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Posted by cindy on October 29, 2000 at 12:36:33:

In Reply to: New Baby with Cerebral Palsy posted by Nicola Wright on September 21, 2000 at 19:10:53:

Nicola,

My sister's child has CP. I think he was somewhere around 6 months when they realized that it was CP. I am no expert on the topic and I don't know what form of CP your baby boy has -- but I can tell you that my sister heard all the doom and gloom stories as well. From being an invalid to mental retardation - ALL of the medical professionals gave her bad news.

But - she just wouldn't accept it and honestly, I don't think doctors know how to predict the future of a CP baby -- In my opinion, there are too many variables involved to truly pretend to know their potential outcome.

Anyway, my sister was lucky enough to live in a city with special programs for disabled children and her son has been in this program since he was a baby-- The school puts disabled kids with other kids that don't have disabilities to emphasize integration into normal classes. There has been very intense physical therapy from day one as well as a focus on cognitive skills.

My nephew is not mentally retarded -- he scores above his grade level on cognitive tests. We still don't know if he will ever walk - but by starting the PT at such a young age -- we know that his motor skills have developed and will continue to do so. He also is receiving the "Botox" treatments.

He just turned 6 years old and started public school this year. He has made friends there and the kids actually come to my sister's back door and ask if he can come out and play -- she said she cried (with joy) the first time it happened.

But what I can tell you -- that my sister has told me more than once -- "If I had listened to what the doctors told me and accepted it -- he would be an invalid, appear retarded, etc."

Having said all that -- It is obviously challenging and I think this year he is really feeling the frustration of not being like most of his other classmates -- Also - my sister continually educates the teachers around her son on how to communicate and interact with someone with disabilities.

But, what I have learned from my sister, is to
- challenge the doctors (including getting multiple opinions)
- get educated, research and learn your facts about CP
- and follow your gut feelings about what potential your child can reach and support him on that path.

I know this is a hard time for you.

Cindy


: I have a 3 month old baby boy who has suspected cerebral palsy. He has been having seizures and the doctors are worried about his muscle tone. I am so worried about what the future holds for him - the doctors always seem so doom and gloom. I would love to hear from parents who have been in a similar situation.


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