I just need help

[sugarplumfairy28]

DD is 8, we live in Germany, she has been in the diagnostic system for nearly a year now. She has a prelim diagnosis of ODD, EBD and SPD and scored superior on both her intelligence tests, her Autism test came back inconclusive.

She has not been to school this term at all. She was meant to have a 3-6 week diagnostic inpatient stay, but that crapped out after only a week due to a fundamental disagreement about food. Then the plan was switched to a diagnostic day clinic, we had a taster day but it didn't go well, but we are waiting for a parent/child place which still hasn't come up yet. She has been signed off up until now as she was showing clear signs of suffering.

With the ODD it just seems to be getting worse, I stand my ground on something and everything else gets worse, for example I put a time limit on when I would lay in her bed at bedtime and give her a cuddle to go to sleep, which seemed to work OK for a while, but then when she was told she could not have a 'friend' come play in the house, at dinner time, she then smashed the front door. She doesn't like running errands or leaving the house for anything that isn't fun, and even sometimes includes trips she does actually want to do. She has worked out that I simply cannot just leave her in the house alone and do these things without her, so she will kick and scream, throw furniture, break things, and make herself entirely unapproachable and ultimately she 'wins' and I cannot get her out the house. FWIW I can in theory manhandle her to the car, I will be bitten and punched and kicked in the process, but then she is downright dangerous in the car, throwing herself all over the car, shes in the footwells, and attacking me, so its just picking her up and making her go isn't an option.

Last week she did this with an appointment with her psychiatrist, my DH spent an hour and a half constantly calling trying to get through to someone to no avail. This appointment was particularly important as DD is returning to normal school tomorrow. School is a MASSIVE issue, the school are understaffed, and not trained to deal with a child like her (but until we have a formal diagnosis we are stuck). Every single day is a huge struggle, often I just can't get her to school at all, often when I do get her to school I am asked to collect her early for one reason or another, and this happens so frequently I can't leave the house to do anything because I am then too far away. Homework is just a straightforward no, I have tried so many times to get it down but its 6 hours of screaming and breaking my house and it never gets done. Honestly the stress is debilitating, I basically live with a raging headache, I don't sleep properly, all of my own ailments flare up all at once.

Does anyone have any experience of ODD and have any suggestions on how I am meant to get her back to school?

SugarPlum you posted about your dd before.
I think the general consensus was to try and pursue an autism diagnosis /an or work on the anxiety, as the ODD was almost certainly an aspect of that.
I think we also talked before about how her refusal to leave the house and her extreme reactions to things (like the friend not coming over) were not oppositional exactly but to do with anxiety.

For example, if you were to discuss with the school that her anxiety is exacerbated by homework issues fear of being told off, they could put in specific approaches, that would not necessarily require more staff or funding, just a bit of sensitivity/awareness/encouragement.
I think you mentioned you were worried about her falling behind in the system academically, (or perhaps I misremembered) Again might it be possible for the school to set her work she liked doing ( I remember I loved colouring beautiful poems or reading) so that the school day would be more attractive to her in the short term. Using her as a classroom helper or getting her to help with the little ones in school, might be other ways of making school feel more satisfying for her and to feel included. These are all strategies my son's school used when he was finding school different, and they used them for children who were not diagnosed too. It didn't cost them much, it was just a pastoral holistic approach.
The other thing that worked for us, was to slowly reintroduce her to school, first just for an hour to do something enjoyable (singing? library?) pick her up when you promised, for a week, then slowly build up the time and different lessons.
I cannot see why they should object, after all she hasn't been in school for so long, how can they deny there is an issue with anxiety and reacclimatization.
I suspect your dd is in such a state of fear and she doesn't know when she is going to panic or what the response will be, except that if she kicks off you will rescue her. So you have to get in there first and rescue her before she kicks off, and reduce her reason to kick off at all.

With regard to her "winning" by stopping you leaving the house to go on errands, a strategy I employed was to hire a teenager for a hour or two to babysit. Ds2 actually liked the teenager and wanted her approval so behaved beautifully. It was a cheaper solution than some others offered by professionals and therapists. Ds2 really craved attention so if a person other than me gave it, he always responded very well. What didnt work was that most primary school settings had very little one to one, and that was when he started to behave less well..

I am just at a loss, her clinic have told us its not autism. I have mentioned anxiety several times and it gets ignored. When ever DD has an episode at the clinic they say that its oppositional behaviour, that her refusing to leave the room so we can talk, is an attempt to control the situation, and that her refusing to leave the house is oppositional too.

Last night was a bit all over the place, she did eat dinner, she also had her bath, and didn't argue about going to bed, although she did not sleep. We did have several moments of 'I don't want to go to school' but nothing major. I've gone in to get her up, and she's cut off huge chunks of hair, super short and she looks absolutely terrible especially considering her hair is bum length. Personally I think it is a MASSIVE red flag that she cannot cope with going back to school, but no-one has said anything at all about how we do this. We missed the appointment because she had a meltdown, no-one has spoken to school, there are no allowances, no cut down hours, nothing!!

I would see that as a red flag too. Of course the behaviour can be described as oppositional but that is just describing what it looks like, not what is causing it: and it doesn't help resolve it: I think you are on the right track (trying to understand what is causing the anxieties/difficulties that are causing her to need to have control over these situations) - she isn't just doing it for fun. But it sounds like the system there is not supporting you in that aim, but just trying to shut her behaviour down without getting to the root of why she feels the need to behave that way. What she is doing will be perfectly rational: but you have to understand (as you are trying to) what problems she is trying to solve or what triggers she is responding to by behaving that way, and then help her solve those underlying problems or remove those underlying triggers, rather than just trying to shut down the behaviours (which is likely to just make her feel bad about herself and damage her mental health).

Are there any parents groups locally (or at least national online groups) for parents of autistic girls or girls Dx'd with ODD that you could tap into? They may have more ideas on how to get a good outcome out of the German system (most folks here will only know about the UK one - so I guess we can come up with ideas on things to try at home but it really sounds like school is probably the problem).

to be brutal, I think you need to go to another clinic if they are not helping or offering any solutions to this or getting school on board.
For a start, CBT (for children) involving parents usually at that age, is about reducing anxiety.
You can google NICE guidelines in the UK on how you actually deal with children who display ODD (and never discounting that this might be an aspect of autism). They recommend strategies involving parents as the most beneficial at this age. Does your clinic do any of this? I'm not saying that in the UK people are getting the help they need either...you only have to see all the posts on this board to realise the UK system isn't perfect.

None of us in the UK can know what the German system offers, but there are children with autism in Germany and presumably some with HFA too and there must be SOME educational provision for these children. Could you search for German autism charities just to signpost a bit better? I think I read somewhere that the diagnosis in Germany can take much longer, possibly because the help on offer once you are diagnosed is expensive to the state.

Trying to sit down and work out where the problems are and what exactly needs doing is so difficult right now. My DH camped out on the clinic doorstep yesterday morning and managed to get us an urgent appointment yesterday afternoon. Can someone tell me if my train of thinking sounds logical or even the right thing.

First of, DDs psychiatrist said a lot of elements about DD seem so obviously Autistic. BUT her ADOS test was so very clear that it isn't autism, so is it possible to have this result and still be autistic? Is this the big hurdle we need to overcome?
Her psychiatrist said that she needs to observe her over a normal day and see what is the cause of the behaviour, but this observation needs to not have any major obvious circumstances that could reasonably explain the behaviour so for yesterday she was already in a really emotional place because of the whole school/hair cutting thing. This is why she had the impatient placement, so that she could settle in, get on with a daily routine and for it to become normal, and then be observed, and when that didn't work we are waiting for the day clinic placement. The why she needs to be observed seems to make sense to me, but understanding why this is so difficult, I can only come up with they are trying to diagnose autism with an ADOS test saying the opposite, is that a thing?

As for help, the school were meant to be taking charge and organising the various agencies we need to work with, but that just hasn't happened, the school are only interested in offloading her, and while she has been signed off school, the school have cancelled appointments that would lead to help, additionally the school have said help only comes with a diagnosis even though her psychiatrist has said otherwise. Her psychiatrist sat for an hour with us yesterday calling the various agencies and has now taken over this role too.
We need to have a meeting with, the body who signs off funding and approves in-school assistants, also the with school itself to be told what and why they need to be flexible on, different types of work, different types of testing, breaks, hours, homework. The education psychologist, and another agency who can provide hands on help at home.

Her psychiatrist has said only when there is an actual framework for help in place, she will put DD on meds, as she will not risk any of these groups/agencies assuming that just meds are the answer, and that meds alone anything will change. DD is back to not having to go to school, her psychiatrist has said her anxiety is so high and her aggression is so extreme, the pressure of school is too much. The meds she has referred to would be anti-anxiety meds, and something to bring down her aggression, just so there is a window where talking and working with DD is actually possible.

So my train of thought is, this all sounds reasonable, if the problem is this ADOS test throwing everything out.