Cerebal Palsy, It's Too Much For Them

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7/19/2011 2:52 PM

Our friends have a daughter that was born with this condition 13 years ago. Until now they have done a great job caring for her, and they still do, it's just that with all the medication, theropy and other stimulas they give her she is getting worse.

Since birth she has not been able to walk or communicate in any way other than grunts, screams and facial expressions. She is still somewhat undeveloped from lack of physical activity, but does grow and is getting increasingly more difficult to handle. It's to the point that they are considering placing her in a home for care.

Talking with my friends I can tell that they feel they are failing her, and it's tearing them up. They're both smart people and realize that it's for the best, but after the constant care they've provided for her all these years they're having a hard time planning on letting go.

Anyone here been through this or have some words of encouragment I could offer them?

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[Moto Creed-O: Take the High-Road.....Kick His Ass and Fuck His Chick

7/19/2011 3:27 PM

Man that's really tough, but it sounds like the parents know whats best for her and that's to get her in a home for care. Nobody but the parents really know what she needs and it should be encouraging that they're at least willing to do so.

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7/19/2011 4:54 PM

My uncle cared for his autistic son for many years and it was clearly a very difficult task.

I couldn't imagine how difficult it must be to raise a child with those kinds of issues where even the most basic communication is almost impossible.

Is it feasable for them to hire a nanny or someone who could help take some of the burden off their shoulders. Even a couple of nights a week would help give them a little freedom and let them recharge their batteries.

Beyond that I'm afraid all I can really offer is sympathy for their plight.

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Empty a bag of skittles into the toilet and then flush. It's like watching a five second long nascar race.

7/20/2011 8:50 AM

That's really tough...I had a friend with a kid in a similar situation. He was really, really down about it. They actually had twins, and both had problems. On top of it the medical bills were nearly $500,000. They also separated recently.
One thing I try and do with my buddy is take his mind off it. You can listen and listen which is good, but it's nice to see someone's spirits perk up when we do things like play some music or go out and see some friends. A bud to hang out with is a great distraction, just if you can take your mind off your worries for a little while.

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7/20/2011 9:14 AM

Really sad deal all the way around. One of my good friends from high school has a son born with downs syndrome, really tough and put a huge strain on their marriage.

Thoughts and prayers go out to them, i cant even begin to imagine how hard of a decision they are being faced with.

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-OC
"Feed The Bull"
Twitter: @ocscottie | Facebook

7/20/2011 9:26 AM

Rooster wrote:

My uncle cared for his autistic son for many years and it was clearly a very difficult task.

I couldn't imagine how difficult ...more

You and me both, I am in constant awe of how they deal with this. It's pretty easy to see that when we're all together with our friends and kids that this is a father/mother, daughter relationship they'll never experience. But it's also easy to see that they love their daughter unconditionally regardless of the circumstances and not once since I've known them have ever expressed a feeling of remorse.

Yes they are able to get out for some down time. The mother has done an exceptional job lining up nanny's and processing the paper work with the state for some assistance.

Thanks for your input.

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[Moto Creed-O: Take the High-Road.....Kick His Ass and Fuck His Chick

7/20/2011 3:46 PM

Unless I was in their shoes, and thank goodness I am not, I cannot offer an opinion on that. I think it is something that you have to live through in order to understand.

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