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Difficult times

lisaann76
lisaann76 Member Posts: 13 Connected
I'm a disabled mum of 3 autistic children .
Finding everything to much to bear.
No services for my daughter to support what I'm going through 
Suffolk support is ridiculous. 

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Comments

  • poppy123456
    poppy123456 Member Posts: 28,583 Disability Gamechanger
    Hi,

    Have you referred yourself for a needs assessment? Doing this there maybe some help out there for yourself. See link,

  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    Hi @lisaann76 and a warm welcome to the community!

    I'm so sorry to hear that the support in your area is lacking so much, and that you are finding things really difficult at the moment.

    How old are your children if you don't mind me asking? This will just allow me to provide you with the most relevant information. :)
    Scope

  • lisaann76
    lisaann76 Member Posts: 13 Connected
    My children are 8,12,15
    All autistic. 
  • lisaann76
    lisaann76 Member Posts: 13 Connected
    Been waiting for assessment with social for 3 months
  • paffuto10
    paffuto10 Member Posts: 388 Pioneering
    Hi @lisaann76 and welcome  :)

    Sorry to hear you're struggling and no support. 

    Are all children in school if you don't mind me asking? 

    If you are having difficulties with school, we found IPSEA very helpful with our son (severe autism) 
    He's adult now and in supported living but I still remember the struggles. 

    Must be extremely difficult with three children with autism. 
    Keep posting on here and having a look round the forum, I'm sure you will get some good advice, support and understanding. 
  • lisaann76
    lisaann76 Member Posts: 13 Connected
  • Seanchai
    Seanchai Member Posts: 411 Pioneering
    I,m so sorry to read of your plight Lisaann , its hard going with one autistic child , never mind three . I,m afraid you are a victim of cuts from our esteemed government , the quicker changes are made the quicker we will all get the help we require. I,m afraid i have no practical help for you apart from praying for you and your children but i,m sure Scope experts will give you ideas on where you can get help ...good luck .
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    edited November 2019
    Hi @lisaann76, thank you for that information.

    Would you mind telling us how long your children has been diagnosed for? At Scope we have a service called Navigate that supports emotional support to parents who's child has received a diagnosis within the last year. Here is the list of our family services.

    Also, do your children have an Education, Health and Care Plan (EHCP), if not Scope have lots of information about the EHCP process and making appeals that you may find helpful. An EHCP stays with a child until they are 25 and is transferred when they go to high school. Are they currently getting much support?

    Also here is some information about Family Fund, they are a charity who provide grants to families who have a disabled child. The support can be practical but it can also be days out for the family and respite type things.

    I am tagging @SparkleSheffieldAutismAdvisors who is our amazing Autism adviser.

    Please do keep us updated and let us know how you get on! :)
    Scope

  • lisaann76
    lisaann76 Member Posts: 13 Connected
    My two boys have been diagnosed for about 3 years,but my daughter only got her diagnosis 3 months ago.
    I didnt see as many signs in my daughter but the school picked up something was wrong with my daughter. 
    It's been even more difficult lately coz my multiple sclerosis has worsened and I'm now in a wheelchair. 
    Making everything more difficult. 
    I've got echp for the boys and had to go to tribunal to get them in specialist schools .my daughters echp has just started ,but finding it hard to do it all again.

  • paffuto10
    paffuto10 Member Posts: 388 Pioneering
    @lisaann76

    I really don't know how you're managing, you deserve a medal. Seriously! 

    I hope some of those links from Chloe will be useful. 

    Do you have family or friends to help out at all? 
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    @lisaann76, it sounds like you are doing an incredible job considering your circumstances. I would certainly look at the Navigate service that I have linked above as the skills you would learn can be transferred to all of your children, not just your daughter. 

    I really hope that you don't have to wait much longer for the social referral and that they'll be able to provide more support, please do let us know.

    Scope

  • lisaann76
    lisaann76 Member Posts: 13 Connected
    I dont have friends or family .
    My dad pasted away of cancer 4 years old 
    And my mum has dementia and in a care home. 
    My partner is all I have
  • Chloe_Scope
    Chloe_Scope Scope Posts: 10,557 Disability Gamechanger
    edited November 2019
    I'm really sorry to hear this @lisaann76! I'm glad your partner is there to offer support, but it cannot be easy.
    Scope

  • paffuto10
    paffuto10 Member Posts: 388 Pioneering
    @lisaann76

    Very sorry to hear about your parents lisa.
    And friends in real life are hard to make/keep when you have your hands full aren't they?
    It can be very isolating. 

    I'm the same but hubby is my best friend (and my carer)  :)

    You will make friends on here though so do try to keep us all posted if you can manage it. 

    Take care and I look forward to seeing you around the community. x
  • lisaann76
    lisaann76 Member Posts: 13 Connected
    We have thought about my partner becoming my carer,but. We are unsure if we could cope on less money.
  • paffuto10
    paffuto10 Member Posts: 388 Pioneering
    Well your partner would get Carers Allowance and I think ESA or UC, but probably not as much as working if he's on good income. 

    We still get Income Support (haven't been changed to UC yet) and PIP for myself and Carers Allowance for hubby. 

    Struggle but do manage. 

  • lisaann76
    lisaann76 Member Posts: 13 Connected
    We changed to uc,when he moved in with me but to be honest I get less money for us than tax credits. 
    Was a drop of about 900 a month, not sure how much of u get if he dodnt work
  • paffuto10
    paffuto10 Member Posts: 388 Pioneering
    Goodness, a drop of 900 is a lot! 

    I will just put @poppy123456 name on and she might be able to come and advise you. 

    I don't know much about benefits, only how to fight tooth and nail to get them!!  :D
  • paffuto10
    paffuto10 Member Posts: 388 Pioneering
    Oh I see poppy didn't come on @lisaann76.

    I'm hopeless at tec stuff, I just thought if I put her name she would magically appear  :D 
    My daughter will laugh her socks off she sees this!! 

    Anyway, have a look around the site Lisa and you will find benefits advice, I'm sure. 

    Hope the Social get back to you soon, maybe phone to remind them that you are really struggling at the moment? 
  • lisaann76
    lisaann76 Member Posts: 13 Connected
    I have phoned them so many times,I'm ment to be on the urgent list. 

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