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?

Just to add, he’s at end of year expectations for his reading, writing and numeracy. So he is achieving and is bright. The class have also have 5 different teachers since September, due to sickness and maternity leaves, which I think might be relevant.

Is anything else going on at home? Any bereavement, illnesses etc?

Ask GP and School (separately) for a referral to CAMHS. Is there any neurodivergency in the family?

@Edictfromno10 Nope, nothing has changed at all. It’s completely out of the blue.

@dippedydoodah great thank you I’ll add those to the list of things to ask about. And my husband likely has ADHD but has never been assessed. He had a small breakdown at about 8yo and had some time off school. Also had OCD around the same time but was never assessed. He was fine with school after that though.

Ask school for a professional referal to cahms. In our area it won’t be considered unless you’ve done certain parenting courses.

Look in the website and facebook page not fine in school and the website barriers to education, read about section 19 requests although I won’t go down that route yet. School should be starting an ebsna tool kit and be starting TAF meetings.

Your poor son, and you. It must be so incredibly stressful.

Under Section 19 of the Education Act 1996, the LA has a legal duty to secure suitable full-time education for children of compulsory school age who, by reason of illness, exclusion from school or otherwise, may not for any period receive suitable education unless such arrangements are made for them.

You need a meeting with school and the LA to request alternative education.

You also need to apply for an EHCP. Your son doesn’t need a diagnosis - the EHCP should be issued on need. You don’t need to wait for school to apply, you can apply yourself or a representative can do it on your behalf. It can be a long, frustrating process but if your son meets the criteria (which I’m sure he will), you can put forward a preference of school or ask for an EOTAS package. There are lots of variables. Happy for you to message me for some advice.

I would absolutely stop forcing him in and restraining him etc. He's a little boy not a high risk prisoner, school is meant to be enjoyable.

Request an EHCNA. On their website, ISPEA has a model letter you can use.

When did DS turn 5? If it was last term, he is now compulsory school age, so the LA has a duty to ensure he still receives a suitable full-time education. Provision should already be in place given how long DS has been absent. If DS turned 5 this term, he isn’t yet CSA, so the LA doesn’t have the same duty, but it is worth asking.

Check how the school is recording the absences. They should be authorised.

If your area still has them, ask the school to refer to the specialist teaching service.

Request a referral to CAMHS.

I would also request a referral to community paediatrics.

Not all ICBs commission sensory OT support on the NHS, but if your area does, it is worth a referral. In some areas, you can self refer.

What support has the school provided? What have they already tried that didn’t work.

Follow up all verbal conversations with the school with emails to create a paper trail.

Please don’t let anyone physically carry DS into school and pin him down again. Physically forcing DS into school is likely to cause further trauma.

You’ve done the right thing by not forcing him in anymore. Be firm with school that it is causing him harm and you are not going to risk long lasting trauma. They need to seek outside professional advice and have a plan for what support they are going to put in place alongside a phased return (if you decide to try him continuing there).

Could you find a play therapist, they might be able to help work out if there is something in particular that has caused him to not be able to attend, or whether it is a build up of being overwhelmed by the environment.

What is the process for ADHD assessment in your area? You could look into Right to Choose options as often quicker. You don’t need a diagnosis to request an EHCP assessment but it can help to show he’s been referred.

He needs time to recover and rebuild his sense of safety and trust in you. Just focus on letting him do things he enjoys and finds calming, and completely remove the expectation he needs to go to school at the moment while you figure things out.

I have been through EBSNA with two of my children. The one thing I really regret was listening to the teachers telling me what was best for my children instead of trusting my gut about what my child needed. I wish I'd never sent my son to school. It totally broke him. A child who is as distressed at school as you describe is not "fine", no matter what the teachers tell you. I used to be a teacher and I had no training in this at all, I didn't have a clue and would readily have told parents that their child was "fine", which basically just means "not disrupting anyone else".
I'd imagine that having 5 different teachers in reception is definitely a massive driver of his feeling unsafe in school, but also the school environment is just not a nice place for some children and they just cannot cope no matter who the teachers are.
In your shoes I would home educate if financially viable, or find a small private school if even more financially viable! Or try a different primary school with more informed staff who don't restrain 5 year olds. And then perhaps apply for the EHCNA and Section 19 but bear in mind that dealing with SEN departments of LAs is unbelievably stressful and the fight to get what your child needs is very difficult and takes a very very long time.

I strongly believe that if my son had been able to stay at home or in a more child-led environment until he was 7, instead of being forced into the classroom, made to sit still for hours on end, and restrained when he was distressed, he would have managed OK. As it is, now at the age of 12 I don't think he'll ever get back into school because he's too traumatised. Even an extra year at home and then try again next year might be all your son needs.

My heart goes out to you OP. I have been through this before with two of my children. The advice above is good. The Not Fine in School Facebook page is great. CAMHS referral perhaps but the bar for CAMHS actually doing anything is so high, that I’m not sure how much use it will be right now - still worth pursuing though as the wait for CAMHS and ADHD assessments are long.

My biggest recommendation would be to not force him in. The school with tell
you info this and it’s absolutely the worst thing you can do as the the experience of transitioning into school becomes traumatising. I’d get one your local SEND Facebook group and ask about different schools in the area. You may find that your child needs a change of setting. I sent my children to the school that I felt was most nurturing, not realising they have an
awful reputation for SEND support. There are other schools that would have been a better fit. Always worth trying a move, if you feel your school just don’t ’get it’.

Section 19 provision will be essential while you get sorted. The more evidence the better for an EHCP so I’d want a meeting with school and written plan of what has been tried and what else they can implement.

Hi! Just wanted to say we're going through something similar, although not as extreme with our 4.5yo. We also suspect ADHD.

One thing that's helped is doing what the teachers are referring to as a "soft start", it involves taking him in 10 mins early before the rest of his class arrive, to settle him into his classroom. We've been doing a visual timetable at home in the morning, with quiet play time with a parent built in around the usual tasks of eating, dressing etc. We often bring an item or photos from home to school with us in the morning (e.g. some photos of things he did at the weekend) for him to discuss with teachers, to help bridge the gap between home and school.

They have given us copies of resources they use, such as breathing exercises, emotions charts etc to use at home. They're also referring us to an early intervention service, but that might not exist in your area. I'm also doing some workshops on co-regulation.

We've also had bad meltdowns at school/vomiting/separation anxiety, it's really tricky! Sorry you are experiencing this too.

The same thing happened to my son when he started school. Turned out he was being bullied and the school literally turned a blind eye to it. I started homeschooling him 5 months ago and the difference is night and day. The last thing you want is to long term school trauma by forcing him to keep going - my son started to lose trust in me when i was sending him in. He told me that I couldn't love him if I would send him there to get hurt....and that hit me hard. Now he's feeling really happy and confident and has asked to go back to school so we're trying somewhere else. He starts next week! At 5 -7 they are still young enough that most people can successfully teach them at home for much less time than school demands and they get much more from it. Emotional wellbeing is far more important than society's strict views on kids being at school.

We send kids to school too early in the UK - my DS said he is just waiting and waiting to come home to me, and it's always such a long time to wait every day. My poor lovely (silly) boy.

This is excellent advice. You need to apply for an EHCP to get proper support for your son. You don’t need a diagnosis to get an EHCP, but it would be wise to peruse a diagnosis for your child if you suspect ADHD. The more your child’s needs are understood, the more support can be put in place.

I would also be checking how the school are recording your child’s absences. If they are being marked as authorised that is good. If they are marking as unauthorised, you could end up in trouble with non-attendance and end up in court. (I don’t say that to scare you, but so you can be aware for the future). A meeting with school is a good idea to get them on side as to why your son is struggling so much. A referral to CAMHS, if you can get seen by them, or another medical professional (maybe a GP), to state your child’s difficulties, the self harming, and the anxiety your child has will be helpful. Whilst GPs cannot sign a child off school in the same way they can sign adults off work, a doctors letter can still be helpful as evidence as to why your child isn’t attending if school are being tricky about unauthorised absences.

Thank you everyone, this is all incredibly helpful. I’ll hopefully have a bit of time this weekend to look over all of the suggestions you’ve made before the meeting with school.

I think I’m going to have to take some significant time off work. I just can’t see him going back to school this school year! He’s genuinely terrified. At bedtime tonight we happened to read a book that was set in a school, and he freaked out and said he couldn’t listen to it as it was making him sad and scared. This isn’t typical is it? It’s not just him being a bit lazy and not wanting to go to school?

Does anyone have any ideas about what has brought this on? Like I said he had 100% attendance until 5 weeks ago. Seemed to love school and has made some many amazing friends. It’s like a switch has flipped overnight in his brain.

I would get him assessed for adhd and asd and find someone who can do a sensory profile on him. Then you will be armed with knowledge which should help you to work out why school is so awful. Keep him at home in the meantime and dont make him do anything for a while until he trusts you again. Therr is a facebook group called not fine in school who will give good advice.
Whoops drafted thia last night. Looks like you have loads of good advice already

Hi OP, this is ringing alarm bells with me that the switch is so sudden. It makes me concerned that something has happened at school. I would definitely investigate this if you can. Your poor DS, little poppet.

Hi everyone,

So we ended up in A & E today as he had a severe headache and vision changes. Along with the sudden changes in behaviour the GP recommended we go there.

They’re pretty sure it’s neurodiversity causing all of the problems, but have booked an urgent CT or MRI of his head to rule out anything more sinister.

He seems to be getting worse. He can’t remember anything, can’t make decisions etc. Can kids have mental breakdowns? That is what it seems like, it it were an adult. Or is burnout a thing when they’re been compensating at school for so long?

Also, what do I say to school now? There’s obviously no way we can even try and get him in whilst he’s having medical tests. How do I make sure the leave is authorised and we don’t get in trouble?

Yes kids can have mental breakdowns.

kids with autism or adhd who start in mainstream often hit a point in reception or early in year 1 where they just don’t cope any more.

presumably he’s on a waiting list for assessment.

EHCP? Are you thinking of trying a different mainstream school or special school?

I’m sorry to hear this.

Your DS has a medical issue currently; this is what you should tell school. GP might be able to sign him off (or equivalent for children in school) whilst investigations are ongoing.

@Octavia64

thats interesting, thanks. Do you have any other information about it?

No he isn’t on any kind of waiting list, this has all happened in the space of 5 weeks!! He was absolutely fine since starting school in September, 100% attendance until 5 weeks ago.

But since he started refusing school he’s unravelled completely. How do I go about getting him on a list of assessment? We’d be happy to pay privately if it was an option too.

Gosh it sounds very upsetting, your poor boy. Have you looked at PANDAS, that can cause very sudden behavioural changes after a biut of mild illness (like a cold or sore throat).

https://my.clevelandclinic.org/health/diseases/23553-pandas-syndrome

Tell them he is ill, NHS are investigating, you will let them know when you know more. Until then he won't be going in.

I am a retired Reception teacher and SENCO. I would never have sanctioned restraining a 5 yr old, day after day. Please do take the PP advice about applying for an EHCP. Your local SENDIASS should help you to do that. He still comes under Early Years Service with LA, so contact them too.

Gp can refer for nhs assessment. Wait lists are usually years long.

private is possible and probably the best option if you can afford it. Can’t offer an opinion sorry as my dc was diagnosed as a teen and it’s a different process. Ask on the SEN boards for recommendations.

Autistic burnout - lots of descriptions try this one:

https://committees.parliament.uk/writtenevidence/117253/html/

anxiety generally an issue in autistic people as well

https://www.autism.org.uk/advice-and-guidance/mental-health/anxiety