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Original poster

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

244 replies

drspouse · 22/04/2024 20:38

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?

OP posts:
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Fluffytoebeanz · 19/06/2024 16:38

Attention · 19/06/2024 15:17

@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.

Attention · 19/06/2024 15:17

@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?

Fluffytoebeanz · 19/06/2024 14:38

Attention · 19/06/2024 14:33

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’ Wink and how we support her at home. The aggressive meltdowns have reduced considerably, thank goodness, and home is a calmer place for all.

Show quote history

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

Attention · 19/06/2024 14:33

Fluffytoebeanz · 19/06/2024 13:25

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

Show quote history

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’ Wink and how we support her at home. The aggressive meltdowns have reduced considerably, thank goodness, and home is a calmer place for all.

Fluffytoebeanz · 19/06/2024 13:38

Sorry image didn't load

To think if we can't get help, who can?
Original poster
drspouse · 19/06/2024 13:28

Fluffytoebeanz · 19/06/2024 13:23

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.

Thanks, good shout.

OP posts:
Fluffytoebeanz · 19/06/2024 13:25

Attention · 19/06/2024 13:17

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

Show quote history

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

Fluffytoebeanz · 19/06/2024 13:23

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.

Attention · 19/06/2024 13:17

Fluffytoebeanz · 19/06/2024 13:04

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.

Fluffytoebeanz · 19/06/2024 13:04

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

Fluffytoebeanz · 19/06/2024 13:03

Not on NHS yet though

Fluffytoebeanz · 19/06/2024 13:03

Yes

Original poster
drspouse · 19/06/2024 12:56

Are you in the UK @Fluffytoebeanz ?

OP posts:
Fluffytoebeanz · 19/06/2024 12:46

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

Original poster
drspouse · 19/06/2024 11:42

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.

OP posts:
Chaosx3x · 17/06/2024 22:23

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.

Attention · 17/06/2024 21:54

@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.

Original poster
drspouse · 17/06/2024 21:19

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!
OP posts:
Attention · 17/06/2024 21:06

@drspouse but as you surely must know, there is an obligation for schools - maintained and s41 anyway - to take children with an EHCP unless they can prove they can’t meet needs. And a lot of LAs fund placements for kids with EHCPs at non-s41 independent schools (mainstream or special) because the LA can’t find a cheaper option that meets needs, or that option is cheaper than the LA’s choice.

Your son is currently at a SEMH school, which hopefully aligns with his EHCP. If it is more or less meeting his needs and he’s not violent there then the LA would probably be reluctant to change it.

Original poster
drspouse · 17/06/2024 20:42

The fact that we can't get daytime respite and there's no overnight respite at all makes me extremely concerned about Section 20 and the like. I am also aware we'd have no input into his care, education etc.
Because he was adopted from overseas people have even suggested "sending him back". WFT?

We'd love weekly boarding, but where? There is no obligation to schools to take him - we are in an even worse position than in an area with overstretched mainstream schools - they can be obligated to take extra children, there must be a place for every child legally - yeah right, in fantasy land for us!

OP posts:
WhompingWillows · 17/06/2024 18:52

@PineappleTime

Just to answer your question, CSC is reluctant - as am I - to move DD1 out of area into a residential placement as she will be moving (back) into Y11 in September to sit 10 GCSEs. She is predicted grade seven and above in her exams. She has an ambition to study Anthropology at university so she can become a museum curator.

WhompingWillows · 17/06/2024 18:43

PineappleTime · 17/06/2024 18:30

I don't know whether whompingwillow's DD is blind as I haven't followed all the posts on the thread but no you are right I doubt a hostel would be suitable in terms of accessibility. I'm not sure why a suitable residential placement hasn't been sought. I have been in that situation with a YP before when we did a nationwide search and had no interest that we were able to proceed with but that's very unusual. Whompingwillow refers to a lack of suitable foster placement but residential care is different and set up to care for children with higher needs.

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Yes, my DD is registered blind. She is now 16 and she lost the majority of her sight when she was 11 due to her exposure to heroin, methadone, cocaine and cannabis (plus the alcohol) in utero. Apparently, according to her consultant ophthalmologist, it’s methadone that causes the most damage. DD’s optic nerves have been severely damaged. She has a little functional vision in one eye but none in the other; she also has multiple eye conditions which mean that she has no depth perception or peripheral vision in the ‘good’ eye, plus she has a condition which affects her processing speed as the messaging between her brain and her eye is compromised.

WhompingWillows · 17/06/2024 18:35

PineappleTime · 17/06/2024 18:15

The local authority have already accepted that she needs to be housed but you can't magic up a suitable placement by saying 'well she's homeless now, your problem'
Social care will never intentionally place in a hostel because it's very risky. But now that she's 16 and presumably at the end of year 11 housing could place her in a hostel. @WhompingWillows i don't know if you're aware of that. The options for a homeless 16 year old out of year 11 are somewhat better than for an aggressive 15 year old in her GCSE year as she couldn't be placed in a hostel and no foster placement will take her. Residential care might have been an option if you could have got them to agree but it's probably too late.
if you are ok with her being placed in a hostel (and no judgement if you are! That wasn't a loaded statement) you can refuse to have her back the next time she's arrested for assaulting you or her sister. Emergency housing is available, though it's short term and shit. But once you've got her placed somewhere, anywhere, she's more likely to get into a slightly more decent provision.

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@PineappleTime

My AD1 is also suffering from a rare autoimmune disease - and takes a chemo drug weekly - that has meant that she has missed eight weeks of school in Y10 and many, many days of school in Y11. She should have been taking her GCSEs this time round but she refused and everyone (Child Protection plan) agreed that she could resit Y11. There is no way AD1 would last five minutes in supported lodgings or a hostel. She is too vulnerable and is extremely executively dysfunctional. All the professionals acknowledge this. Also, she is a very academically able girl and is at a selective grammar school so everyone wants to see her do well. I will try to do my best to grind through and see her to the end of her education as I am fully aware that the cavalry is not coming. It’s fucking hard though. Especially with the worry of the possibility of a future false allegation.

PineappleTime · 17/06/2024 18:30

Attention · 17/06/2024 18:25

What I meant is, would housing really put a registered blind 16 year old in a 'standard' hostel with no additional care?

I don't know whether whompingwillow's DD is blind as I haven't followed all the posts on the thread but no you are right I doubt a hostel would be suitable in terms of accessibility. I'm not sure why a suitable residential placement hasn't been sought. I have been in that situation with a YP before when we did a nationwide search and had no interest that we were able to proceed with but that's very unusual. Whompingwillow refers to a lack of suitable foster placement but residential care is different and set up to care for children with higher needs.