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 hughesc,
I'm new to this forum too. I have a son who is 4 who has a diagnosis of diplegic CP. I fluctuate between trying to force him to do things that don't come easily to him (walking long distances, learning to ride a bike), and then deciding that I should actually just let him be a happy child. It's really hard to strike a balance, and I feel like every day is different with regards to trips/falls, how quickly he can walk etc.
I am sure you're doing the best you can possibly do for your daughter, even if it doesn't feel like it. The most important thing you can do is to concentrate on her strengths, on the positives. If you find an activity that she likes to do, then perhaps she'll start to make friends with common interests. Personally, I think explanations of her condition aren't necessary yet - she is young and will work out for herself what is within her capabilities. Everybody is different!
Good luck :)
Hi Hughesc
My son is 3 and a half and has PVL which led to spastic diplegia and sensory processing disorder. He falls over all the time, is developmentally delayed and has speech delay & disorder. Worst of all he has failure to thrive and getting him to eat is a constant battle. He would survive on 300 calories a day if left to his own devices and he is tiny and not growing or gaining weight. We have had numerous tests and he is on high calorie milk (Neocate as he is dairy free). Before going dairy free he vomited all the time for 18 months. The not eating is often the thing that can almost push me over the edge. Food is nurturing and as a mother we want to give our children good food that they enjoy. It's so hard when you can't do that. I do make sure he gets a liquid multivitamin and good quality fish oils daily though. Are you getting any NHS support with her feeding?
How do I cope? Some days I only just make it through but mainly I surround myself with a strong support network. Not everyone understands what we go through and the best thing I have done is join a local CP parent support group which runs once a month. It's amazing how many of the same problems we face and to be able to talk about it with people who really know what you are going through is a life saver. It also means my son can meet children like him, so he can play and not feel different. I have a disability and I never knew anyone like me as a child which was hard so I don't want that for him.
As for explaining that's a tough one. We're not there yet, although I think my son senses he is different. You know your daughter best so trust your instincts about what/how to talk to her about her CP.
Remember you are a great mum x
Hi my rising 7yr old son has pvl cp spastic deplegia and hypotonic muscles in hands arms feet wrists and ankles
I could write all day about what we have been through ups downs its been a rollercoaster
Im lucky he eats well although doesnt store iron so had severe fatigue
At a recent multiagency meeting at school im adviced that his sudden low, asking questions , realising hes different is normal in cp children at his age
This was a relief as he has always been a fighter always amazes us joins in and tries everything
He loves to dance and recently has been opting out of activities thinks he cant do them or keep up
I am adviced this will last 6 months and im praying its right
He has changed dramtically which has been so distressing for us as a family
He has emotional breakdowns all the time and can sob for hours I put this down to frustration he has started to realise hes different and its been a hard few weeks
Sarah xx
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