Fuck me I am so fucking exhausted

[UpToMyEye]

DS(6) has some as of yet undiagnosed additional needs
Adhd, possibly more, massive sensory seeking behaviours which mostly manifest by screeching and screaming all the time

School is hard for him, really hard
Each evening he’s a screaming, crying, violent mess, by Thursday evening he’s completely unravelled, Friday he’s ok-ish as he’s happy for the weekend, but the weekends are hell
Until Sunday night when he’s adjusted and calm, then back to it on Monday
And so the cycle restarts

I am so exhausted

I have three other children besides him and our entire life seems to be spent trying to prevent or trying to bring him out of a meltdown

No purpose to this post really, it’s been a horrendous day and I’ve just finally got him into bed (only possible due to melatonin) and I have until he gets up at 5am to exhale before we start the screaming and tantrums

Fuck me this is hard

Thankyou all so much for the kind words and sympathies to everyone that’s in the same boat

We were rejected by CAMHS twice when referred by the GP (although he did prescribe us the melatonin on the back of this) but after a few incidents in school they have now got on board and we have been accepted, we’re just waiting for our first appointment, so we are finally getting somewhere
Although he has no additional support in school, they say they can’t without a diagnosis? Is this not correct? I have been saying to them for a while now he needs extra supervision particularly at break and lunchtimes as he has seriously injured himself (broken nose) and also several times hurt others (busted lips etc) but they say they don’t have the staff for this and ‘can’t guarantee someone will be watching him at all times’ in their words

We have weighted blankets, chewy toys (he’s a chewer) fidgets etc, his sensory needs seem to be more gross motor things - so he climbs and jumps/hops around constantly, twirls and constantly makes noise with his mouth, if he’s not screaming or talking he’s humming or if not he’s chewing something (sometimes his hands until they bleed)
He likes very sour or strong tasting food so he needs a lot of oral input it seems

I know all of you say no screen time but honestly he spends most of his day on his iPad with his headphones on - this is the only time he isn’t kicking off most days
Could this be making things worse?

Thank you all so much for the advice, I am taking notes!

OP - it is completely incorrect of school to say no additional support without diagnosis.

Support at school and being placed on SEN register is based on needs and not on diagnosis. It is a concern if the school has said that. There is a great charity IPSEA that has lots of guides and advice on it.

His behaviour at home would strongly indicate his needs are not being met at school. What are the school saying about his behaviour?

Unfortunately many schools just view ADHD kids as ‘naughty’. Many school have very little, if any knowledge, of ADHD or even ASD. Please do not assume they know better than you ( I did this and really regret it - I had been brought up to respect authority and believe schools know best etc - been a big wake up call for me). Unfortunately in many schools you need to push and very strongly advocate for your DS. Start keeping a diary of what is happening at home, keep a diary of anything that school mentions to you.

Screens - it really depends on the child. For some SEn children they are a soothing mechanism ( but still may need to be limited). My DS certainly does need physical exercise.

His sensory needs seem quite pronounced - again please please push for an Occupational Therapist assessment. They can help with identifying the type of sensory need and the way those needs can be met ( for example my DS isn’t helped by fidget toys at all - he needs deep sensory input ( doing press ups for example). Start requesting an Ed psych assessment now.

Please also be aware waiting lists are extremely long at the moment - another reason not to let school make that comment about diagnosis.

Please do head over to the SEN boards - loads of knowledgable posters there. Sadly as a parent of SEN child you have to figure this all out for yourself.

Ps I am in now way saying your DS has ADHD - he may not. It is probably helpful even as a parent to look at his ‘needs’ and how he presents ( my DS has ended up diagnosed with other neurodiversities not just ADHD, he was also assessed for ASD but wasn’t quite over the threshold).

I wish you and your lovely son much strength ( and I know it’s sometimes hard to see them as lovely, but he is in there just overwhelmed by having to cope with life).

Although he has no additional support in school, they say they can’t without a diagnosis? Is this not correct?

This is in no way correct. He should be added to the SEN register and receive support at “SEN support” level. At this level they should be putting in a graduated level of response to help meet his need - such as 1:1 nurture/feelings time, sensory breaks, small group interventions and so on. No child needs a diagnosis to access this!

Given what you’ve described, it sounds like your son could also benefit from an EHCP as the support he needs is ‘additional to and different from’ the provision ordinarily provided in school. Your SENCo should already be writing the application! But if for whatever reason school don’t want to do it, you can submit a parental request.

Just to say re screen time I don't believe the rules necessarily apply to all kids. My son's autistic and actually seems to regulate by it, when he gets too overwhelmed/high/looks like a meltdown sometimes 10 mins of paw patrol makes all the difference. Don't feel bad about it, you're in a hard position and you do what you can to get through.

"Although he has no additional support in school, they say they can’t without a diagnosis? Is this not correct? I have been saying to them for a while now he needs extra supervision particularly at break and lunchtimes as he has seriously injured himself (broken nose) and also several times hurt others (busted lips etc) but they say they don’t have the staff for this and ‘can’t guarantee someone will be watching him at all times’ in their words"

This is completely unacceptable. Contact IPSEA for advice:
www.ipsea.org.uk/advice-line

There is also your local council's SENDIASS service (if you haven't yet contacted them).

I agree that an OT assessment would be helpful - I don't know how you get one though, can a GP refer or does it have to be through school?

OT assessment definitely. It doesn't exist on the NHS here. It might where you are, but the waiting lists are long.

He might benefit from a trampoline, or an indoor swing or hammock. Swinging can be very grounding. Look up Gorilla Gym and their various attachments.

Why didn't you post this in SN and get good support?

Phone and chase camhs. Push politely but hard saying he should've been seen before if they hadn't of denied before.

Get him seen by Paed privately who does your local private AND most importantly nhs diagnosis. He'll get medication and then this gives you more bargaining power when he's then seen on the nhs.

Start fighting. Start recording Times and dates of every single person you speak to like it was a legal case.

School are pulling a fast one on you.
Write an email and request everything in writing. Ask for an appointment with Senco immediately. And an appointment with the EP (Educational Psychologist) this will take ages, ask then the fast track him because they should've done it before.

Call the Coram's children's legal Centre they have a legal advice line and accept legal aid.

There is a template letter that can be sent to schools which puts the fear of God in to them but I can't remember what it's called. I'll link it here when I remember.

He sounds very different to your run of the mill child I would definitely be pushing the school for proper support! And yes if you can afford private consults go down this route as I'm guessing the more you can do earlier the better.

I think sometimes as families make little changes to make life easier for everyone, they all happen so slowly but build up and up gradually that writing it all down like that will hopefully help you see how extreme all this behaviour is and help you push for more help from services.

This video from Dyslexia association helps parents prepare for general SEND assessment meetings not just dyslexia ones.

Schools are obliged to make their best endeavours to meet a pupil’s SEN under s.66 CAFA 2014. This is not dependent on a diagnosis.

Do apply for an EHCP, a diagnosis isn’t required. IPSEA have a model letter on their website. An OT assessment can be part of the EHCNA, if the NHS can’t or won’t assess within the statutory timescales the LA must commission independent advice.

If DS cannot attend school because of his SEN the LA are required to provide alternative education under s.19 of the Education Act 1996.

It's tuff my 4 year old son was diagnosed with type 1 diabetes and is in the process of having a diagnosis of ass and adhd too I've got one other child who is in his 20s now so all my time is with my ds the school only allow him to come in half days that makes him worse we are waiting for an ehcp and pediatrician appointments and dla xx

Sorry that was ment to be ASD not ass lol 😂 xx I'm tired 😴 ill blame that lol xx

sharonden the school are illegally excluding DS by only allowing him in for half days. You don’t have to let the school continue to unlawfully exclude DS.

@wetrainday

This sounds so hard and sad, sending best wishes.

How about something like a dog? I have seen a lot about dogs used as actual therapy for children....and autism dogs etc too. Maybe might help him?

That's really not fair on a dog! Obviously the poor wee lad can't help it but any pet may be massively distressed by constant screaming.

I can only begin to imagine part of your exhaustion, we had only a fraction of the problems you had but most were at school. Younger DS had an Early Help Assessment process completed when he was in y3 as he had so many challenging issues in school and which also dramatically impacted home life - this triggered social services calls, a parenting course, asd, adhd and OT assessments and an individual behaviour plan. The school had to request this but they had to ask our permission to do this - have a look at your local authority Local Offer as I think all LAs have to have this in place so could you ask your school to do this? The reason I say school is the GP said they could do this but school reports would form a big part of it so they said school would be best placed to do it. This is not the local service we accessed as not wanting to be outing but this might give you an idea. It's not just about the obvious safeguarding concerns but about children needing support or schools regardless of diagnosis (or not), don't be scared by asking for it.
www.barnet.gov.uk/children-and-families/early-help-children-young-people-and-families