Need a hand hold.

[sugarplumfairy28]

We are in Germany so I appreciate things might work a little differently.

Our DD is being investigated for a neurological disorder, they pretty much look for anything/everything rather than one thing specifically. She has had SPD diagnosed, has had intelligence tests that came back as gifted, has done the Autism test,which was 'inconclusive'. Over the last year everything has gotten so much more severe, her behaviour has gotten really violent at home, we have absolute refusal at school, she absolutely hates her Maths teacher (2 other parents whose children have SN have complained about the same teacher), she hates writing, we have 6-7 hour meltdowns trying to get homework done. She has difficulty maintaining friendships, has serious boundary issues, no concept of authority, she has some serious anxiety problems and separation anxiety, but with new people she masks everything very well. Our school are utterly useless and are actively trying to make the situation worse in an attempt to motivate us to push the diagnostic process along quicker.

DDs behaviour is so severe we are at breaking point. Ironically when she sees her psychiatrist there are no problems, its always so calm and relaxed there and no pressure, nothing presses her buttons. In light of the polar opposites, the unbearable pressure from school, our DD is having to go into the paediatric psychiatric hospital as a diagnostic inpatient, which is planned to last 3-4 weeks, she stays there, we do not. She goes in today.

Because of her anxiety the hospital are allowing us to see her every day for as long as she needs (usually 1st week is no contact), she has recently had an incredibly traumatic operation for her teeth and they were worried no contact would cause further trauma. I've had to label everything she owns (We have no school uniform so I don't usually have to do this) pack her toys, and everything for a month. I know its for the best but I feel absolutely heartbroken. I am going to miss her so much, my life revolves around her right now and I am just going to feel lost. She seems OK about going now that we have this no contact exception, I feel like I am being selfish thinking about how this is going to affect me.

Sorry you're all going through this. It sounds really tough. Have you read about PDA?

Yes, although it appears to have a lot of overlap with ODD which has been mentioned regarding our DD.

Jesus, that is tough. How old is she?

I hate to say it, as I'm sure you know it, but for our dd, with a similar catastrophe at and caused by school, leaving mainstream and going to a special school has transformed her.

It sounds like you know she's autistic but without a diagnosis I guess it's very difficult to access the help she needs.

Does she really have to stay in this inpatient facility? Is there no other way to get a diagnosis? It sounds very disruptive and potentially anxiety provoking.

Lego she is 8. We live in a small village where our mainstream school serves 5 villages, we didn't even fill in an application for our children to go there because there isn't another one for miles around, there is a Montessori school about 15 minute drive away but they have a strict rule where they only take new children from the 1st class with no add ins or anything. We are due to have an inspector in to school to assess what she needs to learn effectively but apparently we were late with the application and they won't be out til November. Also the education psychologist has said that a 'special' school isn't for her, its designed for children who are 'slower', that isn't meant as an offensive thing, I think its just doesn't offer the right kind of help she needs. There just isn't a huge amount of choice of schools. What doesn't help is our DD doesn't want to change schools, she loves her main teacher and has 'friends'.

To get any help at all though we need a diagnosis, but our DD masks everything in front of people she's not familiar with, she comes home and explodes. School wise its taken a year for her behaviour to become apparent at school even then she tries to keep a lid on it, her usual is she climbs up trees and refuses to come down until I pick her up. Our DD basically has surrogate grandparents next door, they spoil her, let her do what she wants and they had no idea all of this was going on, because she is never stressed or her buttons pushed.

We've been going to the clinic for a year now and she masks there too and her appointments are sufficiently short nothing too severe comes up. They totally believe what we are saying and take us seriously so they made her a priority, put her at the top of the waiting list. She's in there so they can see everything as a whole.

She was really mixed going in, stopping me going into the office, pushing me off the chair, then kicking me, which I really hope! they are taking note of. They said they wouldn't call yesterday and try and let her settle, but we got a phone as she really wanted to talk to us but all we could hear was her crying and screaming, so I guess they have seen something.

No-one slept last night, really conflicted with guilt and trying to get her help.

I'm really sorry to hear she's obviously upset.

My dd is also 8, hates writing and had a huge, very difficult reaction to school last year. So you have my intense sympathies. My dd was traumatised by school to such an extent that she literally never left my side for months. She came to the toilet with me, slept with me, I accompanied her to school for a few hours every day. It was so so hard. She was so broken. (I'm struggling with the idea of your dd being away because mine was so focused on home and me as a way of coping! But everyone is different.)

But like your dd, she's very bright, had friends at school - there was so much potential for mainstream to work. But there needed to be a lot more knowledge and commitment to the adjustments she needed to manage in mainstream and sadly they were not forthcoming despite woolly good intentions on the school's part.

Will there be good provision for her once the diagnosis comes, do you think?

Me, I'd take her home and tell them that she needs a diagnosis and support and if they don't know that autistic girls mask, then maybe they should look it up. But I'm not in Germany, constrained by a different system. In fact, we were very lucky to be in an area particularly good at autism in girls, so dd might well be undiagnosed (and not in school I suspect) in another part of the country.

School is just a nightmare, the way lessons are taught are more in line with senior school in the UK, they have a main teacher and then a few different subject teachers. Her main teacher does try, and I think with a diagnosis and the law on our side, it will give her the politely forceful shove into committing to helping her and not just as and when it suits her. Other subject teachers I think are a lost cause, one teacher has not only burned bridges but the entire surrounding areas and honestly I don't think there is a way back with that one, another teacher I'm slightly on the fence about, he was doing religion which isn't compulsory and very very early on asked for her not to do religion because of her difficulties. The main issue is you do not deal with the school as a whole, you have to talk to all the teachers individually and this is the biggest problem. Home schooling isn't legal here, so I have to send her somewhere, and changing schools isn't simple.

Currently autism is taking a back seat, and ODD, OCD, (we already have SPD) possibly ADHD and severe anxiety appear to be front runners.

We went and saw her yesterday, she seemed to have had a good day, but started very quickly to complain she was hungry, I have tried to be as clear as I can be that she eats a very limited number of things, and will not eat anything else. None of this if she's hungry she'll eat something, or she might try it if everyone else is eating it, it just doesn't work. When I tried to leave to come home, she had a full blown meltdown, she was in hysterics, the therapists weren't very useful at all, and it was only when her psychiatrist came in and said lets get her some nuggets for dinner, and another hour with me calming her down was she OK enough for me to leave.

She called about an hour after we got home and after she had eaten and she was actually fine! Chatty, telling me about things, asking about the cats, asked to talk to her brother, and: DD "Mummy", Me "Yes darling" DD "....LOOOOOOOOOVE YOU" (we do this a lot at home, just at random). So I feel the meltdown was because she needed me to fix the food problem. So I'm just going to try to keep busy during the day, go whenever she needs me to go, and try and use this 'Mummy super power'

Bless you. It's so hard. I would guess from afar, but with a very similar dd, that the anxiety and the odd are all functions of the autism.

You know, she was /is doing amazingly well to go to school and push herself through it.

If her needs are complex, and it sounds as though they are, then it is good that she is in an environment where she will not be able to mask them from those who are trying to diagnose.
Sometimes our children's health (physical, mental or emotional) is such that they need to be hospitalized for a while in order to get the help they need. Hopefully this will be one (difficult) stage that will lead to better things for you all.

Unfortunately its not been going well. We have hit a fundamental issue when it comes to food. Our DD has severe problems regarding what she eats, and her psychiatrist in her hand over to the unit explicitly told them to work from the tiny list we provided, and this wasn't negotiable. The purpose of her stay is to diagnose a neurological condition/s and there would be no active therapy at this time for the food problem. All week the unit have ignored us, and our DD has been surviving on a bread roll, she has drunk less than 2 litres of water for the whole week, twice now when we have visited she has had incredibly emotional, violent episodes when we try to leave because she is so hungry, her stomach hurts and is incredibly tired. In both these cases, we have had to call her psychiatrist in as the unit won't even help to calm her down, and her psychiatrist has demanded appropriate food for her.

We have spoken to the unit every single day about food and every single time said she simply will not eat the food on the menu, and the unit only answer with she needs to eat the same as everyone else, despite the advice of the psychiatrist and the fact our DD has barely eaten anything all week. We are pulling her out today, almost certainly with no diagnosis and will have try a day clinic approach with a possible long waiting list.

Oh no. I'm so sorry, what a stupid attitude for them to take.

Oh my goodness, i really really feel for you. Im pleased that you got your girl home, it sounds like it was for the best.

I know its only a small thing but it all helps... My Son would have huge, night long meltdowns about homework. I pointed thw school in the direction of sudies showinf that homework has no benefits until secondary school and explained the mental torture that it obviously was to my son and how it was impacting on his sleep as hee was having to recover from meltdowns every time. I told them we would not be doing formal homework but that we would do extra reading instead. They didn't argue with me and it has seriously transforned pur home life. I know homework is the least of your worries just now but I thought i would share anyway.