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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:
Verbena17 · 14/05/2025 21:31

Hi @Tiredmumof32014
Im so sorry you’re not getting any support from the people who should be helping you.
I don’t know where you live, but if you lived close to me, I’d be coming round for a cuppa and a chat to help you tomorrow! 🤗

My son (20) is autistic and from your post, you believe your son is autistic too.
I can tell you almost to the very letter, your son is showing almost identical signs as my son was until we had the right support and until I took him out of his mainstream secondary.

We started very quickly putting in place ‘zero demand parenting’ and it worked very very quickly. I think that while your son is at home, if you removed all demands (and anything he perceives as a demand), you’ll see a massive difference pretty soon. That won’t be a long term solution because the schools he has been to just were not supporting his needs and he was dysregulated almost 24/7. But it will be a start.

Next, if he will tolerate it, look up ways to suppress his overwhelm - so a weighted blanket when he’s getting anxious, deep pressure using a gym ball rolled over his arms and legs, pushing and pulling, blowing through straw, bouncing. All things that will help regulate his nervous system. There are lots of videos for this on YouTube.

Then if you can afford it, pay for a private ASD assessment.
I can link you to the two people we used but they don’t work together anymore and have their own clinics. Both ladies are brilliant and very well known in the world of autism.

  1. Dr Judy Eaton at https://help4psychology.co.uk
  2. Dr Jo Jones at https://healthcare4kids.co.uk
Both doctors have worked as NHS doctors and we have never had a problem having their tandem diagnosis for our son.

In addition, you could contact your local council’s autism team and see if they can offer any support. Usually they have a good team for first contact and fast help - often at your home.
I have many years of lived experience with an autistic child who sounds very much like your son, so if you ever want to message me, please don’t hesitate.
I’m in Northants so if you’re close by I could suggest other schools/options etc.

Stay strong - you know your son better than anyone.

Home

Expert autism assessments for children & adults in Norfolk & the Midlands. NHS & private appointments available. Registered specialists led by Dr. Judy Eaton

https://help4psychology.co.uk

Worriedmotheroftwo · 14/05/2025 21:33

Poor kids. He's been failed by a terrible broken system.

As a little child he sounds like my son. My son is now 6. He got kicked out of nursery for hitting other kids and I was terrified he'd also get kicked out of his (private) school. He also had issues with toileting and violence in Reception.

Difference is, he was diagnosed with ASD and ADHD in Reception and got an EHCP swiftly. Lots of support has been put in place and the school understands his (ever changing!) needs.

So it's really unfair that your son hasn't been offered the same opportunities.

I'd do the following:

  • arrange for an Occupational Therapist assessment (in school so they can see him intetact with other kids in the classroom)
  • arrange for a Speech and Language Therapist assessment (again, in school).
  • with this information, apply again for an EHCP. Collect as much evidence as you can and hire an advocate to help you to write it (not necessary but if you've had an application rejected twice already, thr help might make the difference). Get advice from IPSEA and SOSSEN.
  • in thr meantime, insist on an IEP being written up. SENCo needs to be observing him and trying to identify triggers for needs.
  • go for an ASD and ADHD diagnosis again - this time, privately. If you can't afford private, use Right to Choose (private but free, and waiting lists far shorter than the NHS though not instant).
  • if you can afford it, set up Clinical Psychatrist appointments for your son. You can get this through CAHMs but much more likely to be regularly (and soon!) if you go private. We still found a long waiting list even privately, for the one we wanted!

On re-reading this, I do realise that I've not referred to the fact your son has been out or school for 2 weeks. I'm really sorry - I don't have any advice for that. I'd be badgering the LA (all the relevant phone numbers I could fine) constantly, multiple times a day, and firing off all the emails, until I got a response.

And yes, go to GP. Phone up tomorrow and insist on an urgent appointment. Print off what you wrote in your OP and take that in. Ask for clear step by step advice. (Don't be shocked if you get none - our experience was awful and we had to figure it all out ourselves). Insist on next steps being taken - whatever the GP thinks that looks like - and an urgent CAHMs referral.

And yes, apply for DLA. It gets backdated to when you phone up to ask for the forms, so do that tomorrow. Then you have plenty of time to fill those in. We get DLA. We've spent a fortune on my son's additional needs so it is very welcome.

Good luck. I really really feel for you. There are so many of us who have expereinced similar and you are NOT alone.

Libby360 · 14/05/2025 21:34

TBH I only got as far as Yr3/4 and though this has got ASD written all over it. Many things I recognise from the early days with my ds.

Your list is amazing though OP. Please print it off and take it with you to see his GP again or to a private diagnosis if that is possible. I took a list like this when my ds was diagnosed at 11 to my GP.

I'm so sorry you and he haven't been able to get any support or even a diagnosis, honestly it is a fucking joke.

Glenthebattleostrich · 14/05/2025 21:34

Firstly, you are doing an amazing job holding everything together.

Secondly I am horrified by how badly you and your son have been let down by all the professionals in his life who have let him down.

My first thought was ASD with PDA profile, he sounds so similar to a child I used to work with its scary.

https://www.pdasociety.org.uk/what-helps-guides/ these may help.

https://www.autism.org.uk/advice-and-guidance/help-and-support or here

Please go back to your GP and restart the ball rolling for assessment.

Illustration of a person with a backpack standing in front of several road signs pointing in different directions, symbolizing the challenges and choices faced by individuals with Pathological Demand Avoidance (PDA).

'What helps?' guides - PDA Society

The PDA Society created these 'What helps?' guides to provide helpful and practical information to make life easier for PDAers and those around them. If

https://www.pdasociety.org.uk/what-helps-guides

Blueskies77 · 14/05/2025 21:35

I’m so sorry that you and your son have been let down like you have. It’s very clear that your son has complex needs, including in my opinion, autism. Unfortunately I’m not skilled in this area, however I’d go to the GP and also look at the Right to Choose route for asd assessments. I’m not sure they work for kids but it’s worth looking up. I’d look at contacting your local social care team and discuss with them about you putting in a referral for your son, make it as detailed as possible, and they might be able to support eg allocate a social worker, do an assessment, look at his needs etc.

Createausername1970 · 14/05/2025 21:37

I can relate to a some of what you say and I truly empathise with you.

My son was in the verge of being suspended from his secondary school when he was 12, but after a huge melt down at home, including head banging against the wall, and having one teacher calling me on my mobile and another one calling on the home phone at the same time, and him then curled up in the cats bed, clutching his cot blanket, watching Winnie the Pooh on DVD, I decided enough was enough and I removed him the following day.

I noticed an change in him over the next few weeks, far calmer. He just couldn't deal with school, it was sensory overload.

I am not advocating home schooling, it's not for everyone, but if you can keep him at home for the foreseeable future and allow him to calm down, and regress emotionally if he needs to, then it might be beneficial in the long run.

NeverDropYourMooncup · 14/05/2025 21:41

The LA might not have been told by the school that he's been PEX or left, so you need to get in touch with them in the morning.

Feelingleftoutagain · 14/05/2025 21:44

You poor poppets, OK contact your LA explain kicked of school and ask for additional support, you could get a home tutor, next contact Dr explain your struggling with toileting etc, have him checked for any issues, they can also get a nurse to help, also contact ss they maybe able to help with getting additional support, just know you are not alone and there are a lot of people to talk to in here xx

MumWifeOther · 14/05/2025 21:46

I’m really sorry you’re going through this, it must be heart breaking, for you but also him 💔 Could you set up some cameras at home that maybe you could show the GP or a social worker so they can see for themselves that you both need urgent help?

SalmonWellington · 14/05/2025 21:49

ERIC can help with toileting, and as pp said constipation can cause incontinence because the poo overflows past the blockage iyswim

Apply for DLA now if you haven't already. Cerebra have a useful guide. If you can get school to write down why they have expelled him, that is useful ehcp and DLA evidence.

Don't tell the local authority you are willing to homeschool, because that takes away their responsibility to find a school.

I'm sorry. It's grim. But it can get better.

An autism diagnosis can be useful, but tbh you might get more from salt/ed psych and ot reports to show what his needs actually are. You should get those through the ehcp.

Outrageistheopiateofthemasses · 14/05/2025 21:50

I am so sorry. That sounds unbelievably tough, exhausting and heartbreaking. You are clearly a very loving and supportive mother and he is lucky to have you. I hope someone on this thread can give you some helpful advice.

Teenybub · 14/05/2025 21:51

If you don’t mind sharing, what city/council are you under? Some do things differently, maybe sharing would help someone suggest how they got a diagnosis? I’m happy to sit and do some research for you

Ubertomusic · 14/05/2025 21:53

I'm sure others said upthread but sounds very much ASD with sensory overload. Toilet issues may be related both to problems with sensory integration and regress due to the long term stress.

I'd homeschool for the time being and pay for a private assessment for ASD and co-morbid conditions. Then decide what's next when the clinical picture is more clear.

Horrific treatment from CAHMS but they are increasingly useless.

HeyPooPooHead · 14/05/2025 21:54

year 4 when the school was unable to support him - personally I feel you should have kept him there and pushed for an EHCP while the school was struggling more and more. Often things have to completely fall apart to make progress with EHCPs sadly.

If he hasn’t a diagnosis nows the time to pay for one, rather than a new fee paying school. Also gain input/strategies/evidence from an occupational therapist and SALT. Your child might benefit from a sensory diet and specific communication strategies. As they say, all behaviour is communication.

Sdpbody · 14/05/2025 21:57

I think it is absolutely atrocious that the school haven’t supported an EHCP.

Private school was never going to be the answer unless very specifically for SEN. The parents would have absolutely been putting pressure on the school to move your child on.

I feel so sad for you! You are about to embark on an up hill battle. You have got this!!

HeyPooPooHead · 14/05/2025 21:58

Also ask the SENCO and class teacher to write a statement of evidence for the EHCP. The more evidence you have the better.

Cursula · 14/05/2025 22:04

I’m so sorry OP
You’ve got loads of great advice already and I’d add, please escalate to your MP regardless of party, they will have huge influence particularly at the moment when there is a spotlight on these issues. As other PPs have said, if you lived near me I’d be giving you tea/wine/whatever and a listening ear.

KurtShirty · 14/05/2025 22:04

Clearly you’re dealing with ASD plus a load of trauma, heart going out to you guys.
Just want to second the above- low demand parenting is a total game changer. Lots to learn, very counterintuitive in many ways but has transformed life for us at home.
i got this course and just listened to it like a podcast, found it really (really) helpful https://courses.naomifisher.co.uk/low-demand-parenting

Low Demand Parenting

Webinar recordings from the Art of Low Demand Parenting with Naomi Fisher and Eliza Fricker

https://courses.naomifisher.co.uk/low-demand-parenting

Changingnameagain · 14/05/2025 22:04

I'm so sorry OP- this is such a lot for you and your DD to deal with. My DD is 7 and has an ADHD diagnosis and pending ASD diagnosis currently. Much of what you described of your DS behaviours resonated with me.
We went via right to choose pathway to avoid the 5 year long NHS waiting list. Right to choose is still free via NHS but they use private providers if the NHS route wait is more than 6 months which for assessments for ADHD and ASC it is in most if not all of England. We used clinical partners. You can download screeners for children on their website and I completed those then booked a GP phone appointment l- explained concerns from school and home and sent them website link so they could access and complete the GP referral form. I then emailed GP screeners too. My daughter was seen for ADHD assessment in 5.5 months. The ASC assessment has been done direct through NHS. We waited nearly a year for first part of assessment and it has been 18 months since then- and counting- to get the ADOS assessment done for her. By time that happens the first assessment will be invalid anyway I think due to difference in age when this happened. We will be going back through Right to choose for her ASC assessment now.
Please also challenge the permanent exclusion. Even without a diagnosis it is clear your son has additional needs. Schools cannot legally permanently exclude students with SEN simply because they have behaved in ways that are caused by their SEN- that is disability discrimination. Please contact IPSEA or SENDIAS for support on that. But make the diagnosis a priority to support.your EHCP application so you can get an appropriate provision named for him for year 7. Sending huge hugs. It is so relentlessly hard parenting children with SEN and battling the education system and health care system and local authority.

Secretsquirels · 14/05/2025 22:05

This sounds very much like autism to me as well.

The whole nhs system is broken - get him a private assessment and diagnosis as the first step. These cost in the region of £3-4k for an in person assessment for autism and adhd. Cheaper if you do an online assessment just for autism.

Tell the school (in a lovely, polite, well written letter) that you won't appeal the exclusion if they write a supporting letter giving clear examples of everything listed in your OP and agree to support with the EHCP and specialist school referral. Ideally you also want evidence of rigid thinking, difficulties with change and transitions, social communication difficulties, trouble understanding non verbal communication etc.

At the same time, for the continence issues you need a referral to the bladder and bowel clinic. In the mean time try giving him a daily stool softener and a daily probiotic gummy and seeing if that works.

I'd also try and really really reduce all demands on him right down for four weeks and see if that improves mental health and behaviour.

BigHeadBertha · 14/05/2025 22:12

So he's obviously disabled but he's somehow fallen through the cracks instead of being given the appropriate help.

Can you now use his expulsion from school as the basis for him receiving special education services? That seems like some very solid evidence to me so it could be a blessing in disguise in the end.

Sorry, I don't know how special education works in the UK. Good luck. It sounds like you've really been put through the wringer and left on your own with it all. The way you've both been disregarded sounds outrageous, ridiculous and horrible, in fact. :(

Theworldisinyourhands · 14/05/2025 22:15

OP I can't stand when people diagnose neurodivergency for nothing on here but.... This really sounds like your poor ds has ASD and has been horribly let down by his schools who should have had support in place years ago. Gently it sounds like there's maybe an element of trauma and attachment issues as well.

I think the priority here is getting him the help that he needs for his mental health. School can wait. Do you have the facility to homeschool for a bit whilst waiting for things to be sorted? In an ideal world school are best placed to seek support and referrals but since they are apparently worse than useless I'd agree with pp who've said see your GP. I'd also contact your school nurse (or whatever they're called these days) Stay strong OP. I'm sorry you're going through this xx

Yellowbluemonday · 14/05/2025 22:15

Had been involment or referral to:
Developmental Paed?
Genetic testing?

its impt to get a diagnosis & even if there is no definitive diagnosis you need one to get EHCP or good referrals for investigative tests / assessments & invites to clinics for regular checks.

You child needs a lot of support, but needs also to grow independent from you. I have a similar, adult now. He did get a rare genetic syndrome diagnosis which helped. But before the definite diagnosis/ he was diagnosed ASD because Drs knew only way he would get education support.
I used alarm pants and pads for nighttime dry for 10+ YEARS. Paid private urologist at age 11-12 but found no reason. He also challenging behavior.
He also ate a hands if allowed … we made many accommodations - foods could use a spoon, with sauces because chewing was difficult.
bites his hands when frustrated / angry
we got a bidet hose fixed to toilet to help keep clean.
I went on a lot of Google searches for things like cutlery for disabled, calming ideas, special door locks, waterproof mattress, “tough furniture”
We have so many weird accommodations that seem normal to us now …

Everythjng was difficult for him & always had ear infections … we were able to get him out of home and living independently w 2 carers when he was 19, complicated situation but I am finally not stressed all day & night.

Really, you need NHS on your side because it will link in with education, child disability Benefits (do the paperwork!!) … you need support and your child needs right education which means need a diagnosis. Push for genetic testing, and ASD/adhd/PDD or anything diagnosis.

Contact local SEND at your council - urgent assessment because he needs to be in school and accessing services.

PinkCentipede · 14/05/2025 22:17

I did the EHCP referral myself as a parent. Took full control - and I now don’t rely on any school or even the LA to write it correctly. You need to refer to IPSEA, find out the law and fight.

I see schools as time and funding constrained, LA slightly better but time and funding constrained. Both make appalling mistakes and missing lawful deadlines is commonplace, Except they don’t tell you. The law and your rights is what you need for best information and the correct information,

And then fight, fight, fight.

Find out the email of the Director of Children’s Services in your area. Tell them exactly what is going on, and this should prompt action too.

@Tiredmumof32014

IPSEA is an excellent and amazing website. Draft letters for when you need to disagree and challenge decisions.

https://www.ipsea.org.uk

(IPSEA) Independent Provider of Special Education Advice

IPSEA (Independent Provider of Special Education Advice) - helping children and young people with special educational needs and/or disabilities (SEND) get the education they are entitled to by law

https://www.ipsea.org.uk

ButteredRadish · 14/05/2025 22:19

This is insane NOT calling your poor DS insane to be clear, I’m calling the total neglecting of your DS & you, by the very services who are there to help you.
My DD is in Y5 and got a diagnosis of ASD at age 4. Started the process by going to a Speech & Language drop in at 18 months. No contact with CAMHS or GP needed.
I’m so, so sorry you’re going through this. And your DS 💔