General Chat

Thanks for that Sharon, I will download one today and get OH to fill it in.
We are going to give it a go and see what they say,
Hopefully they will say yes as we need things for Kieran which we can't get off the OT as for some reason they won't allow us to have certain things ie:- a stair lift as they have always said that we don't qualify to get one for some reason which annoys me as Kieran is getting to big and heavy to be carried up and down stairs.
I am not sure if we have a carers centre near us but I will have to look into it to see if we have got one.
When we applied to them before Kierans community nurse helped us to fill the forms in.
Lisa x

The Family Fund is open to families with children and young people aged 15 and under who have a severe disability
The family must be resident in the UK
Families whose income is entirely from benefits are eligible for consideration
The Fund can consider applications from families whose gross earned income is less than £23,000 (£25,000 for families in Wales) excluding overtime and bonuses
Where savings are less than £18,000

You can download app form here

http://www.familyfund.org.uk/newsite/libraryContent.asp?showAll=true§ion=00010010

I'd go for it Lisa, I know they can only help as number of people each year due to the money they have. So its worth trying each year.
Do you have a carers centre in you town? We have one in coventry & they are fantastic and should be able to help.
Sharon x

We are going to get the forms next month and apply to them and see if they refuse us ot not,
We are on benefits as I can't work due to me having a back problem which i was born with and my OH is Kierans carer.
I still think that they should have helped you though Shirley
Lisa

They used my OH salary plus mine. (I have to work to keep us above water). We have no benefits apart from aimees DLA (high rate) and ICA which I get. I think if you are on benefits its a different story.
shirley

hi lisa please apply they told me your more likley to get help whilst claiming benefits
hi shirley do you think thry went on your partners earnings, im presuming he works with buying a bigger house, because of that you should of got help, as you needed to get a bigger place x

We last applied to family fund trust about 4 years ago Shirley.
The income we get is middle rate DLA, mobility and carers allowance plus our other money so they will probably say we earn to much as well.
I am sorry that you was turned down for getting the help you needed, It is so wrong.
Lisa

Lisa,
I don't know how recent you applied to the family fund but it is now means tested. We applied and got turned down as we earn to much!! Have a laugh I'm only allowed to earn £84/week because we get paid Invalid Care Allowance of £48/wk for looking after aimee and that is our job. I could work more hours at her school as a supply TA but keep saying to them I cant earn that much money!! People just dont seem to understand the logic behind it.
Hope you get it sorted soon. We had to move and buy a house big enough to build an extension downstairs for Aimee to sleep in. Again means tested and turned down for help.
shirley

Thank you Puss, I might just apply to them again.
And thank you for going to keep an eye out for any stairlifts in your paper.
We have to carry Kieran upstairs to be bathed and taken to bed and to be taken down in a morning.
Lisa x

lisa try the famil trust fund you can apply yearly untill child is 16, if you want i can keep a eye on stairlifts in our paper often seen them for a 100, if kieren isnt walking how the hell is he supposed to get up and down safely, makes my blood boil xx

n
xx

I think Kieran sees an OT at school puss, we used to have one who used to come to our house to see what things we needed for Kieran but she said she didn't think we needed a stairlift for Kieran.
We have only ever applied to family fund trust once and they where fantastic.
I am sorry to hear that Sophie is very unsettled at school.
When my daughter Rhiannon was in her concert she was really upset afterwards and she just wanted to go home with me and she got really upset the following day when she found out that they where doing it again for the rest of the school.
Kieran was really violent last year when he had been in his concert and he pulled my hair that much and his grip was that tight that 2 teachers had to prise his hands off my hair.
Kieran can be very violent at times, he nips, bites, punches, kicks and pulls hair.
People say he doesn't understand that what he is doing is wrong but he does, he started been nasty to other children at school as well and they asked me what they should do with him when he is naughty so I said do what you would do to other children who are naughty, I keep telling them that I don't want Kieran to be treat any different from any other child.

Lisa x

Lisa I would ask about an Occupatenl Therapist & speach & language. Sophie used a mix of PECS and Makaton which worked quite well. Now we have to write things down for her if she becomes frustrated as her reading skills are fantastic. Also have you applied to Family fund? they are very helpfull.

Sophie is very unsettles at the moment school routine has gone out the window which is causing her mega problems.This morning she was awake at 345am & wouldnot go back to sleep. She was quite violent again last night and spent a lot of time biting her hand. As lovely as it is to see all the children in the concert I sometime wonder how it affects the other children

Sharon

lisa have you got a occupatenl therapist
if not try them, ive seen a few stair lifts for sale for 100 pound round here but i agree the council should give you one or the OT xxxxx

Kieran is the same with his toys Puss, when he does open them he will play with them for a while but then when he gets fed up with them he starts throwing them and a lot of them do get broke.
I think that what you do by giving your son money is a fantastic idea,
Kieran never knows what day it is, he doesn't understand why we have a party when it is his birrthday or anything.
He gets really frustrated that he cannot walk when his brothers and sisters can.
And really angry if we don't know what he is trying to tell us, as when he uses Makaton he gets the signs for things mixed up.
We was told Kieran would be walking by the time he was four yet he still isn't walking and he is 7 in January but no-one seems to be concerned like I am.
Kieran can only say 2 words which are bye and dad.
We have been trying to get a stair-lift fitted in our house for 2 years but have been told that we don't quaify for one which annoys me as Kierans cousins mum had a stair lift fitted in her house even though her son can walk and can get up and down stairs aand she has never used hers.
Sorry to go off talking about christmas but I am just so annoyed how we can't get anything for Kieran to help him come on.
Our doctor has even taken Kieran off his inhalers saying that he hasn't got asthma anymore, but I wish that they where here on a night sitting up with him when he is really bad with his asthma.

Lisa x

my son, dosnt feel anything for xmas either infact when he was younger and undiagnosed, he would have broken everyone of his toys by the end of xmas day, ive been giving him money last few years which he spends on musical stuff
this year the day before his birthday i asked him what day it was tomorrow (his birthday), he said he didnt know, and the other day he asked if we had had october yet.

I think the smiley system that you use is a really good idea, My eldest get a reduction in pocket money if they mis-behave.
All of our children have always been treat the same as well.
Kieran doesn't really understand about the changes going on at his school, he wouldn't have known that the dinner they had on Monday was an Xmas Dinner and he doesn't realise that the plays that they do are xmas plays.
To be honest I don't think that Kieran understands much about christmas but I am hoping he will want to unwrap his presants this year as he didn't start opening his presants until 4pm last year.

Lisa x
Are you and your children looking forward to christmas.

We use a smiley system for Sophie, if she is does smething which is not allowed she will get a sad face for the day (which she hates) if she has a week with no sad faces she gets a treat ( in replacement of packet money). This works really well for us, we use various charts and timetables for different things. Oue eldest gets a reduction in pocket money, so different methods but at the end both treated the same.
A question if I may, How are your children coping with the change at school due to christmas and the fact that christmas in nearly here?

I never hit any of my children as I vowed I would never be like my mother who used to beat me more then once everyday and most of the time it was for no reason, she was also the same with my elder sister.
When my children misbehave they get made to sit on the stairs for a minute for every year of their life.
People have called me cruel for doing that to Kieran but they don't think it is cruel when I do it to my other children, but when I ask them why they think I am cruel for doing it to Kieran all they ever say is because he is downs and he doesn't understand but he does understand a lot more then people realise.
He knows right from wrong just like the rest of my children.
I am pleased that your children are ok Kemp,

Lisa little white snowflake Thank you ...my children are great ....


My second one is home from uni and he saw this thread ......he says
What is normal?

he is studying Psycology and there is no where that REALLY tells you what normal is ........

up untill recently my step dad used to say a good thrasing never hurt anyone, dont think he has noticed his own problems in life due to being whipped with a branch when he was younger, hitting a child with autism spectrum or any child is shoing that it is ok to hit.