reassuring words needed after just receiving diagnosis of severe emotional/behavioural disorder

[P51mama]

After years of knowing something wasn't right but no one really taking me seriously until I had a nervous breakdown at the beginning of the year, we have just received a diagnosis for our almost 10 yr old DD after 9 months of evaluation. She has a very severe emotional/behavioural disorder. It's been very distressing finding out just how bad it all is but also a relief to know that it wasn't that I was just a crap neurotic mother who couldn't handle her kid!

As if we thought it couldn't get too much worse we then had our appointment to find out the course of treatment. They don't feel that once a week therapy will scratch the surface of the problem as her particular disorder is incredibly hard to treat and have strongly suggested residential treatment for a year or 2!! We were shell shocked to say the least, absolutely refused etc but having stepped back and gotten some perspective we can now understand where they are coming from with this suggestion. It is not a 'compulsory' thing but a strong recommendation if we want to see some progress in her. I have been fine about it this last week knowing that there is a long waiting list for places so nothing will be happening immediately anyway should we decide to go this route but I have suddenly cracked. I think the full enormity of it all is just dawning on me and I don't have anyone to talk to that truly understands what it is to live with a child like this. The family members and friends I've told have tried to be supportive but just don't understand the diagnosis or treatment and I am just left feeling like an evil mother for even considering letting her go..

Does anyone out there have any experience with this?

Even from this one post, it is plainly obvious you are definitely not a crap neurotic mother who couldn't handle her kid

I do wonder if the nervous breakdown is making you feel unable to challenge the professionals' judgement about their treatment plan. Given the acknowledgement of severity, their feeling that once-a-week will make little difference, and the offer of a very expensive, long course of residential treatment, it would be 100% reasonable for a parent to want a second opinion.

Pure 'emotional-behavioural' disorder of this magnitude and duration is very rare, especially in girls, and even more so in non-teenagers. The fact that she has a mum who is able to work well with CAMHS, bothers to post here, and can talk to family and friends for support, makes me wonder how on earth your dd's behaviour got so very disordered that residential units are now being discussed.

Does this ring any bells?

My husband and I have attended all the appointments together and he is of the same feeling as me that they have come back to us with a very accurate assessment of what we are living with. She has several issues going on and unfortunately we have become a family in crisis, as they put it, from living with the long term stress of it all. Her intellectual level is very high but her emotional level hasn't developed past about 3 apparently, which fits with our thoughts as she behaves worse than our 3 yr old a lot of the time! There are elements of ADHD and then also trauma issues from when she was 18months - 3yrs. Apparently one of the characteristics or symptoms of this disorder at it's most severe is that the child tries to destroy the family unit.. which is what has been happening and that is part of their reasoning for the residential treatment. It makes sure people who know how to deal with her manipulations are always on hand and we get a chance to recover ready for her to return. We would have parent therapy along side her treatment.

I'm not UK based so am not familiar with the UK system of diagnosis and treatment I'm afraid. I'm presuming our health insurance would cover at least some of the costs but we haven't got that far yet. I'm still reeling from this first bout of information!

We have thought about a second opinion but then we would have to go through 9 months of evaluation again to more than likely come to the same conclusions?

Feeling seriously overwhelmed by it all. Thank you so much for your supportive response. It's food for thought..

My son has been at a behavioural, social & emotional difficulties school for the last six months (not residential). He is so much happier there than mainstream and the whole family benefits. Like you I was horrified to start off with but seeing our son come back has been wonderful. He still has his moments but nothing like how it was a few months ago.

That is reassuring OneInEight. Thank you.

I have a sibling who spent five years in a hospital, (Mon-Fri for the last four). Hers was a MH issue. "They" said she'd never pass an exam/insert whatever awful negative is running thru your head. Twas grim.

She's now in her early 30's and you know what? She runs her own business, has a GOOD degree, some post grad quals. She also has a pretty decent social life by anyone standards, with hobbies, interests and her own rented flat. Unless you are told her history, you couldn't tell the difference between her and a million an one other "Bridget Jones" types out there.

Like anything - the RIGHT intervention, is usually one that involves huge sacrifice of some sort, is flipping hard work and doesn't sort it over night iykwim. However, even if the outcome you seek is a decade off it's still more than worth pursuing - even if you only fully appreciate that when you come out the other side.

What's being proposed isn't pleasant, I won't deny that. However if you sit down and rationally assess the potential long term benefits to your child and your wider family, it'll get easier to process.

Bochead, thank you so much for that! She would only be Mon-Fri, so I am thinking it is no different to if we sent her to boarding school. Thankfully she is top of her class at school as intellectual stimulation is what motivates her and keeps her focused, so we are grateful not to have to worry about that at this time.
PolterGoose, thanks for the flowers! I'm in Brussels.

Mariaboredoflurking.. I have only just realised that if I clinked 'this' it was a link! so I will take a look at that properly in the morning, thank you.

Can you tell I'm a novice mumsnet user?! Sorry, don't know all the abbreviations and protocols on here yet.

mariaboredoflurking that absolutely 'rings some bells'. I am having to try to understand everything in another language too so it is helpful to see something in English that seems to be what they are describing is the problem.