Sunday, May 16, 2010

Being Sensitive....

So, I don't want to pick on anyone, and I do understand where people would come up with the ideas they think....but I rather think it is wiser and more prudent to ask before assuming. Just because a child (or anyone for that matter) is disabled and physically not able to speak does not mean they are mentally handicapped. If there is ever any question about my son's condition and what he is and is not capable of, please do not assume, just ask.

His Official diagnosis is: Choreoathetoid Cerebral Palsy

This means he has a "movement disorder" related to damage in the basil ganglia and Hippocampus areas of his brain, this manifests in low muscle tone and coordination, uncontrolled movements, difficulty eating and difficulty with speech.

This is what he can not do at this time:
Eat enough to get the nutrition he needs by mouth (he is fed through gastrostomy tube)
Sit unassisted
Talk (limited articulation make it very difficult for him to be understood)
Assist in self help activities such as feeding, dressing etc.
Toileting is quite uncomfortable due to his low trunk strength, though he is fully aware of when he needs to go the the bathroom, so he is diapered.

This is what he can do:
Understand concepts appropriate for his age.
Answer yes and no questions verbally
Drive a power wheelchair using a head controller
Follow directions
Read (though we are not sure what level because of his limited speech and fine motor coordination)
Use a touch screen communication device
Identify letters, numbers, words, etc.
He understands right and wrong as well as consequences.
Communicate non-verbally through gestures and expression most of his wants and needs.

I am sure this is not a complete list....but just the very basics. So don't assume, just ask....


  1. Good girl! I'm proud of you!

    We were at the grocery the other day, and this woman kept talking to ME, and asking things about Jack...I kept telling her.."just ask him!" It gets so irritating.


  2. I Love You BECKY!!

    This is so wonderful, Thank you for posting this.