Feeling Shaken

[asdx2]

Been to see paed today regarding ds's difficulties, anxiety, depression (I'm guessing), self harm, rigidity, lack of sleep or willingness to eat, lack of speech etc etc.
Had to go without ds because his anxiety would have been overwhelming and he hates being talked about as much as talking and I and paed expected him to meltdown.
I tend to just get on with things and tbh lots of the extremes happen slowly so set in without my noticing how abnormal our life is. So having to detail what life is like is pretty depressing.
So I wasn't expecting any quick fix but I was expecting a path forward.
But ds's difficulties are way beyond paed's expertise and paed suspects CAMHS in our area haven't got the expertise to deal with ds.
Ds needs medication and therapy but he won't swallow anything new (it's taken three years to get him to take an anti histamine) he doesn't speak and won't listen to others speaking and he can't recognise emotions in himself or others.
So paed will meet with CAMHS and psychologists from CDC to see where we go from here but his gut feeling is he needs out of county specialist input and lots of it (funding??????)
The only positive is that he will press SS for support (we don't meet criteria according to SS) because he says ds will need lifetime care and they need to start planning for it now as he is 15 and ds should meet the criteria in his own right and even more so because of my having dd with autism and dh on chemo besides. So I'll wait and see I suppose.

Goodness, that's a lot for you to take in. Did you realise your DS was in need of such expertise?

I wonder if you could persuade your DS to speak via email with the Paed or CAHMS as a starting point?

sorry you have had such a shocker of an appointment. sounds like paed is trying v. hard to get thing sorted so hopefully that bodes well.

I knew he needed help and I knew his unwillingness to communicate and swallow anything new would be a problem but I didn't realise that there wouldn't be local support.
Lots of his difficulties just built up, some have been longterm and we have learnt to cope others have been a minor difficulty that have taken on more significance.
He has never eaten well but it's a problem now he will need medication and he won't swallow anything different.
He has never been very talkative but it's a problem now he mostly refuses to talk.
He has always found interaction difficult and now he actively avoids it.
He has always been very rigid but it's a problem now he is becoming more and more resistant to any change.
We live a life that we have just got used to tbh it's not until I told the paed that he has so many difficulties that impact on life that I realised how abnormal our life is.
I knew there wasn't going to be a quick fix but I did think the paed would have a path of action in mind.
Feel a bit shell shocked and guilty I think that I didn't act as soon as each problem started but then again there are so many that I'd have been at the paeds weekly.

Hi Asdx

Sorry to hear you'v had such bad news from the Paed. Sometimes we're all so busy just getting though the day we don't notice when situations are gradually deteriorating.

My DS was also 15 when his problems came to a head and he needed residential care, so I have some experience to share with you.

The first and most important thing is to keep him in school. If he leaves school he is no longer the LA's responsibility.

The help that he needs can only be provided in a socio-educational-health setting and that's what the Paed is trying to set up - it's called a tripartite funded placement for which the NHS, Education Service and Social Services all chip in their funding.

These are mainly independant sector settings that provide this comprehensive care but they are are very, very expensive - think upwards of £80K per year. You can see why the SS are telling you that you don't qualify.

Don't believe them.

Getting him help very quickly is important as he approaches the age of 16. As long as you keep him in school he remains the responsibility of the LA and his Statement (if he has one) remains in force, so it's up to the LA to identify a suitable placment in conjunction with the SS and NHS.

Unfortunately the Paed cannot secure this placement for your DS on his own. It'll be up to you to press all 3 sides to make that funding available.

To do that you'll need to prove need. The paed should put his concerns in writing to the LA and also to SS. Paeds are very good at telling you what's needed and very slippery when it comes to committing themselves in writing - their employer-the NHS discourages them from doing so as they would have to pick up the bill - so you can see why you'll have to get really involved to make this happen.

So I'd start by asking the Paed to produce a written statement of your DS's difficulties and his recommendations for a suitable placement. He should send copies to LA and SS.

You, at the same time, should be requesting that the LA review your DS's Statement and submit as evidence, the Paed's letter.

You should also be requesting an SS assessment of your son's needs in light of the Paed's report and also an assessmnet of your own needs as a carer.

At 15 he should have had a Transition Review. That's when Ed Pysch, SS, Paed, LA, Head all get together to plan the future for your son post-16. It's called a multi-disciplinary review and should be called by the Head of your son's school. If you haven't yet had that you need to write to the school and remind them.

You'll also need to strat investigating what provision exists for him - placements such as the Priory Group of FE Colleges and the Wing Centre in Hampshire.

This will be a difficult placement to obtain so you'll need to start immediately, investugating, gathering the evidence of need and kicking those who should fund it, as they will undoubedtedly drag their heels.

I am so sorry that you are faced with this while your DH is so unwell.

Best wishes