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SN children

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

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Original poster

What about us parents who don't take restbite are we the forgotten bunch

21 replies

SqueezyLouise · 21/01/2011 09:01

It's all in the headlines regarding restbite what about us who'd rather not take it what do we get , it was my choice to have 5 kids I had a choice when I was pregnant with ashley and I never look back to carry on with her, but neither did I no that medical staff could treat us like they do and local councils do what they want , neither did I realise u had to get a socail worker to get anything , I'm sick and blimming tierd of fighting to get things i'm sick and tired of being treated different to other parents and I dread every day coze medical staff can blame good parents for being bad parents ; who's there to stop this ( nobody )

OP posts:

2shoes · 21/01/2011 09:04

respite

pagwatch · 21/01/2011 09:04

If you are tired why don't you apply for respite?

Looking after our children is all of our choices. But asking for respite to get a break is sensible and reasonable.

Cribbage · 21/01/2011 09:14

If you need respite, ask for it. If you'd rather not have any then don't. I need the little I get otherwise I would go loopy. I don't really understand what you want, a medal?

Phlebas · 21/01/2011 09:15

I don't know what the point of this is? Surely if you need/want respite then ask for it, if you don't want it then that's okay too

lisad123isasnuttyasaboxoffrogs · 21/01/2011 09:26

Yes it may well have been your choice to have 5 children but no one ever asks for a child who is disabled. I personally don't get respite but I have a supportive family and my girls don't require 24 hour care. If you need respite ask for it, if you don't count yourself very lucky!

Original poster

SqueezyLouise · 21/01/2011 09:43

Well no I never asked for a medal and I never asked you to be funny either , but I think there's more issues than resbite at least you get it you've asked and you got it regardless of how long it's for , I'm not begging others to take my kids but the little things my little one do need she gets nothing , I had a socail worker for a hour lol the only thing she blimming offered was resbite or someone to come in and look after the kids when I got dressed and things , we do everything for our kids and apart from school we get no break and that's great but what about a stair lift , I carry her , bathing she as discolated hips I've learned her to manage slipping you ask for help for that they say go to shop and get a baby seat so she doesn't fit , , seating got it our selves , she can't get around the house in her wheelchair no help with that ,I had to complain they wouldby give her a wheelchair stick her in a buggy 4 school they said , what about medical staff accusing good parents of doin bad stuff , all this isn't in headlines , no , I never asked for bad talk , what I said was about the other issues which parents like my self are dealing with aswell , I treat Ashley as a full member of the familily and I wouldn't put her in restbite and keep
my other kids at home and you no maybe that does deserve a medal

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Original poster

SqueezyLouise · 21/01/2011 09:45

No we didn't ask for it but alot of us had choices too

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meltedmarsbars · 21/01/2011 09:49

I view respite as a "special treat" for the disabled child (they spoil her rotten! ) as well as a treat for my other kids, who can then get to do other thing we wouldn't normally be able to.

I don't understand what else you expect a social worker to offer?

Equipment to help in the home comes from Occupational Therapists. Re slipping in the bath, I use a bathmat, used to use a bath seat.

auntevil · 21/01/2011 09:51

I agree with the above comments, but i read the OP more in the light of - if we didn't have to fight so much for every little crumb of assistance then we wouldn't all feel stressed and tired and have the extra workloads that are involved in fighting. Then there might be less need for some to have respite, allowing the resources that will no doubt be slashed, to be given to those in need.
Too many departments are blase in suggesting that there is no need to worry, department x will see you right. Yes, they might do after a long fight.

Cribbage · 21/01/2011 09:53

respite
You need to ask for an OT assessment if you have equipment needs that have not been met.

rettmum · 21/01/2011 09:57

I think all you are saying is that this subject goes a lot deeper than just respite.Its about the day to day slog we have in looking after our disabled children.Its also difficult to look after other children as well as the disabled child.
Its about the day to day fight we have in getting equipment and services.Its about the crap we get when we ask for help.at the end of the day there is no help.Its about the abuse we get from proffessionals when all we want is someone to listen and not be judgemental.We do have a small amount of respite and thats our choice.Its more bother than its worth really.After packing everything up and there is an awful lot for just two nights a lot of the time the center rings and cancels due to lack of a nurse for crying out load i'm not a nurse.

Original poster

SqueezyLouise · 21/01/2011 10:06

We do specail treats on weekends with all 5 kids all under the age of 8 , it's hard to find things Ashley can join in with but we manage the boys don't miss out on anything they no we do things abit different but differents not bad , ashleys only 4 she's in school 9 till 3 that's a hell of along time not to see your kid all day so we spend the afternoons doin little bits all 5 of us and even though I
may make it sound easy there in bed by half 7 , and my liittle boy is awful with it he as global delay / dyspraxia / and other issues Ashley as spina bifida / hydrocephalus / discolated hips and she's just had a op for talipies which we took all of them from wales to blackpool to do because they refused her funding here !! You can't get a grant for adaptions and that here without ss, we've asked Physio and that for diff things and got nothing so we've made complaints , u get nothing and one thing they did offer me was resbite and they can stick it there's plenty of after school clubs around which my little boy can't go to coze theyed never cope

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meltedmarsbars · 21/01/2011 10:11

SS always do the adaptations round here - adapt bathrooms, organise special bed, hoist, ramp to door, etc.

Why are you trying to do it without SS? Physios don't offer that kind of equipment ime.

Original poster

SqueezyLouise · 21/01/2011 10:15

Well said rettmum and auntevil said it better than me lol , yes we need to stick together but I think what Rettmum said is the most important thing we struggle with I could cope if all u said was sorted it would be a diff world , I could sleep with out worrying but it won't be solved u can ask my parents they done this 40 odd years ago with my sisters nothing changes ,

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Original poster

SqueezyLouise · 21/01/2011 10:26

Well I had a sw ,when Ashley was born why I don't no it was given , she came in felt pitty on me , I told her everything about us , she played with the kids , she wanted to come out every 2 week I didn't ave time 4 that not with kids n hospital , b4 she left she asked could she look around the house first I said yes then I woundered why she wanted to and her words was ... Well now u ave a disabled kid some parents leave there's kids in there own filth ,now that may be right I don't no but I think it was bang out of order I had just spend 3 weeks in hospital with Ashley , and I didn't need that , I read her notes and she recan I only seen Ashley as a baby not a child with a disabilty well I made a complaint because that wasn't true I got brought up with sisters who were disabled but died , and one thing I learnt about Ashley is u come use to her and her disabilty by bringing her up every day and u learn there no diff to others

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Original poster

SqueezyLouise · 21/01/2011 10:30

Forgot to say that manager got sacked coze app she set new rules , plus I've also been told by medical staff somin needs to be done to ss here or somin is gonna go wrong but if I mensioned that they say they never said it

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rettmum · 21/01/2011 10:45

Yeh they never remember what they say.It does sound as though you do need an ot assessment.As far as i know you can ring them and ask for an assessment.You need to ring the social services department and ask for the ot services.You may not need a social worker.All i would say is like everything you have to fight with them and it can take ages.We have just had a two fight for a bed a 1 year fight for a shower chair and three years to get a lift put outside so we didn't have to bounce our daughter down six steps.Just stay strong in your battle for waht is right.Easier said than done i know.

ReclaimingMyInnerPeachy · 21/01/2011 10:59

I don;t get respite either, doesn;t mean that I wish that on others.

And there are those of us fighting every day to stop poor treatment of anyone.

Hopefully we on MN can help improve things for you Lou and I promised I will PM you later whihc is why I am now, giove me a few minutes

Original poster

SqueezyLouise · 21/01/2011 11:05

I think Its disgusing you had to fight for that aswell I think alot of it is down to the medical staff and council because medical staff ave been given to much power ( with child protection I mean I complained because are Physio wouldn't give Ashley a wheelchair so she accused me of avin brusing on my arm and my girls being dirty ) I didn't get told this I read it in notes it got dropped behind my back because others no me well ,app law is I should of been told when this happened I didn't a year on I found out , these perfesionals need to be sorted out and as for the council there all same tight with money , but I did her they get more money or somin for gettin more kids to foster it's discusting

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ReclaimingMyInnerPeachy · 21/01/2011 11:13

In fact, dcidsabled kids are very difficult to find foster parents for.

And whilst some med profs are bound to be bad many are also good- my own background means I have met both (parenting charity, 2 sn kids, ASD MA being studied).

Absolutely anyone worried about neglect should have said; the guidelines of where I worked states that if I had ANY concerns I would have to raise them with the aprent, either immediately or very soon after with my line manager present (for personal safety- not everyone is decent).

Can I suggest you request a copy of the notes and see what was written? you sound very stressed and upset and absolutely I can understand that, sometimes things get blown up in translartion or maybe not but either way knowing is good.

And I will get to messaging now.

Original poster

SqueezyLouise · 21/01/2011 11:48

Yes I got her notes this year I made complaints last year when all perfesionals to do with my little girl new I was pregnant even when I didn't lol , that's when the Physio app rang my hv sayin bout brusing and things but the hv said she had no probs wiv us , I got the notes and that's how I found out bout it all , I think the Physio did this because I wasn't happy she wouldn't give ashley a wheelchair so I went to her manager , nothing come of it all app because everyone else stuck up 4 us and if I didn't get the notes I would never ave known about this but the Physio mension they were avin safegaurdin meeting about us in notes I contacted ss my self in end because I couldn't sleep or anything and the head said it's nothing to do wiv em not to worry and if I needed there help we are welcome back to them but , the Physio got away wiv it which gets to me coze she apply my pregnancie and all this year plus I trust no one now ,

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