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Disabled Parents

Rhi87Rhi87 Member Posts: 3 Listener
in Parents, carers and disabled parents
I am a disabled parent with 3 sons two of them are also disabled. I wanted to be able to talk to disabled parents about the things we struggle with. I dont know and parents who are disabled and all of my friends are able. I have a veru good husbnad who cares for me and my children but would be good to be able to talk and get advice from others in my position.

I dont know how to explain to my children about disability in a way they can understand and i want to be the best parent i can be for them despite my mobility and other limitations. My sons are 9, 8 and 5.
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Replies

  • CHEEKYMONKEY2007CHEEKYMONKEY2007 Member Posts: 2
    I have a disabled 8 year old little boy. He has epilepsy, chrosome imbalance, sensory disorder, speech and language delay and global developmental delay
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  • ixyixy Member Posts: 4
    hi, I'm a disabled parent, my daughter and husband are not disabled.
    There are a fair number of people in our extended families with chronic illnesses and disabilities.
    My little girl is 18m and loves my powered wheelchair, she thinks riding on my lap is the best thing ever. I do wonder about explaining my illness and disability to her later on though.
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  • Rhi87Rhi87 Member Posts: 3 Listener
    I think because I may have passed my condition in to my children I am worried about how to explain it. I have never had the opportunity to talk to other disabled parents to know if he things I worry about are common.
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  • Claire BallantyneClaire Ballantyne Member Posts: 1
    I'm a disabled mum I have lupus and fibromyalgia I have 2 boys my oldest is disabled he was born prem at 26week and has learning problems. My youngest is nearly 4 ..its a struggle there so active and I'm not I use crutches or a wheel chair I'm waiting for a stairs lift to be fitted and I'm only 34.so I know were you're coming from like you my husband is a blessing. But there are things that only a mother can do and on bad days its very tough not to sit and just cry .but I have to stay strong and hold it back for my children sake .I'm more than happy to email Rhi87 or write letters I don't get out so I don't have any friends
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  • paininthemumpaininthemum Member Posts: 1
    Hi. I'm 32, living with chronic illness and 3 kids. It's such a tricky situation to be in and so lonely at times. I've started a blog about my experiences and challenges. Please take a look and feel free to contact me if anyone wants a chat. :) 
    www.paininthemum.wordpress.com 

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  • LoveFelixLoveFelix Member Posts: 3 Listener
    edited April 2016
    I am a 48 year old mother with athetoid CP. I have two non-disabled teenagers aged 18 and 15, and have always found honesty the best policy when discussing my disability. I have been genuinely surprised at how accepting the majority of their friends are but will always try to put them at their ease, especially on a first visit. Humour always helps and, even very young children, will understand the concept of impairment if it's explained in the right way. Unfortunately, this acceptance is not always seen in adults-teachers at Parent Teacher Meetings being a case in point!
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  • Richard_ScopeRichard_Scope Scope community team Posts: 2,702 Scope community team
    I'm a disabled dad, my daughter is 7 years old. I have always been honest with her since she has been old enough to process the information. 
    Scope
    Specialist Information Officer - Cerebral Palsy

    Want to tell us about your experience on the community? Talk to our chatbot and let us know. 
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  • NicolaJNicolaJ Member Posts: 1

    Research on disabled parenting and PA support

    Hi,

    Are you a disabled parent?  Do you have a personal assistant?  I am doing some research into how personal assistance affects relationships between disabled parents and their children as part of my PhD studies at the University of East Anglia.  This is an under-researched area, but it is very important as more disabled parents are using personal budgets/direct payments in this way.  I am currently seeking participants based in the Essex/Suffolk/Norwich area to interview as part of this project and would love to hear from people with direct experience. 

    If you would like to find out more, or tell me what you think is important to learn about this subject, please contact me direct by email:

    [email protected]

    and I will be more than happy to send you further details.  Confidentiality and anonymity is ensured.

    Thanks for any interest!

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  • sallyanna169sallyanna169 Member Posts: 4 Listener
    Claire Ballantyne said:
    I'm a disabled mum I have lupus and fibromyalgia I have 2 boys my oldest is disabled he was born prem at 26week and has learning problems. My youngest is nearly 4 ..its a struggle there so active and I'm not I use crutches or a wheel chair I'm waiting for a stairs lift to be fitted and I'm only 34.so I know were you're coming from like you my husband is a blessing. But there are things that only a mother can do and on bad days its very tough not to sit and just cry .but I have to stay strong and hold it back for my children sake .I'm more than happy to email Rhi87 or write letters I don't get out so I don't have any friends
    Hi Clair i like you suffer with fybromyalgia and i have worn and popping out disks and chronic pain i no how you feel as iv got a 3 yr old little girl she is a ray of sunshine and if nothing else makes me smile she will i often cry as I'm gutted so much i can't do with her simple things like taking out on her bike and this week she has her first nursery outing i am so upset about this i struggle with my walking and now my feet legs so swollen making my life that bit harder I'm single i don't go out and no friends a very lonely life and if i get a responce from you then yr l be the 1st person iv communicated with 
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  • Rhi87Rhi87 Member Posts: 3 Listener
    I think being honest is best but it's hard to explain in a way that they can understand. I have a very busy life as I'm trying to squeeze as much in before my mobility decreases.  It can be very lonely being in pain all the time and I feel quite depressed about it lately. 
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  • Jane_ScopeJane_Scope Member Posts: 10 Listener

    Hi

    In case you aren't aware, there is an organisation for disabled parents  DPPI Disability, Pregnancy and Parenthood http://disabledparent.org.uk/  You can "ask the community" and "share experiences" amongst other things so that you feel a little less isolated.

    Claire and Sallyanna - I assume you may already know of the fibromyalgia organisation UK?...if not: hhttp://fmauk.org/  they have a helpline and dedicated benefits line  National Helpline 0844 887 2444 (10am - 4pm Mon - Fri)
    Benefits Helpline 0844 887 2450 (10am - 12pm Mon, Wed, and Fri)

    best wishes :-)

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  • sallyanna169sallyanna169 Member Posts: 4 Listener
    Thank you very much Janeywoo i didnt no that information 
        best wishes to you also ;-)
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  • Claire83Claire83 Member Posts: 4 Listener
    Hi I am a disabled mum of 2 young people  1 is 7 and 1 is 5. I had a very sudden brain hemorrhage a few years ago- I literally went to bed fine and woke up disabled in hospital. I need any tips now!
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