Coping as a parent,- diplegic cerebral palsy - help and support please..
Hi
I'm new to this forum, but would really like to know how other parents cope with dealing with the day to day worry, concern, heartache when your child has cerebral palsy, and the effect it has on the whole family.
My beautiful daughter is 7 and has diplegic cerebral palsy, she is effected by the following:
Trips/falls, failure to walk long distance without pain, pain as an after-effect of exercise, poor concentration and emotional understanding, disturbed sleep, swallow difficulty leading to constant choking, asthma, dribbling, poor speech, and now awaiting result of video scan (can't pronounce the word sorry) to diagnose problem with pallet which may require surgery. She also has a pineal cyst which has to be monitored every 18 months to check for growth, which is an added concern.
She is amazing, but is not eating at all it feels like at the moment, her diet has always been difficult to manage but of late I am in total despair, I don't know how to get her to eat a meal and feel that everything is getting worse with her.
I just want to help but as a busy working mother of two feel that I am failing and most importantly letting my daughter down as I don't feel I have the time or the energy to be doing as much as I should for her. I want to do so much more. But I also feel I am letting her older sister down as she takes the brunt of it at home and bears a lot of the responsibility in looking out for her sister - and I don't feel this is fair, but don't know what else to do.
Because of her age and the difficulties she faces I am also concerned because I can see she wants friends but is often alone in school and no-one wants to play with her, her little face falls when she realises the other children don't want to play - and I hate to see that she is starting to realise she is different.
How can I help, should I explain about her condition? But because her understanding is so poor I just worry it may make it worse for her as she may get distressed or more confused?!?
Thanks for listening :)
x
Hi
My little boy is only 21 months old and has quad spastic CP. I have no experience yet of all the things you list as being worries for you regarding school but am already thinking ahead to those times and worrying. As mums we want to make things better for our children and with a child with cp it's even harder to do that than it is with a non-disabled child. I just know that as a loving mum you'll find a way of helping her though - trust your instincts. You know her best of all.
Can a speech and language specialist with eating and drinking experience help you with the food thing? Or a dietician? I know getting enough food in is a big worry, especially as our kids use such a lot of energy.
I can totally understand your concerns about the responsibility you feel you place on your older daughter and the fact that you feel that you would love to do more for you little one if time allowed this to be possible. I am a mum of twins - one with cp and one without and a four year old little girl. I know that I expect more of my 4 year old than most would expect of a child the same age. If I wasn't stretched to capacity like I am, I could be much more understanding of her huge outbursts of frustration - I know it's normal for a four year old to end up in tears because they can't get their socks on or don't want to wear the knickers you have chosen - but I just don't have time to deal with it properly. I just seem to shout at her - hurry her along, tell her to stop being silly, or just try to make light of things. I just don't have the time to indulge her when she sometimes clearly just needs me to say 'I know how frustrated you are and that you need some more of my attention'. But havig said that, she is clearly a happy little girl, she loves her little brother and sister and she confides in me when she is feeling sad - for all my worry, I really don't think that she is feeling let down by us. I think she is coping marvelously. Maybe we just need to let go of the worry and guilt a bit - mums can be very hard on themselves.
I will be thinking of you - good luck hon
Maria x