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Feel bad - being a disabled parent

cher77 Member Posts: 95 Courageous
Hi all I'm disabled stuck upstairs as it's most comfortable anyway been disabled for the past 7 years my husband is my carer who is fantastic dealing with my disability and mood swings anyway i feel bad for the kids as I'm not active anymore and they help out especially with my son who's 15 he is great at helping out but I feel awful about it as he tends to want to stay in with me looking after me like making me brews changing my bedding ect i don't ask him he's just like that but I fear he's not enjoying being a kid it's get me down at times and i don't like the kids seeing me in pain any advice or as anyone else in the same situation thanks for reading x 


  • Sam_Alumni
    Sam_Alumni Scope alumni Posts: 7,676 Disability Gamechanger
    Hi @cher77
    Have you had a look to see if there is a Young Carers group in your area? 

    I know it is hard when you have kids, my children have seen me go through a lot in the past few years and I worry about how it affects them.  I think having an open and honest relationship with them really helps.

    I met with the Sheffield Young Carers group this year and they said the one thing that often comes up with the young people they work with is that no one asks them how they are feeling.  It is important that kids have a safe space to be able to talk about their feelings.  My kids feel guilty saying to be that sometimes they find it hard, but we had a big chat about how valid their feelings are and that it is ok for them to struggle sometimes.

    I also speak to their schoold regularly so they know that there is a disabled parent in the home and so sometimes the kids may be upset, late or have issues.  This takes a bit of pressure off the kids and a lot of schools have young carer policies where they may be able to offer extra support to them.

    I think lots of parents often feel guilty for all manner of reasons, and disabled parents feel that even stronger.  Do you speak to many other disabled parents? There are a few of us on this community and it really can help to just chat about it.

    @mossycow do you have any advice?
    Senior online community officer
  • mossycow
    mossycow Member Posts: 487 Pioneering
    Hi there @cher77 and @Sam_Scope too,

    I think about this so much. Obviously we can't completely know how each other feels and are experiences are unique to a point but.... Gosh that sounds so much like me, and (now I've been here a wee while) like so many others in this community too. 

    My daughter is 10 and when Emily was born I had pain and weakness in my arms and we always did things differently. Like it's always been hard to lift her, hold her when feeding etc. Ha! Ive always suspected this is why she was a super early walker... If she had a supermarket tantrum I sat down next to her rather than picking her up. People might think I'm bonkers but it got the job done. 

    As she got older my neck and now back are problems too. I have periods where I'm either bed or house bound though I'm lucky and can get put a bit.

    But I suppose, just like the early days... It's about getting the job done. The job of bringing up our babies to have happy childhood but also be ready for independence themselves. 

    (sorry, hope I'm not going on too much) 

    So, I think about each aspect rather than comparing our family life to 'the norm'. Over Xmas I was in bed a while. I had a good think. Is my daughter being fed, washed etc her basic needs... Yes. Is she talking with us, having a relationship with me.... Yes, very much so... Possibly more than other do... Is she learning... Yes! She made us baked potato and tuna one day. It took her about an hour.... And she loved it and was proud of herself. 

    It sounds to me, only from the short amount you put  that your 15 year old loves you very much, enjoys your company and is a caring, lovely young man. Not all parents can boast that!!

    Does he have reason to believe you are in any danger? I don't want to ask about your condition but what I mean is, does he need help and reassuring in that respect? My daughter at one point was a little nervous about going out as she worried if I'd be OK. 

    Young carers really help us and I'd thoroughly recommend if you haven't been in touch yet. 

    Have a Google of 'young carers and <where you live>'. Or look at carers UK etc. 

    I was nervous before I got in touch and to keep an already long post shorter, I didn't need to be worried. 

    They have helped Emily express herself, go out and do activities with kids that understand why it's hard to do sleepovers etc. And she has adults she can chat with if needed. Emily can use or not use the service as more or little as she needs and likes. 

    And we have their support too. I've actually met another mum and we chat on Facebook. Meeting in real life is hard and she just gets it, no probs. And our kids like that too. 

    Gosh sorry, didn't mean that to be an essay. It's not, cos I'm just on the journey too. 

    How's your day been? 

  • cher77
    cher77 Member Posts: 95 Courageous
    Hi thanks for your replies I'm in a better mood today haha my son is great in school he's in all top sets so i know it's not effecting his school talk to his teachers regularly they know I'm disabled which help I am going to look into some activists for him in our local area so thanks for sharing and thank you all for replying it makes me feel better that it's not just me and we all get our down days how do i reply to people who reply to me individually 
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Glad to hear things seem brighter today, @cher77! To reply to people, just type an '@' and then their username: this will tag and notify them that you've replied. Hope this helps! 
  • cher77
    cher77 Member Posts: 95 Courageous
    @PippaScope thanks hopefully I've done it right 
  • mossycow
    mossycow Member Posts: 487 Pioneering
    Really glad you've got some support and things a bit brighter. 


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