This is a plea for support for my daughter, I am in the process of another relapse which has been ongoing since the 23rd December… I have Two daughters aged 8 and 3, they both stayed with my parents over Christmas and New Year whilst my husband stayed at home to care for me once I came home from hospital. My husband is now back at work as he is hourly paid and only gets limited time off, he has adjusted his shifts to spend as much time at home but the mornings my 8 year old gets herself and her sister up, dressed and fed… I am lucky to have a great support network of friends who help with school runs and my childminder is great as she will pick my youngster up. My question is where can I go for help in the mornings to give my daughter the support and relief she needs x
Hi, I agree a social worker may be able to help, but they will take time doing assessments etc. Have you spoken to your childs’ school? Some schools have good family support services, who go to people’s homes to help get children to school. They are usually for children who are reluctant attenders, but they may help out while social services do their assessments? Also, is there a group of Home Start in your area? They are a voluntary organisation who work with families for all sorts of reasons - yours would be a prime candidate. Another good voluntary organisation is Young Carers, who operate nationally. Google should help find your local group. My husband has MS and although my daughter is not his primary carer, she benefits from the support given by Young Cares, as it gives her a place to speak about the impact MS has on her, to someone independent.
Best of luck with everything and I’m sure you are very proud of how helpful your daughter is. x
…could not agree more with ‘Daisycrazy’. We too have a daughter with severe learning difficulties and we are therefore more used to asking for help.
As you do not seem to be familiar with Direct Payments (a system whereby you act as an employer, just on paper, for an assistant in your household), I would contact Social Services/ your MS nurse/ your GP/ your local MS branch/ Penderels?
Just let us know if you make any progress, will be happy to help if I can.
Regards, Jos
Hi all
Would like some advice. We have a 14 year old daughter with severe learning difficulties, I ‘have’ SPMS. I have worked, as a carer (still sort of mobile, only ‘long term memory department’ of my brain seems to operate properly…), of which the last half a year for a renowed institution for disabled young people. Although I did inform them about my condition, they seemed to assume that if I could still walk into their offices, and give the right bla bla answers with regard to ‘Why do you think you are the right person for this job’ etc etc etc etc … etc etc… then there should not be any (big) problems. Of course I did not tell them in detail about my fatigue/ bladder/ cognitive/ movement etc issues (just said I had MS and had had this for many years, as my lack of ‘proper walking ability’ is obvious) as this was still a job interview? Unfortunately I was more or less pushed into a corner after ‘an incident’ with one of the students, and this was truly raked up to get rid of me, this in spite of the assistance of a union rep (…) (I assume that they suddenly realised what they were dealing with! - Risk Assessments, Insurers!!). I had already been pushed out of a previous 3 year carers job because I questioned the shifts I had to work which were very unreasonable (this in spite of a union rep…, do you have the impression that ‘we’ are too labour intensive for unions under the present economical circumstances??), especially for a MSer WITH an unvolunteerily demanding disabled child at home. I have now made up my mind as I do not seem to get anywhere with ‘my’ DEA at the job centre… I now want to be ‘declared’ unfit for work as it puts too much unnecessary extra strain upon my family!! I then hope to do some (allowed) volunteering work. I feel a bit more at home here as the previous writers must recognise the extra strain that comes with a disabled child. As I said, any advice or (positive) reaction would be welcome.
my social worker suggested help from children services fir my 13 yr old daughter shes struggling emotionally to cope, they done an assessment on her and are going to put her in touch with other young carer, I feel she needs to join a group that can empathise with what she s goin through
Hi, sounds like an assessment for Direct Payments could be the answer, eh?
I have been using this service since last June.
I began with 8 hours a week. It is a mean tested service, but i don`t have to contribute. I now get 10 hours a week and have just been assessed as needing more. I am waiting for the new care plan to be arranged.
With DPs, you can choose your own carers. I now have 3 plus my hubby (or will do soon).
At first look DP`s can seem very daunting, but after a settling down period, it becomes easy.
is there anything you would like to ask me about DPs.
luv POllx