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.

Struggles, which county are you in? Feel free to DM if you'd rather not put it here.

Stardust1985 I'm in Suffolk.

I'm just wondering if there is anyone in your area who does pro-bono autism assessments. I will ask on a therapy forum I'm on and see if anyone knows of anyone.

Have you tried referring through right to choose for autism? It’s on nhs so free.

id also send a copy of this thread yo
uour local mp

sending you so much love

You do matter of course you do your their main caregiver. I was not trying to suggest you don't it's just that to get the help you want I think you switch your narrative to your daughter. I think if you tell the social workers manager that they are failing to safeguard your daughter by getting you the help your son so desperately needs it will land better than begging them to help your family as a whole.

Not much of an update because I'm useless so still havn't got things sorted.

We cannot have a new social worker under any circumstances.

GP said the only blood test will be a Thyroid test but it's unlikely to show anything due to my son's age but I'll still get it done.

I have a phone appointment with a Family solicitor on Friday.

Waiting for Women's aid to ring me back.

Waiting for local CAMHS to ring me back.

My son has been ok.

Can the counsellor write a letter to inform current symptoms and views that an assessment would be useful? You could then use that to help get an ASD assessment eg show it to social worker and GP.

I agree with tootiredtospeak re using stance of a minor child.

Noras I said about my 7 year old several times. Her arguement was that they aren't 'Doing nothing' because we have the CIN plan, & then she listed all of the help we've had since he was 5. Because that's relevant now.

I tried. I did. Honestly I tried.

The NDD conversation was absolutely ridiculous. She said initially that the NDD referral had now been put through... however she then said she isn't sure if it has, & THEN said that if I 'refuse' this blood test then it's going to be an obstacle towards putting the NDD form through... When I said 'But it might have been put through already? Or is it now dependant on a blood test?' She said that she will get back to me.

When I asked if it is acceptable that I've been waiting for the Social worker to put these forms in since the start of February, she said that she cannot comment.

The Social worker has had a copy of the counsellors letter since February.

The letter states that my son seems extremely young for his age (& his reasons for saying that) & that his recommendation is that my son has long term drama therapy or psychotherapy in person.

It says 'He needs to be assessed for Neurodiversity for the following reasons. He cannot handle any change in routine, he has Sensory overstimulation, Echolalia (repeating words and sounds) playing repetitive games and his own made up routines. In addition, he has developed masking strategies at school so that his extremely difficult feelings are not being seen or heard'.

The GP yesterday said to just get this blood test done 'To get her off my back' (he was the same one who I spoke to before) & said that then we can have another call.

I am trying.

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

In case the GP isn't aware, as of March it looks like they have access to a referral form? Unless the SW has something in place preventing them from doing it, the GP might be able to do the referral.

I know, Scirocco. They won't do it whilst they aren't sure what the social worker is doing. We need a 'Yes I will' or 'No I won't' from her because she's blocking anybody else from trying.

Yesterday I said to him 'As far as I can see, she is just putting obstacles in the way because she doesn't want to do it. But now there is this question mark over if it's been done or not'.

Hi
I haven’t read the whole thread but just tell him she’s not doing it. He won’t check. I mean this in the kindest way, what does good support look like to you? I ask because I’ve worked with many families who say they ‘aren’t getting support’ when actually they are just getting the wrong kind of support or because things aren’t changing they feel they aren’t being supported when actually they are. The help from services is far from perfect but it can become even tricker when too many services or involved or there is not a clear plan in terms on what needs to be done and who is doing it. Ultimately this is your family and your life if you feel the social worker isn’t playing their part you need to take back control and plan it out yourself.

Sammie1990 Well at the moment I see the social worker once every 12 weeks at the CIN meetings, & that's it. I don't see her any other time, have video calls, phonecalls or any other contact apart from occasionally I get a one line email (or an email that I don't understand & I'm not allowed to ask what it means)

So I'd like to actually see her. Speak to her.

She sees my kids at school once/twice in between the meetings.

This is what we have. How is that support?

So I said that I'd like some actual contact with the SW.

And I said that I'd like some help to clear our home because it's a cluttered mess right now with broken items & 90% of the stuff is shoved in any spare corner of my bedroom so that the other areas are 'nice-ish' looking for the kids. But of course my daughter is in my room too so it's not fair on her. I can't find her clothes in the mornings as there just isn't room for everything.

I told her that I'd asked the SW for help with this already 'And what was the response?' She ignored me.

I don't expect things to change. I said to her 'Things are absolutely horrendous as you know, but if all you can offer is what we have now, then what is the point? We had a terrible time last week, including the first 'big' meltdown in the school playground & this week is 'Sats week' too, so I'd of liked some contact.

She asked 'Is the SW aware of what happened last week?' Yes. I sent her 4 emails.
'And what was the SW response?' She answered the first one & said I'd done well, & ignored the next 3.

I don't think there is a clear plan because there isn't a plan. I've done the parenting courses & we had a stupid conversation about that as I'm supposed to feel 'resilient' now, but I'm not sure how that is supposed to help when my son spends hours trying to kill me.

Also, how do I plan things out myself? If I knew how to help my son then I'd have done it already.

This is the part where I'm stuck.

And half the time when I speak to a service they say that because we are 'Under SS' then they can't really help.

I finally got hold of Young Minds & she said that our problems are beyond a normal parent telephone call so one of their specialist advisors is going to call me to help me come up with a plan going forwards.

I've spoken to my son's teacher & he's been 'fine' all week. He's been in a smaller Sats group & Thank god these exams are now over!

He is being offered extra Nurture Forest school sessions & his teacher was querying why they havn't received the signed consent form. I told her that I've never seen this letter but the one that was sent home about high school last week was ripped into a hundred pieces & flung at me mid meltdown, so that one's not getting signed either.

She said I can collect letters from the office going forwards so I said it's fine, keep giving them to my son. This is some kind of 'Proof' that he's upset about things, if he keeps ripping them up, isn't it? (I doubt it)

I've spoken to a few therapists who offer a handful of autism assessments for free each year as a kind of 'pro-bono' assessment. Unfortunately, none in your area. I'm so sorry.

It's ok Stardust1985. Thank you for trying.

Speaking to women's aid they said the best bet for an advocate is to ask the Social worker... Everybody keeps telling me to speak to her!

Yesterday, her supervisor said that it's completely my fault if I've struggled with the CIN meetings & not spoken up, & that I need to tell the SW. So I emailed her yesterday morning & said about how hard I find them, that I used the anxiety strategies from the counsellor & still found them hard.

No answer.

Hi
sorry I don’t think I meant that how it came across, I don’t mean you should have all the answers what I mean is you and the SW should be working towards things changing or getting better otherwise as you say what is the point. At the CIN meetings do you not get an action plan afterwards with what each person is expected to do and this is reviewed at the next one? the social worker should be doing this. It is reasonable to request more contact with her, but be clear in what you want this contact to achieve. For example if you say to her manager you want contact weekly, what for? Again I mean this in the nicest possible way but social workers time is so stretched if it seems like a pointless activity it won’t be prioritised. I would sit down with a list of what you want and how you think it could be achieved and then bring it up at the CIN. Do you have an agency working with you who you feel really advocates for you? In my role that was often me, but I was attached to the school. It seems your school isn’t this for you. Is there anyone who really gets what’s going on and help you put this into action?

Sammie1990 It's ok, I'm on high alert for people being unkind on here.

I have nobody to advocate for me. There is SS & me & that's it.

At the last CIN meeting I barely spoke.

I'm trying to find an advocate but can't seem to find one. I desperately want somebody to help me with things.

Re my post above yours, I was told to speak up so I did & then I get ignored.

We do kind of get a plan at the end of the CIN meetings but the last one sid 'Mum to do parenting courses & mum & dad to explore what other courses are available' (which I've done, done know about their dad) & school to carry on offering mediation etc.

We had Family solutions at the time so they were included but that's it.

No other plan.

That's what I'm upset about. There is no plan. So we may as well not be 'under' SS anymore.

Op I haven’t read your first thread , I’m sorry it sounds really tough so I don’t know if this has been mentioned and I’m sure it has, have you considered PANDAS, and have you watched the documentary ‘my kid is not crazy’ on Amazon prime?

It sounds like you have been very proactive despite everything Struggles.

Hopefully Young Minds and Beans can come back to you soon.

I am sorry that they were not open to changing the social worker. Have you been in contact with the Family Rights Group to get advice? I think a written formal complaint that requires a written formal response under the local authority complaint guidelines is in order as it can escalate above social care to independent people and even the ombudsman once it goes far enough through the stages.

If you are desperate for support you should to appeal the refusal to assess. Don’t wait. Are you still within the appeal window? An EHCP can provide the support (education, social care and health care) you are wanting. Waiting just delays you receiving that support.

I'm not waiting through choice.

I can't appeal the EHCP now or the NDD.

Choconuttolata. Beans is an absolute mystery! I left another voicemail today just 'I need somebody to call me back'. I would say that I have the wrong no written down but I got through the very first time so it can't be.

I think that the Family rights group were the ones who just told me to go with all guns blazing & demand a new Social worker... Same as the MH cafe worker. It's so easy for people to say these things.

It's been a rough few days for me personally.

Their dad is making noises about not coming to the next CIN meeting... So right now neither of us are going then!

I spoke to the Social workers supervisor about their dad still being abusive to me. She said they have it on the notes that he used to be... I said 'Well it isn't 'Used to be', it's present, it's now as well' & she just said 'Ok'.

I spoke to 'Mind' today about some counselling but I can't afford it.

Thank you Coalfacebigtits I'll have a look for that. I did look up PANDAS before & it wasn't quite right for a few reasons.

I have one really tender, huge bruise left on my knee (from a hard-back book being flung) & most of the others have faded now. Night times are difficult as everything goes around in my head & I feel like a failure as things still aren't ok, & where I've not been able to put pressure on either arm & a certain spot on my back, that's not helped, but tonight should be better if I just mind that part of my knee.

OP I know this sounds awful but would you consider saying that your son can no longer live with you due to the risk to his sister? SS doe everything they can to keep families together, in my experience even when things are unsafe because there is such a lack of placements. You may find they start paying more attention.

Waiting is a choice. Even if you are out of the appeal window you can request leave to appeal out of time from SENDIST. You can also request an EHCNA again in order to get the right of appeal again. That is something you can do within your control. And it is a route to further support.

Also just to say I understand why you might not want to speak much at the CIN meetings but it won’t do you any favours. The social worker needs actions from the meeting too but these need to be suggested by you and school, if you have a SW that isn’t very proactive they will happily not put themselves down to do anything. I wish I lived closer to you as I would happily attend a meeting with you.