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.

Thank you Choconuttolata. Yes I think it's at that point now isn't it. I should hear from the solicitor who I spoke to before, tomorrow. So I will see what they say & then get back to you.

I spoke to Pohwer re advocate, & they said that they've 'lost' my initial referral form so she's done it again but it likely won't be done in time for the next CIN meeting now.

Very busy day. I spoke to 4YP, they are going to do a referral for counselling. Young minds referred me to the NSPCC. They have already phoned me, said the same as everybody else really, why won't the SW just put the assessment through.

They also said that I should make a complaint. They gave me some ideas of people who I havn't spoken to yet so I'll go through all of that when I have time.

After this, I then told her about my son trying to kill himself & the meltdowns since & she was saying 'And the SW knows about all of this? & nothing has changed?' It sounded like she couldn't quite believe it & she said that I absolutely need to make a complaint then.

'Pohwer' can be an advocate for me but NOT for the next CIN meeting, as they aren't available. I've informed the SW & the school that I will not be attending this meeting, in this case, & referenced the meeting that we had at the school recently (which was a total disaster)

Please don't anybody tell me that I'm wrong for this. I know that the CIN meetings are important.

I am the one living this & me being upset to the extent that I was after the last meeting at school, is not going to help my son, my daughter (or my own MH) at all.

Complaint against the SW has been made.

Could you ask them to swap the CIN dates to a time when the advocate is available? Seems a reasonable request.

imip I'm not sure. Do you think I could?
It's soon now (because I waited 5 weeks for Pohwer to get back to me, as they stated at least 4 weeks wait for the referral)

I would recommend a parent ask this on your situation at work. I feel very strongly about parents having access to advocates. It helps empower you and learn advocacy skills. I would have thought on a CIN plan having a point about parent not feeling empowered in the process and having access to advocacy would be good to make. They can only say no and you saying I would like to come to the next CIN meeting but feel strongly that I need an advocate means your not skipping the process, you just feel very overwhelmed attending without an advocate, particularly given the last meeting was so difficult.

Thank you imip Yes, that makes sense. I will think about asking them to change it. Without going into detail here, everybody in the meeting was extremely aware of how difficult I found that meeting.

I completely agree with @imip. Definitely ask if they will consider changing the meeting to a time your advocate can attend. I would send something along the lines of...

'Further to my email stating I won't be able to attend the next CIN meeting as I do not feel able to attend without an advocate, I would like to request for this meeting to be rearranged to a time my advocate can attend. This will be after xxx of July. The CIN meeting will, understandably, have aims and objectives for me to deliver on but I don't feel in a position to agree these without an advocate to support me. Equally, I don't feel that it's appropriate for the CIN meeting to go ahead without me, my son's primary carer, in attendance.

I really appreciate your support and understanding in rearranging this meeting to a time when my advocate can attend.

Warm regards

Struggles'

Thank you. Yes I'll try to do something like that, Stardust1985.

Funny how a complaint changes things.
I've just got home & checked my emails & the SW is suggesting a different date for the CIN meeting, so that my advocate can attend too.

Hello OP, I haven't read the whole thread, but I just wanted you to know how angry I am on you and your son's behalf. That therapist who constantly changes appointments yet tries to push all the blame onto you for how your son is- how can he not know that changing arrangements is in itself inherently traumatising for autistic people?? I'm autistic myself, and every time an arrangement gets changed I feel a stab of pain. Because I'm an adult, and "high functioning", I manage to keep it inside, but it all contributes to a general sense of burnout and exhaustion.

From what I can see you're an excellent parent and working so hard for both your kids. It's a real shame they have to share a bedroom, but there's not a lot you can do about that is there? 🤷‍♀️

Thank you for the support crackofdoom I appreciate it.

Yes, 'Stronger families' was a very difficult time for us.

My daughter is in with me now & my son has the other room. So he trashes that regularly.
I got my daughter a new bed, painted everything (including the bed) Pink & Silver & added stickers, glitter, lights etc. I know that 'stuff' doesn't make things better but it's all that I can do for her.

The solicitor is busy today but I've had her colleague call me 4 times already. He is doing a safeguarding referral for my son & one for me (I've never had one done for me, I'm slightly worried about what this might trigger)

Thank you so so much to everybody from the bottom of my heart but I need to stop posting for now.

Hello, MN kindly closed the thread for me for a while.

Thank you to @Choconuttolata
@imip
@Scirocco

For the support through private messages.

Hi, welcome back. I hope things have improved and I'm still here if you need to chat.

Hi Scirocco. Thank you.

Nothing is any better, I'll try not to repeat things (I've not read back through the thread)

The paperwork for the NDD assessment was finally put through but it's all been refused & my son's case is closed with them.

Oh no, I'm so sorry. That's awful.

Thank you Scirocco.
We are, as ever, left in limbo.

So just having a read back, where we are now is I have the advocate but it's very basic.

Our complaint didn't go anywhere, the solicitor has responded & we are waiting to hear further.

My son is holding things in until he can't anymore.

His new school are saying that they 'don't see it', they aren't getting him counselling (they initially said that they would, so I was looking forward to this starting, but they've now changed it) they sat him next to his bully from primary school (!) & their arguement here is... This other child likely never bullied my son because he's a nice kid... (He's been moved now but it's somewhat begrudgingly on the schools side)

My son is doing really well with things like choosing & paying for his lunch, & I'm really proud of him. He asked me to take him & pick him up on his first day (which resulted in my daughter being late but couldn't be helped) but apart from that, he's taking himself to & from on his own, he's doing so well!

Meltdowns are off the scale violence towards myself. He's suddenly either a hell of a lot stronger or I'm a hell of a lot weaker, And they go on & on & on.

My daughter is having a lot of support at school.

Hi Struggles,

I think it might also be important to find some parent support groups where you can find parents in similar situations. Sendiass may have advice on that? Sometimes local knowledge is really helpful as different areas work in different ways. You are in a safety valve area from memory, which can have a huge impact on the type of support available at school. It may help you feel less isolated also.

Thank you imip What does a safety valve area mean?

I've got some people to phone today, & a parenting course later.

I heard back from some support for my daughter on Friday, they said that they know that the last time we spoke, I was trying to get my son assessed for Autism, & if this has now been done then we can be offered more support... Sigh.

https://www.bbc.co.uk/news/articles/c2lnd5wj9z5o

@StrugglesSadness I saw this article about mums struggling to find help for their sons and thought of you. There's mention of a programme about it on iPlayer too. Thought I'd share in case it's of any help.

Thank you for this Scirocco. Seems to be common that the help that people need just isn't there.

The advocate has put another adult safeguarding through (although I'm not sure why, as they don't change anything)

I'm doing this course at the moment (& it is specifically for parents of children with disabilities) but it's just so difficult for me. It's the toughest one yet & I'm not sure why I'm finding it so hard... Maybe it's because a lot of the strategies that they are suggesting, we've already tried as they've been suggested to us by previous people, & I know that they won't work for us.

Maybe some/one of them will work this time. All of the other people doing the course have already had their children diagnosed. Also, one of the workers was on my very first course, back when my son was 3, & that's really upsetting. It's reminding me of just how long I've been trying to make things better for my son, I think, & how many years I've been told that it's my parenting that's the problem.

Hi @StrugglesSadness been catching up.

Just a thought there are people setting up Go Fund Me's to try and get funding for a private assessment (and meeting their target, search it).

https://www.acorn-autism.co.uk/fees-and-funding

These people are relatively nearby I think to you. It may be time to go outside the public service system.

Thank you Choconuttola, I'll have a look.

Sometimes on here people say that the private diagnosis aren't accepted by the NHS though don't they, how do you know if one would be? (Do you know?)

I'm in 2 minds weather to try again or not, tbh.