Things are worse

[florrie]

Just to inform you those who are interested, that things are getting even worse despite Mps involvement Social Services now want to put my son is a residential setting with mentally reatarded people which i do not feel is appropriate for him as he has been so completely independent for so long, where he won't be able to mix his music, his main interest at present, and that all his idiosyncaracies ie sleep disorder, refusal to use to toilet used by others, smell of others, etc they don't understand his difficulties in , commuincating and that this is likely to lead to agression as a result, in fact they don't understand anything at all, i am truly staggered, as we had and excellent psychologist and paediatrician when he was younger.

 

I don't know what to do, I feel I've made things worse and feel jake will have a breakdown or worse attack someone and injure them, and I just see no point continuing to fight, because i haven't got the skills and they tutn it back on us awkward unreasonable, bad parenting etc.

 

I t will also be a long way a way and my ex partner is going along with it as he doesn't want jake with him and I can't cope, I have offered to have him with me but he refuses.

 

I am sorry this is so negative, or that I feel so negative about this I will write again only if I have something positive to say

[Brook]

Florrie, <'>

 

I'm sorry I do not have any advice, I'm sure someone will be along soon who has.

But I just wanted to say, dont apologise for being negative and certainly dont wait until you have something positive to post, this forum is for support to share the good times and the not so good.

 

Take care

 

Brook <'>

[florrie]

Thank you Brook, I just wanted to add that |I hope I didn't offend anyone by using the term "mentally retarded", as it is not very nice term but i could n't find a better word to describe what I mean, it is just that jake will feel that that is others perception of him. All he needs is a flat or bedsit near home, preferably with asd trained support worker to check he is coping which nas regional director has agreed to train, but they go from the sublime to ridiculous, She was horrified when ken suggested that she understand the difficulties associated with asds and said she did. He could do with some support into a job he can cope with, but all they want to do is send him on courses on how to get a job, he has auditory processing difficulties and limited verbal ability, he wouldn't understand it.

 

they don't listen to anything I have told them, and i have tried really hard to be tolerant and that it is not their fault but I wish I had never bothered contacting them

[annie]

Hi Florrie <'> <'>

 

Please don't blame yourself for what is going on at the moment. Everything you have done has been done with good intention.

 

I'm sorry I do not have any advice, I wish I did. What is happening is a result of people dealing with something that they have no knowledge of.

 

By the way, you haven't offended me.

 

Annie

<'> <'>

[oracle]

Florrie <'> <'>

 

It just proves how little they understand people with AS and how they are determined they will fit in where they want them to fit in. Who cares about what it is doing to the person

 

I am very angry and fed up myself at the moment with the wholse system and the way it is being allowed to treat our children and adults with AS.

 

Carole

[call me jaded]

It's a shame your son won't live with you. Actually maybe not, if you are having a hard time your self. The only thing you can do is to be there for him.

 

Like Carole I'm getting very annoyed with adult services right now. Care plans that don't take anyone's wishes into account, just slot them into a make-shift badly fitting facility because it's vacant [i wonder why?].

[nellie]

Oh Florrie, <'>

 

I am so sorry, you must feel as if your battering your head against a brick wall.

 

The fact that Social Services have recognised that your son needs support and are prepared to offer it, means you have one the first battle. You now have to ensure they give him the right support. I presume they haven't had any ASD specialist advice.

 

You could request your son has an assessment. Ideally, a service needs assessment from an ASD service provider, this would show what your sons specific needs are and how they should be provided for. The problem is getting Social Services to request this assessment and pay for it. If they agree to have an assessment done they should agree to provide the provision in the assessment.

 

It may be the case that the provision recommended is not what you or your son wants but at least you would have an expert to argue your case.

 

You can PM me if you want to discuss this further.

 

Nellie <'> <'>

[baddad]

Hi Florrie -

 

<'>

I can fully understand why this is such a difficult time for you, and you have every right to feel 'negative'... Don't feel you have to avoid us because of it - all these members add up to one HUGE pair of shoulders, if you see what i mean.

I think Yoda nellie's making a lot of sense (first time for everything ): You've won a very big battle in getting SS to recognise that the need exists, and by acknowleding that they've actually empowered you to take the next step in ensuring that the provision they offer is appropriate...

Obviously I know nothing about the provision they HAVE offered, but I wouldn't discount it because there are people with learning disabilities there (if that's what you meant by mentally retarded). If the ACCOMMODATION is private, and the support on hand appropriate, it could well be a good starting point for independent living. Go along and have a look, and if you think it could be useful from that POV make the best of it, while putting as much pressure as you can to ensure that it's acknowledged in the care plan that opportunities for more independent living are explored at every review meeting.

Without wishing to cause alarm, you should keep in mind that your own involvement will actually be less 'important' (in Social services/Care Manager's eyes) as time goes on, so you'll need to do as much as you can as early as you can to get your own concerns addressed. In theory, this is quite a sound philosophy from SS POV: parents aren't necessarilly the best /most objective advocates for their kid's independence. In reality (as others have pointed out), it can actually be a major excuse for dealing with parental objections when people are placed in wholly innapropriate settings... Get in early, keep the social worker/care manager 'sweet', and stick to your guns...

Very, Very best

BD

[helenl53]

Hi Florrie

 

I can't help you practically, but please don't feel that you can not share negative feelings with us.

 

Love

 

HelenL

[Kazzen161]

Have you heard of person centred plans?

 

try www.pcp-in-hampshire.net.

 

It is where the person can say what he woudl like, and then plans are made of how to achieve them. They are not done by SS, but apparently they are the in thing and therefore can be used to put pressure on SS.

 

Karen

[CarerQuie]

I might know more soon about this because I'm going on a 2 day course in Person-centred planning.xx

[florrie]

My ex partner Ken took jake to this home yesterday to have a look, which he thought he was being offered and it turned out to be an interview for a place among 4 people which we were not informed of, and jake was turned down, the uncertainty and anxiety this has caused makes me really angry. I've tried to be tolerant and to accept it is not their fault but I can't any more because they refuse to listen.

[florrie]

Thanks everyone for advice, I will discuss it with Ken who is dealing with most of this, I don't really know what to do, but I do know what works and what doesn't.