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AIBU?

to think the professionals should be giving advice at least rather than wanting to hospitalize my special needs son??

27 replies

devilishmangerdanger · 27/12/2012 19:48

My son has special needs with an obvious disability. However his life is limited to the house or car. He has severe anxiety and issues disclosed but never supported.

AIBU to think, why can't they help these issues instead of keep trying to break the habit so to speak with a hospital stay?

Never mind that, the stays do not break the habit and he comes up with more and more issues that need sorted instead.

Please be kind, but if anyone can think of how to help before he is took away, let me know? TIA x

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SantaIAmSoFuckingRock · 27/12/2012 19:53

you need to give more info about what his needs are before anyone can comment.

i also wonder why you posted in AIBU expecting kindness. post this in SN topic if you want proper advice on SN.

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CatchingMockingbirds · 27/12/2012 19:54

Why is he being hospitalised and by who?

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peaceandlovebunny · 27/12/2012 19:55

wishing you solutions.

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mercibucket · 27/12/2012 19:58

The SN board is a better place for this. You could re-post or ask mumsnet to move it. Aibu is not the place for 'gentle' replies. Hope you find some answers.k

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mercibucket · 27/12/2012 19:58

The SN board is a better place for this. You could re-post or ask mumsnet to move it. Aibu is not the place for 'gentle' replies. Hope you find some answers.k

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devilishmangerdanger · 27/12/2012 19:59

I post here as there's more traffic, my posts on SN are sometimes overlooked. I'm not expecting kindness but feel very isolated and emotional so maybe it's best I get this pulled.

FWIW he has loads of needs but is primarily down syndrome. The social worker thinks it's best for him to break his habits. His habits are his needs.

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SantaIAmSoFuckingRock · 27/12/2012 20:03

if you are feeling emotional then definitely get this pulled from AIBU.

this isn't an urgent response needed thread so you dont need tonnes of response.

repost in SN and you will get replies from people who know what the issues you face are and what help and support you can get. Smile

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Pantomimedam · 27/12/2012 20:06

I hope you get some responses in SN that can help you with what sounds like an incredibly difficult situation. Are you in touch with any support groups for the parents of children in similar situations to your ds?

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colleysmill · 27/12/2012 20:08

Have they given any reason why they think hospital is best? Are there services he can access from inpatients that aren't available as regularly as an outpatient?

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devilishmangerdanger · 27/12/2012 20:08

Iv'e asked for the thread to be pulled but not moved.

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devilishmangerdanger · 27/12/2012 20:10

I am Panto but he has other issues and doesn't fit iyswim.

Never thought of that Colley, will find that out, thanks.

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WottingerAndWottingerAreDead · 27/12/2012 20:11

OP can you say a little bit more about your sons needs?

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devilishmangerdanger · 27/12/2012 20:14

Apart from the obvious medical, heart etc. He also has social phobia, school phobia, autistic traits and PDA traits. He is being seen bu someone in Jan for the latter which we all hope will help. However he refuses to dress, is naked all the time, and the only time he will leave the house is for a drive (obviously with PJ bottoms on then). Thats his life in a nutshell. Isolated, in turn so am I.

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lunar1 · 27/12/2012 20:15

What are the habits they want to break?

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TheNebulousBoojum · 27/12/2012 20:15

Devlish, you've posted quite a bit in SN already, under your usual name and your Christmas namechange, and had responses.
What do you need that you haven't found yet, and are there any other forums you could post on that will have more precise advice than MN SN?

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devilishmangerdanger · 27/12/2012 20:15

sorry everything else outside of that causes him huge anxiety. He doesn't like the noise, crowds, kids, people, places etc.

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devilishmangerdanger · 27/12/2012 20:16

I think maybe it's the brick wall we keep hitting, trying to get him help.

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lunar1 · 27/12/2012 20:18

I'm guessing he has been in hospital before and this gas not broken his habits. Sounds like he needs to work on these things from home and gradually getting him out, do you have any support op

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WottingerAndWottingerAreDead · 27/12/2012 20:19

OP how long has he not been dressing? Are you being offered any respite type help?

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devilishmangerdanger · 27/12/2012 20:19

Iv'e done all the downs groups. I suppose I didn't want to post in SN........thinking 'here she goes again'.

Feeling a bit down due to holiday help not coming etc. I suppose.

Then the SW tried to go to a drive thru with him today, no such luck and out this came again.

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WottingerAndWottingerAreDead · 27/12/2012 20:19

OP how long has he not been dressing? Are you being offered any respite type help?

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WottingerAndWottingerAreDead · 27/12/2012 20:20

Sorry!

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devilishmangerdanger · 27/12/2012 20:20

I will be back if the thread is still here, I have to do the usual ritual drive.

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RowanTheRedNosedMumsnet · 27/12/2012 20:23

Hi devilishdangermanger

We've sent a reply to the email address you have registered with us (just in case you didn't see it). We're happy to leave the thread if you're finding it useful.

Thanks
MNHQ

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AtoZandbackagain · 27/12/2012 20:57

Devilish

I hope you do keep this thread going.

It would be better to have a discussion with you on the SN Boards but I quite understand if you don't want to move there.

I've read all your previous threads. From those I think I understand that you have a 12 year old son who has Downs Syndrome. He was issued with a Statement of Educational Needs at age 2. For the past 3 years he has been unable to attend the special school that is named on his Statement and has had some home tuition from the LA.

You didn't think the AR process was unhelpful and feel that there is no school that is suitable for him.

Is that it in a nutshell?

What we usually advise on the SN Board is to break the problem down into manageable chunks that can be prioritised and addressed.

If a child has not been able, for the past 3 years, to attend the school that is stated in his Statement of Needs, something has clearly gone very wrong.

Every child is legally entitled to a full-time education that is 'suitable for their age and ability'. Your son is not receiving this. The LA seem to be keener on containing te issue by providing some (limited) home tuition than providing a suitable educational placment that he is able to attend.

It's difficult to advise without understanding the underlying issues.

You say that there is no school he could attend? Why is this? Are you saying this because there is nothing suitable locally and you do not want him to attend a residential placement?

Why is he unable to attend the school named in his Statement? What are the barriers that are preventing him from attending?

When was his Statement last reviewed? As he's been out of school for the past 3 years I would have expected an amendment to Part 4 (named school) to have been discussed at his AR - after all the review is supposed to identufy changed needs - he's effectively being told to attend a school that he hasn't been to for 3 years!

As his Statement was first issued at age 2, is it time for a full reassessment of his needs to be undertaken? I think it is. A Statement that was issued so long ago, and without proper annual reviews having taken place in the interim, will probably be pretty useless by now. Parts 2 and 3 need to be revisited to ensure they have identified, assessed and provided support for all his disabilities. Have you asked for a reassessment?

In 3 years time he will be in Year 9 and facing the most important Anuual Revuew - the Transition to post-16 and adultahood. Plans need to start being drawn up for how he will be supported in the long term. That's not possible if the Statement is so out of date as to be meaningless. What would you like to happen in the long term i.e. what level of support, provided by whem and where?

Have you ever contacted any of the organisations such as IPSEA, SEN SOS, any of the Downs charities to see what help they can offer?

It sounds from your posts that you are getting some help (e.g. the social worker trying to help him for a drive) but the little help you are recieving is the wrong sort of help, very misdirected and not achieiving anything.

What you need is targetted help designed to meet specific needs. It would appear the LA would rather stick another plaster on and continue to ignore your son's (probably very expensive) needs.

As I said, it's very difficult to advise without knowing more about how the situation you now find yourselves in came about.

It would good if you did feel you could 'come downstairs' to the SN Board where we (and other very knowleageable SN parents) could try to talk this through with you and help you devise a plan of action.

Best wishes

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