Disabled Parents - Doing things differently, but the love is the same!

mossycow

Hi there, hope its OK to post in this topic area. I realise it is mainly for those (amazing!!!) parents caring and loving children who may identify as being disabled, but I would appreciate support as a disabled parent and would enjoy hearing how you parent in ways possibly different from our more able bodied peers.

mossycow

For example, something I hate as a Mum to a snuggly, loving 9 year old daughter is that I hate to be touched. When I am touched from the waist up its like being struck by lightening. It makes me feel kind of disgusting and obviously this does not marry with cuddles easily.

When my daughter was a baby I breast fed with help from my lovely midwife who then became a friend. She suggested long sleeve tops, lots of banana shaped cushions ( as I also have chronic pain and weakness in my arms and now in my neck and back). I found that if touch was firmer it is easier so we learnt to latch on quick. I wore clothes with just a gap for feeding and we coped for 18 months. 

Emily is 9 now. And she has grown up surrounded in love and affection...but perhaps in different ways. She cuddles her Dad on the sofa, he lifts her up, she runs to hug him when he is home from work.   For me, we say I love you lots, and we have hand hugs. I need to know when touch is coming and it needs to be firm not soft otherwise the lightening strikes but it works for us.

When I touch her like stroking her face, kiss her cheek its a bit easier. But I cant really cope with being near her gorgeous, long hair...... so she ties it back. 

Tonight I was playing the piano while she was on the laptop. She had just finished eating some veggie curry I made just how she likes. We were having a fab Friday night. It was time for her to go to bed... and she said "You've already hugged me by making my tea and us singing daft songs together". I thouht yeah... I may be a bit odd in the hugs department but I have other skills to nurture and surround my child in love.

mossycow

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Chris_Scope

Hi @mossycow, just a quick note to let you know I've moved your post into our new 'Disabled parents' discussion category, which we hope will be useful to people.

mossycow

Yanks,  would love to hear from others who consider themselves disabled and are caring for children. 

Sam_Scope

What a lovely post @mossycow - I have three kids and I worry that my illness will have a negative effect on them, they have seen me go through a lot and spend a lot of time in hospital and at times they have cared for me.  I think being open and honest is key, I explain things to my kids and let them know that they are always free to talk to me about it.  I tell them that they cant offend me and that I want to hear their thoughts and worries, but if they cant speak to me, they should speak to their dad or aunty or another adult we all trust.

When I first had ostomy surgery, my daughter didnt want to hug me, she was scared of hurting me and my stoma was scary to her.  But by talking about it and telling her that her feelings were valid and it was all ok, she got used to it and knew that she wasnt being 'naughty' or 'rude' but learning to deal with a new situation in her own way.

Kathy_Bramley

Hello. My little boy is obsessed with cows, but that's an entirely other thing!
I can empathise in a lot of ways. My sensory sensitivity does get in the way of parenting, although I feel like they're mild, lucky to be able hug them, it changes so that must be confusing. Especially considering they have additional needs themselves. 
I joined to be part of the disabled parents group. Though I also feel unsure about how I fit into disability. Whether I really deserve to because my diagnosis is unclear. And also it's a little complex but not so unusual in that my children have similar but different difficulty. In some ways my sensory sensitivity is not as bad or as sharp, but I tend to build up towards getting totally overwhelmed and more so during PMT. I feel bad because of it, I tend to bristle like lightening, but it doesn't necessarily feel like it.  And they can both be quite physically challenging in different ways. And my daughter wants painted nails, and I struggle with even cutting them, never mind the skill and smell tolerance to paint. I'm not very girly either. 

There's so much potentially to talk about I am finding it hard to be selective. 

mossycow

Yes I know what you mean.  The whole 'disabled'  label is a funny thing and it doesnt feel straight forward. 

I agree the change is hard.  It's interesting to wonder how our children are adapting and even inspired by our own personalities and challenges.  

My daughter is really independent and very vocal. When guiding her and making sure she is safe I've always been mainly vocal as picking her up etc is hard.  She was an early walker and I wonder if that's because I couldn't carry her round...  She's good at listening which has been  a life saver like when crossing road in wheelchair.  

I wonder if your daughter isn't bothered about nail varnish because it's not been an important thing for you both.  I got a bit worried that our daughter wouldn't be into physical things but now she is at school and we've tried to expose her to stuff I can't do she is enjoying swimming and horse riding so obviously she isn't limited by my limitations. 

Bit rambling,  sorry  bit poorly today.  We are having a bed morning ☺.  Out later today hopefully