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.

CAMHs for a 4 yo ? This is community peadiatrics bread and butter, he has a diagnosis of GDD. It does sound like he might do better in another provision.

He was born extremely prematurely, and his delays are most likely associated with this, but he did also have severe sleep apnoea and permanent glue ear until April 2024.

I'm so incredibly proud of how he has powered through adversity. He truly does tackle everything head on. With the right help, he will take on whatever comes his way with enthusiasm.

That's such a beautiful thing to say. I can tell you're so full of love for your little one.

My son doesn't have a (suspected or otherwise) mental illness, which is a prerequisite for CAMHS in my area. We offer Systemic Family Therapy for children who are eligible.

He sounds perfect just as he is, Op. It’s the world that has gone crazy. Are you able to keep him home for a bit longer? Let him be where he thrives the most.

I would leave him in school especially as if they are going to organise 1 to 1 for him. In our council area they don’t really have special school places until a child turns 7. Everyone goes to mainstream. But the school will fit hard for him to get the help he needs.

You have the heart of a good mother. Just keep trying to help him and the results will come with time.

OP I can recommend our EP - he covered a wide range of counties and he wrote a very insightful EP report for us for tribunal and he was available for assessment with a few months notice. We didn’t get to tribunal in the end but he also offered a lot of advice on the direction he thought would be best for our child - at the time we had been questioning whether to push for a specialist school or to wait and see and we decided on his advice to push. But I am also glad he got a few years in a very kind and supportive environment in mainstream with a fulltime 1:1 - I think it was good for him to have peers who could model language which was his main difficulty.

I remember when I was told my four year old son was delayed. I just felt sick with worry. It turned out that he had a severe hearing loss. He picked up visual clues and possibly taught himself some rudimentary form of lipreading. Even when his hearing was corrected, he was far behind other children in his class. I remember reading some referral his teacher had written about him and just sobbing. He was slow to read and struggled with maths and his handwriting was atrocious. He turned out to have ADHD. He got a university degree and is doing some post-graduate study for a vocational qualification. We had a huge struggle to get him there. Medication, loads of occupational therapy for motor skills - he couldn't cross the midline - and lots and lots of coaching through high school subjects. His older brother was effortlessly bright and academic but with enough push my younger son achieved far far more than his primary teachers would have believed possible. I wish you luck.

OP had said, several times, that he's enjoying school, and deferring is not an option.

DS was also premature. Your last paragraph is so similar to how we feel about him. It's just getting that right help in the first place which is such a battle. But watching him try so hard and make his tiny inches of progress at a time has been the best.

I really hope getting that EHCP happens asap for you all.

Your dh seems in denial, you are looking at the severity and he is glossing over the reality. He is provably finding it very hard to deal with. Have you considered counselling? Somewhere to talk through your feelings in privacy.

Just be aware that when LA’s tell you schools are full this is not exactly the truth. All schools special or otherwise can admit above their official numbers unless they can prove they meet the legal test of it being incompatible with the education of the other children already there. This doesn’t mean it only has to have a slight impact but a significant impact - it’s hard for them to prove but they will often claim they are “full”. Making it clear you know this to the LA means they should realise they can’t fob you off. Arming yourself with info is the key; my LA were most surprised when I got up there funding banding criteria they have never shared with me in a meeting and started questioning their evidence gathering to back their own funding policy and within two hours they had agreed to increase the funding - despite initially telling me they didn’t make funding decisions they could only be made by panel which not only they sit on but schools do as well etc but it is completely exhausting and especially when doing this alongside your child starting school and having the heartbreak of seeing their differences to their peers and the constant worry about what the future holds.

How are the school managing his needs? Hopefully the meeting on Monday will result in you getting more support.

I don't have advice on process but can I just say that your son is so lucky to have you as parents. Your description of him is wonderful and he seems so loved and supported, so please give yourself some grace. It sounds like you and your DH need support to cope, therapy or parents group in a similar situation? It is relentless dealing with what you are dealing with and you need care too. It seems like your little boy is doing as best as it can be at school, and even children without delay also struggle some days, lash out some days, and need support for some aspects of school life. Your son's school may want to talk to you about techniques and such to put in place at school and at home, now that they've had him for a few weeks and k ow him better. I wouldn't think about something too negative, specially if it's the 1st time they request a meeting like that with you and if they postponed it (doesn't sound urgent or anything).
Sending hugs!

Well, he can be deregistered if not deferred… These are just my thoughts and how I see it, after reading the op.
Schools demand a lot of very young children. Op is in a position to fight for him but it must be draining for every one. At home he’s not compared to other children and he can just be his wonderful self and thrive in a setting that fully supports him, somewhere where he’s not delayed and just a child learning in his own time.

The worst thing a parent looking for an ehc can do is take a child out of school. In theory you can get one but in practice it's difficult. He has to be observed to fail in school, sadly, to have any chance. And if his difficulties are profound, he isn't going to fare any better next year. It is better to stay, get assessed, then onto an appropriate setting or more in school support.

I'm not deferring, deregistering or home schooling him. If I keep him at home now whilst he's (within his ability) establishing his understanding of the routine, rules and expectations at school, it will be so much harder in the future to get him back in. Its a short term solution which doesnt focus on my sons long term benefit, and doesnt even really solve anything.

I might be taking completely the wrong handle on this - but, your son hasn’t changed since he’s gone to school - he’s still the same fabulous little boy he was,only now he’s running in a race he can’t win, to be fair he shouldn’t even be a competitor but he loves school and whilst his targets differ from his peers - they are targets !!

He’s going to be ok, school are supporting him, he has awesome parents and it’s only comparing him to his peers that makes it hard to bear.

so try not to focus on what he should be doing but on what he can do and what is his next mini target - we don’t know what the future holds for any of our children - we can hope and aspire but ultimately it’s a wait and see game.

Things could be so much worse, for him to have had all the specialist support and a kind of diagnosis is testament to your tenacity and strength to fight and advocate for him - you’re allowed to stop the fight, take a breath and be in the moment and just nurture your son.

It will be fine, there’s a place for everyone in this world.

When you have your meeting at school, it would also be helpful to ask whether there is a local specialist school that offers outreach; when I was a SENCo, our local one was brilliant, letting teachers visit them to observe, sharing resources and observing our child who needed specialist, offering advice and helping us to tailor the curriculum and space to her needs.

If you are worried about them trying to push a part-time timetable onto you (what my school used to push for) it may be worth reading up on the legalities of this before you go.

Also, I'm not sure when your son is 5 (and he may be able to access at 4) but in my borough we had various alternative provision that we could refer a child to, such as forest school, and we had a number of pupils attend a day or two a week, combined with school the rest of the week.

My son has complex needs and he is 9 now. When you eventually get the right school and support in place, it does get easier 🙂

Wondering if you are in Surrey as I know they have a terrible reputation for EHCPs. If so, have a look at Challengers and Yorda for weekends too.

I agree with keeping him in school. The majority of primary schools are very nurturing and inclusive and it will be good for him to be a part of a community.
I didn’t mean that he needed camhs btw (although in our area it’s the gateway to certain assessments that may or may not be useful in the future). Just that in your professional capacity you may get some recommendations or maybe even a bit of queue jumping to access some therapy.

Hi @Coco9319, just a handhold here. The title of your post resonated with me so much. When you said the gap between your son and his peers is widening and then the fact he is non verbal, it could almost be my daughter you are talking about.

My little girl is almost 4 but she has just been given a diagnosis of Global Developmental Delay for the fact that she is severely delayed in language but also has some delays cognitively and was late to meet her gross motor milestones. She is not yet at school and we would dearly love to send her to our village primary, where our other children are/were but we are currently viewing specialist schools in our area. Realistically I cannot see her being anywhere near ready to begin to sit and learn with her peers, however play-based Reception may be. We have only just begun the EHCP process.

This is so hard. It’s so hard to know what the right thing to do is. I worry all the time about my daughter’s future and whether she will ever speak or live an independent life. I hold onto the positives - she is where she should be for social communication as well as for self-care. She is potty trained day and night.

Hoping for the best for your son x

Just by way of an update as the thread was so helpful to me.

My son was assessed by an EP not long after I posted this. Then quite unceremoniously earlier this week the draft EHCP was sent into my email inbox. It's a decent EHCP but we and the school feel is clearly over and above what any mainstream school are able to provide, so my husband and I and consulting with special schools and declining to name his current mainstream on the EHCP. It's tough but I feel more direction now with the schooling.

My son loves going to school. He doesn't experience it in the same way as other children but he's excited to go to school and happy when he comes home. We hear occasional stories from other parents whose children have said "he gave me a cuddle when I was sad today" and "he played chase with me today" which are rare but important moments to us.

I am still struggling to cope - obviously the grief can be difficult at times but I suppose what i didn't expect was to feel shame and guilt. I often get stuck on wondering what i could have done differently, blaming myself for my sons delays. But I have great support at home and good friends to lean on when things are tough 💖

Go through the draft very carefully. It is very rare for an initial draft to be watertight. Sadly, it isn’t uncommon for parents to not realise the EHCP has woolly and vague wording until their DC doesn’t get the support they need and they try to enforce the EHCP and can’t.

Just so you are aware, even if you respond to the LA stating your preference isn’t mainstream, it doesn’t necessarily mean the LA won’t name MS anyway (the LA doesn’t need your agreement) and force you to appeal.

Have you been in contact with your SENDIAS service? This appears to be yours OP https://www.buckinghamshire.gov.uk/schools-and-learning/bucks-sendias-service/contact-sendias/ but if it isn't you can find yours at https://councilfordisabledchildren.org.uk/about-us-0/networks/information-advice-and-support-services-network/find-your-local-ias-service

Although not your area, some useful information on this SENDIAS website for Devon https://devonias.org.uk/