. Unfortunately, DC whose parents know the system and can advocate and enforce their rights get better support. It shouldn’t be like, but it isn’t going to change in the foreseeable future.

I've sent a pre action letter. The LA have until 7th October to respond. I don't imagine they will, so it will be going to judicial review.

Thank you

I'll consider looking around for an EP, but honestly I put all the stuff about his EHCP in the initial post to kind of avoid the barrage of questions about EHCPs because I'm sick of thinking about them! They take up a significant portion of my working day as well 😂

Totally. My job felt part time once the ehcp process was over as I was so used to doing both.

It is a very unfair and broken system for our kids.

I was so shocked. My son’s needs are very obvious when you meet him, which naively made me think the LA and people would believe me….

I'm really sorry you're going through this. The differences seem really stark once they're at school and everyone else's kids start learning phonics and adding numbers. It's like you have constant phases of grief at each of the 'normal' life stages. It doesnt help that you are constantly battling. Things often feel better once their peers are more appropriate, ina resource base or specialist provision or whatever, but councils seem to have this idea that we need to fail primary school first.
I hope he does get some moments of progression of his own, and you both get some of those moments of joy when your child learns new things at his own pace.

I feel so much better today. We've had a lovely message home about his day today from the Reception teacher.

They've moved the meeting to Monday. I'm so worried that its going to be a really negative meeting. My son is so happy when he goes into/ comes out of school. He struggles a little with the initial transition in but he's so excited every morning walking to school.

I brought a communication book to school today to help communication between school and home, and to help us talk about what he has done at school today. They've asked to pause us using it until our meeting on Monday which is a shame.

@Coco9319 if it gives you any hope, even the tiniest bit of hope…
DS14 wasnt out of nappies till 5 1/2 years old (year one) He didn’t speak till he was seven.
He is now undertaking his GCSEs in Science & Maths with expected good grades in a SEN school. He has a boyfriend and lots of good friends.
You my lovely are where I was, but I promise you it gets so much better.

@Coco9319 you sound like an amazing mum with an amazing son but man this shit is hard.

I remember when my son was starting school and many occasions over the years where his differences between him and his peers became more apparent but there has always been other times of development, areas of real strength and lots of really great funny times.

I find that you have to fully mourn the bad stuff, these days and moments like yours today because if you don’t you won’t leave room for the good stuff too.

It is really hard when it hits you but you will get through this.

I'm sorry your LA is so awful. Just to reassure you, perhaps, but the special schools are always 'full'. We're always told there are x hundreds of children on the waiting list. That doesn't mean they haven't found spaces for the children we've had in our mainstream school who have needed them, within 6 months to a year.

In case it is relevant in future (it most likely will be), the timescales of the normal complaints process and going to the LGO means it isn’t a suitable remedy. It takes far too long. That is why a pre-action letter/JR proceedings, are considered the better way to go.

For non-wholly independent schools, LAs can’t refuse to name parental preference in an EHCP because the school is ‘full’. Being full is not defined in law, and for non-wholly independent schools, on its own being ‘full’ is not enough of a reason to refuse to name parental preference. The LA has to prove the school is so full admitting DC is incompatible with the efficient education of others or use of resources. The bar for this is high. Far higher than LAs and many schoolsadmit. It has to be something tangible and specific and is more than an “adverse effect”, “impact on” or “prejudicial to”. For non-wholly independent schools the LA can, and must, name the school regardless of the school’s objections unless they can prove one of the lawful exceptions. And if the LA refuses and parents appeal, SENDIST certainly will.

Sounds like you’re doing everything you can re the EHCP and I completely understand how soul destroying the process is.
I hope I don’t sound glib saying this but I would suggest you use your CAMHS contacts to access some family therapy for you and your husband or maybe just you if he’s not open to it.
We’ve done this in a similar situation and I’ve actually found it very helpful. We were offered it through CAMHS. (I’d have rather had the therapy that dd actually needs herself but we were at the point where we’d take any crumbs offered!)
I’d also recommend seeking out other parents with similar children. It’s much nicer to be able to share and celebrate milestones with people who get it.
He sounds lovely and you sound very switched on so I’m sure he’ll be grand in his own way whatever the future brings.

I'm so sorry your route to getting an EHCP has been so long and terrible.
My non-verbal, medical needs, physical issues 4yr old has just started mainstream reception with a 1:1. It's exhausting keeping up with all his admin (we both work as well) and constantly fighting for him to access the most simple things.

Have you had genetic testing done? DS doesn't really fit into any expected conditions but it turned out he has a very rare genetic condition. Just having a label opened many doors to us for support. It shouldn't be like that but sadly sometimes it is.