Meet the Other Phone. Protection built in.

Meet the Other Phone.
Protection built in.

Buy now

Please or to access all these features

AIBU?

Share your dilemmas and get honest opinions from other Mumsnetters.

10yo DS permanently excluded (long post)

130 replies

Tiredmumof32014 · 14/05/2025 20:34

Not sure what I’m looking for really – maybe just a place to let it out. DS (10) was permanently excluded from his private primary 2 weeks ago. He’s in Year 5. I’m absolutely broken over it all, been carrying the weight alone for years and just needed somewhere to write it all down.

He’s my youngest. My older two are adults now, so it’s just me and him at home. I left his dad when DS was 6 months old due to DV — we’ve had no contact since. No family around to help either, it’s just been me.

Baby – Toddler Year

• From day one he was hard work. Screamed constantly, barely slept, hated being held one minute then wouldn’t let go of me the next.

• Wouldn’t tolerate the pram or car seat, always squirming or screaming.

• Very sensitive to noises and textures — would cover his ears at the sound of hoover, hairdryer, hand dryer etc. Hated tags in clothes, refused to wear socks properly.

• Language was a bit delayed but then caught up fast. Seemed bright in some ways — could remember facts and songs — but would have wild tantrums over the smallest things.

• Very aggressive when overwhelmed — biting, throwing things, screaming.

• Toilet training was a nightmare. Didn’t come out of nappies properly until nearly 5. Still had daily accidents at 6. Still having them now, at 10.

Reception – Year 2 (Mainstream state school)

• It was clear early on that school wasn’t the right fit.

• Would get overwhelmed easily — especially during assemblies, transitions, PE.

• Started masking a lot at school but would explode at home — I’m talking full-blown meltdowns every day after pickup.

• Would lash out at me, throw furniture, scream for hours. Couldn’t handle any change — if his shoes were wet or the wrong dinner was made, the day was over.

• Still wetting and soiling at home and wouldn’t wipe properly. We had to start using pull-ups again some days.

• Referred to CAMHS at 7 but we were discharged after one phone appointment because he “wasn’t showing signs of ASD”. GP said keep a diary.

• Applied for EHCP twice, both refused — school said he “managed fine in class” which was just him masking.

Year 3 – 4 (Still in mainstream)

• Things got worse the older he got.

• Started refusing to go in some mornings. Would cry, cling to me, sometimes hide in cupboards at school.

• Increasingly aggressive at home. Started hitting himself during meltdowns, screaming that he was “stupid” or “no good”.

• No friendships — other kids found him odd or too intense. He’d either talk nonstop about the Titanic or sit alone.

• I pushed for specialist provision but LA said he wouldn’t meet criteria without an EHCP. Specialist schools I contacted directly also said the same — lovely on the phone but all said “needs not complex enough for our setting”.

• By end of Year 4 school was saying they couldn’t support him long-term.

Year 5 (Private school – started Sept 24)

• Took out a loan, used savings, just wanted to give him a chance. They sold themselves as nurturing and small class sizes.

• He lasted a week before the issues started.

• Would sit under the desk, rock back and forth, cover his ears

• Had daily meltdowns — over noise, group work, being asked to write.

• Would throw books, shout, once pulled a display board off the wall.

• Constant issues around toileting — wet himself at school more than once, soiled a few times, refused to wipe and left mess in the toilets.

• They kept sending him home — not suspensions, just constant calls asking me to pick him up.

• By January they started saying “not the right environment for him” and started keeping him out of assemblies and PE “for his own good”.

• Last straw was 2 weeks ago — a child made a comment about him smelling. DS lost it. He threw a chair, hit the boy in the face, then locked himself in the toilet and smeared poo all over the walls.

• I got the call and was asked to collect him. Two days later the exclusion letter came. Permanent.

Home life now

• I’m honestly on my knees.

• His toileting has fully regressed. He wets himself daily and soils multiple times a week. Doesn’t wipe, sometimes hides dirty underwear, I find it in corners of the room or stuffed in drawers.

• He strips off when overwhelmed — today we were on the bus, he had a meltdown, full screaming and crying, then stripped all his clothes off in the middle of the aisle. I had to get him off the bus half-naked while people stared.

• Still co-sleeps with me. Wakes 3-4 times a night, screams if I’m not there.

• Eats with his hands, refuses cutlery.

• Will spend hours pacing and repeating things from YouTube or going on and on about disasters (Titanic, plane crashes etc).

• Can’t tolerate any changes — I bought different pasta last week and he had a 40-minute meltdown.

• Hates haircuts, nail clipping, even brushing teeth is a battle.

• Hits himself in the face when overwhelmed. Bangs head on walls or bites his hands.

• Has no social life — can’t cope with parties, groups, or even playdates. Doesn’t have friends.

• Some days he’s so lovely — cuddly, funny, clever with facts — but the next minute he’s screaming and throwing everything across the room.

• No diagnosis still. We’ve had so many “he’s just sensitive” or “you’re doing too much for him” comments from professionals it makes me want to scream.

• Applied for EHCP again with legal support this time. Still waiting. Been out of school 2 weeks and not a peep from the LA. No idea what we’re supposed to do next.

I don’t know where we go from here. I know he needs specialist support but no one’s taking us seriously. I’ve kept him going for 10 years on nothing but instinct and love but I’m exhausted. He’s not a naughty child. He’s a little boy in crisis and I feel like no one cares until it’s too late.

Thanks if you read all this. Just didn’t know where else to put it.

OP posts:
StepAwayFromGoogling · 15/05/2025 02:34

OP, so much good advice from other posters but I just wanted to send an enormous hug. Your son is clearly autistic and having an autistic child in this level of distress is so, so tough. I am currently sleeping - or not sleeping given it's 2:30am - worrying about my autistic DD, who is also not in education, sleeping soundly beside me. I hear you, I see you and you're not alone. Please keep venting here. So many of us in the same situation and can support.

Howtohelpfriend · 15/05/2025 02:37

You sound like a wonderful mum. Other posters have offered advice and suggestions about where to get support. I hope you get to speak to the GP and get your son the help he so clearly needs.

Iizzyb · 15/05/2025 05:00

this sounds so difficult. For the toileting you need some help. The GP needs to refer you to the continence service and give you proper medical support in the meantime. The soiling could well be constipation but GPs are notoriously rubbish at diagnosing and treating but brilliant at talking nonsense with confidence in my experience.

can you try contacting ERIC charity got some help in the meantime too

and seconding the need for an autism assessment and support but surely in the meantime the local authority need to provide a school place

good luck xx

PinkCentipede · 15/05/2025 05:24

@Tiredmumof32014

I’d do the following.

  1. contact GP. Essential. You need professional diagnosis, letters. I don’t think you’ll get DLA until you have professional letters/paperwork/diagnosis to back it up.
  2. contact here : https://askusnotts.org.uk
  3. find out about occupational therapy
  4. here are template letters on IPSEA. Very useful. https://www.ipsea.org.uk/template-letters Reassessment letter here : https://www.ipsea.org.uk/Handlers/Download.ashx?IDMF=22971e3e-becd-4470-904b-3c765f7dae5f Again I think reassessment will want to see evidence from doctor/paediatrician.
  5. IPSEA letters are addressed to Director of Children’s Services. Here is the email of this person in your area.
    [email protected]

Home - Ask Us Nottinghamshire

We support children and young people with special education needs or disabilities (SEND) and their parents in Nottingham and Nottinghamshire.

https://askusnotts.org.uk

Concretejungle1 · 15/05/2025 05:27

So sorry you both have been failed. Your child clearly was showing signs of autism so how cahms can say there are no signs are beyond me! Sad
can you ring the gp and show them all these symptoms and say he has now been kicked to see if they can do anything?

arcticpandas · 15/05/2025 05:33

You must be exhausted 💗. It does sound like ASD, my son had 1:1 TA all primary, without it he would have been lost. He needs someone to reassure him constantly which it sounds like your DS does as well. My son couldn't cope with secondary though so he went into SEN schooling. He's 15 now but the worst years were 12-14 when puberty kicked in and he got really violent. You absolutely need help set up for him and you before that!

redbirdblackbird · 15/05/2025 06:04

Hi, as others have said, I would look into a private ASD assessment as soon as possible. I would also commission a full sensory needs assessment through an OT. I did this for my son, I think it was around £700. He’s displaying huge sensory needs and needs to be regulated.
the first step is to let him
recover and become more regulated. Try not to panic too much about education at this time. He is in so much distress he won’t be ready to learn anyway. Get advice from
professionals, keep going with the EHCNA and look into local ASD support groups. Where in the country are you based? Just thinking we might be able to help with recommendations.
also look into SENDIASS, every local authority has to have an independent advisory service for parents of children with SEND

Astrochicken · 15/05/2025 06:22

Contact your local parent carer forum https://nottspcf.org and SENDIASS Nottinghamshire https://askusnotts.org.uk both should be able to offer advice and support specific to your area

Notts Parent Carer Forum

https://nottspcf.org

Secretsquirels · 15/05/2025 06:34

Just to come back to you about dla.

You don’t need a diagnosis to claim and I know quite a few people with autistic kids who claimed whilst waiting for diagnosis.

The one silver lining of the permanent exclusion at such a young age is that it will be very clear evidence.

On the DLA form it will ask loads of questions about how long you spend doing various things to support him - answer these questions for what he’s like on a bad day. It will ask for supplementary evidence - attach anything you’ve got from the first school and get the second school to write a supporting statement. Also get someone who knows him well - your ex would be a good choice - to write about him outside school.

If you’re tight for money for a private diagnosis then have a look and find the cheapest provider that you can for an autism only diagnosis and do that. It will increase your chances of an ehcp and will give you something to base special school applications on. Then in a few years when you’re in a better position do a more expensive combined assessment looking at adhd, pda etc as well.

BusMumsHoliday · 15/05/2025 06:34

I'm so sorry you've had such poor advice and lack of support. That his mainstream primary said they couldn't support but didn't advise you to appeal the EHCP is appalling.

Now he is out of school, contact your local authority. They should step in to provide alternative education if he is too unwell to be in school, which it sounds like he is. https://www.ipsea.org.uk/getting-temporary-education-put-in-place

I would speak to the GP about him being in crisis. Contact social services and ask for an assessment. Look up special needs charities and groups in your area: many don't require a diagnosis and you'll meet people who can give you advice about schools. Start assuming that he has a disability or neurodivergence and parent from that position. He needs time to recover from what sounds like some quite traumatic experiences in school.

Getting temporary education put in place

The duty to provide alternative education If your child is of compulsory school age but is not receiving education because: illness is preventing them from being able to attend school they have been permanently excluded from school, or for any other re...

https://www.ipsea.org.uk/getting-temporary-education-put-in-place

ThreeLocusts · 15/05/2025 06:38

Sympathy and solidarity, OP. I too think DS sounds autistic and yes, pay for a private assessment or else keep bothering GPs until they help you with camhs.

It's disgraceful that they sent you away first time round, but there's a lot of cynical gatekeeping for services. I couldn't get my daughter diagnosed until she was 16 and on the edge of psychosis.

The good news is that she finally got appropriate help and is doing much better. There will be ways to help your child, and you will find them. I'm sorry that the institutions are making it so hard.

NoHardSelling · 15/05/2025 06:39

You have been an amazing mum. You have been failed by the system. I’m so sorry.X

CleverButScatty · 15/05/2025 06:52

Sunnyevenings · 15/05/2025 00:52

Firstly, I do not have direct experience. However I am aware of a boy who sounds very similar to your son. He is autistic and his family eventually got him a place in a class which catered for kids with autism.

As he grew older, he became physically stronger, often being violent at home. His parents, by now were getting older and were not physically able to cope. After around exhausting battle, his parents had him placed in a residential house where he lives to this day.

What a helpful post.
OP your lovely son is not going to end up in residential care.
He might spend quite a bit of time out of school over the next 12 months whilst you get a diagnosis, EHCP in place and him into a suitable setting. (The diagnosis is massive for securing support, if you can beg, borrow or steal the money I would-i paid £2200 for a very good company, DM me if you want me to send you the details).

Unfortunately when you are a parent of kids with SEND you have to have the skin of a rhinoceros because you will come across a lot of this idiotic nonsense... From 'just be stricter', 'stop giving him junk food' to the ridiculous like the above.

There is a SEND board on Mumsnet, it still gets a high level of traffic so quick responses etc, but generally everyone on there has experience of SEND and is supportive and has a bit more knowledgeable.

I hope this poster hasn't upset you.

CleverButScatty · 15/05/2025 06:56

redbirdblackbird · 15/05/2025 06:04

Hi, as others have said, I would look into a private ASD assessment as soon as possible. I would also commission a full sensory needs assessment through an OT. I did this for my son, I think it was around £700. He’s displaying huge sensory needs and needs to be regulated.
the first step is to let him
recover and become more regulated. Try not to panic too much about education at this time. He is in so much distress he won’t be ready to learn anyway. Get advice from
professionals, keep going with the EHCNA and look into local ASD support groups. Where in the country are you based? Just thinking we might be able to help with recommendations.
also look into SENDIASS, every local authority has to have an independent advisory service for parents of children with SEND

If you can get the EHCP, the educational psychologist will almost certainly recommend a sensory assessment and this will go in 'section F provision' which is what the local authority have to find.

So prioritise the autism diagnosis if you can.

itsgettingweird · 15/05/2025 07:00

You’re absolutely right to recognise he’s a boy in crisis and I’d make a GP apt asap.

Tell them he has self injurious behaviours and cannot even manage daily personal care as he’s so distressed.

Od go as far as saying you cannot leave until they’ve made a referral and you want to see and read the referral letter before it’s sent to make sure it states properly how overwhelmed your da is and how bad his MH is.

I'm so sorry you and your boy have been let down by the people who are meant to support you.

I would also go as far as enrolling him in a school so when he does attend and can’t manage or can’t attend due to anxiety you have a school to support your EHCP request.

redbirdblackbird · 15/05/2025 07:03

CleverButScatty · 15/05/2025 06:56

If you can get the EHCP, the educational psychologist will almost certainly recommend a sensory assessment and this will go in 'section F provision' which is what the local authority have to find.

So prioritise the autism diagnosis if you can.

It’s just a very long wait, and the LA I am in no longer authorise full sensory assessments

MoreChocPls · 15/05/2025 07:04

Get an urgent GP appointment and don’t leave until they take this seriously. Don’t get fobbed off.

CleverButScatty · 15/05/2025 07:09

redbirdblackbird · 15/05/2025 07:03

It’s just a very long wait, and the LA I am in no longer authorise full sensory assessments

Appeal it.

snughugs · 15/05/2025 07:10

i don’t know how to help but wanted to give my support. I remember when my son was 5 and started school he clearly had serious issues and the Headteacher refused to refer him to CAMHS and said he was of low intelligence. I got a referral through my GP and he was diagnosed with severe ADHD at 5 as a cut and shut case. I tried with the school but felt disrespected. Moved schools, got medication and now 18 he’s a dream and got good exam results and off to university.

Sometimes you just have to ignore teachers and fight and demand proper support. The vast majority of teachers and the school have been nice and kind but they just don’t get it. Now that my son is academically able they make no concessions for him. Teachers don’t have a clue although I’ve been both surprised and encouraged by the support at his university (they get it).

Please fight and don’t give up, complain and complain. Sending you strength and Hope. You need more support I would say contact Social Services but they don’t offer support but please write to a local autism charity and get direction.

Sorry you have had to go through this. There’s not enough support out there.

Ruelzdontapplyhere · 15/05/2025 07:24

Sorry you going threw this. Alot of what you have said is screaming asd too me.
Soiling
Smearing
Undressing when destressed
Biting himself.
It makes me sad that your ds is being let down by the system.

Starlight7080 · 15/05/2025 07:27

How has he not had a diagnosis. That's ridiculous. You have been majorly failed by anyone you have taken him to see.
Is he on any waiting lists to be seen?
You sound like you are doing a great job. Even though it may not feel like it.

Whatafustercluck · 15/05/2025 07:32

NotSayingImBatman · 14/05/2025 20:51

You need to funnel the money that would’ve gone on school fees into a private ASD assessment. Your son’s day to day life sounds exactly like my own child — also 10 — and he has AuDHD with a PDA profile. I don’t know what area you’re in, but where I am, the CAMHS waiting list is 4-5 years, even if your GP agrees to refer you.

Ordinarily, I’d suggest looking at Right to Choose assessments, but you’d still need your on board and it sounds like that might be a struggle. It’s clear as day to anyone reading your post that your child is autistic, but it’s almost impossible to even get on the waiting list if he masks. I don’t suppose the private school would be inclined to help with referrals etc if you’re no longer paying them.

You’re doing an amazing job. Having a child with SEN is one battle after another, but you’ll get there.

This. School isn't working for him, use money saved on school fees for proper support - privately. We paid for a private specialist to help dd (at the time she was just 6). See it as a stop gap until you can get him back to school once he's regulated. The regression is likely due to having so much school-based anxiety. And if the ehcp is rejected, appeal to Tribunal - the legal threshold for having a needs assessment is actually pretty low and most appeals are accepted.

You're in the eye of the storm right now, your own mental health will be severely impacted meaning that you're unable to respond to your ds as effectively as you would normally. This isn't a criticism but a statement if fact. I've been there. Try to take care of yourself first and foremost. Do you have any support so you can have some time to yourself at all?

I'm so sorry you're going through this. Your ds is being failed, but not by you. Please remember that you're doing the best job possible in really awful circumstances. Try the SEN boards here for more practical advice from people who have been there.

Whatafustercluck · 15/05/2025 07:44

CleverButScatty · 15/05/2025 06:52

What a helpful post.
OP your lovely son is not going to end up in residential care.
He might spend quite a bit of time out of school over the next 12 months whilst you get a diagnosis, EHCP in place and him into a suitable setting. (The diagnosis is massive for securing support, if you can beg, borrow or steal the money I would-i paid £2200 for a very good company, DM me if you want me to send you the details).

Unfortunately when you are a parent of kids with SEND you have to have the skin of a rhinoceros because you will come across a lot of this idiotic nonsense... From 'just be stricter', 'stop giving him junk food' to the ridiculous like the above.

There is a SEND board on Mumsnet, it still gets a high level of traffic so quick responses etc, but generally everyone on there has experience of SEND and is supportive and has a bit more knowledgeable.

I hope this poster hasn't upset you.

Just to second this, op. Our dd was very similar to how you describe (minus the toileting problems) and we eventually stopped battling with her every morning (she drew blood with her scratching and pinching) and let her stay home while she recovered mentally. Taking that pressure off all of us helped so, so much. Two years down the line, we're so much more aware of her triggers, understand her difficulties so much better, she has an ehcp in place, is attending school all day every day and generally thriving - with the odd blip. The focus has to be on reducing the anxiety in the first instance, and until you know what you're dealing with and have had an EP report, it's guesswork. There is light at the end of the tunnel. It just seems like a very long tunnel at the start.

Sunnyevenings · 15/05/2025 08:09

CleverButScatty · 15/05/2025 06:52

What a helpful post.
OP your lovely son is not going to end up in residential care.
He might spend quite a bit of time out of school over the next 12 months whilst you get a diagnosis, EHCP in place and him into a suitable setting. (The diagnosis is massive for securing support, if you can beg, borrow or steal the money I would-i paid £2200 for a very good company, DM me if you want me to send you the details).

Unfortunately when you are a parent of kids with SEND you have to have the skin of a rhinoceros because you will come across a lot of this idiotic nonsense... From 'just be stricter', 'stop giving him junk food' to the ridiculous like the above.

There is a SEND board on Mumsnet, it still gets a high level of traffic so quick responses etc, but generally everyone on there has experience of SEND and is supportive and has a bit more knowledgeable.

I hope this poster hasn't upset you.

It wasn’t my intention to upset at all. The person I am referring to who lives in residential care moved into it in his early twenties. His parents were/are too old to support him. I was trying to reassure the worry for the OP trying to cope on her own far in the future which is a worry she will very likely have too.

dietstartstmoz · 15/05/2025 08:09

What a terrible time you and your boy have had. He obviously has ASD and hr has been failed by schools and camhs.
You have had some great advice on here. As a fellow mum to an ASD boy, we have had our battles getting support and camhs involvement too.
As others have said go to the GP and explain the situation and ask for an urgent camhs appointment. If he is hurting himself then you should be seen quicker and you should also be able to be bumped up the ASD assessment list if other professionals are also pushing camhs for this. It sounds like your son needs some time out and help before he is ready to go into a school and he clearly needs an ASD setting when he is ready for this. Apply for DLA you do not need a diagnosis at all to qualify. There are guides online to help you to apply, I think cerebra is one. Contact your local sendiass service and explain everything. They can help you to apply for an EHCP. The fact the mainstream primary said they couldn't support him shows he needs an EHCP and they should have been applying for that. Do you have an early help service within your local authority? That should give you someone who will liaise with all these services, camhs, SEN etc to get things moved along. And are there any local charities for families/carers of SEN children in your area? There are some good ones in my area where you could go along to a coffee morning or to a group on a weekend and have a cuppa, a cry and get advice and support for you both.

You need a referral to camhs and everytime your son hurts himself you call the crisis line, every time so it is logged and they can see that this is a child who needs help. It all helps to put pressure on them.
And lastly look after yourself. It's the hardest hardest time and having been through it I understand what you're going through. Remember this time will pass and you will get the help you need. For now focus on looking after the two of you and get help with fighting the services as it's exhausting.