To think if we can't get help, who can?

[drspouse]

DS (12) has ADHD and can be aggressive. We are seeing positive changes but he can still flip on the drop of a hat and last week threw something at me that made my head bleed, DH took him out to cool off, I had called the police and they had arrived meantime and this triggers social services to call which is why we do it.
Had a really patronising, I felt, call from social services today. They keep saying we've "refused services", throwing names around (names of people we may have met but we've met about 20 new people and some have actually rung DH or seen him not me, and names of services that we may or may not have been told about).

We have recently been awarded respite which is supposed to be a certain number of hours but none of the agencies can find us any workers and the SW acted surprised (despite there being a national care recruitment crisis). I contacted a mentoring agency - they charge £75/HR and we get minimum wage to pay the worker...

Both DH and I thought we were told we'd be getting a disability social worker. Apparently we should know he has the wrong sort of disability so no social worker.

We are fully aware that we don't always handle him well and the incident last week has also left me with bruises but it was the result of me telling him off for ignoring my instructions and he then pushed me against the metal radiator so I fell over and then he threw cutlery at me. I completely lost my cool as I was covered in blood and I wish I didn't because it just makes DS more wound up and more aggressive.

We've asked for help around staying calm and our mental health (because we are on edge wondering which day he will throw a kitchen knife or push someone down the stairs, and because we don't know how not to react when we are bleeding or bruised). We also want someone to help us with how we handle him and what to do when he's dysregulated. We were explicitly asked "what do you think you need" only to be told "we don't provide that" and then apparently we'd "refused services".

We've been told about 20 times to "call your GP". We've both been through their CBT course twice, me three times, and we're both on medication.

We are at risk of being seriously hurt. We are afraid for our lives and safety. But nobody can do anything about it. What are we supposed to do - wait till one of us is dead? Until he's in prison? Until he's old enough for us to say he has to move out and then he'll just be on the streets and on drugs but we might still be alive?

Hardly any of the residential SEMH or ASD schools are maintained or S41. Two of the ones we've looked into recently have just moved out of S41, one about a week before we enquired! Makes you a bit paranoid.
We can find a couple of schools that we think would suit him but they can be so choosy because they are so oversubscribed they are very unlikely to take him.

He is aggressive at school and it isn't meeting his needs in other areas either (especially his need for a social life). They ask us how to handle him (but then don't listen, or try it once, when really it takes months to make a difference).

In positive news though, third time of trying, he had a haircut today. He has been to this salon loads of times and they are very patient but the first time we tried he threw stones at the house, so I just walked off into town, he followed, then he tried to tip my chair over in the salon, but then managed to get his hair brushed. Second time he just hid under my chair but was calm and today he managed the cut!

I'm putting a 6 weekly cut in our diary as I think was probably more like 6 months since the last one which is why he was so anxious. When we used to go regularly he was much calmer.

This is generally our approach (as I've already posted - time 1 he digs his heels in at best, or throws something, or tries to kick someone, time 2 he does a little bit or refuses calmly, time 3 he manages it). It is on the whole successful and to move on in life you have to keep swimming - if he had his way he would never grow for example so he could keep wearing the same clothes as new ones don't feel right.*

• don't tell me "buy the same ones" or "get second hand". We do that. He has the neurodiversity sensory issues PLUS the ADHD novelty drive so the same clothes won't cut it, but are also the only thing he could possibly wear!

@drspouse
Well ASD schools are irrelevant here because as you’ve said before, an ASD school wouldn’t take him anyway as he doesn’t have an ASD diagnosis.

I should have included non-maintained schools in my list above of those schools that are obliged to take a pupil unless they can prove one of three specified reasons why they can’t. I think they’re a few that are SEMH.

At least you’ve identified some schools that would work. Until your LA has consulted with them, you won’t know for definite if they won’t take him.

No don’t worry, I’m not going to give you advice on clothes, or any other advice. As you’ve ignored my question about anxiety meds twice, and ignored advice from others, you’ve successfully trained me not to try and give you advice anymore.

OP just back to your original question of how to stay calm and de-escalate when he is violent/kicks off.

Have you looked into any meditative or Buddhist practices? Grounding techniques? There are people who manage to train themselves to not react to their body’s most primal responses eg. Severe pain, extreme cold… might be something to look into? I suspect such training requires a lot of time and headspace both of which must be in quite short supply for you but it might be worth investigating.

Also if you think that you responding to these incidents increases the dopamine hit he gets from them then I would suggest that calling the police to come to your home would not be a great idea as that is objectively quite exciting even for a NT 12yo! Instead though I would ring them and log the incident but ask them not to visit. This might help if you need to demonstrate evidence of what has been going on in the future.

my ND child is much younger but in your shoes I would at this point be prioritising dealing with the violence and temporarily abandon any ideas about him getting academic qualifications. What’s the point of getting a GCSE in maths if he’s simultaneously beating the shit out of you? He can get them later on in life. You do seem pretty focused on him needing to receive an academic education and honestly if he’s fairly bright and can already read and write then I do wonder what the point is, really? Why are you so determined for him to have that type of education? I’m not suggesting that he shouldn’t receive any sort of education and should just be allowed to sit around doing nothing (or just gaming) but it sounds like the skills he’s lacking most in are not academic ones. So why not just prioritise those? I understand there might be difficulties in finding the right school etc but shifting your focus might open new possibilities.

Sorry, have not been well, haven't been on much.

He isn't happy (if, kicking off and being aggressive is a sign of not being happy rather than a sign of it being more exciting than doing academic work) in his very low aspiration current school.
He DOES however get a lot out of achievement. He objects to doing new and hard things, but when he can do them he is very proud of himself.
Now, if he had aptitude for carpentry/football/gymnastics/gardening then that would be brilliant - he could find an absorbing hobby, join a group or a team, and get that sense of achievement.
But in fact his aptitude is for things like maths and science, which he grasps very quickly and feels great when he can conquer them. He also has dyspraxia and tends to like sport to start off with but quickly realise he's nowhere near as good as children much younger than him and get discouraged, so we haven't pushed that (it's a shame because it also burns off energy and boosts adrenaline). He likes quite a few sporting activities but does not have enough of an attention span to learn anything (e.g. he went to a climbing club and was fine climbing but wouldn't sit and listen to any instructions or knot training).

So it isn't a choice between "happy or academic achievement" as if an academic setting is bad for mental health. It's a choice between "no ambition and unhappy" and "somewhere else we haven't tried yet".

I am some of the way down the road of meditation/prayer/mantras etc. I'm not there yet, and I need to do more, but it does help. Unfortunately helping a bit isn't good enough with a child who gets rewarded by excitement - and I can't manage 100% calm. We have pushed and pushed for help for us in this area, and it's what we need most, but they "don't do mental health support for adults".

@Attention I saw you mentioned medication but thought you meant ADHD meds. Meds are complicated by the fact that he also has epilepsy and we must prioritise controlling that, which is up in the air at the moment, we are thinking we will next ask for a trial of non-stimulant ADHD meds as well as the stimulants he's on because he has many more struggles when the ADHD meds wear out. I think anti-anxiety meds are a long way down the road. There are good methods for working with anxiety in neurodiverse children (but I won't go on about them and the fact they are actually working for us because I know everyone on this thread thinks we should do everything for him he doesn't want to do, to keep him happy).

Nothing is quick. But not getting respite or mental health support for us makes it much, much slower.

And to the "why did you call the police" brigade - because they* *TOLD US TO CALL THEM.

Our DD is on Intuniv as well as a stimulant, it's extremely expensive but definitely helps with disregulation

Are you in the UK @Fluffytoebeanz ?

Yes

Not on NHS yet though

She gets tics on stimulants. With the non stimulant added she doesn't

That’s really interesting to know, because my DD also got tics (very badly) on a stimulant and so couldn’t take them.

There's an excellent book called The Parents Guide to ADHD Medication by Dr Peter Hill. It's very matter of fact and informative and really helped us.

We had to stop Medikinet completely due to tics and rebound. On the current stimulant she she's mild tics but non when combined

Thanks, good shout.

@drspouse
This is a useful article, especially the attached
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4755462/

Sorry image didn't load

My DD did try Intinuv on its own, it gave her bad side effects, as did all the ADHD meds she tried. This was via the NHS.

But then she also has autism and PMDD so that complicated things, and her severe anxiety & aggression was also related to those conditions.

Sertraline helped her anxiety somewhat, and I know of several autistic/ADHD/combined children it’s helped. However it never stopped giving my daughter an upset stomach, despite long-term use, so she came off it.

She’s an older teenager now. She’s got a fairly good handle on her anxiety now - touch wood - through her academic needs and ambitions being met, some individualised therapy & support, and importantly our ‘behaviour’ and how we support her at home. The aggressive meltdowns have reduced considerably, thank goodness, and home is a calmer place for all.

That's good news. Currently we have child who goes to school but spends all day in the toilets. She is the poster child for ADHD, has dyspraxia, attachment disorder, developmental trauma, and later trauma (thanks to incidents at school). The meds help, but a school that meets her needs better would help. Trying to make that happen now, and then a complaint about current school. I've had so many WTF moments. We wanted to move her earlier but she wasn't ready

@Fluffytoebeanz that’s tough, sympathies. Poor thing spending all day in the toilets. My DD also suffered trauma from incidents at school. Makes everything so much worse…

Regarding your DD’s attachment disorder, is she adopted?

Yes she is.

Thank you for these last few links. I didn’t realise there was a link between stimulants and tics, or that non-stimulants were recommended for children with anxiety. I’ll ask about this at our next appointment.

<solidarity OP>

More updates:
DS has been pretty ill (epilepsy, hospital, I was away with work but by the time I looked into changing my flight he was home again, my mum who can be really controlling was an angel and looked after DD but DH was glad to see her go). He's still quite groggy and clearly having his brain shut down almost entirely for half a week followed by the rescue meds (IV) not leaving his system for half a week has left him with problems following instructions, remembering things he definitely knows, and a few "stuck record" situations.

So we are obviously taking it gently and this week working on a few easy things like trying on t-shirts that may be too small and helping to clear the table before tea.

He was supposed to have a last trial session with a youth worker but surprise surprise didn't engage (we said he wouldn't) but honestly, since talking therapy is not recommended for children with ADHD we are not sure why they bothered.

School however have been a PITA. Had our ECHP review and they basically said they'll lie to get rid of him. We have told them ALL the things that are helping us at home and pointed out a few things he has said to us which suggest they might not be getting things right and they basically have refused to try anything different. Given it's a specialist school and he has a 1:1 and these are all things that work at home I'm not quite sure what else we are supposed to do.

One of the regional SEMH schools has been shut down (not the Wirral one, another one) due to abuse. It's a very scary time.

On a positive note we have 1:1 swimming for him which he really enjoyed at half term so we're hoping his brain kicks into gear for that, it's next week.

That must have been really scary. I am fully in the trenches for summer holidays. We have had 1 full day of screaming but it seems to be slowly claiming down. Almost at the end of the 1st week. Only 5 weeks to go.

I'm really sorry to hear @drspouse that your son has been ill and was in hospital. Also sorry to hear that the school isn't being helpful.

I said before and I said it again, it's not true that talking therapy isn't recommended for kids with ADHD. Please stop saying that.

And frankly, it's good that "they bothered", it's good that services are trying to help, even if it isn't the help that you want. You seem to measure progress in your child doing chores while expecting all the outside services to bend over backwards and not expect any 'compliance' from him.

Given that about 5 other agencies have tried talking therapies with him and he mainly hides, you'll forgive me for being sceptical. Same with eg art therapy at school. He spent 2 weeks hiding, 4 weeks colouring and it made no difference to his behaviour (which was why they wanted to do it).

And yes, being independent and having the resilience to do things he doesn't particularly want to (whether that's homework, helping around the house, or being in groups with other children/being away from us) IS progress. Becoming less anxious about doing new things IS progress. I'm not sure what you think progress is?

Given he's literally come home from school and said "I will kick off so I can go to the calm down room and do my colouring" I think they might need a different approach, don't you?

@drspouse I absolutely do forgive you for being sceptical about it working for your child.

What isn’t right though is you taking the specific and presenting it as a general rule. That’s not your place to do that. People could read that and believe you when talking therapy can be helpful for children with ADHD.

As has been said several times on this thread, your son has a complicated profile that includes ADHD, anxiety, epilepsy and being adopted. What works for children who ‘only’ have ADHD isn’t necessarily going to work for him. He’s not simply ‘a child with ADHD’.

Progress has many forms. I personally don’t see doing chores as one but see that you constantly mention that and what you’ve made him do. It’s not something I’ve focused on with my teens who have AuHD and ADHD respectively choosing to prioritise other battles (emotional regulation, school engagement and homework). My eldest is going off to university soon and has been doing their own washing every week for years at their own instigation, cooks and bakes, and has had a part-time job on and off for years. The independence came. They both help out with chores but do so mostly pro-actively. I’d have loved them to help out more but everyone’s energy was better suited going elsewhere. I appreciate that just my experience.

In all honesty though, if that’s what my son was saying when he came home from school, then I would be changing my approach and using bribery or rewards or even discipline to get my child to engage at school. I’d be teaming up with the school to provide a united front. Hopefully he doesn’t pick up on your disrespect for the school. I know it’s not great but it’s what you have. What do you say to him when he says that he kicked off to get what he wanted?