Viewing 7 posts - 1 through 7 (of 7 total)
  • #156002
    New Mum needing help

    Hi
    I’m a new Mum with a 7month old baby and struggling with all the physical parts of looking after him lifting carrying, changing etc.
    I’m heavily reliant on my family now 24hours a day and can’t get out the house alone.

    I need a home help/PA/Au pair I’m not really sure what I’m looking for or how to get it does anyone have any advice??

    I’m in contact with an OT and social work but it’s all very confusing as the help is for me to look after my baby rather than me direct.

    Has anyone got a PA to look after their child and can help me?

    Lynseypirie
    Participant
    Posts: 0
    Joined: 23/04/2018
    #156010
    Reply To: New Mum needing help

    Hello and welcome. A difficult time for you I have no doubt. I am sure that someone will be along with some advice soon. Could I ask if you have claimed PIP/DLA successfully/ you also did not specify which type of MD you had. Whilst it may not make much difference to the answer to your question it will help us understand the difficulties you face and what other things we can suggest would help.

    Mike

    So many love songs, so little love.

    embayweather embayweather
    Moderator
    Posts: 8
    Joined: 02/11/2015
    #156034
    Reply To: New Mum needing help

    Hello Mike

    I have LGMD 2B and yes have successfully claimed PIP.

    Hopefully I can find other people who have a PA to find out what sort of help they get.

    Thanks
    Lynsey

    Lynseypirie
    Participant
    Posts: 0
    Joined: 23/04/2018
    #156045
    Reply To: New Mum needing help

    The best place to start is Adult Social Care with your county council. I employ PAs and that is usually the first point of contact. I am certain I have read about parents who have employed PAs to help them with caring for their children before.

    Let us know how things go. Hopefully, some other parents with MD will chime in with their experiences.

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #156067
    Reply To: New Mum needing help

    Hi there,
    Sarah tracked me down on FB to come help. Thanks again Sarah!

    My name is Fi, I’m 29 and I have two little girls, 5 and 2 years old.

    During my first pregnancy in 2012 I asked my Social Worker for something called Direct Payments and how I’d need to use the allocated hours for both my own care needs and to physically assist with some aspects of parenting.

    This baffled my SW who wasn’t involved with any other disabled parents. After a lot of Internet research I found something that said DP can be used for supporting with the disabled adults children as well. It was termed as ‘Supportive Parenting'(remember this term to use when you talk to your SW!). Believe me there was ALOT of faffing around on their part. Adult social services thought it was childrens services responsibility to fund it, then childrens said only if they flagged if up and put my eldest on the ‘at risk’ register which scared the cr** at out of :cry:. But in the end after printing out some info from the Disabled Parents Network and sections on Direct Payments ‘what you can use your money on’ they finally sided with me that it IS indeed upto Adult Social Services. Reason being its to support me in parenting due to MY disability, not that my child has extra needs.

    So first think about how much support you think you need per day, what times are hardest and you want more time away from depending on family. They’ll ask you so you want to be confident in your needs. I.e it’d be helpful to have support first thing in the morning, every few hours or perhaps morning and evening, you may choose family during the day. It’s totally up to you but think it through first. You’ll have to be a good self advocate.

    Once you’ve got a ‘support plan’ in mind how to cover your needs with baby call your local Adult Social Care line and ask for Disability team/division. Tell them you are a young Mum with Muscular Dystrophy with a 7month old. You’d like to set up an at home assessment for Direct Payments. They’ll get back to you once they’ve allocated you a SW and to set a date.

    I’ve also got some helpful links for you.

    My blog ‘Life of an Ambitious Turtle’ follows my journey parenting with MD, Personal Assistants amongst other things. I’ve linked specifically to a post I wrote on being a disabled Mum and needing PA support as I thought you might find it comforting as we probably share similar feelings!

    http://www.lifeofanambitiousturtle.co.uk/2017/10/letting-go-of-what-i-can-do.html?m=1 (feel free to contact me using contact section on my blog too)

    Direct Payments Guide Book

    https://www.google.co.uk/url?sa=t&source=web&rct=j&url=http://www.northerntrust.hscni.net/pdf/Direct_Paymnents_User_Guide.pdf&ved=2ahUKEwjmuJGk99PaAhViK8AKHdyEANEQFjAAegQICRAB&usg=AOvVaw0GV3rL4-37WSD9eTOcgnUn

    Best Beginnings – A UK based Disabled Parents Network

    https://www.bestbeginnings.org.uk/parents-with-disabilities

    I hope some of this info is helpful and as I said feel free to get in touch for further support or information

    – Fi

    ambitiousturtle24
    Participant
    Posts: 69
    Joined: 18/03/2011
    #156085
    Reply To: New Mum needing help

    :ty:

    A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adams

    sar78 sar78
    Moderator
    Posts: 2,246
    Joined: 05/03/2015
    #156108
    Reply To: New Mum needing help

    :ty: great info

    xx

    """""""What doesn't kill you makes you stronger""""""

    Cat (Mod) Cat (Mod)
    Moderator
    Posts: 1,002
    Joined: 20/09/2010
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