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Lucy, as many of you know has cerebral palsy, she is severly affected both mentaly and physicaly.
Cerebral palsy happens as a result of brain truama and/or oxygen shortage to the brain. It affects children in many ways with symtoms ranging from slight visual problems or muscle weakness to no control of the body, blindness, deafness. Most children have different degrees of muscle tone, from loose (making them very floppy) or tight (making arms and legs look twisted and rigid.)
Some children may be very physicaly affected but be very much normal mentaly, (think Steven Hawkin) he has very little control of his body yet has one of the most brilliant minds in the world.
In Lucy's case she has very little motor control and delayed development.
When Lucy was diagnosed of course it is a huge shock to learn that your baby may never be like normal children but as she was our first child we were not as concerned as some people may have been. She is all we'd ever known, she was normal to us.
I think we got over her diagnosis quickly because of the sheer amount of support offered from our physio's, OT's and doctors not to mention internet sites that cater for parents of disabled children. The Baby Center was one of my haunts, it has a forum for parents that want to talk or get advice. Well worth a visit if you are looking for a site to chin wag.
Lucy sees her physio and Ot and her home visiting teacher once every two weeks and its always great fun. She is a very simple child so she is easy to work out in terms of if she's happy, if she's sad. This toy makes her happy, this one doesnt. She doesnt play 'mind games' with you like some little mosnters might.
Her newest favourite toy is one her speech theripst brought round this week. It is a large red button about the size of a tea plate that she can press. Once it is pressed it playes a message that you can record on to it. It gives her some sort of control for example: I record "Give me my beads" and i will then give her her coloured beads to play with when she presses it. This helps her learn cause and affect. She presses button, hear's the simple sentence and then gets beads or another toy. Of course this recorder can be abused. If Lucy should press it this second it will say. "I think daddy should make mommy a cup of tea" hee hee.
Another problem with Lucy is her night time sleeping pattern or lack of one. She cries every night for no reason and this is a real problem. Some children with C.P struggle to work out day from night and as a result dont sleep well. She will shortly be getting some medication to help her sleep through the night. Hurray!!!
I now suffer from insomnia and have been perscribed Tamarzepan to try and help get me sleeping again. Because i am up and down all night i find it really difficult to shut down my mind when i want to fall asleep.(Thats why some of you may notice my ratings at strange times in the morning.)
So anyway some advice to parents of disabled children:
Firstly dont worry about the things your child CANT do and concentrate of things she CAN do. I got this advice from a much loved physio and it did wonders. It opened a whole new door for us and helped us see Lucy in a different light. She cant walk, talk or sit herself but she can laugh. It's hard to get her relaxed and happy enough to laugh and it may only happen every couple of weeks but when she laughs it makes us all want to cry because it sounds so amazing. When she gets started it's hard to stop her and she will giggle away for ages. But she soon forgets how to do it after she stops and it takes ages for her to learn again.
Get in contact with other parents with disabled children, it's not hard. Say to your physio that you wouldnt mind if she passed on your phone number to some other people she sees. You will probably find that most other parents are grateful for it.
Enjoy every minute of your time, Lucy also suffers from microcephaly (meaning her brain and head dont grow very well) so her life expectancy is very much shortened.
Swimming, this is brilliant for C.P sufferers, it gives the child a huge amount of freedom with their bodies and help relax tight toned muscles. After Lucy has been swimming she is all loose and has much more control of her left side because she feels more relaxed.
Go to as many support groups as you can. Your doctor will be able to tell you what you have on offer in your area. Some may only meet up once a month but its great fun to have a couple of cups of tea and a gossip.
Dont feel upset if you see other children your child's age doing things your child may not be able to do. I suffered a lot with this when my freind had a baby a few months after Lucy. He was sitting up and drinking out his bottle and playing with toys. I used to feel terrible because i knew Lucy would never do anything like that. There is no easy solution not to feel bad apart from see your child as an individual who has just as much love to give than any normal child.
If you have another child get them involved. Jasmine is 7 months old now and we try to involve her with Lucy's disability. I show Jasmine Lucy's toys and let her play in our games. I also do some of the physio stretches on Jasmine after Lucy's done hers. Not for any reason but to not let Jasmine feel left out. I only do them gently and not really enough to have any benifit but it means they both get the same treatment regardless of Lucy's C.P. I would hate to think that Jasmine might be angry at Lucy because of the attention she gets.
Never blame yourslf!!!!!!! This is so important. Remember that these things happen and there is nothing you can do about it.
Dont feel sorry for your baby. Of course it's awful to say that but in Lucy's case she doent know any better. She is how she is and that's all she knows. She's happy and very loved which in my book is all that matters!
I really hope there is some helpful advice for someone who might be facing a problem like this. Please do get in contact if you are.
Cerebral Palsy is a term used to describe a group of chronic disorders impairing control of movement that appear in the first few years of life. The term cerebral refers to the brain's two or hemispheres and palsy describes any disorder that impairs contr