Feeling at a loss with the rage inside my ADHD 8yo

[Quokkafeet]

Emotional regulation has always been DS's main issue. It was why he was assessed in the first place as from toddlerhood we have struggled with it. Now he is 8 and was diagnosed with both autism and ADHD in December last year. I struggle to unpick what aspects of him are the autism and which are the ADHD.

He's in y3 and is very sociable. Very chatty to the point he doesn't know when to shut up! Has friends, generally well liked though as he gets older he has more and more conflicts with friends, I get daily reports of this from his teacher and he apparently goes to find her in the staff room regularly during breaks and lunch to sort out conflicts. I believe this is due to the rigidity of his thinking - he can't manage any flexibility of rules in the playground for example, just can't let anything go.

Anyway we're currently experiencing huge amounts of after school rage, which had been better for the last year or two. He actually smashed a glass panel in one of our internal doors yesterday in a rage and it was as though it needed to happen for him to realise that he was really struggling. He emptied his piggy bank in front of me screaming to make him pay and even screamed "find something I can hurt myself with" 💔

He has had therapy before (prior to diagnosis) from around 6 to 7 years old. The aim was to address the anger though all it really did was validate our suspicions he was ND.

My question is, what do we do with this behaviour? It's as though the red mist descends and he is no longer aware or in control of what happens, and it is happening daily. He regularly hits me and his older sister, open and slams doors again and again, kicks the car doors etc etc He will then feel intense shame and turn the aggression back onto himself, hitting himself in the face with whatever he can find.

I keep being told he is fine in school despite all these little conflicts. Absolutely no sign of this physical anger. He wears loop earplugs plugs, he is allowed to get up from the carpet when he wants during input. I feel I should have another meeting with his teacher, I just don't know what I'm actually asking for. Just so mentally exhausted by it all.

Does he have an ECHP yet @Quokkafeet?

He doesn't have an EHCP. I asked at the last target review meeting if they felt he would be likely to need one in future and they said they didn't think so - he's achieving the expected outcomes for his age and he's managing without individual adult support within the classroom.

Annoyingly, he used to have sensory circuits and now doesn't - the ta that did it left and hasn't been replaced. I asked if he's having movement breaks and he said no - he told me all this during a conversation after last night's meltdown but he won't think to tell me this unless prompted. I have had to have a conversation with his teacher before when she said she asked DS if he wanted a movement break and he said no. I said could she please just send him because if he's busy, or he doesn't want to look 'different' to his friends, he will say no. The other day she told me he's usually 'fizzy' in the afternoon so I'm a bit annoyed that she didn't mention he isn't having any movement breaks!

The after school rage you describe is known as the coke bottle effect. It indicates there are unmet needs at school. DS is ‘fine’ at school. The school are either ignoring the signs, not seeing them or seeing them but not recognising them for what they are. If school was easier, home life would improve.

Request a meeting with the SENCO. What support is the school already providing - for emotional regulation, social interaction and communication, and wider support? What have they tried but hasn’t worked? Have they approached any outside agencies for advice?

Request an EHCNA yourself. On their website, IPSEA has a model letter you can use. Ignore the school saying DS doesn’t need one.

Has DS had a sensory OT assessment?

Has DS had a SALT assessment?

Does DS take medication?

Thanks, yes we're familiar with the coke bottle analogy and have used this with DS actually.

Sometimes I honestly just think the school doesn't believe how bad it is at home or the think we're exaggerating the kind of incidents they see at school when in reality it's on another level entirely.

He isn't really accessing any support for social interaction. For emotional regulation, he's done Elsa (did nothing and he only had it for 4 weeks). He is allowed to come in from break if needed. A lot of his support is him being 'allowed' to do things or having things available on request but I don't think this actually helps because it relies on him being more in touch with his emotions than he is and having more control than he does. He is also very conscious of appearing different. He is massively self conscious. To the extent wouldn't wear new school shoes in case other children didn't like them (they were just a slightly different style of plain black Adidas trainers to the last ones)

He hasn't had an OT assessment but this is something I'm looking into - a friend of mine works in special and said she would get recommendations. I do hear it's expensive, but probably worth doing.

Never had a SALT assessment but his speech is good and vocab very good. Would this mean he doesn't need one?

He's on the waiting list for medication, could be another 8 months.

Thank you

If you are going to seek an independent OT assessment, make sure it is someone with the ability to look at the sensory side of things. Not all OTs have the training, qualifications and experiences to appropriately cover sensory integration. Also, if there is a chance you might go down the OT route, make sure they have experience of writing reports for SENDIST in case you need to appeal.

I appreciate you may not want to, but if you want suggestions feel free to post a rough location or if you are willing to travel further afield (many do for a good OT assessment).

SALT is about far more than the physical ability to speak. For example, it can support social communication and interaction as well as emotional regulation.

That is all so useful thank you so much!

The waiting lists for sensory assessments on the NHS are so long I think we will just pay for one. He needs it now, I feel this is such a crucial point in his education and development.

I did not know that about SALT!

Would you mind if I pm you with our location, in case you're able to recommend anyone?

Of course you can PM.

Not all ICBs commission sensory OT via the NHS anymore. Even when they do, it is often quite limited. It is similar with SALT, NHS SALT often has a very limited scope compared to what SALT can actually cover. If you get an EHCP, the EHCP can cover more support than is typically available via the NHS.

How are DS’s eating/drinking and sleeping?

Do you have any sensory equipment at home?

I will pm location but will answer other questions on here incase this helps anyone else.

My concern with waiting for funding attached to EHCP for this is that I know there can be a long wait for EHCP even if we get one.

DS has historically had terrible sleep but now sleeps 830/9pm until about 630. He sleeps through. He only started going to sleep himself (so I can turn the light off and leave the room) about 6months ago and honestly think this is the best he's ever slept in his life. Finally!

Eating is up and down. He isn't generally picky, usually eats what the rest of us eat and we eat well. We do find that he occasionally goes through phases of eating very little, refusing meals with 'bits' in and demanding plain pasta or toast, and this usually coincides with him having a bad week in other ways. I think it's a control/ comfort thing. I'm not convinced he drinks enough during the day at school.

Sensory equipment at home - trampoline, gym ball (I use these in combo sometimes), he has a nesti (sensory sock thing) but never chooses to use it. If he's very wound up and I suggest it he will use it and sometimes it works. We also have a gym bar outside he likes to hang from.

You don’t have to wait for the EHCP. You can look at additional support now and request an EHCNA. It doesn’t have to be one or the other.

The eating difficulties sound like they could be sensory related. Some people find their ability to tolerate sensory input is lower when there is other stress (be that physical stress or psychological/emotional stress) on the body.

If DS’s drinking at school is a particular problem, can you meet DS with a drink after school. Some people find their DC cope better when met with a drink &/or snack straight after school.

If DS likes the hanging on the gym bar outside, if you have the space inside, you could look at sometimes like one of the southpaw doorway kits or the gorilla gym or even just a pull-up bar. If DS likes hanging, he may also like swinging.

Hi OP, I have a very similar child! It sounds like you're already doing the right things. DD finds our next door neighbour's trampoline very regulating (fortunately we are good friends with the neighbours - we did use to have our own but now we use theirs and we have football space instead and a swing/tyre swing/trapeze bar/monkey bars that they use sometimes). You might try a weighted blanket. They're more practical than the sock.

Regarding the explosive behaviour, we found the following useful around that age:

1. Play therapy (sometimes schools can refer but we found our own play therapist on a website called the Owl Centre).
2. NVR. There are lots of resources online (search Yvonne Newbold) and we ended up having some online sessions with a therapist from New Leaf NVR. It got me and DH on the same page regarding managing the more problematic behaviours, up to and including grabbing knives out of the kitchen, punching us, kicking our shins, smashing two TV screens and three glass doors (these behaviours are only very occasional now as she's got older, and milder: they peaked around 7-9). The secondary school has been v helpful and put her on an anger management course in year 7 although it was so carefully named and handled that to this day she doesn't know that's what it was... The charity Capa First Response is also really helpful.
3. The book "10 Days to a Less Defiant Child" (Jeffrey Bernstein) gives a lot of strategies. I first read it when DD was 6 or so and I am still using them now she is 13. Lots of people will recommend "The Explosive Child" but I didn't find it was as practical with strategies.
4. Oddly enough when DD finished her 3 or 4 months of play therapy it was because she started a music theatre class that clashed but that seemed to really help her. There were a lot of other ND and generally energetic and dramatic (obviously!) kids. She doesn't do so much of it now but she did 6 stage productions between the ages of 9 and 12 and the discipline, working with others and encouragement to shout dramatically on stage in a structured kind of way seemed to work well for her (a particular highlight was seeing her rushing onto stage in Les Mis ready to storm the barricades - some kids you don't really appreciate what they've got to offer as obviously 'storm the barricades' type energy can be a bit of a pain when you're trying to get them to learn maths quietly or whatever...!)
5. She now plays a lot of football instead and again being in the "team" seems to help her.

Regarding the EHCP, I will post a link to the support thread that I started. Professionals and local authorities will tell you all sorts of stuff but the bar to be assessed is much lower than they like to pretend.

Don't forget that secondary applications aren't all that far off for you and the EHCP gives you the ability to name a school that you aren't in catchment for. DD attends a school in a neighbouring borough as I was underwhelmed with what was on offer in our borough.

If I can give you one piece of advice, it would be to throw all your energy into getting that year 6 to year 7 transition right.

Oh, DD was always "fine in school". She masks like a champ. As teachers get know her better, they get an inkling of the behaviours though.

We were very fortunate that both the primary and secondary believed/believe us when we describe what happens out of school. I'm a teacher though which I think helps.

https://www.mumsnet.com/talk/special_educational_needs/5484488-ehcp-support-thread-no-6?page=3&reply=151556095 here you go

Thanks for starting this thread! Lots of great advice, I’ve ordered the book you recommended @Needlenardlenoo

Something we are struggling with knowing when to use the low demand approach and when to have a firm boundary. It feels like the defiance, avoidance and rudeness is getting out of control. And no consequences seem to work, we just see them explode with rage if they’re challenged on anything.

It's really tricky but I think with these kinds of children all you can really do is decide on a case by case basis how important things are to you/overall.

For example, my minimum when my child is visiting another house is please and thank you and flush the toilet. As those are my minimum when hosting a visiting child. DD got to the stage of parroting this to me before a play date "I KNOW MUM, please n thank u and flush the loo" and I haven't had any complaints from parents of friends (I do check).

I also expect DD to sit at the table and eat with cutlery when we're at my (older, more formal and traditional) parents' house (actually it's mainly my mum I'm thinking of - I suspect my dad isn't so fussed). But we don't enforce that at home as we'd rather she's eating and she's easily put off and dislikes eating with others. And my parents have adjusted. My sister and I would have had to ask to "get down".

Thanks so much for the support on this thread and it is good to hear I'm not alone.

Since making the first post I've had a chat on the door with the teacher and also spoken at length to DS and what I've pieced together is that ALL accommodations that were being made for him have been quietly removed over the course of the last term. So while I was thinking he needed more support, even thinking in terms of an EHCP, I believe what he actually needed was the same support we thought we'd got in place, put back in again.

I have also heard from a TA at the school who is a long term friend of mine that when she questioned why DS wasn't in the group of kids from his class she saw doing sensory circuits after lunch, she was told 'he doesn't want or need it. We just don't see the behaviour they see at home '.

Guys, I'm exhausted. I feel like it's groundhog day and all it does is feed back into that niggling voice that it's just me, or at least that everyone else thinks it's me. I thought him having the diagnosis might put an end to that and it hasn't and I have to remind myself that he was seen by three different professionals and was in clinic for an hour to get that diagnosis.

I was told at pickup yesterday that he is increasingly restless in the afternoons and can't sit still, isn't completing independent work. How can't they see all this behaviour is a result of taking these accommodations away?

So I'm going in for a meeting. Again. Wish me luck! It's just so bloody hard sometimes isn't it.

I just wanted to add that I absolutely struggle with this too, particularly when grandparents don't understand at all why things like smashing a door doesn't result in all pocket money being taken away, all tech being taken away or not being allowed to go to a friend's house at the weekend, which were all suggested. And I question it myself, all the time. It's hard sometimes to unpick which behaviour is deregulation or seeking control and which behaviour is a choice because like all children DS will occasionally just make bad choices. We can't get it right every time.

Good luck OP!

Write notes of the meeting and email to to the staff present afterwards as a record of the meeting.

Still request an EHCNA.

Oh wow that is so frustrating! Really hope it’s a helpful meeting and they can put things back in place. It seems like a no brainer if it’s already happening for other pupils!

It’s very draining to feel like a pushy parent.. when actually you’re just advocating for your child. You’re doing the right thing. Our OT said it’s likely things will manifest increasingly due to increased learning demands in school as they get older. Which we’ve seen, along with reduced ability to mask.

I’m not prepared to let my child deteriorate to the point of school avoidance before they realize they need to do more to help.

This. I would try and do it today, if you can. The sooner you get one in place the better.