Had a meltdown at son's school. Embarrassed. Practical advice for ADHD needed?

[BrainLife]

My son almost certainly has ADHD. The school have to speak to me every week about his listening, impulsiveness, loudness etc. I'm struggling with his behaviour at home despite being what I would regard as a loving, attentive and patient mother. The school have raised concerns, I had a meeting a few months ago with safeguarding, SENCO was going to contact me, but they never did.

We were at school today and his teacher needed to talk to me about something he had done and he didn't want me to talk to her about it. So kicked me in the leg. He then had a meltdown and I had to literally grab him by the arm and get him out of there before he hurt someone.

It was embarrassing, and I think it all got too much when someone tutted at me. It wasn't helpful.

His teacher came over to help and was lovely, but I couldn't stop the tears and confided that I just didn't know what to do anymore. She was very reassuring and said she's always really impressed by the way I've handled his behaviour (at sports day, school trips etc). She said she has been raising issues with the SENCO and safeguarding but this never filters back to me.

I need to do something. Can anyone please guide me through exactly how I get the proper support for him (and me) so I can start being proactive? I feel like it's all so hard and all we ever do is talk about how he clearly had additional needs, but never actually do anything. I'm really, really tired.

Just what I was about to ask.

OP, squeaky wheel gets the grease, so don’t wait for school/SENCO to contact you any longer, just pester them relentlessly for help to move forward.

Also say you’re thinking of moving him to a school where he will get the support and help he needs. (Even if you’re not).

More of a promise than a threat but OK.

Ignore EHCP for now. Start DLA paperwork (just by ringing up tomorrow - you only need to give out name address etc - no information at all needed on why you are asking for EHCP) and email school asking for a SENCO meeting ASAP. During that meeting, ask them to refer to CAMHS.

You do not need a diagnosis in order to receive DLA but supporting evidence in any kind can be helpful. Ask school for copies of any "incidents" he had that they have on file. I also copied out emails from school where they detailed any of his behaviour or support they give him for work.

Once your head stops spinning you can start researching a bit more, contacting any local organisations that supports parents and carers. Baby steps. This can help inform further meetings with school, what to write in paperwork, how to start EHCP process etc.

Go to the gp tell them your concerns and tell them you want your child to be assessed using the right to choose path do not be fobbed off by gp telling you its down to school senco because gp can get the ball rolling and from what I've heard you get seen quicker aswell doing it that way.

@BrainLife

Things sound tough for you. Sounds like you are trying your best and I’m sure you’re doing lots right, so congratulate yourself for the positives!

A few things I think might help you:

• The Witherslack Group do regular webinars aimed at parents/carers of children with special needs, including webinars about supporting children with ADHD. I really recommend the webinars and signing up to their email newsletter https://www.witherslackgroup.co.uk/advice-and-support/adhd/
• You may find the ADHD Foundation helpful - this is the UK’s charity for ADHD. This is their website: https://www.adhdfoundation.org.uk
• The ADHD Foundation has this booklet about supporting your child with ADHD which I think you’d find very useful: https://www.adhdfoundation.org.uk/wp-content/uploads/2023/02/ADHD_ParentPrimaryCareBooklet_London.pdf
• BBC Bitesize has a SEND area online which you might find helpful: https://www.bbc.co.uk/bitesize/groups/c5vpkq13gpxt
• This explains all about Education, Health and Care Needs Assessments (this is the assessment that professionals do to decide if a child needs an EHCP (Education, Health and Care Plan) https://www.adhdfoundation.org.uk/wp-content/uploads/2022/05/Education-Health-and-Care-Needs-Assessments.pdf
• And finally 10 Frequently Asked Questions about ADHD which might be interesting: https://www.adhdfoundation.org.uk/wp-content/uploads/2022/05/10-Frequently-Asked-Questions-About-ADHD-Colin-Foley.pdf

It’s good to hear your son’s teacher is trying to chase up support for him & hopefully you can work well together to get the support he needs - best of luck!

It depends on your council as to how the system works.

DLA would not be something that you would be looking at this stage. IF its applicable (and its only the case in a minor of the most serious cases) thats way down the line. You'll struggle to get one without a diagnosis.

School SHOULD treat your child as if he has a diagnosis given the level of behavioural issues now. You do NOT need a diagnosis to get an EHCP. This is what you should be looking to get with the school WHILST seeking a diagnosis. EHCP first.

Set up a formal meeting to discuss this properly rather than in a situation whether he is present and it causes issues.

In terms of a diagnosis, some councils do not make any referals at all through school - they treat all children on the basis of need in the classroom. This is good to a point, but still leaves you without a diagnosis which you may need especially if you are in need of medication - in this situation you are basically you are on your own and have to go through the GP or go private. Other councils refer through school. My council area observes the child in school for a number of terms, makes notes and then that goes off to the health referal team and then you go through the formal assessment process. So its important to find out the process where you live - don't take what anyone says on here as gospel because it does vary massively.

Waiting times vary enormously from health authority to health authority. Some will fasttrack the more serious cases, but this still is a lengthy waiting list.You want to start the process as soon as possible - you really want to aim to get a diagnosis by the end of primary. That might feel like a long way off but if you are in a area where wait times are 3 years plus, it makes a big difference. (Remember, you don't need a diagnosis to get an EHCP).

If your school refuses to do an EHCP, you can arrange one yourself. Hopefully because the school are recognising a problem this isn't going to be an issue.

The biggest thing here is: DO NOT FEEL EMBARASSED. The school have seen it all before. The key is to engage and to work WITH the school as much as possible. You will get a much better relationship with the school than being resistant and in denial about it. You are all on the same side.

Look up local support groups and coping strategies in the meantime too.

This advice isn't necessarily helpful.

Find out how the system works in your area first. See my previous point about it varying massively by postcode.

My area WILL NOT accept referrals from the GP. So the GP will fob you off because they can't actually do anything.

All referrals HAVE to go through the school where I live - partly because a large part of the local process is observation whilst in school. A GP can't do this.

Hi @BrainLife i haven’t read every reply so apologies if this is already covered. People are advising you to go to camhs, but it actually depends where you live. In some places it is camhs who can assess, diagnose and help treat adhd. In other places it is community paediatrics. I would suggest googling your ‘local offer’ from your local authority as a start to getting this information. Good luck.

Everyone else has brilliant advice about diagnosis. I can't help with that because I'm not in the UK any more but I will say that I am reading this book at the moment and it is the most amazingly practical book I have come across for kids who melt down - I have a teenager with ADHD and a 6yo who is some flavour of ND.

https://www.amazon.co.uk/Raising-Kids-Baffling-Behaviors-Brain-Body-Sensory-ebook/dp/B0BTFRZ9YC/

I did have to make myself a cheat sheet (or copious bookmarks in the kindle version) - sometimes I lock myself in the bathroom while I read the relevant bit to remind me what I'm meant to be doing, but it's fantastic.

I could never understand why strategies would work some of the time and some of the time not - this explains it all because it's basically how far they are along the path to meltdown land. Different things will reach them at different points of it.

I have read lots of parenting books and barely any of them are as good as this one. I also REALLY appreciate that she puts in notes like "If this all sounds too much, skip to chapter 11" and "If this isn't working, go back to chapter 4 and reread it" - with links!!

There is also another great kindle book that I had the same feeling about several years ago - When Your Kids Push Your Buttons. I'm mentioning this one because it's only 99p, and it's definitely worth a pound. But the Baffling Behaviours one is the one I would suggest to read straight away.

DLA would not be something that you would be looking at this stage. IF its applicable (and its only the case in a minor of the most serious cases) thats way down the line. You'll struggle to get one without a diagnosis.

This is not true. None of it.

I've supported numerous families to claim their fair entitlement to DLA due to problems like ADHD. Money can be spent however you need, but in my case I get to claim Carers Allowance which is hugely needed because childcare is challenging for my son and he has a number of appointments. Prior to the age of 7 he had no diagnosis, no suspicion of one, and was not on the SEN list at school. I also use it to pay for private support like occupational therapy assessment in school, and also pay for aids etc.

Her son needs significant support in school and this would suggest he is also in receipt of significant support at home which would entitle him to DLA.

DLA is for any child who receives support more than an average child of their age. Diagnosis not required.

I say this really gently OP because I’ve been where you are, but you need to develop a thick skin and quickly. People will stare, tut and eventually verbally pass judgement. Let them, it’s awful but you have bigger fish to fry.

You have to be on it with everyone, every day. If you’re told the SENCO will call and she hasn’t rung by lunch, you ring. Then ring again mid afternoon and so forth. You have to make a real pain of yourself.

You have to shout the loudest to every service to get help. You have to, if you sit and wait quietly you will be forgotten and ignored.

Ask for feedback another way- a home school book for example, or an email so DS isn’t only hearing negatives. He knows what he’s done and already feels ashamed, he doesn’t need to hear it. Also means you can read it (and cry) on your own terms.

Evidence gather. Every phone call, every conversation or incident, get it in writing, every time. Follow up every conversation you have in writing as well.

Get a referral to CAMHS for the ADHD wait list, if you can, save for private in the many years it will take.

If you feel he warrants it, apply for an EHCP, don’t wait for school.

Apply for DLA, it’s currently around an 18-20 week delay for first claims, so start working on that. They’ll backdate the pay if awarded.

You will feel incredibly alone, but you are not. There are whole communities of us who have done this fight. I’ve just spent 3 years fighting (since pre school) to get DS 6 into a specialist school (I’m not saying you need one, just that I know what it’s like). Good Luck.

Completely forgot about this. Great post.

School meeting with SENCO should put you on the right path.

Don't do this. Don't blame schools for the destruction in school and SEN funding under the last government. Do be an advocate for your child, but this approach where I teach would just piss the SENCO off to such an extent, it would diminish your case (unfair maybe but true).
Look into EHCPs, but these are hard to obtain. It could be that the SENCO is already working on one for your child, but these are not in the gift of the school, it is the council which provides these. They require evidence.
Also, they might even be pleased that you're threatening to withdraw your child...

While you may need to go down these routes i.e
ehcP, it is also the case that medication could be a game changer. If you can possibly find the money for a private diagnosis, I'd recommend doing so.

Well that's stating the obvious, isn't it!

Agree that previous advice is just going to cause you no end of unnecessary problems.

I second that medication can be an absolute game changer in my experience of teaching children with ADHD.

Just want to say that it does seem to be a bit of a lottery depending on what school and in which local authority you are so I wanted to share our experience to contrast with the many poor experiences we hear of.

We had a much better experience than many. The school suggested an EHCP, and in parallel we pursued the NHS diagnostic pathway. The school steered us through the process and was very supportive. The Local Authority told us the EHCP would take 16 weeks, and it took 15. The EHCP was independent of any diagnosis, and was in place long before the diagnosis. It is working well and we have seen real improvements. The SenCo and school have both been amazing.

This is not to brag - just to reassure you that there are a range of experiences and you can take it one step at a time. If there is an EHCP in place, the school can access additional resources to support the child in the classroom as happens in our case.

If you are on a low income look into the help2save account, you pay £50 a month in for 4 years at 2 year and 4year anniversary the govt give you a bonus on what you have saved in that two year period.

I used it for DDs autism diagnosis, the NHS waiting list for ASD and ADHD is likely to be far longer than 4 years so if you can save up that'll help, and if you don't need it you have a big chunk of cash to use for other things.

Thanks, I'm already doing this

Have a look at:
https://www.send-parenting-balance.com/

And her tik tok in particular:
Kati3Walk3r2023

Lots of good advice and support, 3 neurodiverse kids of her own and been through everything with all the different professionals and processes herself.

Bloody hell, this is a good experience! Was it recent? If so what LA are you in if you don't mind me asking? If not comfortable where ish in the UK are you?

I've not heard anything like it. You can wait that long for an email reply in my LA, let alone a full EHCP I love reading positive stories like this about how it should be done.

2021/22 Dorset. The diagnosis was autism, and although I recognised he had behaviour problems and had been excluded at that point, I wouldn't have recognised his behaviour as autistic. Funnily enough though, with a suitable EHCP in place which is tailored to his autism he is back full time in school and thriving.

Don’t know if this organisation has already been linked :
https://www.adhdfoundation.org.uk/services-for-families/
Also https://chadd.org/for-parents/overview/
https://www.bekindtomymind.co.uk/parent-resources-for-condition/adhd/

I always think in a difficult situation solidarity with others gojng through the same helps. And never forget you’re doing all you can, with no training, no specialist qualifications and you’re doing a great job every day.

And may the tutters step in dog poo and get rained on.

Everyone else has gave amazing advise.

I just wanted to add to some previous comments, we haven't needed a diagnosis to get DLA. I also didn't send any evidence in for his first claim and was still awarded, got the renewal fine also with some evidence that time.

Somethings which have helped my DS;
Ear defenders
Movement breaks
Chew necklace
1-2-1 with TA within the LA local offer (ask senco about this)
Leaving school 5/10 mins before everyone else (this has been a game changer for home time)