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.

your child’s current school should be able to help you with applying for an EHCP. Have your son got a diagnosis yet ? Keep pushing as much as you can. From what you’ve said it sounds like he would benefit from a SEN school. You can also go to your GP they might be able to make some sort of referral. You could also contact CAMHS. Please don’t feel alone and be easy on yourself your doing the best you can to advocate for your little boy.

Oh OP, I think it’s completely normal and understandable to feel overwhelmed and despondent about this. I sure did!

I cried many a time when my son was in mainstream. Everyone else having photos home on photo day, nativities he would never be part of, eating his lunch alone in the classroom…. it’s so hard.

Have you had a referral for possible ASD diagnosis?

My DS wasn’t verbal at 4 and we went through the EHCP process, it was exhausting and took 2 years to get him into the specialist school we wanted for him but you just have to keep going.

If the council are delaying I would try and get some support going otherwise. I contacted our MP, local SEN groups, every relevant head of dept at the council. It was exhausting and shouldn’t have to happen but I was relentless with it.

Have you applied for DLA? I would advise doing this. Everything has cost a lot for our DS as any care has to be 121.

If possible through DLA or if you can find it, I would get some private SALT. It made the world of difference getting some communication in place for our son.

Sending so much strength and love. You’re doing an amazing job and it sure as hell ain’t easy!

If he’s only 4 does he need to be at school or could he be deferred?

A 90 week wait? That’s absolutely terrible. Where are you?

One good thing is that your school can get him on their SEN register independently of that, and should be able to put some support in place without it. But if they can help at all to push that assessment sooner, they should. It’s far too long. Ours was 6 weeks to make a decision whether to assess or not based on the form school submitted, and then maybe 8 weeks from there to the assessment itself.

There’s a legal obligation for them to take a max of 20 weeks. I don’t know how you’d enforce it, but it really shouldn’t be taking that long!

Op, I would recommend you reach out to other SEND parents, ask senco or contact your LA (look SEND carers) you will benefit from being around other parents who get this.

get that EHCP - get school onside as they need to give input as to his challenges, as will SLT, push for the EHCNA (needs assessment) asap. Search local offer on LA website.

he may benefit from staying in mainstream or you may find a specialist school better for him.

I know the feeling of realising the needs are so high, being around other SEND parents will help you feel less alone with it.

He sounds very like my little girl and she's just started at a specialist school. Keep fighting. It's a lot of responsibility to get him what he needs but it's in the school's interest to try and help. You aren't alone

I've said in my post that I applied for an EHCP in September 2024 but there is a 90 week wait in my area. All SEN schools are also full. I've been through all stages of the LAs complaint process and have been awarded compensation by the LGSCO. There are no other stages of complaint, I am starting legal action against the council.

He's under a paediatrician who diagnosed his with Global Developmental Delay, and I work for CAMHS so know that in my area, he is too young to access anything they offer. He's been assessed for Autism - its honestly unclear whether that it what is going on, but I'm not concerned as he will remain under the paediatrician for regular reviews of his development.

I understand and appreciate your advice but I am absolutely sick of advocating for my son, having done it from day one. I know that we don't get to stop, but I've kicked and shouted and complained but nothing ever happens. I wish someone other than my husband, family and me cared enough to advocate for him.

He really enjoys school. I couldn't deny him it by deferring. I also work full time.

Hi.

My daughter is an adult now but I remember how hard it was at the beginning.

You should apply for an ehc yourself. Don't wait for school. You may need some help. I would recommend you contact SOS!SEN. But anyway, all you have to do is write to the LA and request an ehc assessment. SOS!Sen probably have info on how to do this on their website. Or try ipsea.

The la might well turn you down but then you are in the system - you can have mediation or go to appeal.

Local authorities cannot hang about once the clock starts ticking and that happens the minute you put your request

Thank you!

But the situation regarding EHCPs is dire. They agreed to assess in September 2024 - I applied myself with support from his nursery. There is no accountability - he didn't move places on the waiting list between April and August 2025.

Absolutely shocking OP.

Have you tried your MP?

If they have compensated you for the delay, could this be used towards additional support? Like SALT?

All SEN school were “full” here according to the LA but he got a place within a few months….

I honestly do know it’s exhausting but you’re doing an amazing job advocating for your son.

I also work full time and I do get the additional layer of exhaustion trying to function in both work and home. I tried reducing my hours but it just meant more pay and the same amount of work, so I went back to full time too.

I suppose I don't know what a private SALT would do for him that the NHS SALT doesn't do, and he's just changed from pre-school SALT to EYFS SALT.

My daughter is August born, so would be just 4 when starting, she has no additional needs but we’re going to defer her starting until she’s 5.

I know you said you work full time but wasn’t he at nursery or some other childcare provision before starting school? Could he not go back to that? Obviously if he’s 5 in October or whatever then fair enough, but if he’s a summer born baby I’d be really considering pulling him out and re-starting him next year when he’s 5. A year can make a big difference when they’re this age and he may be able to cope that bit better if he’s that bit older. I have no idea if you can keep the ball rolling in terms of EHCP etc if he wasn’t there.

Things to ask in your school meeting-

Has the school applied for high needs funding? They will get it while the EHCP is being processed. It will cover some 121 support and you should apply for DLA too.

Do they use the developmental journal to track his progress? It has smaller, incremental
steps to help SEN kids

Have they discussed with you how you all communicate with your son? Something like makaton or pecs ?

It’s a bloody grind, relentless. I feel for you. You’re doing you’re very best.

Private SALT was a world apart from NHS in my experience, if you find a good one.

My son has a comms device now, there are many different forms either low or high tech that are near impossible to get access to via the NHS without waiting the better part of a decade.

NHS SALT told me my son wasn’t competent enough for a comms device and at best she would consider putting him on a year wait list for PECs….

He can now create full sentences via the device and he couldn’t read or write demonstrably before having it.

To give context he was 4 when we went private for SALT and he’s only 6 now.

He is now partially verbal as the structure of the software can help build the pattern needed for speech. There are many, many different types of software so a specialist is important.

He had never been able to ask for a drink before we modelled using this form of communication and two days ago he asked for squash with a straw please. He cannot converse as most do but he is beginning to be able to ask for his needs to be met.

Being able to communicate really lessened his frustration and very physical reactions.

I genuinely never imagined we would get to this point.

My ds1 couldn’t speak in reception . (Was the size of a 7 year old which made it even worse). Went to speech and language and put in the “special class”.

He grew out of it .
(Looking back I think he used to bang his head a lot and not speak because he was exposed to DV with me and his dad which I think caused this delay in him.

He’s now second year at uni studying medicine.

I need to get some sleep OP but do feel free to message if you want details of the SALT etc. Happy to share the cost and things if it helps.

Have you got a local support group? I found other SEN parents invaluable - other people who really understood and encouraged me to fight for my child and enjoy the progress he is making independently of other kids.

Don’t give up yet - there’s still so much joy to be had with your boy. Sending hugs.

Also I wanted to add that my child was speaking one-two word sentences at 4. Mostly one word tbh, and around 6y he really accelerated and though he is very different to his peers he’s now he’s verbal and very opinionated. You’ll be surprised at the leaps you child will take in their own time, and they will be much sweeter.

My ds has asd. At five he was classed as non verbal and still in nappies. He had a Sen plan in place at school and EHCP was applied for it took 8 months to get it. The LA funded 15 hours of 1:1 but the school did give more. He was under NHS SALT.
over the next few years he started talking, first repeating, then gradually asking questions/giving answers. He’s ten now and talks loads (although mostly about things that interest him) he was fully toilet trained by 7.
we got the EHCP in year 1, they continuously increased the funding he now gets 9-12 and 1-3 every day.
He’s bright working above age related in most areas. He’s still behind with social/emotional.
No idea what adulthood will look like but he has come on loads since he started school.

Try not to think about the future or compare.

I would consider home educating him until he's slightly more verbal and then applying for a specialist provision school. I don't think mainstream is going to be beneficial to him by your description, unless you need it for the childcare which is completely understandable to use if so.
But if you can afford it he'd likely benefit more from being at home with your 1-1 attention at his developmental stage, and then going into a carefully chosen school able to meet his needs.

Your son sounds similar to mine. He has autism in all areas of development, global developmental delay in all areas of development and severe speech delay. He is 4 but development of a 2 year old. It was a battle but I fought the council for a deferral for a year. So he’s still at nursery, starting school next year instead in reception.

I can tell you I know it’s so easy to hope and hope that he will catch up in his own time, but please don’t let wait lists put you off getting support because he will need it. Go to your GP explain that he has a delay in two or more areas of development. This will trigger a neurological appointment which will take your observations, test for genetic disorders and observe him. This was the easiest diagnosis we got. Meet with your SENCO at school ask them to look at his milestones and to make a referral to Portage, this is a service that assesses milestones through play. Get as much evidence as you possibly can for his EHCP referral which legally should be no more than 20 weeks from you putting in the form to you getting an outcome.

remember he doesn’t legally need to be at school until the September after his 5th birthday- if it’s not working take him out, speak to the council about it. If they refuse you can opt to homeschool him then get him back to his old nursery.

Sadly absolutely everything is a battle, it’s exhausting but don’t give in, this is your child they have to do better he deserves better and you aren’t getting the services you deserve x wish you luck x

He could also repeat reception, on your Wednesday meeting ask for this.