I have had our respite increased should I celebrate.............

[2shoesdrippingwithblood]

asked for 10 more nights and got 2
and omg the things they suggested.
onwe was something where some one befreinds dd and takes her out.
so they want me to allow a complete stranger to take dd out!!
what planet do these panel people live on.
as I said to SW dd is severely disabled and very vunerable.
also how would thay take her out. the can't use my van and I won't let her on a bus.
(we live in a place where it is very hilly, so transpoty would be needed)

[MannyMoeAndJack]

Any increase in overnight respite is bound to be of benefit to everyone so well done (shame you didn't get more than 20% of your initial request though!) - perhaps next time, ask for 20 or 30 extra nights initially!

Out of interest, how many nights of respite do you get over the course of a year?

Silly suggestions seem to be par for the course when it comes to respite services...

[2shoesdrippingwithblood]

I get 49 (now 51) term time and 10 holiday nights.
can you tell dd doesn't like the holiday ones.
I have always pushed for respite and I am now glad I did.
a freind has only just asked(her ds is 16!) and got 2 a month term time. they also commented about her being a coper!!

[feelingbitbetter]

Jesus wept, 2shoes! It really makes me worry that people think like that in this day and age, let alone suggest it as part of their profession. Do they live in the real world? Well done on the respite tho

[jimjamshaslefttheyurt]

2shoes, I'm running some training sessions for SW. It's on ASD, but your first post is very relevant for any disability. WOuld you mind if I quoted you (anonymously).

I think you should celebrate!

[2shoesdrippingwithblood]

no please do jimjams
it is mad, the sw seemed to think I was bing psb that i didn't want a complete stranger taking dd out.

[MannyMoeAndJack]

51 nights every term??!! Wow, that must be some kind of record for respite services!

We'll be doing well if we get 24 nights per year....

Did you start out with far fewer nights when your dd was younger, then build it up as she got older?

[jimjamshaslefttheyurt]

Who would proviide the befriending.

The NAS rang up to tell me they have a befriender who was perfect for ds1 as she liked doing xy and z (this went on for 5 minutes) and she was really looking forward to befriending a high functioning boy with aspergers (FFS). So I pointed out that he was severely autistic and totally non-verbal and after a silence the co-ordinator said 'oh but he communicates in some way doesn't he?'

WTF?

[supportman]

But befreinding schemes can work very well 2shoes, I am a volunteer with homestart and look after a little girl with CP. All volunteers are carefully matched to families based on their experiance and I was matched to this family due to the experiance I have gained through my work. I have been working with them for about 4 months now and the whole thing has gone very smoothly and they look forward to my visits.

[supportman]

But befreinding schemes can work very well 2shoes, I am a volunteer with homestart and look after a little girl with CP. All volunteers are carefully matched to families based on their experiance and I was matched to this family due to the experiance I have gained through my work. I have been working with them for about 4 months now and the whole thing has gone very smoothly and they look forward to my visits.

[supportman]

Oops

[jimjamshaslefttheyurt]

I think befriending schemes are fine if you approach a charity (our befriending experience wasn't great. just more work for me) but social services shouldn't be relying on them. If I approach SS I want someone paid to be with my family so I can demand expect a professional service. Some befrienders supply that but you can't (as a parent) demand it.

[2shoesdrippingwithblood]

years ago dd had a link family. she was about 5, it was our 3rd one, she loved them. she slotted in so well with the children, she loved the mum, and the dad was fun.
after just over a year. it stopped overnight. she was at their house one day and the next morning I had a call from ss to say she couldn't go there any more(can't give any more detais as it was a child protection thing) she has never seen them since. you try explaining that to a non verbal 6 year old I will never put her in that psoition again

I won't let her on a bus as I think they are unsafe. whe she travels in our van, he wheelchair is locked to the floor in 4 places. she then has a seat belt. on a bus only her wheelchair brakes would keep the chair still!!

[2shoesdrippingwithblood]

oh add in to it the fact that she has epilepsy and her emergency medication is pharaldahyde.

[jimjamshaslefttheyurt]

I would see befriending as an additional (welcome if it works well) extra, not a reliable source of respite.

[2shoesdrippingwithblood]

jimjams I can't risk it,
she is 13 and I feel to much has happened in her life. she has had to freinds die, she has seen freind s come and go, I can't risk a "will look good on my cv" person using her.

[2shoesdrippingwithblood]

(no offence to supportman who is a profesional)

[Mitchell81]

2shoes I agree about a befriending service, I couldn't even send DD to respite. It is not something us as a family would want. We are now in the process of getting Direct payments for us to employ someone to come look after DD still in our care though.

[2shoesdrippingwithblood]

we are lucky, dd's respite is at her school.

[Mitchell81]

That would make a huge difference. I trust her school completely with her care. Unfortunetley her school is mainstream so no respite offered.

[2shoesdrippingwithblood]

the bit they overlook as well is that her school respite has nurse on call 24/7
they always have someone trained in the use of pharaldahyde.
a stranger would not even know how to talk to her using her communication book.

[LollipopViolet]

Awww 2shoes your DD sounds like someone I could get on with! I've had things happen to me that make it really hard to trust people so I can see what you mean. I can also see your point re: meds, I admit that would put me on edge (I have a friend who's diabetic and that worries me enough!). Out of curiousity, what's a communication book?

[2shoesdrippingwithblood]

it is just that. a large full of pages of symbols(pictures) that she uses to "talk"

[needmorecoffee]

when did you start tyo get 'night' respite? Its not been suggested for us yet.
And when did she get a communication method?
Being nosey here. dd is approaching 5.