Trauma or Autism or Neither. Thread 2.

[StrugglesSadness]

@imip
@Scirocco
@Choconuttolata

Thank you with all of my heart to everybody who contributed to the first thread. You are all wonderful & have helped me through some very dark times.

Recap (Just) 11 year old son struggles with transitions & changes to routines. Extreme violence shown mainly towards myself but also his sister (7) (if he is able to get to her) & himself. Also runs from the home & has to be bought back by the police. Also absolutely trashes the home on a regular basis.

Social worker (who I asked for back in August) is extremely reluctant to put the paperwork through for an Autism assessment, despite school saying that my son 'masks' there & my son's counsellor saying that the assessment is needed, or to help us very much with anything at all really.

I agree with @Scirocco - SS definitely need to know the response from dad. At what point is ‘punishing’ a suicide attempt ever a good idea?! He really has no clue does he.

Scirocco I'm still feeling numb about it tbh. We (me & my son) had an absolutely horrendous time in hospital. His behaviour was off the scale. He was sooo distressed. I feel like I can't quite process what happened there, & yet we are back home, business as usual.

That's absolutely appalling, to leave you and your son and daughter with no actual support, especially after such a traumatic thing. I hope your son is physically ok at least.

Sorry just to be clear, his dad isn't talking about punishing the suicide attempt as such, he's talking about punishing his behaviour since then & in general, although when we were in hospital his dad was saying to me 'He can't keep doing this to us'

He is, now, Scirocco The Mental scars obviously, are clear, he's very very confused about what happened & he's 'Lost' a day & a half in his head, but physically he's fine.

That’s terrible - but CAMHs are involved and he has counselling?

Noras We had counselling through Barnardo's. It's finished now. I think we have been referred to CAMHS, I don't know who the people we spoke to at the hospital were.

Your GP should get a discharge summary which should say who saw you and what referrals/plans have been made, so if you contact them they should be able to give you information about that.

Scirocco Is that the same as the discharge letter that I have?

There'll usually be an initial discharge summary (probably what you'll have a copy of) and then a letter or more detailed summary that gets uploaded to electronic records and sent to the GP a bit later. Where I work, that would include a copy of any mental health assessment (the actual assessment, rather than just a note that it took place), and details of the action plan. Sometimes the GP will also get a note of the outcomes of actions taken in the intervening period, so that letter or summary can have slightly different information in it depending on if any additional action points have been raised.

An initial discharge summary should in theory have sufficient details about referrals, other actions to be taken, but in practice they're often quite sparse on the details because there's a lot of pressure on juniors to get them done as quickly as possible.

Thank you Scirocco There's nothing on mine about any next steps/referrals etc.

I am so sorry to hear this struggles. Did they have a MH nurse with you when you were there? IME also, you should get a CAMHS letter - some sort of safety plan in the house? Did they mention anything about an autism assessment? At this point, I would probably consider contacting PALS to help you complain about the referral process.

I have been in your situation, and I know it’s terrible, you feel like you are in free fall. But this sort of thing they cannot blame parenting for.

how is Dd? It’s difficult for the siblings also in these situations.

Thank you imip. No we met 2 people from the MH team & also somebody from Safeguarding. The SW came in for 10 minutes & told them that she is doing all she can & they didn't argue with her (this was on day 2, she didn't visit on day 1 & only sent one email in response to mine)

She blamed the counsellor for not sorting further counselling & just looked at me when I said 'I don't think that's his job, is it?'

Autism was commented on by several of the staff 'Does he have any kind of diagnosis?'

The nurse who saw us when we arrived did a Safeguarding referral, I showed her my bruises & she said 'I've been reading your file, you've spoken to your GP several times recently about this situation havn't you. Your SW seems fairly useless'.

My daughter seems ok. She keeps it all in doesn't she. Her dad had to step up & look after her when I was in hospital with my son, & he didn't do a good job.

They did mention a safety plan slightly, as in 'The thing that your son did, make sure that he can't access that anymore. No further changes needed'.

I didn't see your first thread but reading this. As a few people have said it does sound like a PDA presentation of autism and I know you said you'd been using PDA approaches

Are you on Facebook? The PDA support groups on there are very good and there are a lot of people going through the same thing.

Although school aren't seeing much it sounds like if he's masking at school it may be a massive demand on him and that's why you're getting the fallout when you're home.

I know it's no consolation - but attacking you may well be because you're his safe person - it's not safe to let go with his dad. Please don't believe he hates you.

Most PDA kids don't end up in mainstream schools and it's awful that he hasn't got an EHCP - did they even give you the needs assessment? Most appeals against the LA win - they just use it as a delaying tactic. A special school may be less of a demand for him, my 15 yo daughter is struggling even with that :(

I'm sorry it's so hard. My daughter isn't accessing education at the moment, but she's a lot calmer and 'nicer' than she's been for years.

Thank you ninja. I'm glad that things are better for your daughter.

I do find it very difficult to believe that he doesn't hate me. We were in our own room in the end at the hospital & I was trapped in there being beaten by him, I tell myself that he doesn't mean it, but it's hard.

The safeguarding at the hospital said that the SW should help me appeal/apply for a new EHCP (but I doubt that she will)

The SW is back to ignoring my emails, we had the whole of half term without seeing anybody, the GP has made me an appointment to discuss next steps but it's not until 2 weeks time.

I heard back from Beans. She emailed me so I instantly emailed back & said that I'd left about Ten phone messages but hadn't received a call back. She called me & said that with regards to an advocate I should try all of the people that I've already tried, & that she still hasn't found out if my son is on any waiting lists, so that was disappointing.

I have an appointment letter from the Paediatrician who my son saw re bedwetting last year. The Safeguarding at the hospital asked me what was happening with another appointment, so she's obviously chased this up... So after everything that has happened we have a new bedwetting appointment. And that's it.

My son keeps asking questions about what happened in hospital. He is finding all of this very difficult to process. He asked my why they didn't 'Do that thing where they leave a needle in your arm' instead of having to do repeated blood tests. I told him, gently, that he did have one in but that when he was upset he pulled it out. He finds this funny/confusing/doesn't seem to quite believe me.

Me, I still can't really get my head around what happened. I even considered asking the SW if she can come & see me & talk things through, as I have nobody to talk to, but I didn't, because I know that she will only ignore me.

I missed my call with 'Young minds' because we were in hospital & now I have to go through the process again.

My mum was angry with me for not text her when it happened, I didn't text her (or anybody apart from their dad) until the following afternoon. Then I was on & off with my phone because I was busy with my son. I needed her support but she was angry with me instead. I tried to see her with the children in the holidays, but we didn't manage it.

Schools head teacher said that the counsellors letter was 'Shocking reading & opened her eyes' (but they still won't do anything)

'Beans' can no longer support us because my son isn't on the NDD list.

The amount of support that we had (minimal as it was) is getting smaller.

I'm so sorry, @StrugglesSadness .

This SW seems to have caused so many problems here - her blocking of the referral process looks to be a big barrier...

What does the head suggest now her eyes have been "opened"?

Scirocco Nothing, they are just going to update high school with the latest news.

I can't speak to the SW. She snapped at me that she will put the NDD form through now then, even though it's half finished. (How the hell is it half finished? She's had 18 weeks since I asked her to be lead professional & it's not like she wasn't aware of it before then)
And she was unkind to me about how I struggle with eye-contact during these meetings. I told her that she is bullying me & I stand by that.

I don't know what to do or who to turn to.

@StrugglesSadness I'm so sorry to read all of this. Is there anyone, at all, who could help you look at privately funding a Neurodiversity assessment? Could you even do a just giving or something along those lines to fund an assessment? It just seems to me that you could really do with a thorough assessment in order to open doors for you. In many areas this isn't required and in my role we always say that often the diagnosis doesn't hugely matter - we treat the individual and not the condition, but it seems as though the diagnosis is the missing link for you and so important to get.

Stardust1985 No I don't think so. There's one person possibly but I asked them & they said no.

The NDD wouldn't change anything but it also would because we would know one way or the other & we could move forwards because I feel like we are stuck. Not least because my son is aware of it now & keeps asking if he has Autism or not.

And the last police report that we had still states my lack of discipline as the reason for my son's behaviour.

Also, I mean, the relationship between myself & the SW is well & truly broken but she could just do this & that would be one thing that she's 'done'. She includes all of the help that we've had over the years whilst we've had the Caffs as 'We've done this for you' but all that SS have actually done is Family solutions, & they only did half of the recommended visits. Since August. That's all we've had.

No NDD
No help clearing the home of/replacing broken items.
No counselling for me or my son.

Today she told me that she's constantly busy behind the scenes trying to find us some support. I said 'Well I wouldn't know, as you still aren't answering my emails or telling me anything that's happening, also you said at the hospital that you aren't sure what the next steps are, so yes, I am going to assume that nothing is happening'.

The counselling I get but why can’t you clear up your own home?

As I said to you before I think the social worker is showing conformation bias, she decided what she thought was happening at the beginning (parenting issue, bad behaviour, Dad is wonderful) and therefore is not seeing the reality (ND, challenging behaviour due to unmet needs relating to ND, trauma and abusive behaviour of Dad).

Social care are also very short-staffed and funding has dropped off massively so social worker is also likely over worked and struggling to find appropriate support resources locally. No excuse for her behaviour towards you though and not doing the ND forms.

The NDD assessment won't change that your son needs more support which they will have to organise, but it would help open doors to different avenues of support and help with managing the impact of school on his behaviour at home because school would be more open to making adjustments to help with this.

Have you managed to speak to Barnados about the CAMHS referral or the other CAMHS team we spoke about that the social worker spoke to? If not then get the GP to do it, they can refer now he is older both for ND assessment and CAMHS.

https://www.suffolklocaloffer.org.uk/news-and-developments/latest-news/changes-to-the-neurodevelopmental-disorders-referral-pathway-for-children-and-young-people-in-east-and-west-suffolk

If you need help writing a complaint for social care I can help you draft one, I think it is at that stage now and I know you are just overwhelmed by it all. DM me if you need to. Sometimes a written complaint that goes through the complaint team works better than a verbal complaint as it requires a detailed written response.

Sammie1990 I am, it's a combination of trying to get it sorted out before the next meltdown when he smashes up some more stuff, so it never quite gets 'done', & having to pay for new essential items like beds, so that I don't have the spare money to get a skip.

I'm doing it on my own as I have no choice but I thought that since SS were involved then they could help me get rid of broken beds, drawers etc. The 'big' items, so that I can get on with the rest of it. It doesn't matter, I was just saying that I've not asked them for much.