What is it like to have CP? - Cerebral Palsy Message Board

mhitch · 05-06-2004, 02:17 PM

I am a parent of a 5 year old boy with CP My son does not speak or walk but his understanding is very good and he has started using makaton signing. I would really like to understand better some of his frustrations etc. in order that I can better understand and help him.
He also has occational seizures and he also "jumps" like he has been startled is this common?

Strawberry1 · 05-07-2004, 12:59 AM

Quote:

Originally Posted by mhitch

I am a parent of a 5 year old boy with CP My son does not speak or walk but his understanding is very good and he has started using makaton signing. I would really like to understand better some of his frustrations etc. in order that I can better understand and help him.
He also has occational seizures and he also "jumps" like he has been startled is this common?

Yes, it is common - many persons with CP have an overactive startle reflex and/or seizures.

As my type of CP is very different from your son's, I can't say much about how it feels to be like him, but my advice is that he should be treated as a basically normal child who just happens to have difficulties with moving & communication. Of course he needs all kinds of special arrangements, but do not let those special things define his whole personality. His disabilities do not make him a wicked or cursed person or a martyr, neither they make him a saint or a messiah or a very profound/wise person. Basically he is just a normal child.

Do *not* praise him more than you would praise a normal child. (Of course, every child needs lots of praise & encouragement...) If you praise him too easily, that may later cause problems with self-esteem: when people say prositive things about him, he thinks that they only say so because they want to be kind to him because of his disability, not because they really appreciate him.

musicmaker650 · 05-07-2004, 09:35 AM

Good advice Strawberry1,

it is so important to treat any child, or for that matter anyone, with love and kindness. As you said, don't over praise a child. For the disabled, this further alienates them, in the "eyes" of the AB's. Children need boundaries too. Of course, a disabled person needs more attention. This is just as a matter of fact

rienn · 05-07-2004, 10:15 AM

All I would say is let him control his life as much as possible. As he grows, do respect his rights and privacy. Give him explainations and guidance, but let him do the judgement. Most importantly, do not be mad at him for having startle reflex or something that he can't control. Believe me, it's hard when someone close to you doesn't understand your situation. Good luck.

KIDSAREGREAT! · 05-28-2004, 08:39 AM

One thing that I am learning is to ask a lot of questions. My son is 9 and it's so hard to tell what's going on with him unless he tells me or I observe his actions and ask him questions about it. My son also jumped like he was being startled, more when he was younger but I'm not sure about it. I just assumed it just went along with the C.P. I would just try to encourage communication with him in any way possible. One thing I know for sure is that a parent knows their child better than anyone else! If you think he's tired, frustrated,lonely, ect. then trust your gut feeling. HAVE A GREAT DAY!