Absolutely mortified....how could she do this and why?*update*

Sambucus_Nigra

teabag29 wrote: »

My concern now is this. The place that diagnoses this disorder (and others) is in nottingham and costs £2600. Who would I go to about getting funding for this as its not nhs? they accept parent referals or if I can raise the money do you think its worth a shot?

Call them tomorrow and ask them how to get a referral in the fastest time possible without it costing you a bomb.

carefullycautious

Sambucus_Nigra wrote: »

Call them tomorrow and ask them how to get a referral in the fastest time possible without it costing you a bomb.

Agree with this telephone them and ask if there is any charitable funding available to help you with this. They may waiver the fee or reduce.

Write everything down she does/is doing

Make that call

teabag29

I'm going to ring tomorrow. There is a support group online and ive been reading, apparently they are now giving appts for may/june time and some ppl have got funding through primary care trust. Some say I may need a professional to refer though so will get on to the paediatrician tomorrow

flora48

Oh teabag I feel for you. Your DD has a problem, whatever they decide to call it you all need help. It seems that so many professionals are playing ball with your DD's case, passing her from one to the other.
The time has come when you need some concrete help and you need to make a nuisance of yourself, don't be fobbed off whilst her case is passed around anymore. I know from working in education that those who made the most fuss got what they needed. Choose the dept... education, health or social services and go and see them in person. Take your DD with you so they can see the problem. Stand your ground and insist on some action.
I would be wary of any diagnosis, especially one costing that amount of money. If the condition exists then surely it will be diagnosed and recognised by the relevant authorities. Even if you pay and get the diagnosis there is no guarantee that it will be recognised by those that be.
Take care and good luck

londonsurrey

Flora is right. Have you tried getting an advocate? They help with getting you help. Possible signposting places I'd try for finding an advocate are:
http://www.autism.org.uk/our-services/advice-and-information-services.aspx
http://www.mencap.org.uk/what-we-do/learning-disability-helpline
http://www.sane.org.uk/what_we_do/support/

daska

It is sometimes worth paying for an assessment outside the NHS/Local Authority. It was for us, a clear report from a specialist opened numerous doors and prompted the other specialists (and generalists) to pay better attention and do formal assessments rather than rely on impressions. But in our case the bill was just shy of £500. (When I encounter raised eyebrows I point out that we weren't trying to jump the waiting lists, just get permission to get onto the waiting lists.) You need to bear in mind that here are a number of possible scenarios here. It could be anything from: a confirmed diagnosis, everyone goes "yes, of course, how silly of us not to spot it" and you get all the help you need (worth every penny). Through: She gets a diagnosis, some or all of the professionals say dispute it or are unwilling to understand/believe it or unable to do anything to help due to lack of knowledge/training/resources and you're still at square 1 having placed them in the unenviable position of being told they're wrong. To: No diagnosis, £2,600 down the drain. It's a huge gamble and one I would 100% understand you wanting to take the risk on. Not knowing what's wrong and being told "it's all you" is a scenario we lived with for 2 years and that was hard work so I have no idea how you're still going after so long. Good luck with the Paediatrician, my fingers are crossed for you.

carefullycautious

I would have thought that if there was doubt from the specialists conducting the assessment they would advise not to go ahead. I would hope that to be the case

puddy

you have often mentioned 'attachment disorder' what are you meaning when you say this?

attachment is usually assessed in various categories, we all hope to be securely attached but when it goes wrong the other categories are ambivilent, disorganised, avoidant or insecure, have you read about these categories and recognised any behaviour?

accurate assessment is necessary because there will be several things going on here, firstly she is physically a 13 year old child with behavioural aspects concerning that, secondly emotionally and educationally she is around the 6 or 7 year old stage so this will impact on her interaction and behaviour, that needs to be considered before any other possible psychiatric/neurological/emotional disorders could affect how she acts and feels

she sounds a very angry child, this is being directed at you, whether she is actually angry at you or is simply taking it out on you is impossible to say without professional intervention.

once the child protection section of SSD finish with you, it would be asy for them to shut the case, you need to press for her to be referred to the child in need team and ask for a core assessment (similar to the caf layout and focus). SSD will be reluctant to do this as she has so many other professionals involved (even though they are not usefully involved), cases like this are always subject to buck passing as camhs is usually necessary but camhs have such tight referral criteria they will fob off, but she needs psychiatric/therapy based intervention in my opinion

also statements can be given for behavioural difficulties not just educational, see if you can press it on this, however if her behaviour is better at school (although not great) it seems to point to issues with the relationships at home rather than other things which again points to attachment issues. it would be useful for you to assess your own attachment style (we all have our own style) to see how your attachment style interacts with hers

teabag29

Ok deep breath........ Ive spent all morning on the phone. Been waiting for a call back from the social worker who came out to see me since 9.10 am when I got told she'd ring me in 10 mins....i've rang back 3 tmes and said its urgent but still nothing.

Rang the centre in notts about getting her asessed for pda, the accept self referal but also need an accompanying letter by a professional.

The psychologist is off for a month, paediatrician isnt in until wednesday and very hard to get hold of, cant get a doctors appt until friday but they he hasnt been very supportive anyway, camhs dont want to know and school are less than useless.

Took a gamble and rang the boss of the ep that saw dd last year, explained everything. He actually is very familiar with pda and says the asessment is a good idea and the centre is very good and reports are very thorough (even if she doesnt have that particular disorder they will highlight her difficulties and needs). Ep said he will ring them today to see what needs putting in the letter so hopefully I will get seen in June/july time. I was also advised to contact my mp and both myself and dd are being let down and see if she can help....i did this and i have an appt with her on wednesday.

Also rang s.services to request a carers asessment to get some respite care here n there to give me a break. They said i'd have to wait for the s.worker i saw on fri to ring me back. I explained shes part of the child protection team and she's already told me she doesnt deal with that side of things but they said she is who i need to speak to......i would if she'd blooming ring back. Think they getting annoyed with my calls now.

Husband came up with a good point lastnight echoed by the ep today. Dd seems to live in a fantasy world at times and its questionable whether she understands reality from fantasy. After watching soaps she brings things to life, e.g after a particular episode of coronation st she now has 2 imaginary friends called liz and jim. She also has an imaginary baby called amy (like eastenders). Then after the whole coronation street sian and sophie storyline she broke down and told me she was a lesbian. So i'm now wondering if after watching eastenders last week when ben told the police that his dad had done things that werent true....is this why she went to the school and lied that I abuse her maybe? I just dont know what to think anymore and she is so convincing when she says something that its very believable so i now have no clue when she is telling the truth and when she isnt.

I spoke to psycologist about the soaps thing but she advised not to stop her watching them just enforce the whole fact fiction thing to her....i do this but she doesnt get it. She will ask things like has so and so had the baby yet, i will explain its just a programme and not real and think shes understood and then she will say "so has she had the baby yet then or what"?

Not sure what my next move is, eagerly awaiting school home time to see how things have gone for her today. To make things worse i got a call from dd's primary school today to bring her some fresh clothes....she had wet herself!!! She hasn't done that since she was 2 and she is almost 10. Over the weekend dd1 (the oldest who post is about) told dd2 that she really got s.services involved because she wants her sent away and she hates her. Dd2 must be worried not surprisingly. We need to have a long chat tonight.

I was wondering if its worth applying to any charities to see if they would fund the asessment for pda to save me having to borrow the 3k, does anyone know of any charities or organisations that may consider this?

elvis86

teabag29 wrote: »

She said I hit her with a belt, held her and asked my other dd to get the belt then hit her with it.....even the way she re-laid what she said back to me sounded so convincing, like she was remembering back to an incident, but there has been no such incident. She told them I dont feed her (she steals food and has a food obsession so I can imagine they prob now think this is why she does that), she told them before we have a meeting with a professional or a caf meeting I tell her what she must say in the meeting, there is a slight bit of truth in that but not in the sense shes made out, I remind her to tell them what games and learning things we've done since the last caf (her memory is very poor at age 5 so she does need things refreshing). The way she has portrayed it is that I fill her head with things to say before the caf that arent true to make me look a better parent. She also told the cso that I dont help her at home educationally like I claim to.....and according to her the response from the cso was "well we both know if she did do the things with you she claims to you'd be in the top groups by now"..... although I know dd lies through her teeth I can quite believe this was said becuase the cso has made a very similar comment to me herself before now. The thing is I genuinly do help dd as much as I can, I have taught her the alphabet and half of her months (may seem nothing at age of 13 but as I say she has poor memory and ive been trying for years....more than school have managed to get her to learn), I have taught her the colours of the spectrum, helped with homework and projects which is a battle because she refuses to do it and it takes hours, I do 1:1 reading with her and also family reading where they all stand up and read a page out loud then swap over till the book is finished. On top of that we also play lots of games and alot of these are team building and trust games which the psychologist has given us to try, also memory games and things like monopoly, wii, ludo that sort of thing.

I'm really angry at what the cso said because a) shes been at that school 18mths and getting extra help and since she started shes gone down atleast 1 level in every subject so how dare she say I cant be helping her otherwise she'd have moved up in her levels and b) by saying that to her she has played right into dd's hands that she has been believed and all she has to do is come up with a story for professionals to believe her and that will give her attention and get her out of lessons for the afternoon.

You know exactly what your daughter is like, how manipulative she can be, and how convincing her lies sound; and yet even you have taken her word as gospel and are now getting yourself wound up about something that she claims a professional said to her?

The situation sounds absolutely terrible, and I appreciate that it's easy for others to dictate what you "should" be doing. But tbh, I have to echo what others have said.

It sounds to me like you actually do very little to discourage her behaviour (possibly quite the opposite, in fact), and you're very quick to justify everything she does as a symptom of whatever medical problems she has. I'm no expert, but even kids with behavioural problems have to be disciplined, surely? She can't just spend her life doing exactly as she pleases and riding roughshod over everyone else "because she has [insert medical condition]"..?

I also wonder whether you (possible subconsciously) have spent the last 10 years trying to "make up" for the year of seperation, due to the guilt that you feel? And whilst I don't deny that she has problems, perhaps knowing about your guilt and knowing that she has you wrapped around her little finger has enabled her to push the limits further and futher?

teabag29 wrote: »

She told them I treat her differently and she got nothing for xmas.....omg she had £800 spent on her!

Seriously, regardless of whatever disorder it may transpire that she has, some of the things she has done are disgusting and just downright bad behaviour. The fact that she revels in the disruption and hurt she causes is evidence of this IMO. To reward this child with £800 worth of material things at Christmas is madness.

Do your other kids get the "designer bags", horse riding lessons and £800 Christmas gifts? If so, 4 x £800 = the full £2600 you need for this assessment and some...:cool: