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SN children

Here are some suggested organisations that offer expert advice on special needs.

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Original poster

I miss my baby (well o.k she's eighteen) and wish I could bring her home ....feel so low today!

16 replies

PellMell · 05/03/2008 10:30

I know I can't give her the care she needs.
She lives in a new residential unit and still after nine months no other young people have moved in.
I feel like we made the wrong decision and rushed to agree to this placement at a time of incredible strain....for her protection.
I had another baby after she had been my only child for 16 years.
I never could manage her and things were much harder once I had a small baby to protect.
I just wish I'd had more choice and miss her so much.

OP posts:

oililymad · 05/03/2008 10:48

i am sure you made the right decision for you and your family. its obvious you care very much.
can you visit?
or take her out for the day or even a weekend at your house.

why have no other people moved in? i thought provisions like this were always oversubscribed.

don't beat yourself up over it.you have to protect your babies (both of them)

big hugs

Original poster

PellMell · 05/03/2008 11:11

She does come home for visits...weekends etc
They are hell actually
She's on her own because she entered a new unit after funding was agreed in principle in the previous financial year.
Once she was in, all the other referrals got put on hold. Social services had overspent their budgets and had put a cap on spending.......then the most local counties have begun to merge so none of them will cough up until the merger situation is finalised.
sorry for the boring tale.

OP posts:

Original poster

PellMell · 05/03/2008 11:15

I really didn't think I would hand her over for her to be on her own.
She used to go to a busy special needs school
Go to respite care and see lots and lots of kids
I worry about her so much
Yesterday I had to phone up and demand we be given a named social worker because since moving from child to adults social services in novemeber....we have had no contact or reviews etc.
She shouldn't be on her own for this long surely.
Now the manager of the unit has left too

OP posts:

2shoes · 05/03/2008 11:32

pellmel. how sad. I can understand how much you miss her. could you get her moved?

Original poster

PellMell · 05/03/2008 13:04

I think the first thing for us all to do is go back to the beginning and outline what her needs are and if this place can deliver.
I can't keep telling myself and others that it has the potential to be a really good unit.
We had/have nothing to compare it to though.

I am really pissed off with all people in high places today........fuck them all. When I dare to think how many (hundreds) of proffesionals have eaned their livings from my dd's exeptionally special needs,in whatever capacity, I could scream.
Now there is not one proffesional who has any background knowledge currently visiting,enquiring, working behind the scenes.
No-one gives a toss about her.
All those bloody meetings ,reviews, hours discussing the minute details of her/our lives from the moment a special need was identified are history and bollocks.
It amounted to nothing.
Just used up lots of time when I could have been catching up on sleep etc
A call or enquiry of " hi pellmell, how is dd getting on" would be nice.
People don't aknowledge that she exists

OP posts:

yurt1 · 05/03/2008 14:35

awww - did you used to post under a different name? I was wondering how you were getting on if so.

Phone up and create merry hell. It's not acceptable.

Are your SS holding on to place someone else there? If so tell them that you'll be asking for her to be moved to provision X if no other residents are placed quickly.

For comparison I know someone using a brand new resource (which looks fab incidentally) and although it's slow (mainly because of SS refusing to fund the placements) new residents are moving in.

GillianMcPoo · 05/03/2008 14:38

((PellMell)) No experience (yet) as DS is only 7 but I feel for you. (((hugs))))

(It's ShinyHappy btw)

FioFio · 05/03/2008 14:40

This reply has been deleted

Message withdrawn

Original poster

PellMell · 05/03/2008 20:24

yes I did used to post under another name
its all a bit mad isn't it?
The chain of events happened like this.

I had a baby and at last my cries for help in dealing with dd1 were heard....not for her or my protection really but for the new born baby who was actually physically harmed by dd1.
We were pressurised by the threat that if we didn't accept this offer all the places would be gone and she would end up in nothing more than a care home (which included elderly) on the other side of the country.
It is about an hour and a half away from us.
I had never felt so torn in all my life but the pain was eased by the knowledge that she would be in a small group home with lots of activities and focus on life skills, independance etc. She was assessed as requiring one to one indoors and two to one in the community.
The day we moved her in we realised no-one else was moving in too.
Then we learned that the manager had decided not to accept the post after all.
So it was managed by a series of senior or area managers with no continuity.
A new manager was employed 3 months ago and she has now decided to leave too.

I obviously cannot bring dd home but it's not like buying a car or house. You can't go around and pick a specialist transitions unit for young people with complex psychiatric and medical illness.
I still feel so utterly lost.
My gut is she needs to get into a home that is fully operational with a good team of staff etc.
I regret letting her go there without having more options discussed with us.

OP posts:

yurt1 · 05/03/2008 21:13

I still think you need to get SS round the table (yes yes I know) and really let rip. If the home was half full with permanent staff do you think it would be good? If so then stick with it but in the meantime really create with SS.

Do you get Communication magazine (the NAS one) they are full of ads for adult provision. Not all will be suitable for your dd of course, but some are and you could perhaps ring and talk to one of the managers for advice. I met the Coombe House guy (run by the Priory) and he seemed really keen to help and very knowledgeable. Coombe House takes people like your dd - I suspect it's completely the wrong end of the country for you, but I'd really recommend talking to him. He was inviting parents to do exactly that - even if they didn't want their children to go onto Coombe House.

Original poster

PellMell · 05/03/2008 22:15

yurt
thankyou so much
That is really helpful.....It gives me a little bit of comfort to feel I can actively do something

OP posts:

chonky · 05/03/2008 22:26

pellmell - really feel for you. Have everything crossed that things get sorted for you and your dd as quickly as possible.

yurt1 · 06/03/2008 07:31

oh I know what you mean pellmell. DS1 is gong through a very bad stage. I've been up since 2.30am with him and just knowing that residential is an option makes it easier to deal with somehow.

yurt1 · 06/03/2008 07:32

Do talk to the Coombe House guy though he was lovely when he came to visit ds1's school and they do take the complex and challenging cases.

yurt1 · 06/03/2008 07:32

I have my sight set on it for ds1 at 18

TotalChaos · 06/03/2008 08:51

I know very little about such things,but hope you can sort things out so that your DD has more company in her residential unit, it's such a shame that SS haven't followed through on their promises.

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