Parents, carers and disabled parents
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Grandparents of disabled children

Dear All
Lòoking for some advice please. Have a lovely 3 year old grandson and waiting for diagnosis. Signs are that he has CP but other possibilities still being tested. I do some caring for grandchildren and get on well with son and daughter in law but find it really difficult to find out what's going on . Finding it really stressful as they don't want to talk about it and there's no one I can ask about it. I love them all very much but want to do best for the little one. Would be grateful to hear how you have coped in this situation. 

Replies

  • fishingmumfishingmum Member Posts: 562 Pioneering
    hi Elaine, a lot of parents struggle at first coming to terms with knowing their child has a problem, it could be they are waiting for diagnosis to come in before they then talk about it, knowing then what they have to deal with going forward. I understand you find it stressful, but as a parent I was struggling to come to terms with my sons diagnosis and it was when it was finaly done I was then able to ask for support in the areas I knew I needed help.
    Maybe ask your son and daughter in law what you could do to help, and ask them the best place they found for information as it can show you are being supportive without them maybe seeing it as interference or trying to take over. Your emotions really go into hyperdrive when you are going through this and can take the slightest good gesture as some kind of disapproval although later you realise it wasn't, it is a hard time and hope it works out for you.
    life is too short to let others make you miserable.
  • Elaine17Elaine17 Member Posts: 6 Listener
    Thanks very much for sharing this. It’s a hard time, but you’re right I have to try and step back. I suppose it’s because the early years are so important in helping with speech and mobility. 
  • fishingmumfishingmum Member Posts: 562 Pioneering
    It is very important, I am sure they are grateful for you being there, but right now their minds are not considering anyone else but their child. It also means the slightest thing said can and will be taken the wrong way. They do not mean that, and once everything has settled and they know what they are doing and how to move forward things will change. Space and understanding are a huge key here, but if you offer support, and ask how you can help it will make a difference.

    Also blowing bubbles is a fun thing for grandparents to do with their grandchild, and helps with mouth movement, so little things like that, that does not look like you are interfering and looks like regular fun is always fine :)
    life is too short to let others make you miserable.
  • Elaine17Elaine17 Member Posts: 6 Listener
    Really good advice. Thank you! He loves bubbles and it’s nice to have fun with him! 
  • fishingmumfishingmum Member Posts: 562 Pioneering
    my friends daughter has problems with her mouth and one of the things they do to help with mouth movements happen to be blowing bubbles, so we helped make games up for her to make sounds that were difficult for her to normally pronounce. We played games like beds, hopscotch etc, but instead of numbers it was animal names and then used them for word games so s snake might be number 1, we then used the snake going to the shops how would ti get there, by slithering, how would it carry shopping on a skateboard. Find things like that to make up you can obviously use it age accordingly and ability accordingly, so if they can not jump around for hopscotch, make a board game so it would then be a dice. These things can be fun, as a grandparent you get to have more of the fun aspect, which is great for bonding as well and kids with disabilities can often feel left behind, any relationship that is healthy and fun makes a huge difference.
    life is too short to let others make you miserable.
  • Elaine17Elaine17 Member Posts: 6 Listener
    What great ideas! Will definitely try them out. Sounds like really good fun! Thank you.
  • sparklessparkles Member Posts: 11 Courageous
    Hello, as a parent of a disabled child (mum) my now 10 yr old son has CP and is in a wheelchair, he was diagnosed around that age, I didn't really have a problem coming to terms with it in that regard as I saw my cute, funny bubbly son laughing and always smiling, I let him lead me! And now he's a right cheeky little young man! Lol... he has his difficulties, totally dependant on us as he can't walk, or talk but he does express himself different ways. My son loves his music, he dances in his own way, children are very sensitive to things especially if visual impairment which my son has, but he really does love his music! Maybe give it a try, just be there for your son and daughter in law and just have fun and giggles with your grandchild in the normal way, this might help them come to terms that it's not always doom and gloom, yes there are times when I have tears down my cheek cause I wish my son could talk to me, but then I realise he is talking to me but in his own way, usually back chatting! Lol sticks his tongue out if he doesn't like something, pulls mine and his dad's hair cause he wants to play fight etc.. he's my world! If there's anything you want to ask on here as we are further up the road than you are, then please feel free to ask, I honestly don't mind . My parents have their own way with my son, dad not so sure what to do half the time, but mum plenty of cuddles and playing with toys, oh and iPad! Haha
  • Elaine17Elaine17 Member Posts: 6 Listener
    Thanks very much for this. It’s lovely to read about the love and fun.  I am already learning so much from being on this site and the message I’m getting is to really enjoy the children for who they are. I do have great fun with my grandson, but I think the problem is with me in that I worry I should be doing more to support. Maybe I just need to relax and smile!
  • fishingmumfishingmum Member Posts: 562 Pioneering
    @Elaine17 that is the key, fun and shower with love key ingredients to being the best grandparent you can be xx
    life is too short to let others make you miserable.
  • Elaine17Elaine17 Member Posts: 6 Listener
    Will do my best!
  • SkiggleSkiggle Member Posts: 3 Listener
    Hello Elaine17. I am a mum of a teenage son who has cerebral palsy, and so while not may be a grandparent, I have come across a support group on Facebook/Internet called Special Needs United Grandparents (SNUG). They have been incredibly supportive for me professionally as founder of Skiggle.co.uk and think they might be a group you might benefit from personally. Good luck Skiggle x
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