Discussions that mention botox

Cerebral Palsy board


Just some more stories/experienc - my nephew is 6 and his CP is pretty involved. He's the only kid in his elementary school (grades K-5) in a wheelchair, his speech is affected and he began having seizures a couple of years ago so he has memories of EMT guys at his house and EEGs. And he just had some botox injections.

We've never sat down with him and said "You have CP and this is what it means," and he has a 2 year old sister whose walking and feeding herself so he's obviously aware that he's different, but he's never once asked why or asked us to explain it to him. Once we were at his neighborhood pool where he's the only visibly disabled kid and a girl about his age asked me "Why's he like that?" Nick seemed to ignore her and I wanted to cry, especially because she asked me and not him (his speech is affected and so sometimes kids assume he's not bright). I got myself together and said, "He had an accident when he was born and hurt his brain. So he can't walk and he talks different from you, but otherwise he's a kid just like you."

She said "Oh, ok," made eye contact with him and said "I'm sorry" then smiled and swam away. Later we joined her and the other kids for a game of Marco Polo and she always said hello to him after that. Kids really respond to the unembellished truth.

Sometimes he brags about his medical experiences - he'll talk about about how it hurt to get his shots but he was very brave, and the EMTs and ambulance ride was very exciting as far as he was concerned. He complains about taking his seizure meds but we always tell him he needs them to stop the seizures and he says he doesn't want any more seizures and takes them. So at 6 he seems to take his 'differences' as things that make him special. I'm sure that will change, but I plan on reminding him of that when it does. Maybe you can talk remind him that he's always had his disability so he's feeling differently about it, but it's always been there and he's always managed to live with it very well.

Just be honest with your son, don't overwhelm him with information but make it available and have it ready for him to look at when he's ready. Be guided by his feelings - maybe he has always felt different but he needs to express it now. I know it sounds trivial, but even without his disability 12 is a tough age and what if he wasn't keeping up with his friends because he wasn't very athletic? I guess I think it's ok to say "It stinks that you can't run fast like your friends, but I know there are things that you're good at that some of your friends have trouble with." And then spend time together with him finding out what he's good at and what he enjoys. I think the only 'wrong' thing you can say it to say nothing at all or try to downplay his feelings.