I've been looking for a way to share my knowledge and experience and now I have my chance. I don't have any children with CP, but I do have it myself. I'm not an authority on the subject by any means but if anyone has any questions from school and friends, to driving and relationships I'm willing to share it with you. My goal is to give even one person hope and understanding, because I have been where some of your children and yourselves are headed. I know from my mother's stories that it can be difficult and scary to be suddenly facing life with a child with CP. And remember, there's no such thing as a stupid question.

I know i've already asked you lots but i've got a few question if thats ok?

If Ellie falls asleep on her right side (her good side) she wakes up screaming, we think its because she then gets pins and needles and can't really move because of the weekness in her left side, does this happen to you? obviously we're not able to ask her yet coz she's only 20 months but she just freaks out so much we could do with someones opinion on it.

and my other question is, and i hope i don't upset you by asking this, but what does it feel like to have CP? does your affected side feel different to your other side, can you feel a difference or is it just the physical movements that feel different? can you feel like your making more effort when your using your affected side?

I hope you dont mind me asking these questions, I just feel like i need to know what my little ones feeling so i can help her

To your first question, all I can say is I can't sleep on my right side (good side) because it is uncomfortable and painful. If I don't fall asleep on my stomach I usually sleep on my left side. I don't know why and I can't really remember having a preference when I was younger. I definitely couldn't give you a medical reason but it could be due to the muscles being used more during the day and they don't want to be laid on. I had the pins and needles feeling off and on, but it seems to have tapered off as I've gotten older. I used to have leg spasms and they would sometimes cause a 'charley horse,' cramp in my leg and I would wake up screaming. But it wasn't very often. I don't know if that helps or not.

The thing with my CP is that it very mild in comparison to many other people I've met. I really don't think about it or even notice it unless I try to do something, like typing, that can be a challenge. There's not really any sensation that goes wit it that I've ever noticed, but there is something. I can't wiggle the toes on my left foot at all. I can kind of move them a little but it only impresses me. (and the toes on my right foot always try to move along with them) When I attempt to move them... it's hard to explain, but it's like I can tell my brain isn't getting the signal to wiggle them. I can sense where they are and the what I need to do but it just doesn't happen. Or that my brain's reaction time is slowed down for my let side. My hand isn't like that thank goodness, but fine finger movements are difficult. Not impossible, but difficult. I can type faster than my husband, but I'm no expert. I'll never be able to type without looking, but I can get pretty close.

When I try to lift something heavy, I tend to use my right arm to lift and do the hard work and the left just acts as a stabilizer. 9 times out of 10 if I don't absolutely need to use my let arm i won't. It's very weak no matter what I do and my grip is terrible. I tend to get angry with my arm and hand more often than my leg. For the most part, my leg does what it should. I do tend to drag my left foot and I don't walk heel-toe unless I concentrate. I have to buy shoes more often since I wear the toe of the left shoe out fairly quickly and I'm sure the foot dragging causes most of my falling. That and a terrible sense of balance.

Your difficulties sound very much like Ellie's, and everything you have said has been along the lines that we have been thinking its like for her, but to hear what you do and how you deal with it is so reassuring for us.

Thank you so much for taking the time to reply and helping us to help ellie, she's such a little star that wewant to give her as much help and support as possible so understanding her problems is essential.

Thank you again

I'm only too happy to help in any way. I wouldn't worry too much. The only real problems I've had, have been joint pain later on in life. We all end up dealing with that sooner or later. It just came sooner for me. Rest assured your daughter will be fine. She can play and learn (barring any mental impairment that can occasionally coincide with CP) and make lasting friendships like anyone else. Just try to help her to be herself and not her disability. That could be even more debilitating than severe CP.