Five-year-old refusing school with EBSA and severe distress, what next?

[lazybumblebee]

Hi,

I’m at crisis point with my son. He has EBSA and has reached the point now where he will not go into school. Not even just for playtime or lunchtime.

He’s 5 years old and started reception in September. Hadn’t missed a single day of school until 5 weeks ago. He used to be so excited to go every morning and skipped into school with his friends.

Things started to unravel extremely quickly. He started complaining of headaches and having meltdowns after school. One day he was sick and got sent home, he told me it was too loud and gave him a headache so he was sick. After that he stated to be tearful going in. We did the recommended thing of encouraging him through the door with a teacher holding his hand on the other side etc. He then quickly stopped being willing to go through the school gates. In the last week before the Easter break male teachers had to physically restrain him to get him through the door, with him kicking and screaming. This all escalated in the space of three weeks.

After the Easter break he now completely refuses to even leave the house, and if forced he kicks, screams, grabs anything he can hold on to. This has got so extreme that he vomits from the stress of it and self harms at the thought of being forced to go in to school (hits himself in the face and head). My husband has to physically restrain him all the way from our house to the school (10 minute walk), and a very strong teacher has to pin him down in the classroom to prevent him from running out.

He has also developed severe separation anxiety as a result of all of this, outside of school. He will no longer go to a sports club that he adored and he doesn’t want to be left by us, and is even distraught at being left with my mum (who he has spent full days with and slept over with since he was a baby). It is extreme behaviour and so out of the norm for him. He is a happy, bright, sensitive child and so well behaved.

I can’t do this anymore, I’ve told the school this week that I’m no longer willing to force him to come in. I can’t allowed him to be vomiting and self harming at the thought of going to school. He also has completely lost trust in me and his dad because we’ve been forcing him to go. I think this is why he’s terrified of being left at his sports club and at his nannas.

What on earth do I do? We have a meeting with the school next week to discuss this. But his teacher rang me on Wednesday to tell me that there recommendation is to still keeping bringing him to the gates and handing him over. So I don’t know how hopeful I am.

We think it is likely that he has AdHD. He has always had traits of this and I’m wondering if he’s masking at school and it’s just tipped him over the edge having to be so still and calm whilst he’s there. The teachers tell me he is fine once he’s calmed down in the classroom room, but he often has multiple stickers on his jumper which he says he gets given ‘for stopping crying’.

Pleas help. What should I do?

Totally agree. Restraining ? And pinning down by a teacher ? No wonder he is unhappy.
What sort of teacher pins down a child.

Advice from the autism society on school refusal in autistic children:

https://www.autism.org.uk/advice-and-guidance/education/attendance-problems/parents

Inform the school DS is ill. Check the absence has been coded as I. The working together to improve school attendance statutory guidance states absence becuase pupils are unable to attend due to ill-health both physical and mental health related must be coded as I. They shouldn’t routinely request evidence unless the authenticity of the illness is genuinely and reasonably questioned. This is support by The School Attendance (Pupil Registration) (England) Regulations 2024 make it clear where a pupil is absent because they are unable to attend due to sickness the absence must be regarded as authorised. That applies to mental ill health and physical ill health.

Children can experience breakdowns. Burnout is also possible. The headaches and vision problems may also be migraines, which are more common in ND people.

You can request an EHCNA yourself. On their website, IPSEA has a model letter you can use. Be careful with SENDIASS. Some are good but too many repeat the LA’s unlawful policies.

The school or GP will be able to refer for a diagnostic assessment.

Absolutely stop sending him in and seek medical help. It’s obviously damaged your relationship with him from forcing him to go in however this can be rebuilt. He’s struggling and your figuring out how to navigate this. Just remember the school care about their statistics, not so much your child’s well being

If teachers are restraint trained (assuming these are if they did it) then they will be using it as a last resort to stop him hurting himself or others.
De- Escalation is always first. If no use then restraint trained staff can step in.

Noone wants to restrain a child believe me.

Its a sad state of affairs in schools that teachers need to be restraint trained. Noone goes home feeling good after a day like that believe me.

@lazybumblebee im so sorry to read all this. The thing that is calling out alarm bells to me is that it is so sudden. He was going in fine, loving it (not a mean feat at 5!) Then all of a sudden in a short space of time you are at this point....im not ruling out ND.....but something has happened at school.

I work in an AP. I see this all the time.
First things first please continue with the medical diagnosis. Something is going on here with the vomiting/headaches/visual disturbances. Ask your GP for some evidence to submit to school to give yourself some breathing space.

Then start a referral alongside the school to get him assessed, and stsrt looking at alternative provisions in your area just in case.

Whilst at home, I would make sure hes in a routine akin to school, up and dressed, breakfast, then do a bit of phonics, reading, writing in the morning. Snack time and outdoor play....then some maths and then lunch. Then do some art or something.
Keep the day structured and learning byt fun too.
Talk fondly of your time at school, and over time maybe he will divulge more.

Good luck!

I have experienced the same, its hell. You can apply for an ehcp but they won't assess unless there's evidence the school has implemented a Graduated Response.

Apply for a data subject access request for all entries and recordings of behaviours in school. Go to your gp, request a camhs referral (could take up to 18 months to get seen), request a Peadiatric OT assessment to explore sensory needs (noise/crowds/concentration), request an early help assessment. Basically request everything to collate enough evidence for the LA to consider assessing for an ehcp.

Make sure you keep logs too. We were delayed massively by poor recording by school which meant not enough evidence.

It started in Reception. We are finally being assessed for the ehcp in year 3.

Speak to SENDIASS ask for advice.

I wouldn’t necessarily go down the neurodivergent route just yet, it seems highly likely that something specific has happened in school which has really impacted him. Does he talk about his day? I’d ask for a referral to CAMHs as they will have strategies which can help to try and unpick what has happened. I hope you get sorted soon, it’s hard to see your precious child so distressed. The school should mark his absence as illness (anxiety) so just make sure this is happening so absences are authorised.

You can apply for an ehcp but they won't assess unless there's evidence the school has implemented a Graduated Response.

The only lawful test for an EHCNA is a) has or may have SEN, and b) may need special educational provision to be made via an EHCP. Any other test, including requiring so many APDR cycles/a graduated response, is unlawful.

I hope your son is doing okay today OP.

My DS had a complete MH breakdown aged 10 so it does happen in children. He also needed an MRI to rule out any physical cause. He had developed a phobia about school at that stage and couldn’t even be in the same room as his siblings schoolbooks for a very long time.

He had been diagnosed with autism aged 8…we had no idea until he was aged 5 or 6 that it could be a consideration as we knew little about it. In hindsight I would say the signs were there from a very young age, but as he didn’t have some of the more obvious traits we missed it. I wonder could it be similar in your DS’s case? Looking back it’s clearer and the signs become more obvious as they grow older too. My DS also has adhd and ocd, and ocd in particular is extremely debilitating. The intrusive thoughts made him completely unable to function. They were there from age 5 or 6 but we didn’t recognise it as ocd at the time.

I wish you and your DS all the very best. I know how difficult this time can be.

I’m sorry your family are going through this OP. It is extremely stressful.

we had the same problems with my DD but it started later on, a little bit in Yr3 but manageable then it went full blown EBSNA in Yr4/5. It was hell.

Just want to reiterate what a previous poster said and say that physically no forcing/pulling them in is not the answer. It made my DD so much worse, she developed a fear of being trapped and got to the point where we couldn’t shut any doors.

She was diagnosed with ADHD and started medicine which helped her quite a bit, it has taken best part of two years but she is in school regularly and HAPPILY!

we also obtained an EHCP for her which has also helped.

if you feel he shows signs of SEND then it is worth investigating. A huge percentage of kids with EBSNA also have an additional need.

time and patience is needed for sure. You have my sympathy it pushed us to the brink regularly.

Has he been unwell at all recently? Could it be pandas ?

Can you work with him at home? Home schooling?

Has he been seen by the GP? I think this needs to be explored medically. As someone who had EBSA as a child (though it wasn’t called that back then), it didn’t come on suddenly. It was drips and drabs and a trickle here and there until it wasn’t. I think it’s also quite unusual to see such a dramatic change in a 5 year old (compared to a 15 year old).

I would want possible physiological causes explored. He’s been complaining of headaches and also experiencing vomiting. These are classic signs of a brain tumour. How is his balance? Is he wobbly or more clumsy than normal? Things can flare up at work or school that are fine at home. PANDAS is also another possibility. I think this needs looking at by a GP rather than just assuming this is him expressing that he doesn’t want to go to school. I’d be worried he is truly not feeling well.

On top of that, I’d want to explore if something happened at school or outside of it that you aren’t aware of. Children don’t have a lot of control over their own lives and refusing to go to school is one way to scream things aren’t okay without actually having to say it. In my case, the not okay things weren’t happening at school, but staying home made me feel safe and I liked feeling safe.

How are you getting on?

This sounds so awful and stressful for you and your boy OP.

My eldest DC did half a term at school before I couldn’t bear the crying and depression any longer. She went from a happy, confident child to a clingy, sad, anxious one, and it took her years to regain her confidence. Before going to school she had happily separated from me and was the life and soul of the party at nursery, but all that changed at school.

I ended up home educating, initially as a temporary solution to my daughter’s unhappy school experience, but ended up doing it long term. You don’t need to look that far ahead.

My DD ended up doing very well at school when she eventually went back, and went to a great university. Everything will work out for your son, I’m sure — but don’t send him back to that school.

Hi everyone,

Just doing a quick update. It helps to write everything down.

The meeting with school last week went well. The inclusion manager agreed that we shouldn’t be forcing him into school, as this is clearly making everything much worse. She’s set up a little office room for me and him to work in if I can get him there for a bit each morning. It’s quiet and I can sta with him. This has been successful, after trying it a few times last week he willingly went down to school this morning and we spent two hours in his little room doing work together. He would also walk with me to his classroom to collect a new phonics book from his teacher, but panicked when it was suggested he might want to go into the classroom to see his friends.

The school say they’ll support any assessments we want to get done, and have suggested both ADHD and autism assessments to get a full picture. I’m not sure how to go about this? We’re more than happy to pay privately, but which route/clinics are best?

my son is still super anxious about me leaving him. I can’t walk the dog on my own or even have a shower on my own. He follows me everywhere and it’s getting me down. I need some alone time and also feel really terrible for my other son who I haven’t been able to spend any one on one time with. My husband is more than willing to give me time alone but it feels impossible when my son screams and clings to me at any suggestion of it.

We also have a brain CT booked for a couple of weeks time just to make sure there’s nothing sinister lurking there.

I am so tired and stressed. I can’t see him ever going back to school. My husband has a good job but it doesn’t pay enough for me not to supplement with a part time salary, so I don’t think we can afford for me to home ed.

It’s good the school are being supportive now at least. I’m in a different country so I’m not sure about the best approach for assessments where you are but wishing you the very best with it all.
Could you spend time with your other child while DS is in the room but engaged with something else? Or spend time together as a family. Or a friend calls to you? Hopefully the situation will improve over time 💐

The school can make the referral to a community paediatrician for ADHD and autism assessments. You won’t need to pay but I don’t know how long the wait list will be. ADHD here is assessed a little later - around 6/7 years old to allow for normal developmental differences. Sounds like you are going at his pace and that’s the right thing at the moment. Does he talk about school or what he likes and doesn’t - does the school have an ELSA or similar who can do wishes and feelings work with him?

Has your son been anywhere without you just before all this all started? It really does sound like hes reacting to something traumatic thats happened with the sudden onset separation anxiety which was not there before?

Have you racked your brains for every eventuality? How is he with your husband, do you think somethjng could have happened there (an argument or something)

Not suggesting it isnt neurodiversity but also dont rule out some event thats brought this on either.....

Did you go somewhere and were late to pick him up (could be something minor but not minor to him)

Have u tried art therapy whereby you ask him to draw times where he felt sad/scared etc and then talk about it? You can model things and roleplay with his favourite toys too

For an autism assessment via the NHS, the school or GP will be able to refer. The assessment process varies depending on the area. In some areas, it is via community paeds; in others, it isn’t.

You could look at Right to Choose. Although some areas have paused RTC referrals, so you would need to check.

If you want to go private, make sure the assessment follows NICE guidelines.

Most ADHD services will want DS to be older before an ADHD assessment. Before going private for an ADHD assessment, consider the issue of medication if diagnosed. Could you afford to fund medication? Most GPs won’t take on shared care when diagnosed privately anymore.

My first thought was ASD, the first thing that was noticed in my son's case was him putting his hands over his ears because he didn't like the noise in assemblies.

What is the school like? Is it a very lively, busy school with a lot of kids? He'd probably benefit from a small, quiet, calm classroom. Does he struggle with playtimes? assemblies? both can be difficult. It might help him in class if he sits right in front the teacher. Might he be willing to wear ear defenders?

I wonder if something happened around the time everything fell apart, if he is ND he could have rejection sensitive dysphoria and is might be something quite minor like a small telling off that has left him feeling terrible and like he can't cope there any more. Is he very sensitive to perceived criticism do you think?

Sorry I haven't fully read the whole thread to see if this has been discussed but have migraines been considered? My son, 6, gets migraines and the lights in school plus noise can trigger them, it causes severe headache, vomiting and aversion to light. For us it is nowhere near the level of what you describe in terms of the ongoing impact, but thought it was worth mentioning.

It does sound like something physical or emotional happened out of the blue.

How are his symptoms since he’s been off school- is he still having vision issues and headaches etc?

Oh god, that sound awful. My son (now 8) had a terrible time in school and we took him out to homeschool a few months ago. He just didn't feel safe and was in panic mode a lot of the time. It was like he had some sort of trauma. He's still recovering at home and clamps up if he feels we're trying to get him to do anything school-related so I'm trying to teach him through play and games.

Your poor son sounds traumatised. Those teachers shouldn't have forced him into school when he clearly doesn't feel safe in that environment.
I read a great book by Dr Naomi Fisher called 'What to do when school's not working' which I would highly recommend. She has lots of talks and resources on her website which you might find helpful. It does seem like something may have happened in school as it's such a sudden change. Kids can suffer from burnout and mental breakdown just as much as adults can.
I hope he feels better soon. I'd advise you not to rush into trying to get him back into school. My husband had burnout from a job he was working in and when he went back in to leave his laptop he nearly had a panic attack just from setting foot in the office. He'd never had anything like that before. It's taken him years to recover and he's generally a very emotionally stable, strong person.

We don't force adults to go back to jobs and environments that they can't stand. We shouldn't do that for kids. The school setting doesn't suit all children. In fact, I think school is actively damaging for some children and the system needs to change.

Take care of yourself too in all this. It will all work out.

I would pay to have him assessed for autism. Otherwise you will be waiting for a long time in an nhs waiting list. Even right to chose lists are going up.

he’s too young for an adhd assessment but during the Autism assessment they would take a full developmental history so would be able to give you an indication of whether they felt there were adhd traits that you could investigate later.

regardless a diagnosis isn’t a magic wand and it won’t really change anything. It sounds like you’re working well with the school. Ime it will be a while until he’s back in full time. I hope all the tests are the hospital go well.

I’ve seen a lot of autistic kids (more so this past year) complaining of severe headaches. Real to them but no physiological cause. More psychological from extreme burnout/ overwhelm/ sensory overload.